Using my Disability to create a positive narrative

 

As someone with a disability or two, I am able to lead a full and fulfilling life.  My disability does not define me, own me, hinder me or scare me.  It presents me with challenges and I problem-solve daily to work around them; disabled people are awesome problem solvers as we have to do this every day.  I do not want to be treated any different, I do not ask for special favours or treatment, all I ask you is that you respect the need to work a little bit differently with me to achieve the same outcome that you would with a person without a disability. 
 
As Chair of the Disability Network in a large Acute Hospital, working alongside Minority Ethnic Network and LGBTQ plus colleagues I have reflected on the events of the last week.  If you asked all of us what the aims of our members are top of the list would be “equality”.  In the eyes of this disabled man equality is not an evangelical crusade against everything that is available to people who are without a disability but all I ask is recognition that I am a fully functional human being who can add value to those around me.  
 

Our task is simple, to start the long journey that changes the culture in a workplace that will understand our challenges.  I grew up with the standard teenage insult was to call fellow schoolboys “Spastic” or “Joey Deacon” the latter a reference to the author and TV personality of the same name who had cerebral palsy.  Whilst this was seen as harmless “banter” by teenage boys the effect on people with a disability hearing these words are devasting and cause of angst.  I am glad to see that the use of these phrases has all but disappeared in wider society.  

 
As we have seen in the past few days the culture that surrounds us has a long way to go to meet my aim of equality.  Social media comments from English male cricketers about women and the LGBTQ plus community, booing footballers taking a stand against racism have hit the headlines.  The comments that “oh things are so politically correct these days” in my experience are forwarded by white middle-aged men, though not exclusively, who have never had to run away from people wanting to harm you physically and mentally because you are gay, black or disabled.  In simple terms they are bullies.  These are the minority in UK society, isolated in the enclaves of their own insecurity.  Their views will not be changed by us as a community being evangelical about our wishes for equality and recognition, they may be changed if their beliefs become isolated and ignored.   We as a group need to welcome all.  Evangelical and over-zealous behaviour from our disabled network will only see us become isolated as those we seek to influence and address their cultural attitudes feel threatened by an over-zealous approach to our aims and approach.  This would counter our objectives and undermine our principles that everyone is equal, disabled or not. 
 
Thirty years ago it was ok to go to the pub, drink five pints and drive, now society frowns upon such behaviour.  Society is already ethically and morally policing the Misogyny, Homophobia, Racism, Disability discrimination that exists.  As campaigners we would be naïve to think that these views will disappear, however as younger generations replace the views of bigots, racists and homo and transphobes equality, recognition can be achieved.  People have held these negative views for years to expect them overnight to change these entrenched views because they do not agree with ours is doomed to fail.  All we can do is offer an alternative belief narrative that we are open to discuss our concerns rather than creating our own island whereby we become captives of our own fear.  
 
One last thought for those who will throw back at our campaign I am entitled to free speech, yes you are, you are entitled to your thoughts and no one is taking those away that right.  However, your right does not extend to hurting others.   We all came to this earth equally, and we will leave it as equals, we were not placed on this earth to suffer at the hands or actions of others.  We can play our part let us work with others so they can play theirs. 
 

 

16 years Cancer free - This year is different.

 

Devon - Home 

 

Each year on the 19th of May I consider myself fortunate to have been another year on from Cancer.  It was 16 years ago today that my life changed with my cancer diagnosis that set in train 5 months of treatment and a lifetime challenge of physical and an unseen disability. 

As readers of the blog are aware there were life-changing side effects to my cancer treatment.   My hearing loss and restricted use of my left arm, neck and shoulder still make life a little more challenging than before but great for problem-solving.  

