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Your Care & Support

Max Neill, who is living with bowel cancer, shares his experiences of spending Christmas at St Catherine’s Hospice and the difference the care he has received has made.

Max NeilI didn’t expect to be waking up on Christmas morning in a hospice.

But my life’s like that now. The results of one scan can throw all my plans up in the air.  And the results of my last scan weren’t the best I could have hoped for.

I’m far from dying yet though. I got offered the place here at St Catherine’s so that I could get on top of my pain.

I’ve been taking the wrong attitude to my pain. I’ve stoically tried to tough it through during the day, leaving me knackered at night. This approach has meant that I simply haven’t left myself open to the joys that life can offer. Most nights I’ve ended up frantic as the pain bites in: no good for me, and no good for my wife who gets disturbed every time.

So over some time here, with the help of the nurses and medics my meds are being adjusted, and I’m finding out that stuff I didn’t think worked does work, as well as how to space it, how to be less anxious about it.

And being here has also given me a chance to talk to friends and family about the reality of my illness. I think maybe I tend try to protect people from my bad news. This hasn’t done them any favours, and I’ve been told off about it! The word ‘hospice’ on the front door means there can’t be any pretence. I have a pretty aggressive cancer. It’s not behaving like a normal bowel cancer. Even with the very best chemotherapy my chances are maybe one in twenty.

Of course his doesn’t mean I’ve no chance. I know people who’ve survived worse odds. I’m hoping to get onto a clinical trial, and will work with Christie if any become available. The lads play Dungeons and Dragons. They know how hard it is to roll a 20 with a 20 sided dice!

Christmas was lovely here.

It is a privilege to wake up among the dying. It is a privilege to be cared for by dedicated people, including volunteers who have come in over Christmas and the ‘dog end’ days of the year to support the people here. When the news is so packed tight with inhumanity, it is a true privilege to see countless small acts of humanity happening, in the very darkest times of the early morning, in the warmth of the cleaner’s voice as she moves from room to room, in the humour and stories of the nurses and helpers.

As I’m writing, a lovely lady has come in. She takes all the flowers donated to St Catherines’ and turns them into beautiful smaller arrangements that she leaves in every room. Every few days she comes back to refresh or replace them, she has been doing it for years and nothing seems to stop her. Humanity expressed through her artistry and persistence.

Years ago I read a great book by Boykin and Schoenhofner that seems to be a well kept secret. It’s called ‘Nursing as Caring’ and it’s always stuck in my mind far more than the technocratic rather mechanical ways of theorising nursing care.

I think the future study of great care, the understanding of what really makes good person centred support for people will actually be an inquiry into our own humanity and how to use it effectively for people. I’m witnessing that when a caring organisation enables everyone in it to find ways to express their humanity, to listen to people and deliver what is important to them, it becomes a true House of Care, a genuinely nurturing environment very different from some of the toxic institutions we seem to create so easily. It’s too easy to sacrifice our own humanity in the name of ‘professionalism’ or for countless other persuasive reasons.

The Christmas tree in the chapel here is incredibly beautiful. Children have cut out paper angels, and written messages to hang on the tree for their parents who died here: “I hope heaven is special mummy”.

I managed to spend time out at home over Christmas too, and had great family meals on Christmas Eve and Christmas day, great fun playing Articulate! I think the plan is for me to spend a few more days here, then to get home. I’m going to use that time to do some writing. Isabel Allende said “Write what should not be forgotten”. I’m hoping to write some very personal and private stuff for my family and build it into some kind of personal cancer journal that includes some of the person centred thinking tools like my life story, my hopes and fears and a few things I’d like to do. I don’t have many big ‘bucket list’ ambitions. A trip to Disneyland would be my idea of a nightmare!

I do intend to go to watch the great poet John Cooper Clarke when he appears in Preston, I saw him a few times 30 years ago. He would be the highlight of CND demos in Manchester bringing his cutting cynical humour dispensed in economical rhyme as a great counterpoint to the interminable speeches of the assorted politicians! He’s no stranger to death among his friends himself at the moment: “I could go to five funerals a week. But that many vol au vents isn’t good for you”.

Time with family. Time with the people special to me. That’s what I’m focusing on right now.

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Your Care & Support

In the third of three powerful blog posts, ex-pat and hospice supporter Sylvia Ghorbani – who is originally from New Longton but has lived in Virginia, USA, since the seventies- shares her experiences of St Catherine’s Hospice when her Auntie Irene Eccles was cared for here during the summer of 2015.

Time has passed and Auntie Irene is now visibly closer to the end of her life. I spend hours sitting by her bedside, not knowing if she is aware that I am there. Day-to-day life at the hospice continues.

Here are the final excerpts from my diary.

Sunday, September 6, 2015

I have decided to participate in the walk across Morcambe Bay. It was a last minute decision, but I desperately wanted to do something to give back to the hospice for all their loving care to Auntie. I received many sponsors from Auntie’s neighbors – – I didn’t even have to ask. The Morcambe Bay walk was a true connection with the earth. Walking waist deep in the bay, blue skies overhead and surrounded by caring individuals whose only goal is to help others. This entire event was so soothing to my soul and brought me great peace of mind.

