How do people plan?

Hi All,

I'm new to the board. Diagnosed Stage 3C High Grade Serous Epitheleal Ovarian/Peritoneal 5 months ago. Inoperable, Platinum resistant so now on Caelyx palliatively. I feel well at the moment but have had one bowel obstruction already.

I have lots of complications and issues that the doctors seem to have no clue how long I have to live. To be honest, I haven't asked him yet and I intend to on Wednesday but I'm not sure he really knows. The consensus seems to be that I might have two week, two months, two years, two decades, not a clue.

My question to you lovely ladies is this: how do you live and plan with the unknown? Do you plan for twenty years in optimism? Do you live each day like it could be your last? I find it difficult because if this really was my last day there is no way I would do the dishes. But if I have two years, well then the dishes probably need to get done. Does this make sense?

Naturally I would love some certainty (or maybe I wouldn't) but that isn't going to happen with most of us so I guess some hints on living with the uncertainty would be wonderful.

Thanks and keep on living life!

Robyn

nfoster

Comments

  • Hi Robyn

    wow that must really be confronting for you.


    im not really sure how to answer that. I’m not in the same position as you well I guess I’m not we ever really know when our last day might be .


    i think you need to do what feels right to you


    there are some great resources

    • resilience kit
    • the support nurses at OCA- I’ll find the contacts and post for you.


    I’m sorry I don’t think I can be of much help. But here to chat if you need


    Naomi

    Rob
  • Hi Robyn,

    Not the kind of news anyone of us want to hear, however you sound in good spirits. In answer to your question 'How do you plan" I don't think any one of us have a plan. I know when I was diagnosed I made sure that my will & accounts were in order and that someone in my family know all my passwords etc to deal with any complications that may have surfaced as were not always in the best place at times. As you probably were aware of when you had your operation for your bowel obstruction. I also hope that you are having some counseling to deal with the "little devil" on your shoulder. I totally understand your comments re the dishes, its hard living with uncertainty you say you feel well at the moment. Take each day as it comes, welcome the day and be thankful, do things that you want to do....if your able. One thing that I have come to terms with is that we are never the same person and to be kind to yourself take each day as it comes, get out of the house . I also do Meditation and Mindfulness it calms the mind and gives some inner peace it's easy to learn. I wish you the best and you will find lots of help and information from this site, also talk to your oncology nurses they have a wealth of knowledge as well.

    Chris

    Rob
  • Hello, Robyn. Yes it's awful when they can't answer any of our questions. We have to make it up as we go along! I was diagnosed exactly 3 years ago with 3C. I had a radical hysterectomy and then chemo. When that was over I dashed to the UK to see a newly born great niece and had a lovely trip to the Isle of Arran and Portugal, knowing I may not get the chance again. I had nine months free from treatment, but then had to do more chemo (different recipe). Then, last September, I volunteered to go on a clinical trial for olaparib which has had some success with people with BRC6. Of course I am too rare to have that. I have some other BRC they know nothing about yet. At least it is in tablet form. But just now I've had the bad news that it isn't working and I have developed some lesions on my liver. I had hoped it would suppress the ca125 cells.

    So now I, too, am in a kind of limbo, as I can choose to stop the treatment. My oncologist is loath to put me back on chemo (as amI!), so currently I am on "Wait and Watch" mode.

    I do try to just enjoy each "healthy" day, as I generally feel OK and am "clinically well". I enjoy the small daily things. However, I did ask my family to visit on the long weekend (from interstate) to discuss the "family treasures". That made me feel better. I made sure they also had a good time! Lucky we did that before the new virus restrictions.

    I am getting a bit sad and anxious. Last night started thinking about funeral arrangements! I do walk regularly, read a lot (pure escapism) and sometimes watch Netflix or go to a movie and U3A lectures. We had a busy social life, but as you know- all a bit restricted now!

    Good luck!

    ☹️

  • I’ve just registered here! I’ve been diagnosed with recurrent low grade serous ovarian cancer in January 2020 now considered Stage 4. . I was last diagnosed in May 2007 after radical hysterectomy and bowel resection then Stage 3C - my diagnosis from then has been changed from moderately differentiated ovarian cancer to low grade serous.

    The cancer is highly reliant on oestrogen and I am 4 weeks into using Letrozole (oestrogen blocker). I’m now waiting, in 2 months, for a CT scan to see if the medication is working.

    I feel like I’m n a no mans land at the moment. Still in recovery (7 weeks post) from emergency surgery for bowel obstruction. I had bypass surgery for the bowel but there was too much cancer in my abdomen/peritoneal bag to remove without doing too much harm.

    I’m 54 married with three darling now grown daughters who are 22, 25 and 27. I always feared recurrence but I never thought I’d be in a position where my life would be (again) threatened and the joy I had seems out if reach!

    LynnatCamelot
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