This year a new side effect came onto the scene in the form of osteoradionecrosis.  Osteoradionecrosis is a rare but late effect of radiotherapy. Radiotherapy caused changes to the jawbone, it zaps healthy blood cells and kills them this led to tissue supporting those teeth in the area zapped dying and as a result, teeth in essence falling out.  This year I had 2 extractions on my left side.  This year eating has become a challenge as you default mainly to the opposite side of your jaw to chew and eat.  It was going to happen eventually but another side effect of radiotherapy. 

The approach of my treatment milestones was often tinged with anxiety, but not this year.  My return to nursing has made me reflect on what is important in life and also refocussed my mind on being grateful for still be alive 16 years later.  The passing of my sister from Covid, my main supporter when going through cancer has meant that my focus has been on the living, the future and not looking back. 

#Keepattacking

Covid, Cancer, it makes no difference when it is your Sister.

Pat with my children who are now 19 & 22

My dear sister Patricia (Pat) passed away in the early hours of this morning (29.12.2020) unable to ward off the challenge of a chest infection and  COVID19.  Pat passed away in the Royal Devon & Exeter Hospital and was in the safe and professional hands of the staff of Culm Ward.  (Pat was able to use social media up until her time in Culm, warning people of the risks of Covid until she could no longer)

Pat was admitted on Christmas Eve. I was working in the Emergency Department when Pat was admitted by ambulance to the department.  I knew that name on the screen, burst into tears, the nurse in charge leading me by the hand to get into full PPE so that I could share her final journey. I got to hold her hand, talk to her and support her whilst in ED before she made her final journey to intensive care and then to Culm.  The whole experience very surreal knowing from my experience of Covid patients that have her acute breathing difficulties, her co-morbidities and her age (18 years older than me) meant that it would be unlikely she would see or speak to me again.  

Pat will be known to many of you through this blog as my sister who supported me through my own cancer journey in 2005 and co-wrote many of these articles.  Pat was not everyone's cup of tea, not mine sometimes, but she had a kind heart, this blog and her charity work through Exeter & Exmouth Carnivals testament to her helping of others. 

The transmission of the virus into Pat's shielding home was brought in by an unsuspecting "bubble" family member, who subsequently tested positive.  Whilst some may scoff at Matt Hancock's statement "don't kill your granny" ...alas in Pat's case it was true.   Her last words to me were "Nigel, I have been so safe, so careful" a reference to her and her husband's shielding.  

Pat is survived by her husband Ron, Son Mark, Grand & Great Children.

I have seen how Covid19 affects many patients.  It has no mercy.  I will, I am sure to see many more in the months to come.  When it is your own flesh and blood right in front of you, hooked up to machines and a nurse and doctor in full PPE it brings home the reality that every person needs to know, it kills and has no mercy. 

 

Hello my name is Nigel!

As I wrote before I have returned to the #RD&E Hospital as a #Healthcare Assistant.   Last week I worked a full 12 hour night shift in the Emergency Department, where my feet did not touch the ground for 23000 steps then on Saturday I had a very surreal day on a ward that I have a lot of respect for.

As readers maybe aware my radical neck dissection took place in the RD&E, I spent my recovery in Otter Ward.

On Saturday I returned to the place and the very bed bays where I was told I had cancer and then a week later had my life changed.

The surreal nature of the ward staff asking "have you worked here before" and replying no, "but as a patient I know it like the back of my hand"


To be looking after patients in the bays I recovered in was surreal and an honour.  I was not sure how I would mentally deal with the event, but as we were very busy and had lots to do, time flew and I closed a mental challenge and booked my next shift on Otter when I got home.

Keep attacking

NHS, time to reflect, what have they ever done for us?

I left the Hospital last evening after a long shift.  I was greeted by this beautiful rainbow in the car park which made a perfect picture capture.

For 8 hours I was on my feet, an unusual experience for someone who at 56 considered himself very fit.  I went home and like so many of the patients I cared for that day and all I wanted to do is crawl into bed.  I was lucky I was only on shift for 8 hours, many of my colleagues were there for 12.  You are always on shift, always aware to patients needs and support, always busy.

