Patricia's Dying Matters Awareness Week story

Now in her 80s, Patricia Macleod has made her way to our interview room, tucked in amongst some offices at North London Hospice in North Finchley. We’ve heard that Patricia often requires oxygen, and might not be able to leave her room – but today she’s in good spirits and is mobile.

By her own account, Patricia has led a highly interesting and varied life. A mother to four, and someone with a ‘variety’ of friends, she’s always enjoyed her work – which has ranged from being a medical secretary to running an art department, and managing a creche. In her spare time, she would keep herself busy with play reading groups, pilates, yoga – “anything with a bit of diversity!” she says. 

Upbeat, and with a twinkle in her eye, Patricia describes herself as “stoic and brave, quite outspoken, and good for my age!” 

But Patricia has been diagnosed with an incurable illness – which she knows she will eventually die from. She’s keen to share her experience of the diagnosis, and use of language, for Dying Matters Awareness Week. 

She says that the process of being told that she was terminally ill all felt very ‘straightforward’:

“As soon as I was called to see a respiratory consultant, from having seen my GP, I had an idea that something was amiss. When she said I had a node and the Macmillan nurses were sitting there next to me, I thought, oh, well... I can see how they work it. 

“They're talking to you all the time, while gradually getting down the stairs to have your blood test done, to moving you along, so you don't have time to sit down. So I think that was very well done.”

Patricia describes her initial feelings when she received the bad news:

“My immediate reaction was annoyance. Annoyed, not depressed and not scared. Annoyed. And all right, let's see what we can do at that stage. I didn't know it was terminal. That wasn't the time for me to know that it wasn’t treatable. There were options. 

“I had some radiotherapy which didn't agree with me. I was offered chemo, which I decided if it's going to give me a few more miserable months, I didn't want, so I opted not to go for it.

“I didn't know it was stage four, but maybe that was told to me the next time that we met up with the oncologist.

“I was quite happy that they didn't tell me straight away, because they said there were some tests they could do on certain cancers, that were susceptible to a certain treatment.”

But Patricia says that only later was she told that her illness wasn’t going to be treatable at all.
 

• READ: Why John decided against palliative chemotherapy

It was at this point that Patricia’s outspokenness helped her direct the conversation in a new, more direct way with her Oncologist (cancer specialist) – to somewhat of a surprise reaction:

“I asked the oncologist, ‘well, how long have I got?’ At which point he said, ‘people don't usually ask me that.’ I said, ‘I'm asking.’ 

Patrica said that she was surprised at the doctor’s reaction to her question:

“He said, because most people don't want to know, that I was very brave. Which I thought, I don't know if that's brave or not. Does it really matter? It's just a word. That's what I was anyway. I was quite happy with that answer. But I did say I was surprised that more people didn't want to know.

“The doctor said that with chemo, I had maybe seven, eight months, and without it, maybe three or four, but that they weren’t sure. 

“Well, I mean that three or four months is gone now, but then I understand that it's not easy. It depends where the cancer’s travelling and what it's doing, if it hits my brain or my heart or whatever it is it's doing, but at the moment I'm okay.

“The main thing is I'm being told that I will not suffer because I think the suffering, really bad pain, I wouldn't be interested in that. But so far so good.”

Sharing her wishes – that she doesn’t want any further treatment – with her friends and family, is something that Patricia says she doesn’t find that difficult:

“I've done it so many times with them and had to persuade them that this is what I want to do, getting them to understand what I want…certain people would want me to do anything and everything to prolong the length of my life. I really had thought about it quite a lot and was quite determined that's what I wanted to do.”

It was the thought of quality over quantity that Patricia based her decision on – she didn’t want to extend her life simply for the sake of it:

“For me, radiotherapy was bad enough, bad reaction, the chemo. I don't want to be feeling nauseous and sick for a few more months. And in my 80s, really, my children have had me long enough. It's not like I'm in my forties or fifties. I expected to go sometime during this decade."

