Lesley - Interview 11

Age at interview: 47

Age at diagnosis: 45

Brief Outline:

Lesley was diagnosed with pancreatic cancer in December 2008. She had a Whipple's operation and then chemotherapy. In September 2009, a CT scan showed that it had spread to her liver. Lesley still leads an active life. She takes morphine for her pain.

Background:

Lesley is a housewife. She is married and has 3 children. Ethnic background/Nationality: White British.

More about me...

In October 2008 Lesley had pain in her back and just below her breast area. She also noticed that her urine looked a bit like undiluted orange juice, and her stools looked pale. Lesley was also losing weight. She thought she might have a urinary infection so she went to see her GP, who did some blood tests and sent her for a CT scan. The scan revealed a blocked bile duct. Lesley felt worse and looked jaundiced. She went into hospital, where the doctor inserted a stent through an endoscope, to keep the bile duct open, so that bile could drain from the liver.

In October 2008 Lesley had pain in her back and just below her breast area. She also noticed that her pee looked a bit like undiluted orange juice, and her poo looked pale. Lesley was also losing weight. She thought she might have a urine infection, so she went to see her GP who did some blood tests and sent her for a CT scan. The scan revealed a blocked bile duct. Lesley felt worse and looked jaundiced. She went into hospital, where the doctor put in a stent through an endoscope, to keep the bile duct open, so that bile could drain from the liver.

Lesley then had an MRI scan. She went to another hospital to get the results and only realised that she had cancer when she was introduced to a Macmillan nurse. In January 2009 Lesley had keyhole surgery so that the surgeon could look inside her abdomen (tummy) to see if the cancer had spread. The cancer was only in the pancreas so on 22nd January 2009 Lesley had a Whipple’s operation.

The operation took about nine hours. Lesley had an epidural so when she woke up, she didn’t feel any pain. The nurses and physiotherapists cared for her well and she was soon out of bed. She started to eat and drink again after about five days. Lesley stayed in hospital about a week and a half and then went home. 

The district nurse called at her house to change the dressing on the incision. Her recovery went well and she started chemotherapy. She had gemcitabine through a drip and tablets of capecitabine. This was part of the ESPAC 4 trial. Lesley was sick the first time she had chemotherapy but had some medicines that stopped any serious side effects after that. She had the chemotherapy just as a precaution, because there was no evidence of any spread of the disease.

Lesley went back to work after about six months. Soon afterwards, in September 2009, she had another CT scan. This scan showed that there were some metastases (secondary tumours) in her liver. The doctor told Lesley that there was nothing more they could do to cure the cancer. This was a big shock for Lesley and she felt devastated. She found it very hard to tell her family about it. It was especially difficult to tell her partner and the children the sad news.

Since then, the family has given Lesley great support. She has a swollen liver, which is painful, so she takes morphine tablets. She has a palliative care nurse, who calls every week and who helps when necessary. The nurse helps Lesley get the medicines she needs. She also answers questions. Lesley has told the nurse that when she becomes really ill she does not want to stay at home. She would prefer to go to a hospice or to the local hospital. Lesley is making memory boxes for her children. 

After Lesley received the bad news about her terminal illness her partner asked her to get married. They had a happy wedding day. They are now planning a short holiday. 

Now Lesley takes painkillers and Creon tablets to help with her digestion. She also takes anti-inflammatory tablets because of her swollen liver. 

We spoke to Lesley in 2009

 

 

Lesley had been told she had a lump. She didn't realise she had cancer until she was introduced to a Macmillan nurse.

So what did they say was the matter when you were in hospital, when you got to hospital?

 

They just found a mass.

 

That’s what they said?

 

Yes. Well they could see this blockage, but didn’t know properly what it was.

 

So I had an MRI I think it was the following week.

