What matters most?

Sue

Sue is 66 years old and lives in North Wales with her husband Paul. Recently, she was diagnosed with terminal pancreatic cancer, after an initial suspicion by the medical staff of being possible ovarian Cancer.

It's been difficult for them, their children and their grandchildren to come to terms with. “I got the diagnosis on the 21st of March at Wrexham Hospital. I went to see the gynaecologist at the Shooting Star unit in Wrexham, only to be told it probably wasn't ovarian cancer. After an examination, we discussed my scan report which stated that it could possibly be something else. I was then referred to gastroenterology and I've been in their care since. They've been quite good, I must admit.”

After her diagnosis, which is very recent, Sue is now waiting for follow-up appointments and results to help plan for the future and what options will be available for her. “We're just waiting now for biopsy results to see what form of cancer it is. After that, it will be oncology to see if there is any treatment they can offer that would help prolong my life, or whether it's going to be too invasive, given the short time I've got and whether I accept chemotherapy. That’s the next big decision.” This is a decision that Sue will make along with her husband Paul.

Sue says that the cancer didn’t come as a huge shock as she knew her body and knew something was seriously wrong. “When they said that it had possibly spread to my liver. I thought ‘That’s not good.’ But my husband, ever the optimist said, oh, we'll be fine. So, I think it was more of a shock to him than it was to me. I just asked outright, ‘how long have I got?’ They couldn’t tell me specifically but he was saying months rather than years. The doctor was suggesting possibly the latter end of months. I suppose it is difficult because everybody is different, but it does help if you've got a timescale to work by. I think once I've got a date or I feel I'm deteriorating more quickly then I think that's probably when I will hit the panic button.”

Sue has her husband and her two children and grandchildren that she worries about. Telling them was hard “Still, I'm really just trying to get on with it and support the rest of the family as best I can. Really, it's hard work because you've got to be there for everybody else, you know I'm okay. It's fine. I think it's the time scale that suddenly the family can't cope with, they still need mum.”

Her husband Paul had bowel cancer previously and survived and the family had lived through it. They were open and told them about Sue’s consultation prior to the appointment.

“I think we all just assumed it will be all right, but when I told them it was terminal, and it might only be months, that was hard. It was hard for the children and for Paul as well. We've been together 50 years it's a long time. We've got an 18-year-old grandson and obviously, he could tell his dad was upset so he's been digging for answers, so he's aware now. The youngest grandchild is four. How do I tell her I have no idea? But there are plenty of books and things like that for children now which didn't used to be. The hardest part to be honest, was telling my dad, he's over in Yorkshire. He doesn't deal with death, he's lost a lot of his friends and having to tell him that was hard.”

Sue said the call with her dad was difficult, he was understandably upset, but something that she was unprepared for and hard to know how to deal with it “He was absolutely in bits. I tried to tell him ‘That’s not helping Dad, I want you to look after yourself and be all right without me having to be here worrying about you.’ So he doesn't know what to do or say you know, we’ve always had a good relationship, but I can't make it better. I can't make it go away. But no, you do have to feel you're being strong for everybody”

Trying to do things special for the family, such as days out is a huge thing for Sue while she still can. Recently she enjoyed a family trip to Gulliver's World. “I did very well, I lasted five hours walking around. I had to take my walking stick with me but it was lovely. I'm glad we got that done. But sometimes you just need a bit of space to sort of think about things and especially now with diabetes, I can't drive like a normally could. I can't just jump in the car. That was my space and by going in my car. Even if I was going to a supermarket. It just gave me time to think, this was long before I was diagnosed with cancer, that was just my little space. Now I'm chauffeur driven everywhere. I'll be quite glad if I can get back to driving my little car again.”

Sue said the call with her dad was difficult, he was understandably upset, but something that she was unprepared for and hard to know how to deal with it “He was absolutely in bits. I tried to tell him ‘That’s not helping Dad, I want you to look after yourself and be all right without me having to be here worrying about you.’ So he doesn't know what to do or say you know, we’ve always had a good relationship, but I can't make it better. I can't make it go away. But no, you do have to feel you're being strong for everybody”

Trying to do things special for the family, such as days out is a huge thing for Sue while she still can. Recently she enjoyed a family trip to Gulliver's World. “I did very well, I lasted five hours walking around. I had to take my walking stick with me but it was lovely. I'm glad we got that done. But sometimes you just need a bit of space to sort of think about things and especially now with diabetes, I can't drive like a normally could. I can't just jump in the car. That was my space and by going in my car. Even if I was going to a supermarket. It just gave me time to think, this was long before I was diagnosed with cancer, that was just my little space. Now I'm chauffeur driven everywhere. I'll be quite glad if I can get back to driving my little car again.”

