When people say chemotherap it’s one of these things that you automatically think oh God, you know, if you’ve got to have that, you’re on your way ou sort of thing, you know? But the advances in drugs these days are so great that, you know, they’ve come on so much that I think it’speople’s perceptions of it are so different, before and then after they’ve had it. And, I can remember having, being really, really nervous before I had the first one, and thinking I’m going to be thowing up, I’m going to be, you know, so ill and this, that and the other, and can remember sitting here in the same chair, having the chemotherapy treatment, and I decided that I’d have cold caps. And they gave me a couple to stick in the freezer and I thought well, didn’t bother me whether I lost my hair or not, but if it’s there to try, then why not try it? So, been putting these freezing cold ice caps on, which were not very nice, andand managed to bear it, though, so that was alright, and started having the chemotherapy, the first treatment, and it was a very strange thing, especially the one they give you and itif they put it in too quickly it feels like you’ve got a pricklysitting on something prickly, if you know what I mean? Think it was epirubicinthe red one but yeah, I mean, I remember seeing all the different tubes of drugs that had to be put into me and you think God, that’s a lot, there are so many tubes, great big ones and small ones And I remember [my wife] saying to me afterwards, I went grey [laughs] during the chemotherapy, which was strange, but once I got the first one out the way and I knew what it was like, and how long it would take and that sort of thing, then I knew, I thought well, fine, that’s the first one out the way, only five more to go. It wasn’t too bad, and now we’ve just got to wait and see what happens, you know, whether I feel sick or this sort of thing
So it sounds as though your experience of treatment was quite a positive one?

To me it was yeah, I mean, before as I said, I was sort of dreading the word chemotherapy and thinking what was gonna happen, I was gonna be really ill, and then coming through it out the other side and you’re looking back and you think well, actually, for me it wasn’t too bad you know

So I obviously had the operation, and then I had to go back and see the oncologist, and I refused chemotherapy.

Did you?

Yeah. I refused the chemotherapy, but I had quite an intense course of radiotherapy.

So tell me a little bit about, you know, what made you want to…?

The chemotherapy. Actually, when he checked it all out, I always said, before the thing, I didn’t want chemotherapy I really didn’t want it. Everybody I’ve ever, I’ve lost a lot of family with cancer over the years, and every one of them that had chemotherapy didn’t make it anyway, you know? And it’s such a, I mean, it’s worse than the illness, you know? People go through worse symptoms with chemotherapy, you know, and I said that I really didn’t want it. And I mean, if he had said, Right, you either have it or you die, obviously, I would have had it, you know? But you know, when I said to him, No, I don’t want chemotherapy, he said could he put me on a course of chemotherapy and then radiotherapy, and I said, I really, really don’t want chemotherapy. So anyway, he got on the computer and they come up and all it was giving me was an extra two percent anyway. So it really did, you know, and then he agreed well he said, Well, really, he said, for what it gives you, he said, I don’t blame you for not having it. You know?

So he supported your decision?

He supported it, yeah. He supported it. He didn’t at first, but once he checked it out, he supported it. He said, It’ll only give you an extra two percent chance. He said, You’ve got, with your radiotherapy and medication afterwards, give me eighty percent. With chemotherapy, it gave me eighty-two percent, you know, which I thought was too small a margin, really, to go through all that.

That must have been very tiring, going backwards and forwards.

It was, but then when you do your chemo, you have the chemo in your hand but the day before you’re having the chemo you have to get a blood test, go back to the hospital, well, the hospitals can have it, up at the hospital and have a blood test, they stick it in the vacuum chute and schtoom it’s in the laboratory, to make up whatever mixture they think I ought to have. That was another problem, another tiring problem. Alright, they had, they have to make each dose to suit the person that day, but I’ve been at the hospital waiting my turn. I got there just before time, I’d been waiting three or four hours for this stuff to come from the lab, and it’sain’t spoke to anybody that’s had it but it ain’t nice at all. Like a milk bottle And stick it in andabout five or six sorts of bottle, a little one about this big and stick it in and they said that’ll make your bum itch, and it did.

Did it?

I put it in here and within seconds, my bum itched. But only for a couple of minutes and it had gone. I said, Phew, that’s quick, it’s got to go from here all up there, round here, down ther.

What was the experience of having chemotherapy like?

