Personal Stories

Our Patients and those who use our services can often provide a unique and personal view about what Hospice care and support really means. They have a first- hand insight and practical knowledge about our care and support.

We are grateful to the people below who have agreed to share their personal experience of St. Luke’s Hospice on this page. If you have personal experience of any St. Luke’s Hospice service and would like to share it with others on this page please contact us on 01268 524973 asking for our PR department or e-mail Pr@stlukeshospice.co.uk

VICKY – Day Hospice Patient

Vicky  has Pancreatic Cancer and has been coming to St. Luke’s Day Hospice for 16 months, during which time she has enjoyed taking part in craft work at Diversional Therapy sessions: Vicky is a single mum to daughter Jess who has a rare condition called Toriello Carey Syndrome.

Vicky explains ‘’Since being at the Hospice through their Diversional Therapy programme I have found enjoyment in various craft work – which I find absorbing, rewarding and therapeutic as it concentrates my mind on something other than being ill.  My mind is always working on ‘things I can do or would like to do and make’.  I had started a knitting project – knitting purple hearts in support of Pancreatic Cancer awareness, but also had in mind to  make ‘something’ for Jess.

When chatting in the Day Hospice about things we wanted to do learning to Crochet was put forward as an idea.  One of the thoughts I had was to make a blanket for Jess so that she could ‘wrap it around her’ when I had gone and it would seem as though she was receiving a big hug from me.

I was really pleased to be learning how to crochet under the guidance of Hospice volunteer Maureen  –  but found it very frustrating to begin with.  I had never crochet before and initially it took me about three and a half hours to crochet just one square. Maureen was very patient with me but also very firm and insisted that each square was perfect: The blanket I had designed needed 96 squares – with each square taking me 3 and a half hours it seemed an awesome task!  However I continued to persevere and before long I was able to crochet a ‘perfect square’ in just half an hour and eventually found crocheting to be more enjoyable than knitting.  I find the repetitive process very relaxing, it’s a great stress reliever and wonderful therapy taking my mind off everything else going on in my life – It helps with ‘mindfulness’ and makes me think more about the present, I also get great satisfaction in producing beautiful crafted items I can gift to friends and people I care about.

Each of the 96 squares are different and many have a meaningful family memory – there is a ‘Christmas Square’, and a ‘red white and blue’ one which represents Sunderland FC, our family football team.  I involved Jess in the process of making her blanket. Due to the Toriello Carey Syndrome she has learning difficulties and does not always fully understand what is going on.  So I am having to find ways of explaining my illness to her and involve her in whatever I can so that she will have good positive memories of our time together.  Jess chose some of the themes and colours and I have explained to her that when I am not able to be with her any more she can wrap the blanket around her and think of it as me giving her a big hug.  Jess calls me ‘Buttercup’ and has ‘named’ her blanket ‘my Buttercup hug blanket’.

I am so pleased that I have had the opportunity to learn to crochet and make this special blanket for Jess – I am now using my new skills to crochet other items for family and friends.

 

KIM – Day Hospice Patient

Kim  has bowel cancer and has been coming to St. Luke’s Day Hospice since August 2015 – having been referred to the Hospice for Physio Therapy from St. Marks Hospital in London.  Kim has 2 children Ava age 5 and Dylan age 9.

Kim explains ‘’Whilst at Day Hospice I was speaking to the Diversional Therapist and mentioned that I would like to take-up knitting – I had bought a ‘knitting kit’ to make 2 monkeys which I intended giving to my brother but found the instructions too complicated for me to follow: Maureen one of the Day Hospice Volunteers took me under her wing and with her guidance and help I was proud that I had managed to finish them and my brother was delighted when I gave them to him on his birthday!

Buoyed by this success I was thinking about taking up another project when I noticed that my daughter, Ava, was playing with her older brother’s ‘baby blanket’ which is a treasured possession as my late mother in law had made it for Dylan when he was born; Sadly my mother in law had passed away before Eva was born so she didn’t have her own ‘special blanket’: This gave me the idea that I could possibly make one for her and the inspiration to learn how to crochet.

Maureen again took me under her wing and guided me through learning how to crochet.  As with knitting Maureen was very patient – and within 3 months from my first ‘small crocheted square’ I had made a wonderful blanket which Ava loves.  I have incorporated some meaningful family memories which include the flags from her grandparent’s country of origin and also added Ava’s favourite butterflies and flowers. However, I drew the line when Ava requested that she wanted 88 butterflies and 99 flowers on it!

