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The physical journey back to life

Posted by
03 Aug 2017

My journey from wheelchair back to football, golf and hillwalking

As you've read in my previous blog, I've had a few ups and downs in my cancer journey, but today I  want to talk about my physical journey.

Before being ill with Hodkins Lymphoma (HL) I was very active at 51, I usually managed a couple of games of 5-a-side football and a couple of rounds of golf a week as well as walking in the countryside and going hillwalking, with an annual trip to the Lake District in October, where with a group of friends, we would chererfully walk 8-10 miles a day for 4 days. All this activity culminated in fulfilling a lifelong ambission to go to Mount Everest, this I did in November 2010, being able to trek to Evereest Basecamp, which is the background picture. As you can see, for my age i was very fit.

However along came my HL, which in turn bought with it many obstacles to these activities. I was extremely tired and breathless and could no longer run, so out went the football and strenuous walking. After the ABVD teatment had failed, I needed a double lumin Hickman line fitted to receive my future treatments, this got in the way of my golf swing and frankly I didn't want to do anything, that would jeopardise my treatment. I also made a very conscious descision to focus all my efforts on the treatment and recovering afterwards and would save my energy for treats and events to reward myself.

 So I got into a regime of treatment, recovery and setbacks and did things, as and when I was able to. That was until 3 weeks after my 2nd dose of Brentiuximab and 5 days before my 3rd dose, I was on the annual trip to the Lakes, October 2013 and having done a few miles on the first afternoon, we were out for our evening meal, when I suddenly keeled over and started vomiting outside the pub. I remember the ambulance coming and talking to the paramedics and them giving me something for the pain. I don't remember anything else for the next 14 days, I was suffering with Acute Pancreatitis, bought on by my treatment. I'm told, that there was a 4 day fight with me pulling lines out and being totally out of it, before it was decided to place me in an induced coma for 7 days, I then needed a further 3 weeks in an Intensive Care, Unit (ICU) which involved lots of tubes and fluids and food, introveinously. All this happened 100 miles away from home.

After the 4 weeks in hospital in Lancaster, I had to be transfered back to my local hospital, not the most comfortable journey in an ambulance. When I finally came home, I was in a wheel chair and unable to walk. Nobody tells you, that you lose 2% of your muscle capacity a day  in ICU, I was in a total of 28 days and therefore lost 56% of my muscles, I also lost 5 stones in weight!

I now needed to learn to walk again and try to regain some strength, as I knew that my HL had come back. I had stents put into my pancreas in Jan 2014 and saw my HL consultant a few weeks later, who confirmed the HL had returned and that nothing could be done until I'd regained some strength and weight. So I asked for a referal to physio and started down that road. I started by pushing myself around in the wheelchair whenever possible, although initially I got tired quite quickly. The physio's got  me into the exercise pool at the hospital and slowly we built it up from there, until eventually i could walk using first 2 sticks and then one.  Eventually I was fit and strong enough to receive some treatment to bring the HL back in line, although not cure, that needed a stem cell transplant. I missed going to the Lakes in 2014, as I was preparing for my transplant.

As you've hopefully read in my previous blog, I had my first transplant in October 2014, which failed and resulted in me receiving my own stem cells in November 2014. I spent 2 months in isolation in the hospital and came home on 21st December  2014, in a wheel chair. I was rushed back into hospital on 29th December 2014, with several virsuses and mucositis, I spent another 3 months in isolation, before coming home in a wheelchair again.

So I started all over again, learning to walk in the exercie pool at the hospital and working on my various exercises that the physio's gave me. I eventually went from 1 to 1 treatment to various exercise clinincs geared to my level of fitness at the time. I progressed from permanent wheelchair to partial use of it and two walking sticks. The photo at the top is from the Lakes, October 2015, I'd just walked about 200 meters from the car to the falls, it felt wonderful!

Over that first and second year, after the transplant, I picked up several infections and illnesses, each one was a setback to my fitness and so, a few times I had to drop back to previous exercise regimes and build up again. Eventually I was considered fit enough to be refered to Action Health, (AE) which in my area is the cancer arm of the hospital gym, funded by Macmillan. I was refered to AE and my appointment date occured, whilst I'd been admitted to hospital with yet another chest infection. So on the day I duly turned up for my appointment, by convincing the ward staff to let me walk from the ward to the gym on my own. I turned up in pyjamas, slippers and a dressing gown and with Dolly my drip stand, oh the look on their faces in the gym! That was August 2016

I started in the gym properly in September 2016 and was able to make that years trip to the Lakes. I then very quickly moved from doing a few exercises whilst sat down to more strenuous ones, although I picked up yet more infections, which knocked me back again. I should have had 12 weeks on the AE program, but eventually due to infections this eventually went on to become 26 weeks, due to me missing a few weeks, where i was unable to do anything. On reaching the end of the AE program, I was able to take up my opton to join the hospital gym, well at least iI would be in in the right place. 

I finally threw my walking stick away in April 2017 and in May 2017, I returned to my Mates on a Monday evening, to play in goal at 5-a side football, the first few games were funny, especially when i fell over on occasion. In the middle of June I managed a 7 mile walk and recently did 10 miles, my feet get incredibly sore, with my neuropathy, but i just smile and get on with it. Today, I'm now playing football and have even managed to score a couple of goals to boot lol and yesterday I went to the Golf Driving range and hit some golf balls for the first time in five and a half years.

I'm still nowhere nearly as strong as I was, but with a one hour game of football and 2 gym sessions a week, I feel that I'm slowly getting back to where I was and building my strength up for whatever lies ahead, oh and of course my annual trip to the Lakes in October.



Tim, what a roller coaster journey you have had with your diagnosis, treatments, side effects and battles with fitness. Thanks so much for blogging it all, it has been so helpful.