I was diagnosed with stage 2/3 cancer at the base of my tongue and tonsil in March 2020, just as we went into lockdown. I was 58 years old. My treatment didn't start until August 2020 because of lockdown, and it was an odd time for all of us. I would call the reception to say I was in the car park, and then the treatment centre would text me to come in once the previous patent had left and they’d disinfected the room and treatment table.
Coincidentally, a good friend had gone through everything I did, sharing everything very openly on social media, but soon after the treatment finished, his cancer came back with a vengeance and killed him inside 6 weeks. This was my only close contact with cancer, so perhaps it seemed scarier to me just because of him losing the battle.
Before my treatment started, I had a meeting with the head oncology consultant at the treatment centre ( Mount Vernon) who booked me in for a meeting with a dietician and had my mask made. I also had a dental check as they told me my teeth would weaken significantly as a result of the RT. I also had a stomach tube fitted, and this was a godsend, even though I threw up a lot as a result of the milky fluid I was pumping in, it later just about helped keep me from being admitted to hospital with malnutrition.
I was told that I needed to allow at least 4 months for the treatment phase before I could function normally and get back to work, in fact this proved to be a cautious estimate.
Leaving the hospital after the feeding device was fitted, also known as a PEG, I suddenly had a really strong pain which almost took my breath away, and we rushed back into the ward to have another pain killing injection. Then another four hours later and the sharp pain subsided enough for us to go home. The device is sewn into place initially, with the stiches being cut a couple of weeks later, but as the tube exits to the front, just under my ribs, I couldn’t hug my wife without it hurting as the pipe was squashed, and soon I began twisting to one side as she approached, a hard habit to get rid of !
A few days later, I had the first of two huge bags of Cisplatin and also my first day of RT. The chemo turned me into a semi lifeless blob, it was a huge effort to even speak let alone move, this lasted for about 3 days. I also felt sick all the time. The RT changed my tastebuds very quickly, and by the end of the first week all food tasted like cardboard - not that I could face food anyway, as I always felt so sick. I began to lose weight.
My daily routine consisted of awaking (which was very hard) , cleaning the PEG wound, then a round of painkillers (4 in total) every 4 hours and then an attempt to eat. After around three weeks I had to begin injecting the sickly high calorie milk shakes, but most of the time I threw them up and hated them. I had a phone call every Monday with my treatment consultant, one with my dietician and one with a speech therapist, found them a bit of a waste of time. This would often take over an hour, and was probably quite effective if attending in person ( so they can keep on eye on your weight) but as a phone call, it was repetitive and also increasingly hard to use my voice. The speech therapist gave me a list of painful exercises to keep my swallow reflex alive. If you lose this reflex, it becomes very hard to restore, and obviously a huge issue if you care about not pouring a whole cup of tea into your lungs.
Soon, within about 10 days, I was inundated with symptoms. Ulcers and blisters formed inside my mouth, and my tongue turned black. The throat pain became significant, and I looked forwards to the hour or so post medication when the pain subsided, and I could briefly sleep. However, my body began to react to the blisters and began generating huge amounts of thick mucus. This became a significant problem later on. My neck turned dark brown, and the skin began to fall off. They wound from my feeding tube began crystallisation, where new tissue grows to try to fill the wound, but it seemed to have open nerve endings and really stung like a hornet’s sting - However, a cream was sourced by my wonderful Macmillan Nurse and this soon took care of it.
The mucus became a big issue for me, and it was very difficult to breathe. My wife bought a steam generator, and we also received a device from the hospital, which was very noisy, and gave brief relief (probably 5 mins max). As I returned after 4 weeks for my second round of Chemo, I met a guy who was still quite overweight and had real issues with mucus and breathing. I was worried for him. I shared my experience with Mucus with him, as he had no apparatus to help him breathe, but as he as hooked up to his chemo, he fell into real difficulties with breathing and was immediately admitted into the main hospital, and I didn't see him again.
Increasingly, the treatment was making my hair fall out, and there was no need to shave, as the hair production stopped completely. My skin was super smooth, at last a positive!
What I can’t convey is the throat pain. I was called in during week 5 to demonstrate that I could still swallow, the therapist made me bring a bottle of water and I had to demonstrate I could gulp it down. I had completely stopped this in about week three, and it was too painful and especially the “gulp” was agony. Somehow, I managed to swallow a small mouthful, but wow it hurt. Imagine that someone applies a blowtorch to your throat lining every day for 8 weeks, so there’s never any recovery or repair of the damage, it just keeps getting worse. Eventually, around the end of my treatment, I couldn’t do anything due to the pain, I was just awake 24/7, mentally and physically crying with the pain, so we went back to my Macmillan nurse who out of nowhere sourced me a litre (yes honestly) of morphine with strict instructions not to take more than a tiny syringe full. I took it immediately, and finally fell into a deep sleep. It seemed to begin to to kill the pain, then knock me out and the feeling of the pain subsiding as I fell into a deep sleep was incredible, such a gift. I can understand how people get addicted.
