The Ferryman's column

Things are just fine.

2011-07-29T15:48:00.003+01:00

"News of my death have been greatly exaggerated" I thought it wise to tell people that I am still here and fighting fit.

In fact fitter now than I have been for the past 10 years - with the start of the rugby season just one month away I need to maintain my fitness - why I hear you say because in my mid forties i wanted to give something back but also train for something that did not involved running more than 6 miles. So I have taken up rugby refereeing. Its fast and furious, keeps you active and is hard work. It is hard work when it involves your voice and hand signals some of which mean that you are somewhat crooked in ones signalling. But proving that cancer is no barrier to living a near normal life.

It is 6 years now and with one or two scares I am ok. Summer is always a difficult time for me as it defines my treatment period - when reading back to the events of July 2005 I can still recall the radiotheraphy sessions and the 17 hours of nasal feeding through a tube.

I am lucky, still here and thank for those who asked :) Keep attacking x

It makes it all worthwhile - feedback :)

2010-11-30T13:26:00.000Z

Hi Nigel,

Forgive me for being so informal, but I feel that I know you already!

As you may have already guessed, I too, am in the... wait for it... SCC club, I was diagnosed on April 21st this year, and by the 06th June I had had a, Tonsillectomy, Tongue biopsy, Neck Dissection, multiple tooth extraction, due to my fillings and a PEG fitted. Followed by 6 weeks of Radial radiotherapy.

I am doing well, considering, but I have an overwhelming "sunken heart" feeling a few days before I have my 4 weekly visit to my fabulous consultant.

I am 46years,just, have never smoked, I am teetotal, great Oral hygiene and have always lived a healthy lifestyle!

I have a fabulous hubby and wonderful children, I say children, my youngest is 22years!

I desperately sought, well, I tried to seek, comfort in someone who may be or has been in a similar situation to me, most were from the good old USA, I then came across.. The Ferryman's Column!


It's just a "Thankyou" really, it has been a great help!!

I too am aiming on kicking this in the arse!

It's a tough call, but somebody's got to do it!!

Kind Regards.....


Linda

New pictures

2010-07-05T10:36:00.003+01:00

I was away in Devon and found these pictures - I have uploaded them to the pages that relate to to the pictures - day one after my neck dissection, one week after and two weeks after.

At the time I thought them too shocking to show people now I feel that if people are to use this blog as tool for getting through then they need to know the challenges and the success that treatment can give you.

Keep attacking

5 years today - alive and cured - this was 5 years ago!

2010-05-18T12:43:00.002+01:00

The first cuckoo of the summer invades the morning peace. The collared dove is removed from their lofty perch. The prize of the dawn chorus taken over by this summer waker of dreams.

The ghostly Yew standing majestic against the Azure sky stands bold as the sun hits it's lush coat.

The trees dance like a banner waving in the wind showing their true colours.
Gold, pink, red and crimson all lit up in the summers dawn radiant now after the winter chills.

A dawn of expectation , a dawn of Summer a new dawn which is here today. Like the cuckoo let's not let it steal our World let's live our today for today the 18th Of May.

Views and sounds from the garden at 0600 today enjoy today.

Five years ago I cried my eyes out after being told I had cancer - five years later this very day I am cured - long live the 18th of May

Cured?

2010-03-02T20:23:00.003Z

In 2 weeks I could be cured!!! Not is the cured sense as a rump of Wiltshire bacon but cured from Cancer! How strange will that be.

Time to call the counsellor and I am not joking!!!

That what my consultant says as I attend my final consultancy on Monday the 15th March 2010. It will have been a long journey from that day on the 17th March 2005 went I lent against my hand on the way to Cheltenham festival and found that lump.

What will be my reaction, joy, relief or I suspect a sense of loss. That maybe a strange thing to say but it is true. The five year milestone is technically on the last bank holiday weekend of may but stuff that i will take 4 years and 10 months as a fair old milestone to reach.

I have written about the anger in the past, why me, but also the post traumatic stress of cancer. I truely will blog my feelings in two weeks time as I feel it adds value to my writing to show those who come after me the "full life cycle" of cancer.

I today had coffee with a male work colleague who has just had an investigation for testicular cancer. I wanted to say it will be fine, but I know that is not right. It is like a midwife saying this is not going to hurt to the women in labour for the first time.

For every person cured there will be someone who dies, someone who finds out that they have cancer, someone who gets told they have a terminal illness.

I write this tonight in neck and shoulder agony. This being a reminder of cancer that will never let me forget.

I aim to celebrate my 5 years cancer free with running 13 miles in May, not for charity but for me, to prove to myself that cancer will not and has not beaten me.

Keep attacking - 13 days to go! Nige

Exeter Express and Echo supporting Mouth Cancer Awareness week

2009-11-17T18:45:00.005Z

THIS week, a campaign is taking place to raise awareness of a disease with a higher proportion of deaths per number of cases than breast and cervical cancer — mouth cancer.

The lips, tongue, cheeks and throat can all be affected by mouth or oral cancer, which is diagnosed in more than 5,000 people and kills nearly 2,000 people each year in the UK.
As early detection and treatment improves survival chances, campaigns are run to encourage people to get checked out by a dentist or doctor if they spot any symptoms.

These include ulcers, lumps and red or white patches in the mouth which remain for at least two weeks.

Three quarters of cases are linked to smoking and excessive alcohol consumption. People with both habits are 30 times more likely to develop it.

Mouth cancer is twice as common in men as women but the gap is closing.

Although it is more likely to affect people over 40, an increasing number of young people are being diagnosed with it.

People with mouth cancer can suffer from facial deformity, loss of teeth, damage to the tongue and throat and consequently difficulty in talking and eating.

Nigel Gooding, 45, a self-employed management consultant from Ide, near Exeter, was diagnosed with mouth cancer in 2005.

Nigel, who is married with two children, aged eight and 11, was ill with flu-like symptoms and thought little of it until he found a lump in his neck. Weeks later, the lump had not disappeared so he went to see his doctor, who referred him to a specialist.

He did not smoke or drink excessively and it is unknown why he got the disease, but he went on to have surgery, radiotherapy and chemotherapy.

He said: "It was a complete shock to learn I had cancer. The treatment was brutal but it saved me and I'm here to tell the story."

During the course of Nigel's treatment, which finished later in 2005, muscles and nerve endings in his neck were severed, and he still feels pain there sometimes.

He couldn't speak and had to be fed through a nasal tube but is now more or less back to normal, though he still has to eat dry foods like bread with a large quantity of water.

He said: "I have less mobility in my shoulder and I have a lazy lip and can't smile properly on that side."

But he does not consider himself less able now and he feels lucky.

"I'd encourage people to book an appointment and get checked out," he said. "The sooner you can get diagnosed and treated properly your chances of beating this dreadful illness are a lot better and you can get on with your life."

Andrew McLennan, consultant oral and maxillofacial surgeon at the Royal Devon & Exeter Hospital, said in Nigel's case, the cancer was caught reasonably early.

He said: "Having something diagnosed earlier makes it a lot easier to treat and there are more options."

His team sees more than 100 referrals and performs surgery on around 30 patients with mouth cancer every year.

Mouth Cancer Awareness Week, organised by the Mouth Cancer Foundation, runs this week, which also falls within the British Dental Health Foundation's Mouth Cancer Action Month.

Mouth Cancer Awareness week

2009-11-16T17:50:00.001Z

This week is Mouth Cancer Awareness week and I have my usual bag of press interviews.

I will update my band of listeners during the week but I am very interested to read the research to HPV and Oral sex to mouth cancer which begs the question should we also vacinate boys as well as teenage girls?

http://www.mouthcancer.org/public

More later in the week - keep attacking

Nige

Job done

2009-10-19T13:39:00.004+01:00

I must admit the last four days have been really busy and very productive.

Yesterday Paula, I and Mrs G from left to right completed the Cancer Research 10K and raised going on for £750 for Cancer Research.

Last Thursday I was sent for by Doctor in what I can only describe as an act out of Victorian melodrama. My Doctor who will remain nameless who in fact in over 2 years in registering had never seen me decided that he had to see me to discuss my application for exemption for my prescription payments (as per new rules for cancer patients and those suffering from the effects of treatment)

I can only say that my doctors style was aggressive and threatening. It was clear that he was not aware of the regulations and I am sure had been modelling himself on the
character "Doc Martin"

Cutting a long story short he did sign my exemption form - but has stirred up a formal complaint being dispatched to the practice manager. We should not be scared to provide feedback to Doctors because I am sure that others may have been denied the exemption because of others not knowing the rules!

If you know someone who is suffering from the effects of treatment tell them to go and see their GP and remind them of the rules!

http://www.macmillan.org.uk/Get_Involved/Campaigns/Prescription_charges_campaign/Prescription_charges_campaign%20.aspx

A sense of irony hits me as I type this I have had a seizure in my left side!!! It is a daily occurrence solved by exercise and a good does of painkillers.

I had enough paint yesterday when I completed the Cancer Research 10k at Bournemouth in a respectable 63 mins - that will do me and we are approaching £750 in monies raised this year.

Thank you to you all for your very kind words and inspirational messages!

There was a rather sad sight of irony at the finish yesterday an exausted runner who had sucessfully finished the course sat in her Cancer Research shirt puffing on a fag in front of her children! Now that is irony.

Keep attacking Nigel

Ongoing cancer support - a positive for Gordon Brown

2009-10-15T12:18:00.006+01:00

I have written many times supporting the need for ongoing medical as well as the psychological support required in those of us who have had cancer treatment.

In my own case those regular readers will know of the daily battle with pain one has through the side effects of my neck dissection. The lack of muscles on my left neck and shoulder and the constant and embarrassing muscle freezes caused by all things neck related. The effect of this is daily pain - depending on what I have done throughout the day.

I tend to get on with it and accept the pain but have a supply of suitable pain relief drugs. I came off codeine and morphine years ago because of the addiction factor and stick to difloenic which is issued on prescription.

Now not wishing to do politics here but today I am embarking on a visit to my Doctor to try and prove that this said pain qualifies me for an exemption certificate under the new rules for cancer patients introduced by Gordon Brown's government.

www.dh.gov.uk/en/Healthcare/Medicinespharmacyandindustry/Reviewofprescriptioncharges/index.htm

Whatever is your thoughts of the Brown government his commitment to cancer treatment has been unstinting. The 2 week maximum wait to see a consultant on suspicion of cancer, the increase in screening facilities and the government drive to up the success rates of cancer treatment and the investment of new research facilities is important investment and I must give praise where praise is due.

Alas the NHS needs to learn that "spending more time with their patients and establishment a relationship with is 2 way is the key to successful treatment of cancer"

The exemption for people on cancer treatment is also a positive step in the right direction. In my own case not working full time and armed with a box full of drugs the cost was enormous.

I have studied the rules and it is clear that a valid exemption certificate can be issued that a person is undergoing treatment for cancer, the effects of cancer or the effects of cancer treatment. In my case a "radical neck dissection"

In my own case I still get regular prescriptions of drugs for pain relief. This week I completed my medical cost exemption form for prescription drugs and this week have been summoned to see my Doctor to discuss. The surprising thing about this whole experience which quite frankly has hacked me off is in the 2 years I have been registered with my Doctor who at this stage will remain nameless he has never taken an interest.

This astounds me. My hospital consultant writes to him after each check up. he is kept in touch with my health and treatment but today he wants to see me because I have asked him to do something.

I do find this relationship bemusing. In no other service or business does this strangely one sided relationship exist between patient and supplier. It borders on arrogance from the supplier of the service and quite frankly is very "old school" Doctors have a trusted and important part of our lives, some of them need to learn that they are not the most important part of the relationship but as this is me and my life I am!!!!

I am fortunate that I have a great relationship with my Hospital consultant and his team and have been escalated to the grand level of patient representative for the SW Regional Head and Neck Cancer forum

I will await the outcome my appointment and keep you posted. It could an interesting meeting with my GP, crouch, pause, touch, engage!

Keep attacking!

The annual slog - The cancer research 10K

2009-09-20T12:42:00.004+01:00

I have some good news today. Its flat, what is I hear you ask my tyre, your chest or your apartment, no Bournmeouth seafront!

It is that time again. My legs hurt and I would rather be in a large comfy chair being waited on by people serving me tea. I can but dream having just returned from a 7k run in readiness for the annual 10k charity bash.

I have raised over £3000 for Cancer Research in the 3 years since my treatment finished. This will be my 4th year

I am taking part in the Bournemouth Seafront, very flat on 18/10/2009 to raise funds for Cancer Research UK and would really welcome your support.

Of course I am going to beg for your money, but I know there is a credit crunch on.

This is my 4th 10k Cancer Research since my cancer treatment and to date I have raised over £3000.Please take a moment to sponsor us. It's really easy - you can donate online by credit or debit card at the following address: http://www.run10ksponsorme.org/thegoodies

All donations are secure and sent electronically to Cancer Research UK. If you are a UK taxpayer, Justgiving will add an automatic 28% bonus to your donation at no cost to you, making it worth even more. Please join us in supporting Cancer Research UK and a fabulous cause!If you wish to arrange something as low risk as a dress down day I would be delighted to add your collection to my total so that I can raise that £1000 a year I promised to Cancer Research.

I am also running the Great West Ron (Half Marathon) to celebrate 5 years Cancer free in May next year, care to join me?

http://www.thegreatwestrun.co.uk/html/2010_entry.html

Thanks and best wishes, Nigel

4.5 years and counting

2009-09-14T19:32:00.002+01:00

I today had my last but one hospital appointment before the all clear. (Five years being the all clear) Having been through mouth cancer you know when something is not quite right but today I was confident if not nervous. Jen, my wife was on her way to New York the first time I had missed an appointment without her, but safe in the knowledge that I was ok.

I had cheated before hand as I had seen my dentist on Friday and attended today just before my hospital appointment so I had the double safeguard.

This check up was even more nerve racking having visited my mother on Friday. Mum is not the woman I knew she is frail, less than 6 stones and potentially with cancer. Mum has also Lewins Dementia which is a very nasty form in itself and has seen my mother over the last 10 years fall victim to this shocking illness.

The challenges of living with the after effects of cancer cannot be understated. I have often raised the point of the mental effects of the treatment but also the physical side. In my own case I get on with life with a half functioning muscle system in the top of of my shoulder and neck. I tend to shy away from the term less-abled because I do most things just takes me a bit longer to do things and hurts more! It has also left me partially deaf and physically scared though you have to look hard to see the joins where they sewed my head back on!

So as I move into the last 6 months of my remission I have been invited to sit with the SW peninsula head and neck experts as a patient representative, a task I wholly relish but one I hope can support clinicians and patients through this horrid journey.

Keep attacking Nige

Still in shock

2009-09-09T08:39:00.002+01:00

I am in shock this morning. I walked into my office ready for a days work and to be honest cried my eyes out. An unsual reaction for a 45 year old bloke in his 4th year of remission with cancer but one when I explain the reason you will understand.

When I get here in my life and mind I start to play my favourite song, Yellow by Coldplay. Orpah recorded it for me when I was ill and in those dark days despite it being sunny and warm of 2005 it gave me faith that I was wanted and needed by my friends and family. Orpah then had a beautiful baby called Emily, Emily was not well as a little baby but now is as beautiful as a toddling toddler she has now adopted yellow.

I met my brother last evening Dave who told me that my mum has suspected cancer. For those who do not know my mother she is 81 and lives in a residential home in Exmouth. Mum has lewins dementia for those who do not know about lewins I will not bore you with it now but it is a terrible illness. Mum is not well, even more so now it is suspected that my mum has the illness that I had. The worry for mum is that because of her illness and age treatment will be difficult. The treatment is a long game and the medical people are just not sure she is it up to it. If not then I will ensure she gets all the help she can and pain relief if we get to that stage.

