MJN
Posted by
MJN

What if?

MJN
Posted by
MJN
08 Jan 2015

Motivation. It’s such an easy word to say but almost impossible to define, capture or gain. At least that’s how I’ve felt over the last couple of weeks, hence the lack of blogging – I’ve totally lacked the motivation to get up and write something. It feels like sailing on a stormy sea at the moment as a mixture of highs and lows have knocked me from pillar to post.

I looked forward to Christmas for weeks and Christmas day was tremendous – a proper family feast cooked up by my brother, preceded by presents and fizz and followed by board games and a determination to never again eat my own body weight in beef and roast potatoes. It was especially emotional as I sat back and realised that a year earlier I’d taken a deep breath and wondered if I’d see another Christmas. As it happened I felt fortunate and brilliant and healthy. What a difference a year makes.

What a difference 48 hours makes. The day after boxing day I found myself admitted to Jimmy’s with a bad infection. Waking up with a temperature of nearly 40 degrees and realising that the snow on the ground outside had us trapped, it was only down to the kindness of our neighbour and his 4x4 that I arrived at the hospital shivering with fever but grateful. I lay in bed in a real state for 3 days, regularly breaking out into horrendous rigors (the uncontrollable shivers caused by bacterial sepsis in the blood) until it was decided to remove my Hickman line. Like a miracle cure, the combination of no more line and powerful antibiotics saw me recover quickly and against all the odds I was discharged on New Year’s eve. I am always keen to spend the minimum time in hospital and was immensely grateful to the doctor who’d moved things along quickly. With the right people in charge, things get done.

Since then I’ve struggled to find the motivation to get up and do things. No doubt the infection knocked my physical capacity back a good way and combined with miserable weather, venturing outside has seemed less appealing so I’ve procrastinated my way out of several walks. I’m approaching the 100 day post-transplant landmark without any other complications which is supposed to be a huge cause for celebration but my mind has been dominated by “What ifs?”. What if the cancer is still there? What if it’s spread? What if the graft stops grafting? I have absolutely no reason to think that any of these things might happen but the infection made me realise the fragility of the situation and I’ve been worried about it ever since.

As usual, Alison picked me up with strong support and strong words – this negative energy can only cause damage. It’s just a fact that negativity is destructive, but how to overcome the lingering worry that anything I do now may all come to nought if things don’t work out? The turnaround started to come at Jimmy’s yesterday in a conversation with the same Doctor who’d removed my line. I asked him all of my “what if?” questions and he put a swift stop to that train of thought - there are things we can do but let’s focus on the positives; you’re getting better. Good point. Then followed a conversation with the Ward Sister from whom I’ve received a huge amount of support over the last year. I explained my worries. She listened. We discussed. She pointed out that I needed some purpose, that I needed to ask, what if it has worked? and that I needed to get off my arse and bloody well do things that make me feel good and give me a reason to look to the future. So I have done and today I feel ready for the fight again. I’ve found motivation through inspiration.

I’ve reread some of Lance Armstrong’s first autobiography because although what he did to so many people and to cycling as a sport was unforgivable, he remains one of my heroes; let’s not forget, the guy beat a cancer that had invaded every part of his body and brought him to the brink. That’s heroic enough for me. I especially connect with the chapter when he describes his first bike ride around his back yard totally, utterly exhausting him – we’re starting from the same base. Way before I got ill, I remember the anger I felt when I read that Lance had gone on to abuse a drug called EPO which causes your body to overproduce red blood cells and increases your endurance, thus allowing him to cheat his way to 7 Tour de France wins. You can imagine then that I am enjoying hugely the irony of taking weekly EPO injections to boost my red blood cell production. Think about the speculation when I win the Tour next year. It’s going to be controversial.  

I watched again the BBC Sport piece on Stiliyan Petrov, the Aston Villa footballer who has returned to playing Sunday League football after surviving acute leukaemia – his body reshaped by steroids and a total change of lifestyle but his passion for life is undiminished. He described feeling like a little kid again and I’m determined to do the same when I get back on that bike. In a recent interview he said that the support of his family and friends was key in his recovery and in his wife, he’d found the perfect one for him. I know how he feels.

I’ve even started to fill the hole left by a lack of training, signing up to try a session at the Awesome Choir of Rock in Huddersfield – who doesn’t like the idea of singing choral versions of Iron Maiden and Whitesnake? Gives me an excuse to buy some leather trousers if nothing else.

I can’t lie, I’m still worried about the results which will come at the end of the month, but I’m thinking much more about life post-transplant and after cancer – what if it has worked? Well that really isn’t a cause for worry, it’s a reason to have a party.


