Forum Discussion

Dawnc's avatar
Dawnc
Member
7 years ago

Quality of Life or Quantity they asked me?

Hi all, I was quite set back by a hospital staff member calling me this morning to ask me some important questions regarding my three appointments at hospital tomorrow. First one 11am Radiation Dept. Next 2.45pm Post Op. my surgeon then again 4pm back at Radiation DeptI was first diagnosed in 2014, then again February 2018 another tumour grade 3 etc( can see my previous post) The question she asked me was. "Do I believe in quality of life as against quantity of life" It threw me as I took it to be as I was now 70 were they considering me to be past certain treatment and choosing more deserving or younger patients?
I did choose not to have any treatment after my first WLE in 2014. But surely because I chose that the first time some 4 years ago surely they dont expect me to go that route again as things are much much worse now.
My question to all you lovely ladies who have gone through this, or going through this. Is it rough to start at 70 should I consider milder treatment as I have seen both my mother & sister suffer terribly and still pass with no quality for the last couple of years of their lives. I really don't want to put my two daughters through this. Its a memory I have never forgotten seeing them go as they did. It could have been easier I know.
So sorry to ask such a serious question but I go in tomorrow for the final discussion with one of my daughters, I need some serious advice. Sadly I have a twin sister to think of as well. Thanks in advance love & hugs to all on here. Dawn x
  • Dawnc's avatar
    Dawnc
    Member
    7 years ago
    @MoiraC Yes I am taking one of my two daughters. Both my girls & I have had the quality of life as also quantity of life talk so both have said whatever I choose they will respect. I love them for it so much it makes things so much easier to listen objectively to everything said or advised & for both of us there to decide together. I love my girls I really do & they know it. One is 48 in September & one is 46 life has been good for me in many ways, I am grateful.
  • MoiraC's avatar
    MoiraC
    Member
    7 years ago
    Hi @Dawnc - as others have said that is a tough question and to be asked on the phone. It sounds like your planned notebook and lists will be really helpful. I do think it is important to know treatment has changed so much since your mother -this msybe also worth adding to your list as I notice you are concerned for your daughters as well as yourself. I hope you have a good discussion with dr -are you taking someone with you? Go well x
  • Dawnc's avatar
    Dawnc
    Member
    7 years ago
    Thanks ladies for all your input. I have done a lot of very thoughtful thinking this afternoon & have decided to make a list of positives & negatives for treatment & for not having treatment. I will write it up tonight & take it with me tomorrow I wont bring it up unless I feel the need to during the discussion. I had four very very good years from 2014 to 2018 without ANY treatment at all! Maybe I was lucky, but maybe just maybe four more very good QUALITY years would be better than five, six or seven years of chemo, radiation, hormone treatment & all the symptoms & hospital appointments that will go with it might be a healthier option also? Who knows? I have a big decision tomorrow. May God & all his little angels be with me then.
    God bless you all.
  • Mira's avatar
    Mira
    Member
    7 years ago
    That's a tough one!  I agree that they could have asked it in a more sensitive way though, if someone is going to ask me that I want them to be looking me in the eyes. 

    I've thought about talking through an advance care thing with my GP, even though I don't have mets or anything.  I'd like to, but I haven't been brave enough.  I honestly don't know what I'd do.

    Good luck, sending hugs your way. 
  • Zoffiel's avatar
    Zoffiel
    Member
    7 years ago

    I think it is a reasonable question, but the delivery was a bit off considering it was a phone call and you do not know what will be recommended. Advanced car planning is something that most of us neglect but it is a discussion we should all have when, or before, things start to go screwy. Some people want to do everything they can and will accept any treatment, regardless of the effect on their quality of life. Others would prefer not to.

    One thing I would recommend is keeping any decisions about accepting or refusing treatment (assuming that is what it comes down to) to yourself until you are fairly sure what you want to do. Family/peer pressure can be intense and can make it very difficult to follow your own path if they disagree with you. Mxx

  • kmakm's avatar
    kmakm
    Member
    7 years ago
    It doesn't sound awful to me. We all consider these things when contemplating our treatment. In my opinion it's a basic human right. You have to do what's right for you. I agree with @steplightly. Take a notebook. Write things down. Don't put any unecessary pressure on yourself, and be kind to yourself. What works for you when making difficult decisions? Long walks? A swim? Lengthy chats with friends and family? Research? We all have our processes. For me it was a lot of walking and cogitating, and writing a pros and cons list basically. The actual act of writing stuff down was very clarifying. A counsellor might help too. Be gentle on yourself Dawn! K xox
  • steplightly's avatar
    steplightly
    Member
    7 years ago
    Hi @Dawnc What the?? Choices we make are based on the best information we have at the time and the circumstances we are in.  So hard to be back in this space for  you again yet alone being asked that question prior to any appointments.  I can imagine your mind would be spinning and as there are no guarantees with any decision it would feel perhaps a bit like Russian roulette.. With what you have experienced with your family it would be a very weighty question to add to your new load. Don't think I can offer any advice except to listen, arm yourself with a notebook and wait to see the outcome of the appointments.. it will give you some sort of game plan perhaps... hugs. xo
  • Dawnc's avatar
    Dawnc
    Member
    7 years ago
    @kmakm I think it may have been a standard question but it was spoken in the context of I had decided with no treatment on first diagnosis in 20114. So a bit confusing. I could be over thinking as I am stressed at moment. You know how it gets.
    Even though I am considering quality over quantity at moment as awful as that sounds.
  • Sister's avatar
    Sister
    Member
    7 years ago
    I don't think that's a question you can answer without knowing what is prompting it and while it might be something you need to consider, hardly appropriate in a pre-appointment phone call.  As to what you are able to cope with at 70, I think that will depend on the treatment considered, your general fitness, etc.  I'm sorry - this is not really what you were asking but it seems so bizarre for you to be presented with this in this way.  
  • kmakm's avatar
    kmakm
    Member
    7 years ago
    Gosh Dawn, I'm not surprised this question has set you back on yiur heels! That is a very meaty query indeed. Did you get the impression it was a standard question for someone your age and facing treatment decisions, or an off the cuff query?