Carley’s story

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"For us, as a family, the support of St Clare Hospice at Home team when we needed it the most demonstrated just how amazing and important the work is that they do."

“My mummy, Michelle, was first diagnosed with stomach cancer in October 2017, aged 57. After having surgery to remove her stomach, doctors discovered it was worse than initially thought. She began chemotherapy shortly after the operation. Throughout the chemo mummy was absolutely amazing – you would never have known what she was going through. She didn’t lose her hair and she kept her spirits up. However, four weeks after finishing the course she started to feel unwell again.”

“In September 2018, after more tests, she was diagnosed with secondary cancer and this time it was incurable. She spent three months receiving palliative care in a London hospital but they couldn’t get her symptoms under control. It was at this point she was discharged and with the help of our GP, we were put in touch with St Clare Hospice community palliative care team.”

“We had our first home visit from one of the Clinical Nurse Specialists, Louise, and from the minute she walked in she made us feel at ease – she was absolutely brilliant.”

“Louise was clear and took control of the situation. She advised alternative medication and solutions to make mummy as comfortable as possible, talking us through every step, and closely monitoring medication given through mummy’s syringe driver to manage her symptoms.”

 

 

 


A stay on the Inpatient Unit

“It became clear mummy’s symptoms were complex and hard to manage from home, so Louise suggested a short stay at St Clare Hospice to find the correct medication to manage her symptoms.”

“I have to be honest; mummy didn’t want to go into the hospice at all. She didn’t mind being visited at home by the nurses, but she was anxious about staying in the Inpatient Unit.”

“After much persuasion, just before Christmas, we managed to convince her to go in. I pleaded with her to do it for me, and our family, because we wanted her to be out of pain and as comfortable as possible. I promised her she could leave when she wanted and this assurance was enough for her to agree.”

“The Inpatient Unit the staff were all brilliant – I cannot praise them enough.”

“Louise arranged everything ahead of her arrival, including having a special fridge in her room for the equipment she needed, and she made sure everything was right for her to be there. The stay at the hospice meant the doctors could change her medication and manage the symptoms as best as possible. Dr Khan cared for mummy whilst she was there, he was from the community palliative care team and had also been out to visit her at home. He really took his time with us, which made such a difference.”

“Everyone at the hospice made us feel so welcome – they even made my two young daughters feel relaxed. It didn’t feel like they were in a hospital so they were able to make the most of the visits without being scared. The team went the extra mile, making them special drinks, providing biscuits and even giving them a teddy bear each, as a little Christmas gift. It was all of these little touches that made this time just that little bit easier.”


Hospice at Home steps in

“Mummy came home from the hospice in time for Christmas and went back to the family home in Loughton. The community team stayed in touch with us from the moment she was discharged – calling us regularly and checking in to see how she was feeling. They even made changes to her medication if needed. St Clare liaised with all the other healthcare teams, the GP and the district nurses, taking the responsibility from us and keeping everything under control. Knowing everyone was on the same page so mummy could have the care she needed and deserved, was like having a weight lifted from our shoulders.”

“I don’t know what we would have done without St Clare Hospice. They gave us back control as a family, by taking hold of the situation.”

“Mummy had made it very clear to all of us that she wanted to be at home until the end and we were keen to honour her wishes. Six weeks later, mummy decided she didn’t want to have the intravenous feed anymore. This was when the Hospice at Home team stepped in.”

“For us, as a family, the support of St Clare Hospice at Home team when we needed it the most demonstrated just how amazing and important the work is that they do.”

“The Hospice at Home team were with us on the last part of mummy’s journey – and this is what we will remember the most. The nursing assistants came twice a day to offer personal care, and they also made sure we had a night sitter stay with us, every night for the last two weeks of mummy’s life.”

“My sister, Natasha, and I stayed with our parents those last two weeks. We are a very close family and I just couldn’t see us not all being together – it was an automatic reaction. When the Hospice at Home team came, they would always spend time talking to me and Natasha making sure we were ok, checking in with us. They weren’t just there to care for mummy – they were there to give emotional support to the whole family too.”

“One of the night sitters, in particular, we will never forget was Pauline. She was our rock – without Pauline, we wouldn’t have managed.”

“Mummy took a real shining to Pauline – although she couldn’t say much, you could tell she was so comfortable with her. All the nursing assistants had their amazing ways, but Pauline could manage, all by herself, to get mummy into a comfortable position – which I always struggled to do myself. She was brilliant, and we are very, very grateful to her.”

“In February 2019, at just 59 years young, 18 months after first being diagnosed with cancer, our mummy lost her battle. Pauline was with us the night she passed away. In all honestly, I don’t know what we would have done without her there holding our hands. She arranged everything, including calling the doctor, and stayed with us after he had left – even though it was the middle of the night.”

“With the help of the Hospice at Home team we were able to honour our promise and mummy’s last wish – and for this we will be eternally grateful.”

“I had never even heard of St Clare Hospice. You only find out when circumstances lead you to need their help. I just wish more people, perhaps those reading my story, will find out about their local hospice – so that, should they ever be in a situation like ours, they will ask their hospice for help as soon as their loved one is diagnosed with an incurable illness.”

“You think of a hospice as a place for elderly, not younger people. Not people like my mummy. But you just never know.”

“What St Clare Hospice does is just amazing. We just cannot thank them all enough for what they did for our family.”

– Carley


Walking in Memory

“We took part in St Clare Hospice’s first-ever Walking in Memory event in honour of my mum, Michelle, in September 2019.”

“I read about the Walking in Memory event in the St Clare newsletter and asked my dad and sister if they wanted to do it, and they said yes. When we booked our tickets, we decided that we also wanted to try and raise sponsorship for the Hospice – so we set up our own fundraising page online.”

“I shared my fundraising page on my social media account, and amazingly, within just two hours I had already reached our original £1,000 target! I just kept putting the target up higher, and in the end we raised over an incredible £8,000.”

“On the day of the walk, there were more than thirty friends and family in our group. My daughters took part, as well as my nephews, and lots of our friends brought their kids too. We each carried a really pretty windmill, and when we finished the walk we wrote a message on the windmill and put them in the ground in the Hospice gardens. All the windmills looked so beautiful placed in the gardens, it was a lovely thing to do.”

“There was a special atmosphere on the day, with so many people gathering to remember people they love, and it was made even better by the wonderful sunny weather!”

“We will be taking part again this summer, and encourage everyone who joins us to try and raise as much sponsorship as they possibly can. Getting sponsorship from friends, family and colleagues, really does make you feel more motivated to do the walk. It might only be 5km, but for some people that is a long way!”

“Anything you raise will help to fund the amazing care that St Clare Hospice provides – for local families like ours. You never know when you might need the support of your local hospice, and we really cannot imagine what we would have done without St Clare’s care.”


Sign up to Walking in Memory 2020

Join Carley and her family at this September’s event by signing up here.

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