After various treatments at a London hospital, he was told in June 2018 there wasn’t anything else that could be done, and he was put in touch with St Helena. Six weeks later, Ryan married the love of his life, Danielle, and they spent their remaining months together making memories. They were together at The Hospice when Ryan died in May 2019 shortly after his 25th birthday. Danielle tells their story…
We met at college when we were 16. He was two weeks older than me, born on valentine’s day. We got engaged in May 2018 and quite soon after he was told the cancer was terminal. It was his big wish for us to get married and the doctors encouraged us to just do it while he felt well. So we got married in July, six weeks later.
We had to plan a wedding very quick but it went really, really well, and it was everything we would ever want. All our friends and family chipped in with different services: we had a friend who’s a hairdresser; a seamstress who could do my dress; even the venue, because it was July and peak summer season for weddings, a family friend had a lovely old house in the country and said we could use it for the wedding.
So getting engaged and married was very quick and was the big thing we wanted to do, and I’m very happy we got to do that. He was still able to dance. It was just perfect timing.
Ryan had symptoms that started around Christmas 2016. He started to have a little bit of pain in his stomach and he thought it was just stress. In the space of nine months between that starting and diagnosis, he went to the doctor quite a bit. It got to the point when every time he would eat he was in excruciating pain. Then he got a big lump on his neck that came overnight and became almost tennis ball size very, very quickly. When it came out, he went to the walk in centre and that’s when it all started to get investigated. Then it was all very quick.
Because he was so young, it wasn’t expected to be something like that. We went to see an oncologist who confirmed it was a type of cancer, but knew straight away it was rare cancer in how it was presenting. Ryan was sent to a specialist team at a hospital in London and it felt like a long time, but it was probably only a week or so. You’re told it’s cancer and you’re waiting for treatment to start, but they couldn’t start until they knew exactly what sort it was. It was finally diagnosed as myeloid sarcoma and he was given the chance to move to another London hospital where there was a young person’s ward.
It all happened very quickly; we were told it was cancer and then had to deal with all the other stuff, the treatment. It’s a bit of a whirlwind. It was only about six months before we were told it was terminal.
I think we were both frightened. You could see his tumours, especially in his neck. After each treatment - he had chemo, radiotherapy and a bone marrow transplant - it would shrink really quickly so it was very responsive, but it would come back again, you could see it coming back. I think although it was hard to be told it, we kind of knew already at that point. I think it’s hard because there’s a little bit of hope in you that it’s not there.
We went on a break away, which is when we got engaged, and that was the best time for us because Ryan was off treatment at that point; he’d had a bone marrow transplant and the tumours had really shrunk. It was a bit of limbo but we could forget about it because he wasn’t having any symptoms. As soon as the tumours shrunk he felt so much better because they weren’t there.
But quite soon after that, he felt them come back. Because it was quite an aggressive cancer, it just came back so quickly. I think it was only six to eight weeks after the bone marrow transplant. They’d said the bone marrow transplant was the last option we could have for treatment. So as soon as the tumours were back, that’s when we knew.
We went on loads of mini breaks around the UK and in September the doctor said he was well enough to go to Italy. We’d planned the year before to go because my family live out there, my grandma and cousins, and he’d never gone out to meet them so that was something we wanted to do. The doctor said ‘book your flights’ and encouraged us.
Ryan and I were a bit nervous – it’s quite scary going out to another country when you’re not well.
He felt really well when he was out there with the sunshine and holiday feeling, so we were really glad we did that.
Quite scary to think he was well when we went in September and then at Christmas he was really, really poorly. It just switched really quickly but I had a year off work and we’re glad we did all that stuff in that time. I wouldn’t have changed it, it was really nice; it was like being in a little bubble where you obviously know he’s ill but you can kind of shut it off and do nice trips. We did a lot in a year that would take us several years normally because we had the whole year to do it.
We did lots of little projects like making our wedding album with the photos, and Ryan started making a scrap book as a gift to me. He’d actually kept loads of bits since we met of all things like tickets for places we’d been, and he’d printed out loads of photos, but because he was quite poorly he wasn’t able to do much, so we made it a project to do together. It’s nice because it’s not just photos, it’s things that we’ve collected and he’d just stashed them away for ages.
It was kind of a balance; on days when he didn’t feel as well we’d stay in and do bits like that, and we’d go out when he did feel well. We didn’t quite manage to finish it, but that’s my project to finish now. It’s nice to focus and look back on it, I’ve found it hard to do so far but I think it will be comforting to be able to do that.
Just before Christmas 2018 he got really poorly. They said now is the time to use hospice services as much as possible, and they put us in touch with St Helena. He wanted to stay at home so the Hospice in the Home team came out to support him. He stayed at home from December 2018 when he was really poorly to the beginning of May 2019, so it was quite a long time that St Helena supported him at home which was really nice.
