John - Interview 33

Age at interview: 61

Age at diagnosis: 57

Brief Outline: John noticed some blood on his shirt and visited his GP. He soon had a minor operation but the growth was benign. 10 years later John noticed a disfigured nipple, and was diagnosed with breast cancer. He underwent radiotherapy, chemotherapy and took tamoxifen and Arimidex. John also had a heart attack.

Background: John has two daughters and lives alone. Ethnic background' White British (English).

More about me...

 John noticed blood on his shirt but had no signs of a cut, and went to see his GP. He was quickly referred on to the hospital, and told he had cancer and would require a minor operation. The biopsy was benign. Ten years later, John noticed that the same nipple had changed shape. He saw his GP promptly and was once again referred to the hospital, where he underwent a mammography and fluid was taken from his chest. The tests showed that John had cancer and he was told he would need a major operation. John was initially stunned but accepted his diagnosis and decided that a positive approach to the cancer and treatment would be the best option. John told both of his adult daughters – one was very distressed and the other seemed to ‘take in in her stride.’ He also told his friends, and both friends and family were very supportive. Before diagnosis, John did not really know any details about breast cancer, and was the first in his family to have cancer.

 

John describes feeling scared and uncertain when he went for his operation. Following the operation, he had a drain under his arm for around 20 days, which was longer than he had expected. John was told that he would need to have radiotherapy every day for six weeks. The radiotherapy went smoothly for three weeks, without side effects, until John started to have trouble breathing. Tests showed that John had had a heart attack, and he was kept in hospital for three weeks, during which three blood clots were found. John then received the remaining three weeks of radiotherapy, but this was not successful and he was told he would need to have chemotherapy. The chemotherapy treatment involved a combination of four drugs. John read in the information that he was given that one of the drugs could cause secondary cancer within five years and after this decided not to read much cancer information, although his youngest daughter did. He was also prescribed tamoxifen which he tool for a while before changing to Arimidex, which he will continue to take for many years. Whilst John did not experience any side effects from tamoxifen or Arimidex, he found the effects of the chemotherapy drugs ‘horrendous.’ Effects included gritty eyes, headaches, mouth ulcers, skin rashes, nausea, shakes and extreme tiredness. He did not experience any hair loss. John still experiences some irritability and short-temperedness, as well as some problems with short term memory, which he feels is as a result of the chemotherapy. During his treatment, John found the Macmillan nurses very supportive.

 

John had a normal biopsy result on a breast lump which had bled several times. Ten years later,...

Well the first thing I had a brush with cancer I was playing snooker at my local club and someone said to me, "You've cut yourself you've got blood on your shirt," and I thought that's odd you know. I just didn't know how I'd cut myself playing snooker and I didn't take any notice of that at all. And then 2 days after that I was playing snooker again and someone else said, "You've cut yourself, you've got blood on your shirt." I thought this can't be right because there was no cut anywhere or anything. So I went and saw my local GP and he sent me to see a doctor at the hospital. And this was on the Wednesday and on the Friday lunch time I got a phone call and the doctor said, "You're in hospital Tuesday." And I said "Well hold on a moment I've got a job you know." Then he said, "Well don't say no now," he said "because in 6 weeks time you might not be able to say anything," he said "you've got cancer." I thought this is ridiculous you know you don't think that it's going to happen to you. So I went and went into hospital and it was a very minor operation as such and after 3 months they told me its benign which was I thought terrific you know that was a let off really more than anything. So then I didn't think much of it at all. But after that about 10 years after that I noticed that my nipple was getting very disfigured on the same side I had the operation, so I've gone to the local GP again and there again I've gone to the hospital and he took, they took a sample of fluid from the chest but within 10 minutes the registrar came in the room and said, "You've got to have an operation," so he must've known before they took the sample. So that didn't take very long, I've gone into the hospital again and it was quite a large operation apparently, they didn't think it was going to be so large until they opened me up.

John was given Arimidex rather than tamoxifen after it was discovered that he had had a heart...

When did they put you on the tamoxifen?

 

It was straight after the operation.

 

Did you have any side effects from that?

 

As far as I know I didn't. I still get effects that I'm, I feel very tall sometimes. I feel about seven foot tall and the ground is so far away. And when you walk downstairs I think "oh it's a long way down", you know. But I think it's just the combination of drugs I'm taking at the moment.

 

Is it a kind of dizzy feeling?

 

No it's just that you feel, you feel rather tall that's all. Yeah. Very funny feeling, yes.

 

And when did they change to Arimidex?

 

Once they'd said you've got to have radiotherapy. I think they changed it then.

 

Did you notice any difference?

 

Not really no because I had no side effects from the tamoxifen.

 

And then with the Arimidex?

 

No, no.

John explains how he manages with severe lymphoedema.

But since I've had this operation my left arm, I've now got lymphoedema and my left arm is not that clever at all at the moment. My daughter has to help me. She comes over to help me.  

 

I live by myself now, my daughter comes over quite often because I can’t undo screw caps on jars or things like that and I can’t hold anything in my left hand. So everything I do is just right-handed mainly. 

 

How long have you had the lymphoedema?

 

About 3 years now.

 

3 years and you’re learning to live with it?

 

Yes they measure the arm every so often. It was big but now I think it’s getting smaller.

 

Yes so how often do you go to the hospital for that?

 

Every 3 months they measure the arm now.

 

And do they change the sleeve?

 

Well they give me new sleeves yes.

 

Yes.

 

And I have a special glue to hold it on because it goes right to the top of the shoulder.

 

And have you been doing exercises for the arms?

 

I did after the operation but once it started swelling it was, you couldn't do a lot with it. You couldn't do a lot with it, it was very painful round wrist and the top muscle.

 

Yes so with the lymphoedema what kind of changes have you made, what, are there things that you were not able to do anymore because of the lymphoedema?

 

Yes I do most things with my right arm at the moment. I can't hold a glass or a cup in that hand, it just doesn't work properly.

 

Yes, you do everything with your right hand?

 

Yes, yes.

 

Have you made changes in your home or in the kitchen for example?

 

Well yeah you have to yes so my daughter's there quite often to help out.

 

 

John no longer worries about showing his body on holiday, but he had had to get his confidence back.

But it must be horrific for a woman to have breast cancer, it must be terrible. I don't think it's as bad for a man, you can cope with it. As I said I went on holiday last year and that's the first time I've actually shown my body walking along kind of thing you know because it was a nice hot day but that's the first, I've had to get my confidence back in that respect. But I don't worry now.

 

How did you feel after the operation, did it take a while before you could look at the scar?

 

Yeah well it was covered up, it was plastered up kind of thing but I did look at it yeah and there was lots of metal clips about you know, half way across my body but they were fine.

 

But you've got the confidence now to, on a beach for example to take off your...?

 

Yeah I've a lot more confidence in life in general now yeah because if that can't hurt me then nothing can you know, that's how I look at it anyway.