We were very honoured when one of our patients, Terry, agreed to share his story with us, as part of the national Dying Matters awareness week in May 2017.

Please take the time to listen to each part of Terry’s very powerful and moving words about his experiences.

As part of Dying Matters Week 2017, patient Terry, from St Austell, talks about his determination to set goals.  A recent one was to leave Mount Edgcumbe Hospice for a day to watch Plymouth Argyle secure promotion to League One.  In part 1 of his story, Terry talks of a very special day out.

In part 2 of Terry’s story he talks about finding himself in a hospice where the care he says, surpassed his expectation. Terry says visiting a friend who was dying and being cared for at Mount Edgcumbe Hospice, helped him when he then had to go in himself.

As part of Dying Matters Week one of our patients, Terry is sharing his story. He says what matters to him now is being positive and feeling he is in control of his life.

In part 4 of his interview to mark Dying Matters Week, Terry talks about what’s important to him now, including his family and his faith.

The Boscastle Buoys formed in around 2009 after a group of locals, mainly from Boscastle discovered that as well as sharing a drink in the local pub, the Napoleon Inn in Boscastle, they also enjoyed singing.  They were originally called the Boscastle Boys until one of their members came up with the idea of changing it to Boscastle Buoys to represent a buoy in the sea, with Boscastle being a fishing village.

One of the Buoys was treated and supported by Cornwall Hospice Care’s Mount Edgcumbe Hospice and has since died.  As he received such great care the Boscastle Buoys pledged to raise money for Cornwall Hospice Care and collect donations wherever they sing.

“We want to shake the bucket for Cornwall Hospice Care”

With their compelling repertoire of sea shanties and traditional Cornish songs, the team raise money for Cornwall Hospice Care. David Pimm, one of the singers, explains; ‘We sing at events all round North Cornwall and when we do we shake a bucket in support of Cornwall Hospice Care.  As well as singing in their local pub, the Boscastle Buoys are also asked to sing throughout Cornwall.  Rog explained; “We are often asked to perform at a certain venue and we say, well, can we bring the bucket along? We want to shake the bucket for Cornwall Hospice Care.”

Pete added; “We know that the Hospice is very compassionate, the staff that work there are exceptionally good carers and nurses and we just know that every penny, every pound that gets put in the bucket is put to a very good cause and used most efficiently. It’s channelled in the right direction and used at the sharp end for what is no doubt a wonderful quality of care.”

Rog goes on to say; “You don’t have to go very far before you find somebody who’s had to go there or they know somebody that’s been treated at Mount Edgcumbe, it means a lot to people around here.”

Since starting to sing for Cornwall Hospice Care, the Boscastle Buoys have raised over £10,000 for the charity, which they are very proud of.  Pete said; “We would like to say a big ‘Thank you’ to everybody who has supported us since we’ve been raising money for the Hospice.

“every penny, every pound that gets put in the bucket…it’s channelled in the right direction and used at the sharp end

for what is no doubt a wonderful quality of care”

Rose Beattie, Cornwall Hospice Care’s Fundraising Manager, accepted the latest donation from the group at the show; “The Boscastle Buoys are great. They bring in a steady stream of donations for our charity and in support of our two adult hospices at Mount Edgcumbe in St Austell and St Julia’s in Hayle. They have a massive amount of fun enjoying their singing, while also remembering their friend and we truly appreciate their remembering us and the work the teams at Cornwall Hospice Care do. All the money they raise comes from Cornwall and is then spent by us for and in Cornwall.  It’s a good Cornish partnership.”

If you have been touched by the Boscastle Buoys story and would like to help Cornwall Hospice Care, you can make a donation, hold a fundraising event, donate your unwanted items to our shops, join our weekly lottery or help by volunteering for the charity.

“Award winning student brings artistic twist to the next film in our  #HospiceStories project.”

Jessica’s story, marks a dramatic change in the development of #HospiceStories with the collaboration of a member of the team at Cornwall Hospice Care and a media degree student.  Jessica and Jade Berry worked on a concept to illustrate the creative relationship that Jessica and her Grandmother Christine shared.

Jessica began working at Cornwall Hospice Care in September 2014 as the Digital Media and Design Officer for the charity following the completion of her degree. However, the awareness of the job came about as a result of Christine receiving treatment at Mount Edgcumbe Hospice.

