“There’s a different philosophy towards caring at the Hospice and it shows in all the staff. The Hospice couldn’t possibly have done more for us.”
“When we found out my mum had pancreatic cancer, we tried to do as much as possible with her as we didn’t know how much time she had. She’d had the cancer for a little while before she found out. I’m a nurse and so I’d picked up on things that weren’t quite right, but it was a total shock to her. We had eight weeks together from when she was diagnosed to when she died. She told us that she wasn’t afraid to die, just that she would miss us all very much."
The day after she received her diagnosis, my husband and I dropped everything and took her and my dad to Whitby for fish and chips. We had a great time! A few days later, on her 82nd birthday, we took her and dad to the casino for a meal. As a surprise, our sons met us there with their girlfriends and she was over the moon. She said that her perfect day had just became even more perfect!
I took time off work so that I could care for her. I knew I wouldn’t have been able to function if I’d have stayed at work; I’d have been too worried about her. So, I became mum’s main carer. At first, she stayed in her own home, which is just down the road from me. She’d text me when she woke up and I used to go and shower her in the morning. She told me I was the only one she would let shower her and we felt fortunate that she didn’t have to have a stranger doing it.
We used to have a laugh, I mean, we had moments when we cried sometimes, but we laughed a lot as well. I’d say things like, ‘Oh, come on Mother, you’ve got to comb your hair! Don’t let your standards drop, love!’ We didn’t want to treat her any differently than we always had, and it put a smile on her face.
Our first involvement with Ashgate was through the palliative care nursing team. A nurse called Anita started to visit my mum at home on a regular basis. The first time Anita came round, mum was having a really bad day. She’d had an allergic reaction to some medication and had a rash all over her body. She was also feeling very lethargic and just wasn’t herself at all.
I’m a nurse myself and so I could tell as soon as Anita walked through the door that she was a very calming presence. She had an attitude of, ‘Don’t worry, we can sort it.’ I’m the kind of person who, when I say I’m going to do something, I do it, and I appreciate that in other people. Anita was the same. Everything she said she was going to do, she did, and that really put us at ease. It meant that my husband and I could just focus on caring for my mum.
Apart from being very tired, my mum’s main problem at that time was restless legs. I was worried that she was constantly tortured by that and couldn’t sleep properly as a result. She also often felt sick. Anita managed to sort those problems out almost straight away. She had new medication within 24 hours and it worked. It was amazing to see a change so quickly.
I’d asked Anita whether, if mum were in pain in the middle of the night, I would be allowed to give her the pain relief she needed. I knew that if mum needed strong pain relief urgently, we wouldn’t want to wait for a district nurse to come and administer it. Anita authorised me to do that if I felt able to do so, and so that was another huge relief for me.
A few days before mum died, we noticed she had started to decline, so we moved her into our bungalow to keep a closer eye on her. It was a Sunday night when her pain started to get much worse. I was so stressed and worried – in a total panic – and I didn’t think I could give her the pain relief she needed. At first, I had really wanted to nurse mum all the way through, but I didn’t realise how hard it would be to nurse a family member until I was facing that situation.
I ended up ringing Ashgate and they said they would send somebody out. Before long, a nurse arrived. She could see that I was all over the place and she just said, ‘Lynn, I will sort things out for your mum.’ It was exactly what I needed. The nurse gave mum the medication to help with her pain and to help her settle. She checked we were all OK and then she left.
Mum held on that Sunday and then died on the Monday. The day she died we’d had all the family here. My dad and the boys were with us, my brother had been round too and so had her sisters. Everybody was coming in and out all day. My eldest boy and his girlfriend went out and came back with a load of food, so we all sat round eating and drinking wine and spending time with mum. It sounds odd to say it, but we had a lovely day. The district nurses had come around to set up a syringe driver for mum and they let Ashgate know so everybody knew what was happening. The communication between the different organisations was excellent.
She died at twenty to nine at night, after everybody, apart from my dad, had gone. He was with her the whole time. I noticed her breathing was slightly different, so I knew she didn’t have long left. I came out into the kitchen and started texting one of my mum’s best friends to let her know and when I went back in she had died.
I was so worried when I found out she had pancreatic cancer that she would be in a lot of pain and we wouldn’t be able to control it, but it wasn’t like that at all. Everything seemed to fall into place in the end, and my mum had excellent care throughout. Mum and I had very open conversations about the care she wanted. She didn’t want to go into a nursing home or go to hospital. She wanted to stay at home and I said I would do whatever I could to make that happen. She trusted me and she wanted me to care for her.
As soppy as it sounds, it felt like people had their arms around us. No matter what time of day, we had a support network of friends, family, the GP, the pharmacist, district nurses and the Hospice, who could help us, so I wasn’t all on my own. Answers to any questions we had were easily available to us.”
“I was so worried when I found out my mum had pancreatic cancer. I’m a nurse myself and I wanted to care for her, but I was really worried she’d be in a lot of pain and we wouldn’t be able to control it. Although mum got very tired, she was quite well up until her last few days. Fortunately, we had a support network of friends, family, the GP, the pharmacist, district nurses and the Hospice, who could help us when she started to decline, so I wasn’t all on my own. Everything seemed to fall into place in the end, and my mum had excellent care throughout.
The Hospice organised all of mum’s equipment – they couldn’t give us enough! We spoke to an occupational therapist from the Hospice and within 24 hours they came out and they assessed what we needed. Within the next 24 hours, everything was delivered! When time is precious, it’s really important to get the equipment as soon as possible and the Hospice really understand that. Anything we needed, it just arrived. We had two walking frames, slide sheets, a back rest, a perching stool and a commode. We then needed a baby alarm after we moved mum into our house in a bit of a rush. I wanted to be able to hear her when I went to bed to make sure she was OK. We told the Hospice on the Saturday that we might need a baby monitor, and they said that if we wanted to, we could come and fetch one right away, which was brilliant!
Getting a stairlift was also a big issue for me. From the minute I found out about mum’s illness, I put my nurse’s head on saying, ‘right we need a stair lift now’. Mum was getting breathless anyway when walking and she was only going to get more tired. I knew that it might mean the difference between her being nursed at home or not. This was before we moved her into our bungalow.
A friend of mine had just ordered one for her mum and told us it took three weeks to arrive, so I was panicking thinking that three weeks would be too long and we needed one sooner. Mum was only with us for eight weeks from her diagnosis to when she died. We asked Ashgate for advice and they gave us the numbers of some stairlift companies. We called up and they couldn’t have been more helpful. They came, measured up and we had a stairlift fitted within 48 hours! That really took the pressure off and it was so good that even my dad started using it too!
A physiotherapist from the Hospice also suggested that mum have a little walker so mum could get out in the garden. It’s like a Zimmer frame with wheels and a little seat. It’s things like that, that if somebody had asked me what mum needed, I wouldn’t have thought about that, but it made a huge difference. The support we had from Ashgate was just phenomenal.
Mum had to go to the Hospice only twice or so to see a consultant. The moment we walked through the door we were always greeted warmly. Everybody’s attitude was great. The receptionists were lovely and it all helps to build trust in the service. You can see that there’s a different philosophy towards caring at the Hospice and it shows in all the staff.
Most people are affected by cancer in some way but it’s only when it affects you personally that you see how important the Hospice really is. The emotional distress on a family going through cancer is huge. We needed all the support we could get and, as far as we can see, the Hospice couldn’t possibly have done more for us. They helped to make our lives as easy as possible in those final weeks. We just felt backed up. I felt that I wasn't on my own. The Hospice knew I wanted to look after mum and they knew she wanted to be at home, so they just said, ‘OK, we’ll support you to do that’, rather than leaving me on my own to do it.
We realise now that if people didn’t support the Hospice through donations, my mum wouldn’t have been able to have all those things and she wouldn’t have been able to stay at home where she wanted to be. It’s thanks to everyone who has donated in the past that she was so well looked after. And we know that what we donate now will enable the Hospice to carry on delivering this care for future generations. We were so fortunate to have such amazing care and I couldn’t criticise a single thing about Ashgate. There was nothing the Hospice could have done better to support us in caring for mum.”
“The support I’ve received since Frank died has been tremendous. The Hospice helped me get back to living again and I couldn't have done it without them."
In September 2017, my husband, Frank, who I’d been with for 30 years, went into hospital with breathing difficulties. At the beginning of his second week in hospital, I went to visit him and he was sat there crying. I asked him what was the matter, and he said the doctors had told him he had cancer and they’ll be coming to talk to me soon. A member of staff pulled me aside and told me that Frank had two to five years to live. And that was it. I broke down in tears.
