Lymphoma

But I have carried on working all the way through. I'm incredibly lucky with my work that it's flexible, it's more vocational than just a job. And there are lots of times when I'll be working through weekends or late evening, and then if I want a day off, like today, or yesterday when I had the treatment, that's not a problem. They're also, the ones who know, they've been very supportive and very understanding. And I haven't really felt any need to take time off work. I think I have been relatively lucky. I do get quite a bit of nausea, not very bad most of the time. I know the next two days will probably be quite bad, but most of the time it's just sort of a low level thing, which also I think is because the Mantle Cell Lymphoma often, and chemotherapy generally often, in general, often affect the bowels and all the gastro stuff. 

But on the whole I've not been too bad so I've been able to carry on working. I've still got my hair, which is why I haven't had to tell anyone, although they've been trying to persuade me to have a wig fitting, so I think they're reckoning it will go. It definitely would with a bone marrow transplant but in this weather I'm not too fussed about that.
 

Well I was 21 when I first picked up any kind of symptoms I guess so I'd just finished university a few months before and had recently moved to London and had just started working and moved in with old university friends. And everything was kind of progressing pretty well, I think it was the year of 2000 actually, yeah it must have been 2000. So yeah, I was 21 and working in London, living in London for a public relations consultancy at the time. And everything had only really just got started after university, it was kind of like the first job and everything was progressing from there and didn't really have any sort of grand ambitions but everything was just sort of starting to take its place and everything. 

And I guess at that time I was quite lucky because, because I'd given up work I could just rest, relax at home, concentrate on doing what I was doing. I mean, before I had given up work I wasn't particularly happy in the job I was doing anyway so it gave me a really, really good opportunity to reflect on what I was doing, what I wanted to do and perhaps how I was going to go about it. So I remember just kind of using that time to my advantage and looking at different kind of options as to, yeah I was always looking to the future as to when I was going to get better, what am I going to do then, rather than kind of thinking, 'Oh OK, we'll just deal with this now and then just stay on this subject'. I was always kind of looking to what I was going to do afterwards and that, I think that really helped. It gave you kind of something to aim for, and something to also occupy your mind as well and occupy my days because I think I would have probably gone a little bit stir crazy just kind of cooped up inside the house every day. But I was able to go out and do these kind of things and at the time I was kind of thinking of being a teacher so I went out and did experience in a school and was really lucky that I was just able to go and do these kind of things, which most kind of working people aren't able to do because obviously they've just got to earn the money. Now I physically wouldn't be able to do that and take a day off work every day, every week and kind of get experience in new things, go, 'I'm just going to go off and try that for a day, a week, and see how, see what it's like'. So that kind of six months gave me a really, really good opportunity to kind of work out what it was I was doing and where I wanted to go from there basically.

So you felt well enough to be able to do this?

Yeah yeah, physically I felt fine. I was kind of going out with friends still. Wasn't really kind of staying out perhaps as late and doing actively as much but I could still get to the pub and watch my football and do all the sort of normal things that I'd done before, the kind of social activities that I'd done before. I'd just kind of have to take it a bit easier the next day perhaps, but even then I could still kind of, I was very active but I was, perhaps wasn't doing as much sport or anything like that. I had tried to kind of do very gentle exercise like swimming. I think I had also joined a gym and that wasn't quite so good, I didn't feel strong enough to do that kind of level of activities in that I was pushing myself too hard at that point.
 

How long were you unable to work?

Well I think I was very fortunate really in that I was used to working, my job as a freelancer I was used to working from home, and it wasn't seriously affected except, what I did was just tone down my ambitions. And I think I would say my ambitions initially were 10 or 20% of what I was doing before, and then within about three or four months I'd probably got them to 50 or 60% and then slowly over a year or two probably got back. One of the good things about recovery was that I could work much harder and one of the bad things about recovery was that I could work much harder. So I was fortunate and all my friends who were doing similar work were telling me that sitting in a wheelchair and staring out of the window was not that much different from what they were doing part of the time as well. So it wasn't, I mean I think I was very fortunate because a lot of people would've lost their careers and jobs completely in that situation.

You said you were doing a part time job in Wales before?

