Granddaughter suffers too

I didn’t get chance to post yesterday for the last day of #bloodcancerawarenessmonth #makebloodcancervisible. #lifewithcancer and #mds is always interesting. I could go on forever playing with the MDS letters. Today to the ones in the frame I would also add Many Diagnostic Specialists and Many Dedicated Supporters for My Daily Sojourns. Ok I must stop. Lol.

To bring you all up to date. I’ve spent the day at KIngs. My line is playing up and not giving any blood. I’ve called out dinarod and put some drains unblocker down the line. It’s fizzing away for half hour then we will try again.

Then I saw the delightful Victoria (consultant) She has had a good chat with the immunologists. They have suggested some more sophisticated blood tests. One of which is looking at a certain T-Cell that may be causing problems. I have to come back on Friday for these tests. She also wants me to stay on the high dose steroids for longer to see if that reduces the inflammation going on in my system. My counts are not too bad but my kidneys are not happy so some tweaks in medication is needed.

I’ve had a busy few days and I feel exhausted. My aches and pains are increasing as the cells come back in. Victoria doesn’t know what caused them to plummet. Working theories are that it’s either the result of an infection or it could be and autoimmune response. I just have to keep going until they get more answers.

As I write this, I’m sitting in the pharmacy. I’ve been here 30 mins already. They queried the controlled drug prescription because it didn’t specify that it needed to be capsules. Sometimes the rules are interpreted too rigidly. The young man was telling me I had to walk all the way back to haematology. Fortunately a woman intervened and said she’d sort it. The problem is they are dispensing up to number 359 and I’m number 334. It makes you wonder how long it will take to get sorted. I’ve been at Kings since 11.30am. It’s now 5.30pm. I’m meant to be taking my granddaughter to choir practice at 6pm in Plumstead. There’s no way I can do it now. It’s so annoying. This happens really regularly. People don’t realise the impact of all these appointments on the rest of our lives. It’s not just me that suffers but my granddaughter too. I find it so frustrating. Ok rant over. Will have to see what I can do to lessen the impact.

I wish you all Many Delightful Surprises that bring light and happiness to you as you live with your illness of support those who suffer.