11 years ago today

Hello readers it has been a while but 11 years ago today my life changed for ever.  I had a radical neck dissection which whilst left me with half a neck, no feeling on the left hand side of my face and what is left of my neck, no muscles, daily pain but more importantly I am alive and well.

I re-read this today and thought wow 11 years later I am still here and glad to be here.

http://nigelgooding.blogspot.co.uk/2005/05/written-by-nigel-typed-by-his-pa-pat.html

11 years on I still get worried about my facial features, people find it really difficult to see the joins but one or two are able to pick them but apart from that I live and adjust because the treatment despite being brutal saved my life.

I just want to give those out there reading my blog because they are not well and hopefully wanting to understand what the journey you may be on or about to start on that there is light at the end of the tunnel and there is life after treatment.  11 years so far so remember keep attacking.

Nige x

10 years tomorrow - keep attacking - FORZA FEZ

I am sitting at home in my cottage after running and playing Touch Rugby this evening I looked at the date and remembered tomorrow is 10 years to the day I was told I had cancer. It still catches up with you still sneaks up behind you and reminds you.

Tomorrow I will be getting up at 0500 and catching a train to work, this rugby season I have refereed 68 rugby matches and led a fairly active life despite the fact I only have half a neck.  There is so much life after cancer.

I re-read my blog at times like these and I still get emails of people who read the blog and find it informative and explains their treatment and journey ahead.  It helps them understand what a neck dissection is, what radiotherapy can do to you internally as well externally and I hope most of all it allows hope to those in treatment that there is a chance that you can live a fairly normal life.

Ten days ago I was proud to raise with the rugby family £700 plus pounds for FORCE,   In May 2005 I wrote about FORCE,  whilst re-reading the postings this evening I have even more respect for the work they do 10 years on.  I have posted some below and the Iraq war seems such a long time ago now, as I clearly make a comment alluding to it.

If you want to know what living post cancer is, well it is raising even more money for FORCE in 2 months time as the FEZ BAND Tag rugby feztival takes place.


My comments on the wonderful FORCE Centre 10 years ago.


Today is support day, I have contacted FORCE a cancer charity in Exeter who have just opened a fantastic charity support centre in the grounds of the RD&E hospital at a cost of �G900k raised by local charities, yes local charities. I must admit there is something obsence about a country that spends �G3 billion pounds removing a ruler of a country under a false and illegal premise, but forces charities to raise funds for health support services that should of been provided out of the �G3 billion pounds. Sorry being political but the point I make is a no brainer when you consider this week a 9 year old died in Great Ormond Street Hospital because there were no funds available!

I am off to the FORCE relaxation therapy session tomorrow, 12-1 which I am looking forward to, and on hand there are counsellors and complimentary therapies which alas there is a waiting list but at least I am on the bus and with a ticket.

It is day 5, a short post this morning because I have lots a nice chilled things to do, including my relaxation class this morning at the FORCE centre. I am looking forward to my visit there as I will be in a place that understands me and my illness and I suppose a feeling of safety,

Well today was relaxation class and tonight an aromotherapy massage, I love the smell, the pampering and of course the feeling of wow afterwards just right for a warm summers evening. The sea breeze is very welcome this time of year something which I never mention.

The one thought of today was at the FORCE centre, an old boy would say late 70s struggled in on sticks flopped down in the big brother chair that I love. The old brave boy looked at me and said "I have one of these coming from Hospice care and you have to pay for delivery/collection on delivery, for obvious reasons" There was a stunned silence, what can you say to that when they deliver the chair they collect the rent now because a dead man cannot pay a bill!

I would most proberly say that has been the most moving experience I have ever had in my life, that brave guy knowing he was dying, knowing he was paying for the collection of his chair as he will not be around to settle the invoice. It brings it home to you that we do not have an infinite amount of time on this earth and some of us more finite than others.

Tomorrow is a massive day in my little World, Emma and more aromotherapy at the FORCE centre, followed by my pre ward visit for Chemo to Yeo ward, followed by the setting and positioning with that horrid mask on which sees me strapped in so they can position and mark me when they fire the radiotherapy bullets next week. I think tomorrow will be a defining day in my life in how I deal with the next 7 weeks, watch this space tomorrow.