Thanks to Dr Will-I-Am for setting me straight. Thanks to Claire for giving me a focus. Thanks to Alison for renewing my fight and motivation. This will not beat us.

Lance Armstrong - It’s not about the bike: My journey back to life is well worth a read if you’re looking for sheer bloody minded determination and ignore the bits about winning Le Tour

http://www.bbc.co.uk/sport/0/football/30067565 will take you to the Stiliyan Petrov Story which will make you smile

If you’re interested in leather trousers, do your own research.

If you've recently been diagnosed with Hodgkin lymphoma and have yet to receive treatment you could be eligible to take part in a new clincial trial. Read more here.

Comments

Anonymous
08.01.2015

A brilliant blog Mark, and it's great to see you in print again. Keep going, we are all behind you. Ps. Jimmy's checking out the leather trouser situation as we speak ! Cheers

Ellie Dawes
09.01.2015

Sorry to hear you've been hit by another infection Mark but as always it's great to hear your positivity. Your doctor is right of course, always best to concentrate on getting better and try not to worry about bad news that might never come. I'm sure that's easier said than done though! 

Good luck in the tour de France, ha ha! Maybe a good idea to come and do London | Paris with us first to see how that goes!

I remember when I first came to work here at LLR being incredibly insired by Andy & Alex, friends of Stan Petrov's from Aston Villa who cycled all over the country to raise money and to make him smile while he was going through treatment: https://www.youtube.com/watch?v=6ErwqPhWA2I

 

Owen B
09.01.2015

Mark,

This might be up your street if you're reading the Lance autobiography. 

http://www.amazon.co.uk/Riding-Through-The-Storm-Fitness/dp/0752876147

 

 

Anonymous
09.01.2015

Here's to winning Tour De France 2015 and getting fantastic results at the end of January (the first is a maybe, the second is a definite). What amazing people you have in your life to pick you up when the inevitability of life hitting you where it hurts sometimes happens. Perhaps because of the fact you had looked forward to Christmas Day so much and had such a great day, it made having your infection and feeling down even harder to cope with. But you're back on the up. With all our love as always, Rachael, Andy and Sam xxxx

Anonymous
09.01.2015

It really is great to see you writing again Mark because I enjoy EVERY word - you are truly inspirational buddy!!!!!! Onwards and upwards x

12.01.2015

Mark,

It's good to hear from you again although sorry to hear that you've been struggling for motivation post-transplant. Reading through your blog I was struck by the startling number of similarities to my own experiences. I found the adjustment to the outside world incredibly difficult and was hit by a number of infections which set me back - a bad bout of the flu and getting chicken pox for a second time were particular low lights which I had not mentally prepared myself for.

What I clung to when I got frustrated and felt low was that whilst ball achingly slow at times I was making progress even if it was three step forwards, two steps back. I also found setting myself targets to work towards was also incredibly useful so I think trying the session with the Awesome Choir of Rock is a fantastic idea - I look forward to reading the blog about that one!

The other thing that should not be underestimated is the psychological impact that going through something like a transplant has on you. I found that during the transplant itself I was so focussed on getting better, being positive and doing what I was told that I didn't really have time to take in fully what was actually going on. It was only once that was all over and I was released back in to the wild away from the safety net of the hospital that I stopped to think properly about it all and the possible complications that lay ahead.

You've got a fantastic support base around you and you're clearly a really positive and strong person anyway so you will get through all this and be a stronger person for it. However, don't be afraid to hassle your consultant or GP at any time if you're feeling apprehensive as you're not wasting their time by asking the 'what if' questions and it's part of their job to explain and reassure you of the road ahead. There are also help and support groups out there which you might want to consider. One of our bloggers, Brett, cannot sing the praises of his Macmillan support group highly enough: 

https://leukaemialymphomaresearch.org.uk/news-item/after-treatment-ends%...

Ultimately, this might not be for you but the important thing to appreciate is that you're not alone and that we're all here to support you as you've supported others with your brilliant blog. Hang in there!

 

15.01.2015

Really sorry to hear you have been feeling so lacking in motivation and of course it's completely natural o have all those "what ifs" going around your headIt's so brilliant though to see that, thanks to the great people around you for support and your own inner focus, you are feeling more positive and embracing things that make you feel good and look to the future. You yourself are truely inspiring. I also look forward to more Tour updates ha ha!

 

 

Anonymous
17.01.2015

Hi Mark, what you're struggling with emotionally isn't unusual, but that probably doesn't help you right now. Don't be afraid to ask for help with your emotional needs as well as your physical needs. Most cancer units will have counsellors attached, who are very experienced, and usually have more time to allow you to voice your anxieties than the busy ward staff. BTW I was also inspired by Lance Armstrong and devastated when he admitted the drug offences. Jane.