Stupid Disease (Or Ward 19)

Some of the Calendar Girls who still raise money for Leukaemia Reasearch

All of you who read my blog regularly or know me, know that I have CML (Chronic Myeloid Leukaemia). I don't blog about it a lot because most of the time, I take my tablets and I am fine. 


This week, well probably for the last month, I haven't been great. 


I have been getting increasingly breathless. I've been using the lift at work, that no one uses. Embarrassing.


My feet and ankles are swelling up. Which is horrible as my feet are one part of my body I am still quite fond of. I currently have pig feet.


And I have had pins and needles in my fingers and achy painful wrists and arms, particularly at night. I thought this was my carpal tunnel playing up. I brought two new wrists braces (at the extortionate cost of over £35.00!!!)


And I have been feeling even more tired than usual.


I have felt about a hundred years old. Can't breath, ankles hurt (so I have a bit of a hobble) and struggling to type, write, use my smart phone. I know, for a geek like me not having the use of my hands was a killer.


It all came to head, when I went up the two flights of stairs at home on Tuesday and forgot something downstairs. By the time I got downstairs, I had completely run out of breath. Hubs caught me wheezing and having a bit of a sit down.I was told, in no uncertain terms, I had to call my out patients ward the next day. 


Next day, I went to work as usual and gave them a call. I was told to come in immediately. So after, I had had a mini meeting, stopped off for a sausage and egg McMuffin (guilty pleasure), I got there a couple of hours later. 


There are two bits to Ward 19. There is this long corridor with lots of rooms coming off it where you have your blood tests and see the consultants. This is where I normally go. Then there is this other big room. Where the 'proper' Chemo goes on. Although my tablets are referred to as Chemo, they aren't Chemo in the traditional sense. People lie in beds or sit in seats and have tubes and drugs attached to them and  there they stay, for a really long time.


I had to go in the big room and sit in one of the chairs. I had an ECG, a blood test and a chest X-ray. I was there nearly 4 hours. I was prodded and poked by a lovely doctor, was given coffee and water and looked after beautifully.


Turns out, my tablets has a side effect (they have a few). They can give you fluid on the lungs. Which leads to the swelling in my feet and wrists (causing carpal tunnel). Fab. So I am having a tablet holiday for a week to see if I improve. Then, the clinical trail protocol is to go back on them, and it may or may not come back again. If it does, I may have to go on another clinical trial.


I am gutted, I was getting on really well. Recently, they cancelled a bone marrow biopsy as my response had been so positive. I thought I could sideline this stupid disease, but it has snuck up on me again.


But, then I think about all those people hooked up to drugs and machines in ward 19 and count my lucky stars for my quality of life and my day to day.


If you have a moment and a couple of quid, go to the leukaemia research website and give them your cash. They are doing great work and making great strides in blood cancer research. Thanks. X