There is a certain security that comes with ignorance.
I’ve spent so much of my life planning ahead, trying to achieve as much as I could with my ability whilst not really knowing how it would pan out, if I’d succeed or even if the decisions I had to make were the right ones.
But through that uncertainty came the enjoyment of a challenge and the knowledge that if I put in the effort and the moons aligned in my favour, I might just end up where I set out to.
This post has been the hardest one I’ve had to bring myself to write.
Before last Friday, although there was always the proverbial elephant in the room about the true nature of myeloma, I’d been able to compartmentalise the severity of the disease and press ahead with the treatments in the hope that the drugs would work and my family, friends and I could settle into a new normal, of life with cancer, but a norm non-the-less.
I asked the direct questions and got direct answers.
The chemo has got me to a place that is much better than a year ago but for what ever reason, which is still unknown, my myeloma is more resistant to chemotherapy than others.
There is still no donor (they are searching the registers again) so we will now crack on with an autologous transplant (my own cells) starting 16th April.
I can however only have 2 stem cell transplants as any more, according to research, do not elicit any positive results.
This means I am reliant on the transplants giving me a solid number of years remission before I have to call upon the remaining drug treatments.
With the current crop of drugs available, the precise words used by the consultant were
“If you make it through the next 7 years, you will have done well.”
Let me just put that in context.
If no donor is found, 7 years is the figure derived from 2 autologous stem cell transplants giving a year of remission each (could be more, could be less) and the remaining drugs available being able to keep the myeloma in check for an average length of time.
If a donor is found, the hope would be that remission could be longer.
Obviously, sadness is the overwhelming feeling I have. But not because of the challenge of going through treatments.
It’s what I might not get to experience with my family that fills my head and heart with most disappointment. Not seeing my boys grow up, succeed and fail as we all did. Leave home. Meet partners. Become the men I know they can become.
Jenn, Max and Seb do not deserve this.
And I want to be a husband and dad to my family. To be there to play that role as they all go through good and challenging times. I married Jenn under the assumption that I’d be that grumpy old man (yes, grumpier than I already am!) in the rocking chair on my porch in years to come.
I can almost map out my future which right now, is a truly painful knowledge to carry.
Ignorance can be bliss.
When all is said and done however, nothing has really changed.
I do not ignore the conversation or the projection but I have no intention of simply accepting this as written. I have control over my approach and attitude and fully intend to focus my efforts on getting through every stage of treatment and coming out the other side for a considerably longer tenure than 7 years.
I have age and fitness on my side so even if all I can do is go to the gym and moisturise regularly, then that is what I will do.
What I can also do is find someone with the same obscure genetic makeup as myself; so getting as many people signed up as far a field as I can, is now my goal. Selfishly, I am of course doing this for my own survival but having seen firsthand the damage this illness can inflict upon the patients and their connections, this can only be good for the many people in a similar situation.
I have always said to Max and Seb that even when things get challenging, to never give up.
This is a mantra that I genuinely buy into.