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.

I sound so bloody ungrateful I'm sorry, I'm exhausted after very little sleep.

Yes, I get it, its less shitty than it could be but its still shit tbh. The long running cancer support thread is v good, join in there, space to vent and/or get support with like minded individuals who are going through similar

I don’t think you sound ungrateful, it’s a hard thing to be going through.

I think when people say that it’s a reflection of the fact that they were really worried for you / afraid of loosing you, so they are hugely relieved for you. But of course it’s still a tough condition and you have to go through the treatment.

I think with any illness people on both sides of it need to cut the other slack. I also think it’s fine to say - yes I am so relieved and appreciative, but the treatment combined with coming of HRT is still making me feel like I’ve been hit by a truck (or whatever).

You are not ungrateful at all! Its great that you have clear margins etc but it still a horrible experience and making you feel awful.

I hope you recover quickly

I think your reaction is entirely normal. It is not great news to receive and although we know that people don't mean to, all that looking on the bright side seems dismissive of them.

Thanks. It is still shit, I've got excellent counselling. Will take this forward to her.

It's particularly DH who really can't seem to say anything that makes me feel better. I keep thinking he thinks I'm being negative and pessimistic when I describe the potential implications of tamoxifen in terms of daily living and symptoms or possible reoccurrence rate, but I'm not as it's info that is helping me both take the tamoxifen and do exercise etc.

the predict tool was a really low risk, great! - but that didn't help with motivation to take tamoxifen! I did my own digging and I know no one can say for sure but it's been helpful to know it does have an impact against the negatives.

The cancer thread is really lovely but I'm definitely so minor in terms of risks of death etc that I don't feel I can moan there.

I understand OP. I had stage 1 hormone receptive breast cancer 5 years ago. Surgery, radiotherapy and tamoxifen are still stinky things to deal with. It’s still cancer which is bloody scary.

Your reactions are entirely normal. You’re going through a lot.

It is stinky. I've had prior chronic health issues too so I'm a bit fed up.

At the same time I can see so many silver linings (would be too hard and outing to explain) that I've felt mostly mentally ok. It's been the side effects of the surgery and dropping the hrt that thrown me but I'm working on all that.

And quite able to consider that tamoxifen will be ok for me.

Oh, I moaned on the cancer support thread. Everyone was kind.

They are Minnie, and so are all of you

(Half of it is that my brain is too stretched to remember everyone's name there and keep up with the thread!)

I understand as I'm going through the diagnostic process (had me biopsy etc on Friday). Have been told it's either early cancer (no lymph nodes involved on the u/s) or precancerous cystic lump (nothing came out when they tried to drain it).

I've not told more than a very few people (my parents, kids (adults), reluctantly Mil, my closest 2 friends), and they all latch on to the "precancerous" bit. No matter it's still pretty shit, I'm definitely having surgery. Dh (a GP) said yesterday that in his experience there'll be radiotherapy, and they already mentioned hormone blockers.

I've had to come off HRT as well and am drowning in sweat at night again plus the hormonal rages .......

Yeah, understandable you’re pissed off.

Shit comment from the nurse, particularly!

I get it, OP. And frankly, the more people cheerily minimise, the more likely you are to want to insist on the actual awfulness of it all, which ends up making you feel worse.

My mother is a particular offender at this. She seems to be entirely incapable of just saying ‘I’m sorry, this is shit’, and she does it regardless of what the reality of the illness is. I was visiting a friend who was in end of life care in a hospice (I had come home from overseas to see her, because I knew she hadn’t long to live) and my mother was still chirping ‘Ah well, you never know!’

Oh weegie in sorry! I think I recognise your name from elsewhere here.

It was how my brain unraveled coming off the hrt and post surgery.

I actually started the tamoxifen this week and have been able to think more clearly weirdly (and have likely jinxed it.)

I think it's the treatments as much as anything. As far as I can tell someone with a pre cancerous DCIS would be taking tamoxifen and coming off hrt and so would be in the same boat, bar radiation.

It's still how they deal with it.,

Technically I'm cancer free right now. And I definitely internally and verbally to all celebrated avoiding chemo.

I think that's it maud.

