‘Laughing helps you get through it’ – Rowena’s story

Rowena is 39 and has terminal cancer.

She started to worry about the fact that she didn’t have a ‘bucket list’, and wasn’t sure if she needed one. Over the last year, she’s been meeting other young people with a terminal diagnosis, to find out how they feel, and how they’re coming to terms with their prognosis.   

You can watch her journey, ‘Before I Kick the Bucket’, on BBC Wales at 10.35pm on 21st July, and then on iPlayer across the UK.

In this special column for Cancer Research UK, she tells us what she learned while making the programme.

Thoughts and fears

The first thing I learned while making the programme is that people with a terminal diagnosis share so many of the same thoughts and fears.

Speaking to people I met for the programme, we talked about relationships, and sex, and about not knowing what you are supposed to do each day.

Sometimes you want to be out there having all these experiences, and other times you might want to forget everything and just have a few drinks

On one hand, you haven’t got much time, but then on another, you might have. Not knowing timescales is hard – sometimes you feel that you wake up every morning and just take it from there.

And you have to fill the days – so what are you supposed to do about it? Treatment might take some of the time, but then what? Should you rush to do things, and say ‘yes’ to every opportunity that comes your way? Or do you just want to take things slow, and savour moments more?

Sometimes you feel that people expect you to be a certain way, and you should know what to do – but you don’t. It’s completely up to you, and those feelings can also change daily. And you’ve still got to do the daily chores and routine demands on your time– they don’t stop – life goes on. Sometimes you want to be out there having all these experiences, and other times you might want to forget everything and just have a few drinks – although I can’t actually do that, I’m not physically able to.

And we think about love and sex and normal stuff too – but that can get pretty complicated pretty quickly. Sometimes it’s best to try not to think about these things too much. That is a raw and sad reality.

And I found out that young people with a terminal diagnosis aren’t often in touch with each other. So lots of people face this alone, and it is so hard for friends and family to really understand what they are going through.

One thing I have done, that not everyone does, is that I have planned my own funeral (and you can see me taking this to quite an unusual level in the programme!) Some people may not understand this, or think it’s not right – but that’s the way I am dealing with it. It is a pretty weird thing to do, so I am not sure there is a ‘right’ way!

Appearances

People passing me in the street would not have a clue that I was ill: appearances can be deceptive, and this came out quite a bit in the programme.

There is this stereotype of what ill people should look like, especially when on cancer treatment, and people don’t quite know how to react if you don’t look like that. I feel that everyone should know more about what it is like to be terminal, especially when people look well.

It’s so hard for people to understand and, if they find out you have a terminal diagnosis, you can see them processing it in their brain while they look at you. I actually found myself doing this with the people I met too – I could see it from other people’s perspective for once! When you see them, you will understand – it’s so hard to believe that they are terminal.

Making the programme, I started noticing people’s reactions more and more, and talking to other patients it was so amazing to hear they experienced the same. And you get treated so differently when people know. For example, I get so tired, but people don’t see it.

I wish there was a way to get other people to understand more without it being a big deal

Something as normal as food shopping is hard – just going to get a few things in a supermarket is really exhausting. I feel like I hide the illness – it doesn’t feel acceptable to just sit down on the floor and rest but that is just what I want to do. I pretend I’m fine but I’m not – I feel like I’m about 80.

If you are out and about and you are feeling exhausted, you can want to scream “I’m ill!” and for people to treat you better or bring you a chair. And that can be difficult, because you don’t have the energy for that whole conversation, and you feel responsible that it might ruin their day too. I upset someone working on a checkout the other day – she asked a question and I answered, and then she was upset. That made me feel guilty.

The strange thing is that I have to tell myself I’m ill sometimes too. I can feel like I must be making it up when I look in the mirror – I see my reflection and I look so well I just can’t believe what is happening. I have to look at my PICC line to remember that it’s real.

Don’t get me wrong – I’m pleased that I look well, and want to keep that way as long as possible. But I wish there was a way to get other people to understand more without it being a big deal.

We know what’s happening to us, but we don’t want to go into it all the time.

It can be frustrating when people talk about crazy therapies too – you’d be amazed what some people suggest – sometimes they’re just ridiculous and it’s hard to stay calm when people offer them – the worst was about going to stroke dolphins as a cure.

They might be trying to help, and I appreciate that, but it can make us pretty fed up!

Hope

I know I’ve been given a terminal diagnosis, but there is always hope. Just thinking about the time I have been working on the programme, I’ve seen so much news about progress in those months.

For me, obviously I am mostly looking out for cancer news – for obvious reasons – and hearing about any new development gives me hope and makes me happy. It’s great to see that research is working, and that progress is being made.

I do think you have to be wary of headlines – they are clearly there to get your attention and you often need to put them in context, and use background knowledge to work out what they mean. I have quite a big knowledge of cancer now, but other people might not.

And I’m not under any illusions. I know that, when I read about a new discovery or treatment, it might be too late for me. I may not benefit from it, but then again… I just might.

I am on capecitabine now – that wasn’t available a decade ago, which is pretty cool. I’m grateful for it and I’m lucky it’s available. And then I read about immunotherapy and how that is developing. That is incredible.

And even if a discovery may not be a cure, it’s amazing to hear about different treatments, or things with fewer side-effects. I can’t have babies because of my treatment, and it has made relationships pretty much impossible – but maybe other people who have something like immunotherapy in the future might be able to do these things. And that is so exciting.

I think it is so important to have that momentum about research. If we didn’t read about new treatments and discoveries regularly, people would just say it’s all pointless and might stop supporting. But we need those funds more than ever – things are happening every day. And people like me might get to stay alive.

I am only alive because of research – my cancer gets used to different chemotherapy treatments and I am always trying a new drug when that happens. I want to hear about as many options as possible!

Therapy

There’s humour in the programme. We have had to put a warning about swearing, and that people might be upset by it – but it’s funny in parts too. The programme is obviously pretty hard-hitting – it is real and it shoots from the hip.

You either laugh or you won’t stop crying

You don’t expect people with these diagnoses to be making jokes, but you have to – you either laugh or you won’t stop crying. We are not having a great time, but I was glad to find out it was not just me who can be flippant, although I know that might shock people too. Laughing helps get you through it.

The programme has kept me going. I didn’t start it as therapy, but it has given me a real focus. I can’t die yet as I have been making this, and we’re looking at doing a longer hour-long version at the end of the year too. My 40th is in December and I really want to get to that. Anything else will be a bonus, but I have a room booked for a party in December.

This programme has been a real mission, and I feel it can make a real difference in talking about such a taboo subject. I think that only someone in my position could have made it. And that is what I have done.

I feel honoured to have been part of my contributors’ lives too, as it’s not an easy subject to tackle and they’ve been brave too.

I hope people like it.

Rowena

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