That's right I was on a, I think about a 9 month contract and I missed the last 4 months I think of that and never got back. I mean I did go back 15 / 18 months later with a stick, actually it was probably more than that, and with 2 sticks, and said goodbye to people but I never got a chance to say goodbye to the house that I was living in. My housemate stayed on and then cleared it up and put my stuff in store, which again was wonderful, marvellous practical help to have. And yeah I mean I had to deal with that and that took me a little while longer. I mean I have a particular way of saying goodbye to places I think that I, and when that's cut off that made a difference, I think it took me a while to deal with that. And of course it raises a lot of interesting issues for not seeing your own stuff for quite a time as well, and what's important and what's not important, and what you really need and what you don't need. So I think that was quite interesting, yes.

So were you working freelance as well as doing that part time job before all this happened?

Yes.

So did it have a big financial impact on you?

I mean one of the peculiar things about being a writer is that you can earn money when you're not doing any work. And the two years that I was ill I actually earned more money in those two years than I had in most other years, just because I had things that were doing well. And of course the ultimate extension of that is sometimes writers who are dead can earn far more money, that's just part of the way the business works. I mean that Shakespeare must be really bringing in money these days. 

But so in fact I was very fortunate in that sense, and I think, but that doesn't stop me from thinking often about how it would have affected other people in that situation. And I think being able to get into work, because certainly had a place not been wheelchair-friendly you wouldn't have been able to have got to the workplace probably for 15 months or so, I would think, and that would have been the job gone probably by then. I did go to some places, I used to go to libraries to work, I worked out ways of getting in and out of specific places, not all, but that was a big help. And what I found was that I didn't need a choice of several things like several shops or several caf's or several this or several that, if I could find one that I could get to that was good enough for me. So I had my one cafe sort of within 7 or 8 minutes walk or 20 minute wheel or whatever. And that's the place that I would go to because I knew I could get into it, and I had a safety zone that I worked with I think through that period.

Do you want to tell me a bit about the impact this illness has had on your career and how your employer has behaved towards you?

OK. I think the disease itself wouldn't have stopped me, even with all the treatment, wouldn't have stopped me being a lawyer, accountant, possibly even a doctor I suppose, because in between treatments and when I felt better I could have gone back to work. Being a pilot' completely different ball game. As soon as I was diagnosed, 'That's it, forget it, you're not flying any more'. And they said, when I was in the military they said ,'Well that's it, end of your flying career'.

They had a case in the Navy where the chap actually had died walking out to an aircraft, he'd collapsed and then subsequently died and he was diagnosed with having Lymphoma. So they had a precedent there saying, 'Right, if anybody with Lymphoma, that's it, the end of the flying career', sort of thing. 

But I then subsequently did some research, I found a paper, I can't remember where it was now but I found some, it was actually an aviation journal, a medical journal, and it said that if successfully treated and at early stages then pilots could return to flying. I think subsequent papers that exist now with the Civil Aviation Authority say as long as various protocols and treatments are done then you can return to flying if you're successfully treated. It takes some time and that's why it's taken such a long time now for me, I've had a good old three and a half, nearly four years of treatment, and then two years subsequently I'm now back in the seat of an aircraft flying again, but I had to cross some huge hurdles. And professionally because of that big, you know, over half a decade I've lost in flying, that's been, if you're working for any company and you lost six years you'd probably, you've certainly lost a promotion prospect, you've certainly lost touch with what the new techniques are, the new things are, and so getting back into it has been a struggle. 

But the company has been fantastic, absolutely fantastic, it wouldn't have happened anywhere else. They said, basically, 'Get yourself fit and you've got a job', and that really helped my recovery actually. One of the things in my mind was the financial aspects of it all was that, 'I can't fly, I'm not being paid, crikey, what do I do? You know, what do I do? Do I retrain, do I do whatever?' And so er it was, I mean a huge problem first off. 
 

What was your employer like?

Again, in both cases fantastically helpful, wanting to do everything they could to support me. I pushed myself too hard and tried to go into work when I shouldn't have done on this occasion. And they very quickly made sure that I was at home and safe rather than trying to push myself at work. And on both occasions I found it really hard to give up jobs that I was really engaged in and enjoyed and felt really strongly about wanting to carry on doing. And in both cases they bought in people to cover my work as though I was on maternity leave, and maintained communication with me and in both cases were really supportive and helpful. I've been incredibly lucky.

