Coping with others’ Best Intentions

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Hi all,

I have Recurrent Womb Cancer (returned after 4 years in perineal area). Today I’ve had my last cycle of chemo (6cycles Paclo-Taxol combo) and I’ve had fabulous support from friends and family. My results have been good - CA125 down from 4,000 to 48 so far and  at halfway scan all tumours had shrunk. But I know it’s incurable and will return.

the issue is my wonderful supporters are making noises indicating they think this will be it. I’m “beating it”. You’ll have heard the language- “kick its ass” - “fight on “ - “thrash it”.  I feel like I’m raining on their parade reminding them that this disease is incurable. And that’s putting pressure on me that I could do without. 

How do I others cope with this please? 

  • Hello GreenCliffLady, a warm welcome to this group - a group full of people with humour, a love of reading, singing, crafts, travel, popping down the pub, a love of cake....! I don’t have personal experience of friends and family saying those comments to me (which might be unusual but that’s my situ) but I always see in the media, ‘battling’ cancer and they don’t apply that word to other illnesses.  Sometimes people don’t know what to say and it sounds like you have a wonderful and supportive group of people around you. Perhaps let your friends and family know that you are feeling apprehensive about finishing treatment and need time and space to process it. Best wishes to you xxxx.

  • Hi GreenCliffLady

    Firstly, Amazing drop in ca125! Fantastic that tumours have shrunk!

    I have similar comments, I get told how brave I am too. I find this odd because I do not see any other option but to face it and take the treatments.

    I let the comments wash over me, I take in what I need and disregard the rest. People that have not faced this disease, or had close proximity, have not had to hear hard facts and sift through them.

    I remind myself they want to wish me well and try to make me feel better. We know the truth, we know this is a complete sod and will do whatever it bloody can to take over. The science is trying it's best to fight it, we are the containers...(insert laughy face).

    I wouldn't want any other support network, but at certain times it can be draining. When I get to that point I come back to this forum and talk to my friends that have been through this horror. 

    Hope you have the best possible day you can today. Here's to CA125 shrinking to double digits and the sod being dented!

    Jo

  • Hi GCL. I agree with you 100 %. Those comments really bother me but they are made with the best intentions so I forgive them. (Usually)

  • Hi GreenCliffLady, I know what you mean, I look very well and can still do most things my self. When I say I'm stable some people think I'm over it. You've put up a good fight and beaten it. I just smile and walk away (on a good day) on a bad day the reply often sends them away lol. They mean well but have no bloody idea how there off hand comment's  drive us made. I hope your CA numbers continue to drop, just shows your treatment is doing its job. Oh by the welcome as you can see we all no what your going through. We are a friendly bunch, very supportive and look forward to chatting with you.  Be kind to your self,  take care xx

    Moi

  • Hi  

    Great news that you've had your last cycle. I'm sorry to read that you feel you are raining on your friends and family's parade. I have a similar type of situation with some of my family. I am currently stable after treatment and now all mention of cancer, treatment, recurrence etc is basically ignored or brushed off. It's as if cancer didn't happen or that it's all finished with now, the end. Which is probably not going to be the reality. I think people don't want to think about our mortality as therefore it means they don't have to think about theirs. 

    I don't know what the answer is but all I can do is speak my truth whether that's hard for them to deal with or not. As long as I am facing facts and protecting my boundaries, other people can and will, think what they like. A comment I remember from someone close when I was diagnosed with cancer was - I can't accept it. Where do I go with that one as this is my life and my reality? 

    The biggest change in me since having cancer and counseling etc is the realisation that I can't change anyone and I don't let their reactions affect me. It's mildly annoying and sometimes beggars belief but nothing impacts me like it used to. Protect your peace.

    A x

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