Interview 39

Age at interview: 51

Age at diagnosis: 41

Brief Outline: Diagnosed with colorectal cancer 1991, under went surgery.

She emphasises the need for support after a diagnosis.

I spent the most miserable weekend of my life. I was told on the Friday that I'd got cancer and I then had to get through a weekend before I was in hospital the next week. And I went round all the local bookshops trying to find a book on the subject and didn't find anything. I did buy a book but it was useless. But it was an absolutely miserable weekend. You know, you're walking around with this cancer inside you and you just feel awful.

Uh, and we were going out on the Sunday to a birthday party at a friend's house and I spent the whole time upstairs with the children, it still makes me upset about it, looking at my son. It was uh, that was the worst weekend of my life.

It's, it's really important I think that doctors understand that once you're diagnosed you need support to get, before you're operated on. And it can take several weeks and it's a very upsetting time for people, and it's the time when you probably do need support.

And you need to have the number of somebody you can ring like the specialist nurse, somebody you can contact if, if you're being distressed at that time, or you're finding it difficult to cope. It's just really helpful to find somebody to talk to at that period who can understand what you're going through and has maybe got some ways to help you through it.
 

Describes how she prepared her young son for seeing her in hospital.

Oh, the worst, one of the worst parts for me was being the mother of a young child was, I didn't want my son to see me in hospital with all the tubes in me and somebody suggested to me that I should get him to come, come along to the hospital with me when I was booking in and seeing me in, in my bed, so he'd know where I was, when he didn't see me for the next few days.

And he, we did that and it was nine days before I saw him again when I'd had finally had the tubes out, he came in and he took off all his clothes and got into bed with me and he said "Where's the bad thing they took out your tummy?"

And they had found a very large gallstone uh, when they were uh, operating, it was a big one and I'd kept it by the bedside and I got it out and showed it to him. And he said "Why did you swallow that?" Which was a very sensible question from a three year old.
 

She explains the need for follow-up support after treatment.

I didn't have any um follow-up in the community. I didn't have uh any contact with the GPs unless I went um, because I'd got a twinge or something that worried me. I didn't have any contact from the hospital either, there wasn't a specialist nurse to help me through this. And a lot of people still get very little or no support afterwards, which I think is a shame.

Just to have the phone number of somebody you can ring is very important um, because you are bound to have questions. And I had questions um, that I didn't put to anyone and I'm, they made me more worried. If I'd been able to talk to somebody right away uh, then I could have saved myself quite a few sleepless nights.

Uh, and I think that's why it's so great if you can get a specialist nurse or somebody whose, you've got a phone number of, if you've got worries you can clear them up right away just by ringing them and having a chat, because we all have worries.

And I think nurse-led clinics are a great thing because nurses tend to have more time to talk to you and are more reassuring. And so if you can find a nurse-led clinic that you can go to with your worries, I think this is a really good idea.

Some hospitals now will give you um, a coupon to fill in if you've got a, a problem or a symptom and then you can be in charge of your own follow-up.