Hi, it has not been a fabulous February. And I am not takling about all the horrible news on the TV. In fact, it has been more a frustrating and fraught February with pain, lots of pain.
I commenced the clincial trial last December, a Randomised Phase 3 comparing Ibrutinib with Zanubrutib. It took a long time to decide to enter. After all, I had been well for so long. My last treatment (for CLL), was way back in 2002. The doctors always told me it was ‘when’ not ‘if’ I would need treatment. But I had got so used to having appointments telling me that there was no need for treatment that it came as a shock when the ‘t’ word finally raised its ugly head.
I took up running after suriving the chemo in 2002 and it helped so much, while running the Great North Run and raising some momeny also helped me focus. I felt fit. I almost felt invinsible. Last year I did my first London marathon, so I was on a total high. Running was (and still is), the cure for everything as far as I am concerned. Got a cold? Go for a run. Bad day at work? Go for a run. Worried about leukaemia, global warming, you name it…go for a run. When I finally quit vacilating I realised I was lucky: I had almost left it too late, as I was the last person to be recruited. Apparently they had to plead my case.
So I started my first day of treatment like the beginning of a new adventure. Sure, I was mildly apprehensive about how I would react to the drug, but I believed my running fitness would see me through. I read the Pariticipant Information Sheet and was aware there were known side effects, but I also looked at the statistics and inwardly dismissed each one as unlikely - if there were a 10 % chance I would always be in the 90%. And I thought back to the chemo days and reassured myself that nothing could be as bad as that. And of course this is certainly true.
Things started relatively well. But ironically, the day before I started treatment, I managed to injure my leg (stupidly) and it devloped into a haematoma - then my leg turned red, so 4 days in I was already visiting urgent care to get an opinion (why do these things alway happen on a Friday?). The nice doctor diagnosed vasculitis. I am afraid I fell for this, as next day I did the thing you should NEVER do, I asked Mr Google for an opinion on vasculitis, I had never heard of it. The conclusion from good Dr Google was that it was serious, incurable condition (not another one!). I would be lucky to survive another day, for sure either my veins would explode or I would have some horrible stroke. Of course I went for a run expecting the strange colour, now a beetroot red covering my entire lower leg, to disappear.
Fortunately the diagnosis turned out to be rubbish and my haematolgist explained it was ‘just’ bruising, another recognised side effect. I was so happy! Doubtless linked to the injury as well. Conclusion: Always listen first to your haematologist, they are the only ones who understand what is going on with your blood cancer - in my defence, it was a weekend and I was desparate for an answer.
Nevertheless, after one month of the trial drug I realised things were going well. I had a bit of fatigue, and I did not even mind a bit of diahhorea (better than nausea!), in the grand scheme of things I appreciated I was lucky. This treatment did not exist a few years ago and I am sure the running helped delay treatment,
Then February happened. I am currently training for my 3rd marathon and I had completed a 17 mile run the week before, In fact, my training was going far better than for London (another story). The following Friday I decided to go for a shorter run. After 3 miles I began to feel a really bad pain in my upper leg. mainly around the joints. I had to walk (or limp) the last few miles. Next day the pain got so bad I could no longer walk. I put this down to a transient side effect and got some reassurance that it would self resolve from the clinical nurse. But this went on and on for the rest of February. I was beginng to panic, especially when I was informed at my last consulation that sometimes it can take months to resolve, and sometimes it never does. Now it takes a lot to make me depressed, but I was now becoming really concerned. I tried going for a swim- no joy, I could not even manage a paddle. I tried to walk, it took me 15 minutes to hobble 100 yards, my face contorted with pain. I must have cut a rather strange appearance as I screamed my way to the nearest cafe. Not only was it painful, but I
seemed to be losing all strenght in my legs: a worry for anyone, but even more so for a ‘runner’ I began to think that my running days might be over.
Then March happened. On the 1st March I managed to reduce the pain killers. I still had pain, but it was the first day when it was less. On 3rd March I managed a one mile walk, but the pain came back and I had to start on the pain killers again.
Then yesterday something stranger happened, I came down to breakfast and realised I had just walked down the stairs like I used to do, without having to hop down stair by stair.
Today has been the second pain free day and tomorrow I am planning to do my first run in a month. Just a couple of miles. I am not getting carried away, I know I will need to be cautious. But I had reflected during the dark days that if I managed to do the marathon this year it would be an even greater achievement than last year. And I also know I will appreciate every step, every yard, every time I can move one foot in front of the other. And once more I will realise that I am the luckiest person alive, since like so many of us on this list, I have tasted what it is like to have a life threatening illness and come through, determined to show blood cancer who is boss. And now even luckier because I have experienced for one month what it is like not be to able to run. I also reflected that often the most scary thing about blood cancer is fear of the unknown. I did not know whether this was a permanent disability. I even worried whether it was the beginning of another disease. I had been injured before the London marathon, but I always knew the injury would get better, so this was far worse.
So how do we deal with these dark days? I am not sure if I dealt with mine the best way, but I believe we always need to find the facts and take any actions we can to make things better. And maybe, just maybe, having a fundamental optimisim helps a little, even if I struggled at times to remain ‘positive’ . So please celebrate with me, as I try to get back on my feet. I hope similarly that whatever you face, you can also find your positive energy. Let me know, iand I will let you know how I get on tomorrow (It was supposed to be a Park Run, but it is very late as I write this, as usual the post got longer than intended - well it will be another test, and I love a challenge
Thanks for reading. If you have also been on ibrutinib drop me a line, it is great to share. I hope your own treatments are going well.