A couple of days later, I had a phone call from Ashgate who said that the hospital had been in touch and they were asking when they could come and visit me to discuss the future for both of us. I had two visits from somebody from Ashgate whilst Frank was still in hospital to see how they could support me throughout Frank’s illness.
Frank came home from hospital on the Tuesday and he was ok. But on the Friday morning, he wasn’t feeling well and had to be readmitted to hospital.
When I headed to the ward Frank was in, a nurse came up to me and said the consultant wanted to speak to me before I saw him. She took me into a little room and I knew immediately that it was something serious. I could feel that something wasn’t right.
I was waiting quite a while with a horrible feeling in my stomach. I found the nurse and said, “Can somebody please come and see me? I think it's unfair to keep me waiting. I know something's happened… please.” She kept looking around and told me the consultant would be here in a minute. I pleaded with her and, not long after that, we saw the consultant and ward sister coming down the corridor. They sat down opposite me and the consultant said, “I'm sorry to tell you, but Frank died five minutes ago.”
I just couldn't believe what he was telling me. I was then left with the ward sister and the other nurse, so I just asked to go and see him. I stood up and collapsed. I couldn't stand. They had to carry me onto the ward where he was. When I got there I just hugged him and kissed him. He was still warm and soft and it was just like he was sleeping there peacefully. I asked the nurse to take off Frank’s wedding ring for me because I didn’t want to hurt him. I said, “Goodnight darling, I Iove you very much.” And then walked away. I was in total shock.
I was in such a bad way after Frank died. I lost my brother at the beginning of the year as well; he died very suddenly. We lost a couple of friends throughout the year and then Frank died in the September. I had all the difficulty of sorting everything out after Frank’s death and all you need at that time is support from friends, but often people don’t know how to talk to you when something like that happens. In fact, a lot of my friends simply stopped talking to me altogether.
So, it was a very lonely time for me. I felt totally on my own because I have no family now as such, and I really struggled in those first few months. Then, around Christmas time last year, I got a phone call from Ashgate offering me bereavement counselling. I took them up on the offer as I knew I needed the support.
I came to the Hospice once a week for group counselling sessions to start with. I had to leave the room a few times because I was finding it hard and I just sat and cried in the reception area and tried to deal with it. Then, when the weeks of groups counselling finished, we were offered drama therapy. I’d never done anything like that before and had no idea what it was like, but four of us from that group decided to give it a go.
I found that the drama therapy really helped me. I've come out of it a much stronger person, probably even more than I was before Frank died. Even after the first week, I felt a change. It’s really helped me to cope with things and move forward. I feel ready for life now. You don’t have to act, and you don’t need any drama experience, there’s a little bit of improvisation where you work together but we were quite comfortable with that because we all knew each other from the bereavement counselling. The four of us who did the drama therapy have become good friends now and we still meet up for coffee and lunch, one year on. After the group drama therapy sessions, I was offered one to one drama therapy and decided to take on that as well.
If the Hospice hadn’t been able to give me support after Frank died, I don’t think I’d be here. I was in such a desperate state. I couldn't handle things and I was finding it difficult coping with living. I was so lost and alone. I spent many nights curled up on the settee sobbing my heart out for hours on end, not knowing what to do or how to deal with things. I tried phoning friends, but they weren't answering the phone or didn't have time to talk. It gets to the point where you can’t call people anymore and the telephone becomes the heaviest object in the world. You need people to be phoning you and asking how you are. Or you need people to call round and ask if you need a bit of help, but many people just shy away from it.
There needs to be more done to raise awareness of bereavement. Until we learn to learn how to deal with bereavement as a society, people will continue to feel very alone. That’s why I’m no longer afraid to talk about my experiences. I want people to know how important it is to support each other when they lose someone so close to them.
I was so grateful for all the support I received from the Hospice that I decided to sign up to Sparkle with a friend. Unfortunately, my friend wasn’t very well on the night, so I decided to do the walk by myself anyway. I got there and felt a bit lost at first, but more and more people were arriving, and I thought, I have to do this. I saw a lady sitting on the curb on her own and so I just said to her, "Are you comfortable down there?" and we got chatting. A little while later, her friends arrived to do the walk with her. She said to me, “Come on then, you can walk with us.” And she introduced me to everybody.
It was a very emotional evening, especially once the walk started. We were in the middle of the crowd so, as we set off, we could see a stream of pink people and sparkling bunny ears in all directions. Then we saw the fireworks going off. I thought, I'm glad I'm with people because I think I would have just burst into tears if I was on my own. It was so emotional. Not only that but everybody came out on the streets to cheer us on as well. I thought it was really nice that they were showing their support for the Hospice and helping to boost us too; it made a big difference. I’ve stayed in touch with the ladies I met at Sparkle and we’ve even arranged to meet up next year for the walk! I loved it so much that I signed up to do next year’s walk the day after!
The support I’ve received since Frank died has been tremendous. The Hospice helped me get back to living again and I couldn't have done it without them. That’s why I am walking the Markovitz Sparkle Night Walk this year.
"Although Jason was in his final days, he did still matter, he was still a person and he was still important."
My husband, Jason, was diagnosed with bowel cancer in October 2014 and died on 24th December 2015 in the Hospice at the age of 43. No day is a good day to lose your husband, but Christmas Eve was especially hard for us. We have two beautiful children who were nine and five years old at the time.
Ashgate were involved with Jason’s care towards the last few months of his life. He used to come to the Hospice for appointments with the consultants. An occupational therapist from the Hospice came around to ask if we needed any equipment in the house but, by this time, Jason had really become very ill. When she saw him, she could see how much pain he was in, and so she said it would be best if he came into the Hospice so that the pain could be managed.
Initially, I didn’t want him to come here. I had no idea what to expect as I’d never been to a hospice before. I thought it would just be like a hospital. However, within ten minutes of being here I knew that this was the right place for him. The staff were really caring and every time we asked for something or Jason needed anything, the staff would do it. He didn’t have much of an appetite, but he liked icepops and so they would always bring him one whenever he wanted one, it didn’t matter what time of day or night it was. It gave us a lot of confidence, knowing that he was being listened to and cared for so well.
At first, Jason was in one of the bays, sharing with another gentleman. But the nurses could see that he wasn’t well and so told us that as soon as a private room becomes available, Jason can be moved into it. They moved him the very same day and it was so much better for him.
The kids could come and watch TV with him and we could spend quality time together as a family. We have memories of opening Christmas presents together and all the staff at the Hospice make Christmas feel really special. It was just nice to know that they cared about us. Although Jason was in his final days, he did still matter, he was still a person and he was still important. That’s how they made him feel and that’s how they made us feel too.
The consultants always explained everything in detail and, although Jason was near the end of his life, they didn’t give up on him. They were still trying anything they could think of to make him more comfortable.
We felt very comfortable here; the kids would walk around the corridors in their pyjamas and slippers, just like being at home. We’d go to the family room and make ourselves drinks and the kids would go and play with the toys. There were no visiting hours or restrictions on how many people could come. You never felt like you were getting in the way; his friends and family could come and visit anytime, you never had to rush off, and we were always made to feel welcome. We just felt really at home here.
I remember, in the day time on Christmas Eve, I was on my own in a room and the nurse came in, shut the door and said, “Are you all right, how are you?” She spent a bit of time talking with me and I thought that was really nice of her.
You don’t expect this, but the Hospice is a lovely place to be and I’m so pleased that Jason spent his final days here and we could make those last memories. We didn’t have to worry about the medical side of things at all; we could just leave that in the hands of the staff here and spend time together as a family in his last few days.
It was really important to me that I could stay with Jason overnight at the Hospice. Jason’s mum and dad were also able to stay, as well as his brother who had come down all the way from Scotland. It meant that we were all able to spend precious time with him.
I was planning on staying with Jason the whole time, but I had a dilemma because the kids still believed in Father Christmas and so, on Christmas Eve, I couldn’t decide whether to stay with Jason or go home and get the presents under the tree. It seems mad to say this now, but all I could think about what was what I was going to do with the Christmas presents. Jason wasn’t doing well but, in the end, I went home to help make sure the kids still got their Christmas.
