Monday, July 09, 2018

13 years on and giving back

So 13 years on and just checking in.  I am all good, the usual left shoulder and neck troubles as a result of the neck dissection but hey 13 years on still alive and attacking life as my picture in San Francisco Bay this summer shows. 

Hope you are all well keep attacking. 

Tuesday, May 09, 2017

Another milestone reached - Yoof leaves School

As someone who grew up with a father who lived with a long term condition I know how that affected me mentally and physically.  The very reason I left University was when my dad went to hospital to have a triple heart by pass.  My place was at home but not before leaving University and travelling to London to see my very ill father.

William G, or Gooding as he is known and not be confused Charriot who also shares the unfortunate nature of living in the same house as me, was 6 when I had cancer.   At 6 years old he was not aware of the full implications of a father rapidly losing weight, staples in his neck and being fed everything through his nose but he would have guessed something was not like other dads.  However we often forget that a parent with a serious illness will place an anxiety burden on a child.  I will always remember 4 year old Ellen staring with interest at the staples holding my neck together.  I have never asked does she remember it?  Children are sufferers as well whether it be as carers or watching their love ones suffer pain and agony the role models being flipped as we are supposedly the strong ones.   I have not asked but will when the time is right.

This time tomorrow WG leaves Torquay Boys Grammar School after finishing his exams.  12 years ago I vowed that my job was to get my children to 18 and through School.  Part 1 tomorrow is accomplished when my son is a proper adult without the security or encumbrance of a school uniform he is now a proper bloke.   I'd hope that I would live to this day and I have.  I have to say I have mixed emotions about the event more to do with the lifting of the security blanket that TBGS provides.  However we have to let the Colts become Stallions and them to wander free.

Life is about setting a goal and hoping that your health and good luck sees you through.  In two years time I hope I am around to wish Ellen Bonn Voyage to adulthood.   There is not a day goes by when I do not think about those who I watched slip away whilst in Yeo Ward and feel guilty that I was given this chance to live where their were not, but tomorrow I will feel lucky and remember those who are not so lucky to be around and share magic moments with their children.

Keep attacking !

Friday, March 17, 2017

12 years ago today - The cancer journey started

In this very hour, 12 years ago I lent against a railway carriage window and detected the mother of lumps in my neck.  It was about 5 centimetres long, 3 across and should not be there.  I was travelling to Cheltenham Festival to spend the day with Hils Roberts and John Dolan.  It was clear that something was not right and frankly the day whizzed by in oblivion, thanks to John Dolan badgering me all day in his Essex tones "You best get that seen too" the rest is is history.  I have actually never thanked him for that, so 12 years later thanks mate.   It is funny that just typing that brings tears to my eyes.  The mental pain of cancer lives with you for ever.

It is funny how approaching the anniversary of the start, treatment and painful events stick in your mind. Yes I still have the mental and physical scars of the treatment but I am still alive.

I had a crap day at the races.  However 12 years later I am healthy, no longer drinking (why would I when one of the causes of Mouth Cancer is alcohol) and I am in rude health.

This evening I am at Exmouth Rugby club at 53, 12 years out of cancer I shall be refereeing my 40th ish game of rugby this season.  It was funny my advisor at my last game said "You running is strange and your hand signals don't look straight...I replied "I am as straight as you are going to get with only half a neck"

I witnessed many around me not survive their treatment. I have in those 12 years seen many slip away because of cancer.  I was lucky if it were not for John Dolan badgering me to to to see the doctor I would be dead.  If if were not for my family Pat & Ron Roberts and the amazing Orpah Browning all of which looked after me and cared for me then perhaps I would not be here today.

As I step out on the field tonight,  12 years on, 35 years difference between me and the oldest player (it is u18s) I will remember those dark days, those who have slipped away and those who are starting their treatment and hoping you will be writing something similar in 12 years time.

Keep attacking and thanks JD, 12 years late.

Thursday, November 03, 2016

Cancer milestones - 1 down 1 to go

Today is my son's 18th birthday. William L Gooding was born at 0323 on the 3/11/1998.  In the dark days of 2005 I set myself the goal that I needed to live long enough with my cancer to see my children, Will, then 7 and Ellen then 4 reach adulthood in the UK that is 18.

Setting milestones during cancer are important, post treatment they are vital.  My lifestyle post cancer treatment has changed.  Changed to give me a fighting day to see milestone 1, milestone 2 seeing Ellen becoming an adult at 18 in 2 and half years time.

I wanted to live to see my son and daughter both get to 18.  I am 50% there.

This week has been mentally traumatic as I reached that milestone.  There is a natural guilt to say why me, what did I do to deserve to live 11 plus years after treatment when those around me died.  Then part of the "so what" kicks in and you thank your lucky stars that you have had 11 extra years to your life. My mind has been racing towards this this self imposed milestone, perhaps inappropriately from time to time.

However it is important to set goals and milestones and here is to the next one in 2.5 years time when my job is done.

Thursday, May 26, 2016

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.

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

Monday, May 18, 2015

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

Tuesday, March 17, 2015

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.

Monday, April 28, 2014

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

Monday, May 20, 2013

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.  

Wednesday, August 22, 2012

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.

Thursday, May 10, 2012

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....

Friday, July 29, 2011

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

Tuesday, November 30, 2010

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.....


Monday, July 05, 2010

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