"I have dispelled the hospice myth by coming here'

With the theme of connecting care at the centre of this year’s hospice care week, we look at the ongoing relationship between patients and staff at St Elizabeth Hospice and how these progress and change as the patient’s needs alter over time.

For Maxine Gould, all her original anxieties about coming into a hospice have completely gone.

She said: “I have dispelled the hospice myth by coming here.”

After her first visit to St Elizabeth Hospice in spring 2015 as a cancer patient, Maxine, 50, admits: “It is not until you access services that you realise just what is being done.

She admitted to having felt extremely nervous before her initial visit to St Elizabeth Hospice but very quickly she relaxed.

“Everyone is so friendly, nurses even called me at the weekend to make sure I was OK and to check I have everything I need. I cannot fault the place.

“Because of the help and support I am being given, I am still able to be here and be me, both physically and emotionally.”

Her consultant in palliative medicine, Dr Alison Blaken, also remembers how uneasy Maxine was when she first made contact with her at St Elizabeth Hospice:

“She really was very nervous, so from that first meeting we began to focus on her specific needs and what is necessary to empower her to live her life the way she wants to live it.”

Maxine is a registered nurse and, as such, she has visited St Elizabeth Hospice several times on professional training days but she never imagined returning one day as a patient.

She said: “Being told that I had ‘probable cancer’ and seeing from the scans that there was no ‘probable’ about it, was the most stressful part of the process, worse than learning that it is terminal. You can never know what it feels like until it happens to you. Time really did stand still with little support.

Maxine admits that having a nursing and pharmaceutical background makes it easier, in some ways, as she tends to have her ‘critical eye’ open at all times which helps her to keep her focus positive.

“On hearing that I have cancer, I found myself reacting to life but not properly functioning. I made a funeral plan within a week – contacting a funeral home, asking a friend to sing on the day: I put up my Christmas tree early just in case I didn’t make it to December.”

Fortunately instead, Maxine found herself waiting for surgery, but with no real support so she took herself off to the library to read up on her condition. It was knowledge which empowered her again and when she had her first round of chemotherapy she couldn’t refrain from checking dosages herself. Through this taking of control, she began to rebuild her confidence.

Dr Blaken recognises that need for empowerment in Maxine and says: “We always use that ‘can do’ attitude and look at what it is that Maxine wants to do before we then work out a way of enabling her to do it.”

Maxine is involved in various support groups, including a forum for bowel cancer patients and derives much strength from these and from listening to the stories of others. She also speaks at a variety of other forums on behalf of Ipswich Hospital’s cancer centre.

“Cancer, in a snapshot, changes you. With it you suddenly start to take stock of life and appreciate people, life and the little things in it.

“The cross-referencing support of both the hospital and St Elizabeth Hospice is helping to keep me comfortable and provide me with a good quality of life.

“I decided, whilst in hospital, that I wanted to have treatment at the hospice. When I come here, I have all the help and guidance I need and I don’t feel alone anymore.”

Maxine regularly meets with Dr Blaken and enthuses: “She is so forward-thinking; for my adventure trip to Wales, she worked out a treatment plan in order for me to tackle the pain as and when it came. I call it my ‘hospice-in-a-bag’ kit! It takes so much pressure off me.

“Dr Blaken even discussed arranging for clinical staff in the area to have intravenous treatment ready for me if I needed it, which, fortunately, I didn’t. But it was such a comfort to know that I was prepared.

“It meant that I was able to have a really special week away, doing things I never thought I’d manage to do, like abseiling down a slate cliff face and across a stone quarry. It was awesome!”

Maxine has taken advantage of a foot massage on her recent visit to the hospice and is not averse to trying other therapies – and even the gym.

She has also had some music therapy sessions, during which she recorded a harp track. She had never played the harp before, but, with Ray Travasso’s guidance and backing music, she was able to.

“He asked me to describe where I was in my head whilst playing; I told him that, as a scuba-diver, I visualised myself under the sea, watching sharks.”

Maxine fosters a very positive outlook on her life, wanting to live it fully and have experiences while she can. She says that she does not want to look back from her bed and wish that she had done more.

“Cancer isn’t a death-sentence; it teaches you to live life.”

Maxine’s family and friends and family are strong supporters for her. Whilst Maxine struggled to tell Astyn-Jerai of her diagnosis, her love and acceptance are hugely important.

Maxine agrees with all of the visitors to St Elizabeth Hospice about how the dining room is the hub of the place with staff, patients, families, volunteers and visitors all enjoying their meals together and the high quality of the food served by her cousin Graham and his catering team:
“It’s all so delicious and fresh.”

Maxine is keen to give back to St Elizabeth Hospice and began doing this even before she started to use the services.

She volunteered to speak at the annual Midnight Walk fundraising event. Maxine was the first-ever patient-speaker who addressed the 1,500-strong crowd at ITFC and shared with them some of her experiences. Her audience listened attentively and many of them found strength from her words to help them around the more difficult moments of the course.

She explained, most powerfully, what it is like to have St Elizabeth Hospice to turn to for care and support: “I am a daughter of Caribbean immigrants, I am 50 years young, I am a mother to my beautiful daughter, I am a sister, I am a registered nurse, I am a friend. I have terminal cancer, and I am still me.

“I have chosen to spend my poorly days, whenever they may come, at the hospice. The perfectly chosen team of staff from St Elizabeth Hospice, and their hospice at home team are working to aid my right to live life to the full – and live life while I’m alive, I will.

“I thank the hospice for the daily care I receive, for making me smile and the visits with the amazing Dr Blaken, ensuring my care needs are fully met.”

It is now seven months since Maxine’s first visit to St Elizabeth Hospice as a patient and she is preparing to begin a phased return to work. Her visits to Dr Blaken continue as does her involvement in the life of the hospice.

Maxine intends to get her Christmas tree up as early as possible again this year, but this time, because she just loves it.

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