Rob and Kim's Story

Rob and Kim had only been married for a few months when Rob was diagnosed with bone marrow cancer. It was 2009, and they had been living in Houston, America, for two years.

“We loved it there, but I missed my family back in England,” says Kim. “My granddaughter was growing up and we wanted to spend more time with them all.” In 2015, Rob and Kim moved back to the UK, and Rob began receiving cancer treatment at St Bart’s Hospital.

“He was referred to a wonderful specialist there, but as his illness progressed he got weaker and weaker, and his pain got much worse. The journey up to London just got too much for him in the end,” says Kim.

As Rob’s condition deteriorated, he became more prone to infections, which required hospital treatment and left him confused and disorientated.

“Each time he was ill, he was taken to Frimley Park Hospital, which was our closest hospital. We got to know the team there and decided to transfer his care to them, as it was so much closer than St Bart’s. The treatment he received at Frimley was amazing; they were fantastic.”

Kim was Rob’s sole carer, and tried to look after him at home, whilst also working full time.

“Although I’m a UK citizen, Rob wasn’t – he was American, so I wasn’t able to claim any benefits for his healthcare, and I couldn’t take any time off work to care for him, as I needed to pay the bills,” she explains. “He was also a very stubborn man! He was fiercely independent and not very good at doing what he was told. He was so angry that he had to be cared for – he was furious! He had always been the carer, he always took care of me. I wasn’t allowed to take the rubbish out, carry the shopping bags, put petrol in the car – to him those were his jobs. As his illness worsened, he got more infections, and they would leave him very confused. I would help him into bed and instruct him not to get up, while I cooked dinner or washed up, but just a few minutes later I’d hear him getting out of bed. He fell over a lot, and one evening he managed to get to the top of our very steep cottage stairs, although I had ordered him to stay in bed. He fell all the way down, and by the time I got to him he was curled in a heap on the hallway floor. The type of cancer he had weakens the bones, and I knew by the position he was in that he’d fractured something.”

The ambulance took Rob to Frimley A&E and an x-ray confirmed two breaks, one a high spinal fracture, but they also found something more worrying. Rob had free air in his bowel, which meant that there was a rupture somewhere. The expectation was that he only had about 24 hours to live. “Somehow though, he survived again, and it was at that point that the doctors suggested Hospice Care,” says Kim. “Rob overheard them and said, ‘that’s it, I’m going to die’. To him, ‘hospice’ meant the end.”

“I wanted to make sure we made the right decision – Rob’s decision. The doctors suggested that Rob be admitted to Phyllis Tuckwell’s In-Patient Unit (IPU) for symptom management and discharge planning, as his was a complex case. Rob agreed to it, but he was very frightened. When he arrived there though, he was really surprised. It just wasn’t what he expected. It was amazing. Dr Nick came to meet us and he was so nice. He and Rob really hit it off. Rob was a very complicated patient. He had had many fractures over the years, and was taking a lot of medication. His condition was very up and down, too. He would do well for a while, then get symptoms again, then recover. It was like a rollercoaster. To watch him disintegrate like that was very painful. We expected him to die within two weeks of getting to the Hospice, and three more times while he was there, but each time he would get better again. He was just so stubborn. He told them “I’m determined not to die, I’m not leaving my wife!” Four months later he was still with us! We know that a stay on the IPU for that long is very unusual, but that was Rob. We took him home for a day, and it was wonderful, but his complex pain medication regime meant that staying at home was not an option.”

“During our time at the Hospice, the doctors and nurses there got to know Rob so well. He was a real personality, a bit of a character, you might say. They would always pop in and see him, even if they were just going off shift. One of them even brought her dog in to see him! They looked after me, too. They would make sure I had something to eat, and order me something if I didn’t have anything. They’d even lift the lid off the plate and make sure I actually ate it! Nothing was ever too much trouble; any time of the day or night, they were always there. I think he ate all of their ice cream! And when he wasn’t too ill and confused, we would have date night at the Hospice. We would order a takeaway, and if I had a glass of wine the nurses would always make sure I had a proper glass to drink it out of.”

