Adam’s Story – Supported by Phyllis Tuckwell

“Gem was an incredibly kind and generous lady,” said Adam. “She was genuinely selfless, and brought much light, warmth and love to so many people. She simply made everything in life seem right.”

“We met several years ago, in our typical favourite environment; a cracking local pub. We were friends at first, and gradually grew together to form what we hoped would be an everlasting life together. We got married on June 4th 2021, one of the happiest days of my life. Gem loved cold, sunny winter days, cooking, and enjoying a pint in a warm pub. I’m a pilot, and we loved flying in my Piper Cub plane, heading off somewhere to explore. Above all, we just loved being together.”

“In September 2018, Gem was diagnosed with ovarian cancer. She was cared for by the team at Frimley Park Hospital, but as the cancer progressed, she was referred to Phyllis Tuckwell.”

One of our doctors, Dr Trish, invited Gemma and Adam to the Hospice, so that she could meet Gemma and assess her needs. It also gave Gemma and Adam the opportunity to see the Hospice building, and in particular the IPU.

“Before Gemma’s referral I’d never had much experience of hospices,” said Adam. “I was acutely aware of the taboo of the word ‘hospice’ and the connotations that it carries. Now that I have experienced one, I am absolutely delighted to genuinely say that those connotations are absolutely untrue. I remember going to my local pub one evening to meet the guys, and telling them that Gem had been referred to Phyllis Tuckwell – there were various gasps and looks of horror! It was just brilliant to be able to dispel the myth that a hospice was just for the end of someone’s life, and tell them that actually it was the beginning of so many gains for Gemma in terms of her overall care and her wellbeing. That referral was the doorway to a lot of solutions and a lot of peace. Phyllis Tuckwell was able to give us the time, compassion and care that we needed, and to give Gem the very best life that she could have. We were very lucky.”

“It’s a beautiful approach to the Hospice. The grounds are lovely, and as you walk in you’re greeted by the friendly receptionists. It’s a positive place, a positive time. We met Dr Trish and she was just fantastic. She focussed on pain relief, which was something which we’d struggled to get on top of and which Gemma really needed. It had been an ongoing issue for many weeks, if not months, and had become really debilitating. Phyllis Tuckwell got a handle on that straight away, and really managed to address it such that, ultimately, Gemma’s quality of life was preserved for as long as it could be, and that was invaluable.”

“Gemma’s referral was a huge comfort in every sense. Once we had met with Dr Trish, the ball started rolling and we were under the ‘Phyllis Tuckwell umbrella’ as I called it. We received care across the board, and for me that is still ongoing, as I was offered, and am still receiving, bereavement counselling from Phyllis Tuckwell after Gemma died.”

Initially, Gemma was cared for by our Living Well team, who visit patients at home, providing all the medical, nursing, therapeutic, practical and pastoral care that they need.

“We were visited by one of Phyllis Tuckwell’s occupational therapists, who offered practical guidance with regards to any mobility aids that Gemma might need. We were also given assistance in applying for a blue badge, which was hugely helpful for the many hospital visits we had to make. We were given details of the benefits we were entitled to receive due to Gem’s illness, too. That practical support and signposting was invaluable.”

“We bounced back and forth between home and visits to the Hospice for about eight months. Gem had some complementary therapies, which I was also offered, and they were great – exactly what they needed to be at the time, hugely calming during a difficult time. They ranged from massage through to reflexology, Indian head massage, aromatherapy, and a guided relaxation session that we used to do online, which was brilliant. It was about a 40 minute session and invariably Gem and I would end up asleep on the sofa by the end of it, it was so relaxing.”

As Gemma’s illness progressed, she needed increased medical and nursing care, and was admitted to the IPU on 24^th November 2021, for end-of-life care.

“It was in the midst of Covid, so we had all the testing to go through, but that didn’t matter. Everyone was friendly, the receptionists, absolutely everybody that I spoke to. One of the first things I was offered was a cup of tea! I just wasn’t expecting that. It was a real bit of care and compassion, and it was much needed. The sense of relief I saw in Gem once she was admitted was absolutely incredible. Her face relaxed, her body relaxed and she was at peace. It was just a wonderful environment.”

“The room that Gem was in was fantastic,” said Adam. “She had a lovely view out to the garden, a television, a fancy bed that had all sorts of wonderful functions that I didn’t quite understand, and the chair that I sat in was really comfortable, I wish I had one myself at home! Vanessa and Alison would pop along periodically to offer Gem complementary therapies, and again that was just a lifeline. I was lucky enough to receive some myself as well, which was a real stress relief during such a horrid, turbulent time. We needed that soothing blanket wrapped around our shoulders at that time and that’s exactly what was provided.”

On our IPU, Gemma was cared for by our specialist nursing team, who are there for our patients 24 hours a day.

“I have never witnessed such care in my life,” said Adam. “They really showed such human kindness and genuine empathy. It wasn’t sympathy because it wasn’t a patronising form of care, it was very, very respectful. Above all, they listened to Gem’s needs. How they could be so professional and yet so compassionate at the very same time was really quite something to behold. It was a beautiful mixture of the two elements.”

Gemma was also visited and monitored by our specialist doctors, and offered counselling and pastoral care.

“Personally I’ve always been a huge fan of counselling,” said Adam. “I think it’s so important to be able to open up and talk about issues, and discover things inside the box that you didn’t even know existed. Gem was a little more reticent initially to be seen by a counsellor, such was her nature. Eventually I was able to persuade her to attend a few sessions, and I can say hand on heart that I saw a difference in her calmness. She was a supremely calm lady by nature anyway, but I could see her being a bit more accepting of her fate and calm in her nature.”