I got home and it was about six o’clock in the evening. A few hours later there was a knock on the door saying that I needed to come back to the Hospice quickly, but the presents were still not ready. I rushed back to the Hospice and my brother kindly said he’d leave early to sort the presents out for the kids before they came home.
Looking back now, I definitely feel like we were out there on our own until Ashgate got involved. Before that, we didn’t know how to tell the children what was going to happen to daddy and there was no one to give us that advice. However, when we were referred to Ashgate, they gave us the emotional support we needed to deal with things better.
“Geoff was so relieved when he came back to the Hospice. He said it felt like going home.”
In October 2010, my husband, Geoff, was diagnosed with Parkinson’s. He was on medication for it which didn’t seem to be working and so in February 2011, we went back to the hospital where we saw another consultant. This consultant was new to the team and an expert in these kinds of diseases. He diagnosed Geoff with MSA on his first appointment.
It all started with a bad back and then Geoff’s bladder stopped working. Nobody could figure out what was causing it. It wasn’t until later when he was referred to neurology that they diagnosed him with Parkinson’s, then later MSA. We didn’t realise that Geoff had already been having symptoms of MSA for some time. He had been having trouble breathing when he slept and had been having violent dreams.
At Geoff’s first neurology appointment, I asked the doctor to write down the name of the condition for us as I’d never heard of it before. He didn’t tell us at the time that it was terminal, he just told us not to believe everything we read on Google. We came out with an armful of prescriptions and from then on, Geoff went to see the specialist consultant every three months.
Knowing that Geoff would get gradually worse, we decided to stop working and travel to some of the places we’d wanted to go to – a few places we’d been before and loved, and some new places we’d always wanted to visit. We were very lucky that in that first year after his diagnosis, in 2011, Geoff was still very mobile.
Then, in early 2012, Geoff had a fall in the snow and hurt his back again. He never properly recovered and from then on, he really started to decline. It was at that time that Geoff was referred to the Hospice and Ashgate got in contact with us straight away. Lesley, a Hospice at Home Support Worker, started coming over for half a day each week to help me so that I could get out. She’d say, “Right Carole, off you go! Do any jobs you need to do, meet friends, whatever you want. I’ll see you later!” She told us about the Day Hospice and Geoff was really keen on the idea, so he started going there every Friday and really enjoyed it. That gave me a bit of a break too. He had so many laughs there with the staff and the other patients. Having all of that support was wonderful; I can’t fault the Hospice at all for the support they gave us.
In 2013, the year before Geoff died, he took a turn for the worst and so he was offered a bed at the Hospice where he stayed for a few weeks. He had fantastic care whilst he was there. Geoff was quite happy to go into the Hospice when Lesley suggested it and she explained it was just to control his symptoms and then he can go back home. It gave me a well-needed break from caring, plus Geoff was able to have lots of physiotherapy sessions to help his back pain.
I went in to visit him every day with our dog, Jacob, who was very popular with lots of the other patients and their families! There was a lady in the room opposite Geoff’s who was very ill and I got to know her daughter who was with her all the time. We’d met many times in the Family Room. She said to me one day, “I’ve got a favour to ask you. I hope you don’t mind, but could you bring your little dog in to see my mum?” Normally, Jacob is very excitable when he meets new people, but I picked him up and put him on this lady’s bed and he just lay there licking her hand. A big smile came across this lady’s face. She couldn’t speak, but the daughter was talking to her saying, “Remember when so and so had a dog, mum?” We were there for about 10 or 15 minutes until the lady started to look tired so I said I’d leave them. The next day, the daughter came up to me and said, “I don’t want any tears because my mum is now out of pain. She died last night and I wanted to tell you that I’m so grateful for what you did.” I said, "I didn’t do anything! I only brought the dog in and laid him on the bed!” But she told me that it was wonderful.
Geoff and I spoke about what might happen as he got more ill. He said he didn’t want to have a feeding tube and that if he had trouble swallowing, he would just like to let nature take its course. We were very open about things like that, as it was important to both of us. Ashgate made sure to have those conversations with us about whether he wanted to be resuscitated in an emergency and what kind of treatment he wanted as he got more ill. They were really good. It was Geoff’s wish to die at home, but he said that if he couldn’t die at home then he wanted to die in Ashgate. I agreed that it was the best place for him if he couldn’t be at home.
Geoff died much earlier than we’d expected. It started when he got a urine infection one Friday and on the Sunday had to be taken into hospital. It was a really frustrating time for us because he couldn’t be transferred to the hospital he was under. They couldn’t move him until they got his infection under control. It wasn’t until the Tuesday that the results from the labs came back and they could find out what kind of antibiotics Geoff needed, all the while he was getting worse and worse.
I was so worried about Geoff that on the Tuesday I rang Ashgate and spoke to Dr Sarah Parnacott. I explained our situation and Sarah got one of Ashgate’s specialist nurses who was based at the hospital to come and see us. She was lovely and really helped to put me at ease. She said that as soon as Geoff gets on the right antibiotics and starts to improve, we’ll move him to Ashgate.
Geoff was so relieved when he came back to the Hospice. They’d even managed to put him in the same room he was in before, which he really liked because it was an individual room with a little patio. He said it felt like going home.
I didn’t want to leave him but I was with Geoff’s sister who had travelled a long way to see him and so Geoff said I should go and take her to the station; he told me he was fine. I came away, but I didn’t feel happy coming away. I knew he wasn’t right.
Our son, Dom, had moved to Newcastle but he was coming home that weekend to see his dad. He’d come straight from work so I met him at the station and said let’s get something to eat and go home. We got a takeaway and just as Dom had finished eating we got a phone call. Dom answered the phone and I realised it was Ashgate. I thought Geoff had died and was kicking myself thinking, I knew I shouldn’t have come home. But Dom told me he hadn’t died. He put the nurse on to talk to me and the nurse said, “Mrs Aitken, your husband is very unwell. He was insistent we didn’t ring you but obviously we wanted to let you know that he’s not doing very well so you can come and see him.”
I drove to the Hospice immediately. I rang our other son, Alex, who was living in the South and told him to get up here as soon as possible. By 4am, everybody had arrived to be with Geoff: myself, my sons and their girlfriends. We stayed with him all night and the next day. A specialist nurse came to see us that night at about 2am and it turned out to be the same one we’d seen at the hospital. She asked if we knew that Geoff was near the end and we said yes, but he was still trying to speak and he was aware that we were all there. The staff were wonderful with us and offered us recliner chairs so that we could stay with him all night.
Alex and his girlfriend, Sarah, went to step outside for a bit of fresh air, so I said I’d like to take a walk to the Chapel as I’d never been before. I knew Geoff was dying but I really needed a little break. I went into the Chapel and saw the little prayer box there with some note paper. I wrote a prayer asking for God to take Geoff now, he was very tired and I didn’t want him to suffer any longer. The moment I put the prayer into the box, I heard footsteps running down the corridor and I instinctively knew it was Laura, Dom’s girl-friend. She told me to come quick and when I got there, the doctor told us Geoff had minutes left.
We were all there when Geoff died. The Hospice were fantastic, they shut the blinds on the door, put up a ‘Do not disturb’ sign and we stayed for hours. It was incredible because within just ten minutes of Geoff dying, you could see all the pain that he’d been carrying just lifted and he looked like my Geoff again. He looked ten years younger! He had a very peaceful death and we’ll always be grateful for that. We were all given the space to cry and laugh as well, which was important. My son Dom was able to give his dad a shave after he died; something he’d promised to do when Geoff was in hospital but never could because he was too ill. He did it very carefully as he wanted Geoff to look perfect.
I can’t praise Ashgate enough for the care they gave Geoff and our whole family. I feel like we were very lucky because we’ve met many MSA sufferers and their carers from all over the country and we know that not all of them have had the kind of support we’ve had. With the help of the Hospice, Geoff almost got his wish to die at home, and in the end he got died in the next best place.
I started seeing a bereavement counsellor about a month before Geoff died. I only left it about a month or six weeks after he died before getting back in touch with my counsellor and after that I saw her for a year. She helped me so much. She really understood grief and she taught me a lot about it which has helped me to cope. She understood that the grief will always be there and I’ll just build the rest of my life around it. Nobody said I need to get over it, which I think is really important.
I also attended a bereavement group which was really helpful. There were people there of all different ages and we’d all gone through similar things but we were all different ages. I got so much out of those sessions and they really helped me to put things into perspective. Ashgate even rang my sons and asked if they wanted counselling. We didn’t expect that at all. Although they declined, I thought it was amazing that the Hospice was thinking of them.
