Marc has neurofibromatosis, or NF1, which caused two tumours near the bottom of his spine. Struggling to manage his pain and also having lost the use of his leg through intense swelling, Marc received the support of our teams, so he and wife Tara could regain some normality and focus on living well.
Marc: A lot of people don’t know what NF is. If you know about the Elephant Man, he’s a prime example. He had NF2, where it disfigures your body. I have mainly NF1, but I have got some NF2 in me. My spine is curved, like the Elephant Man.
“It’s like when you knock your funny bone … but 10 times more painful.”
NF causes tumours directly on your nerves. So it’s like when you knock your funny bone. Imagine that, but 10 times more painful. It’s not nice. The tumours can be cancerous – you don’t know until you do a biopsy.
A worrying time
Marc: In March last year, I had back pain and doctors found a lump on my spine. They said they would remove it, but there was a waiting list. Over the next few months, the pain in my lower back and down my left leg got worse and worse. I was struggling to find a comfortable position in bed and had to sleep sitting upright on the sofa downstairs. I started to use a walking stick, because I couldn’t hold my weight on my left side.
“I had to sleep sitting upright on the sofa downstairs.”
Come the end of August, I had to stop working. We had several trips to A&E, as I was increasingly worried about losing my leg. Eventually, after an emergency MRI, I was admitted to hospital and a specialist found a second tumour: a nerve sheath tumour, which is a type of sarcoma. This had crushed a vein in my leg, which made it swell. I couldn’t even bend my leg without being in pain. The doctors began to get my pain relief under control, and within four days I was having chemo.
Help with managing pain
Help with managing pain Tara: Last October, during his treatment, Marc was contacted by the Hospice’s Willen at Home team. To be honest, that first message was scary. I don’t think people really know what goes on at Willen, and we didn’t understand that they were just going to be looking after Marc’s symptoms. We suddenly thought, “Oh my God, are we already at the stage where he’s got to go into the Hospice?”
“Francesca explained it so that we weren’t worrying and we knew what was going on.”
One of the Willen at Home nurses, Francesca, explained it all. She said, “We’re going to be there for Marc for any pain relief he needs. And if we can’t manage that at home, then Marc can come and stay in the Hospice for a bit.” She explained it so that we weren’t worrying and we knew what was going on.
Team effort
Tara: At the beginning of this year Marc’s skin was getting so itchy. We believe it’s because the tumours are on his nerves. Where he was scratching, he’d open a wound up and it would turn into a blister, because the leg was carrying so much fluid.
We called Francesca. That’s when she got Kate from the Hospice’s Lymphoedema service involved. Kate started coming out regularly, sometimes twice a week. She had to bandage Marc’s legs because the blisters just weren’t easing up. That heavy bandaging was what helped to shrink the leg down, along with getting a stent fitted to increase blood flow. Kate also got us a cream that’s helping with the itchiness. It’s under control now.
“Kate helped reduce the swelling in my leg … I can now lay properly.”
Marc: Francesca adapted my pain relief so I could manage to sit down. Then Kate helped reduce the swelling in my leg. Thanks to all of this, I can now lay properly. Not flat, but I can lay in a bed.
Therapy came as a surprise
Therapy came as a surprise Tara: One of the Willen at Home team told us about the Hospice’s Wellbeing service and the different things they do, even for me as a carer. We said we were interested and got booked in. We’ve done Reiki a few times. We’ve had a couple of massages. That’s particularly helped with Marc’s shoulders, because he’s getting a lot of problems with them at the moment.
We had no idea the Hospice did anything like this. We thought it was a place that you came to for your final days.
“We had no idea the Hospice did anything like this.”
I’ve been offered lots of activities and support as well. The Hospice made it very clear that I could have some counselling if I needed it. Francesca even spoke to our son when she saw him at the house and said he was welcome to have counselling at any time.
Support to live well
Tara: From the first time we went to the Hospice, we felt welcome. It’s just a lovely place to come to. When Paul, one of the Therapies team, asked us if we’d be interested in a breathing and relaxation session, we weren’t sure what it would be like, but we thought, “Let’s give it a go.” And it was beautiful.
“Marc felt stuck at home and was getting frustrated. Willen has helped with that.”
When Marc was diagnosed, those first few months were hard for both of us. He felt stuck at home and was getting frustrated. Willen has helped with that. It brings you out of yourself. Francesca said, “Try just going for a coffee” and suggested a good cafe. And we did. Since then, we’ve carried on. Just getting out when we can.
Change in mindset
Marc: I know it takes time to heal – your mindset has to change, but Willen is a great place.
“Willen have made us feel supported, listened to and have taken away the feeling of being on our own.”
Tara: The pain that Marc went through in his journey to diagnosis was traumatising for us as a family to watch. Willen helped us with digesting the shock of it all.
Willen have made us feel supported, listened to and have taken away the feeling of being on our own. As well as inviting us to wellbeing activities, they helped set up a meeting with Citizens Advice to get financial support now that Marc’s no longer working. It’s just so much better now.
