Karen's Catch-Up #2

2 minute read time.

All too soon it was back in for the 3rd and final dose of IVE which means being hooked up to a drip from Wednesday to Sunday. Just a case of sitting it out really - no sickness a bit of nausea at first. It’s just a slog really because they have to test your urine for blood all the time and you’re woken up for observations and changing bags over during the night. By the end of the week I’m just really tired. So nothing to whinge about at all really, haha. I was doubly pleased that they’d got it all in through my Hickman Line - even though there was no real reason for it not to go in J .

The bad news was that on the Friday (whilst chemo still being administered), doc said neutrophils had already started dropping and I probably wouldn’t be allowed home. Now I’ve been more in than out of hospital since beginning of September and I really look forward to getting home and seeing everyone. I’ve also decided to hate the food, haha. Breakfast is fine. Dinner is usually OK but the lunches are pretty dire. Anyway I resigned myself to that within a couple of minutes and was OK. Good news was that on Sunday my blood had risen so I could go home til Tuesday. Went back and blood test showed they’d risen again so I could go home til Thursday. Result! Thursday they’d crashed as expected so I was admitted and here I am.

So it’s a case of sitting it out and hoping that I don’t get an infection. There’s some ominous-sounding sniffing going on outside the room from the staff, haha. The nurses all had their swine-flu jabs the other day so all were working with sore, red arms. Haemoglobin had dropped a couple of days ago so more blood needed. They can only leave a bag hooked up for 4 hours and only half of it had made it’s way in so I had another bag yesterday which all transfused. This just ’happens sometimes’ apparently. My line is getting stingy with giving blood in the mornings so I’m still having it taken peripherally some days. Trouble is my veins are bored now and not co-operating - 3rd time lucky again today. Neutrophils are 0.1 today so haven’t quite bottomed out. Platelets are down to 80 as expected. Haemoglobin back up tho so transfusion worked.

I think I might be meeting the radiotherapy doc this week to talk about that - depends on the scan in a couple of weeks but I think we’re all expecting that to be the next step. Hopefully it’s reduced enough. All very exciting eh?!?

Off for a sleep (I hope) - stayed up way too late last night even for a Saturday Night J .

Love karenx

Anonymous
  • FormerMember
    FormerMember

    Hiya Karen nice to hear from you again on here!  When i was reading it it was quite strange you talking about hospital and the food etc as its mine too.  Eh i thought the food looked lovely as i couldnt eat it, still cant eat normally, throat and mouth still sore and using the peg all the time, getting very bored, which is maybe a good thing in a way, havent ventured out at all stuck in the house, apart from visitors and daughters, im up to getting dressed for half a day now with make up and lips on ha ha dont know who the hell is coming round, but you live in hope lol!!!!! well it makes me feel better even just to answer the door to the avon lady or window cleaner.  God has my world got to this i still find it so surreal i keep saying right you up there have punished me enough now make me better quick before i end up insane!!!!!  You take all this so well in your stride Karen dont you?  You must be more laid back than me, i know we dont have a choice but i tell you since leaving hospital i ve had some dark days, tears and why me etc., i ve picked up a bit but its sooooo hard isnt it???

    Anyway nice to see you on here and keep me updated of how ya doing, you never know one day we may even meet up for coffee when i can swallow again lol

    Love n Hugs

    Jill

    x

  • FormerMember
    FormerMember

    I think you are doing brilliantly Karen, I'd hate to have spent that much time in hospital.  I only stayed the night after brain surgery and was home by the following lunchtime - never been able to keep still and take it easy ;)

    I hope your blood co-operates and everything goes like clockwork.

    Debs xx

  • FormerMember
    FormerMember

    Your IVE experiences sounded very like mine. Such a relief to go to the loo without an infusion pump trailing behind you. Fortunately, 2 doses of IVE got me sorted.

    Hope the rest of your treatment goes well

    Adam - reformed lymphomaniac

  • FormerMember
    FormerMember

    Jill - it's so good to see you on here. I had a sneaky look on the board to see if you were still on the ward - glad you weren't. Really hope thigs are easing up a bit - can you talk now? I'm sure your girls are looking after you. Somebody told me that bored is a good sign - means you're starting to feel better, haha. glad the lippy's made a comeback. I'm the same in here. I always put my hospital version of 'day' clothes on (unless I'm hooked up to something) just makes me feel normal. But if I feel crap I'm not reaching for the mascara, lol. The whole thing can be a real slog can't it - I'm really missing the kids and I know they'd rather I was at home so I've transferred all my pissed offness to hating the food. Even though you can't wait to eat something properly again a hospital baked potato ain't it, believe me, haha. A coffee would be great when we're through all this (it'll probably taste weird tho!). The lads were playing in Billigham again last Saturday at The Station - won't be too long before you're out again, eh?

    love karen x

  • FormerMember
    FormerMember

    Debs - thank you and that's really good coming from Dynamo Debs :)

    It's monday so I can say I'm going home this week (hopefully). In isolation, I just go into my own little bubble of music and DVDs and books or whatever and have a sort of routine going which divides the day up nicely (most of the time!).

    xx