Lesley & David ' Interview 05

Age at interview: 66

Brief Outline: David was diagnosed with multiple myeloma, a rare form of cancer, 7 years ago and is currently undergoing further treatment. Lesley finds caring very emotionally draining. She sees her role as helping David to control his disease.

Background: Lesley has been married to David for 19 years. She has 2 adult children and 2 adult step-children. Lesley is a self-employed teacher. Ethnic background' White British.

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David was diagnosed with multiple myeloma just as he and Lesley were in the process of selling their house and moving to a new house. David had gone to the doctors by himself so Lesley found out about the diagnosis second hand. Neither of them understood what multiple myeloma was, so they went on to the internet to find information about it. David’s myeloma was known as ‘smouldering’ and he was given between 2 and 3 years to live. The diagnosis caused them both a lot of angst, many tears and concerns about an unknown future. David was not offered any treatments for 6 weeks after his diagnosis, until all his test results were known. Lesley found it very hard to deal with the wait and the unknown. 

David suffered from anaemia which made him very tired but they carried on as normal for the next four or five years, with David having regular visits to the hospital and occasional treatments for his bones and for his anaemia. The anaemia then became worse and he started having blood transfusions. The time between transfusions became less and less and it became apparent that other treatments would be necessary. David was put onto Velcade, which was effective, but the violent side effects were disturbing and David had to attend A & E. He was admitted to hospital and Lesley found herself getting very frustrated and angry in the hospital as she tried to get treatment for David. Lesley had no trust in the hospital staff, so stayed with David in the hospital looking after him in every way she could.

David lost weight in hospital, so after 3 weeks Lesley took him home to care for him at home. Unfortunately David fell out of bed at home and Lesley had to call the doctor. David was admitted to the local cottage hospital, where he started to regain his strength and was able to look after himself again.

The next two and half years were relatively myeloma free but then it returned and he is now undergoing further treatments. He has the option of going onto a trial with a new drug in the spring which he will probably take up.

Since David’s illness Lesley has become very active on various committees, trying to make a difference for David and others with rare cancers. Lesley looks up any information she can to find out how to help David, because multiple myeloma is a rare cancer with no set treatment pathway. Lesley is also an active member of her local community and finds that participating in committees is enjoyable and it is refreshing to do something away from home. It is also something she can share with David when she returns home. Lesley and David are both members of 2 local choirs and find singing together very enjoyable. Music is a great consolation to them both.

Lesley has found the Myeloma UK Support Group very useful and has phoned them when she has needed information and often feels unsupported in her role. Lesley and David are very aware that David’s cancer makes him vulnerable to other diseases and recently they have discussed David’s wishes for his funeral. They are currently planning to move house again, to a smaller property with less upkeep for David to manage. The decision to move has been difficult as they had originally planned to stay in their current home for ever.

They make time to do things together and to do the things David has always wanted to do. They both love travelling and are planning trips to places David wants to visit. They are also planning a hot air balloon ride and Lesley is going to jump out of an aeroplane to raise money for the Myeloma support group.
 

Lesley helps her husband to make treatment decisions; she sources information for them to discuss then steps back to allow him to decide.

So it’s a very fine balancing act and you try to make a decision, we make the decisions together. And I think a carer’s tripwire isn’t, is not to over influence in making that decision. You want to say, “Yes, let’s go for it.” But it’s not you who’s going for it. It’s your partner who’s going for it and they’re the ones who have are going to have to suffer the pain or, in David’s case, the neuropathy or whatever, the neuropathic pain that he’s in. And it’s easy to say, “Yes, I think we should go for it.” But not so easy then to have to stand whatever the outcome is. So it’s, you can be gung ho but it’s not a good idea. We so far, haven’t actually had that. I’m not good at stepping back but I have stepped back from decisions. I’m bad at that. I know I am and what I try to do is get all the information I can about the next steps and then lay them before David and then we talk it through. And I will go with whatever he decides to do because it’s him who’s going to have to suffer the consequences.  

Lesley's husband David was diagnosed with a rare cancer and the doctors could not tell them much about what to expect, which Lesley found very difficult to cope with.

We weren’t offered any treatment options because nobody quite knew, until all the tests were done, what that was going to bring. So it was about a month and a half of puzzlement and, and everything was unclear and I’m a very, I have to know person, so that I can deal. If I don’t know I freak and I didn’t know. So there was quite a bit of freaking on my part going on and, at the same time, trying to realise that I wasn’t helping the situation, David or anything else.

