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! 🙂

The weekly check up and Sir Roy.

Today has been my weekly visit to Southampton, and I am struggling to walk, lift anything, or sit down as I thought it would be a brilliant idea yesterday to do a ‘work out’, with my dear friend (personal trainer) Andrew!!!

I haven’t done any exercise, other than a few walks for a couple of months and am very weedy!! We didn’t do any aerobic stuff as didn’t want to pass out, and as my lung capacity is still a bit crap, so all lunges, squats, sit ups with a lot lighter weights than normal and for the first time in weeks I felt fantastic afterwards and am loving the pain!!!! Anyway didn’t dare tell my consultant what I had been up to, so hid my pain as best I could (see pic below, me walking with determination…)

The waiting room is packed with everyone that has had exactly the same procedure as me and we are all at different stages. Zig always comes with me and we have turned the visit into a bit of a laugh, as it is sooooo serious and everyone looks so miserable. Zig pointed out ‘do they not realise the NHS has spent 140,000 on getting them better and curing them, so you would at least think they look happy’!!!!

On the downside we asked if we could go to a friend’s birthday dinner on the 2nd November in a fab hotel and the answer was a BIG FAT NO! On the upside my line is coming out next Thursday and have been assured it will be easier than when it went in… which was 24th July when I cried and had to be consoled with a Costa and a Crunchie!

By the way, I watched the Pride of Britain the other night and just want to mention: I wouldn’t be here without this man!!! Thank you Sir Roy – from me and millions of others xx
Sir Roy Calne – resopnsible for the development of Cyclosporine