Gilly - Interview 42

Brief Outline: Gilly was diagnosed with acute myeloid leukaemia 18 months ago after having a variety of symptoms. She nearly died but 4 courses of chemotherapy put her into remission. The leukaemia recurred after 5 months and was treated with a bone marrow transplant.

Background: Gilly is a therapist and yoga teacher. She has no children. Ethnic background: Irish/American / Turkish/English.

More about me...

After having a virus infection Gilly noticed a bruise on her leg then a swelling and blisters on her arm. She felt exhausted as if walking through treacle. She made an appointment to see her acupuncturist and herbalist the next day and phoned her GP for a home visit, by which time she felt disorientated, had palpitations and was going in and out of consciousness. The receptionist said they couldn’t send a doctor until the next day.

Gilly went by taxi to the acupuncturist, who took one look at her and sent her to hospital. Gilly described her symptoms, which now included photophobia so that she was covering her eyes with her scarf, and was immediately admitted and diagnosed with acute septicaemia, pneumonia and cellulitis. Later she was told she had acute myeloid leukaemia. She was given chemotherapy but within three days all her organs failed and she felt an overwhelming desire to sleep. She was moved into intensive care and told there was nothing more they could do for her.
 

Gilly spent 3 or 4 weeks in intensive care during which time she felt totally supported by the professionals and by her friends, and did not fear dying. She came back from the brink of death, was very weak and had to learn to walk again. She resumed her treatment with four courses of chemotherapy, each requiring a month’s stay in hospital. She complemented her chemotherapy with holistic treatments, such as reiki and massage, provided by the hospital. Her blood cell counts returned to normal and she was discharged after spending most of six months in hospital.
 

It took a long while for Gilly to recover and adjust to normal life. She received no rehabilitation services from the local authority and injured herself repeatedly by falling. She had six-weekly check-ups at the hospital. After five months she realised that her energy levels had altered and discovered that the leukaemia had returned. She spent 5 weeks in hospital then was discharged while they tried to find a suitable bone marrow donor for her to have a transplant. While waiting she was readmitted for 3 days because of an infected central line. When she went in to start the transplant preparation she was sent out again because her blood cell counts were not suitable. Eventually she went in for her transplant preceded by intensive chemotherapy. She is now recovering at home and takes a variety of medications to deal with the symptoms of rejection, which currently include a rash. She has a check up every week.
 

Gilly has taken no interest in finding out information about her illness and treatment, preferring to place all her trust in the professionals, both medical and complementary. Gilly has been gratified and overwhelmed by the support, both practical and emotional, that she has received throughout her illness from her wide network of friends and neighbours.

After 5 months in remission, when she was just beginning to think about returning to work, Gilly...

And I was going for six-weekly check-ups and the leukaemia came back in July. And I realised I think, again, in about the June that my energy had altered again. I was also very aware that the hospital had saved my life once and I’d come back. I was aware that I could die so popped back in again.

 

And this was for about five weeks and basically I knew that they couldn’t do anything else with the chemo, it would be a bone marrow. And I would say that that visit in the July and August was, even by my standards it, on a kind of conscious level, mentally extremely tough because my levels had, my neutrophils hadn’t come up, I had no immune system, I was still very ill so I couldn’t leave. And it was this intensity of just being in one room knowing that I couldn’t leave, that I had to kind of pull on some fairly deep power to keep going, but they eventually were, I was able to come out for, like, one day to come and visit the house and then go back.

 

And I was just beginning to move into maybe taking some more students back on again, and that’s when it came back, that it had come back. And I think that’s why when it came back it was a massive kind of cognitive intellectual ‘Whoa’ this time because I was conscious when I was then given the second diagnosis that it had come back. And I thought, “Okay. Here we go again.” So you just get your stuff out, get your suitcase out, go off on retreat. By this point everybody knew. I just phoned up six people, they knew exactly what to do. Everybody had the keys, it just got a bit like déjà vu, so everybody knew what they had to do. But I knew that if I didn’t get a bone marrow donor that I’d die. And then, as I said, if that’s the journey I would have to take that was the journey I would have to take.

A complementary therapist herself, Gilly was pleasantly surprised that her hospital offered a...

I’m somebody who’s worked in the complementary world for years, I made a decision, although I did do the classic statement, it does seem at one point on the second day in hospital, that my body is my temple. So I realised very early on in my kind of confused state that I just had to trust them implicitly in what they were doing, and that the drugs would do whatever they did, and that the complementary side, which, again the hospital provided with reiki and massage and therapy, would support me. So I actually got the best of both worlds. So I got the phenomenally intensive drug regimen and at the same time holistically could support myself through the hospital as well as through all my wonderful friends and community.

 

Okay. So a few incidents with your health professionals but on the whole what were they like?

