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My Mum, Rosemary was diagnosed with Lung Cancer on my birthday in September 2013. Mum had been suffering with back pain for over 12 months, and whilst she had visited the Doctor on several occasions, and even told them she thought it was Lung Cancer, this was never identified. Sadly due to the late diagnosis, Mum’s cancer has already progressed to her adrenal glands before she was able to start treatment.
My Mum and my Dad, Jim, (pictured here) wanted to ensure I was able to enjoy my birthday, and having plans with friends, Mum and Dad chose to wait until my celebrations had passed before sharing the life changing news. They had known for two days before telling myself and my sister, Katie, who lives in Germany. Mum and Dad approached it with positivity, Mum was always a fighter and not one to let anything stop her from doing things. I didn’t know what to say, and Dad just said ‘there’s nothing you can say, we’re just going to get on with it’ and I recall thinking how? Our lives have just changed forever.
Initially Mum was told she would have several months to live, and I thought ‘What does that mean? How long is several months?’ It seems really strange to say it, but as I reflect, the uncertainty was more difficult to deal with than the actual reality. Mum focused on living rather than dying and as a family we supported her and took one day at a time.
Amazingly Mum’s fighting spirit meant that she went back to work straight away and whilst I thought how can I possibly focus on work, if Mum could do it, I needed to continue too. I returned to work as a yoga instructor and whilst this news rarely left my mind, somehow I found this a bit of a welcome distraction. Mum remained so determined, I began to do everything I could to support her. I had always known about how a clean diet, holistic therapies, and the power of the mind could really help. I embarked on researching further, and introducing Mum to lots of new ways to help her focus on giving herself the best chance possible of living well. Mum had two rounds of chemotherapy, several months apart, which were six sessions each time, at three-week intervals. Even during this difficult time, she continued to work as much as she could.
In February 2015, whilst at the hospital Mum was introduced to a lady called Carole, Carole worked for the Hospice as a specialist palliative care nurse and she was able to help Mum with pain control. Carole visited Mum at home in Ely to see how she could help. Mum’s cancer was painful and Carole offered some different options, which Mum could try. The following month Mum attended a pain control clinic which Carol had suggested which was also held at the Hospice.
In July 2015, Mum picked up an infection and she was admitted to hospital. This was a really tough time. Dad wasn’t able to stay in the women’s only ward over-night, and we were so worried that Mum wouldn’t make it, we didn’t want to leave her. The restricted visiting hours made it difficult, but on a couple of the really bad days, myself and my Auntie Linda took it in turns to stay the night, with permission from the hospital staff. My sister and her Husband returned from Germany, and over the ten days Mum was in hospital, we all visited, along with other family members, and Mum’s friends, to keep Mum company.
Mum was able to leave hospital after 10 days and we all enjoyed a family meal together to welcome her home, before my sister and her Husband returned to Germany.
A few days later I remember Dad saying that Mum needed some more support as she was in so much pain, so he contacted Arthur Rank Hospice. Dad was concerned about calling on a weekend. I encouraged Dad to phone and said that there was bound to be someone available to help. Dad was able to speak to someone and on the Monday, Mum was admitted to the Hospice.
One of Mum’s friends who, had passed away just before Mum was diagnosed, spent some time at the Hospice, and as I hadn’t been involved with a Hospice before, naturally I did think of it as a morbid place, and think the worst. I remember Mum being admitted with my Dad and Auntie Linda at her side. They said Mum had a few tears at the thought of going there and my heart sank, suddenly reality started to sink in.
I decided to head over to the Hospice after I finished work that evening and Mum was so surprised to see me as it was almost 8pm. In hospital she hadn’t been able to have visitors at this time of the evening, or have us come and go in the way we could here. It was so different to hospital. I was helping Mum get her pillows comfortable, as she needed them a certain way, when a male nurse popped his head round the door. He said if you need them moving in the night, just press the buzzer and they will come! I couldn’t believe it. And I knew that he truly meant it. He asked if there was anything he could do and reminded Mum that if she needed anything at all, just to ring the bell. In hospital we barely saw a member of staff if we rang the bell and we found this different style of care hugely comforting for us all. We spent many evenings watching the TV after I helped Mum get ready for bed, and Mum would keep saying ‘you must get going it’s late’, but we could stay right in to the night if we wanted to.
Although in discomfort and only able to lay on one side, with the use of a syringe driver, this was the first time Mum became pain free. Mum would often try and send me over to Sainsbury’s to get things for other patients, as she was always concerning herself with how everyone else was, more than herself. She’d tell me off for drinking lots of tea and eating biscuits from the visitor’s kitchen, but all of this just helped to make the experience more relaxed. Things were kept as normal as they could be in the situation. It became quite a pattern, Dad and Linda would visit in the afternoon, Mum would then have a few hours to herself before I arrived. Some days Mum had as many as eight visitors and this was again so different to what we experienced at the hospital. Some days Dad would go twice.
One day, I asked if dogs were welcome at the Hospice and I was surprised to learn, the answer was yes! I asked what parts of the Hospice I could take my dog Harry to, expecting that it would be limited to the garden but I was delighted to learn that Harry could come into Mum’s room and on a number of occasions; he even sat on Mum’s bed. Mum enjoyed seeing Harry and it made visiting even easier for me. I hated the thought of leaving Harry at home or having to rush home and cut my visit to Mum short. Mum would also worry if she thought he had been left home alone too long and want me to get back.