Monday, September 7, 2015

I arrived at the hospice as nurses were giving auntie a bed bath. They move her carefully and talk to her so lovingly. As I watch, it feels like they are caring for a new-born baby with total unconditional love.

Wednesday, September 9, 2015

I sat quietly and peacefully most of the day in Auntie’s room. She was comfortable and without pain. I return home around 7:00 p.m. I was hesitant to leave, but I was so tired and decided to return later. Around 8:30 p.m. the phone rings. Eileen, senior staff nurse, calls to tell me that auntie passed peacefully a few minutes ago. Her voice is so tender and caring. I immediately return to St. Catherine’s. Eileen is waiting for me and takes me to auntie’s room. Eileen and I kneel by the bed together. Eileen is there with me. I tell her how much I loved Auntie Irene and she holds my hand and her eyes convey a deep understanding. (This is a moment I will never forget: kneeling by my aunt’s bed, hand in hand, with a truly caring nurse, who listens (an art in itself). Where does this happen today? )

Tuesday, September 15, 2015

Today is Auntie’s funeral at Charnock Richard Crematorium. The service was emotional, but a true celebration of her life. After the service the reception is held at The Mill, St Catherine’s Park. Nicola, The Mill team leader, who Auntie loved to see, has decorated the reception room with such a personal touch. Each individual table is covered with a crisp white tablecloth, pink carnations, auntie’s favorite flowers, are centre pieces, sandwiches, cream cakes and drinks are all served individually to each table. Photos of Auntie surround the room. As I sit and watch all her friends chatting and celebrating her life over afternoon tea, I am taken back to her first day at St Catherine’s. I remember sitting in the garden outside her room and having biscuits and tea. She felt so safe and cared for. This special place she grew to love now hosts her final goodbye …… a perfect farewell.

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St Catherine’s Hospice relies on the hard work and support of its team of more than 700 dedicated volunteers. They are at the heart of the Hospice and play an essential role in enabling us to provide the services we do.

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For just £1 you could win the jackpot of £2,000! And the best bit? All profits raised through the lottery are spent directly on patient care delivered by St Catherine's at the hospice in Lostock Hall and in communities across Central Lancashire.

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In the second of three powerful blog posts, ex-pat and hospice supporter Sylvia Ghorbani – who is originally from New Longton but has lived in Virginia, USA, since the seventies- shares her experiences of St Catherine’s Hospice when her Auntie Irene Eccles was cared for here during the summer of 2015.

 

I have now been away from home  for over 3 months. It is difficult to be away from your husband, children and grandchildren – your entire support system. I have missed birthdays, family celebrations and Christmas. Yet, despite being away for so long, I have found great solace in my daily trips to St Catherine’s Hospice. I will now continue with excerpts from my personal diary, as I navigate the in-patient programme at St. Catherine’s.

Monday, August 3, 2015

Ann-Marie, Day-Therapy staff nurse, phoned this morning to say Auntie Irene would be admitted this afternoon to the in-patient unit. Thankfully, she would attend her Monday, Day-Therapy session first. In my own mind, it was important for this transition to be carefully navigated and seamlessly executed. So, I felt a surge of relief knowing she would see all her friends in Day-Therapy and then be admitted.

Bill, our Monday driver, picked both of us up from home. Auntie had packed her little suitcase and was happy to see Bill. She told him “As hard as this is, St. Catherine’s feels like family to me.”

Irene 1After lunch Ann-Marie escorted both of us downstairs to the in-patient unit. Auntie Irene had a lovely room with double-doors opening to a sensory garden. We unpacked and sat in the garden. It was lovely to feel the sun on our faces, as we enjoyed tea and biscuits. Auntie said, “I feel like I am on holiday, sunshine, flowers and a spot of tea.”

Later in the day, a resident specialist nurse (Simon) and staff nurse, (Laura), came by to review Auntie’s history and concerns. They listened intently to Auntie’s life story, in-depth questions, fears, cares, and concerns. The entire procedure was unrushed, genuinely caring and so dignified. As I sat there, a quote came to mind from the book I was currently reading: “Without adequate medical care, dying can be horrible. With skillful medical care and attention to the personal experience of the patient and the person’s family, dying can be made bearable. When the human dimension of dying is nurtured, for many the transition from life can become as profound, intimate, and precious as the miracle of birth.” (Dying well, Ira Byock, M.D.)

Saturday, August 8, 2015

Auntie was very excited today, as she was given a walker. She walked so fast, that the nurses and doctors called her “Speedy.” She laughed and loved being the centre of attention. Auntie said: “Let’s walk to The Mill and have a coffee. Nicola, will be there, she brings my daily menu.” Upon arrival at The Mill, Nicola stopped at our table to say hello and Auntie said, “Everyone knows me here, I feel so special.” It was heart-lifting to see her so happy.

