AIBU to not want to ring the bloody bell

[Thehitskeeponcoming]

Finishing radiation today. IDC & DCIS. Caught early. Lumpectomy. No Chemo but did 4 weeks of radiation. Starting Tamoxifen in 2 weeks.

I don’t want to ring the bell and feel stupidly conflicted by it because I know saying no will create more of a fuss.

Suffer from medical PTSD prior to this cancer diagnosis so I’ve found it very difficult. I’ve also been sick with the other shit for long enough (hence medical PTSD) to know that this is likely not the end, particularly with hormone therapy starting soon. It just feels so fake and twee to me.

How did everyone else feel about it? And if anyone else feels the same, how did you decline gracefully or did you just go through the motions because it was expected?

I did not ring the bell. I had a 90% recurrence chance (which happened within 8 months) and absolutely did not want to ring that stupid bell and give anyone the idea I thought I had won. It felt like cursing myself.

There was no fuss. My nurse asked if I wanted to. I said no thanks. Nothing else was ever mentioned by anyone.

Thanks for the reply @AGreatUsername

I initially thought that it wouldn’t be a big deal to decline but I overhead an interaction last week that’s got me worried. A patient said no, she didn’t want to so caregiver asked if she was sure, so patient said if I must. Then they wanted to know if she wanted a photo or video, so she said no. Again, are you sure? This poor woman had the quick thinking to say, no picture as she just wanted to “be present in the moment” and all I could think of was good lord!

I’ve no idea what my exact recurrence risk is (I think they are low-ish) but family members with the same profile did end up getting it again and dying so I really don’t want to jinx it,

If I’m asked, would a light hearted “Hell no! I don’t want to jinx it” be inappropriate?

And @AGreatUsername I’m sorry about your recurrence. It’s shit.

I wouldn't want to either OP, I thought it was a thing for children tbh.

When the time comes, Id light heartedly say that it's a great idea but i'm a bit superstitious and don't want to jinx anything then carry on with the smiling and thanking the nurses before exiting.

Bell-ringing wasn’t a rite of passage where/when I was treated (ovarian cancer – surgery followed by chemo). I understand the supportive impulses behind the bell-ringing gesture, but I would never choose it for myself. Each to their own, freely chosen, would be my view. I hope your coming treatment goes smoothly and well for you.

I didn't but it was during covid when treatment was moved to the local private hospital and I just left. The place was deserted anyway. If I'd been in the usual hospital, I think I would have done the same- a quick exit with no fuss

Surely it's optional? I think I would consider it sentimental nonsense, tbh. Just thank the staff for their assistance and then leave.

My cousin didn't because she felt it was tempting fate. I also cringe when I hear people saying they are "cancer free" following treatment - whilst I would love it to be true for all who are told it, cancer is sneaky and hides, it reappears - no detectable cancer would be more appropriate. Perhaps I just know too much.

Hope you are one of the fortunate ones op and it is completely cured!!!

Well my cancer is incurable. I'm obviously delighted for those who get better, I wouldn't wish this on my worst enemy.

But I've seen and heard the bell ringing celebration as I've been passing, on a couple of ocassions, and found it really upsetting. So please, for me, don't ring the bloody bell.

They didn’t have it in the hospital when I had bc several years ago. However, I wouldn’t have wanted to ring it either, as bc can always come back. I think it would be like tempting fate, plus I don’t like all that attention. I also never really celebrated the end of my treatment, as it was a club I didn’t really want to be in in the first place.

I totally get it OP. I didn't have chemo or radiotherapy, just mastectomy and 8 bloody years of hormone therapy, so didn't have to face the bell ringing malarkey. I would have definitely declined it though! And I didn't celebrate the end of the 8 years of treatment because the side effects caused other issues which I now take medication for. I don't call myself "cured" or "cancer free" because how do I know? I just say I'm well at the moment thank goodness.

I didn't ring the bell.

@mitogoshi thanks for putting into words what I’m feeling. I think I know too much too. How lovely it would be to be ignorant.

