Frustrating, but still on the up!

Yesterday I was back at Southampton and hated my day! It was by no means the worst day I have had there as my time on the ward was the most difficult! But…

To start with the oncology unit was really busy, the consultants were all running late, and for the first time since May I had to have blood taken from my veins as all the lines, (my built in pipes), have been removed.

Due to the vile amounts and strength of the chemo I had pre-transplant, my veins are now smaller and they weren’t that big to begin with. A young technician tried to take blood from both arms to no avail and then beeped the senior nurse to ‘have a go’! It took for ever and eventually I succumbed to a few tears – after all I have been through – pathetic, but you can probably tell that I was feeling a bit sorry for myself!

When I eventually emerged from the room Zig was there to do a bit of comforting, which I think caught him a bit off guard. Anyway…I got my stitches removed from where they had taken out my line, very straightforward, and my name was called to see the consultant.

Good news though! My CT scan is all clear, no sign of any pneumonia, hurrah! So I can stop taking three of the drugs and the cyclosporine. Now Jane’s immune system can finally take over! I hop up on the couch to have a thorough examination of my whole body as he is looking for any signs of graft versus host disease which can show up as a pale rash, and shows Zig the signs to look for on my back. I know I must not be ungrateful as I am getting better, but I am so sick of being pulled about and looked at! (At least I now only have to go for a routine check over every other week unless I start feeling anything wrong!)

We then asked a few questions:
Q: ‘Any chance of a glass of red with a Sunday roast?’ A: ‘Not for a while yet.’
Q: ‘When can I go back to work?’ A: ‘Not for at least 6 months.’
Q: ‘Can I eat salad yet?’ A: ‘Only if it is thoroughly washed in boiled and cooled water then dried.’
So I didn’t bother asking if I could go to The Honey Club on Brighton sea front for the night!!

After all that we go down a floor just for me to be shut in a tiny room where I have to inhale Pentamidine through a plastic pipe for 20 minutes. I really hate this procedure but it is to prevent PCJ (pneumonia) lung infection and I have to do it every month!

On our way back to the car, we picked up a Hot Chocolate from Costa to cheer me up and… the icing on the cake… that was bloody cold!!!

They said the recovery would drive me nuts, and they’re not wrong! 🙂

5 thoughts on “Frustrating, but still on the up!

  1. Oh God Lucy – it all sounds like a f**king nightmare (apart from the good results which are obviously the most important thing!). Think I would be a total basket case by now. Wouldn’t you think they would put the TOP needle guys in that particular area where it’s obviously fairly common for patients to have weak/thin veins? Anyway, a shame you don’t get to have your glass of red just yet but it all sounds to be pointing in the right direction. Well done you……….and it’s ok to cry now and again!! Xx

  2. You are doing amazingly well Lucy…. So much to deal with and put up with (dodgy blood takers!), but you still keep a positive attitude about everything. The results are fantastic, just so frustrating that the recovery procedures are so arduous. The salad option doesn’t sound too appetising just now but hold on to the image of that first glass of red! Xxx

  3. Just found your latest blog Lucy…..you know how dim with are with this technology!! I can understand your frustration and your ‘fedupness’ but the results show you are getting there. Keep thinking of this time next year when you will be back to normal. It is a helluva lot to put up with though, but I am sure it will be worth it in the end! loe from us both, Jude and Gibbonsxx

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