Family and friends

If a member of your family or a friend, or someone else you know is living with cancer, this group is the place to share your feelings and get support.

Need to know

No. of entries: 7 | Posted on 4 Nov 2013 10:09 PM

Need to know

  • My dad had swelling in the face and breathlessness in July this year went to doc sent for tests no answer . Had 2 biopsy's  no result. But a stent was fitted for S.V.C . Been to Leeds now for  a more invasive test and waiting for results.So 12 weeks without treatment or diagnosis he was losing weight so me and my sister got him on complan he's put on a bit since then his face is swelling again . My dad does not want to know what is going on how do we find out with out upsetting him in the consulting room ? Im sure if I ask the nurse she will say well everyone is different  which i know they are but i just wanna know how long  we have as a family xx

  • Jojo,

    I am so sorry you are still waiting for more tests and results and that your poor dad still hasn't started any treatment. I think it was a couple of months ago that I first read a post by you saying he was having biopsies taken.  I can only imagine how hard this must be for you all. It is bad enough getting a diagnosis of cancer but still not having the answers the doctors need to start treatment must be so difficult for you.

    I'm glad you've managed to help your dads weight by getting him complan.  If he sees his GP he could get them to prescribe some of the high calorie drinks like fortesip or the one with added protein fortesip plus.  All these things are so expensive so if you can get them prescribed....

    If your dad doesn't want to know what is going on is he happy for you to know? If he is then he could ask his consultant to speak with you or the nurse.  She may well say everyone is different, it is true that they are, but she may be able to give you some rough idea.  Just bear in mind any prognosis is just an estimate and many people beat the odds.  

    Does you dad have a macmillna nurse? I'm sorry I can't remember if you have mentioned that before.  If he does then they will talk you through things as best they can. If he doesn't have one yet he can get a referral from his GP or his consultant for one.

    The not knowing how long is no easy to deal with is it?  That is a large part of why I try and do the "one day at a time" thing. I tell myself my husband is here with us today and for today that is what matters.

    I really hope you get answers soon,

    Hiloa x

  • Do Macmillan nurses need our loved ones approval before discussing their condition with us too? I am assuming they do?..
  • No they don't! And neither should the consultant. The Macmillan helpline can be great too on finding more out about symptoms. X
  • Thanks bexbox. Somehow feels wrong asking without my mum knowing I am snooping...I not know...nothing is easy these days..
  • It's hard and difficult. My dad didnt want to know but there got to a point when I had to know how long we had or might have. Dad said it would be like marking your birthday or Christmas on a calendar, it would always come round too soon if he'd have known. Which I think was right. Knowing is all down to your personal experience I think. You have to be ready to handle what the answer is. If you don't want to know it's not burying your head in the sand! It's taking each day at a time :) xx
  • Thankyou for all your replies It really does help when your just waiting and waiting .......... I just wanted to know to somehow organise my life ie. taking time off work , putting my dad first before anyone else ... sound kinda selfish now ive wrote it out but I feel I cant make any decisions and living one day at a time is so hard right now . I don't think my dad has a macmillan nurse so I will ask him about that thanks feel better just sharing it out there  xx jojo