Tony Grover

Location

Fakenham

Condition

Sarcoma

What happened

Two years ago Tony noticed a lump at the top of his leg. He was immediately referred to the Norfolk and Norwich University Hospital for a biopsy. This is his story.

My worst fears were confirmed when I was told I had cancer. Sarcoma. I was shocked to find out that it’s one of the rarest forms of cancer and accounts for only 1% of cancers throughout the country. Plus, within that 1% there’s around 50 types of different sarcoma.

I was treated with radiotherapy, followed by an operation. I had the radiotherapy in Norwich in order to shrink the tumour before the operation. It was the size of an aubergine. The radiotherapy reduced it by one third.

The operation caused some damage to the main nerve and some muscle was sacrificed. I have some problems walking now, with a lack of feeling in my thigh and tingling down my leg. I struggle to run and have to take my time walking down stairs.

The Consultant at the Colney Centre introduced me to the Big C Centre. My wife and I found it really helpful. We used it when I went to the hospital for treatment. It was a place of respite; to take time around appointments. It’s a place to just go and sit, think, chat, have tea. The staff are friendly, accommodating and willing to help.

The most comforting part of the Centre is the fact that cancer is already a given. You don’t have to explain to every person you meet how you are - it’s already understood. Plus they weren’t just there for me - my wife needed them as much as I did, perhaps more. As I wasn’t able to work it was also great to know I didn’t have to pay but could choose to make a donation if I wanted to. My wife has been doing a lot of that since - helping fundraise, donation collections and helping out with the Fakenham Christmas Tree Festival.

I’m having 6 monthly CT scans now. They got the cancer out and I’m being monitored. I’m also back at work, after having around 5 months off. I took time off initially during my radiotherapy, when the lethargy got too much, but went back to work before my operation. It was a distraction more than anything. Then I had four-and-a-half-months off after the operation. I was lucky to have such a supportive workplace and sick pay. I know many people aren’t as lucky. Cancer is expensive. Trips to the hospital, parking and having to take time off work all adds up.

Big C continued supporting me in a different way too. They’ve helped me to set up a Sarcoma Support Group at the Big C Centre, in Norwich. I don’t pay for the room which helps and so far we’ve had two meetings with six people at both sessions. It’s the only sarcoma support group in the county as the cancer is so rare. But while there’s a need we’ll be running the group. We’ve had an enquiry from Suffolk too so there’s talk of splitting meetings between Norfolk and Suffolk or a sub-group. It’s good to know I’m helping people going through the same things as me.

East Anglia Sarcoma Support Network meet on the last Friday of every month at the Big C Centre, Norwich, NNUH between 1pm and 3pm.

For more information email: eassn@talktalk.net or call 07941 434351.