Friends and relations responses to cancer diagnosis

[wotnowyousay]

I'm trying to understand why I find oh "that's good, small percentages" etc so irritating and unhelpful. Or similarly with other binary positive considerations about my only (and I mean that) stage one small breast cancer.

It might be me. I had to come off hrt as part of the treatment and I had slump a few weeks after surgery.

I'm not saying "it's" bad by any means. Im very lucky to not have lymph node involvement in breast cancer and that its hormone positive so can be treated with radio therapy and the anti hormone drugs for 5 years. I get all that.

I found the cancer nurse's suggestion to "go out and celebrate" on receiving the excellent news that it had clear margins, not helpful. I have friends who've had cancer 3 times and are living with life long chemo. I know I'm lucky.

Am I feeling like it's minimising it? Or aibu?

I had a terrible time in perimenoapuse and wasn't through it. To be told to come of. Hrt and take a drug that might make me feel as bad, plus radiotherapy, is fucking hard for me to consider.

@TheYearOfSmallThings yes I think that's it.

One of the things about all this that bothers me is the whole "fighter" thing.

I already have a significant neurological problem which has me in a wheelchair for long distances, means I can't work, neuropathy, loss of balance and chronic fatigue. I've worked pretty hard at not being a "fighter" of this as there's no bloody fight, it just is what it is and I have to live with this.

Because it doesn't matter a shiny shit whether you're fighting or not, it is happening to you and I really don't want to think people are more worthy of a cure because they "fought" cancer.

Sorry, getting off hobby horse now!!

It's not for your counsellor to tell you what you should or shouldn't say, do or anything really.

The whole coulda, shoulda, woulda is largely redundant anyway. Your cancer, entirely up to you what you do, say, think, feel.

@weegiemum I refuse to engage with the whole fighter/battle thing. Those who have been stupid enough to use those words around me got short shrift. Ditto those who have called me brave. I'm not, am just trying to get on with cancer and not let it control me or how I live my life. (Easier said than done at times). What I hate about the whole fighting cancer thing is those who have succumb/died? Does this mean they didn't fight hard enough? Urgh, such bollocks. It's offensive too. These words need to die a death and never been used with regards to cancer ever again.

Oh that's really shit. I've been a bit of a fighter my whole adult life. nothing as challenging as you've experienced. chronic illnesses do take a bit of work though and I was very unwell before diagnosis.

I've always seen it as a useful experience as I had to push through stuff and work harder at some things peers didn't have to which has given me grit and flexibility. It made me more determined and I did well in my career. But it's not always been easy by any means. And I used to reflect at least it wasn't cancer....

right now I'm exhausted and just plain grumpy.

@doublec - she zoned in on the fact I was using should a lot. And maybe look at when I was saying it this week if that makes sense?

@doublec you're right, that language is quite offensive.

I feel I'm fighting to keep symptoms of menopause and side effects of either no oestrogen or tamoxifen under control in order to not let it dominate my life though. Paddling very hard under the surface.

And to be able to be a decent mum and keep my job.

@wotnowyousay

Oh, I get the context, I used to see a counsellor for several years and she would focus on various words I used a lot. Lost was my main one.

While I understand why they are drawing your attention to it, for me, I see it as a way of making you realise that it's a pointless exercise, that is to talk about that you should have done x, y or z, when you didn't, or you did something else entirely. I guess 'i wish I'd have done x, y or z' is a similar thing, and something I made myself stop saying and thinking many years ago.

The thing is though, a lot of our 'should' are out of our hands. Much like cancer really, as well as other people's reactions.

Instead of saying should, make it I am, or I will, both of which are positive, and the later, an action.

You might like to follow leanne on IG - she's a peloton instructor and talked about this recently, your posts reminded me so much of this

https://www.instagram.com/reel/CxYSVUdoQA6/?igshid=MzRlODBiNWFlZA==

Maybe try to think of learning to live with it, and acceptance, rather than fighting something? Fighting (a battle) is hard enough, even if one wins it. But what if you don't, what if you can't? Does this make you a failure? No, of course not.

Acceptance is the saner outcome. Also, remember, this is just temporary, albeit for a few years at least. But like I said a few posts ago, you don't need to stay the course if it's making your life a living hell. Remember, you have to live in your body, hopefully for many years to come. I strongly feel quality of life is more important and quantity of life.

Ultimately though, you know how you feel, what your limitations are and what you want. You are the boss of you, and you will find the way that suits you.

Yes that's what it is.

And the fight - I have accepted a lot, years ago. It's around pacing and extra physio and saying no sometimes when I really want to say yes, and then missing out. That's the ongoing challenge.

Revisiting those boundaries with others and myself is tiring.

fight or battle is not the right word - I hadn't seen it as a win lose before. But I see that now. I visualise a hike and battling wind 😜

I've never been into competitive sport!

In terms of responses - I found this a good read about toxic positivity. I was diagnosed with a chronic blood cancer - grateful that it’s not acute leukaemia but it is still shit. https://community.macmillan.org.uk/cancer-blogs/b/community_news/posts/toxic-positivity-talking-about-cancer#:~:text=Toxic%20positivity%20can%20be%20tough,of%20support%20you%20may%20need.

I found similar, everyone looking for the positives to the point of not really hearing what you're saying, I'm a very positive person, I wanted to talk about the risks and potential side affects etc. not because I was being negative but just because that was my reality and I wanted to talk about it to help me face it.

Don't underestimate having an early stage one bc, it's a long haul, I'm approaching a year from my surgery and sitting here now and my scars are driving me crazy, the RT caused lots of issues which required further treatment, stopping HRT that had just got me feeling human was awful and it took about 7 months for my body to adjust to the Tamoxifen, I still have days when I can suddenly become exhausted and have to have a nap during the day, I fall asleep on the sofa watching tv, something I've never done.

If I'm honest, having lost my husband to cancer that was only discovered when it had reached an incurable stage 4, I really do struggle to say the right thing when people talk about having a stage 1 discrete tumour. I know that I'm entirely unreasonable to think those people lucky (in cancer terms) but I do.

When people refused to acknowledge my DH's terminal diagnosis and pushed the positivity and 'miracles happen' narrative, it did my head in. But I do envy those who have every reason to be positive.

But I try to be tactful and empathise with the shock of the diagnosis. I can't guarantee that I haven't reacted to consequent scan news that the tumour is contained, with something like 'oh that's so good to hear'...because compared to the alternative news, it is. Especially when it turns out they don't need chemo.
I will try to remember to acknowledge their worries in future though.

All the best with your op and any subsequent treatment, @wotnowyousay

I had my four year post BC mammogram today. I get it.
The oft repeated phrase that if you are going to get cancer BC is so treatable etc.
Another thing that really got my goat was people telling me how well I looked when I was on my knees from chemo.
Friends are flaky and I have never forgiven one for disappearing when I was so ill.
Have you read any Sara Liyanage? She has written a couple of books about during and after breast cancer and I found her very relatable.

Also to add that you are right to worry about Tamoxifen. I still belong to a group of about 20 women who had BC and all of them without exception complain about the effects. I didn't get it as ER- but I do know there are several alternatives and some are tolerated better than others.

I understand exactly what you mean. I think people think they are being kind by being positive. I got so tired and unreasonably upset by all the comments of 'Oh you'll be fine, I had it and I am fine now' Being told you have cancer is a massive shock and you need time to process it. It is great that your prognosis is good, the clear margins are great, but it is still a massive shock and you will still need that time to process. You are also not unreasonable to worry about the impact of Tamoxifen. It is good but it does come with side effects. I found the cancer thread very helpful and supportive, there will be others there that feel just as you do.