@WalkWithMeSuzieLee your wish is my command. It’s the least I can do for a random stranger on the internet.

I think you can just say no thank you. Will it definitely be offered? My mum didn’t get offered after her radiotherapy. I’ve been to our oncology unit probably 100 times with her and have never heard a bell. Perhaps ours doesn’t have one.

I was asked if I wanted to ring the bell at the end of chemo. Said no, no drama thankfully - can't believe any nurses are insensitive enough to put people under pressure. That's really inappropriate. But a light-hearted dismissal should work if you need to (I hope for your sake you don't get hassled).

I knew my chances of recurrence were high, and I don't think it will ever feel over - certainly doesn't to me yet, a year and a bit on.

There's a cancer recovery thread if you'd like some support with next steps. We are all trying to focus on getting stronger and fitter, but lots of us struggle with anxiety and the ever present fear of recurrence.

Definitely offered @naran it’s on the wall on the radiation treatment side just in front the door between the radiation and the general cancer reception waiting area.

I’m aware of the thread @dotty2 , thank you. I’m a long time lurker.

I’m unbelievably emotional today. I’ve worked throughout treatment. I got to work today, starting doing my things and my colleagues (who have been wonderfully supportive throughout) made a bit of a fuss about it being bell ringing day and I just couldn’t hold it together so I ended up leaving work about 5 minutes after I arrived.

Stupid sodding bell.

@Thehitskeeponcoming I'm not a cancer sufferer but my mum died from it as did my husband
Finishing treatment is an emotional time and that's all it is.. finishing that round of treatment....you don't know you're "cured" and in fact I think it's a very contemplative time....you've been busy with diagnosis, treatment, everybody has been getting used to you having cancer and suddenly all the appointments stop and you're like "what next" ? The friends who were so attentive go away and stop asking how you are and people want you to get "back to normal" but in reality you never will....it's life changing

If anyone had offered my husband a bell for finishing treatment I'd have been really upset. He had a brain tumour and basically it was holding the cancer until the thing inevitably came back.

Wishing you all the best in the future. Hope it does all go well for you.

Thank you so much. I, and many other lifers, really appreciate that. Wishing you all the very best.

My daughter wanted to when she finished treatment… but she was 7. I really disliked the bell ringing ceremony, felt like a cross between tempting fate and thrusting a celebration of finishing treatment in the faces of those who were never going to be lucky enough to be in that position. Obviously didn’t say any of that to her and she liked doing it, but personally I’d have preferred it if it had never been invented and we could have just celebrated her finishing radiotherapy / chemo at home - we did do that and still celebrate that day every year but more as a celebration of how brave she was.

so anyway, I totally understand you not wanting to and am so sorry you feel any sort of pressure around that - it should be for you to say freely what works best for you.

I’ve had cancer twice and didn’t do any bell ringing. I don’t know if there even was a bell. If there was, I wouldn’t have rung it.

I didn't ring the bell either, also hate the bloody thing! Though when I left chemo for the last time I didn't actually know it was going to be the last time, but I still wouldn't ring the bell even if I'd known. I just feel as though it's silly. Although I think people take different meanings from it, for some it's just having finished treatment whatever happens next rather than ringing it because you think you're cured.

I was offered the chance the ring the bloody thing located in an identical location. I'd just finished surgery/chemo/radiotherapy, now having ten years on Letrozole I'd always thought the bell was to say you'd beaten cancer and were now cancer free. No! It just says I've completed my treatment now we just hope for the best. I had no qualms saying no thank you, I'm not tempting fate. (Nor do I like drawing attention to myself in a public place.)

I worked in a chemotherapy unit and a patient bought a bell as they wanted to ring it and we didn’t have one. Us nurses on the unit didn’t want to put the bell on the wall (for all the reasons mentioned in this thread). However, management decided that patients would decide about the bell, so a survey went out to around 300 patients and it was about 80% in favour for the bell. So up it went. Nurses do not ask if anyone wants to ring the bell but patients are given a small leaflet when they start chemo stating that there is a bell and if you would like to ring it please ask.

There wasn't a bell at our hospital.