The overall concept of the film was intended to emphasise the artistic bond that Jessica and Christine shared, also reflecting on the strong feminine theme for which Jade’s work is recognisable.  Jade is in the final year of her Applied Media degree at Truro & Penwith College and is an award winning photographer and film maker, having been the recipient of The Mercedes Curnow Award.

A disjointed start early in life, meant the coming together of two people in 1988 on an RAF base in North Cornwall. A mother of two, and a RAF Scotsman, a bumpy, but loving relationship followed for a further 22 years. With a short temper and institutionalised personality, Andy was always a difficult one to relate to… I remember as a child walking on eggshells around him but the connection between them was evident. A proud man experienced a slow deterioration from the presence of harrowing ‘C’ word illness… Christine continued to care for him and I remember her saying that his illness pacified him. In August 2010, I spent several days looking after her house while she fled to his bedside, and on the 8^th, he lost his battle to his Cancer in Mount Edgcumbe Hospice.

For the few days Christine spent with Andy, the staff at Mount Edgcumbe enabled her to continue to be his partner and no longer his carer. She was always grateful for the support they had both received and continued to thank the charity by supporting their fundraising efforts.  I remember her asking my mum and I to join her in a ‘Sleep Walk’ through Truro, she bought the gaudiest PJ bottoms for us all to wear, she loved it.

At this point, naturally a story could come to an end, but the connection with the hospice continued, and there is still much more to tell.

Two years later an uncomfortable night, followed by a doctor’s appointment and immediate referral to see the Gynaecologist at Treliske, resulted in the discovery of an abnormality in her cervix. Subsequently a scan answered our questions, and that harrowing ‘C’ word illness had reoccurred but this time in Christine.

A course of intensive Radiotherapy and Chemotherapy commenced, 28 of the first and 6 of the latter. Professor Radstone asked whether she would like to be aware of her chances, she said ‘No, I do not want to be defeated before I start’.

A quiet spell become apparent in a strong relationship which had blossomed over a maturing 20 years. Perhaps the fear effected the way she had always been, but I continued to love for her as I always had done. The reality that my family and I were being faced with our worst nightmare hit home. My earliest memory of a change in my best friend was at my photographic exhibition in May 2013. She was always so determined, ‘I will be there’ ‘I will always be so proud’, and she clasped hold of my arm tightly and warmed me with her admiring gaze. She always laughed about the height of my heels, and how I made her feel tiny, that evening was no different in that respect.

Looking back on that memory, no one would ever know that she had just had a PET scan, she was conscious of who she spoke to that evening as she been injected with a radioactive drug. The scan showed that the intensive treatment that she received had worked and the tumour had reduced in size by 80%.  She would never admit to her optimistic attitude, but in the early stages of her illness she took the bull by the horn and never became submissive to ill health.

At the age of 68 she was a complete fitness fanatic, running a mile and a half most mornings, doing heavy cardio sessions, buying her paper and making the trip back home. Totally meticulous in her routine, and in the time I spent living with her whilst in university, I did find the adjustment to her early morning madness exhausting. But I wouldn’t have had it any other way.

She described her cancer, as something that ‘just needed to be sorted’, she expressed no fear and continued with her healthy body, healthy mind outlook on life. Of course, evidently her body was not healthy, but her effort at treating it as a minor inconvenience worked in her favour.

In the initial stages of her illness, Christine had an idea of documenting the deterioration of cancer through words and photographs. She began writing a diary, and asked me to photograph elements of these diary entries, at first I felt happy to do this, however as she became more ill I found it too upsetting. However, I knew that this was something that she was passionate about, so I thought about how I could incorporate this idea into another manner of photography.

I was soon approaching the final stages of my degree, and within my Media course, my chosen specialism was photography. Rather than photographing Christine, I began on a self-portrait project, documenting my own response to her illness.  This enabled me to capture a rollercoaster of emotions. Towards the end of the project, I felt that there was something significantly missing from this pictorial story, Christine. One evening, in early spring we sat together and sequenced the hundreds of photographs I had taken, eventually this number became fifty and a narrative shortly followed. The words that we composed oozed an overwhelming sense of fortitude. These words, I reflect on frequently, it is amazing the power that words can have on us.

