I’ve never written in detail about my experience of cancer, but now feels like a good time because today is the 5 year anniversary of the operation I had to take the cancer away, and today I’ve been chatting with a friend who is at home dealing with an infection that has arisen following an operation to remove his cancer. I am 42. He is 39. We are both still young.
When I was younger, as a child and young adult, I thought old people got cancer and then died from it. I’m not really sure I believed that cancer affected the young, although I had experience of young people dying from cancer, and I always had a sneaking suspicion or fear that one day it would affect me, although I was convinced that it would end my life. I remember in particular an advert they used to show on the TV when I was in my teens. It showed 3 girls running through a field of corn in the sunshine, laughing and playing. Life was good. The ad ended with the shocking title setting out that 1 in 3 people would be treated for cancer during their life time. I would look to the other 3 members of my family and do the math. As an adult in my own nuclear family there are three of us. I concluded that I would be that 1 in 3.
In October 2007 we had a family trip to Sydney, Australia. This is the first memory I have of the ulcer, the first time it registered. It was the best holiday I’ve ever had, but what clouds all the warm, happy memories of our time there was the throbbing discomfort on the side of my tongue. We saw all the sites, ran around the Opera House, Manley and Bondi Beach. Visited the surf club at Summer Bay…all the top spots (!), and I resolved to get the ulcer seen to when I got back, which I did, but not for a few months to give it chance to clear up. The GP told me it was nothing to be concerned about and gave me a prescription for a mouth wash and sent me on my way.
In September 2008, I was in pain. The ulcer was still with me and it was affecting my speech. As it rubbed against my teeth it brought tears to my eyes and it was affecting me in work. Something had to be done….soon.
It seems absolutely stupid to me as I’m writing this that I allowed it to go on for so long. But back in Sydney I had been thinking…’this could be cancer’. I was frightened, and I hate doctors. I’d seen a programme documenting John Diamond’s illness and eventual death at the hands of throat cancer a year or so before and it frightened the hell out of me. I had never imagined such a debilitating and horrible illness, taking his voice and his ability to eat and enjoy food – his wife is an amazing cook for Christ’s sake. How cruel is that?! I read his book ‘C – Because cowards get cancer too’ when I was bed ridden as a result of the radio and chemo therapy in 2009, the idea being that it wouldn’t frighten the hell out of me again and, with a bit of luck, no matter how vile things were at this time, I would not have to endure that level of pain and suffering. It’s a good book. You should read it.
At the end of October 2008 I dragged my cowardly backside back to the GP who took one look and referred me to the Head and Neck clinic. The appointment came through almost immediately. That scared me. I chatted to my sister and jokingly shared my fear, ‘what if it’s cancer?’ Don’t be silly, it’s nothing like that, she reassured. Exactly what I’d hoped she’d say.
I had my appointment a couple of days later and they took a biopsy…now I was convinced. A few days later I went back for the results and took my husband along expecting the worst. We played a game while waiting. If a consultant come to collect us from the waiting room and takes us to a consultation room rather than into the dental surgery area…I’ve had my chips!
The consultant came and asked us to follow him, down the stairs to a small consultation room where we had to wait. I said goodbye to my chips.
In came Mr Fardy. Maxillofacial surgeon extraordinaire and….
We were given the odds and asked to wait until the MacMillan nurse could join us to explain what would happen and how we would be supported.
My thoughts immediately turned to Ellen. She was six. Would she grow up without me?
Questions I asked:
– Will I have to have chemo?
– Will I have to have radiotherapy
– What are my chances?
– How much of my tongue will I lose?
– Will I be able to talk?
– Will it affect my speech?
– Will I die?
– When will I be back in work?
– Will I die?
Answers I received:
– We don’t know.
I left the clinic with Martin. We were in shock. I was clutching the ‘How to cope with cancer’ booklet as I crossed the road heading back to my own office in the main hospital building. I kept my head down, laughed at a joke a colleague made as I passed them in the corridor, grabbed my stuff and left. Work was not important anymore.
A week later I was admitted for surgery and a new journey started.
