A-Z

Ingrid - Interview 48

Age at interview: 61
Age at diagnosis: 58
Brief Outline: Ingrid was diagnosed with breast cancer in 2008, aged 58. She had a mastectomy with immediate LD flap reconstruction. She also had chemotherapy, radiotherapy and Arimidex. During chemotherapy, Ingrid had a bi-lateral pulmonary embolism.
Background: Ingrid is a married senior researcher. Ethnic background/nationality: White British.

More about me...

Ingrid found a lump in her breast when showering. She saw her GP immediately and was referred to a consultant. She was diagnosed with breast cancer, aged 58, and had a mastectomy with an immediate LD flap reconstruction. This involves moving a large muscle and some overlying fat and skin from the back of the body to make a new breast. Her surgeon was able to retain her nipples. Ingrid later had chemotherapy and, shortly afterwards, radiotherapy.

Chemotherapy was a very difficult time because Ingrid had severe diarrhoea, nausea and felt extremely tired. Some days having a shower was exhausting. On the days she felt well, Ingrid found she often did too much and could do very little the days following. She also had two emergency admissions to hospital, the first one because of a bi-lateral pulmonary embolism (a blood clot in the lung). Ingrid said she was happy with the care she received from her GP, consultant and the emergency services. However, she found that the nursing care varied. Her needs as a patient who was unable to do much for herself and basic hygiene were often overlooked.

Ingrid said radiotherapy was ‘a breeze’ compared to chemotherapy. She was also prescribed Arimidex and had some nausea and hot flushes at first. She still often has joint pain in the mornings.

Ingrid had no problems with her surgery and was happy with her reconstruction. After having radiotherapy, though, she has had discomfort in her shoulder, though fortunately has not had lymphoedema. She now visits a physiotherapist, where she receives lymph drainage treatment, which she has found helpful.

Ingrid said that, before she was diagnosed with breast cancer, she’d had mobility problems and had had a hip replacement. She was aiming to have a second hip replacement operation when she was diagnosed with cancer. She’d also had knee problems, all of which made her experience more complex.

Ingrid had a lot of support from her husband, family, friends and colleagues. Going back to work was very important to her as it was an integral part of her identity. With hindsight, Ingrid wished she’d been told that it could take two to three years to recover, which was longer than she’d expected.
 
 

Ingrid delayed going for breast screening and found it difficult to re-arrange her appointment....

Ingrid delayed going for breast screening and found it difficult to re-arrange her appointment....

SHOW TEXT VERSION
PRINT TRANSCRIPT

It happened out the blue literally. I mean the year before I had had my invitation to go for the regular x-ray in [the screening unit]. But work commitments had meant that I couldn’t get there. And it was actually, to re-arrange that appointment was ridiculously complex. So although I contacted them and said I couldn’t do it, it was very, very difficult to re-arrange that appointment. And I never got around to doing it because it had to come from me. And so I hadn’t done it.

Anyway, I just got on with my life and it was then, as I was saying earlier, when we came back from holiday and I was having a shower in the morning to go to a doctor’s appointment that day, just before going into London. And I was just taking my hand over the breast to wash and I felt something. And I thought, “Hang on, that’s not normal.” And then started to feel for it. And I’m amazed that, considering that we’d been on a holiday where we had been, I had been showering two to three times a day, drying myself after swimming on a regular basis, that I hadn’t noticed it any earlier. And considering the size, as it turned out, it is astonishing that I found it that morning.

Before I went into London, I rang my GP. And they reacted very quickly. So basically I had my London appointment in the morning and saw my GP that afternoon, which I was very impressed by and very pleased with. And I could tell from the expression on his face that this was very, very serious. And he asked if I had, well he knew I had private insurance and I just said, “I want the best and quickest treatment I can possibly have.” And he thought for two seconds and decided to go to the consultant that he put me in touch with. And I saw that consultant the Saturday, that was Monday or Tuesday? It was Monday. So that was the Monday, so I saw my GP on the Monday, saw the consultant on the Saturday morning and had the surgery on the Monday. It was as quick as that.

 

Ingrid had a very serious complication during chemotherapy. She wanted to maintain her dignity...

Ingrid had a very serious complication during chemotherapy. She wanted to maintain her dignity...

