My nurse has been round again today. She is sent by the Dietician at the hospital, who is part of my MDT. She looks after my feeding tube, checks my weight, and gives me a quick overall check up. Last visit two weeks ago the nurse diagnosed oral thrush and gave me a letter for my GP asking for a prescription. The surgery were very unhelpful and I eventually ended up with a prescription for something else. I was grumpy about my GP two weeks ago. My nurse is now very cross with him. My condition hasn't cleared up, and what he prescribed is just a multi purpose mouth gel that I could have bought in Boots. So a letter is now going to be faxed to my GP from my team at the hospital insisting that the correct item is prescribed. I have found the item they want me to have on the internet. I can have it sent from Bulgaria for a few pounds. It is very tempting but the nurse says I am to behave myself as apparently many prescription items bought from abroad are counterfeit. I am trying not to be cross with the GP as they were quick enough to get me referred to the hospital when I went there with my lump, for which I must be grateful.
The nurse has also bought the news that she'll have to change my feeding tube (PEG) next month. It will have been in then for 6 months by which time there can be issues with leakage of the balloon water. She says it doesn't hurt, I'll only have to lie still on my bed for a few minutes and I can close my eyes. I'm upset with myself that I've not been able to manage to eat properly yet. I also feel a bit of a wimp because I can't cope with drinking the supplements that go in my feeding tube. If I could manage that they would take the tube out. I have tried but these shake drinks taste foul. The smell and the texture of them make me feel sick.
The nurse says I mustn't keep beating myself up over my eating. She spends all her working days visiting Head and Neck cancer patients with feeding tubes and she says I'm weeks ahead of many of the patients. I think the problem is that my team never warned me just how long this recovery was likely to take. The nurse has been the only one who has given me a realistic idea. In fairness to the team though I don't think I could have dealt with that on top of everything else, which is probably why they never told me.
I have been reminded again that it is my job to remain cheerful and positive, to rest and not to get stressed. Avoiding stress might not be easy this afternoon. My husband has just gone out to buy me a KIndle. I am looking forward to getting it as I do a lot of reading now. However I am not looking forward to setting it up as I am hopeless with technology. Apparently the first thing I will need is the password for our WiFi network, which of course I can't find anywhere.
