So we went and had the scan, waited for that and then in October we went back to see the neurologist, the consultant and he said that there was signs of damage both in her eye and the optic nerve and in her spine. And in all likelihood that shed had an MS type attack. But because shed not had another one since then they didn’t want to do any interventions and they didn’t want to do this, they didn’t want to do the other on that and they mentioned that the first visit with the consultant when he told us about the diagnosis that the only definitive test was a lumbar puncture and that just freaked my daughter out even more. She was very young and not a very nice procedure.

Shes had full body MRI scans, MRI scan in the beginning for her optic neuritis and she has, she had a scan actually about four months ago and the consultant used the language, was well theres no more because it’s your myelin sheath isn’t it, it’s an attack on your nerves and he said we can see one that was about 10 cm long it’s now gone away so it’s healing up therell be scar tissue there. We can see the one still in your eye but they couldn’t see any, anywhere else so and the, he said to her, you know, in all likelihood you have intermittent relapsing MS but, he said, and that’s what we see from your scans but the definitive test is having a lumbar puncture and he said if you have another episode that’s very serious, he said it might control itself but, he said, to get any of the new drugs that are being trialled you have to have a definitive diagnosis.

So then, we then said well what will these drugs do because shes not having these horrendous episodes, shes having very, I hate to say it but more minor ones compared to what other people have so would you give her any drugs anyway and the consultant said, No we wouldn’t and he said, and we wouldn’t even like to give her drugs for chronic fatigue unless she wasn’t managing it. He said, What our aim is with her is to keep her here with no medical interventions as long as we can and he said to her, when we saw him last about two or three months, in terms of one to ten he said, You’re a ten, you know, and that’s how we want to keep you.

So we haven’t, we haven’t sort a definitive definition, I think were all quite clear that that’s what it is and that she could have a relapse at any time but a lumbar punctures not going to do anything for us. If I felt that there was some drugs out there or some treatment that she could benefit from then I would be back and we would think about it but shes vehemently against having a lumbar puncture for the sake of it. So that’s, I think that’s where we are with that.

The day we got the diagnosis, the day we saw the consultant and he said to us that’s what it was likely to be, it was horrendous, it was really, really hard. Because you have to keep really strong, you know, for my daughter I thought well, you know I need to be the strong one here and get her through it and let her know that it’s not the end of the world and everything like that.

It was a bolt out of the blue.

You know, that was the very phrase I just had in my mind that other people have used exactly that phrase because I was going to ask you what is that like?

Yes, yes.

Suddenly, everything changes.

It’s, it did, everything absolutely did change because probably typical parent her older brother was at University, you know, so academically very flying through. I always knew that my daughter didn’t want the same type of progression that her brother had had but, you know, I thought that she, you know, A Levels and then go to higher education and then, you know; sort of have as many options that she could open to her. But all of a sudden this illness made us reassess actually what life was all about and, you know the main, my main priority then that she was healthy and happy and if academic routes and things like that weren’t going to help her feel well and feel good about herself then I totally shifted it and mentioned doing things like, you know, are you revising, do you need any help, do you need to do this, to all of a sudden saying Look, [name] do it if you want it. You can come back and do it next year, you can come back to this, you know, just let’s get you through this next period. So, yes, it fundamentally I think made me reassess what I needed to do to support her for her to be happy and fulfilled in what she did and that was to find a job and to be an adult. Shes got quite an old head on her shoulders and she wanted to work, she wanted to earn money, she wanted to contribute in that way and that’s what shes doing.

So when we got, the day we got the actual diagnosis, we had a feeling that it was going to be that but we weren’t sort of saying it to one another and we decided not to tell a lot of the other family members until we actually knew what was going on. I told her brother, her older brother, but couldn’t tell her grandma because we didn’t want to upset her before we knew what it was.

You mentioned that at the beginning you didn’t want to tell people until things were confirmed. Could you talk a bit about the process of disclosure after that?

Well, [name] and I, my daughter and I talked about who, who we might want to tell and who we wouldn’t. She took the decision of which friends, shed finished college by then, a lot of friends had gone off to Uni and different things so she decided who she was going to tell. We talked about whether or not to tell Gran and Grandma and for different reasons we didn’t tell either of them. We talked about whether to tell cousins and very close friends and acquaintances with that.

She had a think about it and then she decided, and it was almost like a sequence, so like first of all we told the very, very close aunts and uncles and cousins that live locally and then we sort of said well actually it doesn’t really matter but remember Gran doesn’t know about it because we don’t want to upset Gran, theres no need to really tell, to tell Gran, shes in her late 80’s, about that because she really will worry and think the worst. And we said that if [name] started having any symptoms or reactions that were more severe and that were affecting her day to day the way she can live then yes we would tell Grandmas because it would be apparent that there was something wrong, optic neuritis just weren’t and they’d accept that shed just had a virus or something so, so that’s what we did, we did with that there.

As a parent I sort of stop and think about the future and sort of you know, you obviously think, especially with what’s happened to me, am I still going to be here and if she does need more support in another 20 years how’s she going to get that wheres she going to get it, but then you’ve got your family and friends back up for that. So no I do think were taking it chunk by chunk sort of year by year in our approach to it. Keeping a really close eye on her and how shes doing and how shes managing work.

