MJN
Posted by
MJN

Every journey starts with a single step

MJN
Posted by
MJN
24 Nov 2014

It’s been well over a week since I was released now and to be honest, as brilliant as it has been to live at home and free from any form of pump or line, I’ve been way too knackered to blog but tonight I feel good so here is a slice of whimsy that I dreamt up last night.


Since leaving hospital I’ve been determined to kickstart my body and its new cells into working properly by being physically active whenever possible. Starting with a slow, stilting shuffle and building each day, I’m now up to walking about a mile without too much trouble and my surroundings are providing ample challenge in terms of lung bursting terrain. We live in a village in the Pennines where you will very rarely find a flat surface upon which to walk. Within 100 yards of anywhere you will come to an up or a down – there seem to be many more ups – which is great when you’re in the mood for mountaineering or sledging but not so good for the man with low haemoglobin and the fitness levels of a particularly slovenly sloth. The road past our house is on an especially steep gradient so going for a stroll involves starting with a climb or finishing with a climb – you simply can’t avoid it.


I’ve been frustrated, angry even, with my lack of fitness as I had got myself into relatively decent shape before the transplant and now it’s all gone. Muscles wasted. Power depleted. But as I was reminded by many nurses and doctors, it was that fitness that helped me through the transplant and infections in the first place, therefore losing it is a necessary part of the process. I’m impatient but should take lessons from where we live – this isn’t an overnight, short term project, it’s a process of building that’s going to take a long time to complete.


Our village and its buildings represent a social evolution over the last 300 or so years and I can see much of that progress in the steady mile that I can now cope with from the back door. Pennine villages around Huddersfield have been connected with weaving fabric as long as the trade has existed and the path of progress is all around us. At one point this place was a settlement of individual industries still evidenced by the terraces of ancient weaver’s cottages with their rows of tiny first floor windows facing south to maximise the light and built into a hostile landscape. These represent my body at the moment; all bits and pieces, not necessarily working in harmony and certainly not a model of efficiency. That’s why I’m hoping that a biological, industrial revolution takes place in my bones over the coming months.


I need my new marrow and immune system to become a powerhouse; a snorting, thundering, steam driven mill of the industrial revolution, churning out the goods 24/7 with a ruthless efficiency. Certainly there will be barriers along the way; infections will act like Luddites determined to halt the revolution but their efforts will be futile because I’m determined to overcome. The steeper the hill, the greater the gain. That’s the way I’m seeing it at the moment.


I’ll need help along the way. Last week I needed a top up of platelets to help my blood clot and 3 units of blood – the most I’ve ever needed – to top up my own depleted supplies but on the up side, my immune cells remained high. Today they were even higher and there’s no need to add fuel for a few more days. Progress. Currently our bedroom shelf looks like a Boots Pharmacy counter as I need to take a heady cocktail of 25 tablets every day to suppress my immune responses, protect from nasties and support my recovery but at least now I know by heart what to take and when. Progress.


I could not get myself to Jimmy’s for the twice weekly appointments without the help of Alison (to drag me out of bed and tackle the M62) and my dad – chauffeur supreme, provider of pork pies for lunch and all round good egg. I honestly do not know how anyone could go through this without a very close support network because today’s big progress was walking from the car park instead of being dropped off at the door. Team Sky’s cycling guru Dave Brailsford would describe this as a marginal gain and marginal gains add up to big victories. Today felt like a big win so here’s to more progress. Sorry Dave, I’d love to sprint but in this case, slow and steady wins the race – lessons learned from a Pennine village.

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
25.11.2014

Your words cannot fail to amaze me Mark! You may not think you are but you are a real inspiration and I doubt whether I could be as positive as you are-but that's probably the difference, your fight and determination are clear for all to see-keep going Mark, we are all behind you.

25.11.2014

Great to hear from you as always, Mark!

Wonderful to hear that you're making your way back to fitness slowly but surely - I've been there buddy and can totally relate to every word of this blog. It's baby steps to begin with but you get better and better and I was running the London Marathon within a year! With your attitude and determination that should be a relative walk in the park!

Seriously, I think that you're a fantastic example to us all and I have every admiration for the way that you've dealt with everything. There will definitely be ups and downs and it's great that you are aware that the road won't necessarily be plain sailing (although I very much hope that it is!) However, little by little your immune system will get that little bit stronger. Watch out for chicken pox - I ended up getting that again and was completely underprepared (not that there was very much that I could do!)

All the best and keep doing what you're doing as it's obviously working!

Anonymous
25.11.2014

Dear Mark,
I am one of LLR cycling fundraisers and have been following your blog closely, often with tears in my eyes and worried how you might be doing. What brilliant news that you are back home, sleeping in your own bed, away from hospital smell and noise! Keep on walking - we are with you for every step of the way. We've have been there recently with our Dad who suffers from Myeloma. His treatment, an autologous stem cell transplant, was obviously less intrusive than your donor transplant, but he too had to overcome many obstacles and faced a similar struggle on the way to regain his fitness and energy levels. When my Dad walked from the car park to the door of the clinic for the first time, I felt so proud as if he had just won the Olympics. I am sure Alison and your family feel the same. I dare Dave Brailsford to call your achievements 'marginal gains'. It's quite the contrary! Start the race slow and steady, and you'll win the sprint across the finish line. All the very best to you, Alison and your family.

Anonymous
26.11.2014

Well done Mark - great to hear you're home! I look forward to hearing about your progress - onwards and upwards buddy!!!!!! Take care x

27.11.2014

So pleased to hear of your massive progress. I remember crying with frustration and telling my consultant that I should be doing more after a cyear had gone by. I must have sounded so ungrateful. It is a long road back, and once I accepted that I would never be the same it became easier.

Yorkshire is a wonderful place, and with that Yorkshire grit you will find the new you.

Best wishes

Anonymous
01.12.2014

Dear Mark, you are such an inspiration for others, and your words will give great encouragement to others suffering from blood cancers. Your drive and determination to get fit is just wonderful, With you every step of the way!

Anonymous
01.12.2014

Dear Mark.
You truely are an inspiration, you keep up the good work
All mountings are hard to climb but you will get there,
Keep that strength going, and as you say what would we do without
Are friends family, take care.

Anonymous
04.12.2014

Great to know you are out and about Nobby, getting stronger and stronger, keep up the great work. All those tiring steps at the moment will turn into a lumbering run up and a skip down the track before you know it.

Anonymous
12.12.2014

Hi Mark I got your link for your blog from LLR when I posted that I hope to go in for a stem cell transplant before Christmas! Thank you so much for taking the time to blog reading your journey has been a huge help to me! I look forward to reading your post transplant blogs as you continue through your recovery
Best a wishes