 

And I had to wait for the results for them, and I was told I would get the results at another hospital, which was a specialist hospital. So 22nd December 2008, I went along just expecting to be told, “Oh, it’s a lump. We’ll just cut it out.” But I didn’t realise it was cancer until I was actually introduced to a MacMillan nurse. 

 

I wasn’t told it was cancer. 

 

My husband even went to work; we couldn’t afford to have him off work. You know, me, really. Especially with it being near Christmas. My daughter was with me, she’d just broken up from school, you know, my youngest daughter. And my brother-in-law because he was off with disability anyway. So he agreed to take me with it being so far away. And it just sort of went over my head and I thought, “Oh I’ve got cancer. It’s a cancerous lump.” Because you don’t get introduced to a Macmillan nurse unless you’ve got cancer. But the doctor didn’t actually say, “You’ve got cancer.”

 

Lesley found telling people 'awful'. Her parents 'fell apart'. Her partner, who was devastated, insisted that they get married.

I was starting to come round and getting used to the idea. It wasn’t getting easier.

 

No.

 

But it was sort of settling in. But telling people was awful.

 

It sounds like you’re more caring about them, than you were worrying about yourself?

 

I suppose in a way I have. But I kept thinking well, at least this way I can say goodbye. You know I can make all, make all my goodbyes you know to everybody. Instead of getting hit by a bus and everybody’s going, “Who, who’s dead?” You know, “That was a shock.” You know? And I’ve got a chance to say goodbye to people in a way. And if I keep that in my head, it’s easier.

 

How long ago was, how long ago was all that? When were you [diagnosed]?

 

This was September.

 

Last year?

 

At the end of September last year yeah. When I got the result.

 

And then when did you tell your partner and your children.

 

Oh, I told, I couldn’t hang on any longer. So because it was the Tuesday that I’d got, sorry the Wednesday when I had got the results, I think, yes. And by Friday I couldn’t hang on any longer because we got into an argument over something. And he said “What’s wrong with you? What’s wrong with you?” And I said, “I can’t. Oh I’ve got to tell you,” and he said, “What?” At the time we were making the bed. I can remember I was making the bed. And he, he shouted at me, “What the hell is wrong with you? Come on what is it?” I said, “I can’t tell you.” He said, “You, what? What can’t you tell me?” I said, “Look,” I said, “You’ve got to make me a promise.” He said, “What, what promise?” I said, “Make me a promise now. You go and pick them results up next Wednesday.” He said, “What are you on about?” I said, “You’re going to pick them results up next Wednesday aren’t you?” He said, “Well yeah, why?” I said, “Do you promise you are going to go and get them results next Wednesday?”

 

That’s by himself?

 

Yes, for his prostate results. And he said, “Why, what’s up, what’s up?” He said, “Please tell me.” And that’s why I had to tell him. I’d seen my Mum fall apart, I’d seen my Dad fall apart – but he just went completely off his head.

 

That must’ve been awful for you?

 

He kept saying, because we were together years and years ago, and then we split up for a time. And for all the time that we were apart he said he used to sleep with an old jumper of mine.

 

So soppy he is.

 

You know the big tough guy, but he’s not. And he just completely fell apart.

 

Did you have anyone to help you? Anyone you could turn to?

 

No. And then he says, “But we’re not even married.” I said, “I know we’re not married.” He said, “Right we’ll get married.” Cos he, “Yeah, when we’ve got some money.” He said, “No, we’re going to have to get married, we have to get married”. I said, “Well yeah. We will, we will, we’ll get married.” 

 

When Lesley told her 19-year-old son and her 11-year-old daughter that she was going to die they appeared to cope with the situation remarkably well.

And so because I’d told him I could finally tell my son, who was 19. So I got hold of him, and sat him down. I’d just made the bed and I sat him down on the bed and I told him. And he just sort of sat there and went, “Right okay.” I said, “Are you alright?” He went, “Yeah, fine. Can I go now?” I went, “Yeah, okay.” And he went in his bedroom. So he probably went off for a, you know a little cry really. But I think one of the worst was telling the youngest one.

