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Beating Bowel Cancer Community

General Discussion

Bear G

Really interesting article @belinda66 , thanks for posting.

We’ve seen here on the forum that we all have our own approaches to dealing with a cancer diagnosis regardless of the staging. Some like to view it as being a battle or fight while others prefer different terms that are as aggressive. There’s no right or wrong.

The article correctly covers the issue of how we talk about cancer to other people and how they talk to us. It’s great to have this formally recognised by Macmillan and it’ll be interesting to see how they progress this.

The psychological impact of a cancer diagnosis is often ignored, and I don’t think this particular aspect has been explored before.

Bring positive about our treatment is something I believe strongly in and do feel it’s made a huge difference to my results. However, keeping a positive public face is sometimes very tiring.

The importance of being able to share with others going through the same journey is so important and why this forum is so vital!

Big hugs
Bear
:x::x:

belinda66

@Bear G - interesting response. Personally, I don't think being positive makes any difference to prognosis or management of symptoms whatsoever. After all, some very positive people got cancer in the first place. Although I'm not at an advanced stage now, I find all the 'positive and battling' talk exhausting. I also don't like the implication that if only a person was positive then it would be better - getting too close to victim blame for my liking.

Bear G

Hi @belinda66
Thanks for your note and I completely appreciate your perspective.

I certainly agree with your comment that it’s wrong to say ‘if only a person was positive then it would be better’, that’s not my intention. However, there’s lots of medical data about positivity helping, that’s what the placebo effect is all about.

I personally don’t like the ‘fighting / battling’ approach either, but I acknowledge that works for a lot of people. Fighting and positivity aren’t the same thing.

One thing I’ve learned over the past five years is how different we are, how differently cancer affects each of us and how differently we all respond to treatment.

It’s entirely your choice how you take on the cancer that’s affecting you. This forum is here to help all of us, we each will identify with different people, their approaches and their posts.

It wasn’t and never has been my intention to say that anyone has to be positive, merely to share my experience that positivity has helped me.

Big hugs
Bear
:x::x:

Gypsy

I always want to say to folk that it's ok not to be positive if that isn't for you. I agree about it sometimes being a burden imposed on the cancer sufferer by those who just find it the in vogue 'mantra' to repeat- and actually, it can be quite an unfeeling thing to say and like a kick in the guts. I completely hated being exhorted to 'stay positive' and could have cheerfully smacked those who said it. No one could have been more negative than I was (and with a breakdown and clinical depression as well as cancer) but I gradually learned to be hopeful and got better physically and mental and I can manage that now- but then I have been so lucky.

Lizalou

As you all say, everyone is different, and will approach a cancer diagnosis differently. But this article seemed quite negative to me, almost implying that we should graciously accept a terminal diagnosis, with the option of dying at home, instead of exploring alternatives. (Maybe i just read it wrong, probably the article didn't give the full picture).

It must be hugely difficult for professionals to get the right balance between discussing end of life care and discussing ways of living life to the full in the meantime. Not a job I could do.

belinda66

To me, it read like there's such an over-emphasis on being positive that patients have little opportunity to discuss death and to make their wishes about their last days known.

I worked in a nursing home for years and it made me realise how little we discuss death in the west and push it out of sight. Before I had that job, I'd had nothing to do with death at all.

GD62

For me it is about living with cancer at the moment, and could not classify my thoughts as entirely one way or another, except to say that I would describe them as fluid. That is, while at the moment I am working full time and enjoy my work, and even got offered and accepted a new job last week, my application has gone in for early retirement from the NHS. Without going into it , I get a great deal of positivity from faith, whether my outcome is my demise or survival, I like to think that I have come to terms with both outcomes and just want to focus on living life each day as fully as possible.

Yesterday a woman came to see me about reviewing her depression medication, and I said lets just increase your dose and we can review it in a couple of weeks, then she said that I had lost weight and I told her that I had been off with cancer issues. She was so upset that she cried, and I ended up giving her a hug and telling her that it's just what life throws at you. So other people can find it difficult dealing with your diagnosis too.

