Following on from my latest I’ve been having a real mixed bag of a time in many respects. I’ve had some lovely weekends with my siblings. The problem is the weeks in between.
After day 1 of my 6th session of ECP where I had been made to wait 90mins before I could start my treatment due to needing to see a specialist and I had also managed to fit in an appointment with my dentist before all this, I approached day 2 with trepidation. I had to have my one year bone marrow biopsy at Kings and when that was done, drive to Guys and have my next session of ECP. I was relieved to find that a registrar was doing the biopsies that morning. Relieved because that meant she would be experienced. I know the younger ones have to learn too and I’ve had many practice on me, but just now I feel delicate and don’t want to be pulled about more than I have to be. Kate, the registrar, was great. She was friendly and professional and had an excellent bedside manner. She was also very proficient. The biopsy of course hurt when it came to taking out the core from in the bone but the liquid bit wasn’t so bad. The bruising was minimal as you can see and it was only painful for 24 hours. Now it only hurts if there is any pressure on it.
As soon as they let me leave Kings I got myself to Guys as quickly as possible only to discover that one of the machines was out of order and I had been bumped from the list and again had to wait 90mins to be connected up. When you have just had a bone marrow biopsy, it’s like being kicked in the back by a horse. The last thing I needed was a long wait in a hard plastic chair. It also meant that once again I’d be driving home in the rush hour. Thems the breaks though and there was nothing I could do about it.
When I finally went in I kept my fingers crossed that the extra medicine that had been put in my faulty Hickman Line would have unblocked it. Sadly this was not the case. I had to have a single needle session which takes nearly twice as long. At the end of the season the line expert came back to try and get the line going again but it was to no avail. They are talking about doing another linogramme. Sigh. I’m going to be so full of radiation soon you will see me glow!
I was very pleased to get home and get myself more comfortable. During the night though I woke up feeling sick and had a headache. This didn’t improve when I got up. I had a few sips of tea and then got sick. I wasn’t able to take any medication for 24hours and I spent most of it asleep. I also had a low grade fever. My poor long suffering partner was really worried.
Thank goodness after nicking a migraine tablet in the middle of the next night by morning I started to feel human and was able to eat and drink again. More importantly I was also able to take my medication.
I’ve felt weak and wobbly all week and a bit out of sorts. I’m a bit breathless and my bones ache. My stomach has been churning and I’ve had that delicate feeling.
It’s weird. I can put up with so much. I’ve got used to not being able to do things but I hate feeling ill.
Let’s hope things change soon and that it was just a reaction to the ECP.
Any way I’m in good spirits. I’ve got some lovely things to look forward to and I’m determined to come out on top of all this. One thing that made my day today was winning an Advent calendar from Leukaemia Care because I commented on their social media campaign to explain why #myCNSmatters. I’ve met some fantastic CNS (clinical nurse specialists) over the years. They have helped keep me sane in the rough times. There are also a great bunch of nurses in the Haematology outpatient supportive therapy unit and on Davidson Ward at Kings. I am always willing to stand up for our nurses and the nhs. Without them I would not be here. Thank you for saving my life over and over again.
Wherever you are and whatever you are doing I hope you can find the blessings in your life and that they warm your soul during the dark times.
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