More-over, though creating this blanket has been more than making my daughter happy – it gave me a sense of purpose, and that despite being very ill I can still learn new things and make my life meaningful. During the past 3 months I have not been in the best of health at times being very poorly – I can honestly say that crocheting Ava’s blanket has kept me sane, and absorbed my mind stopping me thinking of how ill I was and worrying about treatment to come: It gave me purpose and I truly believe ‘pulled me through’ what could have been ‘dark days’.

Ava, the same as her brother, now has her own ‘special blanket’ made by ‘mummy’ which can become a family treasure. I am now knitting for other members of my family and teaching Ava too.

 

 

CHRIS – Day Hospice Patient

Chris has been using services at St. Luke’s Hospice for 4 years, attending Day Hospice. Chris is married and is the father and stepfather of 4.

‘’I felt scared when I first knew that I had an appointment at St. Luke’s Hospice, the word Hospice, you know that is frightening, especially to know that you have been referred there. The children were asking ‘is it happening now Dad’?  I tried to reassure them that I was only coming for a look.

I felt so differently about the Hospice after my visit, everyone was really welcoming, the Nurses, the Doctors, the Volunteers. To be honest it was a relief and for the first time since my diagnosis that I could talk to someone.

I describe the Hospice as a ‘Spiders Web’ to people. The Hospice is a hub with so many areas doing different things. I was able to come and have my blood tests done here so as not to have to go to the Doctors or Hospital. I’ve had physiotherapy, lymphoedema treatment, acupuncture, support from their Hospice at Home service and counselling. To be honest it is all amazing but the counselling has made a huge difference to my life. Being male I tried to keep how I was feeling to myself and it was getting on top of me. Being able to talk to a counsellor here and also to other people going through similar experience has made a tremendous difference not just to me but to my family. We all talk about it now and are much more open.

I now live my life and enjoy life putting the diagnosis to the back of my mind, but it is the support of St. Luke’s Hospice that keeps me positive and coming to the Day Hospice gives me something to look forward to. If I hadn’t come here that first day, I wouldn’t have had the support of the Hospice at Home team when we needed it, physiotherapy to keep me mobile, lymphoedema treatment for my swollen and painful arm or acupuncture to help me sleep.

I would encourage anyone who needs Hospice services to come to St. Luke’s Hospice. Coming here has changed my view of Hospices, it’s not about dying, it’s about living every day and keeping positive. St. Luke’s Hospice has given me back my quality of life and mentally got me through so that I can put it to the back of my mind and carry on. In my family we call it ‘Daddy Day Care’ but it is much more than that.

 

 

 

KEN – Day Hospice Patient

‘’This is my third week here. My perception about the function and duties of a Hospice has been torn to shreds – I thought it was more about the ‘’Grim Reaper’’ than ‘Patient Welfare’ …. I was very wrong! The staff are friendly, always willing to support patients in every way, and the food is extremely good – I have never been on holiday before but if I had I imagine it would be just like this’’.

Linda – Mother of Hospice patient.

‘I was heartbroken when my son, Tony, passed away at St. Luke’s in April 2015. My grief on that day was magnified because on the very same day in 2007 Alan, my then husband and Tony’s father, had also passed away in St. Luke’s care in the same In-patient Unit.

Having lived independently Tony had moved in with me as he was unable to cope alone. As his illness progressed and more help was need to care for him St. Luke’s Hospice at Home, OneResponse, Complementary Therapy and Day Hospice services all stepped in to help. Tony resisted the initial invitation to attend St Luke’s Day Hospice but once there, he really enjoyed the time he spent with them and the friends he made on his weekly Hospice visits.

Eventually Tony was admitted into St Luke’s In-patient Unit in March 2015 – It is fair to say that although being admitted into St. Luke’s Tony remained very reluctant for his children, Evie Mae and Tom Alan, to visit. He felt it was not the right environment for them and not something they should be experiencing at such a young age, being then age 7 and 5. Naturally at this point Tony was very ‘down’ with the whole situation, he was missing his children and they were missing him. Shortly after being admitted with encouragement and support from St Luke’s and the rest of his family I arranged for Evie Mae and Tom Allan to visit. It was such a wonderful surprise for Tony because we hadn’t told him they were coming – staff at the Hospice were so understanding of all our fears and made the visit very easy – so much so that the children visited quite regularly. Evie Mae and Tom Alan, together with Tony and I spent time sitting at the large table in the Hospice lounge, playing and with gentle direction from staff joining in therapeutic craft activities together. Nurses got out a whole array of craft materials, paints, glue drinks and biscuits allowing us to have quality time and make special memories. As Tony became less well the nurses would bring him to the table in his bed, or push him in his bed onto the patio so he could watch them playing and laughing in the garden; The children would climb onto Tony’s bed next to him so they could share books and read together. We even organised an Easter egg hunt, which Tony as well as the children really enjoyed !