Oh experience. it’s difficult to explain the experience, but anyway, it is terrible. It is traumatic, but it is worthwhile. Just for a few days, and I can see now, I can imagine, now, those feelings, like it was something which is normal, the benefit that it brings afterward, we’ll have to look forward.

Ok – did you think that at the time?

No.

No.

No.

What did you think at the time?

I was just thinking I shouldn’t have chemo, yes.

Did you feel that you were sort of persuaded into it? Because you said that you might not have got the Herceptin?

Yes.

Did you feel pressured?

A little pressured, but I think they did the best thing for me. Yes. I think they made me decide. They made me decide the right decision, yes. If that was not the case, I might not have taken the chemo – so I might not be able to speak whatever I’m speaking now.

So what happened on a day that you were going for chemotherapy? Did you have to go to the hospital early? Or

I go to hospital on time. I usually go to hospital on time – that was in [hospital] in central [name of place]. and the staff were very good, doctors were very good as well, and everybody knew me. Every time I go there, they say, well the smiling man is comin. So they are very good. They are very good right. I went there for two years. The same ward, same people looked after me.

Two years for chemotherapy, or was that because you had the Herceptin after?

Herceptin as well, yes, same place.

What side effects did you have with the chemotherapy?

Oh, side effects, I had blurred visions on the very first day. I got tired, I got, you name it. Tongue, taste. My tongue is still tingling- my taste is gone. And I had pain, I got leg pain. You can’t eat. Even sleep, you want to sleep because of the energy was not there – so there’s a lot of side effects, which is difficult to explain. But I went through all of these side effects. However, it didn’t last long. You see, the side effect, especially the biggest effect is on the third and the fourth day. First and second day is not a problem – yes, but even that, I was still driving on my own.

Who took you to have chemotherapy?

I was going on my own. Yeah, sometimes my wife was coming, sometimes I was going on my own.

Ok – and did you lose your hair?

Yes, I did – I lose my hair on the very first day.

Wow.

On the very first day, when I went home, had a shower, and all the hair gone.

Right.

Yeah.

Was that your hair here and your eyebrows and eyelashes?

Yes – everywhere.

Everywhere.

Yes yes.

And how did that make you feel?

Before going for chemo, I nearly shaved my head but it was not shaved, it was a number one cut, haircut –

I started chemotherapy on June 8th2006, four doses of chemotherapy, to try and reduce the size of the tumour. That particular chemotherapy did not affect me in any shape or form. I could carry it on, and I was fine. I had my operation in September of 2006, and then I think it would be probably be October I started with the second round of chemotherapy. Now that chemotherapy was a much stronger dosage, different to the first lot and that caused blistering at the mouth and in the end all you could, all I wanted to eat was something that was very sweet because the taste buds went completely you couldn’t, everything tasted funny, odd, and not very nice really. Radiotherapy started in the, towards the end of November as well as at the same time as I was having chemotherapy and I had my last chemotherapy on December the 28th.

Just between Christmas and New Year.

Yes, but, sort of well an amusing point is that’s where, my youngest daughter got married on the 1stDecember and her in-laws, her father-in-law took me to get my radiotherapy treatment that particular morning. And I’d just recovered, I’d recovered from the previous dose of chemotherapy enough so that I could give the speech, the father’s speech at the wedding in the evening, so that was a good thing.

That’s, so that’s an awful lot of things to be dealing with at the same time.

And four days prior to the, I think it was four days, prior to the wedding, our first grandchild had been born as well. So there was plenty to keep on going to take your mind of this chemotherapy.

The symptoms from that second lot of chemo, was, you’ll get cold or flu or

Right.

And then that was after about three days cos we always went in on a Thursday or something like that, to have my treatment and then after that I got this cold, you know I went to bed, then two days after that the blistering started, so then you go into a pattern.

So did you have that after each of your did the blistering come after each dose you had?

Yes, yes, and you have to have, I’m thinking now, you have to have steroids You have to take steroids before you went for the

Yeah. Was that prednisolone or anyway.

I’ve got my book, I’ve got my book here you can look at that. You had to have steroids prior to going for your treatment and then you took them just for two or three days I think it was. Whether that was to prepare you, so you could stand it.

Yeah. Yeah. And so how many doses in your second lot of chem?

Four.