 

Because she was, she was just coming up for 12. And, I was, “Oh this is going to be hard.”

 

Well my eldest daughter had, when I’d gone down the couple of days before, she said, “Right I’m coming down.” I said, “Okay.” She said, “I’m coming up for the weekend,” she said, “I’m booking some time off.” She said, “I’ll just tell them I’m not well, or if I can’t get any holidays.” I said, “No,” I said, “If…” She said, “No, no I want to come up, I’ll be up this weekend.” Because she’d just passed her driving test so she was made up. “No I’ll be there.” I said, “Okay.” 

 

So she was there with me. In fact we were sat here. And I got them sat here, my eldest daughter sat at the end. And then I had to tell her.

 

That must’ve been awful?

 

Never again. It was really, really bad. I don’t, she was a lot better than my, than my fella.

 

She didn’t sort of fall apart. 

 

Did the Macmillan nurse tell you where you could get any support for the children?

 

Well they gave me lots of leaflets and information on how to tell people, especially children. There’s even websites that children can go on, and it’s called Riprap or something.

 

They can go on there and put on their thoughts and how they’re feeling. Things like that. And, so I thought, right, well I’ll get her to look at that and things. She’s sort of sat here and I’ve got my arm around her, my other daughter’s got her arm round her, arm there, and she was fine, she was, she was really good with it. But I never want to do that again, tell a 12 year old. You know you’re going to pop your clogs like.

 

And has she used the website?

 

Yeah. Yeah she’s been on it a couple of times. But she’s like me, she just gets on with it now. I mean she even says things, like she’s got first dibs on this skirt I’ve got. 

 

First what?

 

First dibs. She’s got the pick of this dress, this, she wants this skirt, when I go she’s, “Can I have that?”

 

Oh dear.

 

You know. It’s just the way we, we do it. She, you know because she wants this skirt. She absolutely loves it.

 

Lesley and her partner couldn't pay the bills and had a difficult year. A Macmillan nurse helped her apply for benefits.

It was at first, when I first got diagnosed. And I could work then until I had the big Whipple’s operation and of course you’re signed off, they tell you three to six months. And that was really, really bad, because we only had my sick pay and my partner at the time, his wages. 

 

And then the credit crunch hit. So he was on shorter hours. It was really bad. Things got left by the wayside, like the council tax. We couldn’t pay that. So that sort of got left and they were getting dribs and drabs, but we were getting threatening letters.

 

How awful.

 

The electric built up, that was another one, you know different little things and it’s only since I’ve got diagnosed as terminal and now I’m signed off work permanently that we’ve got money coming in. It’s sort of a case of you have to be dying before you get anything. We get; you can get a Disability Living Allowance.

 

Have you got that now?

 

Yes we get that, so we’ve got that, we’ve got the working tax which we had before,

 

The what?

 

The working tax credit.

 

That we get because of my youngest one. We get that. My husband’s off with the stress of it all. But he’s on sick pay. But he’s not too bad but because we’re getting a bit more in and we don’t have to pay rent and council tax. We can catch up with what we missed last year, and that has, that’s virtually paid off. The electric’s paid off.

 

Have they all been more reasonable because they know of your diagnosis, and your prognosis?

 

The only one that was a bit funny about it was the water. I virtually said to the man on the phone, if you don’t believe me I’ll give you the phone number, you can phone my doctor. “Oh no, no, it’s not a case of not believing you, it’s just that this must be paid.”

 

Who helped you get the Disability Living Allowance? Did the…?

 

It was, no it was someone from, it was the Macmillan’s that pointed me in the direction. They’ve got somebody that comes to them,

 

And they help to see if you can get benefits. They help you and say, “Oh you might be able to get this, you might be able to get that.” And they tell you which ones to apply for. And some of them, you know, they, “Oh you might not get it, but apply anyway. There’s a chance.”

