"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.
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 me nor my mum 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 eat and nap for 20 hours a day. 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 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 grandaughters. It wouldn’t matter how rough he looked or whether he’d just have 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 eldest 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 him 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 nosey 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 and 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 were 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 gave me the chance to communicate with Sarah in a beautiful way and to say "goodbye" properly."
“My wonderful wife, Sarah, had a brain tumour removed at aged five. This caused her to lose most of her sight. Thirty-nine 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 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. However, it was around this time that we had a discussion with one of Ashgate’s palliative care nurses who communicated with the ward very efficiently and told us that we could bring Sarah into the Hospice.
As soon as we walked through the door at the Hospice we were greeted by smiling faces. 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. We spoke to Paul who told us it would be an honour to do the blessing for us. 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. This was very touching.
Sarah’s condition deteriorated until the point where 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 Sarah.
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 so 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.”
“Not only did the Advice Line listen to me, they heard me.”
In October last year, Ashgate Hospicecare started an Advice Line pilot scheme. This ensures that a Palliative Care Specialist Nurse is available to talk 7 days a week from 9am – 5pm. They provide advice and support to patients, carers and health and social care professionals.
Jenny, who comes into the Day Hospice once a week, told us how the Advice Line helped her. A few weeks ago, due to her pain relief being reduced, Jenny experienced excruciating pain on a Friday morning at home. So, she decided to call the Hospice.
“I didn’t want to phone 999, so I called the Hospice and wasn’t sure if anybody would pick up. I was in a lot of pain and my husband was very worried about me. Fortunately, my call was put through to the Advice Line and I have to say, not only did the specialist nurses listen to me, they heard me.
I have cancer in my oesophagus and it’s untreatable, so I tend to downplay my pain levels with the GP. I know I’m untreatable and so I sometimes feel like I’m a burden, I feel like there are people who might need help more than me. However, at the moment when I called it really felt like an emergency. I was in so much pain.
When I spoke to the nurses they really made me feel like I mattered. They made me feel like a person and that I should be treated as such, rather than just another phone call. The Advice Line nurses told me who to call and in what order, and they endorsed my need for more medication. I wouldn’t feel comfortable making my own decisions about how much pain relief to take or when to ask for more.
They said they’d also call me the next day to see how I was on the Saturday and, much to my surprise, they did! They then called me each day until I was due to come back into the Day Hospice on the Tuesday. It was unbelievable. I have to say that they were the most kind, compassionate and knowledgeable team of people I have spoken to.
I have a great support base in my husband, my church and my friends, but when you’re in so much pain and don’t know what action to take, it can sometimes feel like you’re abandoned on the medical side of things. I know the NHS do what they can, but unfortunately they can’t offer the kind of personal care that I have received from the specialist nurses at Ashgate Hospicecare.
It is a miracle that the 7 day a week Advice Line came about just at the moment when I needed it. I’m so grateful for their help and I can’t stress that enough. It’s wonderful to feel so supported. I feel like I matter and I am more honest now about how I’m feeling and what kind of pain relief I need, plus I know exactly who to call now if I need them. I also know when to call 111 and feel less afraid to do that if needs be. The nurses told me that I can call the Advice Line 9am-5pm, seven days a week and it’s wonderful to know that they are there. It’s not until someone says that, that you really feel that you can call them.”
“The care feels very personal.”
When David Williams, now aged 69, first came to Ashgate Hospicecare, his quality of life had been deteriorating quickly. He told us about what it was like to be on the Inpatient Unit. Many months later, we had a catch up with David in the Day Hospice where he comes in one day a week.
In his first interview, David recalled the way our fantastic clinical staff did everything they could to make his time here as enjoyable as possible.
“I was sent to hospital where they announced that I had a brain tumour. After, I was sent to another hospital where they did a biopsy, they then arranged for me to have radiotherapy. I had 30 days of radiotherapy and that was it. I was told to come back in a few weeks to talk about chemotherapy. It was never fully explained to me why, how, what the effects are, what is going to happen to me, how it is going to affect my life...Luckily, I have a very supportive sister who is a retired ward sister. She was able to give me more information about it all. I’ve only ever had two stints in hospital before, so I had no idea how the medical system works!
When it finally dawned on me that I was terminally ill, it filled me with utter despair. I thought, What have I done to deserve all of this? I’ve always been somebody who is very healthy and does things every day of the week without fail, whether that’s walking, outdoor trips, reading, writing, or cycling etc. I bought a campervan when I retired and used to spend the summer months touring around Europe in it. I can’t do that anymore. I like to write books and research local history. I can’t do that anymore. I can’t go down to the record office and pore over 19th century scripts. I was hoping to organise an archaeological dig this winter, but I can’t now. It’s all gone. That’s when I decided to register with Dignitas, the Swiss euthanasia group. I joined it and paid the £140 joining fee. I felt so useless at that time.
