Far from where I want to be, but far from where I was
It feels like an age since I last posted on here. In some ways that’s probably a good thing and a sign that I seem to be coping much better since diagnosis.
At my last 18 month PCR test my BCR-ABL was down to 0.118% just shy of 0.1% MMR (Major Molecular Response) the goal of TKI treatment. It’s been what feels like a long time to get here, but it’s just shy of the international guideline, so I feel like it’s going to happen soon, hopefully at my 24 month PCR test. My consultant believes I will be @24 months. I’ll also be having a mutation test and believe that’s just to cover the docs ass (or at least I hope so). Resistance and mutations are 2 scary words no CML patient wants to here, I hope and pray that the meds keep doing the job for as long as possible. Up to 20 – 30% of patients can have resistance at some point. It does worry me that I am already on a 2nd generation drug but hopefully there will be another that works should that day come.
Things lately have become much easier. Sure I still think about my illness everyday AND at multiple times, but it doesn’t disturb me as much as it once did and it doesn’t fill me at the moment with so much dread.
I’ve been managing my stress levels very well with meditation and mindfulness which has been my go to since diagnosis I just wish I’d discovered this wonderful/magical practice much earlier in my life, I believe it would have allowed me the tools to cope through what I consider a very rocky adolescence. I wish many more people would give it a chance it took me about a year to finally see how life changing it is, I believe we live in world where people find it so hard to shut down or sit still for 5–10 mins that it’s no wonder they can’t keep it up or even allow it time to work. It’s not surprising really, we are so wired in this day and age. Still each their own maybe a big catalyst is what people need as in my case just a shame because prevention is better than a cure.
I have been having counselling sessions in London initially once a month and now once a week for it to be “beneficial”. It’s been helping a lot to get things of the past/current off my chest. And I’ve learned some new coping mechanisms namely self compassion, (A good book is “Self Compassion” – By Kirsten Neff) which has so far been really wonderful to learn as it fits in so nicely with mindfulness. The premise of the practice is to be mindful of how we talk to ourselves and how we soothe ourselves in times of distress and self judgement. For the record I suck at this and I speak to myself most of the time like shit. But since learning about this I’ve become much better and in turn feel much better than I’ve ever felt about myself which can only be a a good thing.
I have also returned to the gym and hence the attached picture. It’s amazing to think that at diagnosis I had lost so much weight and I never saw it coming until at some point it was hard to ignore. I was just shy of 12 stone, I am a 6 foot guy and that is lean for me and not in a good way. My usual weight is around 14.5 stone give or take. These days since returning to the gym to build some muscle I am weighing in at about 15.3 which is a good weight for my height and build. It’s amazing how the transformation has gone in a short space of time. I am very proud of myself for having the courage to go back and take charge of my health again. I used to do a lot of weights in my teens and early 20’s but the stresses of life got in the way, so I stopped and started many times. Now I believe I won’t ever stop. Having being given a 2nd chance at life I really want to see the person I know I am capable of becoming. And that for me is a big statement to make. So yeah I am proud, it’s not been an easy journey and I am glad I have trawled through.
Since starting meds my weight has steadily increased and is what I consider a good sign that CML doesn’t quite have the same control it once did. Below is an attached picture of my steady incline over the last 20 months. The lowest dip here is exactly 1 month after starting treatment and the incline is when things clearly started to work. Incredible really.
I recently changed up my diet after watching the “Game Changers” on Netflix. I haven’t gone vegan or veggie but it’s made me so much more conscious of what I put in my body. I’ve cut out all red meats (my personal intuition) and only eat fish and chicken breast with an increase in veg, fruits and nuts. I start most of my days with a blend of Blueberries, Raspberries, a Bananna, Spinach, Greek yoghurt, Actimel, and a scoop or 2 of peanut butter for a protein kick. I believe it’s working well, my hair and skin feels healthier and since starting my folliclitus on my scalp has completely cleared up. Although I used to love a good pick 🤣. Once day maybe I will cut out meat and just eat fish. Will see how it goes, but I do believe meat is a big issue for our health. Maybe even a contributor to my illness. Who knows… Soemthing caused it and last time I checked I’d not fallen into a nuclear reactor 🤪.
I do believe though we’ve all be sold a lie about meats, and I wouldn’t be a surprise if my high stress and relatively bad diet and drinking habits have contributed to my health issues. Such a shame, but at least now I am making some changes. Better late than never I guess. I am hoping it’ll have a positive impact on my CML, I know we are told that diet cannot cure or help this thing but surely anything we can do for our overall health is going to have a positive impact in conjunction with my treatment. I am under no illusions alone that it would. Either way it feels like a great place to be to have some discipline and to be more choosy in life for once. A form of control maybe. Whatever it is i plan and I hope to keep it up. I do feel so much better these days. May it continue and if not I can re-read this post to get back on the saddle once again.