Patient Stories

Charlotte explains how our Hospice at Home nurses helped to care for her husband, Glen. In 2021, Glen was diagnosed with an extremely rare cancer, an embryonal sarcoma, on his liver. The cancer had not been seen in an adult for over 15 years. “I found out I was pregnant with our daughter, Aurora, in February that year. We were just loving life and getting everything ready for her. Then in May, Glen got a pain in his stomach. We thought he’d just pulled a muscle, but he was still in pain three weeks later. A scan showed a large mass on his liver. His stomach just kept growing and growing and he was in a lot of pain with it. He was a really fit and healthy guy but at eight months pregnant, his stomach was bigger than mine because the mass was so big. The operation was fraught with risks He needed an operation to remove the mass but because it was growing so much the hospital said it would be too dangerous.  We couldn't just take that as an answer. So I rang around and we managed to find a surgeon in Cambridge who operated in late August.The operation was fraught with risks. It was life or death really, but Glen wanted to see Aurora, and we had everything to live for. They removed a mass the size of a watermelon. It was 17lbs (8kg), the same weight that Aurora was when he passed away. He made it through the operation and had the biggest scar you would have ever seen on his stomach. He was in ICU and then he was focused on getting home as by then he’d spent several weeks in hospital. He wanted to be at home All he wanted to do was be at home in Derbyshire and start nesting down for Aurora who was due at the end of September. Because the cancer was so rare, they didn't really know how to tackle it. So he had a really extreme chemotherapy routine. Every three weeks, he had to go into hospital and be hooked up to a drip for about 48 hours. He'd have a whole weekend in hospital having chemo, then three weeks off.  He had ten rounds of it. Glen was given the all-clear in May 2022 and we said this was going to be the start of our future together. We were told the cancer was back But then in August, just three months later, we were told the cancer was back. This time, it wasn't just a mass. It was taking up the whole of his insides, in every nook and cranny you can imagine. They said there was nothing that they could do, but we couldn’t take ‘no’ as an answer. I went to all the specialists with his scans, but they all said the same.So, then we had a hard decision. Do you take the chemo and potentially be really poorly, or do you go for end-of-life care? Glen took the very hard decision to go for end-of-life care. He’d spent weeks in hospital, and didn’t want to be there again. His priority was to be at home and be with Aurora, and his family as much as possible. Being a Dad was the world to him. We’d longed for Aurora for a long time, and he just doted on her. Hospice at Home end-of-life nursing care We got all the equipment at home and that's when we started talking about Treetops Hospice at Home care. We didn't know anything about end of life care. You never dream it's going to happen to you. You never dream it’s going to happen to somebody so young as well. All we wanted to do was keep Glen at home, keep him comfortable. But because of the extreme nature of his cancer, the pain was excruciating. It wasn't easily manageable. Every day we were upping the pain relief and  trying to get on top of it. The Hospice at Home nurses were like rays of sunshine. They would ring us up as soon as they started their shift and ask if we needed any help because they knew how much pain he was in. They would come straight away and sort him out. We had that reassurance that if the pain did get bad or we had any issues, they were on hand for us. The nurses were so kind and thoughtful, and mindful about our situation. Aurora was only 11 months old, and your brain doesn't function as much as it normally does. They got to know us so well and would ask about her. They spoke in really simple terms so we could understand and would answer any questions that we had. They gave us the knowledge that we needed in a language that we needed, which was simple to understand. It was important because you've got so much whizzing through your head. [button url="https://www.treetopshospice.org.uk/our-services/hospice-at-home/" template="block" class="btn-block--red"]More information about our Hospice at Home nursing care[/button] The nurses were lifesavers Me and Glen’s Dad were sleeping downstairs in the living room with him. Having the nurses meant that all of us could sleep for a few hours, and it gave us peace of mind. They were lifesavers for us in those moments. We found out about Glen’s diagnosis on the 8th August and he passed away 20 days later.Without the Hospice at Home care, there's no way we could have kept Glen at home, purely for the pain management side of it. He would have had to be in hospital with 24 hour care. Home was the priority for him. It meant that he got to experience things, people got to see him and he didn't feel like he was in a clinical environment. He got to see that Aurora had started to walk, He got to see her bedroom and play with her toys with her. He got to be with Herbie, our dog. Anybody could just come and see us. He could have all his favorite food, not that he was eating much.  He was requesting McFlurrys because he loved ice cream. We were able to fulfill his final wishes One night, we sat down and read through all the letters that we wrote to each other when we first started dating. We got all the photos up from our holidays together and reminisced. We’d made mix tapes for each other, so we had them on in the background which was lovely.Without Treetops help we wouldn't have been able to make that horrific part of our lives manageable and we wouldn't have been able to fulfill his last wishes." [button url="https://www.treetopshospice.org.uk/our-services/hospice-at-home/" template="block" class="btn-block--red"]Find out about how we can support your loved one at the end of life[/button]