“You really were my rock at times.”
Steve was referred to Ashgate Hospicecare as he had complex symptoms after receiving a cancer diagnosis. An Ashgate Palliative Care Nurse supported Steve throughout his illness, ensuring that not only his medical needs were met, but also that Steve was supported emotionally and socially.
To my wonderful nurse,
On the day I received my cancer diagnosis, I stayed strong for mum. But when I woke up the next morning it really sunk in. Mum and dad were staying over, and I wanted to stay strong until they left, but the next morning I turned the telly on and straight away I saw an advert about cancer. I heard the words, “Cancer is undoubtedly the toughest battle you will face in your life” and thought, thanks for that. I totally lost it and cried my eyes out.
As you well know, I am the softest, most emotional man you could meet, but I do think, on the whole and with your support, I have mainly coped quite well through this.
The day I got my results back to say I was clear of cancer, I was telling my mum and dad all about how important you had been and how much I’d thanked you. Dad said, “Send her a card!” I told him I was sending one to the Hospice and giving you a big shout out in it, but he said, “No, send a card to your nurse!” I may be 49 but I will always do as dad tells me! This gives me the chance to tell you the occasions where I thought you really went above and beyond during my journey.
At my toughest times, your part was massive to me. You would always ask me how I was getting on and when I would next see my family, as they live far away. There was a time when you came round and I showed you some family photos. You made me feel like I wasn’t just another number, another patient who was part of a process. I enjoyed your visits and after that, I thought, you didn’t have to do that. What a lovely lady.
Another time, towards the end of your visit, you asked me if I’d made it to the football last Saturday. Again, I thought that was so nice. You were making sure I had gone because you knew how much I enjoyed it and around that time I was struggling to get the strength up to do things like that.
As I’ve said, from the early days, I enjoyed your visits. I saw many faces throughout my illness, but that day I realised, as I was coming towards the end of having help, that you were the most special and caring person I had met throughout all of this last year.
Just one more bit of praise. You mainly came and I was in high spirits, but on odd occasions for two or three days, I had been at the lowest of lows and just didn’t care anymore. You somehow picked me up, brought me back and I was happier again after you left. You must have a special skill to do that.
I have said before that I feel blessed and lucky compared to others. But through “the toughest battle you will face in your life” with no family nearby, you really were my rock at times. I don’t know what I would have done without you and that’s why I will never be able to thank you enough.
I won’t see you again now, but you will always have a special place in my heart for all your help. You are a wonderful, caring lady.
Linda and Theresa’s Story
“The Hospice helped us to all have that little bit of time with David that we will always remember.”
David’s sister-in-law, Theresa, and his mum, Linda, have been walking the Sparkle Night Walk for over seven years in memory of Linda’s son, David, who died 11 years ago at the Hospice at the age of 24.
In March 2017, Linda and Theresa came into the Hospice to share their story. “We've been doing this walk since it was the Midnight Walk and so we've seen it grow over the years. All those years ago there were only about a hundred people who took part. We’ve done it every year and we really enjoy it, even one year when it absolutely chucked it down with rain, we just carried on!<br />
We are looking forward to this year’s Markovitz Sparkle Night Walk, as we do every year. The atmosphere on the night is amazing; there’s a real a buzz. We're always really hyped up all day and eager to get going, but it always goes quickly and never feels like 10k! When we finish we always want to keep going!<br />
It's one day a year when we can do something in David's memory and do something for the Hospice. We always get David’s photo printed on our t-shirts. Even though everybody is doing the walk for their loved ones, it’s a fun walk, not a sad walk. We have a laugh. Everybody's in good spirits and we always speak to people we've never seen before. It's lovely.<br />
David was diagnosed with a condition called neurofibromatosis at birth. This caused him to have a brain tumour at the age of 24. He died much quicker than any of the doctors expected. There wasn't much time between when they found the tumour and when David died.<br />
He was having migraines and this went on for a couple of weeks. We went to see a doctor and he was referred to Sheffield for an operation, but when they went in to operate, they realised that they couldn't do anything as the tumour was on his brain stem. He died more or less a week after that operation. It was such a shock; we didn’t even know that David’s condition was terminal. Sheffield transferred him to Ashgate after his operation. He woke up, but he had brain damage so his speech was slurred and he needed help with feeding.<br />
When David arrived at Ashgate, they were looking at what they could do to get him home. The plan was to get him up on his feet playing snooker as there used to be a snooker table in here.<br />
When he was at the Hospice he was in his own room, it was a big room and all his family and all his friends could come and be with him as much as they liked. Having the time and space for us all to be with David at the end was so important and it’ll stay with us all forever.<br />
The nurses were very good with us too. You knew they were there if you needed them but they didn't interrupt, they just left us all to it. We'd have a wonder around and go to the Family Room and see people making a drink in the kitchen and everybody was quite cheerful and would have a chat to you. It made you feel better. There was nothing miserable about the Hospice, even though we were going through such a bad time. I also liked to go into the chapel. Even if it’s just for a few minutes, you really need that break.<br />
When he died, it was very peaceful and the nurses made sure of that. The day before he died, he seemed to perk up. He was joking and trying to laugh. We'd got the telly on and he was trying to dance to the telly in his bed. This gave his brothers, Michael and Paul, the chance to enjoy those final days with David. That night they gave Paul a pop up bed so that he could stay next to him overnight. David was very close to his whole family and, as the years have gone by, being able to spend that quality time with him at the end has been really comforting for all of us.<br />
The Hospice gave me counselling for quite some weeks after. All my family and Theresa’s family, who were all really close to David, were offered counselling. It was really helpful. <br />
For somebody like me who’s grieving, doing the Sparkle Night Walk really helps me; having the whole community coming together and doing something positive. You feel like everybody who is walking at Sparkle is in the same boat. There's always somebody you know who has had cancer or another awful disease. Even if you've not experienced bereavement yourself, there are always people you know who might need Ashgate.<br />
We appreciate everything they did for us at the Hospice. Although it was a shock when David came here, it was good that he didn’t die in hospital. We all had the opportunity to have our special moment with him here, all the kids got to see him, Paul stayed the night with him, I helped to feed him and so on. The Hospice helped us all have that little bit of time with David that we will always remember and it makes us feel better to think about that.<br />
It seems a long time, 11 years, since David died, but it's not for me. I'll never get over it. It feels sometimes like people think you should get over it, but he’s my son so he’ll always be with me. Remembering David at the Sparkle Night Walk is special for us in so many ways, and so we’ll continue to walk it and continue to support the Hospice as long as it’s going!”
“We always said that the nurses and support workers from the Hospice are not really carers, they’re more like friends.”
In August 2018, Liv Eades, from Barlborough, raised an absolutely incredible £895 doing a skydive for Ashgate Hospicecare in memory of her Mommar.
"I did a skydive this year for my Mommar. She had a rare Parkinson’s type disease known as Multiple System Atrophy (MSA), which is a really awful degenerative disease. It meant that, by the end, Mommar couldn’t eat by herself or even breathe by herself, so she had to have a tracheotomy. She couldn’t talk or even move. My grandad was always by her side as her full-time carer. He took early retirement to look after her. She suffered for about eight years in total with it. They had really wanted to travel together but couldn’t in the end because she was too ill.
Around Christmas time in 2015, the hospital told us she only had a few days to live, so we came and said our goodbyes, which was really overwhelming, but then she went on to live for another two years! It was around that time that Ashgate got involved, and they were involved in Mommar’s care for over two years in total.
Mommar used to come to the Day Hospice once a week. She really enjoyed it, especially because it was at a time when she would find it difficult to leave the house and do normal things. Her illness had really affected her social life and it was also emotionally draining for both her and for grandad. She initially didn’t want grandad to leave her when she came into the Day Hospice, but she was able to meet other people going through similar things as she was, and she loved it. I remember that she made tie-dye cushions and she had physiotherapy there too. When grandad would see her afterwards she’d always be smiling. It was a place where she could have freedom, where she was acknowledged and appreciated and where she could make memories.
After Mommar’s condition progressed, the specialist nurses and the Hospice at Home support workers from Ashgate came out regularly to see her and grandad at their house. That gave my grandad the freedom to walk to the shops to pick up a newspaper, something he found difficult to do before as he would be constantly worrying whether Mommar was ok. Their visits meant that grandad could have a proper rest as well.
