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a drop in the ocean..? perhaps. but worth celebrating nonethless

Updated: Oct 26, 2023

23 July 2020

What a difference a month makes

Down to 5.2 from 5.8!!

I had been planning this blog in my head for about a week.

Having not written anything for a couple of months, I had a list of things I was going to cover and knew pretty much what I was going to open and close the blog with.

Then, I got a phone call today which blew the whole piece out of the water and forced me to don my thinking cap once again.

Not that I should be surprised at all because it is not the first time my paraprotein (PP) number has not followed a pattern.

And thank fudge for that!

The last 4 months have seen a sedentary but consistently steady increase in number: 4.6 - 5.4 - 5.6 - 5.8

I would have had the keys to my car banged on the table predicting an increase this month but no... a significant drop to 5.2!

Cue a removal of the thinking cap for a moment to give the old head a scratch and think back to what, if anything, may have influenced this.

I am quite sure that I contributed nothing to this drop through my own actions but the scientist (control freak?) in my mind is always on the look out for a pattern or variable.

However, there is as always, a counterbalance to this glimmer of positivity that feathers the brakes somewhat and stops me from getting carried away.

The aches continue to niggle away and I am aware of them but not to an extent where I am laid up.

My bloods continue to return, even ignoring the paraprotein figure, less-than perfect results; with both neutrophils (infection fighting white blood cells) and platelets (help your blood clot) lower than the professionals would like.

This could just be down to the chemo and a slow(ing) rate of recovery during my week off the meds (it's a 4 week cycle of 3 weeks on and 1 week off) but no-one is 100% sure what the underlying cause is.

Accordingly, I get to reacquaint myself with weekly self-injections of G-CSF; to stimulate my white blood cell growth, next month and into the foreseeable future.

I have asked them to provide the smallest needle possible as to this day, I bloody hate injections. Especially when I'm doing it to myself.

I'd be a rubbish drug addict.

And to keep things really interesting, my consultant threw in a bit of a curve ball last time we spoke regarding likely next steps.

The medical team supporting me are phenomenal. Always honest and direct, which is the way I like things to be.

But, even I was taken aback this time.

In my head, I always felt that another autologous (my own) stem cell transplant would be the likely next plan of attack.

I knew that it would not be expected to hold remission as long as the first because in general, they are less effective, to the tune of about 60%. That mine had lasted 2 years before the cancer started to remobilise was beyond all our initial expectations; although that is of little comfort when considering the broader vista of this story.

But, or so I thought, at least I might eke out another year or so and buy a bit more time for science to uncover the holy grail of a cure.

Well, I assumed incorrectly.

My consultant threw CAR-T into this round of doctor-patient-chit-chat which was unexpected.

As was the potential proposal of putting me into a trial in March 2021. I have said previously that I viewed CAR-T as last chance saloon territory. This assertion was not quite as accurate as I first thought as a further round of stem cell transplantation can take place if CAR-T fails.

But, if my thinking was not quite in-the-game, it was still in the ball park.

I had also started projecting the likely date my PP number hit double-digits and at a rate of 0.2 per month, I was looking at March 2022 (I'm a little gutted I can't share my new graph which superimposes a cool looking red line on top of my usual PP tracker. It's a bit like the run rate graph you see in Cricket games for those of you who appreciate a bit of leather on willow)

But, as I said at the beginning of this post, cancer just does not follow a pattern so maintaining a steady state will always be a bit of an ask.

The decision to pull the proverbial trigger clearly will not be made right now. Despite the red flags waving in my dodgy blood results, they are just that at the moment.

Warnings of things to come.

And as long as I am able to function and the side effects of the cancer are manageable, there is no reason to think that any sizeable change in treatment protocol can't be pushed back until such time as the PP is more out of control and the ramifications of the cancer are more apparent.

It is a fine balance between holding out as long as possible and not allowing peripheral ailments, like broken bones or kidney damage, to manifest.

But, if March 2021 is on the cards, it is much sooner than I thought and means once again, plans for next year have to be put on hold.

Well, as if Corona virus hadn't put them on hold already.

So what to do?

Well, taking 10'000 Donors fully digital has gone really well so far; so continuing to engage with people online and spreading the word clearly has to be a primary goal. I am laser focussed on hitting 100'000 by the time the lads and lasses in white coats come to drag me back, (I will be kicking and screaming) into a hermetically sealed room to endure more intensive therapies and day time television.

But I guess even more important than chasing stem cell donors, is making the most of time with those people I really should appreciate a lot more. Who have put up with my antics for years and never wavered in their support of me and my recent trials.

So Kev and all the staff at Tillys cafe in Bunbury, I'll be in a lot more often now lockdown is lifting to express my gratitude...

I'm kidding, chill your boots Jenn..!

Despite being locked down together for the last 40'000 months, Jenn, Max and Seb have been and always will be, my main focus and motivation to keep going.

As I am sure everyone reading this can attest to, being stuck together however much you care about people, is challenging and demands more patience than I can certainly muster on a daily basis. But now more than at any time I can recall, I genuinely do appreciate the importance of trying to make the most of every day. Even when slamming doors, broken lights and bikes left to rust in the garden elicits a fiery word or two from me but which, in the grand scheme, I know do not really matter.

Back in 2017 when this all kicked off; a 7 year prognosis, although short in terms of a lifetime, felt like a decent enough stretch to allow science to have a really good crack at curing this.

And there was (and is) always the hope of finding that elusive stem cell donor which could be the game changer.

8 months does not feel like a long time and once again, the silhouettes on the horizon which showcase the next chapter of this most bizarre of tales, are now in sharp, 8K focus, highlighting what is to come.

Of course, a lot can happen in a day, a week or, as I have found today, in a month. And despite having this gift of being able to see into the future a'la Mystic Meg, it is the unknown factors; the butterfly effects outside my immediate control but which seem to regularly encroach on my present and therefore future, that keep me excited, motivated and positive about what is to come.

A lot can change in 8 months.

Just look at what has been crammed into the last 3 years.

I don't say this to close this post on a fake high or leave any of you with hollow sentiments and empty words. I just believe that as long as I am "doing" something productive and useful, doors will open, opportunities will arise and people will step up. 10'000 Donors is proof enough of that and I owe it to my family to make sure those doors continue to open.

Because one day, I know, and don't ask me how because outside blind faith, I cannot better articulate the belief that through one of them will walk an opportunity that will change the course of everything associated with this story.

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