St. Luke’s provided us with an ideal family environment, where as well as caring for Tony, they cared for us all. Evie Mae and Tom Alan were given special donated hand- made quilts and ‘daddy bears’ to comfort them and encouraged to put together ‘memory boxes’ all of which still remind them of the special time spent at the hospice with their ‘daddy’. As the weeks progressed it was gently explained to them that their daddy wasn’t going to get better, we were all expertly guided with the use of books, craft activities and conversations to help them understand that ‘daddy’ would not be coming home. Looking back it was all made to be so natural, and his children were able to be with him right up until the day before he died. In the time since Tony has not been with us both children have adjusted well to their situation and often talk about their daddy and the time spent at the Hospice, which I am sure has helped them to cope. As a family we have been given a lot of support and guidance in how to answer their questions with confidence, which in turn has helped us all. We cherish those precious last family days we spent together made all the more enjoyable because of St. Luke’s special care and the dedication of their staff. I am so grateful to St Lukes and thank everyone for their support’’.

June – Hospice at Home & OneResponse patient

‘’In January 2016 I was diagnosed with Cancer of the Kidney and in May, following tests and various treatments was informed by the Hospital that my situation was not going to improve.

So, – This is my life now – I am bed bound. I keep in touch with the world through my TV, my telephone, church, friends and family visits together with St. Luke’s Hospice at Home all of which I am very grateful for.

When first being told I needed to consider my future care and that ‘going into a home’ is something I needed to consider I felt very strongly that I wanted to remain in my own home – a place I love.

My husband, Bill, died 9 years ago in St Luke’s Hospice and as a family at the time we spent several weeks there – even through the night. My family have since remained in contact with the Hospice by taking part in fundraising events and other ways. Having experienced the way Bill was cared for I felt very comforted, reassured, and happy when I was told that the Hospice would be supporting me, and my family, in having my wish to be at home.

The Hospice visits me four times a day – responding to whatever my needs are. I feel that they are not ‘just doing a job’ when they visit but that they are genuinely interested in me as a person, supporting me with love – what I mean is that they make me feel cherished and not a burden, they don’t make me feel embarrassed at all about needing support with personal care – even though I need help with virtually most aspects of my life I do not feel I have lost my dignity in any way. I feel very calm and accepting about my future, which I suppose may seem strange to some given my situation, but that’s how I feel. I am in a very ‘contented place’ and I know – that just as with Bill – I am in ‘safe hands’. All the nurses and staff who visit are brilliant – they see me through the day and I look forward to their visits. They make me laugh, making sure all is well, checking and adjusting my medications and caring in small ways which mean a lot.

I am so grateful to St. Luke’s and cannot thank them enough for all they have done and are continuing to do for me and my family.

Chris (Day Hospice patient)

‘’Initially it was whilst working for Morrison’s Supermarket that I started to suffer with backache and a persistent cough. My back pain was so bad on one occasion that, although at the time I was not working in my local Grays branch, I was forced to visit the local hospital Accident & Emergency department for pain relief where tests, including x-rays were carried out. The x-rays showed I had ‘marks’ on my lungs which needed investigating. I was released from Hospital with instructions to visit my GP immediately I got home. That was in April 2012.

My GP referred me to Basildon Hospital where a series of tests, which included CT scan, followed. I was sent home to wait for an appointment for a biopsy –at this stage it never entered my mind that I could have had cancer. Further tests including the biopsy confirmed that I had primary lung cancer with secondary cancer on my liver. Throughout this period of time my mind was working overtime, I had been relatively well all my life and had never undergone medical tests like it. I thought that my bad back could have been age or work related and although having been a smoker all my life I felt numb and shocked when given the test results confirming my cancer diagnosis.

