Harriet - Interview 1

Age at interview: 55

Age at diagnosis: 20

Brief Outline: Harriet was originally diagnosed with ovarian cancer aged 20 and though she has had some long periods of remission, four recurrences later she remains both vigilant and positive.

Background: Harriet is a management consultant and is married. Ethnic background/nationality' Jewish/Russian/Polish

More about me...

Harriet was originally diagnosed with ovarian cancer aged 20 after experiencing a range of different symptoms. She had surgery to remove her left ovary and a low dose of chemo to try to preserve her fertility. About fifteen months later a second tumour was diagnosed on her right side and she had a radical hysterectomy. This was a big decision for Harriet particularly because, at that time, fertility technology had not been developed. The surgery was effective and Harriet had 23 years without any reoccurrence.

 

During this period of time Harriet describes living life at “double time” because she felt there was a constant “Sword of Damocles” hanging over her. She had regular examinations for fifteen years and then was discharged as a patient and had yearly appointments with her GP. After 22 years, Harriet developed some symptoms that worried her; she had to go to the toilet frequently and developed mild dysphasia. She also stopped being able to sleep on her stomach comfortably. While her GP was not concerned about these symptoms, a second GP in the practice gave Harriet an internal examination and referred her for an ultrasound as soon as possible. The scan showed a large tumour in her groin which Harriet describes as “huge and messy and terrible”. The surgery to remove the tumour was lengthy and groundbreaking and left Harriet in intensive care for several days, unable to care for herself. Harriet describes noticing a ‘cancer smell’ when she has cancer which is not offensive, but different.

 

Shortly after the surgery Harriet developed lymphoedema and was unable to move her leg properly which she found distressing. She attended a lymphoedema clinic where she learned how to manage it and keep it under control and began chemo six weeks after the surgery. Losing her hair was also distressing although she got a selection of wigs which she named after her nieces.

 

Harriet spent a year doing all the things she wanted to do, like visit the Grand Canyon, and then started to take the years for granted again. In 2006 she began to notice small signs that worried her, for example, the ‘cancer smell’ returned. The cancer had returned, in its very early stages and Harriet had more surgery which debalked rather than removed the tumour. Nine months later the tumour began to grow again and the only option left to Harriet was chemotherapy which she is currently trying. As she says “It’s been a hell of a journey and I don’t know that I’ll ever have a normal life again”.

 

Harriet thinks laughter is a “tremendous cure” and she thinks that the love and closeness of her husband and family are the most important things in her life. She attributes the closeness of her sisters and brothers and the importance of family to her Jewish culture. Her siblings have supported her throughout her cancer treatment, staying in the hospital with her and helping her to find humour in the experience. Harriet’s husband has also been supportive though Harriet feels it is very hard for partners and there should be more support for the person who may be left behind. She has also valued both Rabbinic support and the support of her Jewish community throughout her experiences. Harriet describes herself as a tremendous fighter with a lot of spirit and while she doesn’t know how effective research about prayer and its positive effect on survival rates is, she says she likes it so she will listen to it.

Sometimes the response to a partner's illness may be anger. Harriet thinks it is important to...

The only thing I would talk about would be the importance of the support for your partner and recognising the amount of anger that’s around at God, at the system. I know a lot of people, who, Jewish or otherwise, will lose faith at times like this and they want to get angry at something. Sometimes in partnerships it ends up that the partner who gets angry is the one who hasn’t got the disease and they get angry at the one who has. They start grieving for their loss before their partner is dead. You have to really work at the relationship staying both open and connected because my experience is you have moments where you get very close, very teary and very sad, and then there are these other periods where you almost become too distant from each other because it’s almost too painful to be close. I just think it needs a lot of work and that the partner of the person with cancer often feels in the Jewish sense a bit like chopped liver. It’s like “Everybody is asking about the person with cancer. What about me? I’m going through something terrible here. I’m losing my wife.” They need a lot of support in a different way and to be acknowledged when these things are going on. 

 

[Surgeon] always made sure to ask [husband] about how he was, and how was he coping with stuff. The Rabbis that I mentioned earlier also all spent time, (not as much time as they do with me) talking to [husband] to see how he’s doing. He’s not Jewish, but he’s certainly part of our community in a big way, and part of my life, and so therefore they support him. That’s one thing that I think I didn’t talk about that’s quite important. 