Weirdly I'm similarly finding a friend who is on tamoxifen for something else being a bit too honest irritating too!

I need practical stuff. Cooking super foods and lifting weights.

I'm going to attempt to make a dress from scratch from a pattern. (I'm off work at the moment. Last weeks target was to basically get off my phone following the Russell brand stuff and not cry which I did by Wednesday.)

*if I never make the dress it was the idea that that counted!

Honestly my mum had stage 4 breast cancer and we used to go all out and celebrate if she had a good scan that showed not too much progression! But she was always so positive and loved life, she never focused on the negatives and every little silver lining we celebrated and focused on. I think people are trying to put things in perspective rather than trying to minimise what you're going through. My nans just finished treatment for stage one breast cancer and she also struggled despite it not having the same prognosis or outcome as my mum unfortunately had. Try not to focus on what people say - people often say the wrong things in sensitive situations but it's rarely meant in a bad way, it's just clumsy wording. Best of luck for your treatment 🌺

Does your hospital have a finishing cancer treatment course? Ironically I missed mine as I had a winter virus but apparently they’re helpful.
I asked DH how he dealt with it and he says he was lead by how I felt.

It's all relative really, and entirely personal. There's no right or wrong way to feel.

Initially, it seemed I would get away with just a lumpectomy, a little radiotherapy and ET. Was easily more devastated about having to stop HRT than anything else. (I still am - like you, I had a dreadful perimenopause). I opted for a mastectomy so I could avoid radiotherapy. Despite no lymph node involvement, due to the size of tumour and placement, radiotherapy is now needed. My oncotype dx/risk of reccurence was crazy high, so have to have chemo too, along with ET and a variety of other drugs I didn't really want. Am still contemplating swerving ET altogether as I don't want a repeat of the issues that made perimenopause so unbearable.

Even so, I feel incredibly fortunate. Lucky even. I am only stage 2, and yes, I have lost a breast and soon my hair, but all being well, there will be no recurrence. Both my parents came in at stage 4 for their respective cancers, so I do feel some celebration is in order (for me) that I'm still in the highly treatable zone, and won't be dead in six months of diagnosis (which they were).

If anything, I'm probably the most guilty of minimising, far so than my friends and brother. I hugely surprised by this, have never been the most positive person before cancer, but it seems cancer has turned this on its head.

How you feel is entirely normal. It's for no-one to tell you how you should feel, or think for that matter. What you're experiencing is unique to you, and your feelings are all that matter. As I sometimes say to my brother, no cancer, no opinion.

I have deep fears of the symptoms of treatment based on dealing with those symptoms for 26 years. I know radio can be bad - but it can also pass. It's the '5 years of' tam that I'm fearful of.

It's not negativity, it's fear?

I'll definitely be properly celebrating when I'm off the tamoxifen and 5 years clear of reoccurrence.

I too feel extremely fortunate and have spent all summer reassuring friends I'm fine. I had a lovely summer despite surgery. I've only accepted some macmillian counselling to deal with coming off the hrt and starting tamoxifen.

Re. HRT. Like you, I had to come off it.

I asked my GP to put me on a light antidepressant to help stave off the hot flashes, night sweats, and keep my mood even and stable. It has worked a treat. Maybe consider asking your GP to do similar.

@wotnowyousay You don't have to take ET. You can say no, or you can start and stop it if it doesn't make you feel great. Lots of women don't last the course, so it's not the end of the world if you decide it's not for you.

Dr Liz O'Riordan has lots of videos that might be worth watching. Start with this one

YANBU - I think people just don't have an understanding of all the shit that goes with a cancer diagnosis. I have a friend who has breast cancer and she had had a "great" outcome, but at the same time she has hurtled into menopause and her medication makes her tired and sick and despite the "great" outcome it is all undeniably shitter than just not getting cancer in the first place.

And the pressure to stay positive too - it goes against all reason sometimes.

Was told not to use the word should by counsellor last week, or at least to notice when im using it. Mainly that I should be able to deal with this or should be back at work now.

This was probably "I should be able to say accept/ say that's good" moment.

I think semantically I rarely use simple words like good or bad as they're not particularly useful. But use should too much

There's a load of other baggage too now I think about it.