I ahd just finished reading Alan Bennett's Diaries about his experience with his mother with Lewins. It brought home the shocking truth of an illness which is just put down as old age.

I have my last 4 year check up on Monday, my last before my 5 year check up. It has rocked me back and slapped me in the face to say cancer is still here and around me. Last year it was my nephew Mark and now my mum.

Look at the stars, Look how they shine for you, and everything you do, Yeah they were all Yellow.

Keep attacking!

The cancer mind needs treating

2009-07-13T11:23:00.003+01:00

At the weekend I had a visit from my relations.

A dear friend of their mother is suffering with breast cancer. The story sounded very familiar a clinical approach but her doctors to her problem which largely ignored the psychology effects that the treatment of her treatment.

In my earlier blog postings I waxed lyrical to the point of tedium about the lack of psychology treatment to cancer people by those providing health related services. Those who go through cancer treatment are often in a process which is invariably poorly explained (though not in my case) and left to fend to themselves when it comes to dealing with the "post traumatic stress" of being told you could die from this!

The psychology effects are usually left to the third sector if they exist. In the case I heard about this weekend the hospital are doing a wonderful job fighting the effects of cancer but providing very little help in the mind journey that the patient has to undertake. I have a view that in some cases it is arrogance from the part of the clinician in some cases in is treating the process as a production line, but it in most cases it is not understanding the mental processes of those who are undertaking the treatment.

My Oncology Consultant was truly shocking in his understanding of my mental journey yet my surgeon was spot on. It is this inconsistency that I hear about on a weekly basis. I read of couples who split up after Cancer and the trauma it causes.

I am sad that 4 years on from my treatment the NHS are still struggling to support the mind as well as the body in this complex treatment.

Keep attacking !

Memories

2009-07-07T15:02:00.002+01:00

Our senses tell us something is wrong. Our senses tell us that the jockey on the 3.40 at Kempton Park will not win because he is wearing the wrong colours! So my wife says as she picks winners based upon colours of silks - never mind all that form book and breeding rubbish.

Today was a day where my sense of smell reminded me of this week 4 years ago, this is where the pain really kicked in. My treatment to date would have been a neck disection and the associated pain that that brought. However this is where things really go nasty, the 6 weeks of radiotheraphy(still an oxymoron) to my head, mouth and neck and 3 sessions of chemo.

I spent this morning at Torbay Grammer School with Will, who by now is nearly as tall as me and at 10 is destined to be a second row forward. I was front row so I suppose it is promotion!

I am on leave today and decided to take the train back from Newton Abbot to Hampshire. As the train wended its way around the beautiful South Devon coast I could see the tide is out. I whinced because I knew I would not like what I would smell!

Regular readers of my blog will know that during my treatment I was leaving in Starcross. Starcross fronts onto the river Exe and is only separated by Brunel's railway to South Devon. It was this railway that I was riding. I approached Dawlish Warren and could see the tide was out. That meant only one thing. The Exe would smell. Not an unpleasant smell like teenage boys pe bags but a smell where sea meets river. It is a pungent seaish smell, but not quite sea smell.

I remember the heat of July 2005 and the smell of the river. Instantly I was transported back to the bads days. The chemo would make me ill with normal smells, the sea, food and perfume. For a few nervous minutes I was transported back to a time I want not to forget, but just remember.

The train sped through Starcross. I realised that my love of the River and that view had been diminished and now turned into a horror show. When I left Starcross I was glad to leave because of the haunting memories I have. It is a real shame because just .5 mile away is the ebach I was brought up upon Dawlish Warren.

I suppose over time they will dimish and disapear. Actually I do not think they will.

I live with pain everyday in the shape of my left head and neck. Their mobility restricted by my life saving operation. This in turn means that my movement is restricted and hurts.

It is funny how memory both good and bad affect our lives, at least I am still here.

Keep attacking! Nige

4 years today

2009-05-17T19:34:00.000+01:00

I was deliberately busy today.

I suppose I should crack open the champagne and celebrate.

Regular readers of my blog will know that if their sums are right today is the anniversary of cancer being discovered and that fateful day when I was told I had cancer.

I have never been a celebrator but always feel my anniversary to be traumatic - its not the 17th that worries me it is the week after the 23rd, the day of my brutal neck dissection that has left me less-abled a bit of pain everyday but suppose I am alive.

Friends sent best wishes and family loved me today. I have a lot to be thankful for even in the rain I smiled.

Next weekend will be the rela challenge as I remember it like it was yesterday waking up with the pain, the staples in my neck, the tubes drawing off blood into large bottles and the morphine, on joy it is going to be one hell of a week.

Keep attacking Nige

Always believe that you can reach your dream

2009-04-17T07:40:00.000+01:00

I have awoke early and in my inbox is an email.

I have never met Sarah but have in my mind and heart. That may sound strange but when you have sat where Sarah has you will know what I allude to.

I have replied to Sarah that is between us but for all you others who are fighting or nursing love ones through just look at the courage of Sarah from her email below.

Dear Nigel,

Please accept my apologies for this intrusion. You don't know me, but i wanted to thank you for posting your blog - it has been my guide and companion over the last 6 weeks and I am grateful that you took the time to detail your experiences so honestly, allowing me to gain insight into what was in store for me. I know it's been some time now since you were dealing with cancer, but I came across your blog after reading your posts on the mouth cancer awareness sight. The forums there were getting me down and your strong responses really stood out - you were writing what i had been thinking. I have since read and re-read your blog to track my progress against yours as i make my way through a very similar treatment plan.

I am 37 and was diagnosed was a cancer on my tongue back in November. I had surgery and I am now in week 6 (of 6) of RT and have had 2 rounds of cisplatin. As I write, I know i have just 4 more RT sessions to go, but life is very miserable and i just want to stop now. I know that you had very serious health issues in your last weeks of RT and wondered whether you finished the complete course of RT? I am thinking of packing it in and wondered if you made it through to the end?Apologies again for intruding, but thank you for the blog. It has been a big support to me.

Best wishes Sarah

Sarah if you are reading go watch this you tube video it makes me cry - why because I remember the pain of so badly wanting to reach the dream of freedom from cancer and treatment. Sarah I knwo you are over the treatment now - it will be 2 to a month before the pain in your mouth and throat starts to subside - be strong it does get better I promise!!

http://www.youtube.com/watch?v=9lp0IWv8QZY

This is the reason for my blog.

2009-03-16T18:45:00.003Z

I started my blog nearly 4 years and as you may see I am pretty rubbish at keeping it up to date. I do however get mail from time to time from people who need help and advice and on the night before the 4th anniversary of finding my lymph gland lump on my neck I feel I should share one such mail that did touch me.

Keep attacking!

Hello,

It may be strange to send a note to a complete stranger, but I wanted to thank you for posting your blog. My 49 year old brother in law starts his first round of heavy doses of chemo tomorrow for his battle with tonsil cancer that has metastasized and spread throughout his body. He prognosis is not good ( stage 4 with bilateral lymph node involvement and in his bloodstream) and will be having similar treatments, radiation, neck dissection etc, that you endured during your battle with cancer. I wanted to thank you for your honest, scary and completely amazing story. You are giving hope to many people in my family. I read your complete journal in an afternoon to try to better understand what my sister and her husband and children are possibly going to have to go through. I am sorry you suffered. I think we all may be better prepared for what is to come due to your painfully honest and complete story. I hope you are happy, well and that you continue to live a good life. My family thanks you very much.

I have obviously taken the name out of the email but when all seems rubbish and the credit crunch bites spare a thought for those amazing people fighting, cancer, starvation and those fantastic people who help fight it!

Thank you so much for your kind donations

2008-09-19T09:34:00.002+01:00

Friends thank you so much - the donation figures currently stand at £1140.

Total donated online:
£1,140.00

Gift Aid plus supplement:
£201.67

That makes a total donation of £1341.67

Your donations make me humble - thank you very much I will not let you down on Sunday.

Keep attacking Nigel

Overton no more!

2008-09-08T19:43:00.003+01:00

As part of my 10k training I rather stupidly undertook the Overton 5 mile race on Sat to get myself match fit for the Bowood House 10k in just 13 days!

I came 412 out of 420, yes 8th from last! There were just 8 people behind me. I would like to thank the race organiser for describing the course as undulating. They lied it was bloody hilly! I do dislike proper races like the Overton "5" as it was the last in Hampshire Summer league.

The guy that won the race did it in under 25 minutes which means he ran the hilly course in under 5 minutes a mile - now that takes some going. In fact it was one of those horried 2 circuit courses whereby you had to try and get onto the 2nd circuit before the leader lapped you on his way home!

I strolled in with a 53 minutes and 10 seconds! My wife was pleased with that time considering the hills, I was mortified! Half way round the 1st circuit I felt like giving up. I am very lucky my treatment has only left me with restricted movement of my left shoulder and arm - the trouble with running long distances is that I have to work hard to counter the lack of control of my leftside of my body so hence it gets painful and I have to compensate with bad running posture.

I thought running would be ok after treatment but to be honest it is hardwork, but with nearly £1000 riased by everyone for my run in just 13 days time I cannot moan after all I am here and well.

I say that because I have a dear friend and dear man who is younger than me married with 2 boys and a beautiful wife. He is suffering Parikinsons. He gave up his sucessful lawyer career because of his health. On Saturday we were with them. It was a magical evening. It just shows that whatever life throws at you it should not stop you being and needing to surround yourself with things that are dear. We are thinking of doing a trip round Europe in a VW beetle, you know two blokes in VW but I think we will try the Isle of Wight first!

Whatever we do together we will be happy, safe in the knowledge that we have life and a chance to enjoy it!

Keep attacking N

It is that time of year again

2008-06-24T17:53:00.000+01:00

It is Nigel's 3rd year of survival after treatment. I know he asks you every year for money he is worse than Mr Darling. However this year is different we have enlisted a team! I am not sure whether he has paid them but we are upping the stakes.

This year my nephew Mark was hit with Hodgkinsons.

Last year Nigel raised £1500 on his own, we aim to raise £2000 to allow Cancer Research to continue thier amazing work. If you go to a 10k read the race badges and the reasons why people are running. One in three of us will be affected. Please donate online or pledge to us our happy band of sisters.

And we promise Nigel will find another way next year of getting your cash!

Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Cancer Research UK gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.

http://www.run10ksponsorme.org/petitstrotteursdelondres

Thank you again. Nigel

3 year all clear

2008-06-02T00:29:00.001+01:00

The wait at the specialist clinic was only 90 minutes late this time. An emergency delayed everything! Interesting point but it happens every time. From a customer service perspective it hard to get angry with the people that saved your life and may do in the future so you chill and smile, underneath seethe.

Today's appointment gave me the all clear. As it is my 3rd year appointment I now move to a 4 monthly appointment regime. I also have the emergency call in process if I feel things are wrong, which have worked well in the past 3 years.

I gave Jeanette my usual hug when leaving the ward but also had in the back of my mind "I hope I have my husband back now"

Her comment were not flippant but serious. I am a pain in the week leading up to my 3/4 monthly check up only to be expected but those you are closest to you notice it. I suppose if you have not been through an experience it is difficult to explain but there is no excuse for being a grumpy old man.

Cancer can make you insular, perhaps a warning for us all talk about your fears of impending hospital visits rather than hiding behind a mask.

So things are fine lest keep attacking and see what the next 3 years bring.

3 years on and I am starting to write again

2008-05-29T23:12:00.005+01:00

I am back, news of my death has been greatly talked about. It has been 3 years this week. Although the scars of the surgeons knife have healed, my serious external and internal burns have gone and my limp left shoulder exists. Mentally the pain is still there.

I still get big time serious pain from my left shoulder, too much life, too much carrying, too much digging on the newly accquired allottment the daily pain killers help.

I still travel the UK and still work full time without a grumble. I run 20 miles a week, dig my allottment and run my own buisness.

I am three years cancer free. I want to write again, many people have read the blog. Cancer remission is not just about me it affects everyone, my wife, my children my friends and those who seek guidance from my experiences.

In the next few days I will start dusting off the quill pen. I will be writing again. I feel I need it. I have cried over the last few weeks when I remember the start of the journey. I think it is like post traumatic stress.

In 7 days I was told I had cancer. Tonsils were removed, neck cut open and left less-abled for life, and prepared for 7 months of "therapy"

Next Monday I get the 3 year sign off the real MOT.

I want to give you an insight into living after Cancer treatment. I hope you will join me in the journey and an insight into a World which is often rarely seen.

Keep attacking. Nigel alias the Ferryman!

Runners nerves

2007-09-26T14:12:00.001+01:00

It is 5 days to go to my 2nd 10k since finishing treatment and the nerves have set in. One reason is that we are just £27 short of £1500 and the second is the added pressure.

I received the follwoing e-mails this morning:

Hi Nigel
I hope that you are looking forward to Sunday!
As planned I would like you to get up on stage and have a quick interview with Charlie from Gemini FM. This will happen approx 10.30am.
I would like to give you the number 1 to wear on the day!
I will leave this at the marquees for you to pick up. Please write your 'proper' running number on the back.
Alison Birkett our Press Officer will be there to look after you on the day and so do ask for her or me when you arrive.
You will also be sounding the air horn for the start of the run.
Many thanks for all of your support Nigel

This was from cancer research. At the time when people ask me to participate in raising cancer awareness I always say yes, but it is not until after that the bad memories come flooding back. At first I thought the whole exercise would provide therapy alas all it does now is provide a stimulus for fear. I am sure Sunday will be fine I am amongst friends everyone running in the race will be there for a reason, a reason for life.

Hey what am I worried about I am alive well, feeling good see you Sunday if you can make it.

Keep attacking Nigel

Help us beat cancer

2007-06-05T08:32:00.000+01:00

It is that time of year Cancer Research 10k races are upon us. This year is no different and I am running to raise £1000 this year.

Please dig deep and sponsor me online.
This year is a special year for me, I move into the lower risk group now having being 2 years cancer free. Cancer Research have asked me to be the official starter of the race and raise cancer awareness among men of cancer risks through the local press and media.Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: Cancer Research UK will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

As someone in remission with cancer I vowed that I would raise £1000 a year for the rest of my life to fight this terrible illness that will afflict and kill one in three of us. I am a lucky one.
Raising this money will go a long way to providing the vital support and help we need.So please sponsor me now and do not forget the gift aid box. You are welcome you join me on the 30th I would be delighted to run with you.Many thanks for your support.

Keep attacking

Nigel

Please feel free to contribute to my appeal.

http://www.10ksponsorme.org/NIGELGOODING

One year today - last ever posting

2006-05-18T16:29:00.000+01:00

I am one year on, today 12 months ago my tonsil was removed and tomorrow 12 months ago I was formally told I had cancer, but I knew this time 12 months ago today on Otter ward that I had cancer.

I have lived 12 months, today I got a cheque from my pension fund, I have a new permanent job with a huge opportunity and challenge, and share of a Docklands flat, 2 great kids and solvent after last year of spending all my life savings.

It is time to close down this blog, and say goodbye for those who want to keep in touch please do njgooding2002@aol.com

Thank you to all of you who have looked, laughed and cried with me. I still cry, I am still scared sometimes but life is better than it was 12 months ago, without this blog and you I doubt I would have been here.

Love to you and your kin, keep attacking.

Nigel

Life feels good

2006-04-15T22:31:00.000+01:00

The roller coaster of life goes on today was a good day.

