China Participant on Her Cancer Journey, Fundraising and Ringing the Bell
Read in Karyn’s own words her inspiring story about her cancer journey, signing up to the Great Wall of China Trek and finally ringing the bell. Here’s her story…
On Monday 6 May 2019 I was so proud to finally ring one of the bells at Velindre Cancer Centre, Cardiff with family and friends. I say ‘finally’ because it’s been a long time coming, as I explained:
Why now? You “finished” treatment years ago didn’t you?
Well no, actually. I finished my active treatment in 2015, following my diagnosis and surgery at the end of 2014 – which is when I feel I was cancer free.
My treatment is ongoing: I’m not even half way through my 10 year hormone therapy treatment – I take Tamoxifen every day – and I’m fortunate to receive a bone strengthening drug – Zometa – every 6 months.
Isn’t this an ‘end of treatment’ bell?
Well, this bell was provided by a small charity called ‘End of Treatment Bells’ which was set up by a mum, Tracey Payton, a few years ago after her daughter Emma rang a bell at the end of proton beam therapy in the United States in 2014 and she decided to bring the idea to the UK and to place some bells in children’s cancer hospitals. She has placed over 200 bells in children’s and adults’ cancer centres across the UK, Australia, New Zealand, Dubai and even back in the US.
I know that many patients focus on ringing the bell to get them through their treatment, like my colleague and friend Cherry who was diagnosed last year and received radiotherapy at Velindre.
But what about patients that, unfortunately, will never ring the bell at the end of their treatment… because they won’t ever finish? I say ring them for what ever reason you choose: another chemo session down? Ring the bell. Another procedure? Ring the bell. Choose your own milestone to mark. To me these bells are a symbol for hope and milestone marking even celebrating.
Like many cancer patients I wanted to give back in some way after my active treatment and knowing I couldn’t climb a mountain I was so pleased to be asked to take part in some workshops with other patients for the Transforming Cancer Services (TCS) team to feed in my patient experiences. Our feedback helped shape the new cancer strategy for Velindre and has influenced the design of the new hospital.
One of the things I asked for in the new hospital was some huge wind chimes for patients to ring after seeing my lovely friend’s daughter Mary – and also my daughter’s friend – ring some wind chimes after she had proton beam therapy in the US. I saw how important it was to Mary, her family, the staff at the centre and her friends back at home watching the video. However, the new hospital is some years away so I looked for bells here in the UK which is when I found Tracey’s charity.
I’m so pleased that Velindre Cancer Centre has 2 bells. I’m pleased that the management team gave into my nagging and undertook some consultation and trialled locations to find the best spots for them. I asked for 1 in the radiotherapy department and 1 somewhere else as not everyone receives radio. This one by the main entrance – or exit – is perfect.
Why is it important to you to ring the bell today? The bells have been up for a while now and you’re back and fore all the time here – why have you dragged us all here on Bank Holiday Monday?
It’s because it’s Bank Holiday that it’s a perfect day logistically so you – my family and friends – able to be here. I can’t imagine ringing this bell without my children Megan and Owen, my stepdaughter Shelly, my husband Nigel, my Mum, my sister Kathy, my stepmum Michèle and my Dad being here. I’ll send the video to my brother Mike in Australia!
The downside is that Velindre staff who have been so supportive of me since my arrival here are having a well deserved day off! I’d like to thank all the staff here for their kindness whether its gentle blood taking or a smile in the corridor. I’d particularly like to thank my oncologist Dr Abraham, physiotherapist Sioned Roberts (& wish her luck in her new job), my counsellor Dr Anne Johnson, and her secretary Kate Morgan.
In the grander scheme today is a perfect day as in a year’s time I will be undertaking one of the most difficult challenges of my life: the trek to the Great Wall of China fundraising for Velindre. The trek will be demanding for me on many levels, but I’m sure the training and the experience of going to China will be good for my physical and mental health.
Also I want to raise as much money as I can for this amazing place. Fundraising is so important for Velindre to provide services over and above what the NHS can provide… free wifi across the hospital so inpatients can video call their families and out patients can browse the internet or check emails;
personalised books and soft cuddly lions for children to help understand what a parent or grandparent is going through and help with separation during hospital stays;
specialist cancer nurses – which I believe every cancer patient should have access to;
and funding therapeutic services to help cope with side effects of cancer treatment such as counselling, fatigue workshops; physiotherapy services like specialist pilates classes and acupuncture; and complimentary therapies such as reflexology.
Significantly, Velindre also funds vital research into cancer treatment. There’s no denying that chemotherapy is brutal; radiotherapy is exhausting and can be painful and current drug therapies have too many unwelcome side effects. But I’m glad to have had the benefit of such vital treatment.
I’m so grateful for the support of family and friends, not only during treatment, but for supporting me on the trek – especially Beth who will be coming with me – and in my fundraising efforts, especially Sue who raised over a thousand pounds running the London Marathon for me last week.
So why now?
As most of you know I’ve had a difficult year. I returned to work at the end of my treatment and a second preventative surgery, but last February I became overwhelmed and depression and anxiety took over. Late last year I saw the promotion for Velindre’s overseas challenge in 2020. A trek to the Great Wall of China, one of the places I’ve always wanted to see. I decided I could finally climb my mountain.
It’s fitting that the trek will be led by Rhod Gilbert. I want to share with you something I noted down back in 2014.
16 December 2014
Funny thing happened today. Watched ‘Rhod Gilbert vs Kilimanjaro’ on tv where he climbed mountain to raise money for Velindre Cancer Centre. I’d had call this morning to arrange appointment to see oncologist tomorrow at Velindre. Watched Rhod struggle last 100m to summit with team from Velindre. It finally sank in that I’ve had cancer. When I went upstairs my legs went from under me.
This was my first connection to Velindre & it has been part of my life ever since… and I suspect it will be for some time to come.