ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I’m 39 years old, no history of illness, Ironman finisher who has been diagnosed with myeloma. Did not see this coming. This blog summarises my journey from unexpected diagnosis through the treatment path. My aim is to use myeloma as a catalyst for living a better, more fulfilling life and documenting the changes I am making in all aspects of my family and work commitments.

A potted history of stuff since the transplant

15 June 2018

The last conversation close to this magnitude was probably when I was given the 7 year projection.

I could call upon a multitude of analogies to explain this latest twist, of the conversation that took place with my consultant today. But none quite articulate the tailspin of thoughts and feelings that I went through.

So I’ll try to convey how it was with my own attempt at creative writing. (cue teachers wielding red pens)

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Picture yourself in the back of a taxi.

You’re driver, sitting behind a glass safety screen, is following a road to a destination that you think know well. As you stare vacantly out of the window with life passing by as it always does, you pull up to a T-junction.

You are going to turn left. Always do, it’s the route always taken.

But then your driver turns round and you realise that instead of Dave, your steady and trusted driver, it’s Lewis Hamilton who has just taken 5 wraps of speed.

The locks to the doors click shut and and he floors it to 100mph, handbrake turns into the junction turning right and as you try to adjust to this unexpected turn of events, the new road, the extreme manoeuvre and the 5 G’s of force warping through your body,  you realise that there is absolutely nothing you can do to influence the unforeseen situation you are forced to absorb; its all out of your hands.

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So, what the hell am I babbling on about.

Well, Jenn and I went to the Christie today for what I assumed was a regulation review of my progress since discharge post transplant. As far as I was concerned all was going well; feeling fine and coping with the process.

Note here that what we have found historically is that we don’t tend to get good news in these meetings. It has either been flat at best i.e. “no progress of note, keep taking the drugs and we’ll review in a month” or “things are not improving as we had hoped, we need to try something else.”

Jenn and I even joked about this as we waited for him to arrive.

So we’re sitting there as he goes through the usual checks, half engaged in his chit chat, when he turns and looks me in the eye and with the most effective poker face I have ever come across, he says

Consultant “I wanted to tell you that I ordered a review of the global donor list”

I’m thinking “why are you telling me this as we checked it 6 weeks ago and found nothing?”

I admit that my next thought was subconscious and not complimentary as I telepathically lasered the insult of insensitive bugger his way.

(the guy is a total legend btw. Would not change him as my consultant!)

At least 10 seconds of X-factor paused-silence passed between us and I nearly told him that he needn’t have wasted his time so why bother telling me there is still no match.

Consultant “We think we have found you 2 donor matches”

FUCK.

ME.

(I of course did not vocalise this. I am a professional patient)

I literally said nothing. My head went into a spin; I am not exaggerating when I tell you I could not focus; for I’m not sure how long truth be told.

I know Jenn tensed up too as I heard her take a very sharp intake of breath; but she like me was speechless.

So much for a linear path. Shows how little can be predicted despite best efforts to find and accept a normality in this most abnormal of experiences.

Me “Are you sure? They aren’t the same donors that were found before are they?” (I did vocalise this when I finally got my head together)

Consultant “Those 2 were not 100% matches. These 2 look like they are. They were added to the register in the last 2 months.”

After 5 more minutes of discussion,  we wrapped up the meeting and walked out.

Jenn and I say nothing.

I know she is close to crying so I swiftly nip that in the bud (I don’t deal well with weeping)

Unexpected. Intense. Overwhelming.

I don’t know how to tell you of the plethora of thoughts and feelings that coursed through my mind and body. It really was an all encompassing, draining experience.

I have never given up hope but I also held and hold a realistic view of how I thought and think it would all play out.

Once again, we tear up the plan and… well, recurring lesson here is not to look ahead and to live right now with the information to hand.

All change again.

And, I have to air this;  but for gods sake, I’ve just been through the bloody transplant process. 2 weeks after and now they find the matches!

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We will know in 100 days if the autologous transplant has worked. So for now, no drugs. Just recovery.

And that would have been it had the 2 potential donors not manifested.

