Wendy's story

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Wendy on her radiotherapy treatment for ACC, living with necrosis, and why she finds the SGC UK meetings a support.

ACC diagnosis

My name’s Wendy, I’m sixty-three, and I was diagnosed in 2016. It just started off with a tingly lip and in the end I found out that I had the ACC in my nasopharynx and also dural involvement, which is the outer lining of the brain.

It was inoperable, and so I was given 30 sessions of a high-dose radiotherapy. After that I lost the taste of things for just a little while, and then I was absolutely fine, until last September. So I started to get a bit dizzy, and a few headaches, and that’s when they discovered that I had what they call necrosis in my frontal lobe, which was caused by the radiotherapy unfortunately. Both have been treated now, and I’m stable at the moment so that’s good.

Having inoperable cancer

None of us know how long in life we’re going to last for, and I don’t want to be miserable. So I try to do everything I can to be happy and to keep everybody I know happy.

I’m lucky enough – in a funny way – because I couldn’t be operated on – my family didn’t have to go through looking after me. Because it doesn’t react to the chemotherapy, I didn’t have the sickness and the illness. So I count myself as lucky. Certain things have happened that have changed my life – but I’m still living, and I’m still getting on with it as much as I can.

How SGC UK helps

It’s nice to be able to talk to other people that have got this problem. The first time we had a meeting in Manchester I actually got my husband to come along, because my husband’s been in denial.

But when he came to that meeting with me he was able to talk to wives, or husbands, or children (you know, grown-up children) and obviously he got other people’s views on how they were dealing with the situation, and the problems they had, which in actual fact has helped us as well now, because he looks at it slightly differently as well.

Also for him, he was able to meet people like me that tried to keep happy and carry on with their life. You can really open up, and really sort of talk to them, to find out how they’re feeling, and how they’re dealing with things. How their consultants are reacting, if they’re offering any other sort of treatment. It just helps to make things more available to you, you know, and you try and help each other.

Living with necrosis

The necrosis had caused me to be off balance. I don’t want to sit in doors all the time. The worst thing is not being able to drive. I really miss that. But get yourself a walking stick, and get yourself a friend that will let you link arms, and you’re OK.