Well now ladies, you might find this interesting. The 'bell debate', is clearly being taken seriously by NHS, certainly on my patch. Asked today to talk to a Patient co-ordinator', specifically on the subject of will I, won't I, and my thoughts ( as what I surmise to be a flagged, 'very nervous patient, so hard to line up). Soooo, despite the curve ball, as they've saved my life, so what is an hour of my time, here is what I said:
Yes, very upsetting for patients who see the ringing as a sad reminder of their circumstances.
But! If a bell helps other patients get some release then ring ding away to your hearts content.
Solution, bells are sited in a place where the ringer can go as long and loud as needed, but other patients can't hear.
The bell ringing is a practice imported from America, where everyone has to be flashy. There was a good debate about it on the Jeremy Vine show on Radio 2 a couple of weeks ago with quite a few people saying they found it upsetting as they knew they would never be "cured". In my own case my last session of radiotherapy next Wednesday will be the end of my treatment, apart from taking tablets for the next 5 years. The radiotherapy has been mainly precautionary as the surgeon was pretty sure that all of the cancer had been successfully removed. However I won't be ringing the bell.
Hi all, Tam is giving me mood swings, so might feel differently an hour from now -lol- but I don't feel its a bell ringing celebration, as its happened, getting BC, and you can't make it un-happen. Just been told when next precautionary mamo is, and with a grade 3 tumour, you are never really over. Many I know. I also read somewhere that the bells may be removed as some people find them upsetting. Certainly, as delighted as I was for s guy this week, the bell sent me into floods of tears which the radio staff then had to contend with whilst trying to line me up.
I haven't started radiotherapy yet (Aug),
but I have no intention of ringing any bells!
To me finishing rads is just another part of a long term treatment programme, there are still ten years to go before I finish treatment and the worry of recurrence will always be there in one way or another.
It's more important to me to try to get my child through to being an adult, that'll be my achievement from treatment x
No, I didn’t ring it, though I did have my picture taken by it - while I was waiting for the nurse to contact the doctor about my croaky voice. Next thing I knew, I had an appointment at the clinic on Friday (so much for freedom) and now have to have an MRI scan. I KNOW it’s just side effects of chemo and radiotherapy but my oncologist won’t take the risk, despite what the BCC leaflets say. So now I have an additional Ugh Day to add to July’s diary and something else to keep my husband’s anxiety levels soaring. I just want to shout ‘Give us a break!’ Still, I’ll get a thorough health check won’t I?
I did. It wouldn't have happened but my husband came with me and he practically had my arm up my back until I did it! I am seriously relieved that I don't have to travel to the hospital today, but it does feel odd that this is the end of the 'hands on' treatments. I've been on Letrozole and ibandronate sine March, both of which I seem to be tolerating fairly well, so there's still a way to go, but I must say I certainly feel better than I did at 2:30 yesterday morning, (unsurprisingly).
Hope all of you are doing better too. Thinking about you x
Did you ring the bell in the end? Even if you didn't, I hope you're both doing OK, and how nice to know you don't have to do those daily trips to the hospital any more.
Good luck to you on the next step of this journey xxx
And there is still reconstruction as well. I was told immediate reconstruction wasn't possible due to needing radiotherapy. But I can't afford anymore time off work (only get SSP) so I'll stay lopsided for a while longer.
We'll get there, though it might not feel like it at the moment.
Hugs to you all xxx
still in throes of chemo but have appointments for bone density scan and radiotherapy plus zolodrex and Letrozole for at least five years - it is all exhausting physically and emotionally . If we all knew we would be OK hoe loudly would we ring that bell but reality is we never will .. just have to learn to live with it so totally get what you are saying x
I'm sorry you still have a way to go Jaybro. Even though I still have a week to go I don't feel like ringing the bell either. Once radiotherapy is over I start Zoladex and Letrozole. I put off starting them because I didn't want to go through the menopause and have Letrozole side effects while coping with the radiotherapy.
I guess this is going to be our life for the foreseeable future, but hopefully it'll stop the cancer coming back though.
I know what you mean about the insomnia Bertcat, although I like this time of the morning and I'm sitting in the garden listening to the birds.
Good luck to you both with your last session today xxx
I feel exactly the same. Last session 18th but finding the whole thing a bit of a struggle - and not sleeping, obvs! Very sore, itchy and inflamed, and not looking forward to the next couple of weeks before it all settles down. I don't want to ring the bell either, it all feels a bit theatrical and too celebratory. Not for me.
Hey ho, keep b@@@ering on, I suppose. Chin up Jaybro xx
I have my last radiotherapy session tomorrow (well, today now - I have insomnia) and, so far, have got off very lightly. It’s something to celebrate. Yet I have a zolendrate IV infusion soon, 2-3 weeks of possible radiotherapy side effects, chemo side effects like neuropathy which may take months or years to clear, 10 years of anastrozole... A man rang the bell the other day and everyone clapped. He looked sheepish but overjoyed and I choked up with tears for him. But I don’t want to ring the bell. It’s not all over. Am I being a self-indulgent, petulant (rude word)? I think so. I should celebrate. Whoopee, yay, whoop whoop. No, doesn’t feel right 🙂