 

I think where I was unusual in that they had a very, unusually for the NHS, a very holistic point of view, that they wanted to put the patient first, although eventually I said, “Forget it. You put the cancer first. Let’s get two things straight.” So they were always very, as I say, matter of fact is the wrong word. There was that sense of clinically this is what had to be done, you had to have this at this time and this at that time, and yet there was that sense that you were an individual. I mean at times maybe I didn’t feel I was, because you just, it’s like a kind of leukaemia factory. You’ve just got to be, you know, this stuff is being poured into you. But I think that the balance they have there between this phenomenal complementary side - which you could access at any time during my period - and the medical side, is a very beautiful model. I think there’s more that can be done but as far as I’m concerned it worked.

 

Can you tell me a bit about all the complementary things you were able to get in hospital?

 

It was automatic that you could either have reiki, you could have massage, you could have reflexology. There’s a therapist there, welfare rights officer. And you would just ask for it and it would come. And sometimes in actual fact the staff would say, “Would you like something today?”, and they would book it in. So throughout my period, maybe once, twice, three times a week an alternative practitioner would come in and do whatever. And I think it was open to both family members as well.

While Gilly was in hospital a large network of friends and neighbours looked after her house and...

You said you had lots of support from friends and your community. Can you tell me a bit more about that and the ways they supported you?

 

Well, they just took over my life. As nobody knew it was going to happen I just did three phone calls to my three wonderful neighbours to feed my cats, and it was from that. And this, because I had my address book with me it basically filtered out. I have no idea because I was actually hallucinating from - I was in on the Tuesday - from the Wednesday, so I have very little conscious awareness of what happened, but all I do know is that the address book was there. At times I would phone somebody up who would then phone somebody else up. And eventually I was just inundated with, I mean I can’t tell you, I mean I had cards wall-to-wall. And it just became a network of somebody would hear and would phone up, would call.

 

What became fascinating was that each person I realised would work to their strengths. So one of my students would do the garden, somebody would come and feed the cats, sort out the heating and it became huge numbers of people. So some people, because I live in London, would be helping physically with the house, like the car needed a tax disc, you know, how do we go about that? We do this in three stages. I had to have a new pair of glasses, so somebody could go and pick those up. These might sound very small things but it is really complicated, you know, banking details, I had no money. So there was that very practical, you know, bringing food into the hospital, bringing in stamps, to the point of friends who lived far away and who would phone once a week. Cards would come, letters would come. People would chant for me, people would pray for me. It just went on and on and on and eventually it’s just this huge network.

 

And all I can say is about at times people say about London that it’s a very isolating place and that there is no community, and I have to say that is, in my experience, completely untrue. And eventually because I’ve been ill for such a long time, for eighteen months, people got into this rhythm. They have their own roles to do and they’re more than happy to do them. I mean I have no idea how it started. I’m afraid I was out of it when it started but it just happened and I’m eternally grateful.

Gilly spent 3 weeks in intensive care where she felt completely cared for and had no fear of...

And they got me kind of set off to go down into critical care and I was absolutely shattered, and there’s this amazing Irish nurse, one of them, who all are quite amazing in their own ways, and I said, “Right” - when I was in and out of consciousness - I said, “I can sleep now.” And she said, “No.” I said, “But it…” I didn’t know what time it was because again in hospital time becomes completely disorientating, and I said, “I want to sleep now and you can sort out what you’re going to do in the morning.” And she said, “We don’t work like this here.” And I said, “But I have got to go to sleep.” And she said, “Gilly, we’re saving your life.” So I remember going down and my eyes were always covered because the light was so so strong. And I entered the critical care unit and this team arrived. And I remember lying really still as femur lines went in, central lines went in, intravenous lines went in. And that was my life for about three or four weeks with twenty-four seven care.

 

And I have many recollections. I mean I’ve written two journals of actually being and of becoming more and more ill but also realising I couldn’t leave, I couldn’t do anything. And there used to be great times when they couldn’t get all the drugs into me. It was a bit like you know when you’re over an airport and you have to fly around the airport, it was like stacking, so you had to wait. And the first lot of chemo drugs arrived and I remember lying there thinking, “I wonder if I’ll be sick. This should be interesting.” And I wasn’t. So that was fine. But eventually after a few days they had to stop that because I was dying. And I think the other thing I realised was that they just totally cared for me. They just did everything for me.

 

And by this point I was on full oxygen and I could only breathe for eight seconds at a time without oxygen. And my world, my external world had gone completely and all my world was just this group of people who, the professors, the consultants would come in, the doctors, whatever. And there was such gentleness. And friends would arrive and I really wasn’t quite aware of what was going on and I seemed to sleep. And I invented this land called the land of Anaconda where I’d go off and take all my friends and we’d have wonderful times and then I’d come back. And I just came back to my yoga practice because the sound of the, intensity of the oxygen mask was such that I didn’t really sleep. So for about nine days I didn’t sleep. So I would just chant and I’d go back to all my practices and then I’d wake up.

 

And I always remember the rhythm of the cleaners coming in. And they were cleaning everything and then they’d leave. And then somebody else would come in. And all I can say at that point I had absolutely no fear of dying. I can remember when, the day they set everything up to say that they knew that that was it, that there was nothing else they could do. And I remember being propped up and I had cannulas and lines everywhere. And my wonderful professor came in, and the level of exhaustion is just, one is just sitting there. I’d become mute because I realised that if I stopped talking it would save more energy, because that way I wouldn’t have to talk. So we’d write. But by this point I could hardly see, so we’d have a little white writing board and I’d write, say, two or three words or something.

