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.