Around week 6 and suddenly, out of nowhere, a radiologist pulled his mask down (remember we were in lockdown) and mentioned that I was responding well to the treatment. This was the first time anything was mentioned about my progress to me by anyone, (in spite of the three calls every Monday with the various specialists) and I remember getting into the car and sobbing helplessly for about 10 minutes. I guess they don’t comment or aren’t allowed to, especially if the news is bad or even neutral, perhaps leaving this to the consultant in charge of the therapy and your personal treatment plan, but it was on overwhelming relief. The treatment was working! It was all worth it! That tiny moment is deeply etched into my memory and psyche forever – It was like having a wrongful death sentence lifted by the judge I’d imagine.
Once I was diagnosed, I was utterly focused on optimising my chances of having it treated successfully, and I think I became absorbed in doing anything and everything I was told to make sure I had a good outcome. I become so absorbed by my daily routine, the pain, the discomfort, the scary symptoms like my tongue turning black (I thought it was going to fall off – I couldn’t feel it anyway) that I didn’t really consider the chance that the treatment wouldn’t work. Suddenly, I reached the last day of my treatment, no more RT and I was given my mask from the Linear accelerator table as a trophy.
Suddenly, I entered a new phase, which was much scarier. The treatment, which had filled my days for two months was over, although what I didn’t realise was that the radioactivity in my throat continued to grow and get hotter, until a couple of weeks later it finally began to subside. I was now not actively being treated, but I had to wait a couple of months to be scanned (no point scanning when the throat is still radioactive) and find out the truth. Unfortunately, my PET scan was just before Christmas, and on approximately 22nd December I found out I had something suspicious in my pelvis.
At this moment, I was quite depressed. I had decided (upon advice from another cancer patient) never to google the disease or symptoms, as it easily becomes too frightening – But I felt cheated and equally prepared for the worst, so I began to google pelvic cancer. I wish I hadn’t as it seems to be infinitely worse than my type of throat cancer! Thus I spent Christmas in a trance, waiting for the next scan to precisely identify what was happening in my pelvis. Gradually the mucus had begun to subside, and although I couldn’t eat and had lost around 15 kg (I was 81kg when I began treatment) I really wanted to eat Christmas dinner with my family. This proved impossible and too painful, but the other symptoms were also subsiding, and by the end of January, I was able to swallow soups and other soft food without too much pain, although I couldn’t really taste food properly until the early Summer. I’d say it took a year to fully recover my tastebuds, what took the longest was to be able to taste the sugar in fruit - It all tasted of just water until then…
Finally, my MRI scan suggested the suspect cells in my pelvis were an Angioma and getting this news (over the phone via my Macmillan nurse) was a powerfully emotional event that I won’t forget. I now had my new (post cancer) life ahead of me, and although I was weak and pretty thin, I felt like several million dollars.
It’s now three years since I finished treatment, and I have had a couple of scares. One thing cancer does is make you (or at least it did with me) very aware of spotting further symptoms early, so I have maybe become a bit paranoid. I had a scare when my sub mandibular salivary gland became blocked, and as this created a lump very near it where my cancer was. I used my Macmillan nurse to quickly get me in front of an ultrasound specialist, who gave me the good news and that became my 3rd big emotional moment. I have also had a few scares with throat pain caused by acid reflux, and also some severe bone pain in my femur, which has now vanished, but gave me a big scare again!
On reflection, I was lucky to have had my treatment during lockdown, as my furloughed wife became my incredibly patient and dedicated full time career (I can’t imagine trying to have supported myself during treatment – in fact I’m not sure it’s even possible to) and I must say that every single person whose help or advice I needed was absolutely incredible. It might sound corny, but I really felt they all cared about me, from the initial ENTconsultant (who is an incredibly talented man in his own right) to the treatment and cancer centre staff, the radiologists, the speech and diet therapist, and especially my Macmillan nurses. They were always available (and remember this was during the height of lockdown, putting their own lives at risk) and really truly cared about me and my woes and became great friends, both to me and to my wife. They always helped with practical care, advice, sometimes equipment and additional medicine, and always found a terrific solution and couldn’t have been more helpful. These ladies are absolutely essential to help survive the treatment (if that makes sense) and no-one can praise them highly enough.
Finally, I realise now that my wife was going through hell too. Unfortunately, throat cancer radiotherapy is quite tough, with a lot of symptoms which all try to incapacitate you, and it becomes an exhausting fight. I found that I was focused on getting through each day and night with as little pain as possible and didn’t have any extra capacity to try to consider my wife’s fears and mental health. I had “got my affairs in order” and taken her through all of our finances, created spreadsheets, written my will and many other things to make her life better if the treatment wasn’t successful, but was wrapped up in my fight and couldn’t really console her - in fact there probably is no chance of meaningful consolation, only the results mattered and I’m grateful that she has some wonderful friends with whom she could really share her feelings. Equally, I didn’t share my fears with her, and although it might not read like I did, I tried very hard in front of her to minimise the mental and physical position I was in and actually try to create some encouragement for her to believe it was all going to end well. For this reason, the radiotherapist who told me that my that my tumour was responding well cannot ever imagine how we hugged and cried over that tiny almost casual comment that day.....
