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!

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!