You had four, four doses there. And did you have other side effects, did you, did it affect your hair or?

Oh well it did with the first lot, all my hair came out. And so my daughter, my youngest daughter went off and bought a pair of clippers and ever since then, if anything, any hair grows, have it all off! as I am!

So did you have quite long hair before that?

No, not really it was thinning a bit so.

And did you lose your eyebrows and

I think so, I think everything went, yes.

So had, how did that feel at the time?

sort of odd I suppose but I wasn’t again, itdidn’t, didn’t bother me. But again, it’s probably different for women, I mean a lot of men look like this now.

And did you have other side effects from the, from the chemotherapy at the time?

Yes. The nails go funny, finger nails.

When you say they go funny?

Yeah, they just go a bad colour. Thicken up drop off still a little bit of tingling in my finger ends, but the worst one is my right toes they can, well they’re partially numb. And those toe nails are em, gross really.

I was on FEC. Have you heard of FEC? I was given FEC andthe first lot I found quite easy, but by the time I got to the third or fourth one, my veins were like plastic straws, you know? The feel, I could feel them underneath and they weren’t sort of giving.

So yes, the third or fourth, and I was telling my wife that the pains in the armsbut as I sat there for each visit, because it’s sort of monthly, to let the body recuperate, I was sitting with people that were six stone and grey and I looked around and I thought my God, I haven’t reached that stage ye and of course I’m a very positive person, so I try to keep positive all the time and I thought well, at least I’m progressing alright and if I can get through this, then I’m fin and eventually I did get through it but as I say, the most disconcerting thing for me was the arms, the pains in the arms.

Just in the veins?

In the veins, yeah.

All our family know, and her family, the brothers ring me occasionally to say, How are you doing, Ben because after the chemo, of course, I lost all my hair, and that’s one of the points of interest. I was offered the cap, the cold cap, and I said, Yeah, alright, if it saves my hair falling ou, so I went along to the chemo nurses and they said, No, you haven’t got enough hair, it’s gonna freeze your head. it’s gonna fall out anywa so I looked at my wife so we said, Yeah, alright, we just have to put up with i and so, yeah, itit duly fell out. I combed it and it started to come out so I went to the barber’s and had it all taken off, and then within a few months, it’s grown back.

Mhm. And was that hair loss everywhere, on your arms and your eyebrows and your eyelashes?

Yes.

Did it all go?

Yes.

I found the, chemotherapy very hard, I must admit. It was in a communal room, I’d have preferred it to have been in a separate cubicle. And, I- just found it very hard. Very claustrophobic really, you get these things shoved into you, and yeah and- I was okay to start with, I think I was okay on the first one, I didn’t really have, from, from my memory I didn’t really have very many after-effects, of that one. And possibly not much from the second one but it builds up, the effect builds up doesn’t it? And, then the later ones, for a week afterwards, I was you know, out of it, really, not very well andertainly later on, in fact I was sick during the actual procedure, a couple of times. Yeah, whether it was just a mixture of anxiety and claustrophobia and the heat and all the rest of it, and the process you know. So, you know as I say, and I lost my hair as well of course. Which- I didn’t think that would bother me but it did. Cause I’ve always had a- you know, I’ve always had a good head of hair really. And I thought it would- well I coped with it but, I didn’t really like to go around too much you know. Felt a bit sort of, self-conscious, you know. I must admit I was heartily relieved when the chemotherapy was completed. And it took me, well I think it took me several months, gradually, to build up until- you know to feel more like my old self, you know. My hair gradually came back.

