Roger M's Story

Having worked in the army for twelve years, and been a keen runner, swimmer and cyclist, Roger was used to keeping fit and active. “We would take the grandchildren swimming,” he remembers, “and go cycling on Sunday mornings.”

“We’d have a gentle cycle ride together,” his wife Liz laughs, “and then afterwards, you’d go whizzing off for miles on your own!”

Roger had gradually been forced to stop running due to arthritis in his knees. An operation had been scheduled in for December 2013, but by that time he was too ill with other conditions to undergo surgery.

“It all started in the October,” he remembers. Roger had contracted pneumonia, for which he was given antibiotics. A month later however, while holidaying on the Isle of Wight, he still felt ill. “I was cold all of the time and I just didn’t feel right,” he says. Unaware of what these early symptoms indicated, Roger went for his pre-op assessment in December, hoping to be up and running again in the next few months, but soon discovered things weren’t going to be as straightforward as that. A routine ECG revealed that Roger’s heart wasn’t functioning properly and doctors noticed that he still had breathing difficulties. In addition to this, the antibiotics which he had been given to treat his pneumonia had caused permanent damage to his hearing, a rare side-effect of this medicine. Postponing the knee operation, doctors referred Roger to a cardiac specialist. However, before an appointment had come through, Roger’s condition started to deteriorate further.

It was early January when Roger woke Liz up during the night, telling her “I can’t lay down or breathe”. They waited ten minutes or so, hoping that the feeling would pass, but as Roger’s breathing became more and more laboured, Liz decided to call for an ambulance. Roger was taken to Frimley Park Hospital, where he was diagnosed with fluid retention. “They drained the fluid,” says Liz, “but the next day it happened again – he was like the Michelin man!”

CT scans confirmed heart problems, but further tests revealed that this was not all that Roger was facing. Doctors had discovered a pelvic bone tumour. A biopsy confirmed the cancer, and chemotherapy was discussed, but Roger was too ill for this to be an option. Instead, he was given a course of radiotherapy to combat the tumour.

“It was only the third session, when my bowels started playing up,” Roger remembers. “It got worse and worse until I had these chronic stomach cramps.”

When Roger returned to hospital for his fourth bout of radiotherapy, the nurses there took one look at him and sent him straight to A&E. The radiotherapy had caused complications which had stopped his digestive system from functioning properly. He was kept in hospital – with a nasal drip to keep his fluid levels up – and was not allowed anything to eat. “He deteriorated fast,” remembers Liz. “He kept blacking out. They thought it was panic attacks, but it was lack of food.”

After being discharged from hospital, Liz took Roger to St Luke’s for his next radiotherapy session, but he collapsed again and re-admitted to hospital. “It was the beginning of a living nightmare,” she says.

Over the next few weeks Roger’s condition continued to deteriorate. Doctors discovered that the right side of his heart was failing and confirmed that a pacemaker would have to be fitted. As Roger struggled to recover from this operation, his kidneys then failed. He began to lose awareness of where he was and who those around him were. “He tried to escape from Intensive Care,” remembers Liz. “He was convinced that I wasn’t his wife, but that I was one of the hospital staff. And then another day he proposed to me! But we’ve been married for over 40 years!”

Although Roger and Liz can laugh about it now, it was very distressing at the time.

“It was July last year,” Roger remembers, “and we were told this was the end”. Roger was moved from the Royal Surrey County Hospital to Frimley Park, where he was under three consultants – one for his hearing, one for his heart and one for his cancer. He was eventually discharged, but it was only a week before he was back again.

“It happened every Friday night,” Liz says. “We’d spend the week at home, then Friday night would come and Roger would get worse, and I’d be back on the phone again, dialling 999.” Roger’s bowel condition had worsened again and he was admitted back to hospital.

“We did every ward but Maternity!” he and Liz joke, but at the time it was no joking matter. Roger was moved from observation wards to isolation wards, depending on how ill he was each day, until eventually a consultant in the Palliative Care team suggested he be referred to Phyllis Tuckwell Hospice Care. “I just thought, ‘that’s it, my time’s up’,” says Roger. “Both of us were so apprehensive.” “We just did not want to know,” adds Liz. “We were so scared.”

One of Phyllis Tuckwell’s Community Nurse Specialists (CNSs), Dereca, made an initial visit to Roger and Liz at their home, inviting them to come and have a look round the Hospice building – and the couple decided to bite the bullet and go. “We didn’t wait – we just thought ‘ok – let’s go and have a look’,” Liz nods.

They were met at the Hospice the following week, where Roger was given an assessment and the couple were shown around the In-Patient Unit and Day Hospice. “Everybody was smiling; there wasn’t one miserable face,” Liz remembers, smiling herself at the memory. “So we decided to give it a go, and Roger started his Day Hospice sessions that December.”

It was at this point that things started to move much more quickly for Roger and Liz. Roger was offered weekly sessions with Phyllis Tuckwell Physiotherapist Sue, who helped him to slowly strengthen his muscles in order to regain his mobility, independence and confidence. Her colleague, Occupational Therapist Liz, visited Roger at home to assess his condition and evaluate his need for specialized equipment.

