My life with cancer and the effects of treatment is never dull. There’s always something going on.
Recently the team looking after me decided they wanted to push things with some of the other departments involved in my care so that a more holistic approach could be used and maybe they would be able to refine the medication I take.
Last Monday I was booked in to have a colonoscopy as well as an endoscopy and they were hopefully going to remove the PEG at the same time. This was all to be done under a light general anaesthetic.
I’d been asked to go in for a pre-assessment meeting. That appointment got changed twice and when I got there I saw a nurse who didn’t flag anything up. He gave me 4 senokot Tablets to be taken at midday on Sunday. Then he also explained that the 4 sachets needed to be given in a divided dose, 2 of them had to be mixed with a litre of fluid at 1pm and the other two with another litre of water at 6pm. I was also not allowed to eat after I’d had a light breakfast on Sunday morning. Not eating is not normally a problem for me but when you are on steroids, you really need to eat regularly.
As you can imagine it was hard work. I gradually felt weaker and weaker from all the running to and from the loo. Things eventually calmed down and the mini explosions eased off. I had to set off for Kings early the next morning. Now I wasn’t allowed to eat or drink anything.
When I arrived I had my obs taken. Then I was asked to change into a gown and they also gave me these paper shorts that had a flap in the back for ease of access. Lol. At least it keeps the rest of you covered up and protects your dignity.
I went through some questions with a nurse. Then a doctor went through everything and asked me to sign a consent form. Next the anaesthetist came in. She asked me if I had attended pre-assessment. I said I had and she wanted to know why an anaesthetist hadn’t been asked to see me at that meeting. She explained that was the whole point of the meeting. I said I was unaware of that. She said it was a failure of her department and she was very sorry that things had not been sorted earlier. Then came the killer. She said she wasn’t prepared to put me to sleep because of the additional problems I have and because I’ve still got swelling in my neck. She also said she would rather have me asleep in main theatres in case anything goes wrong. That way there are more people around to help should there be an emergency. I couldn’t argue with her as I could see her point of view and she was only trying to keep me safe. We also talked about that awful experience I had during the last but one anaesthetic where I woke up but was still paralysed. She wants me to see a councillor to make sure I’ve not been psychologically injured or am carrying too much trauma. She was extremely thorough and I was impressed by her. What wasn’t impressive was that the system let me down. I had to starve myself for 2 days and do all that bowel prep for nothing. I was so frustrated at the thought that at some point I’d have to go through it all again.
What I think causes problems like this is the system treating everyone the same rather than looking at the individual in front of them. We don’t all fit into boxes. Some of us have very complex medical histories. We are expert patients though and carry our story from one medic to the next. The only trouble is we don’t always know what the system requires. Let’s hope and pray that the pre-assessment team learn from this and that other patients don’t have to be put through the ordeal of bowel prep and no food for no reason.
Moving on, I’ve been booked in for a load of extra tests but the surgery hasn’t been rescheduled yet. The problem with this is haematology want the biopsy results in order to decide on a different sort of immunosuppressive drug. They can’t move forward until this is done. Where they can get on, they are. I’ve started a monthly infusion of a bone strengthening drug. I’ve also been approved for IVIG treatment. Immunoglobulins are in short supply nationally and in order to receive them your doctor has to make a case to a panel. My doctor told me today that a years worth of treatment had been approved. This is good news. She also said that one of her patients was turned down. I hope and pray more people donate to help reduce this shortage. IVIG infusions will give me some antibodies to fight infections. At present I seem to catch anything going due to my low immunity.
I went to bed last night feeling a bit heavy and I was really tired. In the night I kept waking up because I was too hot. I thought the heating was on. I was also achey and very itchy. This morning my arms were covered in bruises where I’d been scratching. I also felt rough. I took my temperature and it was 38.4. My sats were 92. My heart sank. I was meant to be going to Canterbury Cathedral for a training course and then I was going to spend a lovely weekend at my sisters and she had planned for all the family to gather on the Saturday. This has been deferred from just before Christmas when I was admitted due to having flu. I knew I had to ring my lovely CNS and I knew she’d say I had to come in and be checked. I so didn’t want to do that though. Sadly after checking me over the lovely Dr Shu decided I needed to be admitted. I am gutted. I want to be having fun and mixing with the gang. I don’t want to be away from my partner on Valentines Day. I don’t want to be stuck in a place with rubbish food and crap views out the window. Yet I also know I’m fortunate and blessed. I’ve had xrays and blood tests. I’ve been given IV antibiotics and now have a 6 hour phosphate infusion dripping through me. I don’t have to question if I can afford it and I know my team will always do the best for me. That doesn’t mean that sometimes I don’t feel sad though or hard done by. I hate the impact all this has on my family and social life. It makes it so difficult to plan. I do plan things, like spending the weekend with my sister, and then I have to take it on the chin when these arrangements are scuppered.
Let’s hope this is going to be a very short admission and I’ll soon be getting up to mischief again.
Thank you for all your love and encouragement. Let’s hope that one day this will all be a distant memory.
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