ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I'm 43 years old, (was 39 when life went somewhat awry) with 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.

Carry on regardless

Have you ever taken the time to read through the small-print document that accompanies all medications?

Specifically, the seemingly alarmist list of side-effects?

Take the medical staple of all homes as an example.

Alongside a loaf of bread and a pint of milk, a ready-to-hand packet of Aspirin adorns the shelves of pretty much every first aid cupboard across the land.

From the shared student house where it is the go to breakfast of staving off a hangover, to the family residence of 2.4 children where parent(s) simply strive to get to the end of the day having sported a headache since the breakfast showdown and accompanying shouting match.

Did you know for example, that an unlikely, but possible, side effect of Aspirin is “bleeding on the brain which may cause a severe headache or stroke?”

Yes, it is unlikely but crikey, we neck these pills more enthusiastically than a teenager dishes out love bites.

Until recently, I have never taken the time to read any of these leaflets. Like most of us, I assume that the risks are low and the benefits must clearly outweigh them otherwise surely, the pharmacy would not sell me something that is going to do me more harm than good.

That said, it should come as no surprise that the paperwork I have read from front to back, all accompany the chemo I have taken.

Here for example, next to the Aspirin leaflet, is the encyclopedia that accompanies (it is 2 sided aswell) Revlimid, the drug I have been on for the last 3 years

A great bedtime read

You don’t need to stretch your imaginations too far to have a guess at some of the very common, common, uncommon and unknown (these are the official document headings) side effects.

The detail and depth of side effects are not important here, apart from the 1 that has always stood out as both counter intuitive in terms of taking a drug, but also by-the-by in that I have to take it regardless.

Chemotherapy can cause cancer.

So, I was not overly taken aback this month when told I had to undergo some tests to see if anything untoward was going on peripheral to the myeloma.

I feel very lucky that the smart bods in white jackets have designed all manner of chemicals that can manage my situation. Especially Revlimid, because it is a pill which means I am not stuck on a hospital bed for days on end being pumped full of stuff that really does knock you for six while doing its worst to the blood cancer as well as whatever else it comes into contact with.

But eating chemo was always going to give my gut a kicking and cumulatively, that is what I have become more aware of recently.

Cue more blood tests and samples taken I do not wish anyone to dwell upon.

Then more waiting as the system grinds its way towards results day.

The good news is that the only cancer I have to focus on is the myeloma.

I had no motivation whatsoever to start the “10’000 Stool Samples” campaign. (and I am sure you all echo that sentiment as my go to audience)

The side effects of my ongoing diet of chemotherapy are clearly there; but, I have no choice but to keep popping the pills, thus keeping one issue in check whilst creating consequential knock on effects elsewhere.

For now, all totally manageable but it’s another dynamic added to an already fragile landscape. I’ve already gone through the mental gymnastics of coming to terms with this new set of challenges and being honest, have once again, asked the empty questions “really, what else?” and “why me?!”

But, once again, I find myself amazed at how readily you can come to terms with a situation and carry on regardless. It’s a very useful trait of our brains that we can find a way to let go and move forwards.

I suspect psychologists would point to the cause vs effect / risk vs reward dynamic; in that bursts of stress can be useful (fight or flight). But who really wants to be on edge waiting for a tiger to pounce when the chances of that happening are slim to none.

Same with the drugs. The odds of your head exploding after taking an Aspirin are pretty much zero so the risk is worth the reward.

That my chemo has done some damage is an unfortunate side effect but as yet, not life threatening so worth taking.

Keep calm and carry on.

Then again, when the likely impact of not taking chemo is a trip to meet some chap called Graeme Reaper, it is also quite possible that nothing is likely to overly fluster me ever again!

(apart from scorpions. I woke up in a tent with one at the end of my sleeping bag many years ago in Australia. I hate scorpions)


7.1

The paraprotein continues to slowly meander north but from one month to the next, in an irregular manner. Sometimes jumping up (8.1 last month) then sometimes dropping (7.1 this month). The trend is clear but I still see it as in check in the grand scheme.

On the whole, the situation continues to be positive and under control.

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4 Comments

  1. Jane Aylott 18th September 2021

    Good to read your blog , insightful and so true, as usual. So glad the chemo is keeping the paraprotein levels down from those terrible high levels you had earlier in your illness. So important to have a positive mindset (easier said than done) to deal with the incurable disease.
    My southern born son says I’m a tough northern bird when dealing with the needles and scans and treatments and side effects ! You have that tough northern grit too! Just got to do it don’t we.
    Take care

  2. Zihni Acar Yazici 22nd September 2021

    The fight has to go on!

  3. Lucy Whelan 2nd November 2021

    Dear Pete,
    Since the start of your illness I’ve read your posts avidly. You write with such honesty and offer such coherent & thoughtful reflections. I hope that your relentless work to get more donors will one day soon benefit you, as well as the other lives your work has saved.
    When I started reading your blog I couldn’t have anticipated that I’d be fighting my own cancer battle. This bleeding disease is vicious & cruel and casts a shadow that often feels impossible to escape from.
    Anyway, keep blogging, keep taking the pills because, as you say, the alternatives aren’t worth thinking about, right? You’re tougher than you know but oh how I wish we didn’t need to know those hidden wells of resilience; those impossible depths of inner strength that this journey demands.
    Take very good care of yourself. You’re in my thoughts.
    Lucy Whelan (nee Wheater- Of Eskdaleside!)

  4. Tony Nugent 28th November 2021

    First real chance I’ve had to catch up on your blog. So happy and delighted to know you are managing things in a very positive way.

    I know your search for a donor continues to bare no fruit, but I am confident for you that soon you will get the very good news you most definitely need and deserve.

    Please keep going strong and remaining positive.

    Tony

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