 

Harriet belongs to a Liberal Synagogue and felt that her pastoral needs were very well-supported...

I mean you said as well that you had Rabbinic support and movement support. Could you explain that?

 

I’ll talk about the movement. Liberal Judaism as it is now, was then called Union of Liberal and Progressive Synagogues. As the Chair of a community I was a congregant that was known to them and because I was the Chair of a community I had flowers and letters from the then head of the movement. It was a pastoral support thing and I thought that was very nice. 

 

In 2004 I was the interim Operations Director for the movement for eighteen months and we didn’t send cards and flowers to just any member, they had to have either a role within the movement or a very important role within their community such as being the Chair. So in that sense it was nice to know that I was cared about by this big organisation.

 

As for Rabbinic support, I was very close with our Rabbi because I was active in the synagogue anyway. Every synagogue Rabbi has to provide pastoral care for congregants. So if someone is very sick, particularly with a life threatening illness, it would be only appropriate for a Rabbi to come and visit you in hospital, come to your home, phone you to see how you’re doing and so on. I’ve been very blessed because we had a wonderful Rabbi when I first took over, who retired very shortly after I became the Chair, [name] who came over to England with the Kinder Transport, a fabulous man, the warmest, kindest gentleman. And he always was very concerned about me, and would call and ask “How are you?” and send me cards or whatever. We took on a student Rabbi when he retired, named Rabbi [name] who is a very good friend of mine as well as our Rabbi and I just found that I could have very helpful philosophical discussions with her about life and death and talk about what was happening for me in a very straightforward way, because she was just that kind of person. It was part of her role as a Rabbi, but also we were friends so it was doubly beneficial. 

 

When Rabbi [name] left we got another Rabbi, Rabbi [name] who again I enjoyed and got a lot from my relationship with her, but I wasn’t sick during her time, and now we have a Rabbi named Rabbi [name], who again is a very good pastoral supporter and at least once every two weeks, if not more often, I get a call from [Rabbi] to see how I’m doing, to see if there’s anything I need, to see how [name] my husband is doing. I have moved physically quite far out from the heart of the community, it’s a good 25 miles to get there. There are only a few of us out this way so I don’t expect her to come, because it’s too much really, and she’s only part time. 

 

But what I think is great is that she’s in constant touch and if I asked her to, she would come. She would be here in a heartbeat and certainly she was at the hospital immediately after my surgery and was always asking ‘did I need anything?’ making sure that my pastoral needs as a Jew, as well as a person, were being addressed. So that’s what I mean by Rabbinic support.

 

Harriet thinks being very close to her sisters is part of the Jewish family experience. After her...

For example, when my sister and I were in the hospital, apart from her attending to my needs, we’d just go nuts, and we’d laugh and decorated my entire room by anthropomorphising every item that existed. So we had a Mr Potty- a bedpan with a face drawn onto the bottom, Mr Television and Mr Lamp. I mean everything was decorated and became something and we were just hysterical with it. But it all started with my foot because I had to wrap it up in scarves because it felt so cold as all the nerves were going crazy - your nerves go crazy after surgery like that. We dressed it up in a sweatshirt and gave it hands from rubber medical gloves, eyes from wrapped, round, chocolate-covered mints and my foot became “Mr Gorky”. He had a Russian accent like my grandmother and it was hysterical. We just got silly.

 

I think laughter is a tremendous cure and it certainly kept my spirits up. So, is having sisters like I have. I think that is part of the Jewish experience, but I don’t think it’s uniquely Jewish. I have sisters who will be there for you. I mean who would come and live with you for two weeks in a hospital? And she’s not done that once, she’s done that twice now.

 

And the other sister, who had much younger children, would have done that, but couldn’t get away, but certainly came and stayed with me, for weeks at a time, while I convalesced. I thought it was pretty amazing. My husband was in the hospital every day too. I just think family and the family support was incredibly important. I also was the Chair of my synagogue at the time, and had agreed to take that role on just before I discovered that I had the cancer returning but thought, well why not? Obviously if I survived this I should be able to handle that. I had tremendous support from my community, where people would cook for me, and come and clean my house, and one woman came every day and gave me a foot massage. I never felt that I was ever alone, even without having family living in this country. I think I was very lucky to have such a caring community around me.

