The (not so) secret diary of a 40 year old with incurable cancer....: Here we go again....

Chemo update

Bognor last weekend (see PPS at end of blog)

Tim and I have been to see Dr A today.

Thankfully, despite looking hideous, my fingers are much better (I'd say about 80%)... Well I can open a tin of beans*/beer* (*delete as appropriate).

The 'altered sensation' (a cross between numbness and pins and needles) at the end of my fingers is loads better, and apart from my left thumb, it doesn't really feel like my other nails have been trapped in a door.

To be fair, they look a lot worse in 'real life' - really black and horrible

Dr A felt my left thumb to check for any infection, as your nailbeds can get infected quite easily, and he said if there was any pus or oozing to let him/the team know and they would get me on some antibiotics! Nice.

He said that he was happy to put me back on the chemo but was going to give me a reduced dose so that the pins and needles don't come back as badly. He also said to keep the chemo nurses up to date each week so they can monitor the situation and if I have any concerns to get in touch with him (which was really nice).

He asked again how many treatments I'd had and when I'd had a break. I reminded him that it was 12 and that I hadn't had a break prior to my finger issues. He looked at the previous dose that Dr P had put me on and did say that he had found that Dr P had 'stretched' people in terms of dosage. So I think he was saying that maybe I should have had a break before the damage had started. Oh well.

Then Tim asked, all being well, how many more sessions I was likely to have. Dr A said it was likely to be 'about' another six (so the original 18 discussed). He said some people only ever have two or three treatments as the side effects are terrible for them straight away and can't be tolerated, but then he knows of another patient of Dr P's who has been on it weekly for THREE YEARS as she doesn't get any side effects from it at all. Wowzers. But he said 18 is about average, and there is a possibility of stretching it to 21 or 22 but it's all about the 'quality of life' as I mentioned in my last blog.

There was then the discussion about bloods. I said I'd had them done yesterday by the district nurse and he checked them and then 'oh'. 'Oh', is not a word I like in this context!! He said my (pesky) ALT levels had risen again. Bloody ALTs - they have been the issue all along. This is really worrying me if I'm being honest as I'm concerned that they are the ones that will just keep rising and rising no matter what treatment I'm on. But he did say, 'well we've just had another CT scan and that was ok' so he is happy for me to carry on with the treatment and we'll keep monitoring the liver levels as normal every week.

So the fun continues tomorrow with chemo no. 13. I have to admit that it's been really nice to have a few weeks off as I've generally felt much better, but on the other hand, bizarrely enough, I want more chemo to try and get these tumours shrunk as much as possible!!

Thanks for sticking by me folks.

This is proving to be pretty tough all round!

Love from me. xx

ps. Thanks to Marilyn for coming over to say 'hi' to me at the front of the hospital today while I was waiting for Tim. It is so nice when people recognise me from my blog and I just hope that it is insightful/useful etc etc for you all. xx

pps. Tim and I did get away for a few days this last weekend - we stayed at my wonderful friend Anne's house in Aldwick near Bognor. We had a lovely time, just to two of us, eating lots of chips, walking on the beach every day and just taking time to be away from the hum drum of all this shit.