We all made friends with the staff too. We always said that the nurses and support workers from the Hospice are not really carers, they felt more like friends. It’s really moving to think about how much they really did care for our family. My grandad really liked one nurse in particular. She would come out whenever Mommar was having problems. Although the nurses couldn’t come out at night, they’d come first thing the next day and so it meant my grandad could get some sleep. It made a massive difference to his quality of life as well as Mommar’s.
They would always talk to my grandad about Mommar’s illness so that he knew exactly what was going on. They taught him all about the different medications she was taking and how much she could have. They taught him how to feed her, how to look after her tracheotomy, manage her catheter. They really did see to everything. He was a hero, the amount that he had to do to care for her, but the support from the Hospice was very good and definitely made things that bit easier for him.
Towards the end it was very hard for all of us. Mommar could still squeeze our hands and laugh a bit, but she couldn’t really move to look at us. Just before my prom I wanted to go round to show Mommar my prom dress but she died earlier that morning. That was really tough, but at least she was able to die at home, where she wanted to be and Ashgate helped to make that possible. We still all think about Ashgate now as being such a great place and as somewhere that will always hold a special place in our hearts. They’ve offered us bereavement support too, so it’s really great to know that’s on hand if we need it.
What Ashgate Hospicecare did for Mommar and grandad was amazing and we want other families to have that. You never know what you’ll need in the future, it could be me who needs it… you just don’t know.
My sister ran a marathon to raise money for Ashgate and so I wanted to do something. I’m 21 and I wanted to do something big, starting with this skydive! I think I have the same attitude as my grandad in that you never know what could be around the corner and so you’ve just got to go for it.
Although I was petrified and close to cancelling, I did it and it was absolutely incredible! I've never felt so much pride setting out at 4am to London on my own, being the second jumper and raising almost £900 for the Hospice. I more than quadrupled my initial target of £200! What a rewarding challenge! I think Mommar would be really proud of me."
"Mum’s wish was to die at home and the Hospice did all they could to respect her wishes and try to make this possible."
“My wonderful mum, Joyce, was diagnosed with ovarian cancer in 2013 at the age of 76. My dear mum, who was always full of life, fun and laughter, was given only two years to live, but she fought on for four years. She initially had chemotherapy and surgery to remove her womb. However, unfortunately, after three months, another scan revealed that the cancer had recurred. She didn’t lose her hair with the chemotherapy, which she was eternally grateful for, since she was always very proud of her appearance and well known for being a glamorous lady. However, after her first round of treatment she decided that she didn’t want to go through it again. She just wanted to try and live life as normally as possible."
For the next year or so, she had a fairly good quality of life. She was taking medication to slow the cancer growth, but was able to keep going out with friends for coffees and meals as she had always loved to do. She had worked in a library for about 18 years before she retired, so she had a big circle of friends, and was a very popular lady! She was the kind of lady that would stop you in the street, whether you liked it or not, and give you a great big hug and a kiss!
In her final year, we started to notice that she was slowing down. She hated it. My dad, who was her carer from day one, never left her side. He was fantastic. He took her on a cruise and he also took her to Paris. She was embarrassed by her condition but they both coped with it very well. I work as a nurse full-time but whenever I had the time, I would pop in to see how they were. Even when I came over, my dad would not want to leave her side. He’d occasionally go out to the little shop around the corner, but he wouldn’t go and spend the day playing golf, as he liked to do. He wanted to be with her all the time because she was his life and he was hers. They nearly made it to their 60th anniversary, which they would be celebrating in 2018, but she died in the summer of 2017.
Ashgate Hospicecare got involved within the last six months of my mum’s life, when she really started to deteriorate. She collapsed one day and was taken to the hospital, and she was then referred her to the Hospice. Mum had two Ashgate nurses who would come to see her each week. They were very friendly and my mum very much enjoyed having them round. They came to her house and assessed her pain medication and gave her drinks to build up her strength. The Hospice also provided her with a special bed and we had a Hospice at Home support worker coming in to give my dad a break.
My dad is a veteran and a stoic man. There were only a handful of times I saw him break down, but towards the end it did get very difficult for him. What’s more, my mum’s personality had changed somewhat due to her illness and the medication, so she became much more irritable. I was able to shake it off, but I could tell that it hurt my dad. The help that they both had at home was invaluable during this time.
Mum then took a turn for the worst and was admitted to the ward at Ashgate for a week. Although the care was amazing, she was adamant that she wanted to be at home. Mum’s wish was to die at home and the Hospice did all they could to respect her wishes and try to make this possible. I could see that Mum was scared of dying, but she felt that when she was at home with her husband, nothing bad could happen to her.
The day mum was discharged from the Hospice we knew she was days away from dying. I came to see her after working a 12-hour shift. This was around 9:30pm, so I said hello and I gave her and my dad a kiss and told them I’d come back and see them tomorrow.
At about 11pm that same night, I received a call from my dad and I could tell from his voice that he was very distressed and so I quickly went back to see them. Mum was in bed but was very agitated. I kept asking her if she was in pain but she kept saying no. I think she didn’t want to tell us that she was in pain, or admit it herself, but I knew that something was wrong. She kept trying to get out of bed, but she didn’t have the strength to do so. I told dad to go and sleep as he looked exhausted. I lifted mum up but she couldn’t support herself; she was all slumped to one side. She looked dreadful, she was so pale. It was late at night and out of hours for the Hospice, so I called 111 and explained the situation, as the Hospice had advised me to do. I told them that my mum needed end-of-life medicine.
I’ve worked for the 111 service, but I didn’t realise how distressing it was to be on the other end of the phone with a very sick relative. You have to explain the situation to the first person, then you get put through to another person and you have to explain the situation again. They said we would have to wait around two hours for a district nurse to arrive, so my dad and I sat with my mum and did what we could to try and calm her. I tried not to show it, but I was very anxious waiting for a nurse to arrive. We couldn’t get mum comfortable; we couldn’t do anything for her. She kept saying, ‘I don’t know what to do, I don’t know what to do. I can’t… I can’t.’ And when I asked her how I could help, she couldn’t verbalise what she wanted. I think she kept saying she didn’t have pain, because she didn’t want to be given more drugs and become unaware of what was going on. But she was also realistic and she knew that towards the end that’s what would happen. She didn’t want to admit at that point that she was dying.
Just before the district nurses arrived, mum looked at me and said, ‘You need to ring the family.’ She had never spoken about dying before, so this really took me aback. It was horrendous. I rang my brother and mum’s two sisters, whom she was very close to and, by 2am, they had all arrived. She said her goodbyes to everyone and we were all crying.
The district nurses arrived and they were very good. They came in, gave her the medication and left. They said if you need us, you’ll have to call 111 again, but that meant waiting another two hours. As brilliant as the district nurses were, they simply didn’t have the time to stay and support us in this situation, and we really could have done with that support.
After they left, mum settled down and fell asleep and we all sat with her until the morning. When mum woke up around 6am, she was very agitated again, as the drugs had worn off. I really didn’t know what to do now as the doctor’s surgery wasn’t open yet and they only did home visits in the afternoon. We couldn’t wait that long. When it got to 9am, I rang the Hospice and, fortunately, a consultant was able to come and see us straight away. I was so relieved to see this consultant again, since she was the same lady who had been to the house before. I told her about our night and how we had really struggled.
Mum was still conscious at this point so the consultant explained to her that in order to give her round the clock care and be responsive to her pain, she needed to come into the Hospice. I told mum not to worry as we would all be with her. She was given some medication and an ambulance arrived to bring her into the Hospice.
That was the last time we spoke to her properly. Getting out of the ambulance, mum looked awful, not like herself at all. We were asked to wait a short while and then we were invited into her room at the Hospice. She was lying in bed looking very peaceful and she was like that for four days. I slept with mum every night, because I promised her that she wouldn’t be alone. There was no response from her for those four days. When it looked like it was her final hours, we called the family.
She passed away very peacefully and we were allowed lots of time to sit with her. The staff at the Hospice were very kind and understanding. It was such a comfort to know that mum would be taken care of from there on, and we knew that the Hospice would do this with the utmost dignity.
I have nothing but praise for the nurses and for everybody at the Hospice - the care staff, the housekeepers, the volunteers, the ladies in reception, everyone. The staff were there when we wanted them, and if we ever needed anything, they would sort it for us, but they also knew when we needed time to ourselves. They were absolutely brilliant.
