Another week gone by, another visit to the hospital for Karine and I, another clinic day, well several clinics this time.
Despite holding the main steroid dose the same from last week and adding in the 'topical steroid' Budesonide the GvHD of the colon continues to rumble in a slightly threatening manner so my consultant has increased the Prednisolone to 15mg daily - pro tem hopefully. We showed her my new white cell donation from Alexi and Lucy, the three fluffy toy white cells, which raised a smile.
My weight is now increasing gradually week on week thank goodness and I'm getting a little stronger. Let's hope at least some of the weight gain is not just steroid side effects, fluid retention and fat. The dietitian is pleased. She also told me to try stopping one of the food supplements, the vile tasting Calogen Extra Shots, to see if that was upsetting my lower GI tract which brought a smile to my face.
Next it was a walk for Karine and I from Haematology to main outpatients for a respiratory check up, part of the routine follow up of the Figaro trial I'm on. The breathing is fine, slightly above average for an old crock of my age. They will continue seeing me for sometime to come to ensure the chemotherapy hasn't caused any lung damage. Smiles all round.
This begs the question why am I getting short of breadth on exertion (SOBOE) such as when going up the stairs or walking at anything other than a rather slow dawdle even on the level. Lack of muscle power no longer seems to be the limiting factor. If it continues then it's a visit to the vet :-) to try and sort this out.
Next on Thursday's task list was lunch. There was just time for us to pop into the marvellous Maggies Centre where K and I were welcomed with offers of tea coffee and mince pies, the chance to put our feet up for half an hour and chat, eat the sandwiches K had made and talk to anyone else who dropped in, there were several people. The facilities here are lovely, not like a hospital at all. Karine comes here for a yoga relaxation session when her back isn't playing up too much. Dropping into Maggies always put a smile on our faces.
Finally there was physiotherapy rehab in one of the hospital gyms. The is the usual hour of gentle exercises for haematology cancer patients followed by another cup of tea and a discussion. It was supposed to be led by someone from the chaplaincy this week, 'Life After Treatment' but no one was available so the specialist transplant nurse whom we all know very well and who always attends the discussion sessions led a general discussion about this. It is always very useful to share experiences, both good and bad, in a positive way and the group is very good at this. You come out of there feeling your burden is shared, that you will pull through despite set backs and the myriad side effects the treatment has bestowed on us. Another reason to smile.
Later on the same evening, Karine got me out of the house to walk around the block admiring the Christmas lights just going up. A few households do it and nothing over the top, very pretty to see especially in the darkness. More smiles.
A good day after a day feeling very lethargic and useless earlier in the week.
The previous weekend K had a lovely day being treated by Margaret & Neil Holden to a visit to Stamford and had lunch at the George Hotel. I was invited too but don't trust my GI tract to behave itself, it's apt to suddenly say "you've got to go NOW!" especially the first hour or two of the morning. I do wonder if some of this is psychological but seem unable to stop it. A big dose of steroids would work of course!
Yesterday we had lunch with Linda and Andy in Burton Joyce and then had an hour's walk by the Trent, it was a lovely afternoon with the midwinter sun low in the sky giving us a beautiful light. A gentle walk like this is a real tonic, another reason to smile.
* Coldplay - from 'A Rush of Blood To The Head' track 3
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