Patricia reflects on whether she felt that she had been given enough information about her outlook, at the right times, by her doctor:

“I felt I got as much information as was possible. It's almost impossible to predict exactly the way that a particular cancer is going. So I did feel that I got sufficient information from him, as much as he could possibly let me have. 

“And going forward with the further conversations with nurses and palliative care nurses, they all kind of backed that up, saying it really was very difficult to say. There's no precise day on which this is going to happen.” 

So, did Patricia feel satisfied with the information that she’d been given? She says yes, “he'd done his best.”

A very common word used to describe someone’s experience with cancer, is the word, ‘battle’. Patricia says it’s not something she agrees with:

“I don't like the word ‘battle’ because it tends to suggest that you've tried and you've lost. It's not a question of losing. This thing takes you and it's not a battle. As I said, it tends to suggest that you're a failure because you've lost the battle and that's not what it's about at all.”

What about using the ‘right’ language to talk about death and dying?

“I think it must be very difficult for doctors to do that,” adds Patricia, “but I think they should really try.”

But she also reflects that it can’t be easy for healthcare professionals, on the whole, to get the language right every time:

“I understand how difficult it is for them because what suits one doesn't suit another. That's the problem. We're individuals, so they have to try and gauge what their answer is. 

We ask her what she thinks about using more indirect, ‘euphemistic’ language about death and dying. 

“Do I think that it's being dressed up? Personally I don't. But then did I?... Maybe before I knew what I knew about my own body. I suppose people do use things like passing or gone to a better place. In fact, some of the things are ridiculous. Going up with the fairies in the sky! Well, I think it's just all avoidance, really, to pretty it up. You can't blame people.”

Patricia believes that a more honest, direct approach to language around death and dying would, allow everyone to process dying so much better:

“I do think just to use the word dying is better than all these euphemisms. It would get things a bit more direct and more connected, helping us having better conversations, and not skirting around it.”

Patricia adds that in her experience, it’s always turned out better when being open and honest with friends and family about her future:

“I said, well, I'm dying. I'm dying in a few months or a few weeks, I don't know. But it makes a better conversation once you got through that. It would be helpful to use that word more often, amongst friends and acquaintances alike. 

She also prefers turning the negatives of the situation into positives:

“For me, I’d like to be able to say, well, look, I'm not sure how many weeks I've got to live but why don't you come over for a cup of tea? You've never come into my little cottage. Come into my doll's house, come and see how I live!’, that kind of thing. Which is kind of more positive than, ‘this is where I'm going to die.’ I mean, I might die in there, I might not, I don't know.”

Part of her personal philosophy around the end of life is Patricia’s belief that families’ decisions should be respected by everyone:

“My son lives in Tallahassee, and he's not coming over to see me. But he's been given reasons why he should, by people he works with, which I think is very unfair. 

“He doesn't want to come over. I don't want him to come over. I want him to remember me at the wedding! I don't want him coming over 3,000 or 5,000 miles to sit and look at me and say, okay, so you're dying. Nice knowing you, bye bye. 

“What's the point of that? And yet people are saying, well, if it was my mother, I would be this and I would be that. And I just find that very unkind and unnecessary. 

“I said, you just have to tell them this is our decision. It's what you want to do. It’s what I want to do, not what they have processed and decided what they think you should do. It's very relevant to the way I feel. And you should just say, ‘my mother is dying and I'm not going to see her because that's what we want.’

We asked Patricia if she had any advice for people in a similar situation – and whether there are any things she had learned along the way, or given her strength on her journey. She says that when someone has had a diagnosis of an incurable illness, there is just one thing they have to remember to do: to live in the moment.

“Enjoy every little thing that you can enjoy, whether it's looking at a bluebell coming out, or a daffodil or enjoying something nice to eat in between your bouts of nausea or whatever. You have to live in the moment. For me it was putting my coal fire on, and turning on the lights at night, to light up my little cottage, those sorts of things. 

“Live in the moment whenever possible…enjoy the feel of a clean sheet, anything! Enjoy the moment – especially if you're not in physical pain.”

Thank you to Patricia for sharing her story for Dying Matters Awareness Week.