“An awakening of a journey of self-analysis, stripping back normal conceptions of my life

Bath water replaces amniotic fluid; water is life

An aesthetical acceptance of myself – true ideas of my natural ideology 

Veiling emotions through classic conventions shows another facet of my psyche

Certain elements can be illusionary, noting a dreamlike state expressing subconscious evolution

Movements signify a recognition with the camera, denoting further transitions in my life

Eyes closed, protected from the light; eyes, the windows to the soul

The power of the woodland accentuates the vulnerability of the naked form; nature with its idiosyncrasies

The simplicity of the shots denotes power over the natural elements; there was no conflict,

 Innate peace

The contrast of the derelict building emphasizes the delicacy of the compositions

These pensive shots communicate depth of feeling; synonymous of an enigmatic emotion

Candid relaxed images symbolize further diverse elements of self-reflection

The equation of water in life transcends a personal metamorphosis into my prevailing state of mind

The symbolism of freedom in water relates utterly to my freedom of personal expression through the medium of photography

Self-reflection, will allow perception from others upon these multi-dimensional reflections of me.

Following the success of intensive radio and chemotherapy, she continued to have further treatment, this time brachytherapy (internal radiotherapy) the proud lady that she always had been, during this spell of treatment of which she was hospitalised at Derriford, she requested no visitors. Appearance proud she knew that it would be a spell of several days where she couldn’t do her hair nor her immaculate makeup, we respected her wishes. Subsequent to the brachytherapy Christine had another scan to determine the success of this treatment. Remarkably, this treatment proved to be extremely beneficial with the results determining that the tumour in her cervix had gone.

As a family we felt blessed, our worst nightmare seemed to become less prominent and the fear and anticipation diminished. However, an appointment with the consultant whilst receiving brachytherapy subsequently lead to the discovery of another abnormality in her body, she was sent for a needle biopsy for a lump in her neck. The consultant immediately scheduled her for six sessions of chemotherapy to ‘zap’ the lump.

In November 2013, Christine began to develop chest pains and a nasty cough. These symptoms were immediately diagnosed as being a nasty chest infection. At this point, my family and I experienced a huge sense of uneasiness and fear. Christine became very uncomfortable, some days would be better, others worse. She used to text me a lot, these texts, represented the diversity of her wellbeing on a daily basis.

In early December, my Mum experienced a traumatic experience herself, her heart began racing and continued in going very fast for a period of several hours. We called an ambulance, he conducted an electrocardiogram (ECG) and established that the abnormality of her hearts rhythm was Supraventricular tachycardia (SVT). Several attempts of bringing Mums heart back to a normal rhythm at home was unsuccessful, so she had to be taken into Treliske. I remember being sat in the back of the ambulance with her, firstly my Nan being in total despair, to now my Mum. A multiple role reversal.  After a long wait at the emergency department in Treliske and witnessing the passing of a gentleman in the bed next to Mum, she eventually got treated with a medicated injection which blocked the abnormal electrical impulses in her heart.

I had to make the call to Christine, to let her know that her daughter was in hospital, as you can imagine she was in total shock, and again that fear set in again that she was going to have an episode of extreme anxiety herself.

The SVT that my mum experienced, was put down to the high levels of stress that she was experiencing. She seemed so brave every day, totally selfless in her manner of dealing with the illness of her mother. But the stress must have manifested itself, and obviously her body got to breaking point. For several weeks subsequent of this episode, my Mum was very apprehensive of this happening again, at the same time trying to reassure her mother that everything was going to be ‘Ok’. When you experience two people in your life both fragile and needing you, at that point you have to step up. I feel my maturity advanced in November/December 2013, and since then I haven’t looked back.

As Mum got her confidence back, Christine became more and more weak. Over the Christmas period she stayed at home. The cough continued, the pain worsened. Usually a social person, creating healthy conversations, Christine experienced worse symptoms when talking, so alongside everything else this decreased the elements of ‘normality’ that she had left at that point. In early January, she was sent for a chest x-ray, the results of the x-ray determined that the ‘Infection’ was still there, the strength of the antibiotics had been doubled and she was given an inhaler to aid her breathing.