Tracey explains how our Hospice at Home nurses helped to care for her husband, Dom, after he was diagnosed with cancer. "One day, Dom had a seizure at home out of the blue. We rushed him into hospital, and they did scans and tests. They found a mass in his sinus. Because the cancer was so far advanced, surgery wasn’t an option. Hospice at Home nursing care at home Dom wanted to die at home. One of my worries for months had been caring for him all on my own, especially towards the end. With the Treetops Hospice at Home nurses, I wasn't on my own. They gave me comfort and peace at a time when I was terrified. The first night with the nurse there, I was able to go to bed. It was the first night I'd been in our bed for six weeks. I was knackered. After a proper sleep, I felt I could take on the world. I could get the rest I needed Dom thought the Treetops nurse was lovely too. It helped him, because it helped me. It gave him a bit of peace as he could see it was taking a lot out of me. He was reassured that I could get the rest that I needed. There were times when I was Dom’s nurse and his carer. But for those few nights, Dom needed a wife, and I could be his wife again. That was a really big thing. When Dom died, we were all in the front room. Just us and some candles. Dom was asleep and I was just sat there holding his hand and talking to him. It was exactly what he and I needed. It was calm, it was peaceful, it was at home, and he was pain-free. [button url="https://www.treetopshospice.org.uk/our-services/hospice-at-home/" template="block" class="btn-block--red"]Find out more about how our nurses can help care for your loved one[/button]  

Ellen shares her personal experiences of how our Hospice at Home nurses helped to care for her husband John, affectionately known as ‘Buzz’. "About 20 years ago, Buzz was diagnosed as diabetic and having a fatty liver, but the doctors said it was nothing to worry about. He was on medication, and it didn’t stop us from doing anything at all. We just carried on living. The Treetops nurses were truly dedicated to end-of-life care But at the start of the pandemic, he was diagnosed with ‘autoimmune hepatitis’ (a rare liver disease where the body’s immune system causes damage to its own healthy liver cells). Buzz started to get weaker and every few months he needed fluid draining from his abdomen. Just over two years ago, we saw Buzz’s consultant and he said, ‘your liver is gradually deteriorating. I would say you’ve got 12 to 18 months left’. It came as a shock to both of us.The Treetops nurses' support meant we could be together as a family at home. The nurses were amazing and truly dedicated to end-of-life care.  The nurses also came to care for Buzz at night Buzz was frightened to be on his own at home, so they would sit with him. They were so, so lovely with him and it meant I wasn't worrying about him while I went to do some shopping or go to the bank. I wasn't getting much sleep, so the nurses also came at night. They were so caring and professional. The nurses made the last few days of Buzz’s life so calm and comfortable. He was peaceful and he was pain-free. He passed away peacefully and with dignity. [button url="https://www.treetopshospice.org.uk/our-services/hospice-at-home/" template="block" class="btn-block--red"]Find out more about our end-of-life care[/button]  

Sarah Joyce shares her personal experiences of how our Hospice at Home nurses helped to care for her mother-in-law.

Doug shares his experience of bereavement counselling at Treetops, and the difference it made.

Jenny shares her experience of Hospice at Home end-of-life nursing care for her dad, and the difference it made.

Paramjit shares her experience of Treetops Hospice and the difference it makes to her. Paramjit's daughter, Sheenam, is living with Huntington's Disease.

Arun shares his experience of bereavement counselling and the difference it made to his life. "My father passed away from liver cancer and it was a truly sad time. We were told earlier that year he only had several months to live, and I thought he would live much longer. "I saw my father’s body when I came home. My family were there and my mum held my hand and said ‘your father’s passed away’. [button url="/about-us" template="block" class="btn-block--red"]More information about bereavement counselling for adults [/button] I was very angry and knew I needed help "I felt I had not processed what had happened, as I had to be the strong one for my mum and little brother. "One day, a family member truly upset me with remarks about me and my life. I was very angry and broke down and cried. I’d cried before and during my father passing away, but this time I knew I needed help. "The bereavement counselling at Treetops was brilliant. It was just what I needed at the time. I slowly put the pieces back together "My counsellor was very supportive, listening to me and helping me understand myself through this journey. Our sessions helped me to slowly put the pieces back together. "The counselling helped me to look at my life and what I really want. That is to be happy within myself, travel, meet someone who makes me laugh and happy, and to have a creative career. I am a creative person and now I have dreams of acting, photography, and living my life. [button url="/about-us" template="block" class="btn-block--red"]Struggling with grief? Find out more about our support following a bereavement[/button] "It’s important to understand why you’re seeking help and be honest with the process. "Everyone handles things differently, and I was very blessed to have had the help from Treetops. I understand myself a lot better. I have the tools to cope "My counsellor helped me realise I have the tools to cope with the loss of my father and I think I am very lucky to have spent time with him which I truly cherish. "This year, I feel my creativity has returned and I am making positive steps in achieving the life I have always dreamed of. "I want to thank my counsellor and Treetops for their help."

