Well since I last wrote I have had two more stays in hospital – I am in Leicester atm and was in Northampton. The gap between visits was small. I was very nauseated and going to the loo a lot with the first visit and couldn’t make the journey up to Leicester. However, Northampton don’t have the facilities and knowledge that Leicester do (one of my tests was sent to the wrong place and the result hadn’t come back before I left) and they didn’t really get to the bottom of things.
I stupidly tried to go back up to the previous amount of feed on my PEG, but it was too quick and I had stomach problems. The dietician and consultant agreed I could reduce the amount. However, I struggled with even this amount. Then last Monday night I was very shivery, was sick and had a high temperature. Managed to make the journey here.
At first they thought I had a line infection, so a registrar took the decision to take my Hickman line out, which may have been wise but has caused huge problems as it was very difficult then to put cannulas in. I needed 2 and it took 9 or 10 goes by several people to get them in. One person was really poor at it and tried 4 times before getting it in. However they both had to be removed as they didn’t work for more than a short while and one ‘blew’ the vein. Another worked OK for a while (I only needed one by this stage) and then had to go as it started bleeding. The last one on the back of my hand was working beautifully until I staggered a bit getting off the loo and knocked it out. Atm I have nothing – someone is coming to put one in this afternoon, but where it will go I don’t know as all my usual veins are covered in needle marks – look like a drug user!
The next theory was that I had a chest infection – the consultants heard crackles in my lungs, although I wasn’t coughing. I was told it was pneumonia of a sort. I have been told I have to have a bronchoscopy this week – another nasty procedure to look forward to (tube down throat into lungs). Hoping the sedation will knock me out, but not too hopeful. It will be at another Leicester hospital. I have been taking a strong antibiotic, which they have just stopped, and a very strong anti-fungal. They give you the anti-fungal just for 10 mins the first time, as the possible side effects can be severe. Then wait half an hour while you imagine you have all the side effects and then you get an hour’s worth. I do feel very queasy afterwards, but can cope with it.
Atm I seem to have a head cold of sorts.
I had given the PEG a miss, but the day following a restart with only a small amount I had incredibly severe nausea and spent the day retching from waking at 6 until around 11pm when it began to ease. The consultant said that PEG feeding and strong drugs don’t mix, so I have taken myself off the feeds altogether atm and will try just to eat more, but gradually. I am trying a bit of cooked lunch today! Not feeling like it, and it always comes very early, but once I start eating I can usually manage a bit.
I am in the bone marrow unit, so very privileged! The rooms are big and the nurses lovely. They are woefully stretched. I wrote to Leicester about staffing after my stay on ward 41 and they wrote back admitting there were three occasions during my stay of staff not being up to complement, but there was a lot of waffle and mention of a staff review, which staff are very cynical about. Patients don’t like to ring for the staff – I find myself saving up things I need, so I don’t have to pester them for mundane things. They need a nursing assistant on the ward at all times to do those things and provide general support. I will be writing again! It is important.
You will have got the impression that it’s been a bit tough, and it has been, but I seem to be able to cope with hospital a bit better now and on days when I feel better have generally read, watched rubbish TV, done work on the computer etc. I guess at some stage I will start to improve – people still say it’s early days and it could take a year.