Ding Dong

I mentioned in my last blog that I was feeling like I was in limbo and I'd say it still stands. All the time you're in treatment and having chemo etc all you're focussing on is getting through and what's coming next and powering on (well I did anyway). But now the big parts of treatment are over I guess its a bit of an anti-climax really. I was expecting that that day that I had my last active treatment (so for me my last day of Radiotherapy) would be one of the best days of my life as it marked the end of the last few months of craziness, millions of hospital appointments and constant poking and prodding. Don't get me wrong it was a big milestone to achieve and I marked it by celebrating with family & friends but I'm not gonna lie - life after Cancer is bloody weird 🤪.

The End of Treatment Bell Fiasco 🔕

I think the other big thing for me was that I was expecting to 'Ring the Bell'. If you're not familiar with the concept, there is a fabulous charity called 'End of Treatment Bells' which supply bells to Cancer units for patients to ring at the end of their treatment. They are generally seen as a sign of hope and mark a huge milestone and people find it helpful to countdown to ringing the bell. When looking into this further I've also seen they also do milestone bells which have a different poem on so people can ring them to mark stable scans etc.

This is what the End of Treatment Bells look like

However, when I was in the last few days of Radiotherapy and excitedly asked the Radiographer where the bell was as I hadn't seen it in the department and I was nearly finished with treatment.

The first time I asked I was told that they'd removed it "cos of Covid" (standard! 🙄) so, me been me thought that's a load of crap and surely there is a way around this. I got tweeting and End of Treatment Bells informed me that they have a wipeable tubing available for the rope - fab I thought, we have a solution! (the hospitals solution via twitter to this was to play the bell digitally 👀 - totally missing the point I think!). So armed with a fab solution on my last Radiotherapy session (the day I hoped I would have rung said bell) I asked to speak with someone who could help me only to be told they actually removed the bell a few months ago as a recent survey had flagged that some patients found the bell upsetting and did not want to hear it when coming in for treatment and that it is not suitable for people who suffer with Autism and other disabilities. Now - don't get me wrong - I can totally understand how upsetting it must be if you or your family member will never get to that milestone and understand why it has been taken away from active treatment areas such as Chemotherapy/Radiotherapy lounges. I pride myself on how empathetic I am and can genuinely see why some people wouldn't like it.

What I can't understand is why a solution hasn't been found that works for all patients and is inclusive.

Surely there is a space/ room in the hospital that could be spared where this bell could go to allow patients to have their moment? I tweeted about this at the time and got a lot of responses from people about how monumental this was in signalling the end of their treatment and a particularly hard time in their life. If this was in a private room then people would be able to have this moment with their friends and/or family with minimal impact on other people. Some children's wards have also placed theirs in a cupboard so its not always on show but is there when people want it. There's endless options!

Sorry that this blog isn't as chipper a my usual but this is something I think needs addressing because the other worrying thing I found was that of all the responses and people I spoke to about it - nobody knew it had been removed and why. I guess I just want to protect others from that disappointment of not having the bell to ring at the end of their treatment too (I am a massive softy). It sounds daft when you're typing it out - getting upset over not ringing a bell but I did and I know others will too! ❤️

If anybody has any experiences of this please get in touch - I really would like to try and solve this issue in my local Cancer Centre. or hear if something has been done since I finished Radiotherapy at the end of Jan.

I did ring A bell..

To mark the end of treatment I went for a lovely meal at Miller & Carter to celebrate and after a yummy meal, I ended up ringing their last orders bell on my way out (my Brother-In-Law works there!). I got some funny looks from the other customers but ya know what, I didn't care! The prosecco's before helped too 😜

LOVING the dedication of drawing a radiation symbol here!

About a month after finishing Radiotherapy my lovely Husband (still haven't got used to saying that! - as if I've got a husband!) arranged a get together with our nearest and dearest at our local brewery. I got my hair sprayed pink glittery for the occasion and must say I absolutely loved having pink glittery hair (Thank you so much Little Snipperz Ossett for your kindness in glamming my hair up!) - I have popped a few pics below!

Moaning (from a loving place) over,

Kirst xx