 

Now I know that other faith groups will do that sort of thing, so I don’t want to say that it was uniquely Jewish, but I feel it was very much a Jewish experience for me. There was also Rabbinic support and Movement support. Because I was a Chair I was known to the umbrella organisation and they were very kind and supportive as well. So there’s a lot to be said about the power of the Jewish community and what it can do to help people in their time of need. I’m very grateful for that.

 

You talk about the support of your sisters as being sort of like a Jewish experience. Can you explain to me a bit more why you think that’s related to being Jewish?

 

I have a lot of friends who are Jewish and a lot who aren’t. I hesitate to describe things as uniquely Jewish because that’s unfair, but I think there is a very strong element in Jewish culture of strong family ties, that family comes first and is more important than anything. Your Jewish community is second and then the rest of the world follows that. My sisters and I are extremely close, I think even more than most Jewish families that I know of, and my brothers for me are the same but because they’re brothers it’s slightly different. The first time I was ill, my brothers had much younger families so it was harder for them to get away to support me.

 

In 1999 it was just my two sisters who came in person. But in 2007 one of my two brothers who’s a lawyer came over and he wanted to make sure that everything was all right. He wanted to know what the surgeon knew. He wanted to see that the ducks were all in a row. He came for three or four days before

Harriet feels that in Britain, patients are expected to be good listeners and do as they are told.

While I was under the care of the [hospital] I remember having some real issues with the difference between the way consultants and doctors treated patients in this country and the relationship that I had with them in the United States, which to me was much more human at the time. In the USA a patient was able to talk to her physician, ask questions, challenge and be part of the healing process, where in Britain, patients were expected to be good listeners and do what they were told. I found that very, very challenging.

 

I remember asking my first UK consultant why I should trust him with my life when I got to hospital, and [laughs] his reaction was anything but positive as far as I was concerned. He was trying to blind me with science, which he couldn’t because I understood all his big words, and I wondered why he felt I shouldn’t I be able to ask him what he knew. However, I got good medical care. I don’t want to fault the care, and after about fifteen years, they cut me loose. They said, “Well you’re done. You’ve survived fifteen years. It’s not going to come back. You’ll be fine.”

 

Harriet discusses the use of cold caps and hair loss. "If the nurses see you as a person rather...

And the other nurses there said yes, use the blue. Sure enough a lot of the people that use the pink, get a strip of baldness and they have to do a comb over, because the caps don’t fit flat on your head. So you don’t get as good a freezing. Anyway these are just details. That was private information, nowhere does it say don’t use the pink, use the blue. Sometimes developing relationships with your nurses so that they’ll talk with you as a person, not just as a patient, is really important. I’m sure they would give the same advice across the board to people, but they might give it in a slightly different more friendly way to someone who builds a relationship with them.

Different types of information are useful at different times. Harriet found a video on Ovarian...

At different times different sorts of information are very useful. In ‘73, 4, 5, 6, they just didn’t have what they have today, and there was very little. But when I was diagnosed in ‘99 I certainly got in touch with Ovacome, a support group for people with ovarian cancer. I’m a member of Ovacome and I’m a member of the Lymphoedema Support Network. I have gone to meetings which I haven’t found very useful from Ovacome, but that doesn’t mean that others wouldn’t have. I felt like I was too much of a veteran in a way. I had been around this too long. The Lymphoedema Network are mostly about literature and lobbying. I did that Arm and a Leg Clinic which was like a three week support group. Ovacome were incredibly helpful with information. They have a video about ovarian cancer and what the different stages mean and so on. It was really useful to have the kind of resource in my living room that I could watch slowly and take it in. I found all the various Bacup support materials are very good [now merged with Macmillan Cancer Support], and it just depends what you need at a given time. There are some leaflets on fatigue that are quite useful, but you don’t need to have them until you have the fatigue.

