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.

I was never going to do it the easy way

If I’d tried tapping away my thoughts 2 weeks ago the following would most likely have hit the page;

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The last few weeks have been challenging, more so than I’ve personally felt since diagnosis; certainly it has become more of a mental battle rather than just physical.

A few pieces of news have contributed to a change in what I thought the plan for treatment were, so here’s a brief update.

I was really hopeful that after the last blast of chemo I would be ready for the stem cell therapy. I’ll find out on Monday 16th October what the latest paraprotein number is which I’ll share as soon as I have it but the doctor reckons that I’ll need at least 2 more sessions which means 2 more months of time away from home and being on the drugs 24/5. Worst of all I have to tell Max and Seb that I won’t be a home again which I know after the last session really hurt them. Not looking forward to that conversation.

Lesson 1 for me is you cannot get too hopeful. But, by the same token you clearly can’t go too far the other way as that would be a dark place to spend too much time in. In the spirit of honesty, I would say I have been there on too many occasions recently.

So along with the extra chemo, the second piece of news is that the fractures in my back require an operation. Its all a bit Bob the builder because they need to inject cement into 2 of my vertebrae but to do this, the chemo will have to be stopped. Ultimately this delays everything and although the end goal remains the same, getting there will now take longer; timeframe currently unknown but it looks like Santa will have to make an extra stop at the hospital this year!

This news in particular has knocked my head about.

Lesson 2 is to be prepared for the plan to change at any time and accept the change quickly. It can’t be fought, it can’t be challenged.  But it doesn’t make it any easier to absorb. For me, this specifically has made the last 2 weeks both painful and draining.

Thankfully an impromptu visit from Australia by my brother Tim, which I was not expecting, broke up the cycle of negativity and has really made the last week a positive experience. I don’t think even he appreciates how the timing of his trip tied in with the recent mental challenges.

It’s not in my nature to try and be numb to the fun of life but right now that feels like the only way to approach the coming months. Chemo, back surgery, stem cell therapy, x-rays, CT scans; its a constant railroad of hospital time I simply have to go through and having no choice but to accept this is tough. Like I’ve said before, this is a path that you cannot leave and have no choice but to put your body and faith in the experts who are in place to support and heal you.

I am re-focusing and just not looking beyond tomorrow; take each day as it comes and forget looking too far ahead. I have wasted far too much time dwelling on my life pre-myeloma and what I want my life to look like once all this is done.

I feel for anyone going through this who do not have family and friends that care as I do. I know I am not alone in this and that makes a huge difference. I have read and re-read so many of your messages when times have been particularly tough. I think that is why this blog has been such a  positive outlet for me as I don’t tend to talk about what’s going on inside yet I can communicate my message and you guys seem to get it.

So I go in on Monday 16th for round 5 of chemo and expect to find out both paraprotein number and when the back surgery will take place in that week.

I’m hoping for nothing but that doesn’t mean other people can’t!

 

 

 

 

 

 

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5 Comments

  1. Brenda Shipton 14th October 2017

    Hi Pete, lovely too hear from you after your last 2 grueling weeks. keep strong you have two lovely little boys to be strong for. Max & Seb came too see us today after they had been on the beach at Robin-Hoods-Bay with your Mum & Dad. They had loaned buckets & spades to take down as they were looking for crabs. Max said they had seen a jelly fish and some other little sea critters. They are well balanced little boys Pete and believe you me they are a credit too you and Jen. Keep up the good work and if it’s at all possible Keep Smiling. We are all here for you every step of the way. Take care. Love too you and all your family. xx

  2. SHEILA & JIM 15th October 2017

    Hi Pete,
    Seems like you are walking on cobbles at the moment – you have to make sure you have thick soles….
    Keep the ‘blog’ going as it’s a great way to receive your updates.
    Will catch up with you, Jenn and boys later today.
    love from The Smarties

  3. Mike Day 15th October 2017

    Hi Pete: once again you are going into chemotherapy which you know all about by now. From my own experience I know that there are no guarantees, no promises and no certainty that it will go well. All that any of us can do is to have faith and trust in the people that have the experience. You obviously realise that and although it is difficult your faith and trust in them is imperative especially in relation to the op. We along with you feel completely powerless to help, but, we are thinking of you and praying all goes well.

    I told Jen if she needs owt to let us know.

    So I was going to say you just concentrate on getting right. For once and for you I know it’s tough but do as you’re told. Love from us both.
    Mike and Sue Day

  4. Christine Landers 15th October 2017

    Pete, I can’t imagine what you are going through all of you, but you are absolutely right about having to put your body and faith in the experts’ hands… it’s what I personally do every time I fly… I can’t admit to enjoying flying but I love going places so every time I’m at an airport I instill in my mind that the pilots know what they are doing , and it’s the same with the medics isn’t it? They are so very clever these days, they really are! They know what they are doing with you and I am certain they are working out the correct way to heal you of all what is nasty inside you.. Hoping this next bout of treatment goes well and that the stem cell transplant can be soon! Fingers crossed for favourable paraprotein levels!!! With much love to you all, Christine and Tim xx

  5. Seamus Maloney 16th October 2017

    Pete,

    A big hello from us all down in Surrey.

    Keep at this and draw strength from the support and love of all those around.

    Newcastle are doing their bit for you, top half of the table, earning some difficult points away from Home.

    Looking forward to the next update.

    Seamus and Mary.

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