I was very, very nervous for the first course of chemotherapy cos I really didn’t know what to expect. It wasmost sessions were two hours in time length. They injected thethe drug and all the other drugs that go with it to combat nausea and so on and so forth, andI think the worst thing was that they didn’t warn me, when I talked about constipation, I know it’s not a subject that one wants to talk about, but had they warned me prior towell, he actually gave me senna tablets. He said, Well, take them if you need the buton the first time round it was justI can’t believe it. It was just unbelievable. I mean, I thought the whole world, I thought that was worse than having chemotherapy, but I learnt after that, you learn and you pick up certain things that when they give you the anti-nausea tablets, which are very strong, and the combination of the chemotherapy does tend to bind up your works, and I found that prior to having the next chemotherapy that if I were to take the senna in the morning, in the evening, and then the following day morning and evening and carried on that I wouldn’t haveand after that episode, fortunately enough, I had no problems right the way through to the end, but the first lot of chemotherapy was to me was a dawdle. I was on taxotere for the first four, which I tolerated it quite well. I had a little bit of side effects, a little bit of a nausea and a little bit of sort of gastric reflux and, you know, the taste of the metallicbut when it came to the next four, which was the docetaxol, that was, that I found very, very hard, becauseit would kick in five days or six days after the chemotherapy. It made me extremely lethargic, tired, loss of appetite, just wanted to sleep. Your mouth becomes, you know, with soresand then afterwards your eyes start to stream and your nose starts to stream and that carries on, but then I was getting thesepains in the knees, in the knee jointsand I’ve forgotten what it was called. I don’t know, it was nephritis, I’m not sure if I’ve got the right expression for it, but it attacked my toes, the pain actually attacked both, as soon as it hit this foot, it would hit my left foot and then the pain would be excruciating. I meanI just, it would just come on [clicks fingers] just like that and I, I just didn’t know where to put myself and the only thing that actually worked was paracetamol. Nothing else would touch it. Volterol wouldn’t touch it. I
Was it neuropathy?

Neuropathy, yeah, sorry. What did I say? I called it nephritis. No, neuropathy, yeah, andI learnt again with that how to control it. I knew as soon as, I always used to carry the paracetamol close by me. I knew as soon as my knee, I’d get the pain, I’d take the paracetamol. The trouble is, the paracetamol would take an hour to kick in but it was the only thing that sort of calmed the pain down, nothing else would, you know?

On my first set of chemo, I had it on the Monday, and I’d read the booklet, it said if your temperature is thirty eight, for- after two hours. Well on the Sunday I had quite a high temperature, so I rang the hospital up and she says, Come i. So I went in and they obviously.., so she said, We’ll have to keep you in overnigh. So I said, Why Well, [laughs] there’s a bit of a saga there, because [name of hospital] has no, blood analysis facilities, it took them three goes, cause they have to send it from [name of hospital], to [name of another hospital] which is quite a distance as you probably know. So when they discovered that- I can’t remember what it was, but one of the components of my body- blood was point one, lifted to point one, which is literally immeasurable, normally it’s fourteen, they kept me in for three days, and I had a severe infection. And so, the- when I came out the sister was in her forties, sat me down and she says, Right, I want you to listen what I’m going to say to yo and she said, You were very seriously ill and you didn’t realise i. She said, it was an infectio, she said, can you try and keep away from public place, she says and when you do a job like cutting the grass which I’m sure you will, if you feel tired sit down, and-. And I said okay, it’s like eating elephants, bite it off slowly. So, the Friday night prior to the Sunday, we have an old gentleman’s club in the pub where we put the world to rights. So I’d been to the pub. Now pub glasses are notoriously not cleaned properly. So I completely stopped going, to anything like that. And I went out obviously but, I didn’t eat or drink outside. And I kept- for the whole rest of the period I was perfectly all right.

I had FEC which is a combination of drugs, and then taxotere. And they felt confident that this would take my hair off. So, I just, for whatever reason, I thought I would be dispirited to lose my hair. So I thought I’d put up with having the cold cap. I expected it to be pretty uncomfortable, in fact it was terribly uncomfortable. But I did persevere.

So did you wear the cold cap during the whole time the treatment was being administered and

Yes and for a little period later, sort of two hours in total I think. And – it is shockingly cold when it’s put on. It’s a very tight – in essence it’s like those sleeves that you put on a wine bottle to cool it. And it’s very tight, it has to be tight. It essentially freezes the follicles so that they don’t take up the chemotherapy. And as I say, it’s shockingly cold. It makes one feel a bit sort of queasy, the actual impact of the cold.

Do they warm the rest of your body to compensate for you losing –

No, no. But it was plenty warm in the ward.

Right, yeah. And did you wear that each of the six times that you went there for chemotherapy?

I did, yeah. I did. I’d spoken to a number of healthcare professionals who’d tried it, and they said that they wouldn’t want to wear it. And I remember my wife had said that she couldn’t, she never, heaven forbid she had to go through this treatment, she wouldn’t, couldn’t bear this idea of the coldness.