Karen shares her experience of Hospice at Home end-of-life nursing care for her mum, Celia, and the difference it made.

Daniel shares his experience of Hospice at Home end-of-life nursing care for his mum and the difference it made. "In April 2019, I got a phone call from my mum one afternoon while visiting my dad’s memorial tree at a local burial ground. [button url="/about-us" template="block" class="btn-block--red"]More information about our nursing care and support for people at the end of life[/button] "If I’m honest, I knew something wasn’t right before I answered. It was mum asking me to take her to hospital. She’d been referred by her doctor, there and then, for tests because something wasn’t as it should be. "Up to and including this point, mum was the picture of health and happiness in her new-found retirement. She was going to a local gym three to four times a week along with line dancing at the local village hall. There was nothing more they could do "We were told by the hospital that after three courses of chemotherapy there was nothing more they could do. Mum’s bowel cancel was so aggressive and rare, nothing was touching it. "In true mum spirit, she got all her affairs in order - bills, insurances, car log book. You name it, she took care of it. Just as she had done all her life, along with taking care of me and my brother, even though we were in our 40’s and had flown the nest decades previous. "There were numerous emergency trips to the Royal Derby hospital, both in and outpatients. During which I told her I wasn’t going to let her die in hospital which was her worst fear. It calmed her instantly. I can still see the settled look on her face whenever I think of that conversation. I took her home as I'd promised "Inevitably, the time came when enough was enough of hospitals. I was taking her home as I’d promised. "The decision was made on a Thursday, but the hospital was hesitant. We didn’t have anywhere downstairs to wash and bathe her, let alone give her the round-the-clock care she needed. "Luckily, I’m in the trade and called a few favours in. Within 3 days, we did our own DIY SOS inspired big build! We converted part of her attached garage to a fully disabled toilet and shower room with electrics, plumbing, and most importantly ramp access. Without the latter, we couldn’t get her in the house on the hospital bed. "Full of emotion and bullishness, the ambulance brought her back and we welcomed her finally back home. Fantastic news we had this covered, or so we thought. [button url="/about-us" template="block" class="btn-block--red"]How our Hospice at Home nurses can support people and families[/button] "We didn’t have a clue what we doing at the start. After all it was us who’d been looked after. Now the roles were reversed. "I particularly was brought down to earth very early that day when the others went for provisions and mum needed the toilet. I knew had to get her out of bed (at this point she could hardly move her muscles properly). Help her onto the toilet, then back to the bed. And to make sure she was clean and comfortable. Anyone who’s been through this, knows how difficult it is. The hospice nurses were a godsend "When the Treetops nurses came at night to relieve us, so we could get some sleep, it was a godsend. They were so friendly, helpful and understanding. "They really were amazing. To the point that when it was mum’s final hours, the Treetops nurse woke us. She briefly explained she would leave us to say our goodbyes alone, as there wasn’t much time left. The care we received will always be clear in my mind. The care we received in the evenings and occasional day visits by Treetops Hospice were invaluable. There are no other words to describe it.

Ross shares his experience of bereavement counselling and the difference it made to his life.

