28th July – Restarting Rehab

Delighted to say that Monty is starting to feel more like himself again now. We had a relaxing weekend, with Maya returning from France, and both Viv and my Dad visiting on Sunday for cricket and football watching (and some lovely catching up time).

Monty has been back on the rowing machine, and we have restarted following the physio exercises. Also restarted the electrical STIM to Monty’s hand / fingers. His shoulder has become sore again and his spasticity is much worse in his right arm again, but hoping restarting the exercises and stretches will resolve some of this (shows what 2-3 week break in rehab can do).

We had our first visit from NHS community physio today, it was Charlie from Danesbury – she last saw Monty on 27th January (when she left the in house team to switch to the community team) this was before Monty could speak (or walk) so she was amazed with his progress. We will get 6 visits from her at home, and they can also see us at the gym in Stevenage. They have also referred us to a local upper limb group run at Danesbury. As I was chatting to Charlie (and a student physio Luke who was with her) it did make me aware of how much physio and rehab Monty has had so far (and how much I have learnt).

The last 3 weeks have been very traumatic for us both, and it’s taking us a while to settle back into a rhythm, but we will get there. It’s given me another whole set of support forums to hang out on, I get to flick between researching and learning about stroke rehab and cardiac rehab now ! It’s fabulous to know that his heart issues seem to be resolved, but then it hits you that we can’t undo the impact of the stroke, we can continue to make small recovery steps.

I’ve also done more reading about the impact of radiation and chemo. They are starting to reduce the volumes of both chemo and radiation for treatment of lymphoma if possible, as more people are surviving Hodgkins Lymphoma long term (due to treatment), but this is leading to more people surviving to see the long term effects of treatment, particularly if you they had cancer as a younger person. We knew when we were in Germany that they had the highest survival rates as they did the most aggressive treatment (Monty had BEACOPP chemo and 30 gy radiation to his neck and chest). We were always on the lookout for secondary cancers, but I hadn’t known that radiation is known to increase the rate of atherosclerosis – we should have been on the lookout for this as well (narrowing of his arteries, in his neck, heart etc). But hey, the treatment saved his life in 2011 so can’t blame the radiation too much !