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.

Mind the Gap

I’ve lost 2ish weeks.

No recollection of events… whatsoever.

Clearly I either had conversations with people which they could only recount later because I spoke to them or there is photographic evidence, but I do not remember.

And I’m not talking insignificant events that I could pass off through fatigue or the treatments.

I apparently attended my friend Fi’s birthday one evening after my mates got me a pass out of hospital and they dropped me off afterwards too. In my head nothing.

Visits from many of you (and I do feel guilty saying this) aren’t even an echo of a memory during this time.

Crazy and concerning in equal measure.

When I look back at dates and what was going on, it all ties back to when I was on a truck load of painkillers for my back. For a few weeks, I was on a heady cocktail of at least 6 different painkillers a day, including, morphine and diazepam, which may have got the pain under control, but clearly sent my head onto the set of Trainspotting. What I find most disturbing is that I had no idea of the change in my personality or response to the mix of drugs on top of the chemo. I can now see how people fall into drug addiction without even acknowledging the slide.

As a few of you have pointed out, post my clinically induced drugs bender, it was clear I was on something but it only makes sense to me having also been through the inevitable downer that would follow such a chem-fest.

I asked the doctors to take me off all painkillers after my last round of chemo when I realised how many I had been taking.

What goes up must come down and damn me, I hit a low last week.

Before I go on, check out the list of symptoms of going cold turkey; I had them all:

  • Anxiety
  • Irritability
  • Dysphoria (feeling down or depressed)
  • Cravings
  • Insomnia
  • Nausea
  • Abdominal pain
  • Sweating
  • Chills

I am not a weeper but I was finding my self breaking down without warning or control. Feeling as close to depressed as I can appreciate having not typically been someone prone to negative feelings. Being overwhelmed by the thought of facing the day ahead and getting more and more fatigued as sleep wouldn’t come. Since the chemo started, it was the first time I felt completely overwhelmed by what had happened and what lay ahead.

I’m not blaming the painkillers for every negative emotion; I know that mixed into the comedown are genuine feelings of sadness, anger and frustration at the situation. But I was a different person, someone I did not recognise and the extreme nature of my reaction was definitely influenced by the withdrawal.

Which brings me to today. I am lucid. (as much as I usually am!)  I can hold a conversation and my head feels clear. I think (hope) I’m through the worst of it. Horrible.

Next stops are my back operation in 3 weeks, paraprotein update in 2 and half term next week when hopefully, we’ll get away as a family for a couple of days.

What I have learned from the above and take into the next phase of this journey, is I now appreciate that the battle against myeloma is being fought on 2 fronts.

The physical fight is in the hands of the medics who are making decisions on medicines to be administered; my job is to trust in them and deal with the side effects. Quite a passive role to have to take but that’s just the reality of being a patient.

More in my control is the mental battle that up until now, I was taking a pasting in. I have to find a way to live with the facts of the disease and not only know that I have to maintain a positive frame of mind, but believe and feel it too. This will take time but having been through the lows of the last few days, I feel a bit better prepared for this particular challenge.

I break every day into 2 halves of activity to help get me through 24 hours; right now, I’m ready for a good nights sleep.

 

 

 

 

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5 Comments

  1. Brenda Shipton 27th October 2017

    What a journey you are on Pete, sounds like a ‘Big Dipper’ in a spooky fairground. At the end of each piece of news though we still have the brave and lovely Pete shining through. Keep sane and above all keep going you are in good hands with your medical team and above all your loving family. Love too you and them. xx

  2. Dave Richardson 27th October 2017

    Hi Peter,

    Rather weakly I could not find words to answer your last writings, but this time I will try to be stronger.
    Sometimes,”no recollection of events” is an excellent way of relaxation and healing for the body and so not really a bad thing and so any feelings of guilt on your part should be quickly dispelled from your mind as waste.
    Again as I read your latest blog I am struck by your strength, honesty and humour; you are a remarkable young man, and remember it is not unmanly to have a weep as and when required, so do it as often as you like, it works I do it all the time !!! San loves a man that is not afraid to show his emotions !!
    We had a night out with mum and dad recently and enjoyed their company as usual, and we will be repeating this early in November when the gang go to see Jules Holland at the York Barbican.
    It’s always a brilliant night and hopefully will help ease mum and dad’s spirits for a while.
    Our thoughts are always with you Pete,
    Lots of love ,
    San & Dave.

  3. SHE & JIM 27th October 2017

    Hi Pete,
    Inevitable physiology changes with the amount of chemo and pain killers being pumped into your system. You hear about the problems coming off some of these drugs – only reinforced by your comments……
    However, it sounds as though you have recognised this and ‘cold-turkey’ beaten….
    Be great to get out of your current régime with a bit of a holiday if you can.
    Great post again and we are looking forward to further updates.
    Love, The Smarties

  4. Enda 27th October 2017

    Such strength – a hugely good sign for the big ol’ battle ahead.

  5. Maggie 27th October 2017

    Keep strong. Have a brilliant half term with the family.love and healing, as always xxx
    Maggie, Michelle and Nic, and Rosie and Rick xxxx

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