She kept dog biscuits in her bedside cupboard and during his visits he would be spoilt by staff and other visitors alike. Harry was also suffering with cancer and Mum spent a lot of time checking how Harry’s treatments and scans had gone. She was as worried about him as we were about her, and I think it was a comfort that she had another family member going through similar things to her, even if he is a dog!
Occasionally I bought in a laptop and using the free wi-fi (something else I was surprised to discover) we would Skype my sister, Katie. She lives in Germany, and wasn’t here when Mum first went into the hospice, so I would set it up and then Mum and Katie could chat away whilst I went and made a cup of tea. It was important my sister had this time with Mum too.
When Mum had been admitted, she had been asked about her lifestyle, her medical history and her dietary needs. Mum was able to bring in her own Reiki therapist, Phil, and her supplements she had been taking. The Hospice also arranged for Mum to have her nails painted and have a session of aromatherapy which she really enjoyed. One afternoon Mum and Dad were even invited down to Day Therapy. I came in that afternoon, and Mum and Dad were talking about seeing Meerkats, Owls and tarantulas. I remember thinking, what a strange thing to do, but they’d had a great day. Mum continued to say it was a wildlife experience organised by the Hospice team and Dad was down there the majority of the afternoon. It was great to see how the Hospice did things not just for the patient but for the whole family. It created so much conversation and it was so lovely to hear.
As a family, we felt less pressure whilst Mum was at the Hospice, someone was always able to help and we had support from all of the team. During this time we talked with Mum about returning home and planning for the future. Mum didn’t like answering the end of life questions, and it was the first time I thought she had seemed really depressed. It affected her for days, and I felt so sad as I didn’t know how to make her feel better. Mum said that she thought she would return to the Hospice when the time came. When we spoke some more, I realised that whilst she wanted to go home, she was worried about us all, in particular my Dad, and how we would cope if we were to care for her. Typically Mum was protecting us in the same way she had chosen to protect me on my birthday. It was so important that she was in the place where she wanted to be, and with this we started planning for Mum to return home.
Mum was adamant that she and Dad would go back to the Isle of Wight, the holiday spot that had become a favourite with them both. Dad didn’t tell us at the time, but Mum had around two weeks before her health would further decline so with the help of the hotel staff, he made sure they got there. In the Isle of Wight Mum needed a wheelchair, but she had been determined to go and they had a nice time there with my Auntie and Uncle too.
When Mum arrived home her legs began to get weaker, and eventually she found the stairs nearly impossible. I felt determined that she should be able to sleep in her bedroom, but after a few days Mum surprised me by saying that she didn’t want to do the stairs and she slept well on the sofa that evening. My sister had returned from Germany and we were all around to help out Dad, and support Mum. By the Wednesday of that week, a special hospital bed had been arranged, this arrived and we set up the dining room as Mum’s bedroom and sometimes she would move in to the living room to watch TV. We also had a small table and chairs so she could still eat up a table with Dad when she wanted to. We all tried to keep things as normal as we could.
On the Thursday Mum had quite a good day. She ate a small lunch and even a small dinner. We sat together in the living room, I read the newspaper with her and we had a reasonably normal day.
On Friday, Mum started to become less responsive. We contacted the District Nurses and they called in to see how she was doing. Dad was worried about Mum and asked if she should be moved to the Hospice. We knew Mum wanted to be at home, but Dad was worried how he would care for her. The District Nurses said the journey would now be too stressful for her, given the development of her condition. We would continue to care for her at home and all support each other. Mum was barely awake, but we knew she was listening as when we would say something we could hear her gentle reaction. There was always someone with her, and even if we were in the next room, I think she liked us all being around. Even Harry had visited that day too, along with my partner, Lee.
Saturday arrived, Mum’s best friend, Rita, came to be with her, and her cousins Elizabeth and Margaret came to visit too. They all got to spend some time on their own with Mum, and we had a really nice day talking about old times, drinking tea and eating cake. I joked to Mum that I always get the best china out when her cousins come! Once they left, myself, Dad and Katie took it in turns to sit with Mum and we agreed we would share this for as long as we needed, day and night, expecting this could be for some days.
Later that evening, my sister Katie was sitting with Mum when she suddenly called me in. I called to Dad and we were all by Mum’s side when she took her last breaths. It was the 5 September 2015 and nearly two years to the day since her diagnosis. There was no panic, it was all very calm, unbelievably calm in fact. Everything had gone as well as it could do given the situation, and I was pleased we were all there for her as a family. I feel proud we were able to be with her at the end of her life, when she had been there for us throughout the whole of ours.
Previously to our experience I thought of the Hospice just being about the end of life, and being very depressing. I imagined everyone would be lying in their beds dying, but for Mum and our family this wasn’t how it was at all. Mum was treated like a person, not a cancer patient, and this meant so much. The Hospice is so different to how you might expect. It felt very homely and you can happily walk through the doors, dog by your side, at any time of day. People really don’t need to be worried about going at all. I wish we had all known this before.
As we approach the anniversary of Mum’s death, the Hospice surprised me again. Dad received a note from the Hospice recognising this and inviting Dad to receive more support or pop in for a cup of tea. This is really special as whilst Mum didn’t pass away at the Hospice, we are grateful that they remember the significance of the 5 September for our family. They really do care, and do more than just a job.
My Mum and Dad had been together for 50 years and Mum was just 66 when she passed away.
In March 2017 Sally kindly spoke to Leigh Chambers from Cambridge 105 for a piece which was broadcast on Matt Webb’s Afternoon Show. She talked about how hugely her view of hospice care changed, having come into direct contact with the Arthur Rank Hospice for Rosemary’s care.