But then again in both companies they tried to fix it so that holidays were kind of tacked on to the end of sick leave or so that I wasn't officially sick until later on if I possibly could be, and stuff like that, and have paid me for holiday that I haven't taken, and all those kind of things. So they've been really flexible and helpful. And my manager has kept me up-to-date, as have my team, with what's being going on. And I've felt really supported by work, as well as at home. 

And I mean I think there are times when I've felt really anxious about going back to work because it's very difficult to go back. And I do feel quite detached from it because with the best will in the world I am, you know, even though they're updating me, it's not the same as being there and doing the stuff. So it is nerve racking to go back to work. But again they're really being helpful with finding ways for me to cut down my commuting time and maybe spend some time working from home, and all those kind of things, and to ease me back into the job. So I do feel very well supported.
 

After I'd had the chemotherapy I would take some time off work, and I was taking three to four days off work after the chemotherapy and then I was, to try and keep some sort of normality in my life, I'd start to go back to work. 

Initially where I was working had been very good and they said that I could virtually come and go as I pleased. They gave me an allowance of sick pay and said whether I took the days all at once, or if I took a few days here and there, I had this allowance. So that was very good and very helpful so we were comfortable with the knowledge that money wouldn't be an issue and we could just get on and do the best we could. 

But as I say for normality I was trying to get to work as much as I could, just it made, it helped me not to think about things, not to dwell on things too much, and daytime television is awful, it depresses you more. This carried on for, we went through the six cycles. 

Also during this time my work had started to become really very difficult about the time off, and they then decided that they weren't going to be paying me any time off sick although I hadn't used up the allocation that I initially had been promised. And they also had me clocking in so if I was late they could dock me time and whatever, so it became quite unpleasant. Fortunately for me, a place that I'd been working at previously had asked me to go back, and they knew all about my illness and they were quite prepared to take me on in spite of my condition. And it was shorter hours and nearer to home so I took it on with the view that once I'd recovered it would also be good for me to be in a less stressful environment. So I actually changed my job whilst going through chemotherapy. But, as I say, they were very good and it's been a lot easier and I'm sure it's helping with my recovery in that I'm in a much more stress-free environment. 

Did you lose out financially?

No not, they agreed an allowance of pay and then went back on that agreement and I argued the case quite strongly. But that to me was, 'Right OK, I'm off'. There were also other things happened, my immediate manager got sacked during the period, whilst I was having the chemo, and I was acting manager but they then gave it to somebody else. And we don't know if it's because I was ill, what the reasons were, but it was all a bit questionable. And they were putting upon me a lot more because I was the one that had the ability to do the job and the chap who wound up taking it didn't have the knowledge so I wound up doing a lot of the roles but without actually getting the credit and everything. And so various things conspired to make me leave and I got out as quickly as I could but stepped straight back into another job. And it's back at a company that I'd worked for for ten years so it was quite easy for me to step back into it, I knew the job well, so that was very good. But I was extremely lucky in being in the position that I could do that, it could've been really quite unpleasant.
 

Because I'd given up work and everything there was a sort of worry in my head that people kind of judge you for, as soon as you're looking for work after coming back from an illness they'll kind of look at the illness and kind of think, oh bit of a risk. And in my experience I haven't really found that at all and I'd say that's quite a positive thing I think. Although perhaps some places will still, maybe will still look at you and think oh, I think you can turn it into a positive experience and turn it on its head and use it as a life experience, put it on your CV and just kind of don't be ashamed of it. Just kind of explain the details, because I think people only put you down as a risk when they don't know what they're dealing with. So as long as you're kind of aware of the issues and can explain them to potential employers and don't really worry about it, it's fine, you can get back to work. And I mean since starting work again I've felt fine and things have progressed and I'm just treated normally by anybody and everybody around me and it's just a, it's a good environment to be in. And it is quite, you know, can be quite worrying when you're going through kind of treatment and what are you going to do next. But just kind of take that time to think about it and once you get to that stage, just approach it differently and kind of say, just be very up front I would say. If people have a problem with it then it's their problem not yours really.
 

