Feeling so helpless today, don't know what to do!

1 minute read time.

Sunday 5th June, 2011

John's been feeling ill for a few days now and it's not getting any better.  The biggest of his problems is dry retching/heaving.  Every time he stands up he gets the urge to be sick but nothing comes up except a lot of clear fluid.  It's wearing him out and the anti-sickness tablets don't seem to be helping.

Another problem is that he suffers from constipation which makes him very uncomfortable.

He also has a lot of pain and spends most of the day either lying on the bed or propped up on the sofa looking like a little ghost.  He's lost so much weight that I'm almost afraid to touch him and he's very wobbly on his feet.

I couldn't stand it any longer when he started heaving again this morning and decided to try to ring somebody.  We're waiting to be assigned a Mac Nurse but haven't heard anything yet so I tried NHS Direct.  The recorded message said that they were extremely busy and there might be a four hour waiting time for somebody with experience to phone us back, so I gave up on that one and phoned the Oncology contact number, even though he's no longer having chemo.  (We will be seeing the Registrar next week for the results of his CT scan after the last bout of chemo.)

I listed his symptoms to a young nurse who took notes and said she would phone me back.  So here we are waiting!

Not sure why I wanted to write this down but it does help to get it off my chest.

Madge x x x x x

Anonymous
  • FormerMember
    FormerMember

    Madge, if you're unhappy and they don't get back to you soon could you just take John into A & E.  There is just no way he should be suffering pain.  I can't believe you have no direct contact to someone who can help you if, and when, you need it.  If his anti sickness aren't working they need to try changing them as there are lots of different ones.  If he's suffering with constipation they can give him something that will help.  It makes me so angry to hear how much he is suffering and how you have no support.  I realise now how lucky we were with mums support network.  I think since diagnosis she only really suffered pain for around a week until they got her meds sorted.  Her constipation and sickness were dealt with promptly and her oncologist and specialist nurse told me mum should never be in pain.  Any time she was I contacted them and they sorted it.  I really hope you can get John some pain relief soon.  Sending you both love and hugs.  Caroline XX

  • FormerMember
    FormerMember

    Or what about your emergency doctor ? I really feel for you. Insist on some help and if you have no joy def go to A&E.

    Let me know how you get on x

  • FormerMember
    FormerMember

    Hi Madge,

    If you dont get any word back from your nurse. Take John to A/E nobody should have to suffer pain in this day and age.  All the best and good luck.

    Take care and be safe Big Hugs Love Sarsfield.xx

  • FormerMember
    FormerMember

    Hi Madge

    At one time Tom had exactly the same problems it got so bad one Sunday I phoned the oncology unit as I didn't know what else to do as our Mac nurse was away and they told me to bring him straight in even thouh his pallative chemo was finished  and tey were brilliant and got things sorted for him.

    Marianne

  • FormerMember
    FormerMember

    UPDATE

    Soon after I posted, a doctor phoned and advised that John should be taking his anti-sickness tablets regularly throughout the day instead of 'as requiered' as advised on the tablets.  He told me that he thought it was because the chemo was still in his system and that it takes some weeks for him to feel better.  Then he asked to speak to John.

    He told John the same thing but then added that some of his symptoms sound as if 'the cancer was taking hold'.  He wouldn't say any more and John didn't push him as I would have done.  He simply said that they would discuss this with us on Thursday at his hospital appointment.

    So I don't feel as if we're any further forward really.  John is feeling slightly better and he took the news from the doctor surprisingly well but I'm feeling devastated.  

    Thursday is such a long time away!!!!!