 

I’m using a cold cap now which is why I still have my own hair. It is absolutely torture, I mean it is unbelievably painful to do that. It’s freezing your head. For the first ten minutes, it’s like ‘agggghhh’. I cry from the pain of it, and then I can manage. I change the hat three times through my treatment, so when I have it on for the first half hour, the first ten minutes are excruciating. And then I get the next one and the first seven minutes are excruciating. And that stays on for 45 minutes, and by the time I get the third one, you can’t really tell what’s going on. It’s not so bad, because my head’s pretty frozen by then. 

 

I’ve been learning about chemo and hair loss and the leaflet on hair loss and how to manage that is good. I’m doing something right because my hair is still here. But not everybody is as lucky as I am, and apparently there are two different kinds of caps. There’s the blue one which is the old fashioned technology that comes out of a freezer and there’s this new pink electronic one. I knew one of the nurses very well at the [hospital] because she used to work in the surgery clinic and now she’s on the chemotherapy day unit and she looks after me - she’s one of my little guardian angels and she said, “Don’t use the pink. It’s the new technology, but don’t use it. It doesn’t work as well. Use the blue.” 

 

I think you have to have life beyond cancer, and some people are so immersed in it that it’s not that helpful, but I think when I’m ready for information I go looking for it on the web, in libraries, and somehow the right thing tends to fall in my lap.

 

Molecules of Emotion is a book by Caroline Pert. She was a scientist who began talking about the impact of emotion on the physiology of the body and how that can really help and or hinder your cancer, and just started opening up ideas like the more you can get your endorphins working, the more you can have strong immune system. Whether that’s going to cure your cancer or not is another issue, but it certainly will help you deal with the treatments that come at you. It was interesting in that it was a scientific woman writing about a scientific process and also talked about some of the politics in health research and health development which made me question a lot of stuff that was out there. For me it was a book that opened? my mind to many aspects of things. I felt it was good.

 

Harriet says "you have to be your own advocate at every stage of your treatment"

I think the best piece of advice or information I’ve ever been given is that you really have to be your own advocate at every stage of your process and don’t just take it as given. Always understand and push and be sure that you’re happy with what you’re getting and that the quality of your care is what you expect and deserve. Even in a place like the [hospital] which is brilliant and in the private patients’ day unit where you would expect it to be incredibly brilliant, there are systemic problems and there are process problems. My experience as a recipient sometimes has been more stressful than I believe it ever should have been. There are some who agree with me and I had to complain on one occasion, well I was asked to complain by the nurses, and it got taken very seriously. I’ve noticed since then there are improvements. 

 

You really have to stand up for yourself and to make sure that what you’re getting is right for you, and that you’re treated with dignity and respect and low levels of stress because you don’t need any more stress than you’ve already got when you have cancer. So that’s a big piece of information. I don’t know where I picked that up but I certainly have held on to it and it’s stood me in very good stead. 

Before the latest recurrence of her cancer Harriet had hoped to draw on her background in...

I have gotten involved with the Maggie Centre. What I had decided to do, funnily enough, before this last recurrence, when I was moving out to [town], I thought I could do something very positive with my cancer experience and my skills as a psychologist. I had spent some time with the Bristol Cancer Help Centre where in 2000 my husband and I went for a weekend, and I learned a lot. I thought, ‘Oh I’ll go to some of the courses they run for practitioners and see what the latest thinking is before I set myself up’. 

 

So I enrolled on a number of courses there on nutrition, on endorphins, on all kinds of mind/ body relationship stuff, on guided imagery and so on. While I was there somebody was on the course with me from a Maggie Centre. I’d never heard of the Maggie Centres. I knew about Bacup, I knew about Macmillan, I knew about lots of things but I had never heard of Maggie. It sounded like a really good scheme. It’s a kitchen table approach to cancer care. You come into a homely environment, they make you a cup of tea, there are biscuits on a kitchen table. Nobody wears uniforms but they’re all professionals and so on. And I thought I really like the sound of that. When I called to find out what was available to me locally in terms of support, I talked to the Palliative Care unit at the [hospital] and they said, “Well do you know about the Maggie Centre? We have one here at the [hospital]” Oh great! 

 

I did go along and I have a monthly session with their therapist. I went a little more often to do mindfulness meditation training initially but I wasn’t feeling like I needed to go on with this with my background in psychology. I needed a place once a month or so to just offload everything without having to worry about anybody’s feelings, particularly when I was looking into the abyss. I guess I’ll look into that again, but it might not feel as scary this next time, because I already know how scary it is. But maybe it will, who knows.

