(For treatment side effects and complications only)
[*MASCC is the Multinational Association of Supportive Care in Cancer.]
Our award-winning Enhanced Supportive Care team aim to:
The Enhanced Supportive Care (ESC) team includes health professionals from a wide range of fields. In September 2021, they won the HSJ Value Award for Specialist Service Redesign for their pioneering role in leading the way on ESC nationally.
I was diagnosed with cancer just as the COVID pandemic started. I’d been to the GP about 18 months earlier and mentioned in passing to one of the nurses there that I had an enlarged tonsil. She had a look and said not to worry but to keep an eye on it. Just as COVID started, my tonsil seemed to start growing. At first I thought it was just my imagination but I went back to the GP and saw a really nice doctor who did a rapid referral for me to the Ear, Nose & Throat (ENT) team for me to be seen within two weeks.
I’d lost my daughter 14 years ago to ovarian cancer so it was on my mind and I like to be forewarned so I asked the doctors to tell me straight. The ENT doctor referred me to a surgeon who said she did think it was cancer but we couldn’t be sure without a biopsy. It all happened very quickly and she explained that, to be safe, it would be best to remove the tonsil and lymph nodes on the left side between by ear and my chin in case it had spread. I had 25 lymph nodes removed and one of them had cancer.
I sailed through the diagnosis and surgery and was referred for six sessions of radiotherapy at the new Clatterbridge Cancer Centre in Liverpool but the recovery afterwards wasn’t very pleasant. The operation involved cutting in a J from my ear down under my chin and the surgeon had explained to be beforehand that there were a lot of nerves there that could be affected. As well as that, radiotherapy can damage your skin and I had burning sensations on my neck and inside my skin.
It wasn’t nice but I thought it was a walk in the park compared to what I’d seen my daughter go through. As I recovered, I had a lot of nerve pain – like an electric shock if I touched my ear. I couldn’t wear earrings. The pain would feel like someone had just come up and smacked me on the chin. My neck was numb but tingling and alive. It was very unpleasant – like constant toothache. I had back pain as well.
Because of the pain, my surgeon referred me to Dr Seamus Coyle, a Consultant in the Supportive Care team at The Clatterbridge Cancer Centre. He explained that the back pain was a muscle in spasm and the neck pain was from the nerve behind my ear and recommended I try a massage gun. I’ve got to say it was incredible. My partner, Terry, would use it to massage my neck and it was amazing what it did. Dr Coyle told me what exercises to do to help with the pain. He spoke to me in my language and arranged physiotherapy, which I’m still having.
The Supportive Care team have also helped with my eating. After treatment, I found it very difficult to eat and I lost three stone. They advised me about soft things I could eat like rice pudding and ice cream to get my strength back.
Dr Coyle has been fantastic and he’s really helped with the pain. I still have tingling in my ear but it’s not as bad as before and I can wear earrings again. He also recommended an acupuncture gun which massages with little needles and that helps too. It’s made a load of difference. Before, I couldn’t lay on my left side in bed. I have slight lymphoedema in my neck from having the lymph nodes removed. I’ve been using oil to massage my neck to help with that and every time I see the surgeon she says how much better it’s doing.
Without Dr Coyle and the team doing what they’ve done for me, I don’t know where I would be. The Supportive Care service has really helped me.
Kate Morley was diagnosed with advanced cervical cancer in June 2021. It came as a total shock. “I’d had a breast lump in April which turned out to be a cyst but my bloods weren’t right so I was sent for more tests and scans, and then a PET scan. It all happened in a matter of weeks. I was called into Fazakerley and told my lymph nodes weren’t right all the way from my chest to my cervix, and then I went to the Women’s for a PET scan.
“Within two days I was told I had cervical cancer and then the biopsy showed it had spread to my pelvis. It was a bit of a shock. They referred me to The Clatterbridge Cancer Centre and my consultant, Dr Karen Whitmarsh, was fantastic. She explained everything and I said I liked to be told things as they were. She explained it was stage 4 and terminal.
“I was absolutely devastated. I was in tremendous pain and I was thinking, ‘I’ve got three children and I don’t want to die’, but this hospital has changed my life. I wanted to have chemotherapy and the service I’ve had has been 1000%.
“After five sessions of radiotherapy to help with the pain, Dr Whitmarsh referred me to Dr Seamus Coyle for supportive care. When I went to see him, I couldn’t even walk because I was still in so much pain. He asked me where it was hurting, massaged me and asked what was happening to the pain and the difference was unbelievable. I’m not joking – the pain just went.
“The Supportive Care team have been incredible. I’ve had so much support, not just with the pain. They’ve helped me with every aspect of it. I’ve been in hospital for a few days and they’ve been to see me two or three times a day to see how I am. Even just their manner – they listen, they have time and they see things through to the end. You can be honest and say how you really feel.
“I came in scared, terrified and thought I was about to die within a week but the amount of support you get is unbelievable. Dr Coyle put me on a new drug for the pain, which has been fantastic and has helped so much. Some days are better than others and they know that – they tweak my medication every day to make sure I’m okay. They arranged a bag with a device in it that helps me control my pain without needing to walk around hooked up to a drip. They’ve also helped with other problems – like eating little and often when I don’t have an appetite or sorting out issues with my digestion and my catheter. Dr Coyle lent me a massage gun which helped tremendously and I’ve had reiki and acupuncture which has changed my life.
“The care they give is second to none and I’d say to any other patients going through the same thing, give them a go because it really works. Being in this position is really daunting – you feel scared but you’ll be okay. These people here in the Supportive Care team, they can help you so ask to be referred to them.”