18 Years on

So today marks 18 years since my cancer diagnosis, and I always mark this as the day I am "cancer free."

I have in the last 18 years lived for now, facing the sun shadows can only fall behind you.  I have had a busy year, walking the Inca and Queen Charlotte Trails, completing a Post Graduate Certificate in Higher Education and trying to live each day as my last. 

I try and forget the anniversaries of my cancer days.  I am reminded of them every day as the lasting side effects of radiotherapy and head and neck surgery badger me everyday, and will do until the day I die.  However this year I promised myself no tears and gentle slide into June until I heard the news that Councillor Kevin Mitchell is now the Lord Mayor of Exeter.   I read this and wept. 

For those who have read my blog will be aware that during my cancer treatment I own a depth of gratitude  to four people, my late sister Pat and her husband Ron, my dear friend Orpah and a nurse who at the time was working in Yeo Ward, one Kevin Mitchell.  

I was a regular stayer on Yeo ward in 2005 at the Royal Devon & Exeter Hospital, for those who do not the hospital well, Yeo ward is the oncology ward.  Kevin was one of many nurses who did amazing things in a ward that was blessed with serenity when discharging their care, alas some of it palliative care.  I told many stories of my time in that ward, but one story of Kevin's humanity and care is worth repeating.

Radiotherapy meant that I could not eat, drink or take medicine, I was rapidly losing weight and the chemotherapy meant that I could not have a peg tube.  The only answer was to have a gastric nasal tube fitted, which meant a long tube inserted through my nose into my stomach.  I was scared, but weary as I had not eaten for days, Kevin was on night shift and we had become good friends on my many stays on the ward.  The tube insertion was planned on a different ward at 0900, there was no nurse or HCA available to go with me, so Kevin gave up his own time and stayed on, unpaid to go with me.  The process was painful, his jokes, reassurance and even at one point I had to grab his hand as the tube was inserted stayed with me as a selfless act of nursing that went beyond the realms of what was expected. 

Kevin and his Yeo colleagues was the reason I signed and worked as an HCA during covid. 

His charity FORCE was also were crucial in my acceptance and support during a difficult time. Exeter should be proud to have such an amazing man as Lord Mayor.

https://news.exeter.gov.uk/new-lord-mayor-of-exeter-cllr-kevin-mitchell-chooses-force-cancer-charity/

#keepattacking 

D-Day - 17 years cancer free

Ask anyone who has had or has cancer will know what the importance of dates are then you will get a clear understanding of how a simple anniversary can provide a mental trauma.  Today marks 17 years of my diagnosis of cancer and as there were so many dates in 2005 I use this one as my D-Day, diagnosis day.  You live through the experiences of 17 years ago today as it were yesterday.  

The year I decided to deflect my thoughts of the past, after all they are not a life sentence and I will next week embark on a hike up the Inca Trail with a visit to Machu Picchu, the deflection strategy has worked a treat. 

This years clinical update brings to you the final demise of my teeth on my lower left jaw through Osteoradionecrosis.  As I written before with many cancers the after effects of the treatment bring lingering side effects and now with the lower left jaw clear of teeth I hope things will settle down in terms of head and jaw pain.  My left shoulder and neck, are holding up as I changed my exercise regime to do less weight bearing exercises which were building muscle to compensate for the lack of muscle in my left neck.  My hearing in my left side has gone for good following the same radiotherapy that killed my jaw, but hey "we go again" for another year.

On a personal level it was a good year, my son finally graduated, my daughter went to University to become a student nurse and I acquired a new dog Beau or she acquired me. 

#Keepattacking everyone let us hope I will report back next year! 

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! 

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.  

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