It’s now morning on Sunday 26 April. 4 days down still here. The nurses on the ward have all given such fantastic care and I have tried to make the most of the situation and treat it like a bit of holiday. I live with my dad and we generally share the tasks such as cooking etc so been able to order from the menu and have three square meals a day delivered bedside has been quite a treat. And I can’t complain about the hospital food. I have not stayed in hospital since childhood and have heard up and down rumours of the food but I for one can’t fault it one bit.
Also to my dads delight I have began eating meat again whilst here having gone full vegetarian around three years ago. The choice was due to trying to resolve an issue with constant gout flair ups which were ruining my daily life and to some degree, been quite sickened by modern farming practices and the quality of the meat we are fed in the supermarkets. But due to my cancer treatment I have ended up on an anti gout tablet called Allopurinol. I had originally decided not to take this tablet and wanted to try control the condition through diet alone. Believe it or not the gout was a symptom caused by my HS blood condition with excess iron been the cause of the flair ups, but seen as the diet change had been successful I had decided to stick with it. At this moment however as the HS is wanting centre stage again I figured I could use some B12 in my diet which is a vitamin very hard to get in a vegetarian lifestyle. I have however told pops it will be farm market meat only but he can’t wait for some lamb shanks. I never made him go vegetarian but he has been eating a lot of vegetarian meals and “fake” meat products when we eat together bless him.
Anyway, back to the hospital stay. I have had daily blood transfusions, 9 units now in total so I think as far as vampires go I have now officially reached the rank of Count, however most people that know me would probably remove the letter o from that 😂. Basically my good old spleen has been destroying the red blood cells as quickly as they are giving them to me. Unfortunately that means I have missed this weeks Bleomycin cycle and am highly likely to miss the next one also. The docs main focus now is that they want to get my blood count up to 80 and have it stabilise there at the very least before I can go home. The blood count is not the cause for delay in chemo but the fact that the anaemia is having a large effect on kidney function. If the kidneys can’t work to full efficiency during chemo and especially with Bleomycin the toxicity risks increase. Bleomycin can have nasty effects on the lungs so it’s important the body can get rid of it and not have it linger too long. The oncology docs are not too worried about the missed Bleo cycles and their main aim now is to ensure I’m fit enough for the next 3 day cycle and to take the Cisplatin and Etoposide as missing these would be very unwelcome.
Bleomycin is not always regimented in treatments, sometime you may have 4xEP instead of 3xBEP for example,but it was originally explained to me that the Bleomycin would add around 10 per cent to the chances of success overall and given my stage and cancer type the docs decided this was very much worth the risks of taking the Bleo. Bleo has nasty effects on the lungs and even when handled well by the body there is a lifelong consequence of having Bleomycin. I have to carry a card for the rest of my life now so docs know I have had the drug. It means you are allergic in some ways to oxygen and can’t be incubated and fed oxygen anymore and will be a consideration if ever having to be put to sleep for an operation. As you can imagine this means my risks with good old Corona are now increased and is the main reason they had to explain this in the consent forms.
But the good news is that yesterday I hit a new record of 68 blood level which is the highest since been admitted. And having had two more transfusions yesterday which were given later than normal due to the weekend, this morning I have seen my heart rate at 69 so I’m thinking we will hit a new personal best today. I had started to feel quite bad again yesterday afternoon but decided I needed to kick myself up the butt a bit so did some breathing exercises which gave me a boost of energy so I decided to pack some clothes tightly in a bag and make a little step and did 40 minutes of stepping and stretching. I’m a large fella “understatement” but have always been able to bend and touch the floor which after some working up I was able to still do which gave me another little boost. I was recently told by my rheumatology doc I am hyper flexible in my joints so it would appear I missed my calling as a gymnast all these years 😝
I am willing my body on to take control of the situation again which I feel it should over the next few days. It looks like the effects of the chemo, and some of the drugs used post chemo all contributed to my body deciding it no longer wanted to manage the HS on its own. At least everyone is now aware of my HS and I’m optimistic that moving forward we can avoid a repeat of this and have some plain sailing for the rest of the chemo sessions. Well, that’s my plan and I’m sticking to it gosh darn it.
I have confirmed with the nurses there is a Marks and Spencer’s in another wing of the hospital somewhere and their peaches and fruit is about the best you can get these days so I’m thinking an adventure could be on the cards for later today. And maybe some doughnuts may accidentally fall into my basket whilst shopping too which would sure be a shame.
Sending my love to all the readers of my blog and hope you are all managing lock down well if reading this during the current corona crisis. And remember positivity and love cant be defeated if we spread it. 😍😍😍😍