I woke up no children getting into bed and wanting a hug, it was like post traumatic stress the silence when I woke up at 0830!

In the shower I finally realised that for years that I have had this perception and expectations of life that failed to match up with reality. Since the cancer I have found new experiences that have enhanced life and finally I realised that the bar of life needs to be set lower and enjoy the life you are given and seize everyday.

I got the bike out to take to Exeter, caught the train and biked around town, wow it felt good, I felt a freedom, wind around my head, a freedom that my legs and arms work and the bike goes quickly. I am amazed by my fitness the run was good, but today the bike ride was pure class.

I had a great coffee and chat with Sheila, then off to my Liberian Democrat friend Vanessa. V is standing for council something which in my past I have done, but alas failed to get elected, something which I have kept firmly in my Ferrymans locker.

I was part of V's door knocking team, ringing peoples bell and selling the message. Of course I had the people who said no thank you, like I was selling double glazing, and the bloke who slammed the door in my face rather rudely, I put him down as a do not know :) The whole process made me feel human, here I was doing what I do best talking to people listening to their issues, lives, important things to them, rather minor compared with cancer, but it was important them and that counted. I talked to people about gardening, railways, car engines nothing to do with dull old politics, but life, a life I am lucky to have. I had adult company at last, talking issues, laughing and had fun. Of course I asked the question can V rely on your vote she is good sort, it went well.

We retired to V's and she opened a red, for those who know I cannot drink wine, but it was smooth. Cancer took away wine for me, it may have aided cancer but wine was a no no because of the burning throat. I was envious V has a fantastic rambling house, full of character, full of people, and full of warmth and love. I am not saying it was a 1960's hippy commune but it did remind me of my days in the "greenfields" at Glastonbury. The collective warmth that it exudes was clear to see and feel.

I was envious of V's house it has everything I want in mine, warmth, charm and friendship, and of course the huge kitchen table where we sat for hours talking and laughing. The kitchen table came alive at tea time with V son, Stefan, and friends George and Sam I felt alive.

I cycled back to the station to catch the train home knowing full well that life has more to offer than the safety cocoon I have built her in Starcross it is time to move on, set the barrier lower and just enjoy, thanks to Chris, Sheila, V and the gang at Thurlow Towers for the does of reality which I now know life is such fun.

Keep attacking

Good Friday

2006-04-14T10:32:00.000+01:00

Well it is a Good Friday, ok I may have skin cancer, unlikely but I may have, that is the way your mind works after beating the initial dose.

The irrationality that strikes you is; can I beat it all again? will I need radiotherapy? chemo? lose weight? not be able to eat and face those dark nights alone?

My doctors are great, Dr Perkins of the Starcross clinic, he sent me to hospital this time last year. I owe my life to his professionalism. I cry when I see him, not that he is an unattractive man to extent that you burst into tears, nor does he smell of onions but he is honest, professional and caring.

I went there because I had a strange skin lesion on my wrist. He looked at the offending skin patch, was honest enough not to give me soothing noises, but wanted a second opinion. I remember the last time he said that! Fortunately there will be no need to go to hospital in the surgery there is a Dr, Dr Quinn who specialized in dermatology and has the skills to remove things as necessary.

We discussed the links with mouth cancer SCC and skin cancer SCC and there is unlikely to be any link, his passing words were if it were anyone else I would send them home with a fungal cream and tell them in to come back in two weeks, but with your history I feel we need to just make sure.

I felt special again, wanted, back in that NHS cocoon that looked after me so well. There is a huge sense of well being that I am being looked after and cared for again, a security blanket to look after me these tender days. Of course it will be all right, but does not stop feeling afraid.

It is the last day of Will and Ellen's visit, we have had a great week and on the whole they are well behaved, cheerful, loving kids, just like their dad! There will be a tinge of sadness but then a tinge of relief as I get my life back and my ankles after the corgis have finished snacking.

Enjoy the day and here is a biblical picture for Easter, St Peters in Rome, taken this year from the Presidential Palace, enjoy.

I am off to scoff some eggs!

Ferryman

Roller coasters

2006-04-13T10:34:00.000+01:00

There is nothing more scarey than being on the rollercoaster of life.

I called the doctors and had the usual gatekeeper questions is it urgent, of course it is urgent! I had SCC and this could be skin cancer SCC. The weird thing is that I know even it is not more likley I will assume it is.

My children are demanding my attention it is hard to focus on life but have to go and deal with the CBBC website as a very persistant ankle biter is keen to have her dad's full and undivided attention.

So here I am waiting for the doctor to call me back, a list full of hypocondracs before he can see me. Selfish I know but only after cancer can you really understand how you need to be selfish for your own good, otherwise many of us would not be here.

2006-04-12T18:15:00.000+01:00

The blog today is written from the floor in the indoor play area at Bicton Park. Sixty plus acres of park built around the start of the 19th century. There is the obligatory cafe, trinket shop, woodlands railway and outdoor death slides. It sits in the red Devon sandstone hills at the start of the Jurassic Coast. Will and Ellen are off making friends and their dad is consigned to the floor as the ankle biters(children) surround the adults like the scenes from the Western films where by the poor rehearsed white settler Americans were massacred by those nasty Indians. After all John Wayne wanted was to raid their tribal lands, steal their cattle, murder their children and commit genocide. History presents different views on life.

At the moment one in three of these vibrant young children in this room will get cancer. One in three of their parents either have or will get cancer. Cancer is no different to those films, it is the Indian fighter surrounding the wagon train but in our case the train is our frail fragile bodies.The news yesterday was dominated by plans to launch a tactical nuclear missile. Tatctical means the same devastating effects that occurred in Japan in 1945. The huge human and of course actual cost of war could be better spent dealing with the World's hypocrisy to deadly illness. Surely money would be well spent increasing the chances of not getting cancer to one in four or five rather tactically killing and maiming hundreds of thousands of people. How can you tactically kill innocent people?The noise here masks a fear. I was showering yesterday and noticed a small red circle on my right wrist about a centimetre in diameter with a clear white centre. It could be just a scratch or it could be SCC. My infected tonsil has SCC the same cancer that causes skin cancer. Of course I have not got cancer well not officially but I may have. It is only a natural reaction to fear the worse.

To reflect on what could be a second cancer coming. It most proberly is not cancer but it could be. It could be a scratch, it could be a wound from gardening. I am going to resist the temptation to self diagnose I got it so wrong last year.

However last year the Easter weekend marked the start of the illness period and I'm determined this year to not let the same happen again.I will wait until Monday then start medical intervention if it does not seem to go away I will not hang around.Anyway brave face time the kids want ice creams. Smile joke and act as if nothing happens fuck I want to scream and cry. Irrational I know but cancer makes you irrational.

Next time u see your MP ask them what are u doing to ease the pain of millions at home rather than causing it!

Keep attacking Ferryman

Out of the words of babes

2006-04-11T11:42:00.000+01:00

I had planned a long blog writing tonight but an incident happened tonight whilst putting Ellen to bed which shows the depth of cancer in my physocological make up.

I was putting cream of Ellen, I said "You wait until you are 18 girl I will remind you of this" Ellen replies: "Thats ok daddy you will not be here" "Where will I be was my reply" "You will be dead by then daddy"

OUCH!

My princess knows not what she says but why did that hurt!

Look after your mind and your partner

2006-04-10T08:48:00.000+01:00

I woke up the morning bright and early. The sun is shining and my 2 little babes are tucked up in bed.

One would normally expect that I would be looking forward to Summer, looking forward to the balmy nights and long days.

Alas how wrong you could be. The summer brings back memories 12 months ago I was still unsure what the lump in my neck was. I had no idea it was cancer. My online studies had never picked up mouth cancer and a secondary node filled with cancer cells. I had to wait one more month before knowing for sure I had cancer.

I was tidying the garden over the weekend and the memories fled back, the pain, the place where I sat in the sun last year. I tried to keep positive but as I have said before the mental stress and strain of cancer sometimes in greater than the physical.

In a research carried out by Macmillan the cancer charity I saw at the weekend indicated that the stress of cancer treatment and its after effects can have a devastating effect on relationships.
In part of the study 25% of those replied indicated that their relationship had actually broken up.

I think myself lucky but also sad that I was single during the trauma there was no one to upset, no one to change a relationship with, no one to steal the limelight off, or remembering my mother no one to become the centre of attention even though my father was dying.

Macmillan have decided to rebrand themselves and move towards an organisation that sees them focus more on pastoral and mental care. I wish them luck. I have written before about the mental damage cancer does, in hindsight if I knew about the effects of treatment I would even more scarred than I am now.

Mind you perhaps we should not worry about cancer, the radio news, which I adore conjuring up images of the stories being told tell us that Bush is off to "nuke" Iran and no more Swans have revealed themselves as carriers of the plague.

As a result I am off to Pennywell Farm to prod, smile, and stroke small furry animals to the delight of my babes who have just gave me huge hugs and kisses. Hey perhaps Summer will not be that bad after all :)

Have a good day.

Ferryman

Bird Flu and cancer !

2006-04-09T12:00:00.000+01:00

It has been a few days since I posted and no I have not been rounding up dead swans in an attempt to rid the World of bird flu. Do you know that you have more chance of winning the national lottery that catching bird flu! Even that statistic did not stop my local surgery last winter being clogged up with old dears ensuring that the flu jab they got, which incidentally did not contain the bird flu strain.

I very rarely watch television news these days preferring to conjure up images in my mind created by radio. However, watching ITV news last night there was a feature on bird flu. They have a "bird flu" control centre and had a number of email enquiries asking ITV news "is it still safe to go to Scotland on holiday" or "can I still race my pidgons" part of my cynical natures thinks that ITV made up these emails, but then again there are people who buy luggage at airports, there must be because there are luggage shops. I have said before what sort of mad fool turns up at heathrow with their underpants in carrier bags! Well someone does!

Onto illness after days of my feet hurting after my run, and some serious drugs from the Doctors I am proud to announce that including online/offline/gift aid donations I raised Â£627.05p I would like to thank all those people who supported and for those who did not Ihavee marked your card, cancer will after all effect one in three of us, I only hope it is not you or a relative.

Enjoy the day I am off to spot some swans on the river!

Cancer free! "nuff said"

2006-04-03T21:34:00.000+01:00

Trebles all round, joint head and neck clinic result today = cancer free see you in two months. Needs no further comment :)

Job done!

2006-04-02T14:49:00.000+01:00

Ouch it hurts, after 1.20 minutes of running through the lanes and paths of my village, and the help of the 3 great strangers all with stories to tell who helped me over the line I did it 10k.
My feet have seized up, they always did in my running days, like a cramp, means that I cannot walk for a few hours, well days, but hey been through worse pain.

I raised £572. 18 for cancer research thank you so much to those who donated
it made it all worth it.

There were a few secret tears before the race I found a quiet spot away from the lycra clad running partners to look at the river, my river the river Exe. When I was younger I use to slip away to the banks of the river Exe and contemplate life. Now living 30 metres away from it, it has shared my pain. Last summer it shared tears, fears and hopes for days like this.
From the castle I could see the sun shimmering away on the river and cried. I cried in relief, cried for joy, cried for William and Ellen.

As I crossed the line there they were, and also Orp my dear friend, yes friend who helped me through with others, Sarah, Jan, Dom Pat my sister, Ron my brother in law, Kevin, Steve and my other dear friends who helped me get me in the wet grounds of Devon Castle.

Thank you to all of you, lets hope that our £572.18p will go to ensuring that in our life time cancer becomes a preventable illness.

I am scared - Cancer Research 10k

2006-04-01T20:54:00.000+01:00

Ok one day to go and I am going to run it.

£415 plus £93 of gift aid = £508 I have made my target, of course I have to run it.

I know what the condemned man's last nights are like. I witnessed them I was there, I saw it night after night, day after day people coming and going into this life. I have felt the fear, then the tremendous relief of entering the prep room before saying good bye to tWorldlrd and the feeling of waking up drowsy, in pain, alone and afraid.

But this is different, the fear I write about above was daily the minute I knew I had cancer. It is the same fear that haunts me daily, nightly and sneaks up behind me when I am having fun or with friends. There is a moment when it mugs your brain and mind. You stare into space, you think about the oncology ward, who would turn up at your cremation, and tnegativesves, then you are transformed back to real World in an instant.

Tonight's fear is different. I laid out my cancer research t shirt, and my number 197 and burst into tears. I looked at the shirt, it said cancer, "like what I had" or still may have. Of course I will finish tomorrow, of course I will give up and walk or stop if I feel ill. Of course I expect I will cry when I finish it is only normal.

But I am scared, not muscaresres me these days, people do not scare me, threats do not scare me, life does not scare me, what does is running 10k tomorrow morning at 11am!

This time tomorrow will tell, best get some sleep.

Ferryman

2 days to go

2006-03-31T20:47:00.000+01:00

It is only 6.3 miles, and yes driving the car to Leeds airport I picked up landmarks and measured them. The Humber Bridge, bloody hell there is a sign saying 6 miles and I can hardly see it.

It did help having an email from Cancer Research telling me that the entries were closed for Powderham and pehaps I might consider the Autumn 10k races. This was a get out of jail free card I could still do the race in October and people would not feel let down or juped.

Still no idea what I am going to do, 4 years ago 10k would of been nothing a normal training run, today it feels life and death.

3 Days to go

2006-03-30T20:08:00.000+01:00

Just back from 30 mins and boy does it hurt, what do I do with gift aid I have over five hundred quid raised what do I do?

4 days and counting

2006-03-29T23:03:00.000+01:00

It is four days to my run.
Today was not a good day, it transpires that the job offer and 2 weeks in Lowestoft then to Bournemouth turned out to be 3 months in Lowestoft and no chance of working in Dorset.
It was quite a blow, the chance to be close to my kids and even have them 2 nights at the weekend was blown. I have got use to up and downs but not prepared these days to put up with crap. I am my children are the most important things in my life and my aim is to be working back in Devon within the next 12 months.

It was good however the two faces I could see when I said no thanks to Lowestoft was Will and Ellen. Cancer has changed my priorities whether it is 6 months, 16 months or 6 years I have left here they will come first. I think that is why I feel sometimes I am destined to be single.

I had one thing in the World, I hate, Cancer, I fucking hate it. It is like a predator that sneaks up to every waking day. You park it but it reminds you when your sleeping, drinking, eating, walking, siting, and running. I need to run to help those never go through the pain.

I had a long discussion with Sarah tonight who said that people would not think bad of me if I pull out of the CR race on Sunday. I must admit I felt stressed, tired and certainly no fit shape to run 10k.

I have been thinking hard all day one to sleep on.

Night

Ferryman

Denver Clinch

2006-03-28T00:01:00.000+01:00

Fact of the day: 27% of women in Congo have Aids that is 760000 women; , 40 % of women. The country is too poor to buy antiviral drugs at a cost of £100 million, £100 billion the cost so far to the World of the Iraq war in military and rebuilding costs! Nice one Tony!

It maybe early but the man sitting opposite me on the train is called "Denver Clinch" well that what it says on his name badge. He proudly displays his name badge as an employee of Transpennine Express Railway Company. Denver Clinch could be one of those names that rugger club lads make up, you know like "Mike Hunt" work that one out yourself.
I am en-route to Grimsby, alas at Manchester Airport it is the only destination missed off Transpennine Express advertisement embellished at every opportunity throughout the airport. It is not even advertised on those head high adverts above the urinals that have developed in recent years from the "Happy Driver" range of Motorway service stations offering you the opportunity to purchase new car number registration plates. The one thing I am sure the happy marketers in their "apprentice" style suits and egos forgot to work out that whilst you were reading their stupid adverts you are weeing on your foot!