SHOW TEXT VERSION
PRINT TRANSCRIPT

I’d had a bi-lateral PE [pulmonary embolism] as a result of the first chemotherapy. And I had an emergency admission to a local hospital and the treatment there, the emergency services were brilliant. What I experienced in the hospital was abominable, stunning and just absolutely ridiculous.

And just the very fact that there I was fighting for my life, could barely breathe, so saying, ‘You can call me Doctor Eyers, you can call me Ingrid Eyers, you can call me Mrs Eyers.” And usually when somebody says, “Mrs Eyers” I sort of look round for my mother-in-law, so I don’t necessarily realise that word, Mrs Eyers, which is why I don’t mention that as the first thing. But I was really fighting for my life. And then the final stage was, “But you cannot call me darling or dear or even sweetie.” I mean that was what had really got at me. I was being treated,

Was this by nurses?

This was by the nursing staff, yes. That really made me cross even though I think what I was trying to do was maintain dignity. Yes, I was fighting for my life, and I really was fighting for my life. I mean that really, it’s amazing that I’m still here, I know that. But then I was also fighting for my dignity in that whole process. And I was not given any dignity in that hospital at that time. If you consider that the diarrhoea that you experience when you’re going through chemotherapy and you’ve barely got the energy to get yourself to and from the toilet; to keep yourself clean at that time. I had to ask for the facilities to wash my hands. I could not get to the washbasin and wash my hands myself.

And the variation of assistance I was offered so that I could wash my hands was stunning. It varied from somebody holding a bowl of water up like that, to somebody actually saying, “I think I’ll bring you a box of disinfectant wipes and then you can wipe your hands properly afterwards, every time, independently without having to ask.” So that was the range of options I was given. But I had to ask every time. At no time was it considered that I might need or want to wash my hands.

 

Ingrid has had joint pain, nausea and hot flushes since taking Arimidex, though the nausea has...

Ingrid has had joint pain, nausea and hot flushes since taking Arimidex, though the nausea has...

SHOW TEXT VERSION
PRINT TRANSCRIPT

I was on Arimidex at the, do you know there’s some times I have to say that in hindsight now are a blur. I can’t tell you exactly when I started Arimidex, but if I remember correctly it will have been after the first, after the last chemo. I think that’s when I started taking the Arimidex. The Arimidex itself, right my fingers, finger joints, my toes, the morning of the, there’s an underlying nausea. And the joint pain gets better during the day, but first thing in the morning my arms just feel as if I’m wearing leather gauntlets. And the joints are tired and heavy. That I have definitely had. The nausea, the burning from the inside, it’s almost as if within a day you experience early pregnancy and menopause in one day. Thankfully not at the same time.

Even now two years, about, not two years on but about eighteen months or so on, you have the side effects?

It’s slightly, the nausea has gone, but only recently. Now that you mention it, no the nausea was still there at Christmas and early January. But it’s sort of within the last six weeks or so that there has definitely been a change and that includes the nausea. The hot, the burning is no longer quite such a sense of burning from the inside out. It is more now like a hot flush that I get. Yeah, I seem to, regular as clockwork around 11 at night in the evening, I sort of think, “I want to go to bed, but I’d better not, I’m just far too hot at the moment.” There is that.  And I wake up in the morning sometimes and I just feel hot and sticky. So the hot flushes, but they have changed.

And how long do you have to take the Arimidex?

I’ve got another three years to go.

 

Ingrid had severe diarrhoea and felt exhausted. Her experience was complicated by other health...

Ingrid had severe diarrhoea and felt exhausted. Her experience was complicated by other health...

SHOW TEXT VERSION
PRINT TRANSCRIPT

The chemotherapy experience itself for me was bad. I’m sure it’s not good for anybody. But it really was just stunning. I knew it was going to be shitty; there is no other word to use. I don’t think I realised how literally shitty it was going to be, how awful I would feel. The nausea was amongst the worst things. The medication I was given for the first bout to help cope with the nausea did zilch for me. What I had got and what did help, something simple and straightforward, are these ginger sweets that we brought back from holiday with us. And they only, they blow your head off with the amount of ginger that’s in them, but that is what helped me most initially until I was given stronger drugs.

But it wasn’t until the last session that, it was almost the last session that they found a good solution and found something that helped me. And it was at the time of the summer Olympics, and my mother would say, “If they had sleeping as a discipline in the Olympics, you’d win a gold medal for Britain.” I slept a great deal. That was part of my survival. I was almost, to some extent, like a teenager. If you got a response it would be a grunt at some stages. So that was the way I felt and experienced.

In addition to the cancer I also had mobility problems. What had happened, the appointment I had had in London, when I first found the lump, was aiming towards having a hip replacement. And my knees aren’t too brilliant either. I’d already had one hip replacement. So it was, my mobility was not brilliant either, and so that added to the complexities of it all.

I was hoping to sort of have the odd fun session going out buying hats or something like that, but actually never ever had the energy. It just didn’t happen.

I had friends say, “Oh I’ll come hat shopping with you.” But no, never ever had the energy. And I have to say that just going to the bathroom and keeping myself clean was the most I could manage. Just having a shower was exhausting.

And was your husband here at the time? Could you eat anything? Or were you, couldn’t keep anything down? Or you had no appetite?


I had...

Or things tasted…?

Oh the taste of food was, that was actually quite complicated. My husband would say, “Right, what would you like to eat? What do you want to eat? And when I’m shopping what would you like me to get?” And by the time he’d shopped and brought it back, I didn’t want it anymore. So against our usual household management, he ended up throwing a lot of food away. Because there was, it was just totally unpredictable. He would shop and have things in the house and I would just go, “Ergh.” I even reached the stage where I wouldn’t even drink water because the water didn’t taste right any more. And things like that, it was, food was a great problem and totally unpredictable as to what I would like.

 

Ingrid had a lot of support from someone she paid to help with household chores when she was...

Ingrid had a lot of support from someone she paid to help with household chores when she was...

SHOW TEXT VERSION
PRINT TRANSCRIPT

Something else that’s just dawned on me, you know, running your household. But there I was very, very lucky, very lucky indeed. If I hadn’t had Jane [domestic help], who has kept this household ticking over for quite a while now, but especially over the last two years. And she was also at the other of the phone if I needed her at any time. And did extras, and she would come in if I needed meals during the, and again because she’s somebody we pay, you don’t feel quite the same way as if it was friends. It’s, yes she is also a friend but anything that she, you don’t have this feeling well of reciprocity, the issue of reciprocity, however can I make up for what they have done?

And so it was easier to go for actually, to somebody who was paid to help than to have friends and family where it really is my goodness, it is stressful for them to see and cope with, how can you ever every repay? And there to have Jane [domestic help] who we paid to help, and she was happy to help and was absolutely wonderful, in her taking over the running of the household, keeping the household tidy, doing all the washing. All those sorts of things.

 

Telling other people you have cancer can be difficult. Ingrid found it helpful to tell a few...

Telling other people you have cancer can be difficult. Ingrid found it helpful to tell a few...

SHOW TEXT VERSION
PRINT TRANSCRIPT

I think one of the toughest things actually is telling people you’ve got cancer at that stage. Because everybody is stunned and shocked when you do tell them. And there is no easy way of telling anybody.

And what I did was I set up a sort of system to some extent in that my husband would do the family, and [friend’s name] did colleagues and friends at that side and passed on. And it was [colleagues’ names], they took on, between the two of them, they passed on the information to other people who needed to know. And then it was, the phone calls that my, oh yes that was the other thing, telling your parents is almost the worst thing. And coping with my mother. There my brother was brilliant.

So it was my brother who took care of my mother, and helping her deal with it. And my other brother dealt with my father. So that worked. So that [husband’s name] wasn’t having to tell people repeatedly how I was, that field system worked as well at the key times it was, [my husband] would contact my brothers, and [my colleagues], and that was it. So that, at every stage, when something needed to be passed on, those were the people he contacted, and that was it. It made it easier for him. That was a system that definitely worked, doing it that way, having sort of key contact people which then took pressure off my husband as well.

Yes and actually I didn’t have too many visitors, didn’t want too many visitors, because, as I just said, everybody means well but you actually having visitors is stressful. And if you have visitors where, you know, you don’t have to put on a show, that’s fine. And those are only those who are really close to you where you know that you don’t have to put on a show, or pull yourself together. And those people are few and far between. So if you keep it to that, if it’s sometimes just opening your eyes and seeing that your husband’s in the room with you, or knowing that he’s in the house with you, that’s fine.

 

Ingrid found it reassuring to know that it can take two or three years for women to recover from...

Ingrid found it reassuring to know that it can take two or three years for women to recover from...

SHOW TEXT VERSION
PRINT TRANSCRIPT

I had the breast surgery in January, and in the following year in March I had the hip replacement. And so you, you sort of, when you’re feeling tired you don’t know; is it the combination, and it probably is the combination of the breast cancer, the hip replacement, age.

Right what can I deal with first? I can’t do anything about my age, that’s a fact of life, get on with it. But what can I do to cope with my mobility and energy levels relating to the breast cancer? And there I know that, in both cases, it is getting better. But it’s again this bit of, “How long is a piece of string?” It’s taking much, much longer than I expected. I had set myself goals; by such and such a time I should be able to do such and such. Well I kept having to move the goalposts and I still am.

To be told, “Yes I’ve heard from a lot of women that this can take two to three years, but it does get better.” Was reassuring, but it also made me cross. If it is known, if it is a fact that it can take two to three years, then I think that needs to be taken into consideration. Employers need to know that. It has an impact on your ability to work. And it is the reality, and I think that needs to be taken into consideration and needs to be looked into further.

 

Ingrid recommends having a project to focus on and plan aside from the cancer. She and her...

Ingrid recommends having a project to focus on and plan aside from the cancer. She and her...

SHOW TEXT VERSION
PRINT TRANSCRIPT

As part of your survival I would recommend a joint project that is independent of your cancer.

I suppose just thinking about how useful it actually was, having this farmhouse to plan and organise, and it was a joint project with my husband that, it was something that we did together and we talked together. So it was something for the future. So maybe that is also something that is useful. Another alternative for someone would be to plan a holiday or to plan something that you’re going to do together once this crap is over and done with. It’s planning that, and doing it together. And to be talking about something totally different and sort of to just say, “Ooh I’ve come up with this idea for the kitchen. Could we? Should we?” That sort of thing. Or, “Ooh furniture for the living room. Are we going to do it this way or that way? And what are we going to do.” And, “Ooh I’ve come up with an idea, it would be nice to do this, that and the other.” That sort of thing.

And sort of, “What colour curtains?” And it is just totally, has nothing to do with cancer but it has to do with the future. It has to do with joint future. And yes I suppose underlying, you know, when I was undergoing the treatment ‘would I actually experience this?’ And then thinking, “Oh yes I will.”

 

Ingrid was happy with her reconstruction but has had discomfort in her shoulder since having...

Ingrid was happy with her reconstruction but has had discomfort in her shoulder since having...

SHOW TEXT VERSION
PRINT TRANSCRIPT

I have to say that the surgery was fine. And for the first weeks after the surgery and during the chemotherapy, I had no problems with my shoulder. But post radiotherapy I do. And my shoulder is uncomfortable and there’s one certain point that really hurts. And I have mentioned it every time I’ve gone to doctors here in the UK. But nobody’s picked up on it or followed through with it in any shape or form. So I’ve taken control and I go to a physiotherapist in Germany who does, you know, is qualified and trained to do lymph drainage. And I have to say, although I’ve only had a few, it is making a huge difference. And I was mentioning it to a friend, a colleague who is a cancer nurse. And I said, “I’m having lymph drainage treatment in Germany whenever I can get over there.” And she said, she immediately said, “Oh have you got lymphodoema?” I said, “No. No I haven’t.”

But just having the drainage has made a huge difference. And I’m sure it’s not purely coincidental. My fingers are getting better, definitely on the right hand. My shoulder is more comfortable, I’m not saying it’s perfect, I don’t think it ever will be. I know there’s a certain level of discomfort that I’ve got to learn to live with, but it is definitely, the lymph drainage is, having that is improving. I could only start doing that when I, because I knew I’d be in Germany quite regularly these last few months, and that is making a difference. And I will continue in that.

Previous Page
Next Page