Interview 150

Age at interview: 35

Age at diagnosis: 30

Brief Outline: Testicular cancer (teratoma) with secondary tumours in lung and abdomen diagnosed in 1997. Orchidectomy, followed by 5 months of chemotherapy (10 days in hospital each month).

Background: Separated, 1 child.

More about me...

In the summer of 1997 he started to suffer from back pain. A few weeks after the pain started he went to see his GP as it wasn’t shifting. His GP suggested that the pain may be from lack of exercise, so he started playing football and other sports but found that his back pain worsened. His nipples also began to swell and became very sensitive. He decided to go back to his GP, who suggested that the sensitivity could be due to a new deodorant. He was not convinced and explained that he had not been using a new deodorant. The sensitivity continued to worsen until it became unbearable. He then found that he started to sweat uncontrollably and excessively. He sought a second opinion from another GP, who took a blood sample. The GP shortly contacted him with the results of his blood tests, which suggested that he might have a slightly overactive thyroid, and referred him to a thyroid specialist. Whilst waiting for his appointment he felt incredibly ill and found that painkillers were not alleviating the pain and had his appointment moved up. He underwent further blood tests and a full physical examination. The specialist suggested that he may have a hormone imbalance but would wait for the test results to confirm but found the test results to be unusual. After conducting a second set of blood tests the specialist called him back in and diagnosed him with testicular cancer. He has always been the kind of person to get on with things and tries to see the funny side in everything. He explained how at the time he had joked with the specialist but had really felt overwhelmed and upset by the news. He was admitted to hospital where they conducted an x-ray and ultrasound, which showed that the cancer had spread to his back and lungs, and that there was swelling in his right testicle. He was shocked to find out that the cancer had spread to so many places. He underwent an orchidectomy to have his right testicle removed. 

 

He was then started on a 3 month course of chemotherapy (10 days in hospital each month). From his treatment, he found that he started to lose his hair. He described this as one of the worst things about the process. He explained that he did not mind being bald but found it difficult losing his eyelashes and eyebrows as it made him feel unusual. He decided to remove any remaining hair and found wearing a hat made him feel comfortable. He felt disheartened when the doctors informed him that he needed a further 2 months of treatment as his tumour markers had not come down enough. He started to experience side effects from the bleomycin and cisplatin chemotherapy treatment he was on, and suffered from damage to his lungs and kidneys. He then started on a course of carboplatin, which he found out was slightly less effective. This worried him but he couldn’t afford to continue with his previous treatment. Although his lungs healed, he was left with 70% kidney functionality which left him anaemic. He underwent regular blood transfusions and had Erythropoietin injections for a couple of years until his kidneys stabilised. After the further 2 months of treatment his tumour markers were at an acceptable level. He felt worried about stopping chemotherapy but found comfort in the monitoring system the hospital had in place. His hair eventually started to grow back, which he described as his first milestone to feeling normal. 

 

Although he had support, he explained that he had made it difficult on himself and felt that he could never truly speak to anyone about it. He told his parents but decided to withhold information as he didn’t want to upset them or let them see what he was going through. His Dad had a heart condition and he was afraid how the news would affect him. He found great support from two other men on the same treatment regimen, who also had testicular cancer. He explained that they were able to share their experiences and make the best out of the situation. He said that he also found invaluable support from the people he worked with and felt comfortable amongst them when he was losing his hair. As he was determined to keep working during the treatment, they ensured that he was able to work flexibly and supported him in his decision. However, he only had male friends and found that they were not always good at talking about problems and mostly suggested a drink down the pub. He explained that he would have liked someone to talk to and wasn’t aware counselling was available when he was in hospital. He felt that the counselling services should have made themselves more available. 

 

He found that having cancer changed his attitude towards life and that is it important to live for today and to take opportunities. He explained that losing a testicle did not bother him as he just wanted to make sure he got through it so that he could see his little girl grow up. He said that it did not affect his masculinity and did not affect him sexually. He believes that the operation is nothing to be frightened of as it is a small price to pay to still be here. He was determined to get into shape and do the Great North run, which he said he wouldn’t have been able to do before the cancer. He has now done the run a couple of times and raised £3,000 for hospitals. As he still felt uncomfortable in warm environments and anxious about sweating as it reminded him of how he felt before he was diagnosed, he decided to try hypnotherapy to put it all behind him. He noticed a big difference in his anxiety levels and felt more positive about things. He also acted as a representative for an cancer charity campaign. He said that he was happy to talk about testicular cancer and wants to support other people who are going through a similar experience. He explained that although he was unable to access the necessary support, he finds comfort and satisfaction in ensuring that other people understand what symptoms they need to look out for. He feels that GPs are unequipped to notice the more uncommon symptoms of testicular cancer.

