It is not something that they have probably really been to taught to deal with, at least on an emotional level or just to understand how important and how difficult it is for someone going through this, instead of just being told oh go and do this, go and do that, you know, go away, it has not been long enough, you know. To sort of understand what it actually means to someone what you are saying that would be nice.

What do you think, you said a bit about the nurses and the doctors before, what’s your general opinion of the health professionals that looked after you?

They’ve been outstanding. I have been really, really fortunate with the health professionals that I’ve had. And actually, as I come across yet another excellent chemotherapy nurse you have to assume that this is the standard. You know, I can’t just be lucky with every single NHS employee I come across. The nurses, do you know, one of the things that makes chemotherapy nurses, I think, seem really, really good is, I don’t know whether they have a skill of remembering detail about people or whether they’re just very careful to look at peoples files very closely before they see them but, you know, they knew my daughter’s name, and when I went back they would ask after her. And they see thousands of people so theres absolutely no reason why they should remember her name, but they do. And it’s that kind of personal treatment that makes a big difference. When you feel like somebody has personal investment in you that’s a very important thing. And I think that the nursing staff, to a man and woman were as, were that good. And you do feel like you’re being, you know, that they’re willing you to get better, they’re willing this to be successful. And it’s true of the admin staff as well, although I think sometimes clinic arrangements could perhaps be administratively enhanced. But that’s just the way it is.

It was a him. And I have to say he is really great. He is one of our, you know, favourite doctors. But through that, I was kind of surprised actually that he was as offhanded as he was about it. Because he was another one, who just said, Oh well. You have already got a child You know, It is obviously just going to happen. It is just taking a bit more time. Ra ra ra And he also, you know, he did say, somewhat apologetically you know, Oh well it is two years before we will do anything anyway AndI guess he probably, I can’t remember if it was that first visit as well or whether I went back again. That was when he said, Well we can do some sort of ovulation tests to make sure, you know, but that is allrdquo; You know, but it was very much like, oh kind of, Why are you here You know, You already have a child so obviously you can. You are taking up our time with this You know, kind of thing.

Which must have felt awful?

Yes, especially when you go in there thinking okay I have waited my year. Finally they are going to do something. And then you are told, no go back and do it and for another year.

I don’t know whether anybody, I don’t know whether it is because GP’s probably aren’t exposed to it very much or whatever, but having said that when we were sent to the OBGYN, what you call it, the gynaecologist who is connected with our practice for those tests. I mean he was exactly the same, and so I mean I would like to write it off and say the GP’s just don’t have the experience, but then he probably does and he said the same thing. The kind of why are you here, you have already got one, you know, there shouldn’t be a problem, kind of thing. And I think that I was just, you know, sort of shocked that they could overlook how completely destructive this was, you know, for all of us in the family and to an extent, you know, beyond it as well.

But I was lucky because at that clinic appointment they then said ‘Would you like to be referred to the pain management team’ and I said ‘Yes please. The first time I went to the pain management clinic, they were asking me about my pain, how it affects you, what it’s like and you tell them and these people they sit there and they actually a) they listen to you, but b) they don’t question you.

When you go to, when I was going to the specialist before my surgery, everything is questioned. You know, ‘First of all you said your pain was like this, and now you’re saying it’s like this’ and ‘What do you mean?’ and you almost feel that they’re trying to tell you, ‘You don’t really have pain and you don’t know what you’re talking about.

But as I say, you go to a pain management clinic and it’s like ‘Okay you are telling the truth and we believe you’ and it makes a huge difference actually, having somebody who will believe you, without questioning it. Because you go through, you go through virtually everybody questioning you and wondering if you’re telling the truth or not.

I managed finally to get an appointment with our lady doctor. About my age and she has recently retired but she was always very good, very very supportive in anything. So I went along and she never hurried any of the patients, so there was always a long queue for her. And I remember being with her for about an hour and she had the box of tissues ready and I just wept and sobbed and told her all about it and she was marvellous, she just sat back and listened. And this is when she felt that we needed to consider something like HRT, to see whether that would help.

What did you talk about in the consultation? If you can remember back?

Well I was trying to explain how these moods seemed to be taking over and how I felt that this wasn’t right and I think perhaps by then I might have thought well is this to do with the hormones, or is there something else that’s going on. But she was more or less able to reassure me straight away that it sounds like hormonal she said, then like you she said tell me about i and I would tell her that, how I felt about things that were going on and my reaction if somebody said the wrong thing, put something in the wrong place. Very sad really isn’t it but I think having someone to talk to and who gave me all the time that I needed to just to get it off my chest was one of the best things possible. So that really helped. That it was recognised.

And then when I think we went back a third time and went all through the casualty, admissions again that there were a set of doctors who were still not prepared to do very much. Then one doctor came along, and I will thank him for the rest of my life, and insisted that three times was too much. And actually he was the one who pushed further in to the problem.

And I read about, I did, because my mum has a friend whose son has Asperger’s Syndrome and he was diagnosed as a child. So I was aware of this syndrome being related to autism, I had heard of it. But I wasn’t really, I didn’t really know much about it. So I did, again I typed it into Google and looked on the internet because I just wanted to find out what, more about what it was. And I read about it and I was like yeah, that’s kind of what I have. Because it’s like I’ve never been able to make friends, socialise properly, with people my own age group. Always been very, very it was mainly the obsessional interest that really stood out, like you know, Kate Winslett was just so extreme. Just not like a normal interest. It was just like 100%. So yes, I immediately thought, yes, that’s what I’ve got. So I went and told my mum and she said, Yes, we’ve always known you’ve had that. You know we’ve always known that. And I said, Well why didn’t you get me diagnosed? And we had this like discussion about how she didn’t want worrying about future life chances, and how she was waiting for the school to do something, and the school never did beyond giving me that statement.

So, so, yes, and then we had to try and get a diagnosis, which was not easy. We got it on the NHS. We did at one point consider going private because you know, you do have to wait such a long time, but it’s very, very expensive to do it private and also you know, we wanted it to be done properly. It’s more official if it’s done on the NHS, than if it’s done privately, because not all private diagnoses are accepted, so we wanted to do it the proper way.

So but it was a very, very long process. It last like, you know, about a year. First of all we had to convince the psychiatrist to actually refer, refer me. So I saw a psychiatrist, a consultant psychiatrist and she actually, she actually said, you know, she didn’t think I did have it because I was interacting so well. And I remember getting home and so, so annoyed. You know, I was like really, really upset, because I knew that, I know that I can. And I think this is a problem with something like quite subtle with something like Asperger’s. I think particularly if you’re female in many ways, because people expect you to be social and maybe you do. You’ve learnt perhaps social conditioning or something, to be more social or something. So I think sometimes there are many like different manifestations. And I think some psychiatrists still don’t expect girls to have it, so may be that, and also I can, on a one to one basis, particularly with someone whose older than me, I, sort of in a professional situation I think I can come across as not different to anyone, without Asperger’s which is not that obvious.

So I know that, and I think that’s the hardest thing; people don’t understand what it’s like inside. Or, your day to day life’s not being able to make friends properly. You know, I was thinking to myself, okay if I didn’t have it why, why can’t I make friends then, or why can’t I socialise? Why have I got all these problems? And I knew I had it. It’s just I, you know, I thought well I’ve either got that or I’ve got a personality disorder. So I came back, and I was really, really, really upset, because I was kind of in turmoil thinking well what do I have then? So that psychiatrist really wasn’t good.

But yes, then so we got a second opinion and the other psychiatrist was way more sympathetic. He was a younger psychiatrist, than the other one, I think the other one was you know, just quite an old psychiatrist. She was about t