It was very difficult because as a disease itself, if it had been a solid tumour somewhere you can visualise excising it and dealing with it and, in apostrophes, curing it but to be told that what David had was treatable but not curable you you’ve got this long distant future in front of you, which is grossly unknown, and I don’t deal well with the unknown. I deal with knowing what I’m doing, where I’m going. I don’t deal well if things are unknown and I found me a bit crumbly really because it wasn’t obvious what was going to happen or how we were going to deal with what was going to happen, both medically and domestically, how that was going to pan out either. And, particularly, with the state we found ourselves in, in the house as well, which hadn’t even been started let alone finished. All of that just fell into a big hole and I couldn’t work out what was going to happen first or how it was going to happen and that was confusing in the extreme.

I think that was probably, even more confounded by the fact that the medical experts, they didn’t know either. So they couldn’t give you any reassurance that if they did that, then that would happen and if they did something else, then that would happen, because they didn’t know either. So that was even more, for me, that was even more confusing and I’m not very patient. I’m not a patient patient. David’s very patient but I’m not a patient patient. And I was getting impatient with them, which is why I spent such a long time on line trying to fathom my way through it myself. So that was immediately, for me, a huge problem because I couldn’t, not being in control, I couldn’t make it better. I couldn’t get anybody else to say that they were going to make it better either and that was very hard, very, very hard indeed all round.
 

Lesley and her husband David used the internet to find out what his diagnosis of multiple myeloma might mean.

Yes, in two thousand and three, February, we had actually, sold our other house and were about to move in to this house when he was diagnosed with multiple myeloma and he went on his own to see the doctor. So I found out about it second hand really. I didn’t understand it and neither did he, so we went on the web together to look up what it was and what it entailed and what needed to happen. And, in the end, we really had to go to the American site to find out about it properly because the support group wasn’t actually up and running as efficiently as it is now eight years later. And we discovered that luckily, I think, he was what is known as smouldering so there was a lot of angst. There was quite a few tears. There was a total unknown blank future because we were in a new house that needed loads of work doing to it. It was a tumble down shell really and we were, what were we facing? We didn’t know what we were facing. I didn’t know what I was facing. I didn’t know what the prognosis was. 

Lesley's husband was not helped to eat in hospital and lost a lot of weight. She got him home and then into the cottage hospital where the care was much better.

He was there for nearly three weeks, by which time he’d lost four stone in weight, because the food went to the end of the bed and if he didn’t eat it, it was taken away and nobody asked him why he wasn’t eating or drinking. But as he had permanent diarrhoea he couldn’t do either. He was on a drip a lot of the time, he was having platelet infusions and anti-biotic infusions and quite honestly, the even the consultant said he didn’t know what to do. He didn’t know what to do. He didn’t know how to cope with where he was and what he was, symptoms he was giving off.

So, eventually, after talking to the consultant, I suggested that he came home because he was getting no further then. He was losing weight. The weight was just falling off his, although his myeloma had ostensibly, according to his blood test, gone. We, we know that it’s treatable but not curable so, obviously, it was hiding somewhere and we later discovered it hides in the bone marrow and it’s very difficult to detect. So you can’t detect with a blood, just a blood test, which is what he has having. He really should have had a bone marrow aspirate but he didn’t get one of them.

So he came home. He’d only been home a few days and he actually, fell out of bed and calling in the doctor, he suggested he went back to hospital, which David refused, point blank, would not go back to hospital under any circumstances at all. Our own GP came in the next day and said, “Will you go to the cottage hospital?” Because we have a local cottage hospital, which the people round here fought to keep, and he said he would and in ten days they’d put nearly two stone back on him and looked after him the way, I felt, he should have been looked after all, all along, and got him back on his feet and able to cope with himself and what he needed to do, dress himself, feed himself, look after himself.
 

The district nurse nagged her to make sure she was taking time off and was very caring.

The one person I have missed out of David’s equation, who during the time he was in hospital and then when he came home has been absolutely vital, is our district nurse. She was as, just an amazing support. She was a rock really and she did help and she was the one who would nag me to say, “Have you had any time off this week?” And say, you know, “How’s it going?” With me and she would she would make sure he was comfortable and she would come and talk to me and so the district nurses are, I’ve found them extremely good.  

