Michelle’s experiences over the last few months and her refreshingly positive attitude are as incredible as they are inspiring. Back in October 2019 Michelle Rawlings, a 44 year-old mum of two from Harpenden, openly shared her feelings about her state of mind. Following her most recent stay on our Inpatient Unit, Michelle took the time to chat with us about the rollercoaster of ups and downs that she has recently experienced at her favourite spot in the Hospice gardens, the storyteller’s chair.
“I feel like a different person. What am I going to miss? It’s the love that’s felt here. It’s not just love for me, but all the patients. You notice things (being nosey like me!) - the care and love is remarkable. When I was last at the Hospice I was withdrawn. Locked-in. In total despair. I couldn’t understand how someone could live every day with a life-limiting illness. How do you wake up knowing you’re dying, but still enjoy good times with family and friends? It was incomprehensible. The Hospice staff helped give me the strength. This is your life, there are positives, and you CAN live it well. You don’t have to let a prognosis rule you. You don’t sit and dwell on it – When I left in October I put my boots on, make-up, wig, and that was the start. Every day I got up with this attitude and continued my life and family relationships. I think about it in the middle of the night, when I can’t sleep; there are others who aren’t here when they’d want to be – but I am. I’ve been given extra time with the people I love, and they’re happy I’m back to being myself and engaging with them.”
“Things changed at the start of the year, when I took a chemo break. We took the difficult decision that my body couldn’t handle much more of the toxic treatment, and the tumours started to grow back, especially an aggressive recurrence behind my leg which was growing inside and out. The pain was so bad I just wanted to rip my leg off. It put real strain on Dean, my husband, who was having to inject my pain relief and reverted back to being my carer. I was fighting pain all the time and becoming unhappy. All I thought about was when the next pain relief would come – it was all encompassing. The most difficult thing was hiding the pain from everyone.”
After another unsuccessful round of chemo, fresh scans in May suggested Michelle’s prognosis was devastatingly 2-3 months. It was at this point that her GP contacted Dr Sharon Chadwick at the Hospice with an update on the situation.
“I had to go home and tell the children the news. They could see I was in pain. The tumour on my leg had broken through the skin and was constantly bleeding. The dressing was being changed twice daily and I couldn’t sit still with the pain. The morphine wasn’t stopping it, and after an attempt at a nerve block, amputation was suggested.”
“Sharon talked me through the options and all it took was 10 minutes. Of course I thought about it a lot and it was a scary decision, but I trusted them. Ultimately it was my decision. The alternative was sedation and huge pain relief. Even out of work hours Sharon was thinking of me - that aspect of the care is remarkable, it’s above and beyond. She spoke to the surgeon at Watford Hospital and made it happen – and the amputation has saved my life. It’s given me all this extra time. It was a bit of a whirlwind. We spoke on the Wednesday; at the weekend I performed a hand-tying ceremony at my sister’s wedding, and by the following Wednesday I was having surgery. The worst part was waking up to the post-op pain, but once I was on the recovery ward I felt so much better. Almost immediately I felt brilliant. I spoke to Sharon that week and the first thing I said was ‘when can I come back to the Hospice?’ and she had me there three days after surgery. I was like a completely different person – it changed my life. Due to the pandemic restrictions I wasn’t allowed visitors at the hospital (something which the Hospice are able to facilitate on a limited basis), but once my husband Dean saw me he was buzzing; ‘She’s Michelle again’. Things had deteriorated but I had returned to me again, and my relationships were back.”
After a ‘terrifying’ set back a week ago when spinal inflammation caused paralysis from the chest down, and a trip back to Watford Hospital for an MRI scan, the Hospice arranged for Michelle to return to the IPU, and managed her treatment alongside her oncologist.
“It’s strange to say it, but I love it at the Hospice. During the set-back Dr Chadwick and Dr Gascoigne were gutted and so worried for me. They are so committed to the care. I was lying there thinking ‘is this it?’ But I’ve been nurtured back and yesterday I was able to walk down the corridor. Major surgery was not even four weeks ago, but I’m planning a test-visit for a Saturday night sleepover with my children, and all being well I’ll be able to go home. I’ve been face-timing them but haven’t actually seen them in weeks! I’ve had times when I’ve been crying at 5am, missing my boys, but the nurses would sit and chat; hold my hand, and help me through it. I share their fantastic sense of humour and we’ve had a great laugh. They have such challenging jobs, but they really love what they do. From the consultants, to the nurses, volunteers and gardeners, everyone has been amazing. They really care for you. And you can’t beat it. I’ve come away feeling so tranquil and peaceful, which it thanks to them. They’ve changed my life.”
Medical Director and Hospice Deputy CEO, Dr Sharon Chadwick has been instrumental in Michelle’s specialist care. “Michelle is simply extraordinary. Throughout her illness despite escalating levels of pain due to the tumour behind her knee she has been cheerful and determined and faced the challenges that come alongside severe physical symptoms and having long courses of chemotherapy and radiotherapy with determination and resilience. When despite all our best efforts including a nerve block from our visiting anaesthetist Dr Paul Hart the pain became intolerable, we found ourselves in the position where amputation of the affected leg was the best option for giving Michelle the quality of life she deserves.”
“After the initial shock and having talked it through, Michelle gave me permission to make the referral for the amputation - the first time I have taken this step in my 17 years as a palliative care doctor. Michelle sailed through the operation and the relief it gave from the unimaginable pain was clear to see even in the first few days after the surgery. Her family said that we had given them Michelle back. She will be going home in the next few days and can look forward to having the quality of life that she has craved whilst continuing under the care of the teams who have worked so hard together to support her through this difficult time.”
“Thank you Michelle for being such an inspiration and for reminding me to be brave as a doctor in supporting what might seem unthinkable decisions in order to achieve the best outcome for those we care for.”
Sadly, since sharing her story, Michelle passed away in autumn 2020 with the support of the Hospice. We are grateful to Michelle’s family for giving permission for her story to continue being shared.
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