ON YOUR MARKS, GET SET…THE MYELOMA CHALLENGE

I'm 42 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.

“Where everybody knows your name…”

It should come as no surprise to hear that the 4 week break from chemo and trips to the hospital was punctuated by, (go on, have a guess) a stay in the hospital. This time Lady Luck turned her back on me (again) and I picked up a chest infection. There is a curve ball being thrown into the mix at every step of this rather convoluted journey but I’m getting to the stage now where it is no longer a surprise; I’m simply resigned to what feels like a never ending set of challenges to overcome.

On the plus side, I now can’t walk through the corridors of the Countess without someone saying hello; which is all well and good but I’d rather get that reaction in my local boozer. Gives you an insight into where I have been hanging out of late!

Its been 6 months since treatment started which is nuts. Looking for positives, if the stem cell treatment works then we are well over half way through the process now. As I am constantly reminded, you cannot give any credence to other peoples experiences of myeloma because each case is unique; what works for 1 person may not work for another. But getting to a stage where stem cell can be lined up was always a key marker of progress so regardless of how well it may or may not turn out, I look at all we have been through as water now under the bridge which has prepared me for what I hope will be the last leg (for now) of  this cycle. Certainly when it rears its ugly head again, at least I will know what is coming and be better prepared to deal with it.

This disease, as I imagine so many others do, takes so much from you. Your time, energy, freedom to do what you want. (sounds like having kids!) Over such a long period of time, it chips away and often you don’t notice how much of a change has taken place until you find yourself reflecting on what has happened at 2 in the morning on a hospital bed.

I look terrible and have adjusted to constantly feeling under the weather.

I’ve lost 1.5 stone since this began having done no exercise in half a year. Hair loss, which shouldn’t be a big deal, is actually quite emasculating. Coupled with the deterioration of physique, these 2 changes alone visually hit home what has happened and remind me every day of where I was and where I am now. At least  I know that with a bit of work in 2018, I can do something about these.

And I cannot make decisions for toffee. My brain has clearly been underused for too long and bombarded with drugs because I just don’t have the focus or energy required to make an educated consideration or plan. In my head I want to set out some grand ideas for 2018 but when I try to tie down my ideas, I quickly tire of the choices to be made and lose focus. Not like me at all and again, something I need to turn around if I am to avoid becoming a daytime tv junkie whose sole purpose is to watch soap operas and drink tea.

I’d really like to feel normal again. Not have a cough and cold that hangs around for weeks, not tired and not tied to visits to the hospital every week. I know it will come in time but half a year feeling rough is more than enough thanks.

**NEWSFLASH**

I was about to wrap this up but literally 10 minutes ago, I was hit with a coughing fit and the next thing I know I’m lying on the floor with a sore head. Seems I passed out and fell off the bed! Timely example of how ridiculous life has become; I’ve never passed out before. Cue nurses running lots of tests etc…

**

So, next destination on my whistle stop tour of NHS facilities is the Royal in Liverpool for the back op on the 17th. Fingers crossed that goes well and another milestone can be chalked off the list.

I am trying not to wish days away for obvious reasons but I’ll be glad to see the back of 2017.

2018 has to be a better year.

 

 

 

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7 Comments

  1. Liz 8th November 2017

    Well one thing you have maintained through all of this awful time is your sense of humour! Good luck for the 17th – we will all be thinking of you!

  2. Andreas Dåvøy 8th November 2017

    I am looking forward to seeing you and your family turning your back on 2017 – and to seeing you all in a much better 2018 – it’s been way too long my good friend! Hang in (!) there Pete!

  3. SHE & JIM 8th November 2017

    Hi Pete,
    Well, complete respect for your open, honest, ‘no-bullshit’ update and of course there are going to be peaks and troughs, tough times and good, but your longer term vision is still very positive and ‘cheers’ to you for that. Let’s just say, we are very proud to have you as our ‘son-in-law’…….
    Hope all goes smoothly for the 17th Nov…..
    The Smarties

  4. Glyn and Linda 8th November 2017

    Glyn and Linda
    17th. That’s the next milestone. It’s a bit like a trip on the M6. Stop start, road works and other delays. Despite all the hod ups the road goes on, slowly sure, but forward. Your sense of humour is brilliant and the observations you make give insight for us all. Thinking of you 17th. Saw Ma and Pa on Friday in York.

  5. Rachel Morris 9th November 2017

    Hi Pete,
    Keir and I have been reading your blog and wanted to say that we’re cheering you on for a positive outcome to the operation and stem cell treatment and a more normal and positive 2018 for you, Jenn, Max and Seb. You’ve shown so much resilience and honesty about what you’ve been going through, and we’re in awe of your humour throughout. We’ll be thinking of you all on the 17th.
    Rachel & Keir x

  6. Brenda Shipton 10th November 2017

    Hi Pete,
    Just read your blog, just wanted too say that with your positivity, great hospital care, the love of all your friends and family this year which has been for most part the horrobolist, as the Queen once put it, this will soon be over. Here’s too, much better times in the not too distant future. Frank and I will be thinking of you and praying for you on the 17th. Love from us both.

  7. Darren 21st November 2017

    I’m so sorry you are having to go through this awful illess Pete. I am humbled by your honesty and transparency through this time. The way you are facing this period of your life head-on is inspiring to so many. Emma and I send you and the family our love and I am always here on the ‘old blower’ if you ever want to talk. I can’t tell you how much we all want to see these treatments help you get back on track my friend. No trivial phrases or clichés – we just love ya buddy and can’t imagine what it takes to get through the many treatments you have been undergoing over the last 6 months; but I want you to know how proud we are of you (and Jen) and that you are all in our thoughts & prayers. Daz and Emma.

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