Dani has been seeing Carly, one the Willen Hospice lymphoedema nurses, since 2021. After having radiotherapy for cancer, Dani developed swelling in her arm and hand. Carly’s expert treatment and advice mean Dani now has the confidence to manage her lymphoedema herself.
It all happened so quickly. In September 2020 I was diagnosed with inflammatory breast cancer in my right breast and started chemotherapy. The following March I had a mastectomy and was recovering from that when I started to get headaches. Then they found the tumour in my brain. I went on to have a type of brain surgery called a craniotomy, which was quite unusual because I had to be awake for it. They gave me a couple of weeks to heal and then put me on radiotherapy.
I’d never even heard of lymphoedema. After my radiotherapy I started to get a bit of swelling in my right arm. It was very mild at first. I got referred to the Hospice’s Lymphoedema clinic and met Carly. The first time Carly explained to me what lymphoedema was, I burst into tears. It was a shock because I knew nothing about it. I thought it was just a bit of fluid. Then I imagined that my arm would get bigger and bigger. It was a lot to try to understand and take in. I remember breaking down.
The swelling increased over time and my hand has become the biggest issue. Initially I was on a high level of steroids for my brain tumour, and I gained so much weight, which didn’t help. The swelling in my arm got worse and moved down into my hand.
It’s as if you’ve got your hand in a glove, but it wants to pop open, like the Hulk bursting out of his outfit. That’s how my hand feels a lot of the time. Recently I had a wrap [special compression bandaging] every three days and came in to use the machine, which massages my arm using air pressure. I had five sessions over two weeks and at the end my arm had reduced in size. Carly measures it at each session.
My goal is to get my hand back down to a normal size. The discomfort of my arm swelling – that I can handle. But I need to get my hand back, because I use a computer in my day job. So if it means I have put in extra effort to reach my goal, then I’ll do that.
I’ve got several compression sleeves that the clinic had made specially for me. I wear one of those all day. One comes to my wrist and one comes to the knuckles of my hand. Then I have extra wraps I can put over the top. I don’t usually wear anything at night, but if I’m having a really uncomfortable day where my hand is over-swollen, I’ll put a special glove on overnight. Usually by morning my hand’s gone back down again.
The more I move my arm, the better it is. I started playing lawn bowls a couple of weeks ago, just to try and help my arm, and to be the youngest member of the club! I’m really enjoying it. I haven’t got much grip, but I noticed that it made my arm feel better for that day. I want to get back to playing ladies football again, but at the moment I feel so unfit. Bowls is helping me build up my stamina.
There have been some really down times, and it’s actually Carly who’s been there for me. She spotted that my mood changed a bit, with everything that was going on, and she referred me back to the hospital to speak to a MacMillan nurse. And again, it was Carly who spotted that I’d got an infection from the radiotherapy and sent me to hospital to get checked out. I’m really grateful for everything she’s done for me.
It’s not just the job the lymphoedema nurses do to try to fix you, but the wellbeing support they give. They explain everything, even if sometimes you don’t want to hear it. What’s really lovely is that they’re always at the end of the phone if something’s not quite right. What they do here at the clinic, it’s just phenomenal. I’m very, very thankful.