The occupational therapists worked with me because they knew I was an OT too. Rather than coming in saying you’ll need this, this and this, they said ‘what do you think Ryan will need?’ So that gave us a chance to talk. They did bring some equipment but Ryan was quite strong-willed and didn’t want much, just a chair and some little things to help him. He had a shower chair on wheels so he could sit and preserve energy. He didn’t want much, but they did talk to us about what he might need.
We’d had discussions because our bedroom was upstairs. When Ryan came out of hospital after Christmas he was quite poorly and he couldn’t really walk very much. That first night he wanted to go upstairs to our bedroom but he was very weak and it took my brothers each side to help him up. But the night after, he shocked everyone and just walked up there. Until he went to The Hospice in May, he was going up and down to the bedroom. He was very strong-willed and didn’t want to give in staying downstairs with lots of equipment. It was quite incredible really because he was so weak and frail, that he managed to do it.
People have asked me if it was hard taking care of him, but I didn’t feel it was. It was a natural thing that I wanted to do for him. He wanted me to look after him and I think that was the main thing; he just wanted to be at home and be cared for by me.
Naturally I wanted to look after him. Never at any point did I find it hard. His regular hospice nurse, Liz, would come out every couple of weeks to make sure everything was ok and she was in regular contact on the phone.
The only thing was the pain because there was not much I could do, so having St Helena on the other end of the phone was really good. If he was in pain, I could just call and get someone out or get advice over the phone. That was when I felt the most helpless because there’s not much you can do. There were a couple of occasions in the middle of the night where he suddenly got these sharp pains and there was nothing that we had that could control it, so SinglePoint gave advice.
He got to a point where the pain started to get so bad. Because he had the tumour in his neck he was struggling to swallow tablets. He’d had injections and patches, but around January/February his pain wasn’t being managed by that anymore. That was hard because he wanted to stay at home but was in too much pain. So then he was ready to go in The Hospice for symptom management, but because they knew he wanted to stay at home they suggested a syringe driver and it made such a difference. He was so happy because he could stay at home and the pain was controlled again.
One night the syringe driver had popped out and was beeping. SinglePoint came out and turned it off straight away, otherwise we would have had a whole night with no painkiller and beeping going on. It was really handy to have them on the end of the phone and for them to just pop out whenever.
In the middle of the night you felt like you couldn’t do anything. Ryan was quite frail at that point and I couldn’t just put him in the car. I think it was the incredible pain that frightened us.
Coming from a caring background being able to help him around the house, helping him to walk, didn’t really phase me. It was mostly the pain that was scary. You just don’t know what you can do.
The Hospice told him he was welcome to go in but because they had made so many provisions for him to stay at home, I think he felt very supported by them. He always felt he could speak with them and they would support what he wanted. We’d had conversations and the syringe driver had given him months of feeling without pain. As the disease progressed, he started to feel much weaker he wanted to value the time that we had, so he said it would be nice if he could go in and have symptom control and manage it again, but also to give us the time to do things together as he had much more increasing needs as the days went on. I said it was his choice, whatever he wanted.
We’d been on a little trip away again just the week before he went into The Hospice. That was really hard to know what to do, but the nurses said to Ryan ‘if you feel able to go, then go’. We’d planned the trip before he became as ill as he was. It was a spa hotel and we used it as time to relax and time for the two of us. We got room service for every meal and he even felt well enough on the last day to go and have a drink in the bar, so that worked out well in the end and gave him a chance to rest. While we were there we discussed it and he said ‘once we get back, I’d like to go in’.
He went in to The Hospice for symptom control on the Saturday morning and because he felt quite well, we went out to my parents’ house and his mum and brother met us there for a takeaway afternoon tea from a hotel for his mum’s birthday, and we just relaxed.
We went back to The Hospice to stay for the evening and then on Sunday it was the day of the St Helena fundraiser and I was going to pop along to support it with my family while Ryan stayed there, but before I left he said ‘I feel like I could come with you’. It was really cold and he was all wrapped up and it was nice that we could all go. We got to spend time with all of our family.
In the afternoon we went to his mum’s and she did a little get together with some friends and he enjoyed sitting back and watching everyone.
I’ve always found The Hospice quite peaceful. It was a nice environment to be in because we had a lot of support and there are nice memories there. We still got to spend time together, even spending time together in the room just watching tv.
Having St Helena’s support meant we didn’t have to worry about all the other stuff; being able to just focus on spending time together was the nicest thing. I remember Ryan enjoying the sensory bath there. It’s just little things like that. Nothing in particular, just remembering the nice times that we had spending time together.
I stayed there every night on a little pop up bed. He was only in there five days I think, which was really nice because that was exactly his wishes. He wanted to stay at home as long as possible but I think he wanted to be in there for the end. I thought how comfortable The Hospice made him and how accommodating they were to any requests we had.