A 3 month period of Chemo Therapy and Radio Therapy followed during which time I was virtually in bed 24/7 as I found the treatment very difficult: I had a terrible, vile, metal taste in my mouth and was completely exhausted. I often thought I couldn’t go on with this but thoughts of my family, especially my daughter and grand-daughter who were looking after me, with support from district nurses gave me strength to go on and fight – so I didn’t give up on the treatment, which was completed in November 2012.
At this point I worked hard to become fit enough to return to work for just 8 hours a week at first. For 3 years I struggled to keep on top of my job – my employers and people I worked with were brilliant supporting me and helping me by adjusting my work patters and responsibilities. They were always looking out for me, but I kept getting infections which kept pulling me back and each time took longer to recover from till eventually in June 2015 I had to give up working altogether.

This was a massive change for me, I have always been ‘a worker’ getting on with life no matter what sort of kept me going – for the first month it felt like I was on holiday but after that I really started to miss work and then started to become angry because I felt that ‘cancer’ had taken my life away from me. The hardest part I found was to accept that I had no control over how my life had changed.

I spent a lot of time watching TV (some days it was all I had strength or motivation to do) and saw a programme about Hospice care – I was very surprised at what I saw and discussed it with my consultant and Macmillan nurse. Following that discussion a nurse from St. Luke’s visited me and we chatted about me visiting and spending time in their Day Hospice. Having lived in Thurrock all my life I had heard about St Luke’s but not in the way it was being explained to me now: So regardless of my personal thoughts about the Hospice I decided to go along and find out what it was all about.
The biggest ‘surprise’ I had initially was the emotional support … I found it so refreshing to be able to speak to people about my illness in an honest, open and a ‘different’ way to the way I spoke to family and friends: When talking to people at the Hospice, be it staff or other Hospice patients, I don’t feel I have to ‘be careful’ about what I say, or explain myself or life choices I have made. I thought I was dealing with my illness but I soon came to realise that emotionally I wasn’t – my illness was making me become very detached from my family who are so supportive and helpful to me and in return I was trying to be very protective of them. This had led to me not talking to them honestly about my illness and because of this we were not as a family all accepting my true situation which sometimes resulted in family tension.

Support I receive from St. Luke’s has made me a stronger person, through counselling and other support I receive I have become stronger and better able to deal with my life. The Hospice has time for me and gives me the opportunity I need for my emotions to ‘unfold’ – they have time to listen to me and all my problems – they don’t make me feel like I am a burden – I feel like I am going to a ‘club’ of some sort when I visit and everyone there is glad to see you. As well as my visits to the Day Hospice I now have the confidence and knowledge that should I ever need help when I am at home I just need to phone St. Luke’s OneResponse or Day Hospice for advice and if necessary their staff will make an extra visit. I am now a much happier person in myself concentrating on what I can do not what I can’t do!

Since being a Hospice patient I am proud to say that I have taken part in 2 ‘Colourthon Walks’ with my friends raising money which in turn supports Hospice Services. I am also organising a ‘Charity Night’ to support St. Luke’s because being a Hospice patient has opened my eyes to what the Hospice does for people and how much their care is needed for people like me.
I can’t do what I used to do but my Illness and having cancer has made me appreciate all the good people who have come into my life since being ill and are part of my life now helping me live as well as I can’’.

Florence (Day Hospice Patient)
St. Luke’s is special to me because..
They have made me feel much better and on my Friday visits I have made new friends
(Marilyn Day Hospice patient)
St. Luke’s is special to me because ..It is like a ‘Good Friend’ – with me, and helping me, every step of the way for the past 3 years.
(Geoffrey – husband of Hospice patient)
’St. Luke’s is special to me because…
Of the fantastic care my wife and I receive, full support is given to us both .
(Carol – IPU patient)
St. Luke’s is special to me because…
They are lovely, special people – nothing is ever too much trouble
(Sidney – Day Hospice patient)
’St. Luke’s is special to me because…
It gives me the treatment and friendship I need – they keep me in touch with the world.
(Patricia – IPU patient)
’St. Luke’s is special to me because …
Before being here I had the same dreads as I’m sure most people have, but on arrival I was knocked-out at the wonderment of the Hospice. It is beautiful, the staff are angels, I cannot praise it highly enough. It’s a very happy place.
(Michael – Day Hospice Patient)
’St. Luke’s is special to me because…
St. Luke’s Hospice enables me to receive all my treatment at one place in a happy, relaxing environment
(Linda – Patient’s wife)
’St. Luke’s is special to me because …
it gives me peace of mind knowing that my husband is being cared for in the best place possible.
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