Looking out the window from Ward Rangitoto, there are amazing expansive views over the Auckland harbour and beyond. Like us, people are waiting and hoping for more than a view when they see the specialist.
It’s now our turn.
That moment you hear what you don’t want to hear, as in “You don’t have years to go”, and with it, a new journey in the form of a bone marrow transplant (stem cell transplant is another terminology) begins.
It is early days with ongoing tests and a search for a suitable donor. Here is a short version from the moment our lives together changed, lessons to be learnt and personal growth to be had.
It was the 31 December, 2018, when the Oncologist confirmed his diagnosis of having Primary Myelofibrosis (a rare bone marrow cancer).
During 2019, it was early days, and hope was in the form of a drug that would lessen his symptoms as we knew it wasn’t a cure as there isn’t yet a drug available to erase this horrendous cancer. We kept our minds focused on a future together and even managed a few trips away.
At the start of 2020 came our acknowledgement that cancer was slowly wearing him down with more hours of sleep needed; knowing that Chemo brain is a “thing”, continued weight loss, bone pain and spleen growth and the realisation that his drugs weren’t working as efficiently as they should. A change of drugs was needed. Ruxolitinib was his last drug option.
By early 2021, it was pretty evident that Ruxolitinib wasn’t working as well as we hoped. Tiredness and a sense of helplessness was a continuous albatross around his neck, trying ever so hard to drag him down. Most days, it seemed to win, and on others, he grabbed it by the balls and said, “Fu*k off,” and he achieved more on those days, and it was so good to see his spirits soar and experience the demise of that albatross.
“I won’t go a day without a smile and laughter on my lips, in between the moments of sheer anguish”
While we navigate ourselves through this, I will be erratic with blog posts and catching up with yours. However, I will try and share snippets and a dash of cancer humour from my perspective of of being a carer and supporter with the hope that it helps someone stay reasonably sane and positive on days when “hell” must surely be more pleasurable than their current reality. Not all future blog posts will be about our upcoming journey as in life there needs to be some light relief!
Thank you to all those special people who are supporting us through various ways. Just to let you know we appreciate it beyond words.
With a big dose of optimism we are hoping for a fairy tale ending.