Eventually, after the radiotherapy, they sent me back home to my little cottage in the Peak District. I was doing alright there for a few weeks, but then I started to have seizures. It got so bad that I was having up to 20 in a day, almost one every hour. One evening I came up the stairs, had a seizure and fell backwards down the stairs. I landed on my back, smacked my head on the wall and was taken to hospital.
During that time, I was losing weight and was constipated. When I would feel a seizure coming on in my arm, I’d start to press the buzzer before my arms and legs were tied up in knots. Each seizure didn’t last long but it was painful. One day, the physiotherapist said we should go out and stretch my legs. I got 10 feet down the corridor and my muscles seized up so I couldn’t stand up. I felt like I couldn’t do anything at all except lie there. I was completely debilitated.
After a referral to Ashgate Hospicecare I was moved in very quickly. They explained things to me and gave me medication that sorted out the seizures within a few days. I no longer have to sit with my finger on the buzzer constantly, so I can relax more.
I’ve improved a lot since coming here, I feel like I get looked after properly and my quality of life is much better. The ethos of the place is completely different. Many of the staff are local and they take the time to have a proper chat with you. The care feels very personal. I’ve already lectured some of the staff on travel and history! One of them even cut my hair the other day.
My friends and sister visit me often and I can sit outside on the terrace when the sun is shining. Plus, the food here is wonderful! You get cups of tea, cakes, jelly... even beer! I’ve put the weight back on now and I’m regular! Even though I still can’t do everything I used to do, I feel assured that the hospice staff will do everything they can to ensure my life now is as painless and dignified as possible.”
Months on, and David is now a regular visitor to the Day Hospice. Patients typically come in for one day a week. As well as running a number of different activities for the patients, which often involves members of the local community coming in to give talks and run sessions, attending the Day Hospice also gives patients the space to socialise and provides respite for family members, friends and other carers. This is particularly the case when a patient needs constant or complex medical attention. There is always a nurse or a consultant at hand, as well as complementary therapies such as massages and physiotherapy services. We took the opportunity to ask how David is feeling now, almost a year since he was first diagnosed.
“I’ve been feeling better since coming to the Day Hospice. I’m not experiencing any pain and I don’t feel ill. I’ve got hearing aids and now I just need to get my eyes sorted out. It’s better than sitting at home doing nothing because I can chat to people here. The staff are all friendly. Tim, the volunteer Chaplain, always makes me laugh! There’s another chap who usually comes in and sits next to me and we have a good discussion about 1960s and 70s music. In a moment, I’m going to get one of the Day Hospice volunteers to come over and cut my nails. Each week, I usually spend an hour or so with the physiotherapist in the gym, cycling and so on. Apart from that I sit and talk and have my lunch and they fetch me coffees and teas and biscuits. It’s little things like that that that mean it’s nice to come here.
If Ashgate Hospicecare hadn’t managed to sort out my seizures, I’m sure I’d be dead. I’ve not had any seizures since coming here. My leg’s still not quite right, but I’m not in any pain. I can walk, well, hobble, using the zimmer frame. If I don’t use it they tell me off!
As much as I would rather not be in this position, I can say that the hospice has been wonderful. When I was in the Inpatient Unit I still managed to go to the pub – one of my friends would fetch me and we’d go out. The hospice allowed me to do that even when I was very ill in the Inpatient Unit. Without being able to do things like that I would have been suicidal.
I’m a bachelor and I’ve always looked after myself and done my own thing. Having to rely on other people is somewhat odd, but now I think, I can’t do this by myself, somebody has to do this for me. I have carers from an external company coming into my home who are great. I’ve also had a stair lift fitted so I can get up and down the stairs. It’s been really necessary to have all the extra equipment. It’s wonderful to still be in my own home. I’ve had my kitchen and bathroom redone in recent years, so I would never want to move out. My neighbour, who is a longtime friend has also been wonderful throughout this time.
Two weeks ago my brother and his partner came up for the weekend so I didn’t come to the Day Hospice that day. I’m in here most weeks, although in November I’m planning on going down to Brighton to stay with my brother and have an adventure! I’ll be going to my sister’s again this year for Christmas.”
"Ashgate Hospicecare were really there for me during the hardest time."
When my mother, Vera, was diagnosed as terminally ill at age eighty-five, I was planning on spending the summer with her, but unfortunately she passed away in spring this year. It was all quite quick. We had a lovely Christmas and the New Year together, but after that she went downhill very quickly.