 

I go for one-to-one counselling. They sometimes have an art therapy group. I went to a six week block of sessions, which I found very useful. It was a little group of people who supported each other, but it’s not a regular, on going support group. I enjoyed it and I found it useful.

 

Harriet had various chemotherapy regimes to treat the recurrences of her ovarian cancer....

There was a big concern that I was going to be in serious trouble, because the tumour had ruptured, the fluid from it came out as the aforementioned green discharge, which would have left cancerous cells to float all over the place. And they were concerned to try and preserve my fertility. I had lost my left ovary in the first surgery. It was surrounded by a sort of grapefruit sized tumour that I never felt. All the time I travelled I felt a bit of a fullness in my tummy, but I just thought it was from travelling or whatever, but I never had any sense of having had that disease. In order to try and preserve my fertility in my right ovary, they gave me a low dose of chemotherapy. I think it was Taxol.

 

For about thirteen months following the surgery I was okay and I was having regular exams, first monthly, then quarterly. But then I had one and I could feel I wasn’t okay. The bottom line was that I had a new tumour on my right ovary. We know now that the low dose of chemotherapy probably wouldn’t have worked anyway because my tumour, which was called a borderline ovarian cystadenoid carcinoma, doesn’t respond very well to chemo. So that’s when I had to have quite a radical hysterectomy. Almost anything I didn’t need to survive was taken out.

 

So I had that surgery. And at the end of the operation they did saline washes, so they told me, and found that there were no cancerous cells left anywhere. So they sewed me up, and the decision was not to give me any further therapy and just watch, and I went for 23 years, with no recurrence. 

 

The gynaecological oncologist I saw at a local private hospital, after carrying out a few tests, felt my case was outside of his remit, and recommended that I saw a fellow named [surgeon] who to me is one of the finest surgeons that this country has to offer and a true gentleman and just one of best human beings that I’ve ever met. I remember going to see him and he did an internal exam and asked a lot of questions and said, “Well if this is operable. . .” Before he could finish his sentence, I said, “What do you mean if?” and he said, “Well it may not be.” He confirmed that I had a very large tumour in my groin and said until he saw pictures, he didn’t know what the story was, but he felt that I was seriously compromised by it.

 

Anyway I went in for the surgery and it was successful insofar as they could debulk the tumour but they couldn’t remove it all. They couldn’t get a wide margin, which I guess most people will understand, but some people wouldn’t. When you remove a tumour you want a margin of healthy tissue around it, and when they take out the tumour, they ink it and then they see how close to the margins the disease is. The reason they put the ink on is because no matter how amorphous the material is they can always know where the edges were. And where last time they got quite a wide margin, on this particular surgery they didn’t and that wasn’t such good news.

 

So then the big decision was what do we do now, and what am I candidate for? And what we had established was that I wasn’t a candidate for any kind of radiation either proton or photon. One is more scattered and one is more focused. And where I was definitely not a candidate for the standard scattered type, the more focused one was a possibility but they don’t offer it in the UK other than for eye and brain cancer, but they do offer it in the US.

 

So my stuff was sent off to the boys at Harvard to see if I was a candidate but I’m not because the tumour is very deep and it’s located near my vena cava and my spine. So, there’s no way surgically to get a big margin and if they shot radiation at that area it would

Harriet said if she had known how fast her hair would fall out she would have had it cut short...

Within six weeks of that surgery I had to start chemotherapy, which was kind of scary, because even though I’d had it before I’d never had a full blown treatment and I knew I was going to lose my hair, which was a big issue for me. I had this huge mane of hair which was very thick and luxuriant. It was my trade mark, and it hurt, more than anything, to see all that go. And boy when it went, it went fast. I didn’t realise what it would be like. If I had known I would’ve shaved it all off before because I left this trail of hair everywhere for weeks. Within two weeks of getting that first injection it started to fall out and was pretty embarrassing. But it was a small price to pay for life. 

 

The first wig I got was a synthetic one called ‘Rachel’ - that was the model name. I had a niece named Rachael. When I had a good one made I named that one Sarah after Rachael’s twin. Next I bought a short one for the summer, so that was called Mira after another niece. I think the key thing was having a sense of humour with whatever had been going on. 

