Helen's Story

"They know mummy’s ill and the Hospice helps"

Forty year old Helen Handley from Tring has been supported by The Hospice of St Francis’ Spring Centre for two years following a sudden diagnosis of bowel cancer in August 2016.

She was recommended to the Hospice by her GP at Tring’s Rothschild Surgery and since then the team has looked after her whole family including husband Guy and children Anna, 7 and William 5.

The family has benefitted from emotional support, complementary therapy, practical advice for planning ahead, Tai chi plus an array of care for the children provided by the Hospice’s Children’s team which is funded by Children in Need. Here, Helen explains her journey:

“As soon as I stepped out of the car I knew it would be a warm, wonderful place,” explained Helen as she reflected on her arrival at the Hospice two years ago. “It seems odd to say it but since then I have totally fallen in love with the Children’s services team and the support they have provided to us. My children absolutely love coming here – it’s not a scary place at all. They know mummy’s ill and the Hospice helps. They enjoy the familiarity of coming to lots of children’s events and meeting other children in a similar boat so they’re aware it’s not just their mummy that’s special.

“Looking back, my cancer diagnosis was such a shock. There was no family history and I had no symptoms until one day I had cramping after eating which got steadily worse. Blood tests revealed nothing initially which can be the case with some bowel cancers but over the following two weeks the pain got so bad I ended up in A & E at Stoke Mandeville where I had to have emergency surgery to save my life as the tumour in my colon had grown so large it was causing an obstruction and effectively my stomach was completely blocked.

“My husband Guy arrived at the hospital to find me prepped for surgery and I explained what the diagnosis was. We knew we had to be brave together ahead of the emergency operation to follow in a few hours.

“Luckily, the operation went well and they removed the cancer whilst checking my other organs for signs of the disease. When I woke from the operation I was massively relieved to find no stomas had been needed. The surgeon had been able to remove the cancerous part of the colon and re-join it without needing to put a stoma in place. This would have been another hurdle ahead of chemo starting. It was a difficult recovery in hospital but after 18 days in hospital I was able to go home before embarking on a gruelling phase of chemotherapy.

“The next few weeks I focused on getting better but when visiting the oncologist a few months later, it was the worst day of my life as she confirmed that I had advanced cancer. She told me I would always need treatment as explained that, having had their radiographers analyse scans fully, the cancer had actually spread and I was deemed incurable.

“I am going to have to have maintenance chemo now for the rest of my life. This has to take place every two weeks which is draining physically and emotionally but vital to keep the cancer at bay. I’m on cycle 50 now so it’s been a tough process.

“The chemo wipes me out physically for a few days but then allows me to be a normal person the rest of the time, enabling me to enjoy being a mum and getting on with things I’ve always loved doing like meeting friends for coffee and doing Zumba. The Hospice is great at helping me to focus on these things that matter.

“I’ve had fantastic support from the Hospice’s Carer service as has my husband. The team has been great at helping us approach the practical things that no one likes to think about such as setting up Power of Attorney and getting our life affairs in order – things like making a Will. Guy has also completed the Hospice’s Carer’s course which was difficult to do but is now done. He will be able to draw on that resource in the future if he needs it.

“I’ve really enjoyed the holistic care on offer at the Hospice. I’ve had reflexology which has helped with swelling in my feet and enjoy gentle exercise classes like Tai chi and Pilates which keeps me calm and are ideal after chemo as they get me exercising without over exerting my heart.

“My scans are good but I do have ‘scanxiety’ every time one comes up. This is when my community nurse at the Hospice, Julie is brilliant, I have CBT with her regularly and it’s a chance to sit down, chat, share worries and seek her advice.

“I think of the Hospice like a retreat with its array of activities that help me and my family and all set in such lush, beautiful grounds. We get all we want here to help us cope with my illness – the practical support, the emotional stuff and comfort for Guy and the kiddies.

“The Hospice has given us and particularly Guy and me, invaluable support we never imagined possible. My children have been so well supported by the children’s team right down to receiving a Christmas present personally addressed to them and with a gift inside that they loved – obviously chosen with kindness. Anna and William have been to the Pony and craft days which they’ve enjoyed so much – it’s a chance for them to relax, share any concerns with the support workers and more importantly have fun!

“I’m staying positive and I am being very careful with my time. I save my energy for the children – they make me so happy when I am with them and I’m pouring myself into looking after their needs and making sure we have lots of fun times together; memory making.

“Like the Hospice, I was 40 this August and wanted to give something back to the charity for the amazing work they do as my family has benefitted so much from their care. I love doing Zumba, it’s something I’ve always done and it keeps me sane although nowadays I follow my class’s routines at my own pace and just enjoy the music and dancing. To support St Francis I’m organising a Zumbathon at Tring School on Sunday 17 November 2-4pm and I’d love as many people as possible to get involved, enjoy the class and help me give something back to the Hospice – even if they have never zumba’d before! My instructor, Roxanne Hussain, is a legend in the Zumba world and is going to lead the workout and I guarantee lots of fun!

“I didn’t know the Hospice was here before I was diagnosed with cancer. Now I do, I’m blown away by the services the Hospice provides and I’m doing my best to spread the word through my Zumbathon about how it helps should anyone ever find themselves with an unexpected diagnosis like I did.”