My conclusion keep on keeping on, get the best treatment and pain relief to be comfortable, don't waste time and enjoy life for the moment.

Cheers :x:

Bear G

‘Enjoy the moment’ - completely agree @GD62

I should also say that I’ve discussed my end of life with my family and closest friends, and have made a will. I’m in the process of planning my funeral too.

:x::x:

Lynne0426

Interesting discussion as at the moment I feel I've been written off as my chemo has had no effect. I'm pretty positive in my outlook despite this but am under no illusions I will live longer for it but I will try and enjoy the time I've got. I also hate the word 'fight'. So.. we lose the fight. Were we weak,not brave enough to fight it any longer? Thanks for that!

My children are grown up ; I'm grateful to have been around long enough to witnessed that. I know many people aren't whether it be cancer or some other illness/disease. I have a grandson of 2 and another due next week, from my daughter. My saddest thoughts is that I can't expect to see them grow up.

A few years ago my ex (children's father) had sepsis and had less than 1% chance of survival. He was on an end of life path and his brothers and sisters came over from Italy. He's still around, although living with the effects of a stroke but with the 1% survival rate they were preparing for his death.

My children have already been to the point of thinking a parent is dying and I do think it's helping them deal with me. My daughter goes for counselling (trying to get me to go) I don't think I'm ready for that yet even though my chemo has been stopped and I'm in limbo. I feel 100% fine despite tumours from nodes and now spots on my lungs. I am also living for the day.

I updated my will before my major op last year and am now in the process of doing a Lasting Power of Attorney. I hope not to keel over with no notice, although I'm aware any of us can get run over by a bus at any time. Please excuse any mad sense of humour I have, it helps me cope.

I have no idea how long I've got and at this stage, don't want to know - it's crazy I feel more healthy than a year ago when I was running around with bowel cancer and blood count of 6 (no wonder I couldn't even cut the grass and was freezing cold every night ) op done, adjuvent chemo recommended. Oh didn't that change! But I will make sure my kids know what I want. I live on my own and I won't want to be a burden.

And apart from that I shall enjoy every day I can.

Best to you all,
Lynne :x::x:

Bear G

Thanks for posting that @Lynne0426
Humour is a very powerful tool too, especially after all you’ve been through.
Definitely enjoy every day!
Big hugs
:x::x:

WendySue

Thanks for posting this article @belinda66 as others have said this is down to the individual. I read a while back an article about a group of women living with metastatic breast cancer and their perspectives on managing the knowledge of not being curable. One suggested this was like living on "twin tracks"- on one track one seeks to be hopeful and proactive and on the other track there is an awareness of what the condition means and the practical implications. That captured my feelings exactly as a Stage 4 patient- I need to be on the hopeful track to get out of bed in the morning and get on with life. Yet the other track is always there in the background and sometimes brings me down. I suspect it may be difficult for medical professionals to manage the balance and to understand the subtleties for the individual patient. :x::x:

belinda66

Thanks for your thoughtful and deeply honest replies. I feel honoured to be part of a forum where the members are so open about such personal issues.

I changed my Will as soon as I got diagnosed with cancer and discussed what arrangements to be held after my death. I don't want a funeral - there is no obligation to have one, just a cremation without anyone there. Instead I'd like a service/celebration perhaps outside, like we held for a friend a few years back by the river. Funerals are expensive and I'd rather any spare money was spent on the living.

I don't see myself as fighting any sort of battle, it's just an illness. I've been on some mental health training today and it was quite useful for tips on sleep, dreams, anxiety, mindfulness and meditation etc.

GD62

Hello @Bear G

I think that is very sensible that you have planned things ahead, and all I can say is it is brave too. I'll keep you and everyone on this forum in my daily prayers as we all need some strength. Hope you don't mind and keep looking after yourself.

Hugs :x:

Bear G

That’s such a lovely and generous thing to do @GD62
:x::x:

GD62

Hi @Bear G Thanks it's just the right thing to do and happy to do it, no generosity it's a privilege :x: