Lisa is a patient of The J’s Hospice and very kindly shares her experiences with us…
Lisa, an outgoing mum of one, was first diagnosed with amyloidosis 11 years ago, soon after the birth of her daughter. It presented as a build up of protein in her blood in her neck and chest area and she was told that intense chemotherapy was necessary to treat it. Her family and friends rallied around and she was able to manage childcare and hospital appointments with their help and support.
Nine years later, Lisa’s life was back on track when a simple bad back, which she first attributed to a new bed, led to a further scan and a check up.
‘I had another bone marrow biopsy, and then they found the multiple myeloma, which can be linked to amyloidosis.’
This time, the diagnosis and treatment affected her daughter as much as Lisa and she was understandably upset when discussing the impact her illness and treatment has had on her.
‘It is hard because my daughter doesn’t have much contact with her dad, but I have great friends and family – all my friends used to come around every week, every Wednesday, when I had chemotherapy….She is a good girl, actually, very strong.’
Things finally began to look up in terms of support when Lisa noticed a collecting tin for The J’s Hospice on a bar – she took down the number and called the next day. Within just two days she was delighted that someone had come out to visit her and outline the service.
‘The J’s have been brilliant, from the day I made the phone call they’ve been here with me. Any time I needed to talk to someone they’ve been there.’
As time went on, Lisa’s daughter found it harder to cope and Lisa described her daughter’s growing anger issues. The J’s were able to offer her music therapy as a way to manage her anger about her mother’s condition and it worked so well that she requested a second course!
Lisa has had ongoing care and support from The J’s Clinical Nurse Specialist as well as reflexology, counselling and music therapy for her daughter.
‘I’ve had reflexology and counselling from The J’s – everything that’s made me feel important again. Mary (The J’s Hospice nurse) would always come with me to hospital appointments – it’s very personal, I feel like they’re part of my family.’
When asked why, in Lisa’s opinion, a young adult hospice is needed;
‘There’s lots of people my age who go through this and they have problems, the same as I have. It’s a scary thing. When you’re young and have got a child, you feel quite alone, even though I’ve got a brilliant family and friends. You don’t always want to talk to them; you prefer to talk to someone outside of that network.
‘I wouldn’t have got through what I have without the support from The J’s… for my daughter, the caring, the support… everything.’
With thanks to Lisa and The J’s Hospice for allowing us to reproduce this article here.