Alison's story

Ahead of Lymphoedema Awareness Week, we caught up with Alison, who attends our Lymphoedema clinic here at the Hospice. In our candid chat, Alison tells us how our service has helped her feel normal again and boosted her body confidence.

 Following an operation to remove cancer from her neck, which was a very invasive procedure, Alison developed Lymphoedema, which causes swelling and tenderness across her face and neck.

She explains; 'The operation last May did quite a lot of things to me, including cutting a nerve diverting my jugular, removing cancer and removing lymph nodes. I suppose it (lymphoedema) was always a possibility. The consultant explained that he would need to make some sacrifices. He said we can't tell until we get in there, but I may have to remove other lymph nodes and sever a nerve.'
Following the procedure, Alison underwent physiotherapy as the severed nerve caused pain right from the ear, down her neck and into her shoulder. After a course of radiotherapy, Alison asked her oncologist if the swelling she was experiencing was from the operation or from radiotherapy as it was so painful to touch. It was at this point Alison was told the swelling was actually caused by Lymphoedema and she would be referred to the Hospice's clinic for treatment.
Alison told us; 'My old physiotherapist told me if I was on the lymphoedema case load I would be seeing Rachel and she's the best.'

With high hopes at finally having a diagnosis so she could begin her road to recovery, Alison asked two of her care providers a very important question. She said; 'Looking ahead it would be really nice if I could book a holiday, when do you think I will be back to normal?'
Alison explains 'They looked at me like, you'll never be back to normal. They probably meant well when they said it. They had such pity in their eyes, like this poor woman, she's just not understood the extent of what has happened to her.' 

Alison has had seven sessions with Rachel and has had various treatments including lymphatic drainage massage, kinesio tape, and a hereford collar, which she tries to wear at least once a day. We asked Alison how she feels now and whether her condition has improved. She told us;

'I feel really normal, I feel really well. Yes I've got stiffness in my neck and a sort of prickly type feeling, but it is much relieved when I see Rachel at the Lympohedema Clinic. As well as being an expert in the manual lymphatic drainage, she is a expert physiotherapist. Following the first time I saw her,  she talked me through it. For the first time in months I have an awareness of what the different discomfort is; which is nerve, which is post op scar tissue pain and which is Lymphoedema, because before I just had no idea.'

As well as attending our Lymphoedema Clinic on a weekly basis, Alison also goes to a lymphoedema swimming group at Featherstone leisure centre. 

' There were eight of us last night, and it happens every Monday evening. Rachel is there and they have a wonderful volunteer from the Hospice named Terry. Cancer treatment is a lonely journey, and the exercising is much more fun with other people. I had  never met anyone with lymphoedema , and although I'm the only one of the group with face and neck lymphoedema, it is good to see people and to get active in the water.'

As we said our goodbyes to Alison, we asked her the biggest way that our service had helped her. she told us; 'My confidence in my body  has improved, partly because of the lymohoedema side, but partly because of Rachel's physiotherapy skills. They are welcome because it is a big thing. My shoulder has dropped, which might not be noticeable to you looking at me, but my shoulder has dropped because of the nerve damage and there are certain movements that are really tricky to do. She does a little shoulder and neck massage for me and its just right. I think it was what I needed after my operation.'
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