I lived 50 yards away so I was visiting her every day: cooking meals, doing her medicine, calling doctors, but it was clear that she could no longer live by herself. It was at that point that the health professionals, including those at Ashgate Hospicecare, got involved and we decided that she should move in with me.
This took much longer than expected as I needed to make some changes to my house to accommodate her needs. By the time mum moved in, her condition was really bad and she was only here for three and a half weeks in the end, but Ashgate Hospicecare delivered all the specialist equipment mum needed.
She had a reoccurrence of cancer. After a successful operation a few years ago to remove a womb cancer, she started to experience pains again. After many tests, they finally found a massive tumour in her abdomen, but by that time it was too late.
Mum received radiotherapy, but eventually she couldn’t be treated that way anymore. She was in a lot of pain from the tumour and it was then that we realised mum would need palliative care.
It was really stressful for me even with all the help the nurses provided. Fortunately, my employer allowed me time off so I was able to care for mum full-time during her final weeks. Even so I had no spare time. I pretty much devoted all of my time to looking after her. We used to go out for walks, but we couldn’t do that after she got much worse.
At first I was trying to get her to sit with me in the living room, but that didn’t last long until she was pretty much confined to the bed. She just didn’t want to do anything. It’s only a short walk to the bathroom but she was even struggling to do that. She had absolutely no strength, and she wasn’t eating. The cancer was in her stomach and you could see it bulging, it was really distressing to see. Trying to feed her was difficult. I didn’t know if I was doing the right thing by encouraging her to eat because, after all, it’s just prolonging the inevitable. It’s hard to describe just how difficult it is for one person to care for someone in that condition.
The worst time for me was when mum had a bowel movement just after the carers had been in to see her and wash her. I really needed help then because she was in such a state. In the end I had to get her in the shower by myself which was distressing for both of us. Mum still knew exactly what was going on. I got her sorted out, cleaned up, and changed the bed clothes and her nightie, but then an hour later a similar thing happened. As you can imagine, I was absolutely exhausted.
After that episode, I contacted Ashgate Hospicecare and they arranged for nurses from other services to come in on a more frequent basis. The speed of mum’s decline was such that this was crucial. By that stage you could tell that she had really given up and was happy to let the nurses do whatever was needed. At one point, I had four different people in the house at once caring for her! I thought it was amazing the way everybody dived in to help. However, there was so much going on that I started to lose track of who was doing what. It was out of my hands and quite bewildering, but I was certainly glad it was happening.
Ashgate Hospicecare were really there for me during the hardest time. One of the nurses started coming once a week for a whole afternoon. It wasn’t for many weeks, of course, but that was an essential relief. It gave me that respite I needed. Even though I was only going out to do the shopping, just being able to get out of the house for an hour or two was such a help. It was getting so difficult by that point; I don’t know what I would have done without that time to myself and I’m really grateful to Ashgate for that.
Even with that extra help, over the course of those last weeks, my energy levels seriously declined. I wasn’t sleeping properly as I was getting up to check on mum every few hours throughout the night, just to make sure she was alright.
Different nurses would come in everyday from different services including Ashgate, but then in the last week we started to see the same people more often. It’s nice to see those familiar faces, plus they knew mum’s condition and could make better judgements about what kind of help she needed. I phoned 111 a few times. They provided a decent service but it’s obviously not the same as being able to rely on 24-hour support from the same people.You end up having to explain the situation every time.
Mum didn’t want to go into a hospice or a home, so I’m fortunate that she was able to stay at mine until the end. However, the care she needed was too much for me to deal with on my own. Ashgate Hospicecare do such an amazing job, I can’t actually believe there are just seven support workers in the Hospice at Home team! We would have really benefited from a 24/7 service where we could have seen the same nurses whenever we needed them - at nights and weekends and those really difficult moments, but they obviously need more funding and more staff to make that service available.
"Thank you Ashgate Hospice for letting this happen. Thank you for extending Terry’s life and thank you for giving us the holidays of a lifetime.”
Emma Wilson, from Chesterfield in Derbyshire shares her story of the care her husband, Terry received at Ashgate Hospicecare. Terry Wilson, 53, had been suffering with bowel cancer for nearly three years. In July 2015, he received the devastating news that the cancer had spread to his kidneys and he only had three months left to live. Following numerous admissions to hospital, Terry was put in contact with Ashgate Hospicecare in July.
Emma said, "Terry always thought hospices were for older people, but having spent a week in here he couldn’t believe how caring all the staff were. From the dietitians to the rest of the staff, they were all amazing.
Once Terry's symptoms were effectively managed, he was discharged from the hospice and returned home after just 1 week on the Inpatient Unit. Terry was able to have a week in Cornwall and a weekend in the Lake District."
