My Cancer Story – Andrew
(So far, the signs are good!)
My cancer journey is a recent one, and so far, the signs are good. It’s just two years since my diagnosis and twenty months since I finished radiotherapy. I hope that my story will help you if you are newly diagnosed and feeling very nervous about what the future may hold.
I retired from work at the end of November 2019, shortly after my 65th birthday. I had lots of plans for my retirement. My wife is younger than me and still working, but we were looking forward to using her holidays from work to travel whenever we could. What we could never have anticipated was the arrival early in 2020 of the COVID-19 pandemic and all of the restrictions that it brought with it.
Dental checkup revealed problems
In January 2020 a routine dental check-up had highlighted that I had a tooth that was started to get loose. This was probably the third or fourth tooth that had gone like that over the previous ten years, each next to the other starting from the back, and on the bottom left of my mouth. One by one they had been taken out and I hadn’t had any problem managing without them. A follow up appointment to investigate the latest loose tooth was cancelled when all dentists closed in the first lockdown.
As weeks went by the tooth got looser and I started to get a lot of pain. I tried to get an emergency appointment but was told I didn’t qualify. It was a real relief when I eventually saw my own dentist as soon as he was able to reopen at the beginning of June. He took the tooth out and I hoped that would be that. Unfortunately, that wasn’t to be the case. The pain continued and the extraction site didn’t heal normally. I was referred to the dental clinic at Halton Hospital who did deeper x-rays and took a biopsy. The next thing I knew I had an appointment with the Maxillo Facial Surgery Department at Aintree Hospital.
Diagnosis and operations
I was seen by Professor Richard Shaw who gave me the news as soon as he saw it which confirmed what I was expecting. I almost certainly had a cancerous tumour in my left lower mandible. He gave me a date for my operation of 24th September. I would probably be in hospital for two weeks and the operation would involve the replacement of the affected area with a piece of bone from my hip. I was also told that I was an ideal patient for a medical research project that would involve a series of eight transfusions of Nivolumab, an established immunotherapy treatment that was being trialled on patients with head and neck cancer. Taking part was voluntary, but I consented immediately as I had no doubt in my mind that it would be worth doing if it might reduce the likelihood of a future recurrence of the cancer.
Remaining as positive as you can be is essential as you do battle with cancer. I consider myself to be an optimistic person and I have always tried my best to work through all the obstacles that life has put in my way and look forward to coming out the other side. This was how I felt when Professor Shaw gave me the news. It was something I would just have to get on with. Allowing things to get on top of me would not really help at all.
When the date for the operation arrived it was very fortunate that an intensive care bed was available, as we were in the midst of the pandemic and I would be spending a day in ITU after before moving back to ward 28 at Aintree. Following the operation I was finally pain-free in my jaw, but had a very uncomfortable hip. I was determined to exercise as much as I could and lost count of the number of trips I made with the aid of my walking frame and then crutches along the corridor to the ward door and back. There was no visiting because of the pandemic, but the wi-fi signal was good and I was able to chat to my wife using Facetime. Twelve days later I was able to come home. The staff on ward 28 had all been brilliant.
Radiotherapy – a necessary evil
I had always known that a course of radiotherapy would begin after I had had chance to catch my breath following the operation. That duly began on November 2nd when I had the first of thirty sessions, every lunchtime Monday to Friday for six weeks at the newly-opened Clatterbridge Cancer Centre in Liverpool, right next door to the much delayed Royal Liverpool Hospital. Everything there was very new. I remember waiting to be called in for my daily session and watching the temporary paper signs on the doors being replaced by permanent ones. The radiotherapy machines are all named after trees. Mine was Birch. Looking back, the sessions themselves were not too bad, although wearing a mask during the treatment took a little bit of getting used to. I was usually tired in the afternoon and would spend a couple of hours resting.
I had been warned that the effects of the radiation therapy worsen after treatment finishes, and this was the case for me. Two weeks later (just after Christmas week) I felt that things reached a peak. My saliva had become very thick and my taste buds had changed totally. I could only manage liquid or very soft food such as Weetabix for breakfast, jelly and yoghurt. My wife would make me things like corned beef hash or shepherd’s pie. We would liquidise these, and I found the easiest way to add liquid was to dissolve an Oxo cube in boiling water and add that.
Eating is vitally important as you recover from the surgery and the radiotherapy. It is central to the recovery process. At times I found it very difficult, especially as it usually involved a major coughing fit as something nearly went down the wrong way. The operation had weakened my swallow and I had lost some of the muscles that help me to chew my food.
I had support from both the Warrington speech and language and dietician teams. My diet was supplemented (and still is) by nutritional drinks. These took a bit of getting used to, but each one is 400 calories, and I was prescribed four a day. Over time my taste buds were slowly recovering and drinking them became easier. I eventually realised that drinking everything through a straw was best. Although I could manage cold drinks, hot drinks were (and still are) a bit of a problem.
Physio for the swelling
The operation had caused my face to swell and I was referred to the lymphoedema team at Clatterbridge on the Wirral. They gave me exercises to do every day. Gradually the swelling disappeared. The physiotherapy team there were really helpful too, again with exercises.
I found recovery from the radiotherapy far harder and slower than recovery from the operation. Changes are gradual, and you almost don’t notice them until you suddenly realise that something is different. It is now twenty months since my final radiotherapy session. My taste buds are much, much better and saliva production is nearly back to normal. In fact, there are times where I feel that I make too much! This has allowed me to move off liquidised food at last. I have to choose carefully what I’m going to eat, and it takes me a lot longer to eat than it used to. I’m now midway through my restorative dentistry treatment at the Liverpool Dental Hospital. All being well the teeth I lost during the operation will be replaced by implants and bridges.
If you are invited to take part in research projects say yes if you possibly can. In my case it meant extra trips to the Cancer Centre for blood tests and treatment – a small price to pay given the potential benefits to you and the help it may be to the future patients who may have to make a similar cancer journey to yours.
Things keep improving
There have been lots of times along the way where people have told me I’ll get there in the end. I have to admit there have been times where I doubted this would ever be the case, but things are improving all the time. Soon it will be two years since my operation. So much has happened in that time, but the important thing is I’m getting better and better. I’ve been helped by very many wonderful, caring health professionals. I have joined the Warrington and Halton Head and Neck Cancer Support Group and I hope that, apart from the help it will give me by being able to compare notes and chat to other people who have had similar experiences to mine, my story will help other Group members in the future. Staying as cheerful and positive as you can is so important. It can often be difficult – the outlook can sometimes seem very disheartening – but stick at it.
Andrew Young, August 2022