Weve talked about if her fatigue does get really bad then we might talk about is she going to go on and say to work actually, you know, I have got this illness and I want to drop my hours down, I want to manage my fatigue by cutting my hours down and how would that work, everything like that. I mean people are doing that anyway for other different reasons in their life, to get a better balance so I think we still see that as work life balance in general and that’s how we sort of, that’s how we look forward to that. And who knows what the future is going to bring, you know, having a family’s not guaranteed for anybody is it, so life continually throws up these things and you then have to decide how you’re going to tackle that, manage it, cope with it and get on with it.

Shes obviously very, very nervous about the future in terms of shes a very family orientated young woman shes getting married in June, which were all thrilled about, and I’m pretty certain that shell want to start a family if they can and shes worried about how her MS might impact on that. And when we have talked a little bit about that with the MS nurse I think it’s been a little bit about, Oh, let’s not worry about that yet. But actually it’s really important to [name] to know what might happen and, you know, should she delay putting a family or should she have a family when shes fairly young. So I think that, once we get over the wedding, I think that might be something that she and her fiancé might talk to the MS nurse about and just sort of get some opinions on that.

I’ve coped with it I think in terms of mums cope with everything for their children in that you want to be there for them, you want to be strong it’s been quite hard sometimes to watch [name] go through things that I would have rather I had to go through then shed gone through. But the twist in this tale is that her diagnosis was in October and that was, so we were all focussed around her, and then in the following February/March I got diagnosed with breast cancer, which then was like being put on a speed train, you know, four weeks later I was in having surgery then radiotherapy then chemotherapy, you name it you get it.

And so, of course, that was devastating to have to tell [name] my daughter and my son because I wanted to protect them both. He was doing his final, his masters, she had this diagnosis so that, that was very, very hard but theres no way you can’t do it. But then what happened was, was she became the parent, she totally stepped in and wanted to come with me for treatment and made sure I was okay, carried on working and then was being my support at night. And so we have a very, very changed relationship because I suppose I’d always been the one that was the nurturer, the carer and then all of a sudden she was looking after me, worrying about me and saying well what’s the doctor told you today, are you okay and why are you doing that? And so, and she has said in retrospect that it did take her mind off her but it did make her worry even more about what would happen if I wasn’t here because obviously people talk about cancer and immediately think doom and gloom whereas if you’re going to get any cancer, get breast cancer because it’s highly funded, all the research and the treatment you get is, well the treatment I got was absolutely top class.

So, in terms of that it was a huge thing to have to tell a young, you know, a young girl that her mum’s suddenly got breast cancer. But weve both got through it, we had a horrendous year but we came through that year, went on holiday, she got engaged, shes moved out, shes living independently, I’m through my treatment, everything’s fine and so weve got an awful lot to look forward to and I think really that’s about, that’s how weve got through it, helping one another.

At the local hospital when we were focusing on her eye we weren’t particularly happy so I asked that all the appointments were moved to the specialist local hospital and since weve gone there [name]’s been much happier, my daughter’s been much happier and I’ve been much happier with the consultants that when weve seen them and they have a specialism around MS. the last consultant we saw was just great, the way he spoke to her and interacted with her was just so good and he made her feel that she wasn’t wasting his time because she, she, you know, she won’t be the most severe patient that they see, but he really, really helped her to see that, you know, you keep it here and you’re doing really well and that’s what I want to see I don’t want to see you coming back here because you’ve had another episode I just want you to come back and say how are you doing, how’s things been. And for a consultant to sort of talk to a 22 year old like that really made her feel an equal whereas maybe one or two of the other consultants had almost been treating her as a child that didn’t go down very well because then she starts acting like a child.

We also had to look at the issues of her telling people at work and in the work situation and you, you would like to think that anybody who is interviewing a young person would not take the fact that a young person has potentially a very serious disease that may progressively get worse as a negative when they’re at an interview when they’re going for a job but, you know, I’m a manager I’m out there in a very, very highly competitive world and you can’t say that everybody will do that. So we had a big debate about was she going to declare her MS on her form, shes not had a formal diagnosis because that’s the lumber puncture, weve been told it looked very, very like she had that but there was no way of knowing how it would progress. It seemed that her only symptom at the time was chronic fatigue apart from the odd bits and pieces she was getting and that.

So we took the decision when she was applying for paid jobs that we weren’t going to declare on the form and I don’t know if that’s right or wrong but that’s the decision we took. Shes been in she had a part time temporary job and then shes moved into a full time permanent job in as much to say they are permanent now and she hasn’t said anything because they’re going through a review and she feels that my disadvantage of in a review when they’re cutting down the number of administrations to support people so shes still not going to say anything because it’s self declared whether or not you feel you’re disabled or anything, it’s not affecting her doing her job so we feel in that way a bit comfortable about not doing it and it will be her choice when she tells her supervisor and her work colleagues. They are asking her, they are saying a couple of times you look so tired [name] are you okay and shes battens it off. So that’s where we are with that.