Roger was initially booked in for twelve weekly sessions at Day Hospice, but as staff and volunteers learnt more about his condition and worked hard to get him back on his feet, his sessions were extended, until he was eventually discharged after seven months.

Whilst Roger was being looked after by Hospice staff, his wife Liz took the opportunity to confide in Day Hospice Sister Karen, about how she was coping with her husband’s illness. During one of these conversations, Liz mentioned that, while Roger was visited at home by carers, he had not seen a doctor since being discharged from hospital. Karen immediately spoke to Phyllis Tuckwell’s Dr Nick, who met with Roger before then updating doctors at Frimley Park Hospital on his progress.

“We’d got lost in the system, but suddenly we were back on the radar again,” says Liz. Roger is now visited fortnightly by a heart matron, and sees a cancer doctor every six weeks, who has happily given him the all clear, but needs to perform regular blood tests to check that the cancer has not returned.

Although Roger’s medical treatment had begun again, it soon became apparent that he was suffering from more than just physical symptoms. At Day Hospice – as at home – he was withdrawn, shying away from company and sleeping for hours at a time. He ate very little and spent most of his time in his bedroom. At the Hospice, he excused himself from mealtimes after just a few mouthfuls of food, retreating to a chair where he would read the paper or doze. He was unable to talk for more than a few minutes at a time and would struggle for breath during conversation.

Seeing his distress and anxiety, Karen suggested that he meet with Phyllis Tuckwell counsellor Martin, which Roger agreed to. Martin immediately referred Roger for a series of sessions with psychologist Nigel while Karen suggested that he also see hypnotherapist Andrea. “That’s when the turning point came,” Liz smiles. “You just woke up.” “Everything changed,” Roger nods in agreement, “It all seemed to fall into place.”

By the end of his second hypnotherapy session, Roger had slowly started to eat more of a variety of foods again, instead of the few mouthfuls of Weetabix, porridge or mashed potato which had been the only foods he had previously been able to manage. He also started to leave his bedroom to spend time in some of the other rooms in his house – for just a few minutes at first, then slowly for longer and longer.

Since falling ill, Roger had become increasingly dependent on Liz, deferring to her for all decisions, and sometimes even unsure what day of the week it was. “I’d get asked questions by the doctors, and I’d just say – ‘I don’t know, you’ll have to ask my wife’,” he says. “I’d call her ‘my manager’!”

“His confidence was shot to pieces,” Liz nods. He couldn’t do even little everyday things, like going to the toilet or having a shower.”

However, the staff and volunteers at Phyllis Tuckwell have turned that around for the couple. Physiotherapist Sue – whom Roger and Liz describe as ‘an amazing lady’ – has given Roger exercises to help him strengthen his muscles, particularly those around his knees, which still cannot be operated on because of his heart problems. He also has acupuncture to relieve the pain in his legs and knees, regular massages, and counselling and hypnotherapy to increase his confidence and help him manage his anxiety. As a consequence, he is now stronger both physically and emotionally. And he is improving all the time. “Two weeks ago I couldn’t have lifted and held a bath towel up,” he confides. “I would have had to have it draped on something so I could dry myself against it. Now I can hold it up myself. I still can’t quite reach to dry my back or feet, but it’ll come.”

Roger has also progressed from being pushed around in a wheelchair to walking on his own, using his wheeled frame for support. He has also now swapped that frame for just one walking stick for short journeys, and remembers with pride the day they arrived at the Hospice and Liz stood with staff, watching him walk from his car to the building’s Dove Lounge with just his stick for support. He did the same over the summer, when the couple travelled down to Hayling Island for a short holiday. As they walked along a path by the beach, Roger looked over at the sand, telling Liz that he would like to walk on it, beside the waves. As Liz went to fetch her camera to capture the happy moment, Roger then continued down onto the sand without her, something which he would have had neither the courage nor the physical ability to do just months before. “His face was an absolute picture,” beams Liz proudly. “His confidence and physical strength have increased so much.”

When asked about her own emotional needs, Liz nods. “The pressure point for me had been seeing him unable to eat,” she says. “I thought it was something that I would have had more control over, but instead all I was doing was buying food to feed the dustbin every week. I was at my wits’ end, watching him fade away. I often felt a complete failure, and would hide and cry. I felt so distraught, watching the brave man I knew disappear in front of me.” Nigel suggested that Liz come along to Roger’s counselling sessions with him, which she has now started doing. She has also attended a Carer’s Pampering Day, where she had a make-over, haircut and full body massage, and met hairdresser Jackie, who now visits her at home, to cut her hair for her there.

Liz and Roger have both attended Wellbeing Workshops at the Hospice, where they have learnt relaxation techniques, and Roger is now able to sit down and make himself relax when he feels anxious about something. As Liz works full-time, carers visit Roger during the day, to help him get out of bed, and get washed and dressed – and plans are in place for a Hospice Home Support volunteer to start visiting him too, to chat with him or take him out for a few hours.

When asked how they feel about Phyllis Tuckwell, both Roger and Liz smile. “It’s one of the happiest places,” says Liz. “Nobody’s down, everybody has a smile, and everybody is so positive. They all have time to talk and to make you feel special. Everyone – without exception – has helped to turn our lives around.”

“I look forward to coming,” says Roger. “Coming here has given us a future.”

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