You have to be in front line nursing to understand how physically and mentally tough it actually is. I left the hospital last night mentally rewarded that I had supported our patients, but physically and mentally exhausted.  The effects lingering today.   I am not going to bang on about nurses pay, but frankly many of you would be appalled by how little nursing staff are actually paid!

Sunday marks the 72nd birthday of the #NHS.  This year the power of our National Health Service in coping under tremendous pressure has been evident. In 72 years I have reflected what the NHS has done for me.

• It brought my children into this life, safely and securely, coincidently in the same room, in the same hospital as me and will support them in their lives.
• It cared for my grandparents, parents and supported them at the end of lives with dignity and respect.
• They gave me a new lease of life in 2005 in my cancer treatment and support. 
• They watch over my family day in day out, there 24/7, ready to serve and support physically and mentally. no need to take my cheque book or credit card. 
• It has provided opportunities to pay and employ me and my family on numerous times. 

So feel free to clap on Sunday, use my picture on social media, whatever you do just be thankful we no longer have to "pay for the Doctor" 

#Keepattacking

15 years to the day I return to the Hospital, this time as an employee.

15 years ago today marks the day that changed my life. My radical neck dissection started at the RD&E Hospital started my recovery from cancer. 
It was time to give something back and after one month I am glad I did. 
#Keepattacking 

15 years later I am giving something back.  I today started my new role as a part-time Health Care Assistant (I will do 1 or 2 days a week) at the very hospital in which my surgery was performed.....fate, coincidence or part of life's script who knows? but the treatment clearly worked.

#keepattacking

When being chased by an imaginary lion, do not stop to ask its name.

15 years ago today my life changed.  In some respect, it changed for the better, in some it did not.  The clear positives are that I am alive and recently returned from Australia, if not sooner than I would have liked, my objectives for my children to reach adulthood and no return of cancer has been achieved. 

The downsides are clearly mental trauma, that lingers with cancer or any serious illness treatment, the muscle and body damage that are side effects of surgery and the slow decay of your teeth caused by lack of salvia. 

The phalanx of "celebratory" messages are often unwelcome.  You write and talk because it is a release from mental and physical trauma.  You share not because you want to celebrate, but because you want to forget and move on.  I hate May.  The 19th and the 26th will be etched in my memory forever.  The day my life changed and no matter how good, no matter how positive surviving 15 years there is still guilt.  I remember Yeo ward as if it was yesterday, I remember friends I made, who the next day were surrounded by their loved ones saying goodbye. 

My good and dear friend Martin Lynn who after many treatments to suppress his cancer died recently.  I miss him.  To have someone so close and understanding the journey you have been on no longer in your life is painful, he understood my guilt, he sat listening and nodded, that was the only recognition I needed.

So in recognition of my 15 years, I will write to all those friends and people who played a significant part in my treatment and the last 15 years, a team of people to keep me alive.  Doctors, Nurses, Family, Children, Friends and Work colleagues.  Without them I would not be here.  

#keepattacking

The importance of goals in life.

When you have cancer you set yourself goals.

Short term, they relate to treatment "days left of treatment" or dates such as "start chemo" but post-cancer they take on a different meaning.  They are longer-term, examples are, go back to work, change lifestyle habit to help me not see a repeat, see my next birthday in or see my children turn 18.

In my case, it was 2 fold, in 2005 when my children were 6 and 4 I wanted to see them become adults at 18.  In the case of my son, that was 2 years ago and in the case of my daughter, that was this year.  I also set one other milestone, see them in their chosen career or University course.

Today is where my post-cancer goal-setting ends, post-cancer I have achieved mentally and physically what I set out to do back in the days of cancer treatment.

My daughter Ellen, today starts her nursing degree at Plymouth University.  Ellen is studying mental health nursing a challenging and rewarding degree which will lead to a caring career.  Tomorrow I fly to Tokyo to see my son, Will who is 3 years into a German and Japanese degree.

