As EastEnders’ character Stan Carter continues to refuse chemotherapy and other treatments for his advanced prostate cancer, we talk to Louise Crossley-Birch, 56, whose husband, Malcolm, has advanced prostate cancer and is dealing with some of the same issues as Stan, including managing pain. We hear about Malcolm’s treatment, particularly chemotherapy, and how they are facing the future and the prospect of losing Malcolm.
Louise and Malcolm met in 1993 and married recently. They’d both been married previously and had children – a son each. When Malcolm retired early, he moved to Wensleydale in Yorkshire. Louise was still working in Manchester as an advanced practice nurse so they divided their time between the two places. Now they spend most of their time in Wensleydale.
“Malcolm was 55 when he was diagnosed in October 2010. He was in the downstairs loo and I noticed he was taking a long time to urinate. So I told him to get to the doctor as it could be his prostate. I thought it might be an enlarged prostate. He went to the doctors and they referred him on for tests. The results came through while I was away with the girls – he phoned me on the morning of the last day and he said: ‘It’s cancer. And it’s quite advanced.’
“I drove straight to Yorkshire to be with him and I think we spent the day crying. It was an absolute bombshell. Malcolm felt it was going to be a very sudden thing and that he would die soon. He had no family history of the disease and he didn’t know what to look out for. He struggled being angry with himself and thinking he should have spotted it earlier.
“He was told he had a gleason score of 9 and it was T3. We understood that the higher the gleason score the more aggressive it was. But I looked it all up. That’s when I came across the Prostate Cancer UK website. It was very easy reading – such an amazing resource.”
“He’s had a lot of different treatments. He had surgery first to remove the prostate as that sounded like the best option. It turned out his cancer had spread outside the prostate but not to his lymph nodes and after surgery his PSA level came right down. Everything was fine for about six months. But then it started to rise. The consultant suggested radiotherapy so he started that in June 2011. He also went onto Zoladex (a hormone therapy).
“In December 2011 I was diagnosed with cancer of the uterus and had a hysterectomy and my ovaries removed. I feel that was fate’s way of giving me a little bit of an insight as to what Malcolm was going through. We tell people we went for ‘two-for-one’ on cancer, which shocks some people.
“After my surgery they told me I didn’t need chemotherapy, but I wanted it. I just wanted anything that would give me a better chance.”
“Malcolm’s PSA started rising again in 2013 and a bone scan found the cancer had spread to the pelvic area. They gave him bicalutamide (another type of hormone therapy) but it wasn’t working and eventually it was decided he’d have chemotherapy. Malcolm had no hesitation – never considered refusing it. We knew chemo wasn’t brilliant, but it was a question of finding what would help him live longer.”
“I would have gone along with whatever decision he made as long as it was an informed decision. So often people want their loved ones to have all the treatment they can but they don’t have to go through the horrible side effects.
“I know people have lots of different reasons for not wanting chemo and some can’t have it. However, from my experience, I struggle to understand how Stan has had such an extreme reaction against it. If it was a real life situation, I’d wonder if he’d had proper counselling about what the chemo would be like or if he’d listened. I know sometimes people struggle to take things in in a situation like this.”
“People sometimes think chemo is just chemo and it’s awful and your hair falls out and you’re vomiting, but there are so many different types.
“For Malcolm it was a minimum of six doses of docetaxel, maximum of ten and he had to go in to have it once every three weeks. He’d have the chemo on a Thursday and by the weekend he’d be in bed exhausted. Even lifting his arm was an effort. He found that very frustrating as he’s always been a practical person. And we love to walk and we couldn’t do that. The dogs were giving me terrible looks!
“Malcolm’s hair did fall out but he didn’t have nausea - he actually put weight on. It was hard going though – he used to love food but he lost his taste and in the end our favourite food was simple salmon and potatoes.
“After his sixth treatment, his PSA level started shooting up. He was showing signs of neuropathy – damage to the nerves. But at no point did he want to stop. He was determined to keep going and have the full ten treatments.”
“I decided to take long term sick leave when Malcolm started chemotherapy so I could go with him. Relationship-wise, I suppose its improved things really because I’m here all the time and we spend more time together. We might drive each other mad from time to time. It has its challenges.
“The various treatments have affected our sex life. Malcolm had a lot of nerve damage from surgery and had trouble getting an erection afterwards. He had injections to treat that and we tried a vacuum pump. You have to experiment and we did. But when he went on the hormone therapy it knocked out any desire.
“That could be a very big thing for some people. And we do miss it now and again, but it’s not the only part of a relationship. Having had my ovaries removed anyway, half the time I’d rather have a cup of tea. We cuddle a lot in bed and hold hands – we’re comfortable with that. And as Malcolm says, we did have a lot of good years!
“In December 2013 Malcolm said: 'I think we need to get married.' I said: 'Is that a proposal? I want this doing properly!' So he got on his knees. Then I asked when and he said: 'In a few weeks!'
“We got married at the registry office and had meal in the village hall – there were 96 of us and the local children were waiters. It was absolutely fantastic. And that night we raised £418 for Prostate Cancer UK. My son did a head shave as well and altogether we raised over £2,000.”
“Malcolm doesn’t go out much with the lads as it’s too uncomfortable to sit in pubs. But he’s friends with a local farmer, Roger. They often chat and Roger will ask how he’s getting on. Malcolm goes out with him in the Landrover checking the sheep and opening the gates for him. Or he goes with him to pick up a cow or to the abattoirs. Now Mal thinks he’s a farmer! But it’s a great way for him to get out and it’s a bit of normality.
“They go shooting rabbits together too. Mal’s bought himself a new car for the first time – a four wheel drive he can use for that. He was worried about spending the money but I said go and get it – enjoy it now. You can’t take it with you. So he got one with everything on – an automatic with heated seats and lumbar support.”
“Malcolm is on enzalutamide now. We’re not sure if it’s working as his PSA level went down then up again. However, it’s still lower than when he started taking it so he’s decided to carry on. We understood that was kind of the last treatment.”
“He is getting bone pain but at the moment it’s manageable. Some people think he must need morphine, but actually some of the very basic drugs help control the pain. We’ve had a Macmillan nurse who was very good at advising on that. He’s taking paracetamol, also naproxen and codeine. Sometimes he needs a tramadol at night.
“The secret is to take the pain killers regularly and not wait for the pain to come. Eventually he might need morphine but he doesn’t need it now.
“I know this is a painful cancer and I don't want him to suffer so whatever makes him comfortable is ok with me. Nothing can make it as bad as knowing I am going to lose him.”
“We’re unsure of the future. People say: ‘Oh you’ve got to stay positive.’ And it drives us mad. We’re not negative people, we’re very, very positive but we’re also realistic and we know he’s not going to survive this.
“I’m going to take my pension early to spend time with Malcolm. I finish work officially in March this year. But it messes with your head if you try to think too far ahead. The other day I was saying Malcolm needed more autumn colour in the garden and as I was putting plants in I was thinking, he might not see these next year and that made me cry. I told Malcolm and he said: ‘At least you’re watering the plants while you do it.’
“Sometimes we see things on the telly about cancer and we look at each other and just well up. But you never give up that bit of hope. We just try to take things as they come.”