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.

Me and my shadow

5 days attached to a drip which was finally unplugged at 0300 this morning.

This week has been the most challenging I can recall.

But, I was finally allowed to leave the confines of the hospital proper today and get home for the afternoon. Mum and Dad were there with Jenn and the boys and although I was shattered for most of the day, it was such a release to be outside and away from the restrictions of treatment.

Able to have a shower without having to be unplugged from the drip, not being exposed to alarms pinging at all hours. Being free of the smell of alcohol gels, cleaning fluids and hospital food. Being cooped up for even a week is claustrophobic so I do not look forward to the longer stays that are likely to manifest in future.

The reality of this situation has hit home, not because I have only just realised what I have, but because of the ramifications of having it.

It is strange to be told that you have cancer but not feel much different. Not that I had dwelled upon it previously but I assumed that to be told you were ill, as with having a cold or flu, you would feel ill. Until I started the chemo, I felt fine. Quite abstract being told you are unwell based on stats and images the doctors, who you have to trust at the mention of any serious illness, throw at you.

Control, or being thrust in a position of having none, is also a wake up call. My work has always centred around being responsible, making decisions. That fundamental is stripped away in one conversation; you’re life ceases to just be your own. But there is no choice and I guess living in the UK I am grateful that I can trust the NHS to do what is best.

I have been hooked up to 2, 24 hour drips which means I have had a buzzing, clicking shadow to drag around all week. As someone who cannot abide unnecessary baggage or being limited in any way, this has been a nightmare. Coupled with being stuck in hospital, I won’t pretend that I have not struggled to cope.

Taste has gone out of the window too so food is just a chore.

Even sleeping is a double edged sword. On the one hand I am using it to pass the time but when I’m dreaming, I don’t have an illness. Usually, you can wake up from a bad dream and be safe in the knowledge that it was all in your head; not so when you wake up and are still in hospital and have this ducking disease.

Ok, enough self pity. I’m just knackered.

On a positive note, I only have 2 injections next week then am chemo free for 2 weeks! Then its a bit of a waiting game to see if the paraprotein numbers have come down in response to this weeks frivolities. In an ideal world I would not need another 5 day stint of incarceration but I have a feeling that I’ll be back in October for another session.

Having re-read this it’s a bit of a whinge fest so thanks for persevering if you’ve got this far!! Relief at getting through this stage of treatment is my overriding feeling alongside the fatigue which is nagging away at my patience. As stated above, reality has bitten but the positive messages and visits have made a trying week bearable. (If I have not responded to anyone please accept my apologies; I will when my head is clear!)

I just hope it’s working because although I don’t really know what normality looks like on the other side of successful treatment, I damn well want to find out sooner rather than later!

 

 

 

 

 

 

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8 Comments

  1. THE SMARTIES 28th August 2017

    Hi Pete, can understand the relief of being ‘unhooked’ and especially being able to leave hospital even for a few hours – take some independence back. Hospitals are never the place you want to spend time but it is a means to recovery and the thought of enjoying family life and your food again..!! As always, enjoying your blog and keep your spirits up. Love and best wishes, She & Jim

  2. Brenda Shipton 28th August 2017

    It’s normal under the circumstances too have a whinge Peter. Just look at all this as a getting better process and although you will be (nackered) sorry for the use of such a horrid term, i’m sure that all of this WILL be worth it when you turn the next corner too a slow but worthwhile recovery. Take care and keep smiling if you can. xx

  3. Connor wilkinson 29th August 2017

    Hi mate, you are an inspiration not just to us reading and wishing you all the best from afar but your boys will be looking at you and know what bravery tenacity and courage looks like first hand. Not to mention Jen (hi Jenn) your mum and dad and Timbob.

    Sending loads of positive vibes – btw it doesn’t come across as whinging even if it did you are allowed!!

    Kick ass dude!!

    Connor

  4. Zihni Acar Yazıcı 30th August 2017

    Our thoughts a are with you as always. Hoping to hear measurable good progress soon. Enjoy your temp leave from the hospital.

  5. Cliff 30th August 2017

    Stay strong Peter. It sounds awful, but to a good end.

  6. Christine 31st August 2017

    I have read your blog now several times and can’t imagine how it feels to be on the receiving end of this awful treatment ! As long as it works though – and I’m sure it will -t will all be worth it and just a dreadful memory…. I prefer lovely memories and as I said to you last week can’t wait for you and your lovely family to be making more wonderful memories! Stay strong and get on beating this b—-y illness! Love Christine and Tim xx

  7. Tara 1st September 2017

    Definitely not whinging honey! Stay strong and sending positive thoughts to you all. Keep writing, tell your story, say anything that helps and we will keep reading and supporting you on this journey x

  8. Dave 12th September 2017

    You whinge all you want Pete, you’ve earned it.
    It’s great to see the levels going in the correct direction.
    Enjoy your latest spell with the family and give your mum and dad a cuddle from us,
    lots of love,
    San & Dave.

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