Saturday, 2 January 2021

02/01/21 Diary and RUDY

We did get that walk in - a local one across fields, round a nearby farm, and then back along the road where we did some litter picking. It's a pity nobody else has that much of a social conscience...

Again, nothing new on the myeloma front except that the SFL treatment worked again. I'm just in that stage of waiting for the next blood tests and results along with the next bag of pills. It's the unavoidable rhythm of this disease.

Next week is quite busy. I have to go to Springfield for the blood to be taken on Monday (must remember to ask them to add VitD and maybe B12), then I have the dentist in the afternoon to check up on the exposed bone and the chipped tooth, and at some point there will be a 'phone consultation with Dr.Ch. Then on Tuesday I have a  scheduled 'phone call from my GP and another trip to Springfield to pick up next month's meds (but not for Zometa at the moment, because of the jaw problem). On Wednesday I go to the GP surgery for my regular B12 shot and for a RUDY blood sample. More about that in a moment. Thursday has an eye test - because I have both early cataracts and early signs of AMD (fortunately not progressing, so far) I now get called in once a year. I expect that'll mean new glasses again.

Can't remember whether I've written about RUDY before - the Rare and Undiagnosed Diseases studY. I've signed up for a five-year myeloma research programme which involves regular blood and urine tests. For this first one at least I have to get the GP practice to take a blood sample which I then send off to RUDY in Oxford - they've provided some rather impressive biosecure packaging for the purpose and the practice gets £16 for taking the sample.

More here if anyone's interested: RUDY

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