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 !

Memories

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

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

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.

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!