In the period in between, we planned Christmas. We bought and wrapped the presents, planned the shopping lists of festive food, decorated the house and held our breath.
Being six, Ellen took the news very well. She is a practical child and so was not too emotional about it but was keen to know the facts. Martin and my parents took over. I had nothing to worry about. Everything was under control.
On Thursday, 13 December 2008 they wheeled me down to surgery where I would undergo a 12 hour procedure that involved the following:
– Remove the cancer from my tongue cutting away a big enough margin that would give good odds that the tumor and all cancerous cells would be removed
– Take a ‘flap’ from my arm, along with blood vessels, to graft on to the remainder of my tongue in the hope that I would be able to eat, drink and talk post op
– Remove a section of skin from my stomach to graft on to my arm to replace hole left by flap
– Remove all lymph nodes from the right side of my neck
From what I understand of the procedure, they made an incision that runs from behind my ear down towards my clavicle and takes a turn into the centre of my neck. This is the entry point. From here, they peeled back my flesh to expose my jaw and tongue, allowing Mr Fardy to get in and do his stuff…cutting, patching and stitching.
I spent the weekend in hospital, aching to be at home. I shared the ward with elderly patients who had other head and neck cancers. Dreadful injuries. It was not a good environment and I worried that we shared the same fate, but after a couple of days I felt well enough to see Ellen.
My neck was held together with staples and swollen like a football, I couldn’t speak very well and I had a feeding tube coming out of my nose. How quickly we become accustomed to new circumstances and adjust to the new normal. Of course, in retrospect, it was a bad idea and Ellen was uncomfortable seeing me in that condition. I think it upset us all, but soon enough we were laughing again.
I spent time recovering in the following 2 months. Recovery was blighted by infection, then more recovery, endless trips to and fro the hospital until I was well enough to undergo the radiotherapy and chemo therapy treatment they had prescribed as a precautionary measure. All the while I asked questions but the answers did not change.
I was fitted for a plastic mask that fitted flush to my face. Every day for 5 weeks i would put on the mask, the mask would be screwed the the bed and my face would be blasted by the futuristic radiotherapy hyper blaster ray gun. At week 2 and week 4 I had a dose of chemo for good measure.
I lost 4 stone in 8 weeks. Eating was just not an option. I slept until it was time to take a new dose of drugs, then I would sleep again. Drinking was restricted to water to swallow the pills and liquid morphine. Everything made me vomit. I realised that the surgery had been the easy bit and I was depressed at the realisation that the therapy was taking me to the brink…in order to kill the cancer they had to take me so close that I believed the therapy would kill me.
On day 3 of week 5 of radiotherapy I was broken. I resolved that by this stage, if the cancer was not dead than so be it. I could not endure any more, and I missed a day of radio therapy. I had been vomiting 15 to 20 times a day. I was exhausted, depressed and my credit card was at its limit from weeks of online theraputic shopping. Enough was enough. But, like a child playing truant, the headmaster caught up with me and dragged me back to school to complete the punishment.
By the end of March, my punishment was over and all I had to do was get better, which I did at a remarkable speed. Having truly believed I would die of radiotherapy treatment, by June I was back in the gym, planning a tour of France in the campervan, embracing every day and enjoying the small pleasures again. Cancer had saved my life!
I realised how much running was a part of my life and how much I’d missed it, so in the October of 2009 I ran the Cardiff half marathon again, this had been my main aim during the months of recovery. The following September I did my first 30 mile event in the Brecon Beacons achieving one of my fastest times ever – I thought I was invincible!. This was followed swiftly in November 2010 by my first, and only road marathon. In December 2010 a friend (Leigh!!) told me about some bonkers event in the Lakes which involved running 50 miles over the passes and through the remote regions of the national park, there was also a 100 mile version! In July 2011 I completed the Lakeland 50 and this blog documents the rest.
There’s no moral to this blog, or lesson or anything like that. I just wanted to write about it. I could say so much more, but I’ve bored myself into wrapping this up quickly. Perhaps in 5 years time I’ll write some more x