Doh, you’re fired!

I spent the weekend with my treasures, loves and angels. Of course my children are my treasures and loves, but hey like any other 4 and 7 year old they are certainly no angels. I like that, it is how they learn right from wrong and how they develop as brother and sister. Of course they drive me crazy, they drive their mother crazy but so what I am sure I did with mine. Although I had nothing to do with the sectioning of my mother under the mental health act, do not laugh it is a true story!

I now fully appreciate how hard bringing up children is and what challenges they present. I am under no illusions that they are at you all the waking hours even when they find their own space it is difficult to switch off. Their mum is a martyr to the cause of motherhood. I have no time for "fathers for justice" and other such groups many of who attempt to play the victim in their relationship breakdown. For years, centuries the male race through macho dogma and violence has gone around swaggering it’s testosterone fuelled passion raping, pillaging, beating and disowning their responsibilities of fatherhood.

Many mothers have been left alone with children, without house, money or a chance whilst seeds were sown or some other poor faceless women has adopted the burden of these selfish men. History is littered with horror stories about man’s brutality to women, and we all single mums now left in abstract poverty by irresponsible men whilst their lives are rekindled and disown their own flesh and blood.

Of course life is not all one way and of course a minority of men have been and will be victims but alas it is the price our race has to pay for the horror, brutality and downright selfish behaviour of the male species since life began.

Keep attacking
Ferryman

Trebles all round!

2006-03-27T14:56:00.000+01:00

Fact of the day: £1.25 million given by CEO of Capita to the Labour party, £1 billion the estimated value of government contracts awarded to Capita last year. Say no more squire!

If I were a sixty six year old athlete with a passion for bus travel and champagne I would be rejoicing today at the news from the chancellor that we would be better off. I wasted sixty minutes of Gordon Brown delivering his budget speech and realised I did not understand a bloody word he said.

I was waiting for news on my pension, I have a self invested pension which I can access early plus the lump sum £12.50p after April 6th. I was trying to ensure that Gordon did not lop off my opportunity to retire early on my pension of £3000 per annum! The penison things does not inspire me, but all I know is that it is an asset and it is mine!

I had some good news today that I will move on from my lofty pitch here on the banks of the River Humber and relocate to the Wash, well Suffolk for my next assignment, which fortunately FLYBE locost airline, an oxymoron there somewhere, operate to Norwich international airport. I have been working in Grimsby for the last 4 months, it is no paradox, it is called Grimsby, after all you can still buy a three bed roomed house here under £80k.

The people are great, I work in an all woman office, it refreshing to work in a enviornment which is not challenging, caring and fun.

It will be sad to leave Graet Grimsby as I wanted to prove I could work again. I am pleased to say the answer is yes and how rewarding is that.

Keep attacking!

Just give me your Fc?ng money

2006-03-26T14:54:00.000+01:00

I would like to take this opportunity to thank those who have sponsored me, with just 6 days to go I need your help to raise just £140. This will mean that I have raised with gift aid over £500 which is amazing considering just 8 months I would have never considered being ever able to run again.

I know money is tight but just £2 will go a long way to helping eradicating this horrid illness and gives others a prolonged life with familiy and friends.

On Sunday April 2nd 2006 I will running Cancer Research's "race for life" 10k, at Powderham Castle, Starcross, Devon.After my struggles to combat and beat mouth cancer in 2005 widely documented in my online blog "The Ferryman's column" It is the least I can do to raise just £500 for vital cancer research in a race in my own village. I am 8 months out of horrifying cancer treatment which will affect my life for ever.

I am using justgiving a well known charity website where the money goes directly to cancer research. I am nearly there with £300 collected and over £75 in gift aid all I need is an extra £125 in sponsorship to push me over the £500. Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: Cancer Research UK will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

You can donate online at: www.justgiving.com/ferryman

Many thanks for your support.

Nigel "Ferryman" Gooding

St Patrick's Day - 12 months today

2006-03-17T21:39:00.000Z

Fact of the day: 600 hours parliamentary time spent on fox hunting, 6 hours spent on the invasion of Iraq - nuff said!

12 months ago today I was leaning against my neck and found a lump, you know the rest.

This week has been very strange, it started badly with a sharp stabbing pain in my left shoulder which contorted with pain. I was locked for 30 minutes just unable to move, muscular I think but who knows. I was in Paris feeling helpless miles away from the safety of the Royal Devon & Exeter Hospital. An internal pain comes and you feel the worse, it maybe muscular but we do not have x ray vision.

My trip to France was tinged with sadness, my ex partner told me that she was dating again before I left. We had a long chat and I gave her the benefit of my wisdom. I wished her luck. Why should she not date after I have and do, it was just the stark realisation that closure was taking place on a period in my life.

In the last 12 months I have been close to closure, my death, other peoples deaths, people died overnight in the ward I was in, alas closure became clinical, but not this closure because of course it involved the most important 2 people in my life, William and Ellen. I wish I tried harder in my relationship, I wish I had not realized I was doing too much and walking away by, stealth from the family I loved so much. I wish I never ran ever ran a recruitment company or became involved with Dawlish Town and wish I had the courage to stay and work it out. It maybe the past but boy it still hurts and now it is closed and I need to move on. My one regret in life.

I can count my lucky stars that I have had 12 months extra life, when the odds are 2-1 against me living 5 years. I have become a better person, realising the strengths and qualities I have, be quixotic about life and death and alas more selfish about me.

There are some good things I have virtually given up drinking, wine burns my mouth, it is like drinking battery acid, my tongue sets on fire and my left gum expands with the pain and the heat. As for beer, some does the same, I may have the odd pint of guniness but my drinking days are history. This week I have been beating myself up about the causes of my cancer, was it the drink, smoking pubs, or just bad luck.

Life moves on for me I have no idea, all I know is that I have 2 days with my children this weekend and nothing makes me smile more.

Keep attacking

The Ferryman

Cancer research 10k

2006-03-01T14:08:00.000Z

On Sunday April 2nd 2006 I will running Cancer Research's "race for life" 10k, (6.25 miles) at Powderham Castle, Stacross, Devon.

After my struggles to combat and beat mouth cancer in 2006 widely documented in "The Ferryman's column" It is the least I can do to raise just £100 for vital cancer research in a race in my own village.

www.justgiving.com/ferryman

Donating through this site is simple, fast and totally secure. It is also the most efficient way to sponsor me: Cancer Research UK will receive your money faster and, if you are a UK taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

So please sponsor me now if we raise just £72 through gift aid we will have raised £100. This will help others hopefully never have to go through the horror of cancer.

Many thanks for your support.

Nigel "Ferryman" Gooding

6 months on!

2006-02-25T22:46:00.000Z

Friends it is six months on from my treatment finishing, my mouth is still sore and my neck hurts when I am tired.

I have no need for pain relief and I am living life.

In the past week I have taken the children to Butlins, and type this message from an Edinburgh hotel following England's shattering defeat at the hands of the Scottish.

William my son is here and we have had a great time, life ain't easy, but there again it is not meant to be.

I will kick off the Ferryman's column again as I want to be an inspiration to those who need help, yes you can survive, yes you can beat, and yes you can live.

Night night Nigel

Head and Neck clinic results - Merry Xmas

2005-12-21T20:20:00.000Z

I hope you are well and as you see I am winding my postings down.

The blog served as a useful tool when I was ill and hopefully kept you informed and smiling in what was the crappest period of my life.

I need closure, however it does not come easily. Yesterday I felt a pain in swallowing, in my right neck area, felt and thought I could a lump! You can imagine the pain and horror that went through my mind. It was lower than the lymph gland and accompanied a sore throat. I was lucky as only had one day to wait to see a Dr at the specialist clinic.

Unlike the other lumps it is painful and sore. The head and neck clinic of 10 people has been scaled down to one young Dr obviously thinking I am getting better. He examined the lump, my mouth, throat and usual suspects before saying it as a salaviary gland and not to panic.

I did and will :)

Anything else was fine and I can enjoy christmas, is that an oxymoron or just a contradiction in terms :)

Happy Christmas thanks for all your love and support.

Nigel

Mouth Cancer awareness week

2005-11-14T11:24:00.000Z

As you know I have the tendancy to be competitive, in fact I have said before buying a tube ticket is a sport for me and queing for a bus resembles the opening of the sale doors at Harrods.

This week is no difference. I have managed to get myself on Sky news radio, Gemini Radio, Devon's local independent local radio station and the Exeter, Express and Ech, no not through the court circular but speaking of my experiences of mouth cancer. In essence I see the campaign as important and if I can help one person nmot going through the shit I have been through then I have suceeded. It means closure for me.

Oh and of course I beat Mr T Griffin to local fame through more press coverage and my ex partner who on recent weeks has appeared on Home Truths and in the Guardian!

:)

Mouth Cancer Foundation Press Release

2005-11-02T20:03:00.000Z

Mouth Cancer Awareness Week – November 13-19

CASE STUDY – Nigel Gooding - Exeter
Date:

Release: Immediate

Local man fighting back from deadly disease: “My friend saved my life!”

Mouth cancer kills one person every five hours in the UK. In addition, one in two sufferers dies as a result of the condition. However, with early detection survival chances increase significantly.

It was in March this year that 41-year-old Nigel Gooding first became aware of a small lump on his neck. He had leant his hand against it during a trip to Cheltenham Races and booked a doctors appointment when he got home.

Due to his flu like symptoms, it was originally thought that Nigel had mumps but with the lump on his neck still there two weeks later, his friend Nicola began to worry.

Nigel commented: “I am a single man who lives alone, but with two children who live with their Mum. I was not going to go to the doctors again to get the lump checked, but my friend Nicola begged me to go. I am so indebted to her. I have read statistics since that single men have less chance of survival with cancer because there are no partners to nag - so thank you Nicola!”

On Nigel’s second visit, the doctor expressed concern that the lump was in the wrong place for mumps and sent him straight to hospital.

There followed six weeks of tests; including two needle biopsies of the lump, a CT scan, a head x-ray, MRI scan and an endoscope of his throat.

In May, Nigel was admitted to hospital with a small tumour on his left tonsil. Diagnosed with cancer, he underwent a radical neck dissection to remove the lump, with intensive radiotherapy and chemotherapy sessions soon following.

He continued: “The specialists had no idea why I developed mouth cancer. I have never smoked. In addition, I spent much of my childhood and adult life keeping fit and running half marathons, as a reaction to my father’s heart disease being caused by smoking.

“Like most, I do enjoy a glass of wine and, like most, I have overindulged on occasion – but I am not a heavy drinker. I was told by the specialist that 25 percent of people who develop mouth cancer have no link to the major risk factors.”

Nigel was speaking the run up to Mouth Cancer Awareness Week (November 13-19).

The main risk factors of mouth cancer are smoking and drinking to excess, with people who do both being up to 30 times more likely to develop the condition. However, this year’s campaign is using the tagline ‘It Could Be You’ to inform people that the condition can strike anyone at any time.

Men are twice as likely to develop mouth cancer as women, although the ratio of women to men suffering with the condition has grown by a third in the last 10 years.

Nigel only discovered the condition a few months ago, but it has already had a very major effect on his life.

He said: “During my radiotherapy and chemotherapy I could not eat. I went eight days without eating, because my mouth and throat was burnt internally and chemo made me feel sick. I had to be fed through a tube via my nose and even drinking water caused tremendous pain.

“The first four weeks after treatment my quality of life was one out of ten – now it is closer to eight of ten, and I have even managed to get back to the gym!

“Of course when you have cancer you go through the normal questions – why me? How me? Have they got it wrong? Am I going to die? It was tough on my family too and had a big effect on my children.

“I am on the road to recovery now though. I still face the possibility that cancer could end me life at 41 but I have more purpose know. I value different things to what I did before cancer.”

Dr Carter, chief executive of the British Dental Health Foundation, who co-ordinate the awareness campaign, commented: “Early detection is the key to surviving mouth cancer, so we need to be examining our own mouths regularly as well as maintaining regular visits to the dentist.

“Look out for any unusual lumps or red or white patches in the mouth and if you have an ulcer that hasn’t healed after three weeks, get it checked by your dentist or doctor immediately.

“Self examination is now the norm for breast cancer and testicular cancer – it needs to be the same for mouth cancer.”

Members of the public can show their support for increasing mouth cancer awareness by purchasing the Campaign Blue Ribbon pin badge. The ribbon is available for only £1 including postage. Send the donation with a SAE to British Dental Health Foundation, 2 East Union Street, Rugby, CV22 6AJ. The money raised from the sale of ribbons will be used to expand the Foundation’s work on improving awareness of mouth cancer, which could save lives.

Mouth Cancer Awareness Week is coordinated by the British Dental Health Foundation, supported by Denplan, and backed by a wide range of leading national health organisations. These include Action on Smoking and Health (ASH), British Dental Association, British Association of Head and Neck Oncologists, British Association of Oral and Maxillofacial Surgeons, Cancer Research UK, the health departments of the four UK countries, GKT, Mouth Cancer Foundation, Pharmacy Health Link, QUIT and Scope.

ENDS

Best mate and pheasant RIP

2005-11-01T21:57:00.000Z

I really hope the pheasant that shattered my windscreen today enroute to watch Horse Racing at Exeter died quickly, the thing nearly made me late for races, thank goodness it was only 4 miles from my house to the track. It was even more ironic that the bird died less than half a mile from my house.

I made the decision to crack on the racecourse to witness the return of Best Mate in the Haldon Gold Cup. The rest is history one minute he is being pulled up, the next minute he has veered in front the last fence and collasped. We all stood and saw the screens be erected. Here was a national treasure half a mile away underneath the screens. The jockey and Hen Knight walking away, his jolly owner walking away in tears and all of us stuck to our binoculars as the horse ambulance or hearse pulled up neck to the screens. The ambulance pulled away and you could not see a horse walk in. The king was dead. The presentation took place then Vickki Robinson the normally storic friend of mine announced to the crowd that the king had died she was in tears, as were people around me and yes I wiped a tear away from my eyes.

For many it was their first site of a horse that have given millions so much fun through his horse racing and charity work. I cannot explain the air at Haldon, for just a moment life did not seem real, it felt surreal, racing was unimportant. He had died in front of his worshippers rather than an empty paddock. Tonight he will be buried at the last fence, may he rest in peace, unlike the that BLOODY pheasant!

Day 69 - Head and Neck clinic results

2005-10-25T16:28:00.000+01:00

Well today is rather strange, it is 6 years to the day that my father died but here I am celebrating being given the all clear from Head and Neck clinic. I have to return in 2 months time, which means it is my second month cancer free.

I left the room wanting to cry, full of pent up emotions and nervous energy I walked out and drifted around the hospital corridor not in celebratory way but a sense of huge relief sweeping over me.

I tend to put cancer to the back of my mind now and try and live for the moment, it is something which makes me look over my shoulder everyday but not for too long.

Just as I shed a tear for my dear dad this morning, they get shorter every year as time makes a great healer.

Keep attacking! N

Days 61 - 68 - Head and Neck clinics

2005-10-24T08:14:00.000+01:00

Today is my second head and neck clinic. The last week has flown by, I been to London, looked after the children and returned to gym all with no ill effects. The mouth ulcers are going and quality of life has improved no end in the last 7 days.

I feel I have my old energy back and after having my medical assessment before joining the local gym, my blood pressure was on the slightly above average not suprising when you consider the summer I have had. Most of which was spent on my back either in my bed or a hospital one.

