Hi, I am a 76 yr old and 2 years ago I was diagnosed with Breast Cancer which I was told was a small 15mm lump and I just needed lumpectomy and radiotherapy.  The Onco and BC Nurse were all very upbeat and cheery about the prognosis.  Because I would have difficulty getting to the hospital daily for rads I read that I wouldn't need it if I had a mastectomy so although the surgeon was reluctant he agreed to do it.  

When I went back after the op the mood changed noticeably and I was told I would have needed a mastectomy anyway because my lump was a Grade 3, 40mm Invasive Ductal Carcinoma with 1 lymph node involvement.  I was told I needed Radiotherapy anyway, 15 sessions over 3 weeks.  Plus Letrozole for the foreseeable future and bone meds.  Chemotherapy was never mentioned and at the time I was relieved but have subsequently wondered why.  Was it my age or was the prognosis too poor to put me through it.  I did query it once and was just told rather abruptly that "The Team decide on the best course of treatment" for me and that was the end of it.

Fast forward to 2 years this Februrary and I was diagnosed with Chronic Myeloid Leukemia.  Again, it was all very upbeat and told I would die "with" it rather than "of" it and just needed to take a daily chemo pill (Imatinib 400mg) to bring my numbers down.  Sounds easy but the side effects were horrendous.  It did work for the 3 months that I'd put up with all the discomfort and my numbers were coming down well and got to 0.486 (the aim is to be undetectable as quickly as possibe) Nausea, vomiting, diarrhea, agonising stomach cramps, leg rash, one swollen leg (tested twice for thrombosis but negative), endoscopy due to stomach cramps which only found mild diverticulitis.  Anyway, due to being advised by hospital to stop taking it, try again, throwing it up, starting on a lower dose (100mg) throwing it up, I'd been off it so long (with no BCR/ABL monitoring) that my numbers had shot up to 28%.  Not good.  However, with the aid of Zofran anti nausea I had managed to get back up to the 400 mg and keep it down so Haematologist decided to see what happened in 6 weeks so the next BCR/ABL result was 11%.  Due another next month which, hopefully, will still show a drop.  

So .. that's the history and my worst symptom was occasional debilitating stomach cramps, diarrhea and eye and lip swelling until now when I feel weak, tired, trembly and my head feels like it's full of water when I walk.  All a bit vague really and not something I want to contact my "Emergency" hospital number for.  The last time I did that for the stomach cramps they said to pack an overnight bag and get someone to drop me off there.  Kept me hanging about all day, did a quick blood test, rectal examination, urine sample, told me to lay off the Imatinib and referred me back to the haematologist and sent me home.  

What with being in Covid Tier 4 and being Christmas Eve now is not the time to be in hospital unless it's really urgent.  I have a turkey to cook for my disabled husband (ooh yuk! food is a turn off at the present time and it's an effort to eat but I have to because you have to take the pills on a full stomach).  

Well it's taken me hours to type this because the stomach cramps and diarrhea have returned and I don't know why I did really as I know no one can give me advice but maybe if anyone else is feeling low and miserable when it's supposed to be all happy, happy then maybe knowing you're not alone might help. 

Merry Christmas everyone xx