If I’d tried tapping away my thoughts 2 weeks ago the following would most likely have hit the page;
The last few weeks have been challenging, more so than I’ve personally felt since diagnosis; certainly it has become more of a mental battle rather than just physical.
A few pieces of news have contributed to a change in what I thought the plan for treatment were, so here’s a brief update.
I was really hopeful that after the last blast of chemo I would be ready for the stem cell therapy. I’ll find out on Monday 16th October what the latest paraprotein number is which I’ll share as soon as I have it but the doctor reckons that I’ll need at least 2 more sessions which means 2 more months of time away from home and being on the drugs 24/5. Worst of all I have to tell Max and Seb that I won’t be a home again which I know after the last session really hurt them. Not looking forward to that conversation.
Lesson 1 for me is you cannot get too hopeful. But, by the same token you clearly can’t go too far the other way as that would be a dark place to spend too much time in. In the spirit of honesty, I would say I have been there on too many occasions recently.
So along with the extra chemo, the second piece of news is that the fractures in my back require an operation. Its all a bit Bob the builder because they need to inject cement into 2 of my vertebrae but to do this, the chemo will have to be stopped. Ultimately this delays everything and although the end goal remains the same, getting there will now take longer; timeframe currently unknown but it looks like Santa will have to make an extra stop at the hospital this year!
This news in particular has knocked my head about.
Lesson 2 is to be prepared for the plan to change at any time and accept the change quickly. It can’t be fought, it can’t be challenged. But it doesn’t make it any easier to absorb. For me, this specifically has made the last 2 weeks both painful and draining.
Thankfully an impromptu visit from Australia by my brother Tim, which I was not expecting, broke up the cycle of negativity and has really made the last week a positive experience. I don’t think even he appreciates how the timing of his trip tied in with the recent mental challenges.
It’s not in my nature to try and be numb to the fun of life but right now that feels like the only way to approach the coming months. Chemo, back surgery, stem cell therapy, x-rays, CT scans; its a constant railroad of hospital time I simply have to go through and having no choice but to accept this is tough. Like I’ve said before, this is a path that you cannot leave and have no choice but to put your body and faith in the experts who are in place to support and heal you.
I am re-focusing and just not looking beyond tomorrow; take each day as it comes and forget looking too far ahead. I have wasted far too much time dwelling on my life pre-myeloma and what I want my life to look like once all this is done.
I feel for anyone going through this who do not have family and friends that care as I do. I know I am not alone in this and that makes a huge difference. I have read and re-read so many of your messages when times have been particularly tough. I think that is why this blog has been such a positive outlet for me as I don’t tend to talk about what’s going on inside yet I can communicate my message and you guys seem to get it.
So I go in on Monday 16th for round 5 of chemo and expect to find out both paraprotein number and when the back surgery will take place in that week.
I’m hoping for nothing but that doesn’t mean other people can’t!