Having been suddenly diagnosed with myeloma, a type of blood cancer, and bedbound after a long hospital stay, Debbie couldn’t see any light at the end of the tunnel. Thankfully, with the support of her brother, Derek, and three of our Hospice teams, she’s now setting herself goals and planning a holiday.
During the summer last year, I picked something heavy up at work and hurt my back. The pain got worse and worse, until I could hardly walk. I tried seeing a physio and even went to A&E. Eventually I had a blood test and they realised I had myeloma. I’d fractured my back because the myeloma had damaged my bones.
I was in hospital from October and was able to have a new trial drug. It was so harsh for my body. I was being sick all the time and losing weight. So they stopped it and I had a normal course of chemotherapy. I had sepsis in that time too. But it all worked and I’m now in remission, which means my cancer symptoms are under control at the moment.
“I was referred to Willen Hospice straight away.”
Getting mobile again
I live with my brother, Derek, and when I came out of hospital in December we got a hospital bed delivered for the living room, which has been my bed ever since. I was referred to Willen Hospice straight away.
Because I was in hospital for so long, just lying down, my muscles went. Both legs and one arm were swollen because of lymphoedema. The swelling was awful. I felt like I couldn’t bend my leg because it was so tight. And trying to get up, I felt like I had lead boots on. So Carly, from the Hospice’s Lymphoedema service came round. She gave me some exercises to do and put some compression stockings on. I hate feeling trapped or wearing anything tight so I didn’t think I could cope with them. Carly said, “OK, I’ll do a deal with you. You don’t have to wear the stockings, but you have to do these exercises every day, three times a day, to help reduce the swelling.” And I was lucky that it worked.
“You know that if you say something to [Carly], it’s going to get sorted!”
Carly has kept in contact, to check I’m OK and that the swelling isn’t coming back. She’s very caring. You know that if you say something to her, it’s going to get sorted! I had a physio come to my house from the hospital through Carly’s recommendation. And also my wheelchair – she put an urgent request in and I got it really quickly.
Psychological support
I was very, very low at one point. I couldn’t even lift one leg up. Everyone said that the strength would come back in time and I had to keep going. I knew they were right, but I just couldn’t see it.
“I could see no light at the end of the tunnel.”
My daughter, Ceri, died a few years ago. So with that happening and then getting ill, I felt like I couldn’t be positive anymore. I could see no light at the end of the tunnel. To be honest, I was feeling like if I did die, I didn’t care. But my fight was to keep going for my grandson, because he’s mine and Derek’s world. That was when Carly suggested I speak to Laura, the Hospice’s Clinical Psychologist.
“Laura helped me a lot… She would sit and listen.”
At first, I wasn’t sure. Because I was in that not very good mindset, and I was just negative, negative, negative. But I’m so glad I said yes. Laura helped me a lot. The first time she came round, I was a mess and a bit tearful for the whole session pretty much. But she was so good. She would sit and listen.
Rollercoaster of emotions
Laura made me see things more positively. I’d say something to her and she’d say, “Right, what if we reverse that?” It’s having a different mindset. At first you think you can’t. Then all of a sudden you realise you can. When Laura wasn’t here, I started trying to practise what she was saying and it did work eventually. She’s got a calming way about her. Everyone from the Hospice makes you feel at ease. You feel like you can tell them anything, and you feel safe.
“Everyone from the Hospice makes you feel at ease.”
It’s been a real big rollercoaster, but I can now see the light. When Carly visited last week, she couldn’t believe that I’d been out in the wheelchair. Even if at first Derek and I would just walk around the green outside the house with the dog. I could get some fresh air and not just see the same four walls.
Immediate help
The communication between the Hospice teams is amazing. If I ring up and say my name, they know me. They do their jobs brilliantly.
At one point my tablets got increased so we were using more and we ran out. I was two days without them and I didn’t realise the side effects. I started feeling anxious. I thought, “Right, I’ll ring the Willen at Home team – they’ll know what to do.” So I rang and a nurse answered straight away. She said to leave it with her. She didn’t just sort it out; everything she did, she’d ring me back and tell me what she’d done. I wasn’t waiting and waiting for a phone call. By the end of the day, I had the tablets. Because of her.
Progress and goals
Normally my hospital appointments would involve an ambulance taking me. They’d come in and put me on a ‘mega mover’, which is like a huge carrier bag with handles. But for the very first time yesterday, I walked into the hospital using my rollator [a wheeled walking frame]. That was amazing.
I’m sort of mastering walking upstairs. It’s really hard. Putting one foot up and then your other leg’s got to take your whole weight. You don’t realise how much you take for granted. But I’ll get there. Because that’s my goal – getting back upstairs to sleep in my bedroom. We’re already thinking about a trip to Wales to see family too.
“I certainly wouldn’t be in this position now if it wasn’t for Willen.”
I knew I had support from Derek, my next-door neighbour and my friends, but sometimes I was pushing people away. I didn’t want to see them. But obviously, seeing the Hospice teams, I had no choice because they were coming! And it was great. I feel like I could have given up without the support of all of them. So much has happened between January and now. I certainly wouldn’t be in this position now if it wasn’t for Willen.