Lesley thinks that professionals should respect people if they look up information and should treat the carer and patient as part of the team.

So and if your patient is at all erudite and has obviously done some homework, accept that as being, not trying to be interfere with what you’re doing, but as trying to inform themselves as to where we’re going and what we’re doing and why. Don’t be afraid of an expert patient or an expert carer. Take them on board and work as a team. You’re very good, they’re all very good at working in multi-disciplinary teams. It’d be nice if they thought that patients and carers were part of that team.  

When Lesley's husband was in hospital she felt the nurses neglected him, so she would clean him, change his clothes and feed him, just as she would at home.

I found his treatment absolutely appalling, totally and utterly appalling. The lack of care was obvious and scary, for me, because I didn’t trust them. I didn’t trust them for me not to be there, so I was there a lot of the time, changing his bed, changing his pyjamas and, generally, looking after him. And when challenged, which I was by nurses on the ward, “Why are you doing that?” And it was just quite simple, because nobody else is doing it and he’s my husband. I love him and I want him to try and get out of here because I actually, just didn’t trust them at all.

But you’re having to make sure that he’s clean and dry and warm and looked after and fed and, and that’s every, ‘mum/wife’s job’ and it didn’t seem any different to me, just because he happened to be in hospital and everybody else was studiously ignoring him that I shouldn’t chip in and make sure that he was okay. It wasn’t appreciated in the hospital. They didn’t like it but it didn’t bother me that they didn’t like it. It wasn’t my concern, that was their problem, and I did it.
 

Lesley advises professionals not to be afraid to admit that they are unsure or do not know the answer.

One of the other uses this site is put to, is of course in the training of the next generation of medical personnel. So if you were going to address them what would you say they would need to take from your journey?

Don’t be afraid of saying you don’t know. The patient would rather hear that you don’t know or you’re not sure but that you’re going to find a man who does or can and the patient would rather have that than a whole load of flannel that doesn’t get them anywhere.
 

Caring for somebody around the clock and having to watch them suffer pain without being able to help is emotionally draining.

David has a very big family and I am very lucky in that one of his sisters plays centre of the roundabout and I just give her the information and she makes sure that everybody else gets the information and she always asks how I am, which is also good. The carer can be the person in the dark, in the shadows, bumbling along at the side of the patient but for me, the carer’s role has always been the one who takes the information and then takes it away and does something with it. I have to be active. I have to be proactive. I have to be in control of my bit and helping David to be in control of his bit as well. So it’s a double edged sword really and can be very fraught. It can be, it’s extraordinarily, emotionally, draining. I found myself, when I went to the cancer conference last week and it was held in Liverpool, and those of you with a keen ear will have heard that my accent probably comes through occasionally. I am a Liverpudlian and I just hadn’t realised how strong an umbilical cord there is between me and that city until I got there and burst into tears. There you go. So it can be very, very, very emotional, draining, in fact, of your all your emotions, your strength. You can’t keep going. You’ve got to have a break sometime and when they are as well as David is with his cancer, I think the term, living with cancer, is extraordinarily appropriate but you don’t any, the carer doesn’t get any support because he looks, seems, acts, as though he’s okay. And so, therefore, what caring are you doing? You know, well, I consider myself to be a bit of a pit prop, holding him up, but sometimes I need somebody propping me up as well and that doesn’t very often happen.

 

So it can be quite difficult and living with somebody twenty four seven, can be fraught with shall we say, hiccups along the way [laughs]. You really want to scream sometimes, “Why don’t you?” Or, “Why can’t you?” And you can’t shout at them because they’re ill aren’t they. And you’re not ill, apparently. So that can be difficult too but it’s rewarding. I find it rewarding.

 

It’s very difficult watching somebody being in pain and neuropathic pain is inordinately difficult to deal with. And there are no painkillers that will deal with neuropathy, none at all. There are ones that you try but they don’t deal with it and so watching somebody being in pain permanently, is actually, extraordinarily difficult and you know you can’t do anything about it. It’s no it’s no good saying, “Oh, I’ll go in the kitchen, get you another pill.” Because there isn’t another pill to get. So it can be very, very, very hard indeed.