I have not worried about my visit today I suppose more to do with being busy than over confidence. I remember saying after I had done a huge walk in May before I knew I had cancer saying "there cannot be anything wrong with me if I can do this walk" I never ill before and its the same now. Of course my shoulder hurts, of course my mouth still reminds me of the RT and chemo however my general health feels quite good. I am keeping my fingers crossed but will find out today.

N x

Day 55 - Day 60 - Life goes on- some thank yous

2005-10-16T19:16:00.000+01:00

Well it is nearly a week since I posted here. Why the delay, well I suppose it is about having something witty, fun, or morose about my own condition to say.

I had another week of work and spent time in London. I witnessed Beaver Cars in action on my long train journey and managed to have a row with queue jumpers at the Odeon trying to get into see Wallace and Gromitt at the Odeon. Having the energy to challenge is a sure sign I am getting better!

I am very tired each evening, it is a different sort of tired my body aches and the yawns cause me problems. Yawning can be quite dangerous, you see I have no muscle structure on the left side of my neck so a yawn tears at operation lines and tends to cause the left hand side to freeze imagine doing driving. I have your whole head goes into spasm and you cannot move it looks hilarious to onlookers but its bloody painful and a tad dangerous at 70 mph, ok 55 mph in the camper! I lied.

I have however never taken cocaine for the record! Just in case I get called on the stand for election in teh next few months.

I can deal with the tiredness = sleep however there has been a marked change in the last week. Since RT finished I have been dribbling at night getting away without having a dry mouth, however in the last week there is no saliva left in my mouth. I tend to awake about 4am with a dry mouth it has no fluid in it at all and your throat, tounge and mouth feel like they have seized up like an engine with oil. I combat it with water, oral saliva replacement gel, but these tend to only work about for about 3 hours so my sleep is broken and when I wake up it is very uncomfortable as my lips are coated with a white film and prising my lips apart is quite difficult. Throw in my sore shoulder from the operation and the first 30 mins of waking up are pretty poor.

Things have improved on the ulcer front I am checking it everyday it seems to subsiding and the only problem I tend to get with it is during those dry mouth nights where it is exposed to air and boy does it remind me it is still there.

So things are generally good at the moment. I have lots of thanks to say to people and I am not sure how to say them and show I mean them. So over the next few weeks I will cut down the postings to three a week, unless anything dramatic happens - like my next Joint Head & Neck Clinic on the 24th Oct! I will however be saying thank you to lots of people for being my friend, loyal and there for me.

Day 52/53/54 Cornwall

2005-10-11T20:55:00.000+01:00

I cried when I left Cornwall, not because it was pouring with rain but because it holds so many happy childhood memories for me when we were a family and I was protected. It was West Cornwall I fell in love with many years ago, playing with gay abandon in the sand dunes and rock pools and hoping my children will have the same experiences.

I cried because I did not want it to be the last time I ever saw West Cornwall. I get like that fear of the unknown always in the back of your mind a slight doubt will the cancer return. I am taking the children at the end of October back, so why the tears? Who knows John Peel use to cry after Little House on the prairie and Sheila use to comfort him, so if its good enough for Lord Peel its good enough for me.

The break was well deserved, no driving and very relaxed.

I struggled at meal times mainly due to "new English menus" which does away with gravy or sauces with meals and leaves a dry dish to attempt to squeeze down with lashings of water or in my case beer. Ok it was not lashings but 2 pints one night, which took me three hours to drink whey hey!

They are trying to extend the Tate gallery in St Ives into the car park, destroy sea views of local residents if they cannot extend they will have to close, so the Tate story goes. After paying £5.50 to view 6 pictures of local St Ives artists, and 2 floors of a radical Berlin artist whose name forgets me, but 10 years ago in less politically correct times I would of called Helga I struggle to see what all the fuss is about. The main reason for extending is so that they can cater for more people in the overpriced cafe, which took 30 minutues to serve up a fairly bog standard cafe mocha, all for £2.50. I have often wondered how the beast of Porthemoor Beach was able to get planning permission in the first place considering it has all the beauty of a hermit crab without its shell!

One of the exhibitions was a 16mm film of a working revolving cafe in Berlin. The camera was stationary and the cafe revolved around. The pictures were blurred and did not even show you the view from the window!

It is not the first time I have beed perplexed, or ripped off by Tate modern in St Ives, the secret is find something else to do if its raining in West Cornwall!

Day 48/49/50 - Normality

2005-10-07T09:21:00.000+01:00

It is Day 51 and this afternoon I am off to Cornwall for a short well earned break.

I survived my first week back in London. I ma working from home today which takes a little of the physical pressure off what has been a tiring week. My main concern was my voice standing up the rigors of full time work. I have been able since Sunday to find enough potions to keep my horrific tounge ulcer at bay to enable me to eat, drink and talk. I must admit with the various cocktails of potions quality of life was pretty poor.

I must admit I did not expect the welcome back I got. People who I had hardly known shaking my hand and hugging me, there was a genuine welcome for me which was very emotional. I felt safe, well looked after, comfortable which in a city such as London is a blessing.

I am off to Zennor later today, still yawning, still tired but I am sure a couple day in South West Cornwall can only be R&R after all treatment finished 51 days away and still the after effects of chemo and RT linger on.

N x

Day 46 - Beavers!

2005-10-03T15:45:00.000+01:00

When starting in business naming your company is always difficult, its easy if you are called Mr Sainsbury or William H Smith but I must admit naming a company has always been a challenge to me. That’s why I admire the owner of the most inappropriately named taxi company in the South West. The award goes to “Beaver cars” of Sherbourne.

Now can you imagine calling Beaver Cars after a good night out at the Sherbourne Conservative Association tombola and charity race night, only to be greeted by the taxi co-ordinator at the other end of the phone saying “Beaver here how can we help” Now you would think you had one glass too much of Mrs Beekeepers home made sherry. Now Dorset is not known for its legends but I suspect there are no wild beavers within 5000 miles of Dorset or in Zoological gardens in the County but for some reason the people who started the company decided to call themselves Beaver! It’s not even a clever marketing tool. If you’re a taxi company call yourself Aardvark Taxis to get yourself the first listing in the Yellow pages, but Beaver cars in a small sleepy Dorset Town I am sure there is some answer to this amazing piece of mystery. I think there is some pun that relates back to the sexual connotations of the alternative word for Beaver, but I have yet to work that one out.

How do I know all these interesting facts I hear you ask. Well it’s looking out the train window en-route to London. I have started back to work today and travelling to London. We are lucky in the West Country there are 2 routes to London from Exeter one can take. The London Paddington route which can be only 2 hours on a fast train or the London Waterloo route, which calls at a mammoth ten stations before depositing me three plus later in South London. I do prefer the latter route it has a more gentile, sedentary and relaxed view of life about it. The route is patronised by a more elderly population than the Paddington route and stops at such hip places such as Yeovil, Sherbourne of course and Andover.

I call it the elderly line, I did not realise how many old people actually lived in East Devon, Dorset and South Somerset. However, regardless of their age they still manage to indulge in the tactic of surrounding themselves with books and papers to bag the table of four and make discouraging noises to prevent young whipper snappers parking myself next to them and upsetting their neatly arranged piles.

The train journey and my fellow occupants reminded me of the Alan Bennett story where he said you cannot imagine Ryan, Brittany or Jordan being in an old peoples home suffering from incontinence and forgetting their name. Only Gladys, Walter or Ethel find themselves in old peoples homes.

I enjoy rail travel my day dreaming of Beaver cars and old people has more to do with my 1st real day back at work, one which fills me with trepidation and joy both at the same time :)

Day 43/44 More remission

2005-09-30T21:02:00.000+01:00

Its been a strange week with the events of Monday fresh in my mind, and things definately healing at more rapid rate than previous weeks. Ok my mouth is still playing up and my favourite tounge ulcer is a real bind despite the lotions and potions.

At some stage I must accept life has moved on from those terrible days of the summer and life has a future. I go to London next week with a hint of trepidation, I bought a new suitcase today, not because I wanted to take more clothes but to take all the lotions and potion with me. I must admit I have booked a comfy hotel and now that I am eating as normal as I can under the circumtances and feel I will manage.

Day 41/42 - Remission

2005-09-28T11:45:00.000+01:00

It is 6 weeks since treatment finished and yesterday someone told me "remember your in remission" Remission is such a vauge word but it means well you maybe cancer free now all your treatment has finished, but we do not know yet.

The fear of the unknown has not stopped me feeling the best I have felt for 7 months. Internally I feel fine, lots of energy eating well, and I suppose wanting to get on with my life. The mouth sores are under control will various potions, hurting ocassionally at the end of the day but the pain is certainly reducing.

I have for the last 2 days noticed a distinct change in my life, very similar to right I can now start planning 3/4 months hence. When you are going through treatment there is no time or will to plan for the future because you have no idea how you may feel or what appointment you have to fufil, now that channel is clear and life has taken a more appropiate form.

Life still amuses me like yesterday the man who called me and told me that he had viewing my website and wanted some advice. I assumed it was cancer advice, but no he said: " I have been viewing your site and can you give me any information on callouses on the knee as I injured my knee walking in the Bulgarian mountains" At first I thought it was a joke, or some sort of code"we have been walking in the Bulgarian mountains" alas he was deadly serious, so I packed him on his way with plenty of rest and daily asprins :)

In reading an article written by John Diamond for the Guardian before he died he summed up my thoughts about the future and life:
This is what it's all about. It's about reading a paper on a Sunday morning while you're thinking about whether you can be arsed to go to the neighbours' New Year's Eve party tonight. It's about getting angry with me for having different opinions from yours or not expressing the ones you have as well as you would have expressed them. It's about the breakfast you've just had and the dinner you're going to have. It's about the random acts of kindness which still, magically, preponderate over acts of incivility or nastiness. It's about rereading Great Expectations and about who's going to win the 3.30 at Haydock Park. It's about being able to watch old episodes of Frasier on satellite TV whenever we want, having the choice of three dozen breakfast cereals and seven brands of virgin olive oil at Sainsbury's. It's about loving and being loved, about doing the right thing, about one day being missed when we're gone.

And that's all it's about. It isn't about heaven and hell or the love of Christ or Allah or Yahveh because even if those things do exist, they don't have to exist for us to get on with it.

It is, above all I suppose, about passing time. And the only thing I know that you don't is that time passes at the same rate and in much the same way whether you're going to live to 48 or 148. Why am I happy? Because I'm alive. And the simple answer to the question 'What the hell is the point of it all' is this is the point of it all. You aren't happy? Yes you are: this, here, now, is what happiness is. Enjoy it.

Day 40 - Joint head and neck clinic

2005-09-26T16:53:00.000+01:00

I promised to update you and boy what a relief. The feedback from this afternoon's joint head and clinic was;

I quote the consultants "the Max Fax Consultant said everything looked good mouth and tonsil, and progressing as we would of hoped, the chemo and radiotherapy consultant is happy to way the treatment went" come back in a month, we will arrange a scan for 3 months time.

Good news indeed, you can imagine the sigh of relief I am feeling. The scan is the all important indicator but we will have to wait a few months to make that judgement.

Nigel

Day 39 - Tomorrow

2005-09-25T18:13:00.000+01:00

I set the alarm early as William and Ellen now have swimming lessons on Sunday mornings, fine in summer but what happens when its cold in Winter?

I spent the day dreaming, tomorrow afternoon I have my 1st joint head and neck clinic, it is the joint clinic where the oncologists, ENT, and Maxfax consultants assess their work and my treatment. I am sure the scope will go down my nose into my throat and a poke around will take place. I am sure there will be prodding, pointing, and saying ahhh a lot and hopefully I can get a third opinion on my mouth ulcers.

It iss early days yet but they will be able to view the tonsil area and look at other signs whether the treatment has been sucessful. There is one word I will not hear tomorrow or perhaps ever, and that is cured. I will of course let you know how it goes :)

It is a known fact that 33% of patients, 1 in 3 have a 2nd cancer within 2 years. That is a massive figure and one that ways on your mind. You just live with the view that I am in the 67 not the 33 out of an hundred and it does not seem so bad.

Day 38 - Children

2005-09-24T23:03:00.000+01:00

I would like to thank my good friend Jan and her two year old daughter, Tallia for the great time we had at her party today. It was the first opportunity I had since May to have both children stay with me overnight, and too be honest I was very scared that I may not be able to cope and take on too much.

The party enabled the children to let off steam in a controlled relaxed enviornment they had great fun and so did I. I was able to relax and scoff all sorts of rubbish which included skips and chocolate biscuits!

I felt very emotional being with my children. Life is terminal event, but I have realised over the past 6 months that my purpose in life is to impart love and affection to my children in the time that I am here, whether that is a few years, ten, twenty or more my purpose in life will be to ensure I give my children maximum love and attention.

Cancer makes you refocus your life and sort priorities out. It gives you time to face yourself and say what do I really want out of this fragile life, a life which still has years to run if I have my way.

Day 33/34/35 Holiday views

2005-09-24T09:35:00.000+01:00

I must admit I have always thought of South Wales as an industrial bomb site, mainly through my time there in the 1980's and 1990's however I must admit the Black Mountains and the Brecon Beacons are a wonderful part of the World.

If you add in Hay on Wye, Brecon, and the great woodland drives the countryside the place has a powerful beauty. The hills opps sorry mountains are stunning they are powerful and massive they show the carving out done millions of years ago in all their beauty.

I was not strong enough this year to walk them but next year I will be strong enough to march along the huge plateaus and admire the views.

We were lucky with the weather, warm and indian summer and I was well looked after by battypat and Ron.

I enjoyed the time away it gave me time away to comtemplate lots of things, life, me, my illness and my plight. Life deals us many challenges and I see cancer as just that, the tounge sores are a by product of my treatment, and boy did they make themselves known this week. It was the end of the day when they made their real impact, the pain was unbearable and two nights I reached for the morphine to help me sleep. I must admit the break did me good and left me relaxed and mellow.

I had time to think about me. I am angry, why me, why now, if only I had 10 more years before having to deal with this dreadful illness my children would of been young adults and I do not have live with this fear for the next 10 years. I have read accounts of oral cancer patients who say in 6 to 12 months time you feel that the treatment and cancer was like flu and you look back and think wow I am glad to be alive. I count the days off until that day.

Day 32 - Holiday pains

2005-09-19T09:32:00.000+01:00

I am painfully aware that life is a terminal illness. Life is not an infinite span of time we have here but a small snapshot of life, which needs to be lived and seized with both hands. On Sunday afternoon I thought my time had come. One thing I am starkly annoyed at about cancer is that before May I always filled out those medical questionnaires saying, no and nothing in my medical past. I always wanted some sort of choice when I went in 30 plus years time, but not to have to face my own mortality in such a short scale of time.

On Sunday afternoon I was driving my beloved Lizzie to Pandy, a small campsite nestled in the Welsh Black Mountains, close to Abergervenny. After 90 minutes I had reached Bristol. I was aware that I had stomach pains, which I put down to indigestion. I went over the new bridge into Wales and realised that my whole upper body was wracked with pain, my back was tight, and my stomach muscles, what is left of them had gone firm and there was a stabbing pain in my back. I managed to get to Magor services on the M4.

I really thought my time had come, I was alone in the lorry park of a bland M4 car park, my body was shivering and the muscles tightened. I worked out I was not having heart attack or stroke as the pain was restricted to my below my chest, however the stomach cramps increased. I thought is this cancer inside I did not know about. Its normal to think every minor illness is serious now, despite the fact its not connected. I found some morphine and most proberly had too much but within 20 minutes the pain had subsided and it was clear that I would not be ending my short life in an M4 car park. Of all the places to go an M4 service station!

