I always say nothing is off limits
If you’re going to talk about your story and the issues around dementia and cancer, there’s no point doing it if you’re not going to be honest.
What are people going to learn if I’m not telling it as it is?
That’s really why I do it. I want things to be better for other people.
I live in South Wales with my partner Bernard. I’m 69 and will turn 70 this summer. I have a son, Daniel, and I’ve recently become a grandfather.
A lot of my work now is around dementia, patient-centred care, palliative care and helping healthcare professionals understand what life is really like for people living with dementia.
I have vascular dementia. I’ve been living with it for around 11 years. I also have a blood cancer, which came about by accident, and more recently I was diagnosed with prostate cancer after regular checks showed my PSA levels had gone up.
So I’ve had to contemplate my own mortality more than once. One, because I’ve got cancer. And two, because I’ve got dementia.
This is how it started for me.
My blood cancer came first
My blood cancer was discovered by accident and has been actively monitored. Following my latest blood test, my consultant has changed his diagnosis from large granular lymphocytic (LGL) leukaemia to chronic lymphocytic (CLL) leukaemia.
I have looked this up on the Macmillan website, which was very informative. Much better than the information I was able to get from the doctor.
My second cancer is more recent.
We have prostate cancer in the family, so I go for regular prostate checks. I had one test and it was all clear. Then I went again and the PSA levels had gone up and I was diagnosed with prostate cancer.
I’ve recently had an intensive course of radiotherapy to treat the prostate cancer.
It was ironic really, because I said to Bernard, “You’re getting on now, perhaps you ought to go just in case.” He said no at first, but I encouraged him to go. He tested positive too, so we’ve both been through the same treatment.
Cancer and Dementia feel very different
With my cancer diagnosis, I spoke to my GP and they could answer clinical questions. They could explain options, what might happen next and how treatment could work.
That was it.
With dementia, it felt very different. When I was diagnosed, there was no follow-up. There was no post-diagnosis counselling. I was just told I had it, there was no cure, and to go home and wait.
There were no answers about how quickly it would develop. And dementia is different for everybody.
At that point I didn’t have a clue what was going to happen. I asked about prognosis and was told not to worry because I wouldn’t know anything about it by that stage anyway. I went into a three-month depression.
Like many people, I went online looking for answers. That didn’t help. It made everything feel more frightening.
That’s why I think people need much better support after a dementia diagnosis. They need information, but they also need emotional support. They need someone to explain things.
Dementia is a journey
With vascular dementia, it’s a bit like a dartboard. You don’t know where the next TIA (mini-stroke), or oxygen starvation because of blood supply issues, is going to happen.
For me, it has affected the front and back of the brain. That means I have some deafness, and it affects planning, judgement and social filters. I am noticing those filters eroding. Sometimes I can still think of the word I want, but I know when I’m saying it that it isn’t the right one.
People often have myths about dementia. They think if you’ve got dementia, you look like someone with dementia or behave like someone with dementia. You don’t.
Dementia is different for everybody.
“You’re the same person the day after diagnosis as you were the day before.”
There are things that can help too. I talk to people with dementia and carers about diet, smoking, alcohol, exercise, staying social and going out and talking to people. I’m not going to cure it with non-invasive things, but I do think they can help.
I nearly stopped radiotherapy after two sessions
For the prostate cancer, I had a month of intensive radiotherapy at Velindre Cancer Centre in Cardiff.
It’s probably the most dementia-friendly hospital I’ve ever been in. But even there, after two of my 20 treatments, I said I couldn’t do any more.
During radiotherapy, you’re left in a big room with all this equipment on your own. Clearly the radiation would damage the radiologist, so they have to leave you. But when they leave you, you don’t know they’re coming back.
You think silly things, although I know now they’re common thoughts. If it goes quiet, it feels like they’ve all gone home and you’re locked in there.
After two treatments, I said I wasn’t going to complete the treatment.
I had time with the consultant radiologist and other staff who explained everything to me.
From then on, my confidence increased a thousand-fold and I was able to complete the treatment. Otherwise, I wouldn’t have been able to do it.
That’s why communication matters so much. It doesn’t matter what your job is in a hospital. You need to understand how people might be feeling.
What matters most to me in hospital is feeling safe.
I do a lecture called What Matters to Me? At the end of one session, a nursing student asked me: “If you could describe in one word what matters to you in hospital, what would it be?”
I couldn’t answer straight away. Then suddenly it came to me. One word. Probably the most important word.
“Safe.”
If you feel safe, it’s because you’re being treated with compassion and empathy.
You’re made to feel safe as you would in your own home.
But whether you feel safe can vary depending on who you come into contact with, what ward you’re on, or even what clinic you go to.
Some hospitals are incredible. Some wards or clinics are not. Even within the same hospital, one ward might be awful and another might be really good.
And if you ask a question and someone rolls their eyes at you, you notice.
People with dementia are often very good at reading non-verbal communication. Tone of voice, facial expressions and body language all matter.
Asking questions can get you labelled difficult
I’m not afraid of doctors in particular. People often are, but I’m not. That probably means I ask more questions than some people with dementia might feel able to ask.
I went into hospital once after knocking myself out. They didn’t know how long I’d been unconscious for. I’d fallen outside on the drive, doing something I shouldn’t have been doing.
Because I asked questions, I think I was unnecessarily labelled as an awkward patient. I hear that a lot.
People who haven’t had training in dementia don’t always know how to handle conversations with people with dementia.
There are simple things that help. Don’t assume the person will remember you because they saw you an hour earlier. You may need to introduce yourself again.
Remember dementia is a journey. It’s not that you don’t have it today and tomorrow you have full-blown dementia. And don’t make assumptions.
A&E can be terrifying
I do dementia training with paramedics and emergency responders in Wales. The ambulance staff are well trained. I know that when I get into an ambulance, I’m going to have incredible treatment. But when I’m taken from the ambulance into A&E, it can feel awful.
For someone with dementia, or any mental health problem, A&E can feel overwhelming.
It’s noisy. The lighting is bright. Staff shout to each another. There can be people who are distressed.
The last time I was taken into A&E, something happened nearby that left me absolutely petrified. Because of my blood disorder, I have to be careful about infection, and I didn’t feel safe.
I asked to see the nurse in charge. I said I wanted to discharge myself. She told me I was too ill to leave, and I asked her to do something about the situation. Eventually, she did.
But I’m more confident because of the work I do. I worry about people who don’t feel able to ask.
That’s why I think we should say when things go wrong. If we don’t tell people, they won’t learn the lessons and get it right next time for someone else. But also, when they treat you well, tell them.
Tell them they’re getting it right. Tell them when something is brilliant. I don’t do it anonymously. I give my name, because I want them to know what made a difference.
Small things can make care better
At Velindre, it wasn’t only the consultant who helped. The administrators helped too.
It’s a big hospital with different machines in different wings. You might be told to go to a certain clinic, and if you’re confused, that can feel overwhelming. They could see I was confused and helped me.
Small practrical changes can make spaces easier for people with dementia:
- Hospital signage needs more attention.
- Some people with dementia can’t see certain colours properly. For example, a black carpet may look like a hole in the ground to someone with Lewy body dementia, and there is no convincing them it isn’t.
- Using colour on walls and putting up pictures can help make spaces feel more relaxing.
Some clinics I’ve been to also keep a comments book. It’s not official, but you can write good or bad things in it and add your name if you want to. I think that’s lovely, because that’s feedback.