 

Harriet experiences fatigue, diarrhoea and numbness in her feet and hands after chemotherapy. She...

Every week of treatment I would go down about ten points, but then on my week off, I’d go back up 30 points. So I was playing three steps forward, three steps back, not even two steps back, but three steps back which is depressing because while this new regime isn’t as demanding as the gemcitabine was, it’s still very debilitating and you never get back to your starting point. Most people know that you have chemo and you start at A and you don’t ever recover to A, you recover to A minus 10, and then you have chemo, and then you recover to A minus 20, so you keep going down. And it is harder, and harder to bounce back. It’s just mostly fatigue and numbness in my feet and hands and diarrhoea that are the main things that happened for me. But the diarrhoea isn’t constant, and the numbness doesn’t really stop me from doing what I need to do. It’s just slight in my hands, it’s much stronger in my feet. But I can still walk normally and stuff so that’s okay. But the fatigue really gets to me now.

 

I’m using a cold cap now which is why I still have my own hair. It is absolutely torture, I mean it is unbelievably painful to do that. It’s freezing your head. For the first ten minutes, it’s like ‘agggghhh’. I cry from the pain of it, and then I can manage. I change the hat three times through my treatment, so when I have it on for the first half hour, the first ten minutes are excruciating. And then I get the next one and the first seven minutes are excruciating. And that stays on for 45 minutes, and by the time I get the third one, you can’t really tell what’s going on. It’s not so bad, because my head’s pretty frozen by then. 

 

Harriet has to wear compression stockings to manage the lymphodema in her right leg.

Anyway, my story continued and over time I got better and went back to work. I found the Feldenkrais method as a way of getting rid of the terrible backache that had developed as a result of my leg being so huge and my muscles being weird. That really helped me learn how to use my body in a healthy way, so I wasn’t getting backache all the time. I had a lot of lymphoedema treatment for my leg, which was fantastic and my leg became less elephantine. After a while I ended going to an intensive three week lymphoedema clinic called An Arm and a Leg, which no longer exists because they can’t get funding for it. There I lost a lot of extra fluid off my leg and learned how to manage the lymphoedema and keep it under control.

 

Lymphoedema is a terrible secondary effect of cancer that a lot of people don’t talk about and there are areas of this country that don’t have any kind of lymphoedema treatment centres or whatever on the NHS. It’s just so important, because if you don’t deal with it, it can become a very big problem and it’s something that is relatively cheap and easy to deal with, and yet because it’s not a priority, it doesn’t get a front line kind of treatment from the NHS. I have to wear compression garments every day - those lovely thick stockings that grannies often wear. That’s been my joy since 2000. Without them my leg would swell up and I can’t walk properly because I have vascular issues as well as lymphoedema because I don’t have the two main veins going into my leg. As they rebuilt the artery it’s like I have the M4 and M40 going into my leg, but not coming out, the veins are blocked going out. That’s not easy to manage. So suddenly I had a 90 year old’s leg on a 45 year old’s body. That’s challenging to the rest of me at times, so the lymphoedema is something I worked hard on to get as right as possible.

 

Harriet lived her life at double speed as she was never sure how much time she would have left.

I had a pretty wild life. I had a lot of fun. I married and I came to live in England and I eventually got divorced, and then I had a number of interesting relationships and partied hard, and worked hard and built a career. I felt that I was doing everything double-time though. I felt like life could be very short. There was a constant Sword of Damocles hanging over me. Every year I’d go for these checkups, well initially it was more frequently than a year, but then after five years, it was annual for about twenty years.

 

There was a movie out recently called the “The Bucket List”, well I was making bucket lists long before that movie, I made a list of all the things I wanted to do and the people I wanted to see and acted on it before I kicked the bucket. Some of them were very simple things like being with my family, which I always knew was really important. What comes very much to the fore is the people you love; they are more important than anything, for me. 

 

There were some experiences that I wanted to have. I wanted to see the Grand Canyon and so I did. I wanted to see the two big Botticelli paintings that I’ve adored all my life again. And I did. And so on. So I had lists like that but, after that year I started to take the years for granted.