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.

Incapacitated by…hiccups

Breakfast

Breakfast

Body and Limitations

The latest inspirational quote from the Doc is as follows:

there is not a bone in your body not impacted by the myeloma.

Comforting…

So it transpires that this debacle of a situation had been bubbling along unbeknownst to me for a while. No one is 100% sure exactly when, but it likely started mid last year. To draw on the usual cliche, hindsight is a wonderful thing, but in isolation, the symptoms did not stand out as anything extra ordinary. And in fairness, I would not have done anything differently anyway. You can’t live your life as a hypochondriac.

So, where are we?

I am into round 2 of chemo and so far, have only experienced very mild side effects. More tired than usual and the occasional head ache but nothing like many people suffer with so I have to be thankful for that. I’ve certainly inflicted more painful hangovers upon myself in the past. I know it is early days and the cumulative nature of the drugs will mean I  feel progressively worse as time ticks along but for now, I can still function.

That said… hiccups. I kid you not, it was the most excruciating pain I have felt in years! And I include being electrocuted at the end of Tough Mudder in that. I’d love to tell you that I was left reeling on the floor, unable to do nothing more than whine like a child, because I’d just wrestled a bear or injured myself saving a cat from a tall tree. But no, my body decided to show in graphic detail how much of a beating it has been taking of late.

Round 1 felt like I’d expect a punch from Mike Tyson might feel; every 30 seconds for 40 minutes! My ribs and back were in agony. Couldn’t breathe properly; poor Max and Seb were a touch concerned so I took myself off to bed.

Round 2 (2 hours later! Thought I was done!) lasted 30 minutes and felt like Mike had invited Lennox Lewis to the party. Clearly my upper body is not what it was prior to the myeloma but the pace of deterioration is staggering.

I’ve always maintained a healthy physique so finding myself in a position where I can’t change the gears in a car (Whats that I hear you all shout? Go and buy a new car with an automatic gearbox?! A Mustang you say? Great idea!) is a sizeable issue to face up to. I will take feeling crap because of the drugs but having physical restrictions is a big deal.

My approach to a challenge has always been to focus on what is in my control and put steps in place to get me to the finish line. Learn to fly? Save up and take the lessons. Swim 2 miles? Get in the pool and keep building the yards. I can’t do that here and I look at my body in a whole different light because of it.

I am still in here, same brain, same person, same aspirations but the shell that has kept it all together in the past is now compromised.

I’m 39, always been able to train to achieve my goals and yet I am not allowed to pick my kids up?! (or the hoover, or the washing…just repeating what the doctor said Jenn)

The 2 things that bother me most are that this situation has forced me to question how much time I have with my family and friends and what I may not be able to do in future as a result of the illness.

I got out of bed this morning and literally had to roll myself off the mattress onto my knees and onto the floor, such was the pain in my back and shoulders. I’m about as much use as a chocolate fireguard.

On the plus side, I’d be a great poster boy for the health and safety brigade because my appreciation of a good straight back and sound posture are all that keep me from collapsing into a heap whenever I get up off the sofa.

I guess the good news is that if the chemo and stem cell therapy work, I can (hopefully) look to a number of years before I have to face relapse and a return to this cycle of drugs etc. I start bisphosphonate treatment too this round so if all goes to plan, the bone degeneration will be stalled and maybe even reversed. The optimist in me sees successful outcomes on both of these fronts so life will get back as much as it can, to a normality where I can use my body to its full potential again.

The task now is to get through the next 12 months, do what the doctors tell me and stay focused and positive…and maintain my dignity by investing in a new mode of transport!

The plan

 

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11 Comments

  1. Maggie 24th July 2017

    Keep your spirit, Pete. Was so good to see you this weekend, but sorry you suffered trying to keep ‘normal’ with us…you know we’re all crazy in this family so no need to be any different! Love and healing xxx

  2. Finn Nesbitt 25th July 2017

    Trust me on this . . . you can still have fun in an automatic. I know it seems far fetched but they really have made big leaps forward with them. X

    • Pete 2nd August 2017 — Post author

      I’ll find out tomorrow mate. Pick up the beast in the morning. I’ll bring it to your grand opening!

  3. Carole 27th July 2017

    Go on, get that Mustang! Keep up the spirits and drugs. Big hugs xx

    • Pete 2nd August 2017 — Post author

      Cheers Carole. Pick up the car tomorrow so next time I see you and Bob, i’ll be sporting a Stetson and smoking a cigar too!

  4. Alun Davies 27th July 2017

    Your attitude and approach towards the whole situation is truly inspirational, mate. Keep it up and go get that Mustang!

    • Pete 2nd August 2017 — Post author

      Cheers fella. Onwards and upwards. Catch you guys in Leeds in the near future hopefully.

  5. Natalie 27th July 2017

    Wow!! What an inspiring guy you really are! Amazing! So much respect for you Pete! Keep doing what you’re doing coz you’re doing everything right! So many people are behind you because you’re an absolute rock of a man! You’ve got this Pete!!! Keep it up! X

  6. Ellie 28th July 2017

    Can’t wait to see the mustang!!

  7. Jason 30th July 2017

    Stay strong Pete! I know you can make it through these 12 months and get into remission. After a number of years, medicine will progress and available drugs will be more impactful and better. And automatics aren’t all that bad – I’m sounding very American now…love to you Jenn and the boys

    • Pete 2nd August 2017 — Post author

      Cheers mate. I’ve no doubt the doctors will find a path that will get it under control. Just takes a bit of time. I’m picking up my piece of American history tomorrow so looking forward to hitting the road in a Stetson and sporting a good ol’ fashioned moustache. Just call me Clint!

      Hope you and the family are well.

      Cheers

      Pete

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