Thursday 30 Jan 2020
When my doctor told me to join the head and neck cancer support group at Maggie's, I didn't think it would be for me. I couldn't have been more wrong.
I was diagnosed with mouth cancer in 2018. One of the first things I thought was, will people think I have a dirty mouth or haven’t taken care of my mouth?
Of course, it has nothing to do with that. All the same, when I said I had mouth cancer, people were sympathetic, but the initial reaction was curiosity and blame.
The first thing people asked me was, "What did you do? Did you smoke?" With mouth cancer, people were looking for a reason or a cause instead of just bad luck.
There shouldn’t be a stigma around any cancer. Nobody asks for it, nobody deserves it.
I was warned that the treatment was harsh and brutal, and the oncologist told me to prepare myself. Where the tumour was, it couldn’t be removed. So I had 30 sessions of radiotherapy, every day for six weeks. I had two sessions of chemotherapy that I had to stay overnight for.
The things nobody tells you about mouth cancer, is that you have to find your new normal after treatment.
Yes you go back to normal but it’s a different normal. It really was a recovery from the treatment.
My mouth cancer nurse specialist said to me "Why don’t you come along to the head and neck group at the Maggie’s centre?" And I thought I’m not really a support group type of person. I was thinking everyone would be sitting in a circle bearing their soul, but it couldn’t be further from the truth.
When I first went, I didn’t say much but I went along. And I listened. I thought, right I’m coming back. I go every month and I love it and I’ve made great friends.
The first thing I do is make a cup of tea and we go in and sit down and it’s just such an easy place to feel at home and feel comfortable. Everyone understands what you’re going through.
We go to that group and we can talk about anything and we know anything we say is confidential and taken seriously.
Because I’m a single parent, I kept it all in. I didn’t want to worry or burden my daughter, so I had to stay strong. But I have the group to go to release and talk openly about how I’m feeling.
To go there and speak to people who have been through the same thing and share their experiences with me was invaluable.
I got lots of hints and tips to overcome the dry mouth, the taste buds, how to get back to enjoying food and all sorts. Now I’m much better, I feel like I’m the one passing on my experiences to people who have just finished their treatment.
The people I saw when I first joined, they all looked so well, and I thought I’m never going to be like that I’m so ill. And now here I am on the other side and looking well.
If you have a head and neck cancer, go and find the head and neck support group at your nearest Maggie’s and go with an open mind. Listen to other people’s journeys and experiences because that is invaluable and arm yourself with as much information as possible.
I’m back at work now and getting back to normality with the help of my support group at Maggie’s. But I’m determined to continue to raise awareness of mouth cancer and break down those stigmas.
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