We've made a lot of lifestyle changes, I did go back to work as a health visitor after my treatment, but after six months I was finding I was struggling to do the work, I was tired, it's quite a stressful job, I was working on my own and I went to, I was referred to occupational health. And they said, 'Why are you doing this, why are you working in a stressful situation with children', who are obviously great bug carriers, 'In a GP's surgery where people with all sorts of infections turn up, with a compromised immune system? It's crazy that you should be doing this with a prognosis where you, with the best will, you've been told you've maybe got three to five years. We think that', the nurse said, 'I think you should be considering retiring on grounds of ill health. I will put a case that I think that that is the situation, I strongly recommend that you retire and I suggest you clear your desk on Monday'. 

So that was another brick wall that I hit because I was working, and although I was struggling and finding it hard work, it hadn't really occurred to me to stop working. And a lot of people say, 'Well that's outrageous, she shouldn't have just done that'. But I'm the sort of person that I need somebody to give me permission I think, I'm not very good at saying, 'I'm sorry, I really have had enough of this, I'm walking'. I don't do that, I'm too reliable. So I suppose in a way actually being given permission to do that was what I needed. I came home, I told my husband and he said, 'Right if you're retiring I'm retiring too'. I said, 'No you can't do that'. And he said, 'I can,' he said, 'it's something that'' and to be fair it was something we had even talked about, even before I'd been diagnosed with my illness. He'd said, 'I'd like to retire in my early 50s.' I said, 'No, no, no, no, no, you at 55, I'll retire at 50, that's quite reasonable'. Anyway I was retired at 46, he said ,'I'm going'. So at, I was 46, he was 50 and we both retired. I left in the, I think probably about the May, and he retired in, or the June, and he retired in the July. 

We spent the next three months planning a tour round the world and we spent 3' months doing a world tour, which shocked and surprised everyone, not least of all his daughters, because we're not impulsive people, but it was something that we chose to do and it was a wonderful way to celebrate retiring and the start of a new era in our lives. And we came back from there and we have continued to remain retired. I sit on a professional body as a patient representative for haematology, working with consultants and professionals looking at where haematology practice is going in the way of research and funding and all the other, you know, and best practice. I also applied for and was accepted as a magistrate so I do that about a day a fortnight on average, which keeps the grey cells going and gets me out of the house. 

My husband runs his business interests from home. We have our two dogs, we walk the dogs, we enjoy life, we're busy, but I now take time to do what I call 'sniff the air'. And on a beautiful day like today you stop and you think, 'Hey God, isn't it good to be alive?' And that's actually I think the difference is that now we take life as it comes, we enjoy life for what it is, which is something that so many people just don't do. And if you ask me, having had cancer twice, am I unlucky? I would say no, I've been incredibly lucky because it's made us realise how important life is, and we enjoy it. 
 

So did you end up missing the best part of a year of university?

Yes.

So you went back and started all over again the next year?

Yeah and I repeated a year, I repeated the year then.

Yes it must have been quite tough, I mean you talked about having a different set of peers?

Yes

Quite a bit younger?

It was hard, it was really hard actually. I didn't necessarily have to drop out but it was the right thing to do that I did. It was, I remember it was hard to get back into working and writing essays, I hadn't, I mean that felt so long ago. And I was doing philosophy and politics and I remember the first essay, or one of, maybe the second essay, I got', you know, about the problem of evil and the philosophy of religion, and I got myself in a complete state because I tried, I couldn't organise my thoughts very well and therefore I couldn't write an essay very well. So I think both academically I struggled in terms of being on top of it. But socially I think it was quite hard too because I mean I was quite social and stuff but I tried. I also felt really distant from everyone and ended up actually spending a lot of time with some of the more mature students because it's just really, at a different, a lot of the people around me I just thought were so young really. And rightly so, but I didn't feel like that. I mean I did do all the things that students do, I went out and got drunk and I did all that sort of stuff and I didn't, I wanted to in some ways, but no, the first year and the second year were quite hard. 

