At the time, Abbey was a front-line worker at a care home and a supermarket. Luckily her job allowed her to help home school the kids during the lockdown allowing me to work and then look after the kids while she worked nights and weekends.
For this, we were incredibly lucky compared to others.
Then just as summer started, Abbey found a lump on my left shoulder close to my neck. Really quite small, smaller than the tip of a snooker cue. Only detectable by pressing quite hard - I was getting a much needed massage at the time. We looked at it again 2 weeks later and lump still there so off to the doctors! Doctor said absoloutely nothing to worry about, but just to be sure they will stick a camera down my throat.
2 months later (yay Covid-19) I finally got to see the throat specialist. He put a camera up my nose and down my throat. Yuck!!! He couldn’t see anything wrong. However, the lump was bigger. As the camera turned up nothing, a biopsy was required.
Now the NHS started to take a bit more seriously and the appointemts came quicker. Over the coming months I had numerous tests all coming back blank, the doctors were confused as to the growth. I then had a more invasive biopsy that finally returned the cause - Melanoma. This came as quite a shock to everyone, including the doctors, as there was no obvious primary site as it starts on top of the skin and apparently lumps from it don’t travel too far. So I was examined from head to toe and no primary site found. They even stuck the hateful camera down my throat again via the nose as the throat specialist wanted another look. Again, nothing.
But this was not a shock to me because I had a golf ball sized lump of Melanoma removed from my back almost 20 years ago. At the time it was a simple “We’ll cut that out right here” in the doctors surgery and I went to work afterwards. Then I got a letter saying I needed an operation as it was maligant. The operation was deemed a resounded success and after numerous checkups I was given the all clear.
But of course, like the best evil villans they always come back for the sequel. This time around though it’s a lot more serious - due to the now sizeable growth I was sporting and it’s was now pressing against my neck an operation was impossible. Too much vital stuff to cut through as they need to extract healthy tissue as well to prove they got it all.
Now medical science has come a long way and I embarked on a course of Dual Immunotherapy. This was only approved for use on the NHS in November 2018 so I’m very glad the cancer waited for this to be available.
Unlike the prior surgery, this is a lot more dangerous as it takes the brakes off your immune system and it can attack healthy parts too. Day zero, my left knee buckled and left me hardly able to walk or get up stairs. Doctors still doubtful if caused by immunotherapy as it was hours after the first session, normally it’s like over a month. I’ve lost a lot of weight, I barely ate, the pain in my knee was agonising and left me with little sleep. I was weak, tired and grumpy. And the lump on my neck got bigger and bigger.
Here is a picture of me and my lump, November 15th.
Now clearly visible and the pressure againt my neck is uncomfortable
at all times.
At the end of November, a blood test prior to my 3rd treatment showed that my liver had gone critical. If not for Covid-19, I would have likely been hospitalised, but instead we agreed I come come in every day for a blood test and based on the results, given a dose of Prednisolone, a steroid intravenously and then sent home. Did I mention I had little sleep due to my knee? Now I get even less. At the worst, I got about 2 hours sleep a night at best it was 4. Sadly this also meant that I had to stop the immunotherapy as it won’t work with steroids.
The week before Christmas my liver showed signs of recovery and I was allowed to stay at home taking steroids pills (lower dose I think) and do a blood test every other day due to the holiday season so they can remotely monitor my recovery. But the lump grew again and was pressing really quite hard. I started to get a lot of pain and the shoulder became impossible to move. I was getting pretty scared now. Barely any sleep, plenty of pain and discomfort.
But Christmas itself was a joyous afair. Even with Covid-19, my side of the family was able to make the yearly trip which I was very thankful for. I kept on saying to myself Roy, this is the last time you’ll see them. Of course they all knew what I was going through and they could see I was really struggling just moving around.
After Christmas, the pain was too much.
You can see from the below picture just how much the lump has grown in
just over a month.
I had a meeting with my specialist over the phone and based on what I said, she wanted to put me on the targeted tablet approach. This is not immunotherapy, it’s much less invasive to the system and can be taken on steroids. It also quickly reduces the size of the growth, giving comfort. But it also has a low life expectancy - the median is 11.5 months. Not even a year. Still, more than the 6 months with no treatment.
I did not accept this. I have young kids to watch grow up and a loving wife to grow old with. Life and time are the two most precious commodoties we will ever have. Grudgingly, the specialist agreed that we would do more tests to see how my body was otherwise coping. The most important test was the PET scan which would show if the cancer had spread. Even if the tests come back fine, the doctors did not want to offer me a false hope of restarting the immunotherapy, because they made it clear right there that the drugs do not always work. But we knew this already.
So this is how I saw in the New Year. With the growing pain and growing lump, increasing confusion, short term memory issues and feeling very light headed, I was already expecting the worst, but I still wanted the best. I resolved that if I am given the choice I would beg to continue the immunotherapy and gamble my life but I had also accepted that if my body can’t take it then I’ll take that last year.
Today, 5 days later, I got the results of the my tests. Not only had the cancer not spread, my immune system was killing it!!! So, the cancer was being killed from the inside but it was growing on the outside. My liver is almost back to normal levels as well and in 10 weeks I will be steroid free so if I need more immunotherapy then I can continue with a single drug rather than two. It’s kind of a suppliment to the dual dose of different drugs which you have 4 times. I got 2 doses, so half way.
So my hope is that I have enough of the dual inside me to kill this off and if not, I can live long enough to become free of the steroids to continue the immunotherapy treatment.
From being convinced I was facing terminal cancer in under a year, I find myself in the very lucky position of facing the possibility of much longer as the treatment is working, albeit wrecking other parts of me in the process. But that’s a small price to pay…
Do I dare to dream about the possibility of reaching No Evidence of Disease?
Who Dares Wins.
If you made it to here, thanks for reading. I was in two minds about writing this as I removed myself from many online groups including gaming and IRC technical channels some time ago just giving the grounds of ill health. I’ve always been and still will be reachable via email as I can respond when I am able to. This is the first time I’ve talked about my condition publicly. I have no immediate plans to return to the online groups I have left, but I also felt I needed to write something after todays news that maybe one day in the future, I might be back.
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