Now, as we speed along the road to the right, we wait not just to see if the autologous transplant has worked but also, if these donors are willing to go through with the process.

I can’t get carried away at this stage.

I am committed to maintaining a measured reaction to all news, both good and bad; for my own sanity. So although I acknowledge the significance of this development, until I know we have a committed donor on the end of the line (literally) I am not getting ahead of the curve.

And if I do get the news that we have matches that are willing to donate, there are the very real risks associated with this type of transplant. It’s a very different beast to the auto.

Host vs Graft

30% mortality risk

Serious stuff.

But you know I’ve already made up my mind on this.

The rewards far outweigh the risk in my opinion.

So, thats enough for now.

As far as I am concerned, nothing has changed until I get more details.

But I best get onto the bank first thing Monday to stall the £500’000 loan I took out against the house to buy a bunch of cars and other frivolous purchases I had planned on not paying off in the next 7 years.

Nothing is straight forwards and I would not have it any other way.

It is after all, how life is kept interesting

25 June 2018

Had a brief chat with the brains at the Christie today and got a smidge more information on the potential matches.

Note I still say “potential” as we are no closer to knowing 100% that they are prepared to donate nor if they have even been contacted yet.

Still, you’d hope that having signed up to the register in the last 2 months they would be willing and enthusiastic about going ahead

It transpires that the locations of the 2 individuals we are waiting on are…the USA and Australia and they are a 10:10 match which is as good as it gets.

I offered to fly to both locations but my generosity was scoffed at and rebuffed.

I just wonder if this pair have been influenced directly by all the efforts put in by you all? I can ask to find this out in 2 years but wouldn’t that be one hell of a twist to this story?

I’m not a man of faith per se, but there have been so many curve balls and unexplainable coincidences this last year (the Franciscan monk, the choral music being 2 of the stranger ones) that I have not made sense of, that it would not surprise me if the mythical concept of fate really was playing a hand.

Or, as my logical head says,  it truly is just a game of numbers and pure chance was swayed by plenty of advertising!

 

3 July 2018

Today is the reason why I don’t get excited until things are 100% confirmed.

The US donor was mis-matched.

Don’t ask me how; not relevant in the grand scheme, but damn disappointing.

Having 2 felt like there was a bit of wiggle room. Now it’s an all or nothing scenario.

Which leaves the Australian as the only potential match now, on which we are awaiting the machinations of bureaucracy to run their course.

Feels like being 2-nil up with 20 minutes to go then conceding a goal…

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This could drag on for weeks so I’m going to wrap this all together and get it posted. Otherwise I risk turning what was intended to be punchy bites of info into a War and Peace monologue.

Clearly we are walking a very precarious path. There is an ever present dark cloud on the horizon that is occasionally pierced by glimmers of hope.

But despite once again having my aspirations tempered, there is still hope.

In the immediate term, it’s all on the Aussie. I really hope this person isn’t a cock up (even I cannot have pissed of the Gods that much can I?!)

And long term as always, I rest my hopes on science, medicine and the very brainy bods doing their lab thing.

Please keep spreading the word.

Every new registrant is a potential life saver for so many people who are walking this particular tight rope.

There is a Hollywood ending in here for so many of us if we can convince the world play the game.

 

 

 

 

 

 

 

 

 

 

 

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3 Comments

  1. JAMES SMART 3rd July 2018

    Yet another great blog Pete……
    A match!! And the chance of others to follow…..
    Things are looking far more positive, so here’s hoping over the next 100 days or so.
    The Smarties

  2. Zihni Acar Yazıcı 4th July 2018

    “There have been so many curve balls and unexplainable coincidences this last year”, including England winning a penalty shoot out? Now, the miraculous does happen!

    Hopefully there will be more matching donors soon.
    I hope all goes well.
    Take care

  3. George Williams 19th September 2018

    Moved by what I have just read.
    If it’s fund raising I can positively help with draw tkt sales (whatever) e mail me plz.
    Can drive over to find raising organiser ,as I live nr.
    Truly sincere good wishes

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