And when I got my degree I was so, and my mum and my dad both came to the graduation, which isn't really very usual but, well for my mum and dad, for me. But we were, they were so proud of me and I was so proud of myself for getting through it, I think just having gone through all the stuff and done it in three years in the end, because I think there were times I was struggling quite hard. And I got a 2'1 as well, I don't know how I managed that, but in terms of, not because I don't think I was capable of it but just in terms of working. So in all it was, although what then I did at university, I spent a lot of time at university in doing other groups. I was, to me that was actually as much, you know, I did my degree but I was also on like the women's committee and the union council and anti-racist committee so that filled up my time I think, and did a youth club for refugee kids and stuff, so that was kind of to me, I was, by helping other people, getting involved in those sort of things that helped me I think, or maybe that's just what I do. But I think one thing I would say is that it is very hard to try and find an even keel again.
 

I've always had a lot to do with children, all of my grandchildren I've been involved with a lot, but I've lost it in these last twelve months and I feel they haven't been able to come and see me as much because maybe colds or coughs or things, and I haven't been able to look after them as I have been, you know, they can't stay the night here because I couldn't cope with them, which I've missed and I feel it's a year out of their life as well as mine. We've always been quite close as a family and I've lost a lot, I just feel as if I've lost out on a lot of things in a way, and yet I've had a lot of other things happen. 

You just feel I like to do, I like to garden and I think, 'Well I missed it all last year, where has it all gone?' And you come back to thinking about jobs in your house and there are obviously yearly, monthly jobs that you do in the house, and I suddenly remember that, 'Oh I wasn't capable last year it must be in a dreadful state'. You know, that sort of thing. Just the fact that I think that I've lost a year of my life. 

And also my mother, well she was 100 this last month, she's always been in her own home, bungalow in [city] and I used to, my son, my husband and I used to go down every week and I'd do the housework and he'd do the garden and my sister would go down another day and do the shopping and deal with her pension and everything. And that was on a regular basis, and then she suddenly, I got this last year and of course I couldn't go, and for weeks and weeks I hadn't seen her, which to her as well as me was tragic really. Because again we're very close. And then sort of September time she got poorly and had to go into hospital and she wasn't treated well at all in this sort of so-called cottage hospital, and I was being treated like a queen, and I couldn't understand this and an elderly lady of 99, how, why weren't they? And of course I could only converse with my sister who was the one that was going to see her, I couldn't go and see her because of my own immunity I couldn't go into the hospital. So I went a few, a lot of weeks without seeing her. 

And then she came home and I was at a stage where my immunity system wasn't too bad so I managed to get down to see her at home. But she was, for the first time in my life I'd seen her in bed, she was, even at 99 she's always been a very fit person, and she looked very poorly. She was so overwhelmed at seeing me, that what did she say to me? She said, 'Oh it's my daughter, my daughter,' she said, 'My daughter has come to see me. I've known you since you were a baby', which was quite touching really at the time. And then she went back into another hospital and again she wasn't treated the same as she should have been as an elderly lady. But of course she was in a medical ward, which of course they're not going to keep her in because they needed the bed, but she wasn't capable of going home, she wanted 24-hour care, so between us we had to find a private nursing home for her, which she went in and she's in now, she's been in about five months now. 

And she really went quite downhill really, we thought, 'Have we done the right thing? But what can we do? We can't, there's no one can look after her at home so'' And this of course, this all projected back to me over the year, 'Why have I lost that year of my mother's centenary year? I should be there looking after her now', and I couldn't do this. Mentally this really has had a big thing on me. But she's settled now, she's beginning to realise, and when I was able to go down I went to see her in the hospital, in the nursing home once, not long after she'd gone in, and I've seen her a couple, two or three times since. 

We managed to get to the stage where her birthday was coming up and I was trying to communicate with my doctor and her to make sure that I was around and able to be fit enough to go down for her birthday. So we did that, I did actually get down on her birthday, and then on the following Saturday we managed to have a surprise birthday party for her at the home where the whole of the family were there, thirty-four of us turned up at the nursing home on the Saturday. So I feel that at least I managed to get to that stage and she managed to get to that stage as well. So I mean how much longer it will go on for with her I don’t know but fortunately now you can relax, I can relax because I know she’s being looked after all the time as opposed to us having to run down to see her if necessary. So at least that’s come to a settled part of my outlook on it all.