 

And I remember this day as I sat there and they’d propped me up and I remember him coming in and he said, “What do you want?” And I remember just putting my

Gilly was very weak when she went home from hospital and could do very little at first; she got...

The first two months I really stayed in the house, I was very weak, very tired and just actually getting used to really living here, just because I mean often, for instance, getting up in the morning I could take up to two hours just to move from the bedroom to the bathroom. Ordinary things like having a shower, then working out what to eat, going and lying on the sofa. Everything was very slow. I was physically very weak. I was falling a lot. I have to say that there was no physio or rehabilitation and I seriously damaged both my arms by very serious falls in that period of time, which I was actually very angry about because I’d kept myself very good and the local authority just didn’t come in on day one.

 

So there was a lot of actual getting used to being back in the house, of, ‘Do I put on the washing? No, I can’t. I’m exhausted. Go and lie down. Can I make a cup of tea? Yes, I can. No I can’t.’ Maybe I’d be up for two hours in the morning then I’d rest, then I’d sleep in the afternoon another two hours then go back to bed. But slowly what happened it began to evolve. I’d think of a little project to do, maybe open up the back door and go and stroke the cat out in the back garden and then come back in again. And then I began to, I could barely walk, so I began to kind of do little walks from the house to the car. And then a friend would come out with me and we’d drive round the block.

 

So it was a really gentle reintroduction back into life.

Being single Gilly was glad that no one person had to cope with the emotional trauma of her...

I think the other important thing to say is the fact that I live by myself. And what I realised, which is a really strange thing to say, is that I found it better not having a partner. And the reason was that I have had so many people and friends and communities helping me doing little things, it has meant that not one individual has actually been completely embroiled in the emotional journey that they go on. Each of my dear friends, my very close friends have been, I think, very, at times, emotionally devastated by what’s happened to me. But in a way it’s been carried by many, many, many people. And I can remember at times, going through the ward when I was in hospital and watching relatives and you can just see they were devastated by their loved ones, and the drama that that causes. So there actually is a real upside to being single, many, which, in a strange way, if somebody had said that to me two years ago I wouldn’t have thought that. But I found that that’s been really helpful.

 

And the other thing is if you find that there isn’t a family member, then I would just ask the staff and say you wish for an advocate, you wish somebody to come and to be, and that’s eventually again I said I kind of, I’m single. My God, how wonderful. And at one point when I found things got very complicated I actually asked for one of the members of staff to become my advocate so that they could, I could kind of say to this advocate what I required, and that they in turn could interface with the medical team.

 

Because again, being single has got wonderful advantages but at times when you’ve had a really bad experience, maybe, you know, you’ve had a huge reaction to the drug or you’re in pain or whatever and you just want to scream and yell, and at times I was unhappy with what had happened in a particular procedure, you then have to try the next day and say, “Look. I wasn’t happy”, and it gets very convoluted. So I would advocate getting an advocate, if that makes any sense.

Gilly was grateful that the hospital welfare rights officer told her about state benefits and...

So you weren’t eligible for any state benefits?

 

Miniscule.

 

You did get something?

 

Miniscule, yes. But that was only because the welfare rights officer was just brilliant at working out, I mean I could not have done it. I mean how on earth you’re meant to apply for stuff when you’re drugged out of your brain? You can barely focus and you’re meant to fill out a fourteen page form, I have absolutely no idea. And you’re meant to do it within fourteen days and provide all the documentation and you happen to be four miles down the road. I mean just begin to get real here. And they want sixteen bits of information which you don’t have, and your mobile phone has just gone dead. So I mean the one thing I can say where I was at was the fact that we had a brilliant welfare rights officer who was able to come in with all the various forms, fill them in for me and send them off. And half the time I had no idea even what I was eligible for, and also when they made mistakes, which was interesting.

When her AML* recurred Gilly needed a life-saving stem cell transplant and, being white, had a...

They’d put me up for a bone marrow match, so I left and that was a very strange period again between knowing that the drug treatment, which is very intense, could no longer halt the leukaemia. So it was really a question of, again, in this other world of thinking, well, at some point if a donor comes up then I will have life, and if a donor doesn’t come up then I will die.

 

So the call came through that they’d actually found a donor and I discovered it was a male donor, a foreign male donor. They won’t tell me which country. And again I had to go back for the various kind of procedures, which is just exhausting. I think the one thing I can say is the tiredness of, however much you adore the hospital, and you have to go for your MRI scans and everything, it goes on and on and on, the actual exhaustion of just waiting.

 

And I’d also like to say at this point, that as a white woman I had a seventy per cent chance of getting a matched donor, but anybody within an ethnic minority in the UK has only a twenty per cent chance of getting a matched donor. So anybody from the ethnic minorities who is watching this who is under forty just donate your bone marrow. It’s really simple, and contact the Anthony Nolan trust.