Personal diary entry

I am personally finding this time very hard. The emotion of watching someone slowly deteriorate is not easy. I realise I have so much to be thankful for. Auntie is well-looked after, happy and still relatively independent. I, myself, have had a few emotional breakdowns, but both Bernadette and Dr. Fletcher have always been available to talk with during these difficult times. As a family member, it is amazing how the hospice becomes such a place of comfort. Not only are therapists available to talk to you, but also nurses and doctors. Everyone understands the ups and downs of the emotional roller-coaster you are on. I find the hospice has become my island in a storm.

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St Catherine’s Hospice relies on the hard work and support of its team of more than 700 dedicated volunteers. They are at the heart of the Hospice and play an essential role in enabling us to provide the services we do.

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For just £1 you could win the jackpot of £2,000! And the best bit? All profits raised through the lottery are spent directly on patient care delivered by St Catherine's at the hospice in Lostock Hall and in communities across Central Lancashire.

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Your Care & Support

In the first of three powerful blog posts, ex-pat and hospice supporter Sylvia Ghorbani – who is originally from New Longton but has lived in Virginia, USA, since the seventies- shares her experiences of St Catherine’s Hospice when her Auntie Irene Eccles was cared for here during the summer of 2015.

There can be times when an unexpected experience changes a person’s entire perception of life. It happened to me!

I was born and raised in New Longton, and relocated to Virginia, USA, in the early 70’s. Yet, England will always be a part of my soul. Over the last few years I spent several months in England, taking care of my aunt, who was diagnosed in December 2014, with pancreatic cancer.

Upon diagnosis, she was immediately admitted to Chorley Hospital, doctors there placed a stent in her bile duct blocked by the tumor. The procedure, though difficult for her, went extremely well and after a month of convalescing she was able to return to a relatively normal life.

After the holiday season, Auntie was invited to attend Day Therapy at St Catherine’s Hospice. This is where my story begins. Through excerpts from my personal diary, I would like to invite you to return with me, and experience the emotional but rewarding path of taking care of someone in the final stages of their life in a place filled with angels – St Catherine’s Hospice.

Monday, January 12, 2015

Get up around 8:00 a.m. With fingers crossed hoping to attend our first Day Therapy session at St Catherine’s Hospice. I have heard this is a programme for out-patients, giving them an opportunity to meet others and spend a day interacting through various activities.

DSC_0034Auntie Irene is very hesitant to go. I know change is difficult for her. She always worries about walking into a room where she doesn’t know anyone. She is really dragging her feet this morning. (Thank goodness the staff at Day Therapy understood this fear and invited me to attend Auntie’s first two visits with her, until she feels more comfortable in her surroundings.) Our driver, Bill, arrives promptly at 9:40 a.m. He is extremely nice and Auntie chats away with him. He lives in Gill Lane, where Auntie grew up – so they have something in common – hallelujah!

Upon arrival at the Hospice, as she is warmly greeted by front-desk personnel, I sense Auntie’s nerves are calming down. “Good morning, Irene. How are you today?” Bill escorts both of us to the second floor where we walk into a sun-filled room filled with happy chatter. Both Auntie and I are immediately greeted by Anne-Marie, day therapy sister, who asks us if we would like a cup of tea and a biscuit.

As the day evolves, I feel so happy and relieved to see Auntie enjoying this wonderful experience. Leslie does her hair, Barbara massages her feet. In a cosy dining room, she has a home-made lunch of mashed potatoes, pork chops, veggies, sponge cake and custard. I am amazed at how much she is eating, as her appetite has been so small lately!

Following lunch we return to the sun-filled room for a short, intimate church service. In the car, on the way home, Auntie chats away to Bill about her first day in Day-Therapy. It is the first-time I have seen her so animated in a long time.

At long last, I feel a comforting peace, from knowing there is a caring programme like this to support Auntie and myself through her final months. On one occasion the local Mayors visited and Auntie Irene really enjoyed meeting and chatting with them, as you can see in the photograph above.

Day-Therapy continued for 12 more weeks and Auntie Irene attended up until two weeks before she passed. It brought so much love, caring and friendship into her final months – it actually extended her life!

Our Next Event

Upcoming Events

Become a Volunteer

St Catherine’s Hospice relies on the hard work and support of its team of more than 700 dedicated volunteers. They are at the heart of the Hospice and play an essential role in enabling us to provide the services we do.

Register your interest

Join Our Lottery

For just £1 you could win the jackpot of £2,000! And the best bit? All profits raised through the lottery are spent directly on patient care delivered by St Catherine's at the hospice in Lostock Hall and in communities across Central Lancashire.

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Take a look around

Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Ut enim ad minim veniam, quis nostrud exercitation ullamco laboris nisi ut aliquip ex ea commodo consequat. Duis aute irure dolor in reprehenderit in voluptate velit esse cillum dolore eu fugiat nulla pariatur. Excepteur sint occaecat cupidatat non proident, sunt in culpa qui officia deserunt mollit anim id est laborum.