With the ‘infection’ still there in February, on the 12^th of the month, Mums birthday, Christine was sent for an MRI scan. The MRI scan revealed that she hadn’t been fighting the symptoms of a chest infection for the last three months. She had lung cancer, lung cancer that was terminal. She was offered further treatment, the treatment however obviously would never change the inevitable, but could give her more time.

Carboplatin was the form of chemotherapy that she was offered, a harsh form of therapy. Christine only received one session of treatment before it began to worsen her symptoms more so and negatively effecting the remainder of her quality of life.  Christine, became increasingly more ill, however in May she had a spell where she perked up, she made the first trip out of the house in a long time to come and see my final photography degree show in St Ives.

The images in this exhibition were the ones she had sequenced previously, she stood so proud of what we had achieved together. The exhibition which flowed up the stairs totally depicted the creativity of our relationship. In this spell of when she perked up, she also accompanied the rest of our family to have a meal out to celebrate the birthdays of Claire and Lucy, my Auntie and Cousin.

The determination of Christine making it to my exhibition, will always inspire and encourage me. I wanted to do something to remember that special moment. The words that she composed, although relevant to that series of photographs could be related into a multiple manner of points in my life. I asked Christine to write one line of the context in her hand writing, I took this handwriting to a skilful tattooist who placed these words of wisdom onto my foot. A concept of come what may, every stride I take in my life I will always have her with me. She loved the tattoo and wanted to get one herself, unfortunately her illness restricted that.

Sadly from that point on, Christine’s illness began to subsume her, she became weaker by the day and increasingly needed more support and care. As a family we done our best to try and care for her, however we knew she needed specialist care to control the symptoms of her illness.

At the end of June, everything changed dramatically for Christine and our family, we accepted the offer of help from Cornwall Hospice Care. Christine had an initial assessment on 25^th June, before being taking in on 30^th June. She was very hesitant about going in, a fear that most people have of the hospice. For Christine, that fear could be totally comprehended, having experienced the loss of Andy four years previous.

However Christine began to settle when she had been there for a couple days and receiving the care that she required. I remember on a visit to see her, I asked her how she felt being there, she told me that she felt ‘safe’. As ill as she was, to feel safe was something of a miracle, seeing her whilst at the hospice gave me a warm feeling as I knew she was being looked after properly.

The wonderful staff at the hospice went the extra mile constantly, I remember on a sunny afternoon my brother and I took some sunflowers in with us, the nurse on duty took them away and brought them back arranged beautifully in a vase and moved Christine from her bed to a chair so we could sit together and enjoy the warmth of the sunshine. The memory is one that I will never forget, and I thank the hospice for that.

Whilst Christine was at the hospice, it enabled us to have the conversations that we needed, conversations about everything. She talked a lot about after she had gone, and how I should keep strong as I had done and remember everything that she had taught me. I would stay strong and smile at her, but inside I felt terrified.

A poignant ‘happy’ conversation for me that I had with Christine, was about a dress that I had found in her wardrobe whilst sorting through her belongings. A seventies original, red silk, flowing past the ankle, she told me she would like me have it, I tried it and it fitted perfectly.  She spent a total of forty four days and nights at Mount Edgcumbe, before being moved to a care home, her symptoms had been controlled and the specialist care of the hospice was no longer required.

During her stay at Mount Edgcumbe, it prompted my mum and I to look on the Cornwall Hospice Care website, in doing this we discovered a position within the charity, for a Digital Media and Design Officer. I told Christine about the job in one of the last visits I had with her, she encouraged me to apply, however I never got the chance to tell her that I had been invited for an interview and was offered the job. I had my interview the day after Christine’s funeral, and I feel that her determination throughout her illness, gave me the motivation and encouragement that I needed.

Many people ask me how I do it, work for a hospice, considering the situation in which my career has come about, I reply with the same answer every time, ‘I couldn’t imagine a more rewarding job’.

Christine, my Nan, my second Mother, my Best Friend, passed away five months ago. There isn’t a day that goes by that I don’t think about her. I have her to thank for the position that I am in now, and working for Cornwall Hospice Care enables me to do that, by focussing the dedication to my work in helping others like my Nan.