Onwards and Upwards No 20
Hello my healing team,
I hope this update finds you well.
It has been a little while since I wrote my last update. Whilst writing my updates is usually a sanctuary for me, I just haven’t felt like doing it. I just haven’t had anything that I felt like sharing in this format. I have been reflecting on my updates, and I want to use them as a tool to motivate people. To show strength and lead by example. With that, sometimes I don’t always give a totally accurate account of the challenges and the adversity that my family and I face. I have spoken with a few of you about my circumstance, but many I have not. This update is not intended as a ‘pity party’, it’s just me sharing with honesty.
I have a disease where statistics say that in eight years from now I won’t be here with you to share the good times or the bad, laugh with you or cry, to walk or talk. I do everything I can to remain positive and I constantly tell myself (and others) that I will live until I am 80. But with this stat hanging over my head, my positivity is silently tested. It is further tested every time I read that another Myeloma patient has died. I read that on a weekly basis and I can’t avoid that reality.
When I am struggling with my circumstance, I often brush the emotion away and tell myself that I must be strong! I tell myself that I have to believe that I will live until I am 80. Geeze, if I don’t fully believe it, how will the cancer get that message and know it needs to piss off? I try to use a voice or vibration strong enough so that it knows I am serious. But when I see the stress and sadness in Sarah’s eyes as she struggles with the thought of losing her life partner, it breaks my resolve. I don’t give in, but it does become particularly real. It also becomes real when I have that discussion with Sarah about me dying. We never broached the subject before, but we did recently. I spoke with confidence as I don’t think this will happen any time soon, but it sucks having to talk about how Sarah will manage after I am gone. How does Sarah manage when the kids are having a tough day, how does she manage when she is having a tough day, how do the kids manage without a dad, will Sarah have enough money to maintain the family, will the kids be able to do their activities, can she stay living where we do? I am only 41. Sarah is not yet 40. Why should we have to talk about this now? It’s just crap.
Death is one aspect of cancer we have to face. Dealing with cancer whilst alive is another aspect. Nearly 12 months ago, we all celebrated and danced a little jig when I found out that I had managed to achieve complete remission. The great thing about being in remission was that whilst there, there was no disease progression. There were only (relatively) minor physical effects, and I could live pretending that I didn’t have cancer. That paradise was shattered when I was told I had early disease progression. Despite doing lots of positive things to maintain wellness and despite me ‘willing’ myself to maintain complete remission, cancer just laughed at me and quickly re-emerged. F&@k you cancer!
The challenge of not being in remission is that I am now exposed again to its life changing effects. At some stage soon I will recommence chemo. Drugs that make you want to vomit, you feel pain and you feel tired. I have to plan my weeks with doctors appointments, and I have to plan my months knowing that I may be recalled into hospital for a stem cell transplant. The ‘allo’ stem cell transplant is my best chance at long term remission, but it also comes with it own stats. Stats that say that 10-30% of people die from this procedure. I quote that with hope because that means that roughly 80% of people survive, but it still sucks to have it on my horizon.
Regardless of what you have just read, when I see you next, I will smile, I will show positivity, I will be strong. I will interact with you in a very normal fashion and I hope you interact with me in the same way. After all………….I am going to be here into my 80s.
Onwards and Upwards.
Take care
Geoff