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

    Binnie, I feel so sad to read of the torment you are all going through, especially your poor mum.  take care.  Thinking of you x x  Tricia  x x

  • FormerMember
    FormerMember

    Well mum has been to the hospital today, dad made sure she went.

    She saw the top man again, thank goodness as he is always helpful.

    He diagnosed her with pneumonia and shingles. Luckily the shingles aren't painful for her.

    He has given her steroids and some very strong anti fungals which should hopefully help to clear the infection up.

    She had platelets too, but didn't need any blood.

    Her neuts are very low at 0.1, but not sure if they will go back up as she is still on the oral chemo.

    Only time will tell.

    We are trying to find things she can take to build her immune system up. So if anybody can think of things like Green Tea etc, please feel free to email me here.

    Mum feels a little happier now knowing they haven't given up on her and she even managed to eat a full sandwich today.,

    Thank you all

    Binnie xx

  • FormerMember
    FormerMember

    Hi Binnie, pleased to see your mum is feeling a bit better now, hope she continues to make good progress.  Christine xx

  • FormerMember
    FormerMember

    Thanks Christine.

    Mum has been weepy most of the day dad says. She must be feeling so low and fed up of feeling poorly.

    Afterall it has been going on since last October.  it's hard for her to see the light at the end of the dark tunnel.

    Her temp went over 39 last night and dad gave her paracetomol and then she took the steroids.

    Her temp went low today about 35. something and then 36 something. It has stabilsed at that.

    Dad rung the chemo hotline and they said it might be because she had been given steroids and then the paracetomols kicked in.

    She has eaten more today than she has done in the last 2 weeks. She has eaten cornflakes, beef & onion sandwich, cup of soup and peaches and ice cream and green teas to drink.

    I still pray that mum will beat these infections and start to feel a bit better soon.

    Hope everyone on here is ok.

    Binnie xx

  • FormerMember
    FormerMember

    Hi Binnie

    Sorry not replied - Ive only just seen ur message

    Mum just got so low after the chemo - shes 78 - and had 5 days chemo in one week

    She was vomiting and got dehydrated and she is diabetic too (since 1987) it all added up and made her really poorly - she eventually (after 7 weeks) needed 2 lots of blood

    Mums been home for a week now and altho still very low (not much energy) she is starting to eat better

    Hoping your mum is improving

    Luv Christine