Keep attacking

10 years today - I found a lump

10 years ago about this time I was on the train to Cheltenham Festival to meet John Dolan and Hilary Roberts.  I took my seat on the train, put my left arm on the window side and propped my neck up with my left arm and then the next 10 years was set.  My left hand resting on my neck I felt the lump that would change my life.

That lump crafted 8 months of brutal treatment and 9 years of side effects which leaves me less abled on my left side of my neck and partly deaf, but it does not stop me living life.

Cancer has not defined me in the last 10 years, but has given me the opportunity to live my life for me and not for others.  I have refereed 62 rugby matches this season to date, play Touch Rugby, and fitter now than anytime I have been in the last 20 years.

I wrote this blog when I was first diagnosed as I could not speak and felt it important to let others know how the treatment of mouth cancer takes it course.

This blog has helped many coming to terms with head and neck cancer and understand the challenges ahead.

I hope now 10 years on that you realise that Cancer is not a life sentence, but life itself is the sentence whereby we all have to face our own demise sometime in the future.

10 years on I live a healthy life, lots of exercise, support and sometimes a bit of challenges because of my lack of a proper neck and muscle structure, but head and cancer can be a challenge that you overcome and live a happy content life ten years after finding that dreaded lump.

So if you are reading this on the start of your cancer journey fear not it is part of the roller coaster of life.

Keep attacking.

9 years check up and all clear

My posting's are few and far between these days.  This is not because I feel the need to move on from my cancer experience but it now not a significant part of my life it once was 9 years ago this spring.  But it still comes back to haunt you when you least expect it.

Today my annual visit to the Royal Devon & Exeter hospital was a positive one.  Though I never get complacent and will never the lose the pre match nerves of attending the clinic.

I park in the same spot walk in the same entrance, take the same stairs and walk into the clinic that I know so well.  I cannot explain the feeling of seeing that sign "maxillofacial department" it is part fear, part safety, part memory.

The waiting room holds so many memories for me.  It has hardly changed and shares it seats with the orthodontics surgery which means many of the visitors are younger people waiting dental treatment.  That in itself was an unbinding memory of people in the prime of their life sharing their fear with us awaiting the consultation with a consultant on matters maxillofacial.

The waiting room to me holds memories of being told I had cancer, of awaiting with my staples in my neck, the weakness and pain of nasal feeding and latterly the feeling of unbridled relief of being told you are ok.

Today I saw Elaine, frequently mentioned in this blog as one of the nurses who instantly recognised me and passed the usual greeting on how I looked and 9 years, doesn't seem that long ago. She told me that  she had looked on the list and saw my name today.  Greetings exchanged the receptionist said "hello Nigel" 9 years on they still remember me.  That is what I mean about I feel safe. 9 years ago I gave them my trust and confidence, 9 years ago they cut away half my neck and started me on a journey of recovery which 1 in 2 people fail to make.  They had my life in my life in their hands and boy today and every visit I know it.  You banish it to the back on your mind until you return and walk in that door and boy it hits you like a train.  My first action normally is to well up.

It is like an extended family you treat them with respect and faith.  You lower your tone and want to hug them, it is a very special relationship, one I cannot explain but one that always reduces me to a compassionate tear.

The waiting is always interesting the coming and going of teenagers for dental work and those of us you can see visible facial damage caused through the ravages of cancer.  The consultation was through and swift as always - not Mr MacCellan but an equally competent colleague.  A script for some saliva replacement fluid and out the door see you in 12 months.

When you walk out that door with that comment ringing in your ears you life starts to operate again.  The consultation seems to melt away.  It normally takes me about 5 paces to start to cry and today was no different.  I walk the same path each time and as I walk out the department read the sign the for the out patients department I know my eyes will well up and and I am safe for the time being.

It does not stop there because as I walk back to the car I know the text messages to friends and family will bring more tears of relief.

The journey with cancer lasts a life time, mentally it affects you for years but this evening I want to let you know that after over 50 matches refereed in Rugby Union to prove I can still do the things I love  and 9 years later I am well if not mentally still anxious but then why not it saved my life before.

