Cancer never escapes your mind

Eighteen years ago, I closed a chapter on my experience with mouth cancer, a chapter I naively thought was sealed forever. But life, in its unpredictable rhythm, has brought me to the threshold of new medical investigations for the same illness that once consumed my world. This time, the journey is less about physical endurance and more about navigating the complex corridors of my mind that reflect and bring fear founded or unfounded of a repeat of the treatment that left me physically scared for life. 

Last week I noticed some untoward features of my already damaged mouth and throat and needed urgent intervention and investigation with the usual UK Cancer Pathway GP – Acute Hospital – Biopsy.  I saw the GP within 2 days of my new concerns within 4 days I saw the ENT Consultant who was positive but suggested we check her diagnosis with a biopsy.  This will be undertaken next week, just 13 days from my initial interaction with the NHS.  This is in stark contrast to 18 years ago.  I have written before in the blog about Gordon Brown's government introducing the two-week cancer pathway which for those of us who meet the threshold has become a lifesaver. 

It was surreal walking through the corridors of a hospital that two years ago today I work my last shift as an HCA in the Emergency Department.  A corridor that today was full of people but a corridor that at 4am looked very different that night two years ago.   I reflected that I knew every part of that hospital either as a patient or a former employee. 

The challenges of the mind that this period conjures can be summed up as traumatic.  Those of have been through this themselves or with loved ones will recognise those feelings that I have developed in the last few days.  

These include:

The Weight of Waiting

There's an inexplicable weight that comes with waiting for medical investigations, especially after years of being cancer-free. The sterile smell of the hospital, the hushed tones in the corridors, the sympathetic glances from the staff – they all resurrect a sense of unease, a reminder of a past I thought I had left behind.  I cried when I left the consultation room knowing that initial consultations were positive but next week my biopsy will be undertaken by the same consultant who saved my life 18 years ago.  This will be surreal for us both.

In these moments of waiting, my mind becomes a theatre of 'what ifs'. It's a space where dark thoughts play out their performances, uninvited yet insistent. The anxiety is less about the physical implications and more about the mental toll of revisiting a place of vulnerability.

Echoes of the Past

The echo of my previous experience with mouth cancer reverberates through these new investigations. It's not just the fear of the disease itself, but the apprehension of the unknown. The past becomes a mirror reflecting my current anxieties, magnifying them. I know the treatment; I have dreamt that at least this time I will not be fed by a tube.

The Silent Struggle

One of the most challenging aspects is the internal struggle. It's a journey that's often silent, unseen by those around me. To the outside world, I am going through motions and routines, but inside, there's a constant negotiation with fear and hope.

Finding Solace in the Present

Amid this turmoil, I've found solace in the present moment. It's in the small joys, the everyday interactions, and the simple pleasures that I find a reprieve from the worry. These moments are precious, not because they are an escape but because they are real, tangible, and grounding. 

I made homemade soup, granola, and rice pudding tonight, a simple pleasure but a distraction it was an unplanned event but now I know my mind was telling me to be busy. 

Sharing the Journey

Writing about this experience is not just about sharing my story; it's also a way to process the complex emotions that come with it. It's a way to connect with others who might be on similar paths and to offer a sense of solidarity in our shared, yet unique, experiences.

A Quiet Resilience

As I await the results, as I walk through this familiar yet different path, I recognise a quiet resilience within me. It's not loud or bold, but it's there – in my willingness to face each day, in my capacity to hold hope and fear in the same breath.

To Those Who Understand

To those who have walked this path, who are walking it now, or who might one day walk it know that your feelings are valid, your fears are understood, and your courage is recognised, even in its quietest form.

Keep attacking!

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

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

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.  

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!

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