It is clear that the pain was muscular, bent over and driving a van with no powered steering. I had done too much. I should have done the journey over 2 days or 2 stages I pushed my tired weak body to the limits. I arrived relieved to see Ron & Pat and the dogs and the pain melted away.

The night was quiet and relaxed, in fact I needed to rest and you can imagine when I hit the pillow I slept soundly will not ill effects from my traumatic experience. An experience, which I will not be repeating!

Monday 19th September 2005

I slept well there is something very therapeutic about camping, listening to owls as you snooze, the turmoil of the last few weeks sleep forgotten as I slept, only to wake at 6am on my body clock hour. I was able to snooze until 0730 ish when my book took over.

I am reading the girl in the red coat by Roma Ligocka. Roma was jewish, five and lived with her family during the 2nd World War in the Krackow getho. The book is a history of her childhood avoiding detection by the Germans whilst struggling to survive in the most degrading and awful circumstances. The book is one of those you cannot put down once you pick it up. The book makes you realise that perhaps things are not so bad when you consider what children went through during those terrible days. Living in constant fear of death at the hands of the Nazi death machine.

Day 31 - We are all tired

2005-09-17T20:54:00.000+01:00

I eventually got up from bed at 1000 this morning a record for me in recent weeks this after falling asleep at 2300 waking up at 0630 and snoozing until 0800, which is unheard of. It was clear that my trip to London had tired me out, but I was not the only the children came round and it was clear that they were suffering from the first week back at school so as you can imagine it got all tired and emotional!

The camper van is packed and stocked up with food and ready to roll for a few days away in the Welsh borders. It is my first holiday this year I had a holiday booked in Eygpt the week the lump was discovered but a CT scan was booked so I had to cancel.

I have been feeling uncomfortable all day primarly due to the state of my mouth ulcers, avioding talking help and I am able to put my tounge in a comfortable position, but boy it hurts when eating certain foods as you can imagine.

Im off to plan my route the chances of the camper getting there in one piece would be good odds at the bookies.

Nigel

Day 30 - London calling

2005-09-16T19:09:00.000+01:00

Look I know you are going to think I am mad, sad or bad but today I went to London.

I spent most of last night in panic worried about whether I would survive the day. I packed my rucksack with a handful of high energy and calorie medical drinks, bananas I had this thought that I would be stranded in the biggest City in the UK without the ability to find something I could possibly eat.

Mentally I was very nervous, but for the record I catch a local service to Exeter from Starcross then the 2 hour fast train to London. I worked out that if I played things right the maximum walking would be limited to stations and everything could be done by taxi. It all worked well until I got to Exeter meeting an old friend John Milton, John is in his mid 40s never smoked, does not drink and told me he is recovering from a stroke.

I sat there talking about life, inspiration and my sore tongue disappeared into insignificance as we both discussed the life changes we will make as a result of our illnesses.

It was good to back in the Lambeth fold, there was genuine concern in people eyes for me not sympathy but joy to see me back and starting to get back on form. The energy levels were good as I had paced myself and my fear of my brain being on form and up to work was soon put too the test. 2 hours of meetings and I was done, acquitted myself well and was able to get my points across and understood even with my slight lisp.

I returned to Waterloo where there is a through train to Starcross. I scoured the concourse but was unable to find an outlet that served soup. I panicked, would my ensure drink with its 330 calories and a piece of fruit get me through the afternoon? Then I thought sandwich, but my brain said pointless I would not be able to eat the bed it would be too dry. Then it came to me what if I choose a moist filling, egg Mayo, prawn Mayo, tuna Mayo, alas in my haste I ended up with salmon and cucumber on brown! I bought some water and thought I am determined to get this down and use all the water I did. Well I am pleased to say it maybe only a sarnie but it took me 20 minutes to eat the contents, excluding the crusts, but managing the bread. It was the 1st sandwich for 2 months I had eaten but meant that in the outside World I now know I can eat sarnies, preferably wet ones! It was a big step and one I was very proud of.

I returned home at 1800, 11 hours after I left, tired, happy and to be honest pleased I did today, tomorrow will tell whether I have overdone it I hope not.

Day 29 - It is all relative

2005-09-15T08:18:00.000+01:00

Feeling better these days is all relative whilst I amy look better, face less swollen, statue correcting itself, skin healthy, 10 kgs lighter I can assure you that my mouth is bloody uncomfortable.

The one bug that is plauging my recovery is a mouth sore/ulcer it was checked out last week so it is nothing sinister. The are a by product of chemotheraphy and radiotheraphy where the body cannot produce enough saliva to protect the mouth and repair the damage. Natural defences missing the RT has zapped my mouth and it takes time for the damage to repair, mild painkillers help but the sore on my tounge is just on the left jaw bone and affects speech eating and speech.

I can speak, its not painful just uncomfortable at times, a small price to pay I suppose to beating this dreaful disease.

As I get better one question looms in my head, why? I was so aware of health issues relating to heart, keeping fit etc I want to try and pin the reason for the cancer down to one reason. One tangible issue that I can prevent in my life from now on. It is hard because no one knows the reason, there is no reason at present I can only deduce that I sit in the 25% of people who do not smoke and got unlucky. I can cut out the 2 main causes of mouth cancer smoking and excessive drinking, and to be honest my attitude to smoke has always been abhorent, my attitude to drink is moderation, sensible approach and when you are ready your mental attitude will change.

My love of wine has finished, the tatse will leave burns on my throat, it looks like the only alcohol left that will go down nice is smooth beer such as Caffereys or Guniness wow life will be so hard!

Day 28 - Reflections

2005-09-14T09:47:00.000+01:00

Its day 28, one month ago radiotherapy finished, the induction of pain ended and recovery began.

I remember that last session, I was in hospital feeling pain, finding it difficult to eat, sleep, and drink, talking was hard and my body had been through hell. My mind was confused, would the pain all stop tomorrow because of the therapy was over alas no came the soothing responses of empathtic nurses looking into my eyes. I was attached to a syringe driver, a nasal tube and pain was high until the morphine cut and stopped the pain taking over my weakened body. I looked ill, people could tell then man had cancer and was unwell. My body was frail and the weeks of inactivity had made me weak. I had nasal drip and it made me cough up blood everynight and my mouth was full of mucus and a thick horrid phlegm. My bed clothes would show tale tell signs of large patches of fluid dribble through the night as my mouth dried out.

The skin where I had radiotheraphy burns was purple, and the skin has worn away, I was left with patches of raw skin which dressing would stick too and sympathetic nurses would change my dressings everyday.

One month on, I am sleeping, at least 6/7 hours passes my body each night. I can eat, soft foods only, but back in control of my own destiny in the kitchen. The only pain I face is through talking because of a radiation mouth sore which is going. The tubes and syringe driver are gone as is the morphine. The look in my face is of being content and my eyes no longer have that zombie look. My body is beginning to find a definition and walking is now becoming easier as distance increases. The nasal drip that would create so many problems is gone. I can swallow without bringing drinks back up and the saliva in my mouth is returning and the night dribble has gone. The morphine has gone and so as the anti sickness medication. I feel stronger everyday and able to lift, walk, laugh and yawn without feeling guilty, weak or in pain. The mucus has gone replaced by saliva. I no longer count off days and look forward to return to normality because I know I am on my way already.

My skin has healed and now I have a gentle pink halo when once broken purple skin exisited.

I know I am not fully over the side effects of chemo or radiotherapy but what I do know is that I am 100% better than I was this time last month, and this time next month will 100% further on. The mouth sores which are a side effect give me constant pain and trouble my eating and general well being including talking!

On the 26th September 2005 is my next big day, the joint head and neck clinic where I find out just how well the treatment has gone, its a day I am looking forward to as I know I have made progress and I know the treatment has worked!

Have a great day

Day 27 - Ellen and her first day at school

2005-09-13T09:57:00.000+01:00

I have just returned from Exminster and taking Ellen my just 4 year old daughter to school for the 1st time.

For those of you who do not have children it may seem a small moment, but to those who who have children it marks a progression in their lives and those of their parents.

Dressed in her school uniform, handing her over to a complete stranger she who you just met 24 hours earlier and ready to grow up at just 4 it makes you emotional.

I wanted to cry, my emotions were running high in the classroom, the torment of 5 months took me back to the moment when I cried when she was born. When I was lying in the hospital bed you would not imagine days like today. Special days, days when you cannot turn back the clock. They are captured forever on film and in my brain.

People are the most important thing in the World, my life has changed.

I love my children, love my job, love my life, and beginning to love me, why has it taken 41 years to realise?

Day 26, 21 days before normaility hits me - More cricket!

2005-09-13T07:40:00.000+01:00

Obviusly I was glued to the TV as the England team ground their way to a great Ashes victory. The day was fairly bland as is most of my food.

Eating is a chore, an exercise to ensure I get 2500 calories a day, add in 80 grams of protein and whatever I eat the exercise is purely one of calorie build. My weight is stable and I am working out what I can eat at the moment and what I cannot. Some food tastes normal, then 2 tastes later becomes bland and horrid, I have to forget food that is dry and concentrate on creamy sauces to accompany anything like pasta, but it goes down slowly. Eating is not fun at the moment, but life is, so eat boy, eat and look forward to your next protein full, calorifc fix of blended fun :)

The camper van has gone off to the garage after her MOT she has developed an untimely itch of cutting out every as you are driving along, sort of when she gets hot and bothered, not bad for an old girl by her. If I am honest she has been like it since I have had her but I have been to lazy to sort it, how things have changed. However, a clean bill of health before next weeks trip to Wales will be a tonic and safe in the knowledge that I will not seeking the help of the AA to get me home!

Must dash as its Ellen's first day at school today and of course I want to be there, and at her last day of school as well. I have to pick her up at lunchtime today and have an afternoon of looking after her, what a tonic when you consider what I have been through.

Keep attacking Nigel

Day 24 - Cricket!

2005-09-11T12:52:00.000+01:00

The whole country has gone cricket mad, it does help but I am quite fond of cricket and certainly beats buying a French cottage or a grandfather clock, but this is the last time I am likely to watch a series due to life moving on and lack of SKY TV.

Some weeks ago I told you ago about Horses, big swinging heads ridden by diddy men jockeys and ladies wearing fruit stalls on their heads. Well I was very pleased when BBC lost the rights to channel 4. For years I resented horse racing, Richie Benaud would be summing up the match situation you could tell when his Auzzie strains were just about to disappoint you. You would cringe when you heard him him saying, now with "England needing 7 runs to win and one wicket its over to Goodwood for the 3.15"

If you were lucky you could try and scramble your wireless to long wave, hidden amongst French radio and 1960s radio stations somewhere off the Azores. Once again we are faced with tiny Irishmen, a paddock full of women with fruit and veg stalls on their head and identical snorting horsey beasts looking for their next pray. Of course the very posh commentator trying to distinguish whose in the paddock and which beast is which. You would be lucky to see the race and work out the winner. Then back over to Richie by which time the man of the match presentations are over and Richie is bidding you farewell and we are in for an afternoon of racing or Western films. That is why I was pleased when Channel 4 won the TV rights, but bugger what happens they start to show bloody racing on Saturdays with John McCarrick, England's answer to a human windmill! Least Rupert will not be mixing and matching Cricket and Racing! Well lets hope, pass me the SKY application form.

On a personal front I had both children over yesterday for the 1st time since May. Now when they went I thought it was stressful, but then my good friend Jan asked me was it stressful before? I said stressful and hard work yes, so no different! It was clear however that they have grown up, they fought like cat and mouse but they are six months older than when it all started. Yesterday proved to me that returning closer to them is the right thing to do, the time on this earth is short and I hope am only half way through my life. Cancer gives you a different perspective on life, makes you stronger as a person, makes you more relaxed about little things, but alas makes you stressed about your health. I had to shout at William yesterday which was not a good idea as it hurt my vocal chords, put me back a few days.

My throat is getting better everyday but my vocal chords are very sore, talking for long periods needs lots of water I have managed to stay off the pain killers for the time being.

Eating is becoming fun, thicker creamy soups are going down well, scrambled eggs, milky weetabixs, real proper juices go down well and give me lots of positive vitamins. I need to get the soups to include meat and fish now to build up protein. My return to normality is governed by 4 things: Tiredness, this is being taken care of as my body now seems to be getting what I need and do not seem to be overtired, maybe because the body is not working enough, but we will soon see, Energy levels, If I am able to eat 2500 calories a day then my energy levels are fine. Food intake It is important that I am able to get food external of my house outside of here, and with numerous soft options available. Some people have tackled solid food before me but we have to remember for the last 5 months my mouth has been through a hell of journey. Pain My pain is under control at the moment and no painkillers are required. My mouth is dry and water is a must and constant mouth washing and watering will be required for some months to come.

I have posted that in 22 days I will return to work taking it very easy, no more long hours, no more burning the candle at both ends, more comfortable hotels and earlier nights. The first month working from home 2 days a week will give me a gradual introduction to work, but boy it will be good to get back to some normality. I will review this nearer the date but its good to set a goal.

Right off to Wincanton! Speak soon Nigel x

PS: I may venture out next week to a pub for a bite to eat, just soup or something soft, a big step at this stage returning back to normality!

Day 23 - Hospital outcomes

2005-09-10T10:46:00.000+01:00

Well day 23 after RT was a quiet one mainly through my failed attempts to sleep and my mind wandering. The trouble with things at the moment is my mind is back 100% although my body is not. They seem disjointed and on 2 different shelves.

I had a counselling session to deal with this and it was clear that I have moved on quite a considerable way.

In my body I know I am not as strong as I was and now building up strength through exercise. After my walking, I managed a 15 minute bike ride to Powderham Church and back and boy it was tough but had a huge sense of achievement afterwards. Tomorrow it will be 20 minutes, and today I will walk 1.1 miles or as its raining cycle that on the exercise bike that hides in my shed. Living in a three story hosue has its advantages as well as the stairs give me good step up regimes.

The hospital outcomes for my first check up showed good signs of recovery, shoulder and neck strong, mouth and teeth fine and generally diet ok despiet my reservations at first weight is stable and everyone is happy with what I am eating.

Eating is starting to become less of a chore, I have to put aside time to eat. time to prepare food, it has to be not too lumpy and not too solid but have managed a lasange yesterday all of 500 plus calories and numerous bits of protein. My diet needs protein at the moment so full fat milk, smoothies, ice creams etc are the norm.

I look forward to the day when I can eat a pasty or consume some toast, eat some chips or even bit an apple and get my mouth back into full action. It wil come when the slavia glands start working again so that food can be propelled to the back of my throat into my expectant tummy.

I watch TV and see people eating meals and feel like shouting stop it you are torturing me but I know its only temporary one day soon it will all fall into place and solid food will replace the slushy diet. Do not get me wrong the slushy diet is fine and gives me everything I need, but it takes 3 mins to make and 3 mins to eat quickly.

However, home made soups are really the answer and lunchtime means a homemade carrot soup for me.

Right the cricket is on time to get real, I think the country is cricket mad!

I am not scared to ask for help here it is!

2005-09-08T19:55:00.000+01:00

A lot of people have said if there is anything you want just yell.

Well very soon (Oct/Nov) when I move I wil need help packing, even if you could spare an hour to pack a few boxes for me I would be forever grateful!

Nigel

Day 22 - Hospial visit

2005-09-08T16:52:00.000+01:00

I am delighted to say that my hospital visit today went very well. We discussed the issues around tiredness, fitness, diet, and weight and its all gone well. I now have some sleeping remedy called nytol. It was locked in the cupboard so they must be powerful, the chemist quized me like I was some drugs baron and seeing wether they would mix with the other stuff I have been throwing inside my body.

