Hi folks. Sorry it’s been quite a while. I haven’t really got a good excuse, although there’s not much to tell you. I’m not going to hospital for checks so often now. My light chains which are good indicators of remission are still fine. My regular blood tests were all disappointingly down last visit for no apparent reason but I’m told not to worry! My immune system seems to have come to a halt at a low level. Recovery seems very slow, although I’m obviously making some progress. Just impatient!! Am on more limited meds now - back on my Bonefos which strengthens bones (and gives me indigestion!). Also I take Zantac for indigestion and a mild diuretic as my feet and ankles keep puffing up - mind you they used to at school! So peeing constantly!
On the good side I can walk a bit further and have managed to potter quite a bit in the garden during the good weather. Bob and I managed a couple of nights away in a pub in a posh village near Rutland Water. We visited Barnsdale Gardens and I did quite a bit of walking, broken only by visits to the cafe! I was shattered on our return but it perked us both up. My digestion is possibly a bit better - still have ups and downs and acid reflux is a constant, but I have changed medication and it may be starting to work at least a bit. I’m not as low in mood, although I still have off days/hours and can get very irritable! I basically no longer look at the internet or anything which might remind me of my illness, so I can ‘live for the day’. If it comes back, then I might get interested again.
I am still plagued by aching and very weak muscles - getting up and down is a struggle and I get amazingly stiff, especially early morning. My numb feet don’t improve and are prickly. I have other minor problems like dry skin, spots in bad places and sore fingers. My sleeping patterns are very variable and I am definitely stupid - chemo brain is real! The Guardian had a good article on it the other day and it should go away eventually. Meanwhile I struggle with quick crosswords and Countdown, much to my family’s amusement. I’m also doing lots of union work by email and phone which I enjoy. Today I went out for the first time to a union event I helped to organise - Workers Memorial Day commemorating workers who have died or been injured or contracted diseases through work. I am shattered this evening but enjoyed going out to meet old friends and comrades in arms!!
Have had quite a few visitors recently which I really enjoy and also much correspondence. Many thanks to all concerned - it really helps. I am hoping that in a month or so I can return to driving so I can get out a bit, even if it is just to the library or hospital. But I think my concentration and co-ordination are still rather poor at present. Also I have no car - Tom took it over and then sold it!
Have just looked at my last blogs and realise that really I have progressed quite well compared to then. I guess that I don’t notice it on a day to day basis.
Anyway, I will try to write again soon - need my bed now! Love to everyone and remember to make time for yourselves, especially in this nice weather.