The next weeks and months are going to be difficult, but Sue is also practical about the future, planning to make it easier for her family when the time comes. “With my death, I would like for it all to be over very quickly. Without the pain, without the indignity of what's to come, if I could go tomorrow that's what I want. But that's not what I'm going to get.” In planning for her death Sue has considered so much. “I just want to make the best of it, but it's these sort of things that you don't think about, you know, somebody dies suddenly it's awful, but it's done and people suddenly have to get on with things but when you know you're going to die they’re things you feel you have got to do, like stupid little things. I bought keepsakes for everybody just little mementos to remember me. Everyone says you've got plenty of time for that and I hadn't, so in a panic I wanted to get them done. They're all done and wrapped. My grandson will be 18 in September. I got his present. I’ve got his card. It's sorted and then there's Paul.”

The worry over Paul and her family are big things that Sue is dealing with emotionally and trying to find solutions whilst she can. “Where is Paul going to live? He can't manage this place on his own it's a two-man job and we're both getting older anyway. So we must sell and leave. It is hard, this place, the love, where we made memories, you know, so that's upsetting for me. It's that sort of thing like I say if you go suddenly you've not got time to think about it so it doesn't matter to you, but when you do know you've got a limited time. There's so much you have to sort out whether it be legal documents, or financial letters to write. It is hard work. It is very hard work but I'm a great believer in when your numbers up, your numbers up. All you can do is make the most of the time you've got and look after you and your family and make sure they're ok. I'm even thinking about where I'm going to rehome the chickens and my giant fish because Paul will forget to feed them. So, it might seem like trivial stupid little things to people. Little things that matter to you matter even more when you know you're not going to be around there to sort it out.”

This is something that Sue thinks about a lot, how to make her death easier for her family.

“Thinking about reassuring everyone is really exhausting but I think it's just something that you do because it is harder for them. I am going to be gone and they're going to be left with the grief.” Even little things are on Sue’s mind such as “The fact that I am not going to be there to say where the soap powder is and how to put the washing machine on. Even Silly little things like the way Paul shuts the curtains, he doesn't make them hang nice or straighten them. He leaves them in a mess and he does it every night. It's just me who ties them up. So, when I'm gone, they'll still be crumpled. It'll be a memory for him.” Her reasoning behind her thoughts and the way she looks after her family to make it as easy as possible for them is Sue’s way of protecting herself somewhat too. “I think in a way by me supporting other people, I'm supporting myself. It's not a barrier I'm putting up but if I haven't got to think about myself, it's taking a bit of the pressure off I think if I know they're going to be alright, I'll be alright.”

Dealing with her medical appointments has been a bit of a whirlwind. Getting the diagnosis has been difficult and understanding the processes and medical side brings its own complications. “One of the doctors said ‘Right, you've got cancer of the pancreas. I'm so sorry, there's nothing we can do about it.’ My first question is why? You can do something about breast cancer, ovarian cancer, and throat cancer, why can't you do something about this? They do their best to try and explain. I mean, I had no idea that it was responsible for the insulin, etc. This is all stuff I've had to find out for myself. But it is jargon to people. I think, if they could make it simpler, even if it's just getting a piece of paper and scribbling, this is what that looks like and we can't do this because it's hidden behind here, or we can't access it here etc., it will make it a lot simpler. I think, to be fair, on the initial diagnosis, he kept it as simple as possible, because obviously, it was a big shock.”

To add to the lack of understanding and clarity in appointments Sue found the talk of her death and the mechanics of what will happen non-existent. It is not everyone that may want to know but some do and it's important to be able to have those difficult conversations. “It is a bit of a minefield. Especially when they don't explain how you're going to die. Nobody seems to want to cover that subject. I have asked about how I will die, I asked will it be because my livers or kidneys are going to pack in and they're just sort of shaking their head or whatever, then just say, ‘Well, your body is just going to get worn out.’ I just want to know how these stages are going to happen.”

To add to the lack of understanding and clarity in appointments Sue found the talk of her death and the mechanics of what will happen non-existent. It is not everyone that may want to know but some do and it's important to be able to have those difficult conversations. “It is a bit of a minefield. Especially when they don't explain how you're going to die. Nobody seems to want to cover that subject. I have asked about how I will die, I asked will it be because my livers or kidneys are going to pack in and they're just sort of shaking their head or whatever, then just say, ‘Well, your body is just going to get worn out.’ I just want to know how these stages are going to happen.”

Knowing how the disease will progress would help Sue understand the stages of her disease and what to expect as much as she can. Waiting and not knowing if any new pain or niggle will be the start of a decline or is non-related is hard for her to deal with “It will be nice if they could be a bit more forthright. I mean, some people can't handle that, but for me, I'm an organised person. I like to put things in boxes and I like to know what's happening. When, why, where, I know it's not a precise science, but if I'm going to end up on a bed doped up to the eyeballs in morphine or whatever, because I'm in pain. I'm going to want to know about it and what is actually physically happening to me.”