I wanted to go home and take one but the fear of an early night and waking up at 2am buzzing stopped me. Its the first time in my life I am counting down the hours and awaiting going to bed, I really hope they work as to be honest I have not really slept since finding my lump on the 17th March 2005 imagine the exhaustion :(

Day 20/21

2005-09-08T10:19:00.000+01:00

As you get better you want to do more but it is catch 22 more exercise, more tired, more exercise more calories you burn. But getting on the scales this morning I was fairly fixed on 80kgs some where I have been for nearly 2 weeks.

I have read Bob Champions book and of course followed the plight of Lance Armstrong but I am aware of a healthy recovery needs good diet, which I now have, rest and recovery which I have the rest but sleep is still disturbed I suppose it will for a time, and exercise.

I decided yesterday to start walking again, a mile one day, mile and one tenth the next, one two tenths the day after. The whole aim to reduce stress, reduce time spent at home chilling, but putting it towards a good exercise regime. I will listen to my body, but my body is telling me you are getting better, but beware not to overdo.

So today I have walked 1.02 miles in 26 mins, stopping only twice to read things and over 2500 steps. I feel very proud of myself. In essence it is no more than I use to do but the time I get back to work in 25 days time I will hopefully up to 3 miles day. More than I ever use to do in a day to be honest at work.

I am no Lance Armstrong or Bob Champion but both of them showed early return to physical exercise was certainly mentally stimulating and stress relieving enough to help recovery. When I was running the endorphins realised were awesome and made me sleep for hours, one thing I would bag for at the moment is 6 hours sleep.

One of the things I find hard at the moment is the pain of people saying you look well, my voice gets croaky after talking too much later in the day and lethargy does close in, but that's what I want to help me sleep. My body is playing a trick at the mo in bed, when I drift off to sleep, a tickly cough appears, causing mayhem, so when I relaxed my body rebels! Although I find myself more laid back about day to day events than I ever was and clear that I have lost some of the stress before.

I am very excited about 2 new things in my life, one is a new house, madness I hear you cry the other is I am going on holiday! Yes a new house, well it is hard to explain but living in a fantastic rented house with great views is fairly awesome but its not secure as the owners could sell at anytime. The other benefit is that I will be closer to my children and of course in 6 weeks time I will be much better, fitter and sounder in mind with more of my life back. I suppose its about life changes I love my job and have no intention of giving up but the short time I have with my children at weekends its important to make the most of the time I have. In addition its mine a root, the long term survival rates for these things are good and with a settled life style things will be much calmer and cheaper!

I have booked to go away on holiday to Wales the week after next, normal holidays are out of the question because of my diet for a few months but one in the new improved camper are not. I have booked 5 nights away in the camper van and on the same site as my sister for the safety net I am sure I will not need but crucial support just in case. Its my first proper holiday for a while, and one week before my joint head and neck clinic when I will know whether things were a success. I am sure they will be. I have a yearning for my van to me she is normality and I like normality!

Day 19 -The tube is out

2005-09-06T22:20:00.000+01:00

It is out!

The NG TUbe, commonly known as the nasal gastric tube which ran through my nose into my tummy and sustained me all these weeks whilst my wrecked throat was unable to take food.

For the last 24 hours it was moving like a third being in my tummy, a bout of sickness displaced my tube inside. I was in agony, a quick call to Kevin who advisedd that I could just pull it out or get someone else to do it. now Oprah was here on hand looking like she was the girl for the job, ex farmers daughter however she did not fancy the yank and after a quick phone call to the out of hours surgery at the Hospital saw us enroute to convince a doctor to pull it out.

That was a trial telling them that I want it out, I can and have an Outpaitants on Thursday where the tube was coming out anyway, and no refrence to my notes was necessary all I needed was a yank. I was obliged by an on call Doctor who laid me back and pulled, and boy was it a scarely tingly experience having that pulled out. After all there was nearly a metre of cord and cable, although all plastic still very ticklish.

It left me feeling a little scared and knowing that food will be become more of an issue in the next 7 days as my throat heals. I have to ensure I take in teh protein and vitamins to aid recovery which is not easy when your food intake is limited to 35% of the total food market place. But hey I now have normality in my life no tube and just my life skills to depend on so we will soon see how I progress. I am keeping my fingers crossed but I have come this far and backwards is not an option as I comptemplate more cream laden bannana smoothies!

Nigel x

Day 16/17/18 Reality

2005-09-05T11:16:00.000+01:00

I had have a huge dose of reality in the last 48 hours, mainly I am getting better depsite a nagging little cold and secondly that in the next few weeks my life will continued as before if not stronger mentally and wiser.

For the last 24 hours I have had my son stay William, it was the dose of reality I needed to say hey Mister your alive, your not going to die, your going to be back on your feet pretty soon. On a personal level although feeling a little drained and tired,(nights are still a bind as the mouth and throat conspire to fuck each other up and leave me the victim grappling around for some comfort, daytimes are fine.

I had the syringe driver out this morning the last of the morphine and anti sickness, it has been more of an emotional crutch but boy bathtime and showertime will be so special.

Like my children who last night lying on my bed relaxed fro the 1st time in weeks with Will in the house how lucky I am, how lucky to have a great job, great future, great friends, great kids and a body which has fended off everything that has been thrown at it this summer. I want the tube gone but know I need to get everything right before I take the step of having it taken back out. It is a pain but also has been a life saver for me and Thursday this week will be D Day for the tube!

I wish I could sleep more during the night but realise 33 sessions of RT plus the neck operation have asked some pretty serious questions of that it will soon all fall into place as long as I relax, chill and smile :)

N X

Day 15 - Medical update

2005-09-02T09:28:00.000+01:00

Well unsprisingly I turned up at 1000 am for my post radiotherapy review only to find the person who was due to see me on holiday. No big deal but my dear friend had volunteered to take me and she had taken time off work so the clock was ticking.

Eventually Dr Sheriff saved the day just like those in all the Westerns I had been watching and saw me at the last minute. Well the bottomline is everything is going well, people say I am looking good, better each day and sounding better. It is not easy at the moment as I convinced I am fighting a chest infection not made easy by a nasal tube and a runny nose from that area.

I have been able to juice up melon juice now and eating ice cream and custard at the moment which is another good sign and my voice is coming back to its old self, even with a slight slur, but hey just like the old days. The tube I a bind but important for getting the feed and vitamins into me that the food cannot at the moment. The whole eating thing is very frightening but slowly eating soft food will get back into the swing and taking those 2500 calories a day that I need. The good news is I have been told I hope to have the tube out next week a milestone I cannot wait for :)

What is a co-parent

2005-09-01T09:06:00.000+01:00

Ok a co-parent is a parent who plays an active part in your children's welfare, upbringing and life without playing the partner role to the mother of your children.

In essence I have joint responsibility to my children and play a very active part in their well being without living in the same house as their mum. Whilst many fathers are active, my involvement is not just around set times but playing a full role in decision making for their future.

Hope this helps.

Day 14 after treatment

2005-09-01T08:56:00.000+01:00

I decided to be positive and change my counter away from the negative count up of days found having cancer to days after radiotherapy finished. It seems more logical now I am recovering and moving forward with my health.

Today is my 1st RT out patient appointment at the hospital I am not sure how intensive this will be but would of though just be a check up of things and how thing are getting on. I think it is too early to hear "cancer gone" but lets hope I hear words such as treatment went well and your doing very well, I need praise at the moment if only to keep me going. Side effects can last anything between 3 - 6 weeks after treatment so need to get use to feeling as I do for a few more weeks. Boy its hard but must keep smiling and attacking! Talk to you later after my appointment.

Nigel x

Day 93 - Emotional wreck

2005-08-31T09:36:00.000+01:00

The enforced stay of being at home is not good for me. Whilst I was able and now fit enough to drive into Exeter yesterday to buy a new addition to my blow up range! oh err Mrs! Matron pray explain, 9 foot of tender boat you fool a certain amount of time does get used in front the TV in particular when topping up with liquid food. Yesterday afternoon I had the choice of Khartoum, Tale of Two Cities and a programme about a bunch of USA makeover artists extremists knock down your house and rebuild it within 7 days.

I decided to watch all three through a process of channel hopping and timing commercial breaks. At the end of all three I found myself sobbing, sobbing for the family who have had their house rebuilt because they are real good eggs and help someone child with bone marrow donation, sobbing because Dirk Bogarde going to an innocent death and as for the last film who needed a cause? The whole thing brought the fact home that I am getting better and quite frankly the morphine reducing and allowing me my life back again. Yipee

I forgot to tell you that the only time I have "medical issues" is now waking up hour. I think half my problem is a chesty cough at the the mo judging by the rubbish I cough up in the morning. Although pain reduces when stable and not coughing, I am not sure certain things are healing, though not coughing now should be an achievement. Inside my throat its is still very sore, although taste has has come back. I am not sure when I will be able to find a nice bland solid, but might try baby food at the end of the week to give it a try as I'm fed up with nasal tubes and to be honest they will want it out soon judging by my last convesation!

Spring water goes done very well as does milk, so at least I will live but one of the funny things is I have lost the sense and ability to regulate what I drink, using a straw as I gulp its hard to stop and with taste coming back water is even more tastier. I would imagine anything fizzy would result in bubbles coming through your nose :)

Yes everyday does make me better, its a long recovery, too long for me but sitting it out has it strengths but a whole sackful of downs better dash for my daily dose of district nurse intervention.

Speak soon Nigel x

Day 92 - Recovering is not easy

2005-08-28T20:33:00.000+01:00

I was warned that recovery can be a bad as the real thing, as the treatment is still working(she meant killing things) 7-10 days after. The RT nurses know their stuff and my mouth and throat has given me problems all weekend.

I saw the children yesterday and had a great time. When the kids left I went straight to bed, although tired decided to carry on sleeping when I woke up about 9pm. It was clear that I had a tickley cough, I have these before and you can imagine the havoc it causes a cough, sore mouth, neck, tounge and throat the last thing you wanted to do was to try and chuck up all night. I did the chesty cough, the one where there is nothing to come up but just rips your insides out. The first session at 2200 the next at 0430. You could imagine how emotionally weak this had left me, any act of putting liquids and fludis into my body becoming hard and painful.

I see each day as a piece in the recover jigsaw, all is fundamental to the last piece of full recover but I know it will be a few weeks before I "lose the tube" as my swallowing will need less nights than last night than more I am off to dream off.

Night all: x

PS:New fish 14 , Pain 4 out of 10! unless I cough then 8!

Day 91 - What use is a life jacket

2005-08-25T20:14:00.000+01:00

My children are back from "Up North" and I have just been asked the question what use is a "life jacket 20k feet above sea level in a plane hurtling hundreds of MPH towards the ground as there is no sea between Exeter and Bradford" I said non what so ever so my son moved onto to his next question, what use are oxygen masks, ,,,blah blah.... you know the score.

Yes they are back and boy I have missed them big time, missed then not only in the 2 weeks they have been away but in the months I have been ill. I love them so dearly I have pacing around tonight just waiting for the plane to land down back in Devon and my children to be home.

I have been progressing well pain levels about 6/7s rather than 7/8s. First thing in the mornings have been tough with sore throat and mouth a wash with the tar like squirmy phlegm which makes me sound like a washed up 60's porno rock star who has one giggie too much the night before. Once the piankillers are in you loosen up and start the day with fending off a shed load of questions from the district Nurse.

One thing the NHS seriously needs to sort out is the consumption of garlic by its employees it seems the sweet district nurses are worse for shovelling in the stuff behind managers backs. With chemo you notice smell and food smells can make you vomit meters off, if fact the past 3/4 weeks virtually every doctor, nurse of member of catering staff with the exception of Yeo wards answer to Mrs Doyle "Maureen" reeks of the stuff.

There you are being injected by nurses saying mmm yes avoid this and that when it is their breath actually wanting to make you you puke, now not even the brave "Nigel" has thought of a way of tackling this one any suggestions!

Day 80 something - Home day 2

2005-08-24T12:17:00.000+01:00

Pain levels : tongue, throat and mouth 7-10, a faller from yesterday's 8-10 unless coughing ten back to 9-10.

As I inspect the ferry house after my ordeal and few weeks away I note very little has changed except words. On of the longest set of statements and words are all around treatment. Terms like "treatment over, finished and completed" are used. This is because there are not tangible you cannot yet actually derive a benefit from a treatment such as you can when you have a painful tooth removed.

I have always said cancer treatments "radiotherapy and Chemo" are oxymorons and they may you feel worse before you are expected to get better.

Its now 7 days since my last full dose of radiotherapy I was too zonked to hold a party, to sicky to scream hurrah! and planin sensible not to kiss dirty unhallowed hospital floor, after all I know what goes on in there. My last 10 days stuck in hospital showed how lucky I was, my moving around the ward to make allowances for fellow patients who were dying was obvious, in fact I was told! The pain in voices of those who had been told earlier that there was no cure and that all they could do was to delay to inevitable. I am not going into fill detail here as I was too unwell to document anything down, but I felt this was my personal space, alone with my thoughts and others away from me.

The pain continues see my scientific laser display earlier up the screen. It is all in my throat but not long before drinks and food start making their way back down that hill.

Anyway need to go back and study my charts, as the wind is up and there is no sail today x N

Home!

2005-08-23T01:55:00.000+01:00

battypatty says; Nigel is home now and being well looked after by his friend Orpah. He will have nurses coming in daily and the aim now is to build him back up. He is very tired and will spend a lot of time sleeping so if he does not update here for while that will be the reason. Thank you all for your messages of support and kind wishes. Now - Keep attacking, Nigel!!!!! xxx Pat.

Saturday 20th August

2005-08-20T22:31:00.000+01:00

Ron wrote.
I saw Nigel today. He had asked me yesterday, if the Staff agreed, to take him home for a visit today. After checking that it was ok we drove to his home in Starcross taking a diversion to avoid the holiday traffic via Powderham. Saw the Deer in the Castle parklands but Nigel was not too aware of them. I dropped him, made sure he was alright and then went off to do some shopping watched a bit of the rugby and picked him up again at 5. He is a lot better than yesterday, still having trouble with his throat, but able to speak a little, still nodding off at times though. A fighter!!
He told me he hopes to be leaving the hospital on Monday afternoon, and this time he will get backing from the local hospicare nurses a daily visit to make sure he is able to cope with the pain etc.
I have the utmost respect for the medical team at the RD&E, which has been superb at all times but I do feel that there has not been the same support available for Nigel when he has been at home. If there had been then I am sure he would not have got into the state he found himself in last week. That is not the fault of the local hospicare, they would have helped I am sure if asked.

a day of 2 halves

2005-08-20T00:17:00.000+01:00

battypatty says; had a text from Nigel in the morning to say he had never felt so ill and the pain was really bad. Went in to see him at lunch time and he looked so frail and fragile it was heart breaking. Holding his hand was like holding a child's hand it was so small and thin. BUT.........tea time we had another text from Nigel saying that the staff had said he was allowed to go home in the daytime and could we help? Ron has to go into Exeter to watch rugby trials so he agreed to pick him up, drop him at home and then fetch him on his way back ONLY if the staff are 100% behind him going home. If they are in any doubt then he stays in the hospital. I did have a chat with a doctor but not the one treating him. She said that they had decided to stop the last chemo session because of the bad reaction he had to the last one. It was now a question of just slowly building him up and then another case conference in about 6 weeks. Perhaps Nigel will add to the blog later, we shall see!!!! Pat.

message for "Big Ron" - his nephew Mark went in to see him yesterday - LOL.

just a quickie!

