Ruth & Tracy’s story

“As a gay couple we felt completely accepted at St Clare. What was so nice was I didn’t need to even have a discussion about it, all the staff referred to me as the next of kin. I found consistently with St Clare that every member of staff said ‘Yeah, we can make that happen’."

“My partner Tracy was first referred to St Clare by her oncology nurse after being diagnosed with breast cancer in April 2012. During the course of her illness, she had two stays on the Inpatient Unit to help manage the pain and other symptoms of her cancer and was also cared for by the Hospice at Home team in the final weeks of her life before her death in May 2015.”

“When St Clare was first mentioned to us, I was so relieved. They said they would help us manage Tracy’s pain, which was overwhelming.”

“But somewhere along the line, there was a miscommunication because Tracy thought she was going to the Hospice for the day, not to stay. When we got there and it dawned on her she was going to become an inpatient she just shut down and said ‘No I’m not staying here’. She was a very decisive woman and when she didn’t want to do something then she wouldn’t do it. I remember the staff looked at each other, as if to say, ‘What are we going to do?’ They realised this wasn’t going to be good for Tracy and at the end of the day it was her decision, so we went home.”

“It was a very difficult time both for us a couple, and for the wider family. After thinking about it for a bit, Tracy came to the decision to go back to the Hospice for symptom management.  Once she had decided to go back herself, she was content about it because she was in control of the decision.”

First stay on the Inpatient Unit

“This was May 2012 and she was still able bodied and had a good appetite so she enjoyed the food service. There was also the Hospice shop and one day she walked there from her room and bought me a bag of gifts; it was beautiful and I was touched, I said ‘Oh you’ve been out shopping!’ In those early days of her diagnosis, we did many walks around the Hospice gardens, enjoying the early summer weather.”

“When I first met Tracy, she was quite fit. Her hobby was dancing and she was a talented salsa dancer. Even when she was ill, she would do these high kicks despite the worst of the cancer being in her pelvic bones.”

“I remember one day, when it was time for Tracy to be discharged from St Clare she said ‘Come on then babe let’s go home’ and did this high kick with her legs. This was after two weeks at the Unit and the pain meds had obviously worked. She was chipper and we were able to get on with our lives for quite a while.”

“But things began to go downhill. Tracy started on chemotherapy and the side effects were dreadful – her feet blistered up and she could barely walk. This continued when we took our one and only holiday, a trip to Greece and Tracy became very ill from exposure to the sun, a real no-no when on chemotherapy. But I knew not to nag her about it; she said, “I’ll just have a couple of hours on the beach,” but unfortunately she paid for it!”

Support from Clinical Nurse Specialists

“So we lived as normally as we could for the next two years. Then we got the dreadful news that the cancer has spread to her peritoneal cavity during an emergency admission to hospital.”

“I’ll never forget sitting in one of those side rooms with the consultant. I asked how long Tracy had to live. The answer I got was a few months.”

“We got back in touch with St Clare and developed a much closer relationship with our Clinical Nurse Specialist (CNS), Chris, who was amazing. Chris made us feel calmer and gave us confidence; she made us feel safe.  I was to discover during 2014 and into 2015, that when you saw Chris more frequently, it meant that you were closer to death.”

“Without St Clare in our lives, it would have been very lonely.”

“From October 2014 onwards it was a very frightening time for us both. Tracy had phenomenal swelling of her abdomen and the pain meant she could barely lie down. We went to Princess Alexandra Hospital on Christmas Eve to have her abdominal ascites drained and this meant that she could eat her Christmas dinner.”

“I remember thinking, this is the last Christmas we will ever spend together.”

“By April, things had become progressively worse and so we went back into St Clare.  Now looking back, I realise that Tracy was dying.”

Returning to St Clare

“One of the massive benefits of being under the care of St Clare was that I could stay with Tracy, day and night.”

“All I remember at that time is the comfort of the Hospice building. Being in the space, going to the kitchen, sitting on the sofas, putting a sofa bed into the bedroom and making my bed. And I remember feeling like I was allowed to be in the space.”

“Tracy had two dogs, Barney and Reenie and it was amazing that they could just trot around the room and in the gardens.”

“I was always corralling them to keep them in the room, worried that if they chased the rabbits they would end up running onto the M11!”

We felt completely accepted

“As a gay couple we felt completely accepted at St Clare. What was so nice was I didn’t need to even have a discussion about it, all the staff referred to me as the next of kin. As the person who would make the main decisions.”

“I found consistently with St Clare that every member of staff said ‘Yeah, we can make that happen’. There was choice and respect. You’re in St Clare for the worst reasons but everything else should remain normal and so it was the ideal response. If you ask any gay person, the perfect response is no response. It’s the same for any marginalised group of people: you want to be recognised but you don’t want it to be a song and dance.”

“You want the equality of access without it being extremely unusual or the sense that people are making special adjustments for you. And we didn’t feel any of that. It was the perfect fit.”

Returning home

“After about 10 days on the Unit Tracy got her ascites drained by Dr Qamar. We were surprised because very little came out. We thought there would be litres of it and so Qamar took me into a side room. He said ‘Let’s talk about what’s happening’. And I said ‘OK’. ‘I think we’re looking at a couple of weeks,’ he said to which I responded ‘What do we do? Do we tell Tracy?’ Qamar said ‘Yes I think we should’.”

“I remember trying to tell her she only had a few weeks, but it just didn’t register. Her reaction to me was, ‘Right that’s it, I want to go home’ so that’s what we did.”

When they got home Tracy continued to deteriorate. The Hospice at Home team and the community Clinical Nurse Specialists supported them both and a night sitter came for a few nights to enable Ruth to get some rest. It was an exhausting time.

“On the 15th May 2015, Chris, the CNS crouched down with me, beside Tracey, and said ‘Ruth we’re looking at 24 hours’, and she was right, almost to the hour. When Tracy died the District Nurses were fantastic. I called them immediately and they came in and changed Tracy’s clothes and made her look lovely. That was 8 o’clock in the morning and I didn’t let the undertaker take her until 9 at night, just so I could be with her. All my closest friends came over and we spent time with her.”

Telling our story

“I’m really keen to tell our story because these are hidden stories. I have other gay friends who are bereaved. We call ourselves “the lesbian widows” and feel that we are an invisible group.”

“Women who are 50+ are invisible anyway but gay women who are widows just don’t exist. So I’ve always felt there is a very important opportunity to tell our story because for me this isn’t about my partner that died, it’s about the manner of dying while she was alive that is the point, and that would have been ten times worse without the Hospice, but it was still awful.”

“The treatment we got from St Clare is so positive and I still think people need to know that your gay partner who is dying is going to be given dignity, the same as anyone else, and the living partner will also be treated with dignity. I want that story out there.”

– Ruth

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