“Gus had been a heavy smoker all his life,” said his wife, Caroline. “He’d developed a cough, and was sent for what we thought was a fairly routine chest x-ray, but afterwards they gave us the news that he had lung cancer.”
Gus was diagnosed in October 2018, and was given chemotherapy treatment for the next six months.
“His condition stayed fairly stable,” said Caroline. “He had a break for a few months, and then in early 2020 started on immunotherapy treatment. Unfortunately it wasn’t as successful as they’d hoped it would be. He had one session, then a double dose just before the first Covid lockdown, so it would last longer and mean he didn’t have to go back for the next dose so soon. Six weeks later he went in for tests to see how things were, and it was then that they found he had secondaries in his brain, and his diagnosis was now terminal.”
Gus had been assigned a Macmillan Nurse, and Caroline had spoken to her about her worries. “I told her I was concerned about the future, and she said she would refer us to Phyllis Tuckwell when the time came. Gus and I had lived in the local area for over 20 years, so I’d heard of Phyllis Tuckwell. I’d also had a close friend who had been cared for at a Hospice on the Isle of Wight, so I knew how wonderful Hospice Care was. It was reassuring to know that Gus would be cared for by them, but when it actually happened I wasn’t quite ready.”
When doctors informed Gus and Caroline that his diagnosis was now terminal, Gus’s Macmillan Nurse told them that she was going to refer them to Phyllis Tuckwell. “Because of Covid, she couldn’t tell us in person,” said Caroline. “It was hard hearing something like that over the phone, and I think she found it hard telling us that way too. We’d already discussed how Gus would be cared for as his illness progressed, so it wasn’t a surprise to me, but we had hoped that the treatment he’d received would slow it down a bit. I wasn’t quite ready for the terminal diagnosis and Hospice Care referral. I just needed 24 hours to come to terms with it. I asked her if we could think about it, and then rang her back the next day and said ‘yes please refer us’.”
Soon after speaking to the Macmillan Nurse, Caroline received a phone call from Ursula, one of our Clinical Nurse Specialists (CNSs). Our CNSs are often the first to see those who have been referred to our care. They assess each individuals’ needs and the needs of their families, offer symptom management, and can refer patients on to other teams within PT if needed, who can offer therapies, counselling and practical support. They can also talk to patients about the care they will receive during their last days. Some patients are cared for on our In-Patient Unit at the Hospice, where they can receive 24 hour medical and nursing care, while others are cared for at home by our Living Well and Hospice Care at Home (HCAH) teams, who can visit daily and are always at the end of the phone if they are needed. Ursula referred Gus on to Olga, one of our Occupational Therapists, who came out to see him and assess his needs.
“My goodness, Olga was effective!” said Caroline. “Gus’s needs hadn’t really changed by that point, but she looked ahead to the things he would need and made sure we had them set up and ready for him. She decided Gus would need a stair lift, and that we should also have grab rails put up at the door and front step. She ordered him a hospital bed, too. Gus didn’t need any of them when she visited, but by the time they were delivered and installed he did.”
“In May, when he was given his terminal diagnosis, Gus didn’t have any particular symptoms. He stayed like that until around July, but then things changed quite quickly. He got drop foot in one of his feet, and was having trouble walking. One of Phyllis Tuckwell’s Physiotherapists arranged a Zoom call and showed him some exercises he could do to try to strengthen the muscles in his foot. He wasn’t walking much by that point though, and his other symptoms started to worsen then, too. It was all compacted into a short timeframe.”
As Gus’ condition deteriorated, Ursula called Caroline to discuss the next steps. Gus wanted to remain at home, and Caroline was determined that he should. Ursula suggested referring Gus to our Hospice Care at Home team, who care for patients who are in their last weeks and days of life, visiting them daily to provide nursing and personal care, and supporting them and their families emotionally, too.