Harvey shares his experience of bereavement counselling and the difference it made to his life. Harvey was just 10 years old when his older brother Ed died. Following Ed’s death, Harvey became angry and isolated, getting into scrapes at school and having panic attacks. [button url="/about-us" template="block" class="btn-block--red"]Find out more about our counselling support for children and young people[/button] I’ve not had a childhood since Ed’s death “I’ve not had a childhood since Ed’s death. I’ve had a life, but not a childhood. That was taken away from me. I was 10 when we lost Ed and so I was at an age where I understood that he was gone and not coming back but, at the same time, I wasn’t old enough and mature enough to get it. I kept thinking that they’d got the wrong person, that he was going to come through the door and have tea with us at any moment. You have to grow up very quickly Immediately after you lose the person, you’re no longer an innocent child. You have to grow up very quickly because everyone around you who is close to you, changes too. As I got older and hormones kicked in, I got angry. That was one of the ways in which it hit me. Sometimes it was the little things; you don’t want to go to a certain place or do a certain thing because it reminds you of a moment in time. People treat you differently and try to protect you, but what you really need is for life to continue as normally as it can.” I used anger as I was afraid of letting out my emotion I used anger as I was afraid of crying and letting out my emotions. I thought ‘if I’m angry then I won’t be upset’, so any time I felt myself getting emotional, I’d go and find something to be angry at. I’d never really heard of counselling and I was worried . But I remember going into the room, sitting down and being asked normal questions. Questions like ‘how are you,’ ‘what’s gone on’, and ‘how are you dealing with Ed’s death so far’. It wasn’t the bleak place I had imagined The room was brightly coloured and there were paintings on the walls and toys. It wasn’t the bleak place I had imagined it to be.   We’d make things like a sand jar. For every different bit of coloured sand, I would write down a memory of Ed in the same colour pen and attach it to the jar. I still have the sand jar at home. It didn’t have to be all good memories. It might be a bad memory and it’s important to remember that. Harvey returned to Treetops Hospice as a teenager At around the age of 13, everything started to take its toll. I used to always love school. I was academically quite bright, but I fell out of love with it. I hated certain lessons, hated the idea of having to be in a classroom. At home, it was little things like arguing with my family. Anything I could find to get annoyed with, I did. Coping mechanisms One of the things my counsellor told me early on was that I also had to help myself. If you’re not going to help yourself at home and put those coping mechanisms into practice, then the therapy isn’t going to work. You have to try lots of different strategies to see what works for you. I still use those coping mechanisms even now. You leave counselling and it’s not like you’re magically healed. It’s not like you will never feel sad or angry again. That’s not how it works. Life isn’t like that. You have good days, and you have bad days. Being able to use those mechanisms yourself is a valuable lesson that you take away with you. Counselling is hard at the start Counselling is so hard at the start. Be honest. Don’t worry – no-one will judge you. The best time to go is when you don’t want to go. [button url="/about-us" template="block" class="btn-block--red"]Contact us for more information about bereavement counselling[/button] I’ve always felt safe at Treetops Hospice. I’ve also felt vulnerable. I was talking about things and letting go, and I didn’t want that. But looking back on it, I also had happy times. There wasn’t one session where I didn’t at least smile or laugh once. Hard to admit you're struggling It’s hard to admit that you’re struggling. But I’ve said things to my counsellor that I would never say to my mum or dad. I am really close to both of my parents but there is still stuff that I wouldn’t talk to them about. I don’t want to worry them. My counsellor was amazing with me at such a difficult age. She talked to me in a way that she could dive into my brain and made me feel so comfortable. You’d be so focused on doing a task like making a sand jar, that stuff would come out. That’s why it’s so great. You have someone there who doesn’t judge you. You can get it all out there and they’ll never tell you off. They’ll advise and help you, but never judge you. I don't hate life anymore "The impact of counselling is that I don’t hate life anymore. It’s quite scary to think where I would be right now if I hadn’t have had counselling." Those positive things that have happened in my life may not have happened. I would probably have done some bad things that I’d have gone on to regret. If I hadn’t had counselling, relationships with my family would have been rough. I wouldn’t enjoy life the way I do now. I wake up every morning and even if I feel sad, I find things to do that I know pick me up. A few years after I lost my brother, I lost one of my best friends Billy’s death taught me so much in a way. He was battling cancer for years, but always had a smile on his face. He told me that this stuff gets thrown at you in life. But the world keeps on turning and you have to get on with things. It taught me so many things. I stopped counselling pretty much a year later. We went from a session every week, to a session every couple of weeks. You can pick up the phone at any time You start making baby steps. I got to a point where it wasn’t a whole session of talking about sad and angry emotions. There was a lot more positivity when I came into the sessions and also when I left. I knew then that I didn’t need counselling. But you’re never thrown out of counselling. you’re told that you can pick up the phone at any time.” Non-talking therapy for bereaved children After finishing his counselling sessions, Harvey was invited to join Treetops non-talking group therapy for young people. "In the first session, you go in and there’s one massive elephant in the room. You know everyone has been through some trauma and struggled, but you make friendships. [button url="/about-us" template="block" class="btn-block--red"]More information about our non-talking therapy for bereaved children and young people[/button] Everyone gets involved in different therapy techniques. By halfway through that first session, you’re all good pals, supporting each other. You realise that you’re not the only one. There are other people who are going through the same stuff that you are going through. Trying different therapies was great. I would never have tried something like equine therapy or yoga normally. But it was amazing. The main thing is that you’re trying something different and laughing, sharing your emotions. I can openly talk about receiving counselling. I’m not at all embarrassed or ashamed. For anyone considering it, I’d tell them to give it a go and have an open mind. Don’t be scared. I wouldn’t have had a happy life if it wasn’t for Treetops. I’m thankful for being here, and doing amazing things. Treetops have allowed me to have a positive outlook on life.