"The last holidays we had were amazing, Cornwall was one of Terry’s favourite places. He'd been going down to Cornwall since he was a child, and he and I always went once a year without fail. So, our wish of going back there, as a family was able to go ahead and I will never forget it."
"The two holidays that we had post Terry's admission into Ashgate, were to be the last of his life. But, had it not been for his week in Ashgate Hospicecare, they wouldn't have been possible, so for this, we will be forever grateful. The Hospice turned Terry's life around."
"Memories are not only in your mind but are also on photographs and I have lots of memories of Terry on our last holiday in the Lake District, mostly with our little grandson, Max. I look back on these photographs and sometimes I'm in tears and other times I just look back and think, "Gosh, thank you Ashgate Hospice for letting this happen. Thank you for extending Terry’s life and thank you for giving us the holidays of a lifetime."
In November 2015, Terry was readmitted to Ashgate Hospicecare and on the 15th of November, he sadly passed away.
Emma said, “Ashgate Hospicecare gave us all the facilities we required to be able to not leave Terry’s bedside in his final few days. None of us returned home for around 4 days, we had food, beds and showers. It was such a relief to know we had everything there that we could possibly need. This enabled Terry’s close family to be at his bedside during his final days which was one of his final wishes."
"I cannot fault anybody at this hospice. It is clean, it’s tidy, it’s well supervised and the nurses were fantastic with Terry."
"I’d like to say thank you to everybody at Ashgate Hospice for what they did for us whilst we were here and the support and care they have given me since. Thank you everybody."
Since Terry died, Emma, along with family and close friends have been heavily involved with Ashgate Hospicecare and its fundraising department. She took part in last year's Sparkle Night Walk and has re-entered for this year's as well.
Emma said, "My son along with close family friends who also have similar experiences have organised an annual golf day to raise money for the hospice and continue to plan this years event as we speak. I've personally done a few sponsored walks, but one of the best I went on was the Sparkle Night Walk. It was amazing and the atmosphere from start to finish was so much fun with lots of laughter whilst raising money for a great cause."
My mam, Dorothy Briggs.
My mam was diagnosed with lung cancer in September 2012 and it was ‘controlled’ until April 2015 when we were told it had spread to her lungs. Mam took it quite well but over a period of 2/3 months and her living alone, it became obvious she wasn’t coping well and wasn’t taking her medication correctly. The local district nurse, social services and palliative care nurses became involved and mam had all the equipment possible to help her cope at home. She was self-administering medication including morphine but became confused in her daily life and with her medication. She was admitted to a care home for respite care but unfortunately had a fall and broke her hip and was then admitted to hospital. It was a terrible time because we all thought we had lost her there and then. After an operation and a number of weeks in hospital it was decided she required special care and that was our introduction to Ashgate. Again we thought – hospice - end of life – it was a very scary time. Mam was very poorly
From the moment we arrived at the Hospice it just felt so right. All the staff were fantastic and fully explained what they were doing and why. After a few days mam started to look a little better and was more responsive and one day when I walked into her room she was sat up in bed looking like her old self. The nurses were always in and out, having a laugh and joke with mam and us. It was great, a real homely atmosphere; even to the extent that mam thought she was in another nursing home and kept saying that she would like to stay for good. One time when one of my brothers was visiting mam, it was a lovely day and the nurses opened up the French doors of her room and pushed her bed out into the court-yard so that they could chat and have a cup of tea in the sunshine. Soon after that day she was able to be hoisted into a wheelchair and we would push her around the beautiful gardens and sit in a quiet corner and talk or just take in the tranquil surroundings.
The gardens are always kept so beautiful. Mam loved Ashgate and everyone she came into contact with there – doctors, nurses and the volunteers who provide their time so freely. Everyone was so friendly to mam and to us. After a few weeks mam had to leave Ashgate as she was as well as she could be and required permanent nursing care, so we found her a home close to her family home. Unfortunately after a week she started to deteriorate again and 10 days after leaving the Hospice she passed away. That was on 22 August 2015. I know though that she was given care and love from everyone at Ashgate and I can’t speak highly enough of everyone there and will sing their praises to anyone and everyone for making my mam so happy during the last few weeks of her life. I will be eternally grateful to them and in recognition of the brilliant service that they provide I have taken part in the Sparkle Walk for the past 2 years (already signed up for next year) to help raise funds for the fantastic charity. My husband and other family members have also taken part and have also signed up for next year. I can only say that until you need the help and care from a special organisation as Ashgate Hospice, you don’t understand what they do. The whole experience of their care and support is so comforting to everyone that enters through the door. Each and every member of staff is truly an Angel in disguise. Thank you Ashgate from the bottom of my heart.