“The Hospice Care at Home team were just wonderful,” said Caroline. “They would come once a day and stay as long as they were needed. It was the height of the pandemic by then and they would all have to wear full PPE for each visit, but it was alright, we were all used to it by that point. It didn’t get in the way of the care they provided.”
“Two of the team would visit each time, and it was usually the same people, so there was a nice consistency there and we got to know them really well. They would chat with Gus and jolly him along. He had always been a very sociable person and liked the company of others, so he looked forward to their visits and would chat away with them. They provided personal care – washing and dressing him, making sure he was comfortable, and even washing his hair for him. Gus was prescribed 15 different pills a day at that point, and was starting to get a bit difficult about taking them all. If I was having trouble persuading him to take them, the Hospice Care at Home team would always manage to talk him round and get him to take them. It wasn’t long after that that Ursula spoke to Gus’s GP and District Nurse to reassess his medication. He was starting to have difficulty swallowing, and Ursula saw that some of these tablets were unnecessary now that his condition had progressed so much. She spoke to his GP about changing his prescription and switching to liquid medication when he needed it, which Gus found much easier to take.”
“As well as looking after Gus, the Hospice Care at Home team also supported the family too. They were never in a hurry – they would stay for anything between 40 minutes to an hour, and spent quite a lot of that chatting to me or to our daughter, Victoria. It felt like we were just chatting, but looking back they were clearly making sure we were all alright. They would even say hello to the dog! Toffee is our six-year old Cavalier King Charles Spaniel who was bought for me as a birthday present but who always really belonged to Gus! He adored her, and she was one of the reasons he didn’t want to die in hospital – he couldn’t have borne not having her with him. One time, when Ursula was visiting to talk to us about Gus’s illness and care, she asked him if he had any concerns. Gus replied that he did… ‘It’s the dog’ he said gravely. Ursula didn’t laugh, to her credit! Gus was much more concerned about Toffee than about himself!”
As Gus’s needs increased, Ursula told Caroline that she would like to arrange for some carers to visit him daily, to give him a bit more support during the day. “I was very nervous,” said Caroline, “but I needn’t have worried. Ursula put us in touch with a wonderful agency. The Manageress called me on Zoom to find out a bit more about Gus’s condition and needs, and I said that I thought one visit a day would be fine. She suggested putting him down for four visits a day, and she was right – he needed that by then. They were all so nice and kind to him. Gus had both male and female carers visit, and the women called him ‘Gus’ or ‘Mr Gus’, while the men all called him ‘Sir’, which I thought was rather lovely.
“A few days before Gus died, I had a phone call from Phyllis Tuckwell asking if I would like a night carer to sit with Gus overnight, so I could get a good sleep. I said no at first, thinking that I didn’t really need it, but then thought again and said yes. I was really tired, and it was a relief to have someone else there supporting us both overnight. Our night carer was called Charlotte and she was absolutely lovely. I was very glad she was there in the end, as that night turned out to be really difficult. Charlotte had to call the Nurses twice during the night, and I was so glad to have had her there, as I’m not sure I would have known what to do if I’d been on my own.”
“Gus died on 19th August 2020. I was fully prepared and had been able to ensure that our son and daughter were both here with us. I had been frightened that I would be on my own, because of Covid, but I wasn’t at all. The care that he had received from Phyllis Tuckwell – that we had all received – had allowed us time to come to terms with his illness. It’s a bit like a watch running down. They enabled Gus to remain at home, where he wanted to be, and he was able to die with his family around him and his beloved dog at his side.”
“Since Gus’s death I’ve been offered bereavement counselling by Phyllis Tuckwell, but I haven’t felt that I’ve needed it. From minute we were given his diagnosis I knew his time was finite, but I was ready for that, and when he died I was well prepared.”
“The Hospice movement is so wonderful and so needed. Some people want to die in hospital, which is fine, but some don’t, and we are lucky in this area to have Phyllis Tuckwell to care for those who don’t.”
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