About consultaions!!!

3 minute read time.

When i used to go to hospital appoinmaents with my grandad, I was the only member of family the Haematology and PIU unit staff saw.  I built good relations with them and when i took my grandad for bt's, i would talk in private with the doc or staff nurses about any concerns.  In July when i expressed my concerns about my thoughts of progression of my grandads condition (ie, he was more tired and sleepy, more unstable on his legs, he had blood spots apearing on his skin, sometimes short of breath, not eating and not being able to face food, more weight loss etc are just to name a few) to the nurse, she gave him a bone marrow that day.  When i went to collect my grandad that day he said he thought something was going on and he told me about the BM sample they had taken that day.  When we went back the next week, the nurse took  my grandad and i into a private room and she said to my grandad after plesantries "Im sorry to tell you Patrick your bone marrow results are not very good and are showing that your condition has progressed to AML."  After a disscussion the nurse asked my grandad if he had any questions.  The only question he asked is "Is it terminal" and the answer was yes.  After my grandad went back to his chair to await his BT i stayed and asked the nurse my own questions.  I asked with people who have the same condition as my grandad with the same type of blood results how long around do they have left.  She told me weeks maybe a month but thats only an estimation because some people can last a lot longer or not so long.  Because i asked those questions and my grandad didn't i kept this too myself because it wasn't my place to tell him. 

 My point is no one i know has ever been told how long they have actually got left unless they have specifically asked the question.

three weeks before my grandad died, the doc said he no longer needed an appoinment for his weekly BT and he could just turn up if he felt well enough. 

I had a private chat with nurse and because i had always told her i wanted her to be brutally honest with me, she told me the doc didn't expect grandad to be here.  He defied the odds and turned up for another 3 weeks, it was such a struggle to see my grandads determination to get to hosp and a phsycal struggle to get him there in and out of the car. 

The team who looked after my grandad all those years spoke highly and knidly of my grandad.  Dr Osborne and Sally both said he was a pleasure to know and treat.  Doc Osborne said my grandad was a Gentle Gentleman who never ever complained.

 

I miss my grandad so much, my aunt said i should have told her what i knew, but i don't think it was my place is she wanted to know the answers to those kinds of questions she should have been at the hospital asking the doc herself, it wasn't my place to tell anyone that kind of news because some people wouldn't appreciate being told and thats why i never had that particular discussion with my grandad he asked his aown question and it wasn't my place to tell him any more than that. 

I felt i had to write this because of recent discussions of what is said regarding being told how long a person has left.  It is such a sensitive subject.

I really miss my grandad 19/06/1933 - 26/09/2009

Anonymous
  • FormerMember
    FormerMember

    on 15th july tha day my grandad was told of his progression, the different options were discussed and when my grandad had his tranfussion that day the docs talked about chemo options, my grandads health issues and my grandad made the discission no to have the chemo.  He told me his discission when i picked him up that evening and even though i was devastated i told him i would still be by his side.

    The pain i felt wacthing my grandad was intense, it just hurts so much the thought that people could make up stories.

    I just wanted to share my grandads experience.

  • FormerMember
    FormerMember

    Hi Reneeshsa

    I have had the same consulations with Bert's Consultants. The answers  are the same, If he is not in remission after he gets his BM result then they cannot tell us how long as you say could be weeks or months nobody knows. It is just a case of being there and doing what you can. We can't got out as Bert is not fit enough ,  so we stay home ad do whatever he wants to do.

    The Consultants know that while I want to know it all Bert doesn't and they will not lie to him if he asks but if he doesn't ask then he wont know and that's what he wants

    Love Teri

  • FormerMember
    FormerMember

    Hi Teri,

    I'm going to keep wverything crossed for your Bert to still be in remission when you go for his consultation before his bone marrow.  It is scarey and I know you will both have your anxieties i just read your day 52, (i think it was)  57 is a lot younger than my grandad who was 76.  I hope if he has the BMT it is successful, i would keep doing what you are doing and keep stressing he needs to preserve his energies and should reconsider the use of a wheelchair, if only while he isn't stronge enough.  

    Yes when one person wants to know and the other doesn't i suppose you have to respect that. You have got a good caring heart Teri and i wish you the very best xxx

  • FormerMember
    FormerMember

    Thanks Reneesha

    He doesn't have any choice, he sleeps all day and night,

    I spend most of my time beside him knitting for our new arrival due in March, so if nothing else the baby will have loads to wear. He has looked after me for almost 29 years so now it is my turn to look after him.

    Love Teri

  • FormerMember
    FormerMember

    Hi all,

    just to say that right from the off i never wanted to know a prognosis, felt i wouldnt be able to handle it although i fully respected my partners decision to ask if he wanted to know, just didnt want to be there when he asked the question.

    He recently told me that at his last consultation (when i wasnt there) he asked the doc the question and her reply was 'i dont know at this stage'.

    I wonder if i am being a coward not wanting to know? The only problem with this is that everytime he is ill (as he is at the Moment) i am constantly bracing myself and thinking 'is this it?' - as i am sure he does. I think the only way to deal with this is by focussing on a step at a time and just going with the flow so to speak ie if he he feels ill we have a bad day if he feels well we have a 'better' day, we just dont have good days anymore. Interesting subject, i have asked myself 'am i a coward' but then i think no im just human and just trying my damnest to  cope with living with the blight of cancer every day.

    Take care all, stay positive, Julie x