 

This is somebody through the Macmillan?

 

Yes. That er..

 

They helped you with that.

 

Yes, they helped us with that and yes, a lot of it’s, of course the housing benefit and council tax benefit. I knew we were entitled to something. But it turned out that we would get the full benefit for them, which was, that was a real help because we can catch up with everything that we missed.

 

Yes.

 

Now we’re finally getting our bills paid.

 

Good, that’s a bit better.

 

And its, they’re all nearly paid. It’s a fantastic feeling. But last year was really bad.

 

Lesley wanted to die in a hospice' she didn't want her children and her husband to associate her death with their home.

There was one stipulation that I made that was you know, whatever happens, I said, “Obviously you’ll know, or any other, you know district nurse or whatever will know when it’s coming closer to the time. You know, “Do I have to stay here?” Because I don’t want to stay here, I do not want to die here.

 

Where would you like to go?

 

I’d rather be, well preferably in a hospice, there’s a really nice one in the next town.

 

Have you been to see it?

 

Yes, my husband had an appointment with the psychologist I think it was, because he was getting, he was getting really stressed out about it all, and he just couldn’t cope. So the Palliative care nurse made an appointment for him to go so we could talk about what was going on in his mind. And I was there with him when he went. And it’s a nice place. It was very nice and calming. When you go there you can even have massages and all sorts of alternative therapies and things like that. I thought, oh that’s not bad.

 

Have you tried any of those already?

 

No. But …

 

So you have to go, you have to go there to have them?

 

Yes.

 

Okay. 

 

But they’ve only got ten beds so it’s not a certainly, a cert that you’re going to get there. You know. I said I don’t care if I’m in a little corner in the hospital, I said, as long as I’m not here. I do not want to be here. I said, so, I said, “Can you write that down in your little book.” So she wrote it down in her book, I don’t want to be here. She said, “Well why?” She’s, she said, “Its, a lot of people would rather be at home.” I said, “No.” I said, “I don’t want the kids walking in and saying, oh that’s where my Mum died.”

 

You know, or like my husband getting in bed and thinking, “Oh my wife died in here with me.”

 

Lesley made memory boxes for her children. She also wrote birthday cards for their birthdays after her death.

And have you sort of thought about making memory boxes or anything like that, for the children?

 

Yes, they’re on the way. They’re, they’re already started. I’ve got them…

 

Can you explain a little bit about that for somebody who doesn’t know anything about it?

 

I’ve put them in, my two daughters; they’ve got the same sort of box. They’re just a simple box that you can buy anywhere. You know with the handles, there’s them that you sort of stack you know like in different sizes, things like that. I’ve got them both one of them. My son’s might as well just be a plastic box, with a lid on it. But I’ve got him one of them. I’ll, I’m just putting in things like, my perfume. You know a bit of my perfume, and cards. I’ve wrote them birthday cards up until my daughter ‘till she’s 21, my youngest one.

 

Oh that’s lovely.

 

My eldest daughter, there’s a couple of cards until she’s 30, and my son ‘till he’s 21. And there’ll also be gifts in there. There’ll be gifts I’m going to give to my sister to keep hold of.

 

That’s lovely.

 

So my youngest daughter and my son will have, well, my youngest daughter will have one for her 18th and one for her 21st, and my son for his 21st, and my oldest daughter for her 30th.

 

That’s a really lovely idea.

 

You know, just a bit of jewellery or something. Just to say, “I’m still here, 

 

Yes

 

I’m watching.”

 

Yes, that’s a really nice idea.

 

Letters, I’m going to write letters and things like that you know. The bit's that they’ve given me over the years. Like I’ve still got you know the little cards that they write when they, they’re in nursery. And you look at them and you think, “Oh my goodness what the heck have they got here.” And you go, “This is lovely.” And I know, I’ve kept them. And I keep finding things as I’m moving stuff about and sorting things out. I’m finding bits and I go, “Ah I’ll stick that in the memory box.”