 

It's not a sin to stop caring for ten seconds. Taking a ride in the car usually helps Lesley to put feelings of frustration and anger into perspective.

So, you’re having to have enough confidence for two people. I’ve already got enough for one but I had to share what I had.

 

Did it get a bit thin sometimes?

 

Very thin [laughs]. Yes, very thin, yeah, very difficult sometimes. I don’t do despair, easily. I’m quite I am the glass half full. David’s the glass half empty. I’m the glass half full so we make a good, but when he when you’re just about to delve in the glass half empty as well it really is bad news. It’s the end of the garden and scream, take the dog for a walk or go and talk to the chickens, anything other than stay in the four walls and go down.

 

Is there anything you want to add?

 

Nothing, except that it’s not a sin to stop caring for ten seconds.

 

Can you say a bit more about that please?

 

Yeah, if you’re frustrated, unhappy, angry, at screaming point, that’s not wrong. It’s natural and it’s part of the whole deal. So if you, because of a situation, an argument, and they will happen, nobody’s perfect, the arguments will still happen, it isn’t a wrong thing to switch it off and go and scream at the bottom of the garden or go and feed the hens or go and sit somewhere quietly on yourself. Or even just to go, as I have done, go into the bathroom, shut the door and just shout, “Leave me alone for a wee while.” It’s not a sin. It feels a sin at the time, and at the time you feel very, very guilty for doing it because you’re not ill, they are.

 

But it, that’s not a wrong thing to do. It’s very often a safety valve that has to be done. I have slammed out, got in the car and driven off. I even got to the top of the hill and looked at the scenery and thought, “Isn’t that beautiful? I can go home now.” But sometimes you just have to let the steam out because you do keep it in. You do behave slightly differently knowing that someone has a limited time. You do behave differently and if it’s not in your nature to behave that way then sometimes you just have to let go. And I have done. And, at the time, I felt guilty. Subsequently, I’ve been attending a number of carers’ sessions, with support group. I don’t feel guilty anymore. So that’s another thing for the potential carer really.

 

Don’t feel guilty if you’re feeling cross, angry or want to strangle them [laughs]. It’s normal [laughs]. It’s what happens in every marriage and every partnership, occasionally you want to strangle them and it’s no different if they’re ill. In fact it’s more frustrating if they’re ill because you’re trying to bottle it and that’s not a good thing for you. So you need to let the top off that bottle and I have a phrase or saying, which my family are totally fed up with, which is that God gave me legs to get to my car. This is only when I only say it when I’m having a green lecture from somebody else but to jump in the car and drive off and go and look at a pretty scene, some pretty scenery, is actually, quite a good thing. Puts everything back into perspective and into its box again.

 

So that would be your main coping strategy, in the moment.

 

In the moment, yes. To get out of it really, to get away from it, to step away from whatever confrontation or conflict or whatever is going on is, it also gives the patient time to think as well, that maybe they have overstepped the line that you maybe do need a bit of space and then when it all comes back together again, usually, it’s okay. With me it’s ok

Lesley and David recognise that their time together is limited so they are currently doing all the things David wants to do.

And whether we like it or not, we both know he has a limited future. We both know that. We both know that he’s going to run out of drugs and you can’t die from having multiple myeloma but you can catch something that you can’t throw off because it has eaten your immune system and you don’t have the ability to get rid of it. And we know that, at some stage, that is going to happen and we don’t know how long that is so we like to spend time together, which is, I guess, why people get together in the first place. So the fact that the house is spick and span and I’ve been out and done something frees us up then to go somewhere and we load the two dogs in the car and off we go. And that’s lovely, when we’re together doing that and I’ve had to, probably, educate myself to that more than David has because David’s in the four walls, whereas I’m out and about and his need to get out and about has to be fulfilled because we don’t know how long that’s going to be.

 

So do you think there’s, there’s more of a focus, really, on time?

 

Yes, there is. There’s more of a focus in fulfilling things that you have always wanted to do and have never had time to do and now we make time to do them together and if somebody says, “Actually, we’re thinking of going to Egypt next year. Would you like to come?” The answer is, “Yes.” And we will move heaven and three earths to make sure that that happens because David’s always wanted to go to Egypt and our friends suggested we should go together. So we will go and previously, we’d probably have said, “Oh, well. We’ll think about it.” There’s none of that now. It is, “Yes, we will do it and we will make it happen.”