13.6.16

Ive not been up to blogging for a few days so now i have the task of 'catch up'.
Ive felt flipping rough. I never knew being neutropenic was so bad. Let me try and list a few symptoms.
My mouth is hideous. Mucositis to the nth degree. A white and brown tongue. I can barely open my mouth its so tender. Theres a constant awful taste which makes me feel nauseous. And theres an abundance of thick saliva - sorry if you're eating your brekky!
My oesophagus. Also severely mucositis-ed. If i swallow it feels like a bolder is blocking the passage. Needless to say i am not eating or drinking. I have attempted a few spaghetti hoops and they are able to slip down, unlike water, which causes no end of distress for me.
My tummy, also mucositis, is causing its own problems. I won't go into details.
I have fungal areas all over. Itchy, prickly areas.
My hands are so shaky and I'm so weak. When i go for a shower each morning I'm shattered afterwards, and just lay on the bed for the rest of the day.
My head feels like its been kicked in.
Anxiety. I have nothing to think about but my health so every thing done to me is hyper.  I worry about air bubbles in the giving set (you need 16mls of air for it to kill! Don't know who they tested that on!). I worry every time i have a drip. I watch it drip and it makes me nauseous. I feel nauseous when i say the name of the chemo drugs I've had! I worry when they inject a drug into my hickman. I feel i will react to everything. The saline can be a little cold and that makes me cringe.  When they take blood. When they give me jabs in the tummy. When they give me my tabs. When i lay down, when i get up again. This is all psychological. Strangely i no longer have night terrors! I suppose theres only so much stress/anxiety a body can have.
Tablets. I have buckets full, slightly exaggerated, but there might as well be buckets full for all the trouble they cause me. How do you swallow a tablet, and some are big buggers, when you can't swallow and you can't drink.
Nausea. Ive had constant mild nausea, which peaks on a few occasions into  'I'm gonna throw up' mode. This was the bit i was dreading, but i seem to have mastered it. I don't bother with the anti sickness tabs cos they have an effect on the rest of my body. Some make me shake and shiver, but make me drowsy. Another makes me so drowsy i can't keep my eyes open. And i still vomit. So whats the point of taking them. Ive always been one to take as little medication as i can. So it seems twice a day, usually when i try and rinse my mouth out, i retch and retch to the point my tummy muscles have braided themselves.
Observations every 4 hours. These are the latest readings. Pulse 120, BP 70/48, Temp 37.4. O2 normal!
When the pulse is up they're not happy with me. When the BP is down they're not happy with me, and they take it again and again. 'Try another machine', 'Try another arm'. And its always low.
'Drink more they say'. 'I can't cos i'll be sick'.
So then they start an intravenous infusion for a few hours to top up my fluids.
When my temp is up.....well thats a different story.
This means i have an infection. Not a good place to be when you have no neutrophils at all to fight it off. All hands on deck. Blood cultures taken. Loads of blood from each lumen of my hickman and also from a vein in my arm. All in the off chance they grow something and they can find out where the infections is. Normally a  50/50 chance they find that. Strong IV antibiotics started and every 6 hours. These have a wonderful effect on a body!!!! Lets just say i get plenty of exercise!
And because I'm in isolation i have to ask for everything that i need. I hate that and feel so guilty. They're all so busy, and so many times it gets forgotten and then asking again i feel worse. Luckily they are all lovely here. I was lucky to be put on the best ward.
Transfusion after transfusion. £200 a bag, and thats not including the giving sets and flushes etc. Ive had 5 now!
And now........my hair is starting to go again! Luckily its only about a centimetre long.  Its gonna get chilly.
And the thing that makes me smile is seeing Dr Jack. He always reassures me. He tells me I'm doing well, but with a bit of flirting, teasing and humour. He told me today I'm made of steel girders! I think that means I'm doing well.