The care that mum received was just excellent. It was barely an hour after she died that I had to go and thank the ward sister. There is such a lovely atmosphere here at the Hospice and it’s so clean. It’s a very calm place to be. Within weeks, we had received a phone call from the Supportive Care Team asking us how we were. None of us has received counselling yet, but it’s really nice to know that they are there to support us if we need them.
I think that even though my mum didn’t die at home, she died in the next best place. If my mum could have had all of the services, that can be offered at the Hospice, in her home, 24 hours a day, then she could have died at home where she wanted to be, and we could have received the support we needed during that time.”
"The Hospice really did all they could to keep dad at home for as long as possible."
Matt Bennett, from Whitwell, is a long-term fundraiser and supporter of Ashgate Hospicecare. His dad, affectionately known as Benji by his friends and family, died in the Inpatient Unit in January 2008. Benji was diagnosed with skin cancer at the age of 49. The cancer later spread to his lungs. Matt tells of how his family were supported by Ashgate Hospicecare both at home and in the Hospice.
“From the start, my mum and I were determined to keep my dad at home because we knew that’s where he wanted to be. He couldn’t imagine not being at home where he was close to his friends and family. However, after my dad had a fall and neither my mum nor I could help him up, we knew it was no longer safe for him to stay at home.
My mum was an excellent carer; she was there for my dad from the start. However, gradually, she became very exhausted. My dad had bloated to over 20 stone on the steroids that he was taking to treat his cancer and he would eat and nap and then wake up and eat and then nap again, for 20 hours a day, so my mum could never find much time to rest or sleep.
When the Hospice at Home Team started to come to the house to help out, my mum had time to sit down and have a cup of tea. When you haven’t had a break all day, having a cup of tea and sitting down for a moment is like winning the lottery. My dad had a good relationship with the Hospice at Home support workers and specialist nurses that came in. They visited him regularly over two or three months and really got to know his character. They could have a laugh with him. We’d also had all the specialist equipment dad needed delivered by the occupational therapists from the Hospice. The Hospice really did all they could to keep dad at home for as long as possible. His medication was reviewed daily and a doctor from the Hospice would come and visit him weekly to check on him. Anytime we needed to ask a question about my dad’s medication, we called the Hospice.
After my dad got ill, my two little girls, Bethany and Charly, didn’t come to stay as often because my Mum didn’t have as much time to look after them as well as my dad. When he started to get help from the Hospice at Home Team, it took the pressure off a bit so the girls could come and visit more. The more help we got, the more my girls were able to visit. My dad lived for his granddaughters. It wouldn’t matter how rough he looked or whether he’d just had his medication, their visit always brightened his day. We were worried that the girls would react negatively to grandad looking different, looking worse, and be nervous around him. Fortunately, they didn’t mind how he looked, and my elder daughter, Bethany, who was seven years old at the time, would always come over to grandad and gave him a big kiss and cuddle. Charly, my youngest, was only a baby at the time. Bethany was like a ‘mini-me’ of my dad; she always wanted to do what he did. They always went on days out together. He had done manual labour all his life, and so he and Bethany would dig holes together. She would help carry his tools. They would build garages… all sorts! She loved working with grandad. We knew she would eventually find his illness difficult.
The Hospice at Home Team were wonderful whenever the girls came to visit. Bethany would be very nosy and ask them all sorts of questions. What are you doing? Why are you doing that? Does that hurt, grandad? When they told her about what was happening, it gave her a better understanding of why Ashgate were involved. She could see the benefit of what the support workers and nurses did for her grandad. As she grew up, she was involved in a lot of the fundraising events we did for the Hospice. We can see now how important it was that my daughter was able to learn honestly, first-hand what was going on with her grandad.
We kept his illness from her initially, but he started to look worse I called the Hospice and said, “I don’t have a clue what to do, should I tell Bethany?” They advised me to be honest with her. It worked very well for us. They spoke to her too and gave her a children’s activity book on how to deal with illness and bereavement. Bethany would do the activity book and document the things she was feeling. All we had to do was read the book and we could see what she was scared about, and then we could talk about it. She’s a teenager now but she’s still got the activity book, and we’ve got lots of funny photos of her and her grandad in it. It’s very special to her.
When my dad was finally admitted to the Inpatient Unit, they provided my mum with a pop-up bed so that she could stay with my dad overnight. When my dad died, he had just fallen asleep. For me, it was reassuring to know that he wasn’t fighting to carry on, that he was able to die peacefully at the right time. Ashgate staff were very professional and caring in the way they dealt with my dad after he died. It’s those kinds of things that really left a lasting impact on us as a family. The staff went out of their way to make my dad comfortable, both at home and at the Hospice. We’ve continued to fundraise as we feel this is a vital service for the people of North Derbyshire.
Ashgate was amazing, but I think that a 24/7 Hospice at Home service will be really valuable for so many people in the community. My family, and especially my mum, could have really benefitted from extra support at night and over the weekends when dad was at home. Even though my dad received excellent care at the Hospice, it would have been great if he could have stayed at home, where he wanted to be, right to the end.
“I’m beginning to feel like my old self again and I can’t thank Ashgate Hospicecare enough for that.”
“Finding out I had breast cancer was absolutely devastating. I was only 49 and had been selected to go for a mammogram as part of an NHS trial. Telling my two teenage children was the worst part. Fortunately, my husband is wonderful and has supported me all the way, taking me to every chemotherapy and radiotherapy appointment. Even so, the months of treatment to get rid of the cancer proved much more physically and emotionally draining than I had expected. By the end of it, I had lost all of my hair and physical strength and, with it, much of my confidence."
"Once it was all over I breathed a huge sigh of relief. I thought, now is the time for me to start to feel better and to start my life again. A colleague had breast cancer around the same time as me. She told me about her diagnosis two months before I got mine. She knew a little bit about lymphoedema, a lifelong condition that can sometimes occur after receiving cancer treatments such as radiotherapy. You experience uncomfortable swelling in the body due to a build up of excess fluid, sometimes you can be carrying litres of extra fluid.
A few months after the radiotherapy, I’d noticed that my arm and hand was getting a bit swollen too so I upped my arm exercises, as I knew that could help to move the fluid around. But it wasn’t just my arm, my left breast had also become really swollen. I found it difficult getting bras to fit because one breast was so much bigger than the other. It was also very painful and tender. I was embarrassed about it and so I started to wear clothes that were baggy to cover it up and so that people wouldn’t see I was lob sided. I was so self-conscious. My hair was still only just starting to grow back, so I felt really down, not looking like myself at all.
When some colleagues at work pointed out that my hand looked swollen, I decided that I had to get some medical advice. I was referred back to the Breast Care Unit at the Royal. I was very emotional going back there because I hadn’t been since my last treatment. As well as that, I was nervous about what they were going to say about my arm. I was hoping that it wasn’t lymphoedema, as I knew that once you had it, you were stuck with it for life. I went to see a doctor I hadn’t seen before. He told me in a very matter of fact way that I had lymphoedema, and it hit me really hard. I didn’t want to believe it and I almost burst into tears there and then! I wasn’t advised on who to see next; I felt like I had to go away and deal with it all on my own. The doctor told me that he would refer me to the lymphoedema clinic at Ashgate Hospicecare, but that I shouldn’t expect to be seen for many weeks. I went away feeling really lost.
Fortunately, it wasn’t long until my appointment at Ashgate. Although, by this time, I didn’t think at that the Hospice would be able to do much for me. When I walked into the Hospice I didn’t know what to expect. I was feeling very emotional, embarrassed and uncomfortable.
The receptionists were lovely and they put me at ease straight away. I even recognised one of them, so we had a good catch up! I then met my lymphoedema nurse, Lisa. She told me that the clinic has been here about 17 years, which surprised me as I didn’t know anything about it! Dr Parnacott was there to assess me and I was surprised to find that the whole team wanted to start my treatment that same day. They tried on lots of different types of moisturiser and told me that the most important thing was to look after the skin on my arm and breast. They also gave some compression garments and Lisa taught me how to massage the skin to move the fluid around. I do this for 10-15 minutes twice a day. I have noticed a massive difference in the amount of swelling and it’s no longer uncomfortable.
However the best thing about coming to the Hospice has been the emotional support that I’ve received from Lisa. She understands how difficult I’ve been finding things and we could chat each week as she did my massage. Over the weeks, I started to really look forward to coming in; getting here a bit early and enjoying a cup of tea and a chat with the receptionists. It never felt very medical at all.
