Please help me

3 minute read time.
Please god help me and my mum. I have just rung Christies hospital and was worried as mum still keeps getting a temp about 38.7. It goes back down again with paracetomol for about 9 hours and then it has started being about 6 hours or less. I spoke to a HTU registra and she said your mum is on pallative care as we can't do anything else for her. I said what about the trials she can go on. But she said she can't have intensive chemo yet as it will kill her. Also there isn't any trials available yet. She said mum and dad had seen 4 doctors on friday before she was allowed home and got told to put their finances in order as mum was going home to die. I was in total shock as I didn't know this. I asked if she was sure and she said give me 5 mins and I will ring you back. She rang back and appologised as she thought I knew mum only had about 2 weeks or so to live. She did say if mum can get rid of the infection and she can hang on long enough for the trial, then she can be treated. On friday when she left the hospital her platelets were still ok, her oxygen, blood pressure etc all fine. But mum has had two nose bleeds the other night and they said it could be because hasn't any platelets now. Her eyes look a bit odd, but I can't explain what I mean. She can hardly eat even though she feels hungry, she just can't face food. Dad has bought her a blender today and we are trying to come up with some simple recipes to try. Mum is a fussy eater, so it's a problem. He got her some Frijj strawberry milkshakes and quite likes them as the build up drinks they have given her make her want to throw up and I think that is with all the smell of the vitamins etc. Mums temp had been ok for 9 hours which was getting better yesterday, but then this morning she was up to I think 37.6 so dad bought some soluble paracetomols which brought it down. We went to see them today and mum was watching the tennis and shouting at the TV as usual giving her support to the players. We were there about 4 hours or so and before we left , mums temp was spot on at 36.5 ish. We put cold compresses on her head. Then she started coughing just as we were out the door and was sick. What we want to know is has she defnetly got an infection. They took 3 days to diagnose it and she has been given millions of tablets for it. Plus she is on 3 lots of chemo which stabilise her blasts. But they took some of her blood and tried to culture it, but nothing grew, so that was odd as it should have grown something if she had an infection.... She also had been given tablets for shingles which she didn't need, so the doc rang yesterday and dad told him all about the tablets mum was on and he took her off 6 tablets then. He also mentioned there is a case of flu there at the moment, and when dad asked if it was swine flu, he said he thought so. When I spoke to the registra today, she said it hasn't been confirmed yet. But mum should be ok as she wasn't in the area where it is. We are all living in hope, mum feels so weary, she said she can't face travelling 1 hour in the car for when she has her bloods done. But I told her she must do as they will give her platelets etc and see if her supposed infection is growing. Last week, they said it was clearing up a bit... Sorry if this is all muddled up, I am just speaking from my heart as I am scared. xxx
Anonymous
  • FormerMember
    FormerMember

    Hi Binnie, I'm so sorry to hear about your mum's situation.  All the uncertainty regarding infection etc must be horrendous.  I hope your mum begins to feel a bit better soon and that they can get to the bottom of all the sickness.  Will be thinking of you.  Best wishes to you and your family, Christine xx

  • FormerMember
    FormerMember

    Hi Christine

    Just rung my dad and he said mums temp is at 38.9 now.

    She managed 6 hours with her temp spot on. But because she was sick again, her temp has gone up again. So she is back on the paracetomol again.

    I feel so helpless

  • FormerMember
    FormerMember

    Hi Binnie

    Just try to be strong for your mum and dad

    I know that is sometimes a hard thing to do when you feel as you do having just recieved such alarming news

    My muminlaw has just been discharged from hospital after another two weeks there and was told she will not be having any more chemo as she is just not well enough following her first weeks chemo which was 6 weeks ago

    I will be thinking of you all and give my 'best wishes' for you all

    Luv Christine

  • FormerMember
    FormerMember

    Did she get an infection Christine?

    I do hope she is ok.

    Mum has been through all this before when she got pneumonia in Nov/Dec last year.

    She pulled through and eventually got told she had gone into remission in Dec/Jan.

    She then started more treatment and was in remission up until June 17th when she found out she had relapsed.

    Now the oral chemo tablets are keeping it at bay, and in fact it's dropped down from the 33% blasts.

    The doctors say they could get it down to zero again, but daren't give mum too many tablets as she is already on a lot.

    The main issue is the infection though. Mum was sick about 30 mins ago and dad said she was coughing up white stuff. We don't know if that is her chest clearing a bit, or something she ate, well she doesn't eat much nowadays.

    Or is it the tablets.

  • FormerMember
    FormerMember

    but I am thinking of you lots.

    with lots of love, Debbie xxxx