“I would work four long days from Monday to Thursday, then go to the Hospice on Friday and stay until I went back to work the next Monday. I slept in his room with him. I would sleep beside his bed, otherwise he’d try to get out and fall on his face, or pull his oxygen mask off. So I stayed by his side. Claire, one of the counsellors, suggested I have some counselling sessions. I’d often bump into her on the IPU and she’d always offer it, but I said I’d be ok, I just needed to keep going.”

“Three or four times while he was there, the staff called me at home in the middle of the night to tell me I should come in, as they thought he was going to die, but each time he recovered. He said to Dr Nick ‘how do you expect people to die when you’re so nice to them?’ And they were nice, they were more than nice, they were amazing. I would never have survived without them – they were just so incredible. They treated him as a man, as a human being, not just a patient.”

“I think he became part of the furniture in the end; he was definitely part of the family. Mair, one of the nurses, was always so lovely. She would come in at the beginning of her shift, ‘just come to check on you’ she’d say. The Housekeeping staff would pop their head in the door too, and go in and have a laugh with him. It’s not just a job to them, they go way beyond anything you’d expect. Rob’s children came over from the States to see him, and his daughter said they still tell everybody how amazing it was at the Hospice. They couldn’t believe it was all free! They just couldn’t get their heads around that. Rob’s mum visited too – it helped her to know that he was being taken such good care of.”

“We spent the Christmas of 2018 at the Hospice. The staff made it as special as they could for us. On Christmas morning they left little bags of goodies for us outside Rob’s room, one for him and one for me, with nice toiletries and chocolates in. Some of them formed a little choir too, and came round one afternoon just before Christmas to sing us all some carols. They came to Rob’s room and asked me what carol I’d like. I chose ‘Little Donkey’ because it reminded me of when my kids were small, and they stood outside his room and sang it for us. It was just so lovely. They held a little Christmas party, as well. I have young grandchildren, who at that time were nine months and two and a half years old. My daughters brought them to the Hospice every day that Christmas, and my eldest granddaughter was so excited because Santa came to the party and gave her a present. She looked so surprised! ‘How did he know I was here?’ she asked! Rob had lost a lot of weight by that time, and was very ill. He didn’t know it was Christmas at all. I really thought he was going to die that day. My eldest granddaughter was too frightened to go into his room because he didn’t look like Grandpa anymore, so I met them in the coffee shop there, and that’s where we had our Christmas Day. My daughters brought the children’s presents with them and we opened them there. Caroline, the IPU manager, came round to see each of the patients and their families too, and gave me a big hug. It was a really sad but very special time.”

Every time Rob got an infection, he managed to get over it, but one morning Kim got a call to say that she needed to come to the Hospice because Rob’s condition had deteriorated badly.

“I knew it was coming. Rob had spoken to Dr Nick about how frightened he was of dying, and asked if he could be medicated as much as was allowed at the end. The doctors had listened to that and supported Rob’s request. I had stayed at the Hospice all day and night for the past three weeks, and by that last evening I was exhausted. I had stayed awake with Rob all night the night before, as we thought that the end was so close, but he was still with us. I finally went to sleep about midnight, and told Rob to wake me if he needed me. I think I’d probably only been asleep for about an hour when I woke up, and as soon as I opened my eyes, I knew he had died.”

“Carolanne, one of the nurses, came in. She was so kind. She said they would have to give Rob a little wash and freshen up in a while, and would I like to do it with them? I said I wanted to help, so Carolanne and I did it together. Afterwards, she opened the window so Rob’s spirit could leave, which I think is lovely. She told me I could stay there for as long as I wanted. In the end, I left at about seven that morning.”

“I’ve been back a few times since then. You’d think it was the last place you’d want to be, but actually it’s very comforting. I feel that if I walked down the corridor he’d still be there. Seeing all the doctors and nurses always makes me feel better. They got to know him so well, and when I go in they always talk about him, about how stubborn he was! He used to say ‘if you’ve got to die somewhere, this is a good place to do it,’ and he was right. They become like family. He wasn’t just a patient to them, they got to know him as a person.”