I’ve been coming here for a few months now and I can say that the lymphoedema clinic has been truly been life changing. The staff at the Hospice are all fantastic and their praises should be sang from the rooftops! Everybody who supports the Hospice ought to know what a wonderful job the Lymphoedema Team do and how many peoples’ lives they are helping to improve every day. Not only have the Lymphoedema Team helped to inform me about lymphoedema and helped me to bring it under control, but they’ve also helped me to build my confidence back up. I’m beginning to feel like my old self again and I can’t thank Ashgate Hospicecare enough for that.”
“Lymphoedema hasn’t become a burden for me. The whole team deserve a lot of recognition for the brilliant work they do.”
Sally was told she had lymphoedema after having breast cancer. She experienced uncomfortable swelling in her left arm. Fortunately, an early referral was made to Ashgate Hospicecare where the Lymphoedema Team have been helping to decrease the swelling so that Sally can use her arm again and live a normal, comfortable life with lymphoedema.
“I discovered I had a lump in my breast a few years ago. I had chemotherapy first, then a lumpectomy, and then I started a course of radiotherapy. After all my treatments, I was given the all clear in terms of the cancer. I felt very lucky. It wasn’t until a few months later, at my final hospital appointment, that I was told I had lymphoedema and was referred to the clinic here at Ashgate Hospicecare.
I had swelling right down my left arm to my hand and fingers so that it was puffed up and my knuckles had disappeared. It was very uncomfortable and I couldn’t use it for much. I thought I would probably be lumbered with a swollen arm for the rest of my life.
I live just down the road from the Hospice and I know how well they care for patients here and what a friendly atmosphere there is here. When I first came in, I was greeted very warmly by the receptionists. I met the Lymphoedema Team here and they measured me for a compression sleeve, which has really helped to bring down the swelling. More recently I’ve been using the automatic massage machine, which is wonderful.
Mandy, my Lymphoedema Technician, always makes me a cup of coffee and we have a chat about how I’m doing and whether the swelling is improving. Then, I place my arm inside the lymphassist machine and Mandy sets the timer for me. It’s very relaxing; I like to just sit here and enjoy the views outside. Mandy always opens the blinds for me so I can watch the birds on the bird table.
I have to say, the Lymphoedema Team are all fantastic. You get a very personalised service here. It’s really lovely place to come and I can see that with the care and treatment I’ve received at Ashgate Hospicecare and with the positive attitude of everybody here, my arm is definitely improving. I always look forward to coming here.
I still have to be careful with my arm and I can’t carry heavy things with it, but I am able to use it again now. I have seen fellow lymphoedema sufferers who are much worse off than me, they have a lot of pain or mobility issues, so I feel very fortunate that mine never got out of control. I think that was to do with it being identified very early and being dealt so well at the Hospice.
It’s so important that everybody, members of the public and healthcare professionals, know about lymphoedema so that it can be dealt with as soon as possible. The team here are also to thank for their work in educating other healthcare professionals, those in hospitals and nurses out in the community, about how to recognise lymphoedema so they can refer people to Ashgate. They’ve helped massively to increase awareness of the condition. I’ve found that, since coming to the Hospice and being given all these different treatments and ways of dealing with the condition myself too, lymphoedema hasn’t become a burden for me. The whole team deserve a lot of recognition for the brilliant work they do.”
"The world is quieter and less colourful without her."
Dan’s mum Linda was diagnosed with pancreatic cancer in 2017. Linda died in the Inpatient Unit at Ashgate Hospicecare in late 2017. Dan has pledged to raise thousands of pounds in memory of his mum, Linda, to ensure that more brilliant mums and their families can receive hospice care when they need it.
“My mum, Linda, lived a great life and she had a big impact on a lot of people. She had lots of very close friends who she cherished and who brought her genuine happiness. She was a kind and warm-hearted person and she taught me that you never get a second chance to make a first impression. Mum had been a constant throughout the whole of my life, supporting me every step of the way.
She was a hairdresser passionate about forging strong relationships with her clients. Whenever they came into the salon, they would talk about their lives and their families with her. She made every person who came in feel special.
When mum told me she had pancreatic cancer a year ago, it was very difficult to take. But her positive attitude was infectious and she took us all with her in thinking ‘what will be will be’. In the meantime, we all agreed to make the most of the time we have together.
She was determined to fight the cancer and so a few months later, mum braved the surgery to have her pancreas out. Unfortunately, this did not get rid of the cancer and she got progressively more unwell.
When mum was first admitted to Ashgate Hospicecare it was really hard for us, but we knew that this was the best place for her. She was in a lot of pain at that point and so we knew that she needed specialist hospice care.
On every one of the occasions I visited mum at the Hospice, I was made to feel very welcome. The staff werealways attentive to my needs as well as mum’s. One moment I remember in particular was when I was sat in the reception area reading my book, giving mum a bit of rest from visitors, and one of the reception staff made me a cup of tea. The same scenario occurred a few days later and the same lady came up to me and said ‘strong tea with no sugar?’ I nodded and two minutes later she came back through with the drink.
Another thing that was very important to me was that the doctors would always look me in the eye whenever they were giving information. Naturally, the information that they were giving was invariably difficult, but they came across as very honest and caring.
Although mum was in pain, she was made as comfortable as possible and that was thanks to the people here. So much time was given to help mum readjust the position she was in on the bed, to listen to her and to understand how she was feeling. The staff did all they could to make things better for her. Mum wanted her family and close friends around her and, whenever it was possible, they helped to make that happen.
She lost her appetite whilst she was there, but she did enjoy the lemon sorbets. Even if it wasn't on the menu that day, the staff did what they could to try and find one for her.
About 250 people came to the service we had for her life; a testament to the strong friendships that she made throughout her life. My brother and I spoke about the good times and the life lessons that mum had taught us and as people were leaving the church, they told us that they couldn’t agree more with what we had said and told us lots of amazing stories of my mum that really resonated with them.
Although I miss mum today and have missed her every day since November, I feel very lucky to have had 38 years with her and for that I am hugely grateful. The world is quieter and less colourful without her.
Her legacy for me is to always believe in myself and to be courageous, to regularly go beyond my comfort zone and be the best I can possibly be. That’s why I’m running the London marathon. It will be very challenging, but I want to do it to prove to myself that I can do it, and I want to do it for my mum.
I want to raise as much money as possible to ensure that more brilliant mums and their families can be cared for by the Hospice. It’s important to me to give this back as a small gesture of thanks to every member of staff who helped to care for mum and for being so kind to us. We want to say thanks to the staff for treating mum with great care and respect and for their efforts and attention. I know that by raising this money I’m helping to ensure that others can receive such excellent care. In the circumstances, you couldn’t wish for more for your mum.”
“The short time we spent together at Ashgate Hospicecare was very special. It gave me the chance to say goodbye to Sarah properly.”
“My wonderful wife, Sarah, had a brain tumour removed at age five. This caused her to lose most of her sight. 39 years then passed until we received the terrible news that the tumour had returned. Sarah’s speech began to slur and she lost the use of her right hand. She also had trouble walking."
"We began having visits at home from two lovely Ashgate Hospicecare physiotherapists. Their approach was incredibly kind and supportive. They persevered with different walking apparatus until we found the right solution for Sarah. We also had visits from Ashgate's Hospice at Home service. They arrived at the house to care for Sarah, giving me and my sister, Sarah’s main carers, a much-needed break for a couple of hours a week.
Unfortunately, just as we were making progress with Sarah walking independently again, she acquired chest and urine infections and was readmitted to hospital. Sarah had commenced a course of chemotherapy whilst she was at home and had been having increasing swallowing difficulties causing her to choke on food and drink and her own saliva. This was a very upsetting time for us all, as you can imagine. It was around this time that we had a discussion with one of Ashgate’s palliative care nurses who told us that we could bring Sarah into the Hospice.
The moment we walked through the doors at the Hospice we were greeted warmly. Sarah was immediately made comfortable and given some lunch and we were all provided with a welcome cup of tea. Later on, we were given some privacy and this is when we received the devastating news that the results of Sarah’s MRI scan revealed a marked growth in the, now untreatable, tumour. At this point, we found out that Sarah only had weeks to live.
What happened next was truly amazing. Sarah was given her own room on the Inpatient Unit and I was given a fold up bed so that I could stay with her as much as I liked. I simply cannot put into words how grateful we were for this. Sarah had been very anxious and upset over the last couple of weeks in hospital, but she immediately became so much more relaxed and peaceful. She knew that Ashgate was the perfect place to spend her remaining days.