 

Cisplatin chemotherapy for testicular cancer reduced his kidney function by 30 percent; he is...

And as far as the kidneys are concerned I was left with kidney impairment. So I'm still treated by [hospital] on a 6 monthly basis now and it's a monitoring situation really. I've got about 70% kidney functionality.

 

Could you say what's happened to your kidneys long term please?

 

Yes, so because of the effects of the cisplatin which, as I say, you know, they were doing kidney tests all the time and it was the kidney test that told them that, you know, to cut the cisplatin out. So you are looked after and monitored. The cisplatin left me with kidney impairment, so I'm now treated by a local hospital for, every 6 months I go for check-ups to make sure my kidneys are okay. And, you know, for the past 4 years since I started seeing them the kidneys have been stable, there's been no deterioration at all in the kidney functionality.

 

The only slight problem that I have that you could say was kidney related, now I have high creatinine levels but certainly nothing to worry about. And occasionally I might need to, you know, maybe a couple of times a week, 3 times a week I might need to get up during the night to pass water. I asked them about this last time I was there, which was a couple of months ago, and they said it's potentially a side effect of kidney impairment, the fact that you can't process your urine properly. But again, you know, the fact is I'm here and I wouldn't have been, you know, without this treatment.

Counselling and hypnotherapy are helping him to deal with anxiety and depression after having...

And to be honest with you I'm now at the stage where it's probably as bad as it has been and I'm having some counselling for it and I've even started with hypnotherapy to try and put all this behind me. I went to see my GP and, you know, he prescribed some medication. And I don't want to take medication, I want to do it a different way and I want to try and put that sort of thing behind me because it's all a reminder of what happened, you know, 5 years ago nearly now.

 

Can the National Health Service provide hypnotherapy?

 

Well when I went to, I've also got, can I say this private health cover.

 

Yes.

 

And they won't cover it. But I'm in a situation where I went to see the GP and I'm having 3 or 4 sessions locally. I don’t know whether it's available on the NHS but I don't know what the waiting list would be like as well.

 

So you're having to pay for that?

 

I'm paying for it, I want a quick fix to get this sorted because it's…

 

Have you started that yet?

 

Yeah I've had about 3 weeks of that now, yeah.

 

Have you noticed any difference yet?

 

Yeah I've noticed quite a big difference, I'm a lot more positive about things and, you know, a lot less anxious as well, I was starting to become anxious about things and it has made a difference.

 

Do you mind explaining what hypnotherapy is like?

 

Yeah, well I started off by describing things that had, sat down with the lady and described the things that had gone on over the past, you know, 4 years, not only the cancer but other events that had happened, you know, deaths and, you know, divorces etc. etc. And I told her one of the main things that bothers me, that I've become anxious about is the sweating issue and it bringing back all the memories. And the sort of thing that we do is we sit down and for probably three quarters of an hour she talks me into a relaxed state where I'm still in control of everything that I do but it's in effect getting through to your subconscious and relaxing you and teaching you things to do if you're becoming stressed. Then we talk through various images, relaxing images, laid by the beach etc. and remembering to do this sort of thing and think about these things if you start to feel as though you're becoming a bit anxious and you find that, you know, it does relax you.

 

So if you start to sweat and you start to remember how you first found that you had cancer, then you, start to think of nice things, other images?

 

Yeah, I just try and take a few deep breaths and relax a little bit and think of different things, things that, you know, make me feel happy, as opposed to the things that remind me of what had happened previously.

 

And that's beginning to help is it?

 

Yeah, it is, yeah.

His long-term girlfriend gave him no support at all after his testicular cancer diagnosis and...

At the time the girl that I was with that I've been with long-term, she provided no support whatsoever, she was worse than rubbish, and in fact she made it quite clear to me that she didn't want to be with me.

 

Oh dear.

 

So that caused the end of our relationship. But again it was somebody that I couldn't talk to, so much so that - I can laugh at it now but I mean it hurt badly at the time - so much so that I phoned her up and told her that I might be left with long-term kidney damage. And it was a couple of weeks before Christmas, and said that they'd changed my drug regimen because it was starting to damage my kidneys. And she said, "Look I'm not interested, I'm getting ready for a Christmas do". And I went, "Oh thanks very much". And that was a really tough one as well.