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 hed 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 “Wheres 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.

I think which was a terrible mistake that my daughter unfortunately overheard and, I think that made her very angry and I think I underestimated the intelligence of my children and caused them greater concern by not being honest with them.

My son went through a long, long period, a number of years of, of not being able to sleep very well and being frightened that I was going to be taken away from him. And I think a lot of that may very well have been born of the fact that they knew something more was going on than I had told them and I believe that made them insecure.

But on reflection not even knowing exactly what the outcome would be, it would have been better to have sat the children down and explained to them precisely what was happening because even at their ages of six and nine, their imaginations must have been going mega-time. And that wasn’t being the right, that wasn’t the right way to have dealt with them.

I think that people need to make their children aware that there are many cancers and situations with cancer that you are fully cured. That to explain it through to the children and the process and maybe even have the children understood that their, their being there for you and everyone working together is important.

I know they know what’s going on but because I look so well its difficult for them to even think about me dying because I look so well, are you with me?

Yes.

You know. Probably if I ever get to the stage where I’m like can’t get out my bed and I’m so ill and, they’ll probably accept it and hopefully they’ll accept it.

You know, its not as if we don’t talk about it, I talk about it often, you know. Just odd little things come out and I say to them “Do you know that when people die they go up to heaven and become stars” and stuff like that to the little one. She goes “yeah”. I say, “well I’ll be the brightest star up there”. I say, “so when you do your running I’ll be blowing behind you so you run that little bit quicker.”

And and say things like that so, you know, and things like you know “You can talk to me if mummy dies. I won’t be able to answer you back but you know I’ll be there, don’t you?” She goes “yeah”.

So you know I’ve got things like that sorted out and I say to her “You know the funerals going to be really sad if and when,” that’s what I say now “if and when I die.”

You know, so that’s pretty much sorted out and I’ve left them sort of a, I’ve done them boxes and that with photos and little bits in and letters and stuff, that they are to have if anything happens to me, little memory things. So I’ve done all that.

We discussed with my surgeon, I told him that my children were in the middle of exams and I didn’t want them to like have such a shock, could we just hold on until after the operation so that I could prepare them.

So I thought that was easier, I mean not that anything is going to be easy but it was better than saying “Well it’s like cancer” and you know the big shock of it.

And despite what I was going through I just wanted everything else to be normal around me, not realising the impact it had on the others and how they were looking at me and they were trying to see if I was going to be alright.

But in all the time I was bringing myself out of my body and wanting to be, everything to be normal and wanted, wanted my children to just get on with their studies. And my daughter actually said to me “Mum I really would even give up my, not do my exams this year to stay and look after you.” I said “No, no, no that’s the worst thing you can do, that will just make me worse. I’ll only get better if I can see you getting on with your life and with your exam and if I know that everything is going smoothly I can get better.”

I then had to tell the daughters. My eldest daughter is 19 and shes very independent. She assimilated the news, just gave me a hug and just said “Let me know if there is anything I can do to help you.”

The younger daughter’s only 15. She acts like an absolute hard-case but underneath shes quite sensitive and the impact on her I knew was going to be much harder because um, I’m one of the few people that she admits to respecting. I think her head teacher, one or two other people but she doesn’t have a lot of respect for a lot of people um, shes pretty, shes on the verge of being a little bit wild but underneath shes basically good. And she knows that she needs my controlling influence even though she doesn’t, doesn’t like it, she knows she needs it!

Also um she has a horse and I finance the horse and I drive her to horse shows and this was a major part of her life and I made it clear that if I wasn’t gonna be working we probably wouldn’t have enough money to keep the horse and that very big part of her life, it’s been a big part of her life for the last four years, would probably have to end.

She took it very stoically and again, she gave me a hug and said she understood but I think it must have been a huge blow to her, a huge blow. She has a, a close friend whose mother died of cancer about three years ago and shes seen the effect it’s had on her friend. Shes 15 and I can only guess the effect it had on her, but she wasn’t gonna show it.

Nobody, nobody will get near him for an endoscopy I can tell you that, he just wouldn’t understand. It’s , it’s tricky cutting his toe nails.

Hes very good at the dentist, I think probably because you know I do his teeth morning and night anyway so I believe you can have an endoscopy under anaesthetic so I’ll think about that one at a later date.

I mean I will watch his stools and theres certainly no problem there at the moment. I mean I will be aware of what to look for and I am, I mean I do keep an eye on him in that area.

Does he have to be accompanied to the loo?

Yes I do accompany him because his personal hygiene is not sort of terribly good and I do actually wipe his bottom for him but when hes at the centre they’re always short staffed so he copes on his own quite well. He has an occasional accident if hes out and can’t get to a toilet, and somebody doesn’t understood him because his speech is very poor.

How old is he now?

But he does need help. Hes 30.

30?

Hes 30 mm, hes physically very healthy but hes mentally quite disabled and so he does need quite a lot of help.

He can’t read or write, I mean he can’t recognise his name. He can recognise logos of his sports club but he needs a lot of personal help but he copes on his own quite well. So well cross that bridge when we come to it. I can’t see any point in worrying in advance.