Keep attacking best wishes x

8 years today - A life changing day.

At 1030 on the 20th May 2005 I was told I had cancer.  I never expected to be told that it was cancer, that was never on my radar.  8 years on I am still here alive and well.  Medically I am ok.  The lack of a set of neck muscles on one side of my body can be an arse but then it is the least of my worries.  I do have to take the occasional pain killer when the neck seizes up and there is rarely a comfortable driving and seated position.  Office chairs and meetings are a physical pain as an incorrect seating position usually ends up with me having to stand to prevent spasms and the inevitable headaches.  Sports massage normally helps relieve the pressure so things are not all bad.

Another side effect of my treatment the dry mouth caused by a lack a siliva gland, so I take water with me everywhere I go and avoid very dry white wine and spicy food as it my roof of my mouth and tongue often remind how punishing the radiotherapy was.  My taste is about 80% of what it was but I can taste most things now without the fear the mercury taste lingering in my food.  I have to be careful with things like rice, crisps or anything with a sharp texture to it and quickly learnt the best way to move it from my throat is not to gulp water but dry bread. 

My partial deafness in my left ear is a pain in the arse but I still have a right one ! 

Mentally I am ok.  I still have a problem with crowds and a tad claustrophobic, but when strapped by your head to a bench for one session a day for two months has affected my sense of awareness in large public places.  I often get flashbacks, times, dates, places, people and smells.  My latest one is window washing liquid on my car brought back the smell of the hand gel in he Oncology ward.  It creeps up on you but nothing more than the summer of 2005.

I am as a fit as a 49 year old bloke can be and suspect I could be fitter, but when 15% of my muscle group are missing and my body has to make amends for this I do not do too badly as I enter my 4th full season as a rugby referee.  

In the last 8 years I have got married, divorced, returned to Devon, buried my mother, made the front of National newspapers, appeared on Radio, Refereed nearly 250 rugby matches, attended the Olympics, Driven a classic Mini to Rome, trained to be an Adult Education Teacher, raised about 6k for various charities, rebuilt one house and completely renovated my home here in Ide.   Life has not been dull and I do not think I have taken more than 5 days off work through illness (Not cancer related) in 8 years.

I have to say my goal of staying alive to see both my children get to 16 will hopefully be achieved within the next 4 years with Will 14 and 6'2 and Ellen 12 in July.  

I hope I can prove to those with mouth/head/neck cancer that life goes out after treatment, the treatment being so brutal that you are left with side effects, physical, mental and conditional but it should not stop you enjoying life and squeezing every drop out of life.  When writing this I can see the faces of the men and women that Summer who failed to come of Yeo (Oncology) Ward.  As I was often the only resident at weekends I was aware of fellow sufferers slipping away from us.  In one instance I vacated my room to allow someone to die in peace.  

Many improvements have been made in Cancer Research over the years and through charitable support one day Cancer will be beaten like many other illnesses have been, for example polio, smallpox and the advances in HIV treatment.  

Here is to the next 8 years, trebles all round.

Keep attacking.  

This could have been me - as a Rugga man I owe it!

Tony a Rugga man, a family man, a brave man with a family decided his life had come to and end through a stroke.  This we we saw film producer end his life throwing himself off a LA bridge.

Tony tried to get the courts to recognise his human right to die in peace and without pain.  High Court judges decided that "despite the overwhelming evidence and sympathy it was for parliament to decide not them" 

Instead Tony starved himself of food and medicine for 7 days and he died - I suspect a slow death whilst the GB I was proud of two weeks ago watched and whinced.

The GB parliament allowed him to die a slow and painful death - despite the fact he was of sound mind.

Having been in that position whereby a deliberating illness could take your life and you want to die society stands back and watches you die is frankly wrong.

Tony's death is a watershed and legacy is simple - those of sound mental state and sound judgement should be allowed the right to die in dignity - not the slow painful way he did - shame on you GB!!!!!