And was the cold cap fully or partially successful in helping you to keep your hair?

Oh I should say, yes, I remember after the first session of chemotherapy, getting up in the morning and having a shower and combing my hair and thinking I wonder what’s going to happen. And I remember just piles of hair falling out. So I think already my sideboards had started to fall out and… I thinkI concluded that my hair is a bit greyer now than it was then, but it’s, I have, it’s generally been quite fair, and I think I must have a combination of quite fair hair and quite dark chocolate brown hair. Which is a mixture. And the chocolate brown hair all fell out.

It was basically in a matter of days. So I just remember it – it was quite disconcerting, it’s very… in the bin – but it left me with finer, blonde hair. Which stayed, for the whole period. So as I pointed out, I have probably had more hair then than most of my male colleagues! I had quite – much longer hair then, I think, it’s quite short now but I’ve tended to have unfashionably long hair. So – and I had a very good – my hairdresser, who I go to regularly, who is not a specialist, just at the end of the road you know, but it’s nice to know someone that one can have a conversation with. And she was actually great. She made real efforts to make the best of my hair. Which was – uplifted my spirits a bit. That was nice.

I still have the problems now but not so bad cos they seem to be gently beginning to ease off, slowly, so my left foot is beginning to come to with my right foot is stillmy toes, underneath my toes are very, very numb still and my toenails have gone discoloured, my nails are all fallen off partly, I bang them, a bit falls off here and a bit falls off there, but I’m not particularly bothered about that, and the same with my feetbut I suppose on the wholea lot of people have said to me, You know, you’ve combated it, you know, pretty well I’ve avoided, yesI’ve had depressed days but I look at it this way is – thank God I don’t feel ill. I might have lost weight but I don’t feel ill cos I can now walk properly whereas at the beginning of December I couldn’t walk up the stairs. I just couldn’t walk up the stairs. My muscles still hurt. It does affect the backs of your muscles and the tops of your muscles on both legs, and if I do sit down for long periods of time I can’t get up until, until I actually start to flex my leg muscles.

I don’t think they warn you enough about the side effects. I know my oncologist writes down everything I say. In fact, I have to see him tomorrow evening and week by week he says, Well how are your muscle and I say, Well, they’re not really that improving but they’re marginally improving but it’s not quick enough He’s sort of, he’s saying, Yes, well, Rome wasn’t built in a da, so I said Well, that doesn’t make me very happy because I’m very uncomfortable. I can’t stand up, I can’t do, you know, I can’t do certain things that I want to do, and I’m stuc. He says, Well, you’ve just got to be patient. So I had to take his word for that, I’ve got to be patient and, you know, in a few months’ time these symptoms will disappear.

But you feel they are getting better?

I feel, yeah, slowly getting better. I know my left foot’s a lot better thanmy right foot is, is marginally, I’m not having one of theone of the symptoms where my feet would go very cold. I can have the heating up very high here and my feet would be like ice and it would take a couple of hours when I get into bed for my feet to become a normal temperature.

So did you make the full six courses then?

I did make it to the last one, I always remember they couldn’t find a vein. They stuck my hand in a bucket of water to try and find one. Of course I think they just died as soon as a needle came towards it, and they couldn’t sue this arm, right arm, with, veins were lovely, but they couldn’t touch them. And I remember feeling that last time was, it was – almost nauseous thinking about it. The final one was the worst. There was no feeling of relief, I’m not coming back for any more of this, it was just awful and I came home.

That was everything about it? The extreme exhaustion and again the effect on your mouth, and the nausea and everything?

Yeah, it was just horrible. Anyway, what was more horrible, in my remembrance, is not the chemotherapy because if someone asked me what was the worst time, I would say two things, the worst thing was that core biopsy they took which was so painful, and the next thing was this feeling of absolute abandonment, after the last chemotherapy treatment. There was nothing.

So they didn’t- so you didn’t have any follow-up?

Oh yes of course I did.

You did.

But my whole life had been for six months, at least, been revolving round doctors, nurses, hospitals, medicine, treatments, and then nothing.

Yeah.

It was such a feeling of being abandoned. Not that they would’ve thought that that was a bad thing, but I just felt kind of bad. Or kind of abandoned really. I did have follow-up appointments with the oncologist, and of course I spoke with the breast care nurse.