2005-08-18T15:12:00.000+01:00

battypatty says; We have not been in to see Nigel to-day but I just spoke to Kevin who says he is a lot brighter to-day than he has been for a while. We will be in there t0-morrow so will give more details then. Thank you for your e-mails & e-jokes, keep them coming! Pat.

mail for Nigel c/o - therobs1@ntlworld.com

the end of the line?

2005-08-17T14:25:00.000+01:00

battypatty says; I didn't get in to see Nigel as I had a bad night and I was just not up to it but Ron went in to TAKE HIM HIS PHONE ( hee hee ) and clean clothes etc. He had his last session of radio therapy to-day and there seems to be a feeling in the air that they may not now give him a last chemo session. He has accepted that he is ill and just needs to stay there and be "nursed", something which they are doing admirably. The NHS takes some knocking, and quite rightly sometimes, but Nigel can have no complaints about the way he has been treated. I know he has moaned because they have not jumped as fast at times as he would like but in a rational frame of mind he would agree with me. Ron says he is looking a lot better than a couple of days ago and is more alert. TY for your messages & jokes, he was very pleased with them. A belly laugh was not achieved but a smile is a wonderful thing to see. There is going to be a conflab to-morrow as to how they proceed and , of course, I will let you know. Pat.

my e-mail for messages to Nigel - therobs1@ntlworld.com

chemo postponed

2005-08-16T17:57:00.000+01:00

battypatty says; Nigel rung earlier and said that they have cancelled his last chemo session as his health is just not up to it. He has a very low red blood cell count and they think he has a chest infection. They are going to get him fighting fit once more and then give him the chemo. He wants us to go in to-morrow ( not allowed to-day! - lol) but we are not going to be allowed to stay long and anyone who is not 100% well - STAY AWAY! mY E-MAIL address if you want to mail Nigel is , again, therobs1@ntlworld.com. Please send messages as I know he would really appreciate them - even if they are only a page of rude jokes! After all, do any of Nigel's friends know clean ones? Speaking to his friend Kevin, the oncology nurse, and he says that Nigel has seen the error of his ways and promises to stay there until they , THE EXPERTS, feel he should go home. Fingers crossed he keeps to it. At the moment he is just too ill to move. Ron has got him a new battery charger so Nigel & his phone will be re-united to-morrow. Pat.

not feeling too good

2005-08-15T23:36:00.000+01:00

battypatty says; Nigel is not at all well at the moment. He is unable to speak much as his throat is so sore and we employed a kind of sign language and grunts. He is also receiving a high pain meds dosage and is not quite with us. We took in some clean clothes and picked up his dirty laundry ( he is still getting the women in his family to do his laundry! ), went and fetched a few things he wanted and left, He really was not up to visiting. Still, one bright light on the horizon - he now has a phone! It is just a bog standard thing, not like his all-singing, all-dancing thing but hey, beggars can't be choosers. It really broke me up to-day to see him like he is, we went up to get a coffee and I had a bit of a weep, wiped the tears away and went back smiling. So you see Nigel, I am not as hard as I like to make out. If anyone leaves a comment I copy them off and take them in to him and if anyone would like to send him an e-mail then send it to me at therobs1@ntlworld.com and I will make sure he gets it. I am sure he would love to hear from you. Pat.

Panic stations!!!!

2005-08-14T23:36:00.000+01:00

battypatty says ; For anyone who knows Nigel well they will know just what this means! He rang to say that his mobile phone battery had run out and his battery charger was not re-charging it. NIGEL HAS NO PHONE!!!!!!. I promised to take mine in for him to-morrow and he can swap the sim card but hey guys, just imagine - Nigel with out a phone .ROFLMAO. For those of you who do not know my brother that well I should explain that when he was born they did not cut the umbilical cord - they cut the phone wire. I once asked him what he would do if they banned mobile phones and he said he would have to start talking to people. So, if you have not heard from Nigel, this is why.

just drifting..............

2005-08-14T17:09:00.000+01:00

battypatty says; We rang the ward before going in to see Nigel as we were not sure he would be up to visitors and they said that he was on a pain control level that was allowing him to just drift in and out of sleep and they would prefer he stay that way. Apart from that - as well as can be expected. We will check with them again to-morrow and let you know. At least he is comfortable now.

giving in gracefully

2005-08-13T11:52:00.002+01:00

The picture are the radiation beams.

battypatty says; Yesterday, when Nigel went on the ward for his check after RT, he was told that in their opinion he should stay in but Nigel, being Nigel, refused. He argued that they were having him on Monday for as long as it took and until then he would rather be in his own home. A sentiment I am sure we can all relate to. Not having heard from him at all, by phone or pc, we texted him this morning and said he must let us know he was ok. He was not and after ringing the hospital Nigel is now on his way to the ward where he will stay until they decide his treatment is finished. He has a large ulcer on the side of his mouth, constant reflux action and his pain control is not good. Once settled, hopefully he can just gather his strength for the final push next week. I know your thoughts and prayers are with him and I will keep you updated. Pat.

Day 81/82 - Keeping up appearances, again!

2005-08-12T08:38:00.000+01:00

For those of us who have children the keeping up of ones self appearance can be hard, kerb stops to quell the near rebellion sounding "I need a wee" or the "daddy I am going to be sick "when now" but when you asked the question you knew your darling siblings cheeks were more to do with the vomit they have stored up rather that wind, as they let rip over their grandparents new leather sofa that grandfather was still polishing had just taken the wrappers off. Yesterday was a day very similar to that in my own life.

The children were safely dispatched via Flybe to Leeds/Bradford Airport from Exeter in a record 45 minutes against the usual 45 days by "Virgin on the ridiculous rail" I understand that William was the 1st to keep up appearances but shouting on landing "looks like we are all going to crash at his highest volume level" Good boy! as his sister went round selling look cute in pink death policies only 1 installment necessary.

I took the bus from their village, to mine, a 3 mile single trip in which stagecoach operates every 15 minutes. I managed to be sick on the bus, thank heavens for Tescos carrier bags and immediately stepping off the bus. Now the insertion of a large tube showing people that thing are not 100% in the food department is a give away however there is still personal embarrassment from an event happening in the 1st time. The sickness is foul, not only do we get the "feed" bag stuff reappear but the pain from my swollen neck and throat just adds to the fire.

I had the chance to stop my last chemo session next week and stop my RT to recover. But with more three more RT sessions after today and one more chemo next week I am looking forward to kissing the arse of cancer good bye as I drive off into the sunset on Wednesday.

I could have given up and said no more lets see how we got on, or come back in 2 weeks but I had set a plan in my life to complete the job on time no matter how painful, and boy next Wednesday at about 1230 when I walk out the RT room I hope it will be over x

I am keeping attacking! N

Day 80 - A touch of the spiritual unexpected

2005-08-10T00:08:00.000+01:00

It was 2330 hours when I was able to slip down into my huge pillows and new bed linen on my 2nd night at home from hospital. The gentle purr of the food pump by my beside and my hand wandered to the huge emptiness of my king size bed with the anticipation that I will not forever have to endure the delicate moments of falling asleep and waking up alone in my bed.

As the Church clock struck the 1/4 to midnight chime I felt my head be raised and a warm glow in a halo effect come around my head and neck area. When I lifted my head I opened my eyes to see what was happening, it was like I was putting my face into a warm bowel of water and the pain, discomfort and difgurement had all gone from my tired body. It was relief raising my head and feeling a warm "ready brek" glow.

I knew something was not all that it seemed and within a minute the feeling and sensation had gone. I turned over only to have a sensation of falling 5 meters onto a hard surface landing in a heap and yes it did hurt. I had not gone anywhere but still in the bed in the position I had been in all along.

My mobile phone followed me in a fall as I heard it thud against the floor. Before you ask it did happen just a few minutes ago and I was determined to capture a written record before that was consigned to my mind.

It was not the medicine as none I take give hallucinations, perhaps its was something more powerful, any ideas?

N

Day 79 - Getting back to reality

2005-08-09T15:11:00.000+01:00

I arrived back late last night. My hand was forced to leave hospital yesterday when I went for a mid afternoon snooze only to see the man with the “telescopic hair spray” sitting in bed opposite me. You can imagine my fright, was he going to reach for his soap bag, or was he in fact the grim reaper and a spray of his magic hair spray whips you away down under!

The feeding process went well last night apart from the frightening prospect of the tubes from my feeding machine and syringe driver trapped around my neck. Something I need to be careful off, after all come all this way just to strangle myself in the process!

My dreams are very vivid at the moment. There were two different dreams yesterday, which without the chance of having a pen around I have struggled to remember, however they all include an element of “letting off steam” and using my cancer as a positive to get things done. Both dreams were about expressing myself and how I truly feel about having cancer. I remember both dreams had me in public perspective and both involved me speaking or campaigning for causes I can recall the people that were there and those around me were those I felt comfortable with.

With the cancer treatment coming to an end it is clear that my mind is body and acutely aware that the end is nigh. There will be after treatment pain. But then it will be all about recovery. I am not quite sure what to expect after this massive medical, physical and emotional support the mechanism will withdraw and lead my life back to slow normality whatever that will be.

Well I have been up since 9am, all fed for the day, just waiting for my lift to the Hospital and things are good, just 7 more sessions to go!

A day of rest

2005-08-07T16:50:00.000+01:00

battypatty says; Went in to see Nigel in hospital to-day but we did not stay long as he was very tired and not really in the mood for entertaining. So, it was a brief chat, inspect all his equipment, read his cards and leave. As I say he is feeling very tired but apart from that a lot better in himself. He is nicely cocooned in there, all food & meds are going in his tube and he is a lot more comfortable. He is starting to crank up the political machine again - lol. He may come out to-morrow but is taking each day as it comes.

Day 76 - Keeping up appearances, Thursday 4th.

2005-08-05T18:21:00.000+01:00

Nigel has written this and I shall endeavour to read it! ( at least we know the spelling will be better - hee hee );

One of the first things that go when you are in hospital is keeping up one's personal appearance. This is mainly because you feel that you do not wish to compete with the nursing staff who hold the key to the enema cupboard but after a leg amputation it is always difficult to focus your mind on putting on your best lippie and setting your hair in rollers. However, keeping up appearances is so important in this modern world, after all what's a leg between friends, well depending where you live in the world it could be a roast dinner.
One thing about hospital that is much like prison is that you cannot chose your cell mates.If we are all honest we would rather be stuck in a cell with clingy "Craig" from Big Brother rather than a rampant Mike Tyson lookalike who likes to be called Daddy. I have three bedroom sharing colleagues all with various types of cancer and all at different stages. None have symptons that would scare children but certainly 2 of them warrant the attentions of this column. I have not changed the names to protect the guilty so will deal with these 2 characters in turn. Opposite me is Mr. Smith, mid to late 70's - spotless slippers(?) , silk dressing gown and the looks of Roger Moore. The one thing that did strike me was he had this amazing head of perfectly coiffured jet black hair and shiny white teeth. In my observations of him over the past few days he is the sort of bloke my mother warned me about. Rather than Roger Moore he reminds me of the childcatcher in Chitty Chitty Bang Bang. He has no ? belongings except his soap bag. This morning I managed to get a tablet stuck in my throat. The effect of this being that my mouth foamed and I looked like a rabid dog. The giveaway was the cages (?) and the nursing staff dressed up like 5th century Chinese warriors and prodding me with an electric cattle prod. ( Okay Nigel, just what drugs are you on? lol ) Whilst I was frothing at the mouth I saw the childcatcher fetch from his only possesssion, his soapbag, a huge aerosol can which because of its size I can only imagine he obtained from an Australian crop spraying Uncle. It was huge, in fact I am sure it was telescopic, the aerosol just kept on coming! It was industrial, huge and at one stage I was convinced it was inflatable! For the next 2 minutes terror reigned on the ward - Childcatcher was spraying his hair.I could see leaves being ripped off the bush outside, I could hear the gas attack sirens going off at Devonport Dockyard and his fellow room mates were flattened to the boards by this toxic hairspray. "Roger" continued to spray his raven mane whilst the rest of us were looking for the escape hatch and calls were made to Scotland Yard about chemical weapons attack. I am convinced that George Bush would have invaded! Then, with the speed of a minicab running late, he managed to return it to the small soap bag!!! I maintained a watch on him for other self grooming products (?) from the soap bag but alas, my entertainment for the day was focused on cricket.
Thursday was a good day in terms of health. I must admit Monday, Tuesday & Wednesday this week were energy sapping, emotionally draining days. I was at my weakest and was finally glad I said "Please help me".
Swallowing is now virtually impossible as everything including liquid food, medicine and water now goes through the nasal tube. The nasal tube will be replaced next week by a PTB (?) tube. It is a tube which is inserted directly into your stomach. Whilst the nasal tube is not painful whilst it is in ( inserting it was a real screamer!) it is very cumbersome and unwieldy to use but it is effective and has for the past 3 days kept me alive. The PTB is unobtrusive and non-visual and it will be in for the one week remaing of treatment plus the few weeks after whilst my throat and mouth recover. When I had my nasal tube fitted at the second go I was scoped to check on the state of my throat. The exact words used were " You poor thing, I can see why you are in so much pain". My throat is in shreds, ripped apart because of the radiotherapy and ripped further apart by the repeated sickness.
I have none of the anxiousness(?) I had before about Yeo Ward. They had made me better this week and for that I am grateful however much the inconvenience of staying in hospital.

P.S. - Lizzie has passed her MOT and for £200 - what a bargain!

just a brief line

2005-08-04T18:34:00.001+01:00

battypatty says; We have not been in to see Nigel to-day but he says he is ok and he is getting "food" in him and you will all be pleased to know "bodily functions" have been restored! :-). Paul ( his nephew ) went in to see him to-day but he was asleep and he said he just did not have the heart to give his tubes a yank because he looked so peaceful. Fingers crossed for going home to-morrow. He said, in a text, that he has it all written down so wait for the blow by blow account!!!!!!! Pat.

don't speak too soon!!!!

2005-08-03T18:23:00.000+01:00

battypatty says; they have succeeded in putting the nasal feeding tube in to-day and he has started having his first "meal" in quite a few days. The bag takes 24hrs to go through and then they are going to show him how to do the next one so he should be going home on Friday. His friend Kevin, the oncology nurse, is going home with him and staying for the weekend so he will be well looked after. I didn't manage to get in there to-day but Ron went in as Nigel wanted more things fetching from home. He says that he is looking about 500% better ( men do love to exaggerate!) and there is a spark back in his eyes that had gone missing in the last few days. Despite this, he is , of course, not feeling at all well and is raising no fuss about how soon he can go home. Pat.

the best laid plans of mice and men etc........

2005-08-02T22:13:00.000+01:00

battypatty says; Went in to see Nigel this afternoon but he was not really up to visitors so we bought him a couple of papers and left. He was very lethargic and I believe he is on analgesia. He had not, at that point, had the nasal tube fitted but they were getting ready to do it. I had a text a couple of hours later to say they had failed in their efforts to put it in and the whole procedure was a nightmare. I am guessing here but I would imagine it has got to the point where his throat is too swollen to allow access for the tube and I fear this may now mean he will have to have a stomach tube fitted. I know this , more than anything, is the thing he really fought against but he must get nourishment in him. I just wanted to give him a big hug and take his pain to myself. Will update as and when, Pat.

Sanity has prevailed!

2005-08-01T17:36:00.000+01:00

battypatty says; Nigel has been admitted to Yeo Ward to have a nasal tube fitted so hopefully he will now start getting the sustenance he so badly needs. He is very de-hydrated and expects to remain in there for about 3 days. I hope to get in to see him to-morrow and will update you. Thank you all for caring, xxxxxx Pat.