Jill, our Lead Chaplain, also met with Gemma and offered her pastoral support. This support is available to all our patients, whether they have a faith or not. It is not particular to any religion or set of beliefs; the team is simply there to listen and talk with you about any matters which are important to you. Pastoral care recognises and responds to the needs of the human spirit, in whatever situation a person finds themselves. It can include supporting people as they explore their sense of meaning and purpose in life, evaluate their self-worth, or explore how to express themselves. It can also simply mean being a sensitive listener. The Hospice also has a small quiet space, traditionally known as the ‘chapel’, which is open to everybody for quiet moments of reflection.

“Jill came along to see Gem on a number of occasions. It’s fair to say Gem had no faith, but that didn’t matter. Jill was respectful of Gem’s absence of belief, and they used to have frank and honest conversations, and just talk through how Gem was feeling at the time. There was no judgement; there was nothing remotely pressurising in trying to force you into adopting any level of faith if you didn’t have one. It was just a source of comfort, somebody kind to talk to. And, above all, Jill was supremely kind. I remember Gem visiting the chapel just before she died. They had some little star-shaped pieces of paper which you could write a thought or prayer on, and an area of the wall where you could hang your star up. Gem wrote one and put it up. It was a beautiful thing to do. The chapel was wonderful to have, I visited it on one or two occasions just to have some quiet time, away from monitors and buzzers and whatnot. It was nice to get some head space. Whether you have faith or not, it’s a nice place to be. It’s a beautiful little chapel and I challenge anyone not to find that inner peace that everyone needs at that awful time in their life.”

As Gemma was admitted to our IPU at the end of November, she was there when we held our annual Light up a Life service. This service remembers all those who have died, whether they were cared for by Phyllis Tuckwell or not, and celebrates their lives. Everyone who wishes to is invited to gather around our Hospice Christmas tree, which we put up outside the entrance to the Hospice, and join us for readings and carols. During the service, we switch on the Christmas tree lights, with each light reminding us of those loved ones whom we miss. Gemma and Adam both came along to the service and found it a very poignant evening.

“The Light up a Life service was of huge relevance and importance to Gem at the time, and to me too. It was about three days before she died. It was a cold, wet, miserable evening. We helped Gem into a wheelchair and took her onto the ramp area just outside reception. We gave her a blanket and made sure she was comfortable, and I held an umbrella over her head. It was the last time that she really went outside. The service provided the light undoubtedly that was required in our lives. It was one of the most beautiful, moving services that I’ve ever been to. And despite Gem having no faith as such, I could see that it meant a huge amount to her. When I got home that evening I had to send her a message to say I hope it wasn’t too much for her, as it was hugely emotional, and she just replied and said well that was the idea, it’s supposed to be emotional, so I knew it had struck a chord with her. It was a significant moment. I think we both knew that the end was fairly close, and that we had that time together to just be in the moment. It was very poignant, very powerful.”

Gemma stayed on our IPU for 14 nights. Towards the end of that time, she went rapidly downhill and had to be taken back to Frimley Park Hospital for a night.

“Gem had various waves of what’s called Addisonian crisis, in her final few weeks of life,” said Adam. “She was taken to Frimley Park Hospital early one morning and stayed there until the following evening. It was about a 40 hour stay, and they did the very best they could, but it became apparent that the palliative care element was required, and I insisted that I need to get Gem back to Phyllis Tuckwell because I knew that she didn’t have much longer left.”

Gemma and Adam returned to the IPU for Gemma’s last few hours of life. She spent one final night at the Hospice, before she died the following day.

“The next day I called Gem’s father at seven o’clock in the morning, as things were going downhill quite quickly. He came up to the Hospice along with Gem’s sister and stepmum. We were all there with her, by her bedside. I held her head, her father held her hand and she died peacefully. If I could choose the way I was going to go, it would be that way.”

“Gem spent 14 nights of the highest quality care that anyone could have towards the end of their life. She received fantastic care, pain relief, counselling, pastoral care – a whole wave of different elements of care, and I could see her at peace. It really was a sanctuary for us. It was a very positive place in which we met people who gave us the care and compassion that we needed. They’re a very special bunch of people.”

As well as caring for our patients and supporting their loved ones during that patients’ illness, we also offer bereavement support to the relatives and carers of our patients. Adam was offered counselling before and after Gemma’s death, and is still receiving support from one of our counsellors now.

“The counselling I currently receive is from Chris. He is a truly exceptional counsellor and has been a constant source of direction and comfort. Often, I’ll tell him about whatever’s gone on that week and he will see things there that I didn’t even think about. He’s very compassionate, and his support is second to none. It provides a bit of sanity; it helps you to see that what you’re going through is entirely normal and to be expected. He’s been that steer that everyone needs at such a difficult time.”

“Gem was a truly remarkable lady, who is missed so much, every single day. She faced her illness with an utterly extraordinary stoicism, that frankly baffled me. ‘What else am I going to do?’, was frequently the answer to my questioning how she was able to maintain such strength, during very dark days. She was selfless and determined until the end. One of her many acts of kindness was one of her last; paying for Christmas meals for everyone staying on the IPU, in Phyllis Tuckwell’s Christmas silent auction.” “The care that we received from Phyllis Tuckwell was absolutely sensational. It was across the board. It included everything from pastoral care through to clinical care – we really got the support that we were in such need of. It gave us both a far better quality of life than had we not been referred. Don’t ever be afraid to call on the care that Phyllis Tuckwell provides. Don’t ever shy away from the word ‘hospice’, because it means something entirely different these days.  It’s a fantastic organisation, I can’t praise them enough.”