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Insensitive

10 REPLIES 10
paris
Member

Re: Insensitive

Thank you Helen! I've emailed the link to my oncologist. I hope we get some closure on this and separate areas are set up to celebrate end of treatments. 

Will keep you all posted! Take care everyone and stay safe. Gill xxx

helen44
Member

Re: Insensitive

Hi Gill

Totally agree with your thoughts on this. Thankfully we don't have a bell in our chemo ward. I have had SBC for 8 years and spend a great deal of time in the ward so wouldn't like to hear it.

You should read this link in which a lovely lady & friend called Jo highlighted this very subject on Jeremy Vine's radio 2 programme and in the Daily Telegraph. She's the founder of MetUpUK, a SBC patients advocacy group. 

https://www.telegraph.co.uk/news/2019/07/07/nhs-should-ban-bell-ringing-ceremonies-celebrating-end-c...

Helen x 

macca5861
Member

Re: Insensitive

Hi

I can’t believe this topic has come up I was literally having this conversation with my friend last week, it’s not something I’d ever thought of untill I heard the bell last week and when I did I cried twice. I’m so pleased for them people ringing it but upset that we all won’t.

big hugs xx

paris
Member

Re: Insensitive

Thank you so much for your reply. 

I have just had a telephone appointment with my Oncologist and I mentioned it to him. He completey understood where I'm coming from and said he wasn't a fan of the bell either! He asked me to email him my concerns and he would pass on to the relevant department. He encouraged others to also contact the hospital too! I got quite upset and tearful on the phone and I think he realised how much this affects us secondaries. 

I think I will contact Breast Cancer Care and Macmillan and suggest hospitals re think where they place the bell and to be in a separate part of the clinics. Im surprised no one else has complained about this before now! 

I will update with the comments I get back. By the way...my hospital is Clatterbridge, Liverpool

Take care ❤

Gill (aka Paris!) X

Seabreeze
Member

Re: Insensitive

Hi Paris et al,

I agree with all of your comments, am quite horrified by what you describe, and think your feelings more than justified. 

A friend of mine said she wanted to hold a party for me, a year after a being diagnosed as a kind of celebration of getting through/over it (can't quite remember the wording). While it was a lovely thought in terms of gesture (and she's a great friend who means well) it just didn't ring true to me, albeit only stage 2 diagnosis, with a few years later a significant "highly suspicious, prepare yourself" secondary scare. Even for stages 2 and 3 personally I think no evidence of disease is the preferable description and dislike the "oh, so when do you get the all clear q", given bc's ability to hide out in the bones, one never truly knows for sure. 

I think any end of treatment, or anniversaries, following diagnosis are a very personal matter and am with you, being quite horrified at your description of bells being rung while you are going through treatment and the rest thereafter (when others finish treatment) while in a shared space in hospital. It's such a personal thing.

A letter to Macmillan sounds like a good idea - might also be worth discussing with Breast Cancer Now.

Seabreeze x

X

 

 

     

 

paris
Member

Re: Insensitive

Thank you for your replies. Im glad I'm not the only one who feels the same as me. I feel like I need to write to the hospital directly or maybe speak to Macmillan? 

Will hope to take this further and will post any updates. Thanks again xxxx

Angel Eyes
Member

Re: Insensitive

Hi SecondarySister,

Couldn't agree with you more. ❤️

 

Angel Eyes x

Secondarysister2
Member

Re: Insensitive

Totally agree!!! It is very insensitive. It is EXACTLY as you describe. Personally, I would not want to “jinx” myself either or be off guard with it all and take it for granted at being “cured”. False sense of security. 

My mum had stage 2 grade 2 breast cancer over 11 years ago and her overall prognosis looked great! We was even told after 10 years she would have just as much chance as any other person of getting cancer again. How wrong. How very flipping wrong. 11 years later and the uggers are back in her bones. So all along she was never cured! Her treatment was not complete and never will be. I do not see the point in ringing a bell. No one knows what the future holds. 

I understand some people want to celebrate the end of their treatment for primary, but one can do it more modestly and with more thought for others whose treatment will forever be ongoing. But very treatable secondary breast cancer is !!! I will celebrate every bit of positive news my mum gets between family and friends. 

I hope you feel in brighter spirits soon! Take care xxx

ems22
Member

Re: Insensitive

I too find it very insensitive. When I finished my treatment for primary BC in 2015 I was encouraged to ring it by ward staff but I declined and just walked past it, couldn't even look at it.

Since being diagnosed with mets in april I've only heard it being rung once whilst I was having chemo treatment. A lovely gentleman declined to ring it a few weeks ago when I was having treatment, he told the chemo nurse that he wouldn't feel comfortable as some people have on going treatment, so some people do understand. 

To be honest I look back now to the end of my then treatment and I'm glad that i didn't ting it, not only for the sensitivity towards others but also it would now feel like it was no more than an empty gesture, no real meaning. 

Gelbel
Member

Re: Insensitive

Hi Paris

I am so sorry you have been made to feel sad and I totally understand why.

I have always, always, always hated those blooming TV ads/programmes that show the bell ringing celebrations.

Why? For the exact reason you gave. And I've nursed on a gynae ward where we sometimes had ladies losing their babies put next to those having abortions. 😠

In this day and age of not offending anyone, I can't understand why any sensible person lets this insensitive practice (IMHO) happen.

I will be huffing and puffing and eyeball rolling and eyebrow raising when I hear it. I think I'll even question it. I'll certainly tell them what to do with it when they ask me to ring it. I've already made that decision and I only start treatment with a Ms and ANC on Friday so my hearing it is still to come.

I can't for one moment claim to know what you are thinking and feeling. So I can only send you a virtual hug. 🤗

One thought -  next you hear it again, can you picture the bell bashing on the head of the person who came up with this ridiculous idea? I'm a lover, not a fighter but sometimes needs must. Or hear it as a positive sign you're having treatment to prolong your life? xx

paris
Member

Insensitive

Hi everyone. Just returned from hospital for my monthly denosumab injection and palbociclib tablets. There for 5 hours, but that's another story! Whilst waiting for treatment I could hear every now and then the bell ringing and loud clapping and cheering as someone had finished their chemo. This wasn't done when I finished my chemo/radio when I was first diagnosed in 2009, but all I wanted to say is us secondaries will never get to ring that bell and it upset me a lot to witness the joy and tears of relief on the faces of those who had received their last treatment. I think the hospitals should be more considerate to our feelings. It reminds me of back in the day when ladies who had suffered miscarriages where put in wards with new mums and mums in labour. Im feeling a bit deflated today and sad, all because of a bloody bell!