 

That’s really nice.

 

You can put anything in. You can put poetry in them. I got a leaflet off my palliative care nurse. She got it off one of the other nurses that works at the hospice that she’s attached to. It just tells, you know, things that you could put in there. Like you could even do a tape of your favourite songs, tape of you talking or a little video. Things like that.

 

Lesley had a laparoscopy before her Whipple's operation to check that the cancer had not spread to other organs.

So I had to have a CT scan, no I had the MRI first. That’s when they seen that it was this cancerous lump. So I had the CT scan just after the New Year. And then about a week or so after that I was taken into the specialist hospital to have keyhole to see if it had spread. They said if it’s not spread you’ll have the big operation, which involves all these different things. But it sounds like rewiring your insides. Can I say the name of it?

 

Was it a Whipple’s operation?

 

Yes. It was a Whipple’s operation. I looked it up on the internet and it’s sort of wow it’s massive. It was a nine hour operation it turned out. So he said if it’s not spread you’ll go for the big one. I said, “Okay.” I was only under anaesthetic for about half an hour. So as soon as I was coming round and I could stand up and everything they said, “Right, you’re fine to go. But your doctor just wants to have a word with you.” So this other doctor comes who’s off this team, he come and he said, “Right you’re going for the big one, we’ll let you know when it is, in about two or three weeks.” I said, “Okay fine. So that’s good isn’t it?” He said, “Oh yes, very good. Can’t see any cancer on the outside.” I says, “Okay.” And he told me what its, it’s sort of like. He said, “Imagine it’s like an orange with an outer skin. And it’s all still contained in this skin, but it’s not touched the outside of the skin, on the inside of it. Do you know what I mean?” I said, “Okay.”

 

At the hospital a doctor shocked Lesley with the news that she had liver metastases and that he could do nothing to stop the spread of the disease.

 I got my letter to go to the specialist hospital. So I went. My brother in law went with me as normal. Because he went to all my appointments because like I said we couldn’t afford to have my partner off at the time. So we, we really needed the money because I wasn’t, I was only on sick pay.

 

It was a really bad time last year. So my brother in law went with me as normal. You know, laughing and joking as usual. He’s more like a brother. 

 

And we went into the doctor’s office, and he [the doctor] is sat on the floor, which was quite strange and he, two chairs there so we sat down on the chairs. And he sat on the floor next to me. And whether it’s a comfort thing for him I don’t know, but, and he was, he started saying how the scan came out fine and, but they’d found some shadows on my liver, what are called metastases or something like that. So I said, “Yes, so it’s gone to my liver?” Because I’m not stupid you know. He said, “Well yes”, he said, “It’s gone onto your liver” sort of thing, “And these shadows are like little lesions on your liver and I’m afraid its, there’s nothing else we can do”. So, okay. And it didn’t, didn’t get me then it just sort of went over my head. I didn’t dare look at my brother in law for some reason, I thought I can’t look at him.

 

He [the doctor] said, “Right,” he said, “Right we’ll go and take you down to go and see the research nurse.” I said, “Okay, we’ll do that.” 

 

And I just went with him. And I’m thinking, “Now, he’s taking me down to see her. Maybe she, maybe she’s going to tell me something else, you know, something else they can do. But he’s the doctor.” And all of this is going over in my head.

 

Yes.

 

And it wasn’t until we got downstairs we were in like this big waiting area that they had, which, on the chemo unit, and we sat there and I sat on a chair and my brother in law sat next to me. And that’s when it hit me. I just sort of went and crumpled up onto him. I think he had a weep. I know I did.

 

You were with the nurse then were you?

 

No it was just me and my brother in law because, my doctor had just said you know, “Just wait here and I’ll go and get her for you.”

 

I said, “Okay.” But I crumpled up on my brother in law, I think he had a bit of a go himself.