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!

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.  

3 year all clear

The wait at the specialist clinic was only 90 minutes late this time. An emergency delayed everything! Interesting point but it happens every time. From a customer service perspective it hard to get angry with the people that saved your life and may do in the future so you chill and smile, underneath seethe.

Today's appointment gave me the all clear. As it is my 3rd year appointment I now move to a 4 monthly appointment regime. I also have the emergency call in process if I feel things are wrong, which have worked well in the past 3 years.

I gave Jeanette my usual hug when leaving the ward but also had in the back of my mind "I hope I have my husband back now"

Her comment were not flippant but serious. I am a pain in the week leading up to my 3/4 monthly check up only to be expected but those you are closest to you notice it. I suppose if you have not been through an experience it is difficult to explain but there is no excuse for being a grumpy old man.

Cancer can make you insular, perhaps a warning for us all talk about your fears of impending hospital visits rather than hiding behind a mask.

So things are fine lest keep attacking and see what the next 3 years bring.