I think this could be my calling.

http://www.bbc.co.uk/news/uk-england-19341722

More feedback- from Graham May 2012

Friends you know I like to share feedback I get from readers with you so I am pleased to share this with you.  Other people's stories are so important - thank you Graham I am with you.

Hi Nigel, just dropping you a line to say that I came across your blog 
today whilst searching for 'radical neck dissection' on Google, and just 
wanted to say that I read it from start to finish as so much of it seems 
to parallel the journey I've found myself on over the last (almost) year 
- in fact it seems your journey was finishing with your final 'all 
clear' in July of last year about the same time mine was beginning, when 
I received my diagnosis of what a persistent little 'infected' ulcer 
next to my wisdom tooth really was late last June....

Its been a nightmare journey since, first I was told that it would be a 
fairly straightforward operation to remove the cancer, then I was told 
it appeared to have metastatised to my lungs and it was basically 'game 
over' for me. Then I had a PET CT Scan which revealed that it HADN'T 
spread after all and the op would go ahead, and a date was set. In the 
meantime the tumour spread rapidly, and a week before the op was 
scheduled I was told that it had spread too far, and that I was now 
inoperable. Once again it was 'game over' for me, and the best they 
could do was offer some chemotherapy to slow it down. I was admitted 
into hospital in late August for 5 solid days of chemo which knocked me 
for 6, and ended up being on the ward for nearly 3 weeks due to side 
effects, with only a 6 day break before going back in for the 2nd part 
of the cycle, another solid 5 days of chemo. however, the debilitation 
it caused was obviously a good thing as it radically shrank the tumour 
(at one point I remember literally spitting out lumps of dead cancer 
cells in the hospital bathroom), and led to me being 'reclassified' as 
once again being a candidate for surgery - my consultant said it was the 
best response he'd ever seen to chemo, and the first time he'd known of 
somebody being reclassified in this way.

Surgery finally took place on October 12th 2011 at Broomfield Hospital 
in Chelmsford, where they removed half my lower jaw which they replaced 
with a bone from my leg, although they had to operate twice as the first 
graft didn't take so they had to take some tissue from my chest. When I 
came round I got the good news from my surgeon that they had 
successfully removed the tumour with a good margin, and that my lymph 
glands, which were previously believed to also be cancerous, were in 
fact completely clear. A month later I was home recovering, looking like 
the elephant man, but encouraged by the district nurses who came daily 
to change my dressings who said they couldn't belive the speed at which 
I was healing.

Follow up radiotherapy ("precautionary only, to catch any cells that 
might have slipped past the surgery" I was told) began in December for 6 
weeks, which made Xmas a pretty miserable experience, but was nowhere 
near as bad as I'd been led to expect by my consultant. Again nurses and 
consultant were very pleased with my recovery.

I go back into hospital this Tuesday (3 months earlier than expected!) 
for corrective surgery to my face and mouth, debulking the grafted 
'flap' which is currently stopping me eating and speaking properly. I 
know it won't be anywhere near as bad as the 'big' surgery but still 
very anxious about it as I'll most likely be on the ward for a week, and 
be back on PEG feed (which I hate!) for a couple of weeks or so 
afterwards, plus irrationally convinced that they'll find 'something 
else' whilst I'm under surgery, hence my googling this afternoon...

Although my consultant is very optimistic and tells me "you had a lucky 
escape!" I still have a month before my first post-radiotherapy scan, so 
have alot of anxiety about that as well...

Anyway, thats enough of an off-load onto you, not what I intended when I 
started typing, just wanted to say thanks for sharing your experiences, 
they've given me alot of hope and encouragement, my wife sitting next to 
me says this is the sort of positive thing I should be reading instead 
of keep dwelling on worse case scenarios...

Plenty more I could share about feelings, the 'why me?' questions, the 
utter lows of being twice told nothing could be done then the highs my 
body defied their expectations, the utter debiliation of the treatments, 
the hours of boredom sitting at home watching day time telly when 
feeling too unmotivated to do anything more creative (all being well I 
should be back at work at the end of May/start of June however...), but 
thats probably enough for now....

Things are just fine.

"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 :)

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

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!

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?

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

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

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

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

Yesterday I ran the 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

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

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

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

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

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 !