By this time, Sarah had almost completely lost the ability to speak. We set about discussing her wishes for her funeral and burial and Sarah managed to tell us that she wanted donations to Ashgate Hospice instead of flowers. I suggested that the chaplain bless our marriage and Sarah was thrilled about this idea. The chaplain told us it would be an honour to do the blessing for us and he instantly got things together to hold the special service, with our music, in the beautiful little round chapel at the Hospice. The chef went to lots of effort to put together a personalised cake for the two of us, which we ate after the service. It was very touching.
Sarah’s condition deteriorated until the point when she was almost unable to communicate, even by squeezing hands or nodding. I’m visually impaired myself, so I often needed somebody with me to help me work out what Sarah needed. Eventually, she could only groan when she was uncomfortable or needed something, but the staff were incredibly patient and made every effort to work out what Sarah wanted.
The staff at Ashgate Hospicecare went to great lengths to make sure Sarah was comfortable. No matter how many times I pressed the buzzer to call them, they responded with the utmost care and attention. It's hard to single anyone out because they were all so fantastic. However, one healthcare worker kindly washed and cut Sarah's hair whilst she made sure I was settled in a recliner with a cup of coffee. This was just what I needed after a sleepless night spent worrying about her. Afterwards, the care worker gave me a little box with a golden heart and a lock of Sarah's hair in it to keep. Another nurse gave Sarah nice things to taste on a sponge, like Baileys and crisps, as she could no longer swallow anything. The care was really above and beyond anything I had expected. And of course, the staff were all very supportive when Sarah died.
The short time we spent together at Ashgate Hospicecare was very special. It gave me the chance to communicate with Sarah in a beautiful way and to say goodbye properly. Instead of being stressed having to care for Sarah, I was able to say lots of special things and share precious memories with her. We listened to a recording of our wedding and my sister went through the wedding album again and described all the pictures to us. Sarah passed away peacefully with me holding her and telling her how much I love her.”
"Ashgate helped us to support mum’s decision to stay at home. They made a very difficult situation that bit less difficult."
Eileen died in her home in January 2018. Her daughter Shereen spoke about the support that herself and her brothers, Darren, Chris and Rick, received from Ashgate Hospicecare that enabled them to care for their mother at home.
“Mum had lung cancer for nearly six and a half years. She had been suffering in silence for quite a while and began to decline further in her last year. She kept getting ill but she would always put it down to colds or a bug and she would always say that she’d be better in a week or so. She didn’t like going to the doctors, so although she was very poorly in her final few months, she never went to see her GP.
About a month before mum’s death, we could see that she was going downhill, so me and my little boy, who was nearly two at the time, moved in with mum help look after her. Shortly after, she contracted sepsis and was taken into hospital for a week. She recovered somewhat and was sent home. Fortunately, although all of us live far away from each other, we were able to come together to help care for our mum in her final weeks. There was about a week or so when we had to care for her at home but had no idea how to do it. It felt like we were making it up as we went along.
Once mum was back home, she kept saying that she wanted a bath. We phoned the district nurses and asked them if we could get her a bath lift and they directed us to Ashgate Hospicecare. Soon after, the occupational therapists from the Hospice came out to assess her. A few days later, they had installed a bath lift.
Unfortunately, mum declined too quickly to have a bath but it was important to us that Ashgate had listened to what mum wanted and moved on it very quickly, even though there was a chance that she wouldn’t be able to use the equipment. As we were finding it more and more stressful trying to figure out the best way to help mum without causing her more pain, we rang the Hospice again. One of the palliative care nurse specialists spoke to us and we explained that we needed more help to care for mum.
The nurse specialist told us that we could either bring mum into the Hospice or we could have a hospital bed delivered so that she could stay at home. We knew that mum’s wish was to stay at home, so we asked for the hospital bed and told the nurse that we would like help to support mum at home if possible. The nurse got in touch with the right departments at the Hospice to get this sorted. The communication between the teams was excellent.
Within a few hours, the occupational therapists arrived at mum’s door with the bed. We were amazed at how quickly this happened. The team were polite and professional and they quickly dismantled mum’s bed and assembled the hospital bed, dressing it in mum’s bedding, which was a lovely touch. They used a hoist to carefully lift mum into the bed, which was much less painful for her than us lifting her. It was such a relief to have somebody come in who knew what they were doing. We were feeling really lost at that time so it was exactly what we needed. They kept mum informed even though she wasn’t very responsive at that point, and they made sure mum was settled before they left.
Knowing that we could ring the Hospice if we needed to really took the pressure off. We knew that if we were in trouble, they could advise us on what to do. Since the Hospice got involved in mum’s care, we received phone calls everyday checking on our situation. The staff really went above and beyond. One of the nurse specialists went to extra efforts to ensure that we had a nebuliser before the bank holiday weekend. Mum was really struggling with her breathing, so the nebuliser was vital for delivering mum’s medication to help her breathing.
On the morning that mum died, the nurse specialist had phoned to ask how she was doing. We said that mum’s breathing seemed raspier and that she didn’t look completely settled, so the nurse came out and gave her some medication. This allowed mum to settle, and she died in peace a few hours later. It was a very special moment for us, and we felt at ease because mum looked comfortable, relaxed and pain-free.
The nurse came to the house once more that day to let us know about the family support services that the Hospice offers. My mum was very close to her granddaughter, Chris’ daughter, who is only ten years old, so it’s nice to know that the Hospice can offer counselling and support for her too if she’s struggling with her grandma’s death.
Ashgate helped us to support mum’s decision to stay at home. They made a very difficult situation that bit less difficult. Having specialists involved, professionals who understand end of life care and know what they’re doing, made all the difference. We didn’t know that Ashgate brought equipment to peoples’ homes but it made such a difference to our family. The home care from all the teams at the Hospice has been phenomenal. They didn’t take over; they just helped us to care for mum as best we could.
Ashgate Hospicecare were involved in mum’s final week. The only thing we’d do differently if we had our time again would be to get the Hospice involved sooner. That’s what I would say to people – get in touch with Ashgate Hospicecare as soon as possible as they offer many different services to help you care for your loved one.
We will continue to show our support for the Hospice by donating our unwanted items to the Hospice’s donation centre. We cannot praise enough the care and support we received from Ashgate and we would urge everyone to get involved in supporting the Hospice.”
“Ashgate Hospicecare allowed us to make the last days count and still create memories.”
Lucy Piekarski was only 15 when her father, Tony Piekarski, known to friends and family as Tony Pie, was diagnosed with prostate cancer. Lucy reflects on the treatment Tony received from Ashgate Hospicecare, both at home and in the Inpatient Unit.
“I remember coming home one day in November, aged 15, to my Pap sat on the sofa. He wanted to talk. I knew he had been for some scans, but I never believed there would be anything wrong with him.
When I heard the words “stage 3 prostate cancer”, everything turned to slow motion. I never thought that what had happened to my Mum, who was my age when she had to experience her mother going through cancer, would happen to me. I kept pretending all the while that my dad would be fine.
From that day onwards, we all did what we could to make every day count and make sure that my Dad’s promises were fulfilled. He suffered with his illness for five years in all. Throughout that time, we gave up more and more of our commitments so that we could care for him. My education was always a priority with dad, so being at school during this time was very difficult for both of us.
We had always received regular visits from the Hospice at Home Team, but my brave-faced Papi had always refused any extra visits. It wasn't until he told us that we needed to start making decisions, that we realised he was in need of 24/7 care and pain symptom management and needed to go into the Inpatient Unit at the Hospice. It was a relief for our whole family when he came in. During my Dad's time here, The Ashgate Angels, as we liked to call them, were there to answer to his every need. They knew what to do better than us and they weren’t scared like us. They made what was an alien situation to us feel very normal.
Our family were able to rebuild many of the bonds that were strained over the years by the stresses of care-giving. When he came into the Inpatient Unit, we were able to spend valuable time together as a family. I was able to be a daughter again and my dad was able to be a dad. Before this, we had tended only to reminisce about the good old times together, however Ashgate Hospicecare allowed us to make the last days count and to still create memories. My dad was able to leave this world in the way he wished; pain-free and in peace with my mum, his best friend, by his bedside. I still have a broken heart, but I enjoy visiting the Hospice's beautiful gardens to speak with him, because I truly believe he is visiting me there too.”