Having goals in life, business, personal or sport are important, without them you lose the focus, so never mind how small, important or big they are keeping them in focus,  Develop a lifestyle, work habits or attitude to deliver them.



In my case I changed my lifestyle, lost weight, give up drinking, developed a fitness regime and established my own business to take away the stresses of corporate life, surrounded myself with positive friends and family.

It does not mean it was easy, quick or perfect as regular readers will know that the pain of surgery follows me every day in my life, however it maintained a focus to be here when my children were growing up and my next goal is simple, to be around when I and they graduate, in 2021 and 2022.

#Keepattacking

Mental Health & Post Cancer - 14 years on.

14 years ago tomorrow I was told I have cancer of mouth & neck.  I struggle mentally each year, at the same time, over the next 2 weeks it will be a regression.  14 years ago I was told I would require two operations. One to remove cancer in my mouth. The other the removal of cancerous lymph glands. in my neck.  The latter operation resulting in the permanent removal of neck muscles, severing of nerves that would leave part of left arm inoperable for life, areas of my head and neck numbed forever and a head balancing on just balancing with only half a set of neck muscles.  This surgery combined with chemo and radiotherapy to my head should clear cancer.  If you have read this blog you will see it did. 

Whilst I am "cured" physically the mental scars continue.  Yes, I suffer daily pain, have a body that cannot operate in the same way it is formed because of a lack of muscles and movement and deaf on my left side as a result of radiotherapy.  My mouth needs extra care, my teeth are at risk of loss due to osteoradionecrosis.  Oh and a wonky smile! 


I do not moan about these challenges as I am alive.  Whilst physically I am in amazing shape and live with my challenges, mentally the next two weeks are like a living hell for me. 

I dread for the next 2 weeks.  I relive the journey from cancer discovery to radical neck dissection (a 7-day journey) and trapped in a quiet hospital ward (over the bank holiday) my life changed forever.  The weather becomes warmer, the smells of summer, the flowers and longer days I dread.  

I retreat in my private life, In my work I become very busy, I become more fit than I am.  My Fitbit tells me I am 40, when I am actually 55.  I cope, but sharing my aniexity helps despite there is nothing I want people to do but understand why I feel this way in the last 2 weeks in May every year. 

I am blessed I am here and alive, but in #MentalHealthAwareness week it is important to stress that whilst surgery and medical treatment are life savers the after effects of any life-changing treatment are often mental. 

Women, Men and Children have treatment daily.  We all deal with things differently.  I started this blog the day after finding out about cancer to express myself, tell you my emotions and stop the phone ringing. 

It is ok to say, I am anxious, but not scared about cancer, that is the last thing I worry about.  It is the memories, the tastes, the smells, the sounds, the anxiety of having to see the next two weeks out are a small price to pay for seeing my children reach adulthood and keep me here to see it.

So next time a friend, lover or workmate says they are anxious or under stress understand that life is not the movies but real and listen, support and protect.  That way we can all keep attacking! 

Rugby v Cancer, bollocks to the latter

Cancer treatment left me alive so no sour grapes, I lay in a hospital ward where people died.  With partial deafness and physically less able on my left side of my head, neck and shoulder I said bollocks to cancer. Yes Cancer fucked me up mentally, sometimes does now. 

It defines my passion for beating discrimination with a big stick in any form and I know what the value of life really means.

So at 54, 13 years off cancer you play 40 mins of full contact rugby against a military side for charity you must be bonkers as cancer fucks you up right? 

Nigel you have a life disability that should stop you doing this nonsense right ?

Nope plenty of problems, but never stops me or allows me to whinge, fitter now than I have ever been because I value life. Yes for the past week I hurt, bruised and sore but you know what I am alive, well and kicking and bring on year 14 cancer free. 

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. 

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 !

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.

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.

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