He did start to go downhill on the Monday. I think I was in a bit of denial because he had periods were he’d go downhill and come back up again, so I was in denial that it was imminent because of the amount of times we’d been told that was it, then he’d come back up and he’d be ok. I remember the doctor doing the rounds and saying ‘he is very poorly now’. I knew he was very poorly but you don’t think it’s going to be straight away.
The weekend before he died he had seen my family who had travelled down to see him, and our dogs, who he adored, along with his family. He made such an effort to spend time with us all and enjoy the weekend.
We all spent time with him whilst he rested, chatting and playing music even joking together which I know he would have loved to have seen.
Obviously at the time we didn't know that was his last night, but his family then left after a nice day, and I remember just lying there watching him sleeping. We had mood lighting on and it was peaceful. I remember messaging family and friends whilst I lay there all evening, knowing the time we had left together would not be long.
When we both finally settled in for the evening, we kissed and said we loved each other, then went to sleep.
His death was peaceful. We were both asleep together, when I suddenly woke in the early hours of the morning to check on Ryan, but I cannot explain why. That's when I immediately knew he had gone. He looked so peaceful, and although completely heartbroken, I felt strangely calm and a part of me felt peaceful too.
Although I wished I could hold onto him forever, looking back, it happened in the best way for us both.
The staff were so calm, professional and comforting when I told them, and afterwards giving me cups of tea, ringing family for me, and giving us as much time as we needed to spend with him. I just remember it being pitch black to then watching the sunrise and it suddenly being morning. The follow up with giving me time to pick up his clothes and belongings, and supporting with what happens next with a meeting with a nurse and ongoing bereavement support. All invaluable support.
I think… just really, why us? I think because Ryan was so positive all the time… it really helps because he was very positive all the time. After the wedding he said ‘I’m happy’ and we kept on doing more. That positive attitude really helped. Just knowing he felt fulfilled that he’d done all he wanted.
I had bereavement support from St Helena quite soon after. It’s really hard because as a family you’re all grieving; Ryan was a different relation to all of us and we all grieve in different ways, so that’s why having someone who is impartial to it all is really helpful. I am really close to his family and he was really close to mine. It’s just different having someone impartial that you can just open up to.
I keep myself busy with work and things like that. I’m aware I can’t just bury it and forget about it which is why I’ve had the bereavement sessions. My friends are very good; we have a very close group of friends which is really nice because we can talk openly. I’m really comfortable talking about it and it’s really just the deeper, rawer, things that are harder.
Day to day I think I’m coping quite well but it could be something that sets you off. It’s because Ryan was always positive. One of the nurses said to me after Ryan died, ‘what would Ryan say, what would Ryan do?’ And he would want me to carry on. That was almost like a little phrase he used to use. We would go to fortnightly clinics at the hospital before that Christmas and because he had a reduced immune system, we would have to go on hospital transport on the mini buses which would take three hours sometimes. It got to the point when we thought is there any point in keep going because it would always be bad news and there wasn’t anything else they were going to say. But after everything, he used to say ‘ah, we’ll carry on’ which was incredible really. I don’t know if I would have the same will power as he did.
Last year I just wanted to do nice things, keep busy, just spend time with my family and friends. But this year I wanted to look a bit further into the future and try to achieve some goals that we planned together and doing them as we would have. Having Ryan in mind always helps.
I went back to work as an occupational therapist quite soon after Ryan died just because I felt I didn’t want to be sat around, and I wanted a focus. It did actually really help me.
In the beginning I really struggled to spend time on my own but now it’s getting easier. I was Ryan’s carer solidly for that year as well as his girlfriend, wife, and we weren’t really apart from each other for that long, so afterwards I struggled to adapt with that initially. I’m trying to make myself spend more time on my own and I’m much happier spending time on my own now and trying to relax.
Ryan was passionate about fundraising for the charities who helped us, and we also wanted to support St Helena which adds to my and my friends and family’s drive to raise money now, because that’s what he wanted.
I will always be grateful to St Helena for supporting us in a dignified and individual way that let me continue to be involved in caring for Ryan as we both wanted, but giving us the extra helping hands so we could continue to spend invaluable time together. This also allowed me to start grieving even when Ryan was still with me. I will always treasure the happy memories we made and feel grateful for the time we had together. I take great comfort knowing that Ryan said he achieved everything he had hoped to in the time he had.
We had to talk about really hard stuff of course, but both of us found it so tough and couldn’t talk about it for long. We never talked about the end of our time together, or what to do next but we didn't need to because we were so in sync with each other. Ryan always put himself last and thought about those he loved first. He is the kindest and most selfless person who gave me the happiest memories. I am so proud that he is my husband.
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