Hi all sorry it’s been so long but it’s been a rough week. Finished my last 5 day stretch last Sunday and all seemed to be going well. Was back at hospital on the Wednesday for a single Bleomycin session. Session went ahead and the chemo was done just after midday which would have been a record early finish. However the blood test results from the morning came back showing my good old HB had dropped to 77 so it was blood transfusion time. They ordered me two bags of the finest red and by the time we were finished it was after 6pm. I left happy though optimistic that at least this time I had the blood as outpatient and may avoid hospitalisation as an inpatient at last. Went home and felt OK but tired due to the long day and slept all night. Next day I wasn’t too bad but had a rough night Thursday night feeling anaemia kicking in. I decided I would try weather the storm this time as I was determined not to go into hospital again and it didn’t feel as though I was super anaemic guessing I was somewhere in the 70s. Got a call from one of the nurses from the clinic, there’s two parts to my care, the clinic downstairs with case nurses and oncology doctors whom I visit once a week and then ambulatory care upstairs who are the nurses who administer the chemotherapy. The ambulatory care nurses are serious superstars who make a quite horrible situation seem like something very routine and friendly. Anyhow back to the phone call, clinic nurse called sounding panicked and informed me of the test results which showed the HB at 77. I informed her they had given me two bags upstairs on the day but I was still feeling a bit rough and whilst still OK could be worth popping in so they could do another blood test and see where we were at. After checking they decided not to do that and just informed me to ring the emergency number if I felt bad. So much for been on top of the situation. I made the decision I was going to get through as like I say I didn’t want to be admitted again. I was hoping if we did a check could get the blood as an outpatient which is what we had decided with the docs during last consultation but it appears I would have to crash and burn again if any more help was to come.
Saturday morning around 1am woke for a toilet visit and noticed pain in my leg. More of a dull ache but nothing severe. By the morning the pain was quite bad with both legs, both arms and upper back now in pain and walking it self becoming difficult. I figured this to be a side effect and cracked on with the day. I had seen a guitar amp on gumtree for a great price and had arranged to make the collection Saturday so I figured I would take pops for a drive and see if moving about eased the pain. We went and got the amp and may have had a cheeky Maccy D. Came home had a play on the amp and tried to chill. By around 8pm the pain was super severe, my knees were in agony, walking was near impossible and arms shoulders and back were in a lot of pain. I have suffered gout for 10 years before resolving the issue so know severe pain and boy oh boy was this agony. Made the call to emergency number and explained all the symptoms, she advised me to call for an ambulance and the back pains were also causing chest pains, she informed me if the ambulance conclude its not a heart issue to have them bring me to St James but if a pan emergency obviously I would have to go to the local hospital. Called the ambulance and crew came and checked me over confirming heart OK. Unfortunately they refused to take me to St James claiming they not allowed which is funny cause the last crew took me just fine. I guess this crew couldn’t be arsed and only offered me a lift to BRI. I said if non emergency I’m best going to the hospital caring for me and my condition so they made me sign the computer to say I refused to go and was initiating my own care plan. Lovely interaction whilst in agonising pain. As such I hopped in the car and drove my self to St James. Again I was admitted. Once there the pain settled, they took blood samples and the overnight doctor re assured me it was likely a reaction to the chemo. The pain eased and I was able to sleep till this morning. Nurses informed me blood test showed HB at 74 so they were arranging two more bags of blood for me. Saw a lovely consultant and assistant later in the morning who explained this was a super rare reaction which can occur with the Cisplatin which is one of the drugs on the 5 day session. At least I’m keeping with my theme of only doing the rarest things 😂. The pain had eased almost completely by this point and they explained it was just a reaction. At least I’m not having that drug again now so that should be that. I had been told on Wednesday my magnesium levels had dropped heavy also and was given some tablets. The consultant this morning suggested I have a IV of magnesium as this would raise the level much quicker and they might as well get all my levels up whilst there and they wouldn’t have been helping the matter. So today has been 3 hours of blood transfusions and a 4 hour magnesium transfusion. i wasn’t by any means an unpleasant day as quite a few of the nurses were there from my last stay on the ward and all the nurses on ward J96 and superstars also who make each stay as pleasant as can be.
Got home around 8, had a quick blast on my amp and wrote this. So much for avoiding hospitalisation. It’s been one heck of a 24 hours and proves you just never know what’s coming when on chemo. Fingers crossed 🤞 that should be the last visit, over the next week the drugs from the 5 day session should work out of the system and then I just have to handle the single drug once a week for the next 3 weeks which may be possible. But then who knows what chemo might throw at me lol. Again sorry for the delay in posting but it’s been a heck of a week. Planning to chill now till Wednesday then we will ride this rollercoaster again. Until then peace and love to you all.
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