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

    Hi Julie

    You are most certainly not being a coward. We all have to deal with it in our own way and just grab the better days when we can, and hope for lots of them. I notice that your name is Positive lady  have always been. I ask this because I have all the way  but don't seem to be able to this time round

    Love Teri

  • FormerMember
    FormerMember

    Hi Teri,

    positive i am definately not, not at the moment anyway, think i was to begin with but as my partners illness has progressed i just dont feel positive anymore, more a feeling of living with dread. I am a bit of a control freak and i know this one is out of my control.

    Julie x

  • FormerMember
    FormerMember

    hi Teri,

    Thats exactly how I saw it with my grandad, he had been there all my life as a father figure and best friend and i felt me caring for him i was repaying him for everything he has ever done for me.  Its really hard but we do these things out of love.  The Mac nurse once said to me there is a difference between caring and being a carer.  Has Bert got mac nurses and DN visiting Bert?  Is he eating ok?

    Hi Positive Lady,

    I think it is upto personal choice, I don't think you are being cowardly you just choose not to wish to know, everyone has different ways of dealing with things.  We all wonder how can we possibably deal with this, but it is amazing after the initial head crunching shock etc, you have no choice but to deal with it and you find the strength, god knows where from but you do and it isn't easy,  the feelings of being powerless.  You have just got to be there best you can and take each day as it comes.  The good days, the ok days, the not so good days and the bad days.  Have little goals to achieve like my grandad did. xx

  • FormerMember
    FormerMember

    Hi Positive lady,

    I'm really sorry you are feeling this way,  It is very difficult when you are faced with this situation,  The Palliative Community care mac nurses are a good team working alongside hospice at home, ocupational therapist, district nurse, social services and gp together they ensure the best care for my grandad to enable him to stay at home comfortably and painfree.  Hopefully your hubby will have the best care to ensure he is as comfortable as possible.

    wish you well

    Reneesha x

  • FormerMember
    FormerMember

    Hi Reneesha

    He is eating like there is no tomorrow, I know they told him at the last BMT meeting to try and put some weight on which he did. However, he lost most of it when he was back in but that took him back down to his normal weight, So he is on a mission to do the same again .

    We don't  need the DN's at the moment, and as they are my colleagues I know they would be here in an instant if I was to ask but really at the moment there is nothing for them to do as he is sleeping most of the time anyway. I don't know if he has a Mac Nurse, if he has we have not seen her for months as we have only been seeing ward staff and clinic staff.

    I will find out on Thursday when we go to the clinic

    Love Teri