Her referral to palliative care has come through but it's not something she feels she can use yet. Her need to talk to someone about her diagnosis has been left wanting by all departments “It was a relief to be referred to palliative care and they have phoned me just to let me know I'm on their books, but, they can't come and see me and have a chat because they're so thin on the ground. They're just dealing with emergencies only. If I have any real concerns or just want somebody to talk to who knows what they're talking about, I am struggling, I'm not really classed as an emergency until I'm on that deathbed.”

The need for someone to talk to who understands medically is important for her but Sue has found she is just shuffled from one professional to another. “It is sad because there must be 1000s of people who will need that one-to-one conversation and just to know that there is somebody out there at the moment. I've got no one person to go to. The palliative care people say I'm not an emergency. So speak to my GP, and he says ‘You know you're seeing so many medical people, you don't need to see me.’ Then they say, speak to a district nurse but I'm not registered with a district nurse yet. At the moment, I feel as if I'm scrambling around just trying to find someone to talk to.”

Like many Sue would just like to have the right access to support to have her questions answered and know where to turn for the right advice. “I just want to know that if I get a symptom where and when do I get the medication, can I have general things ready in the house that may help such as for nausea so it's there ready for when I need it, it’s just me being organized. If the tablets are there, and I'm feeling sick, I don't have to bother anybody, I can just take them. It's just been that feeling of insecurity at the moment. I think we're now getting to a level where my GP will be the first port of call. They are monitoring my blood pressure and blood sugar levels at the moment. But both of us would like to feel secure in the care and support as to what happens when and who is going to look after me?”

Nightingale House Hospice will also offer support in a safe space for Sue to go and relax, and maybe try out some relaxing alternative therapies Sue has requested. “They're not going to be responsible for my palliative care, but for my end-of-life care. I don't want to die here. This is home, this is happy. I don't want it to be sad.” The good thing for Sue is that the hospice has counsellors so that if the family do decide they need it they have somewhere to turn but she also knows that they will all lean on each other for support.

The need for having someone to talk to is so important for both the family and her. It’s a taboo subject, dying, it is a difficult subject for many to open up about and Sue understands this. Talking with her closest friend has been a tonic despite the emotions that have come along with her diagnosis “She's upset because she doesn't know what to do but there's nothing she can do. I just want her to carry on being my friend. That’s how it is with us. We don't mention it. Again, people don't know what to say. It was always the big taboo, wasn't it? I would have thought that it would be a lot better now, there's more understanding about cancer, and more people have it. More people know about it. But there's still that stigma.”

Nightingale House Hospice will also offer support in a safe space for Sue to go and relax, and maybe try out some relaxing alternative therapies Sue has requested. “They're not going to be responsible for my palliative care, but for my end-of-life care. I don't want to die here. This is home, this is happy. I don't want it to be sad.” The good thing for Sue is that the hospice has counsellors so that if the family do decide they need it they have somewhere to turn but she also knows that they will all lean on each other for support.

The need for having someone to talk to is so important for both the family and her. It’s a taboo subject, dying, it is a difficult subject for many to open up about and Sue understands this. Talking with her closest friend has been a tonic despite the emotions that have come along with her diagnosis “She's upset because she doesn't know what to do but there's nothing she can do. I just want her to carry on being my friend. That’s how it is with us. We don't mention it. Again, people don't know what to say. It was always the big taboo, wasn't it? I would have thought that it would be a lot better now, there's more understanding about cancer, and more people have it. More people know about it. But there's still that stigma.”

Within the medical world, Sue would like people to know that there is always a person behind the medical diagnosis. That the person has a life and loved ones and the news is going to change everything for them. “We’re not a medical statistic. Take the time to explain. Just be patient and if they need a bit longer for it to sink in, then let them have a bit of time for it to sink in. Maybe have a quiet room a quiet space. If they've got any questions, they want to ask they can ask them there and then rather than go home and think about it

A diagnosis is a big shock. Don't assume that they know what's wrong with them and what's going to happen to them. Take your time. Explain as simply and directly as you can.”

Sue is pragmatic about her life and has tried to be as organized as she can be for the sake of her family. Needing them to be ok and able to move forward without her. She knows its difficult for everyone around her, and of course herself. “I think rather than be remembered, I'd rather not be forgotten if you know what I mean. I'm not a religious person at all but I do slightly believe in reincarnation, I’d like to come back as a dog maybe, we have always loved out dogs, but ultimately I’d just like to be at the back of somebody's mind. In a nice way. Yeah, I think that'll do.”

In loving memory of Sue (1956 - 2023)

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Nightingale House Hospice provides specialist palliative care services for those with life-limiting illnesses. Their services are completely free-of-charge, to patients and their families across the catchment area stretching from Wrexham, Flintshire and East Denbighshire to Barmouth and the border towns including Oswestry and Whitchurch.

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Source: https://nightingalehouse.co.uk

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