My Head and Neck Cancer Story
“Okay, I think you have got a cancer on your tonsils which has spread to a lymph node in your neck. I am not God, but I don’t think it is going to kill you, but we need to deal with it.”
That was how my head and neck cancer journey started. The Consultant was very efficient but also very quick to reassure me. I appreciated honesty like that and it served to get me past the “C” word ‘panic' very quickly and straight into “getting on with it” mode.
After CT, MRI and Ultrasound scans, I was booked in for my operation at Aintree Hospital on the 20th December 2016. There followed a Pre-Operation Assessment and as I had agreed to be part of the clinical trial into HPV related cancers being run at the Hospital, I also attended for “Swallow Tests” to give them a benchmark prior to my treatment starting. Until that time, I had no idea about HPV and its possible effects so this whole experience and the information overload was quite hard to digest.
The operation lasted about 5 hours, involved removing my tonsils and surrounding affected tissue. Lasers are used for this so they are very precise but it still quite an invasive surgery on a very sensitive part of your body. I had a drain tube fitted to the back of my neck and I spent a night on a ward before having the drain tube removed and being allowed home with a neck full of metal staples.
I was able to eat but not easily and not anywhere near the type of food nor volume of food I might have had before, so I nibbled my way through a couple of days in the run up to Christmas. My mouth was sore and I had lost a lot of sensation in my mouth, tongue and neck, some of which was to come back eventually.
We have a dog and as most people at that time of the year are fully booked, I had to take him back from the Dog Sitter on the 24th December and start walking him again, three times a day.
Thank goodness for Alfie the Boxer! The fact that I had no choice but to get up, get dressed, go out in all weathers, meet other dog walkers, talk about what I was going through and be asked questions about the whole experience, really helped me deal with everything. True, a couple of people could not really deal with it and would talk about something else immediately, you soon get to recognise people like that, and that is fine, of course. The vast majority were kindness and supportiveness personified.
Christmas Day was my first “low”. We had decided on a small scale “Christmas dinner” but my wife made a lovely plate of roast chicken with all the usual trimmings, which looked great. I sat and looked at the food and realised I just could not eat it.
I am not quite sure what I felt but it was a very sad realisation. My mouth was still sore, my neck hurt, I could not open my mouth much at all and in the end, the meal was almost completely wasted.
The results from my operation showed that the team had not quite managed to remove as much affected tissue as they would have wanted, so on the 4th January I went in for another operation, this time for just a couple of hours, and this was successful.
My next meeting with the Consultant was shortly afterwards and I was told that my tumour was HPV positive and that it would require me to meet the Oncologist to see what his recommended treatment should be.
The Oncologist met with me and told me that my tumour was not high risk so I would not need chemotherapy, just radiotherapy, six weeks of it. Therefore, I was sent to Clatterbridge Hospital on the Wirral to see staff in the Mould Room, the Dentist and the Nurses.
You may well have seen pictures of such face moulds. The nurses do a fantastic job of massaging the mould to the contours of your face and neck but the consequence of that is that when it is used in earnest, it is a very tight fit to your face. Some people find this hard at first but you do get used to it quite quickly.
At the end of the first week of treatment a Doctor asked me how I was feeling and when I said, “Fine”, he looked at me and said, “You do realise it will get a lot worse?” He was not wrong.
The mouth pain started towards the end of the second week and continued throughout the six weeks. The only way I can really describe it to anyone is this: it is like someone has lit a match and then put it in your mouth. Painkillers help with this but some of these cause constipation so you end up taking more medication to help with that. Very soon your day is one long medicine- taking activity. Not only did I lose my sense of taste but food that I used to love, like rice pudding, had the sensation of gravel in my mouth. Other food was like eating cardboard.
It was now that I started to lose weight as I just could not eat properly. I really did not want a feeding tube so I persevered with normal eating, but ended up dropping from about 75 kilos to 65 (12 stone to 10 more or less). At the end of the six weeks, the nurses told me that the pain would linger for a while, maybe a couple more weeks, but my mouth and throat developed Mucositis, which is inflammation of the mucosa and as stated above, it is equivalent to the “lit match” sensation - very painful.
About two months after the end of my radiation treatment, the pain started to subside and I found I could eat fairly normally again. Gradually, the weight started to creep up and the Dietician was at last pleased with progress.
A couple of months later, feeling slightly stronger now, I asked for a referral from my GP to the local Gym and I asked for a muscle build programme, which helped me put back the muscle mass I had lost. It was a twelve week programme and I went twice a week, being assessed at the start, after six weeks and at the end. I set myself some targets and managed to achieve the required weight gain. I then stayed with the gym for another 6 months until I had regained all of the weight I had lost.
A year on from the end of my treatment, I feel very good considering the journey I have been on. It is rough and tough at times; there will be lows and you may have bad days; but if you try and be positive, keep things in perspective and be glad for the little victories along the way, you will get through your own journey.