David’s wife, Linda, was diagnosed with breast cancer 16 years ago. She underwent radiotherapy and was in remission for seven years. But in 2007 the cancer returned, this time in her other breast. Doctors targeted the tumour with a combination of radiotherapy, chemotherapy and cancer drugs. Although Linda lived with some side effects from her medication, the treatment kept the cancer at bay for a further seven years. Sadly, in 2013, Linda’s condition deteriorated. David explains how the Rennie Grove Hospice at Home nurses were indispensable during her final months…
“Linda was an amazing woman, always putting others before herself. Even to her dying day she was thinking about others. She was a person who cared for people, who laughed at everything and who made friends instantly. Wherever we were in the world, if she came across a homeless person, she would make sure she got hold of food and water for them. Even when we were going to the Doctor’s about the fluid on her lungs, she would stop and talk to Maria, the Big Issue seller who was frequently stationed outside the surgery.
“She was a profound Christian and she had no fear of dying. I think this threw some of the people involved in her care, who had perhaps never seen someone face death with such equanimity. I recall a number of occasions when the medical teams were concerned she hadn’t accepted what was going to happen. Linda understood exactly what was going to happen but her lack of fear of dying regularly confused those around her, including me at times. Although Linda found it hard on one level to relinquish control as her pain relief had to be gradually increased to manage her symptoms, her faith meant she wasn’t afraid. She never cried, never complained, never said ‘why me?’ She approached her illness with the same laid-back, relaxed attitude she always had. Her first job was as a nurse in a children’s home in Glasgow, where many of the residents were disabled and some had terminal conditions. The experience touched her deeply and, combined with her strong faith, informed her unique perspective on life and death.
“In the summer of 2013, Linda started feeling unwell. Scans showed a build-up of fluid on her lungs and although this symptom could be treated, there was obviously an underlying problem. I remember I was driving on the M4 on a Thursday afternoon when I took the call from the surgeon at the hospital. He didn’t give any details over the phone but arranged an appointment for the following day. It was then they told us that the cancer had spread to her lungs and liver. No-one used the word ‘terminal’ but I think at that point we both knew what this prognosis meant. I was white and shaking; I just about passed out – but Linda, being Linda, took it all in calmly. Linda told me I would be fine and smiled as always.
“My nerves were already pretty frayed by this point. Whilst we were fortunate to have private healthcare, emergencies were dealt with by the NHS. Four times Linda was rushed to hospital when the fluid build-up in her lungs became critical, once on Christmas day.
"The NHS did an amazing job looking after Linda; however, we were beginning to realise that we had a complex management situation on our hands. Coordinating the efforts of the private sector, the NHS and the General Practice doctors had become an issue. For example, Linda’s records, including MRI scans, were now located within separate organisations, which was an issue I struggled to resolve. No one was at fault, however, it is an issue to seriously consider for anyone involved with this situation.
“Perhaps deep down we had suspected and feared what the underlying issue would prove to be, but it wasn’t until that Friday at the hospital that we knew.
“We had just had the worst news imaginable – but in fact this is the point at which everything changed and improved. We were referred to Rennie Grove Hospice Care and these amazing nurses came in, grabbed hold of this thing and transformed the whole situation. From utter confusion – me feeling all at sea – we suddenly had structure and a plan, and someone to liaise with all the strands of healthcare provision we’d been struggling to keep hold of. Someone who could walk into our GP surgery and the doctors would stop and listen.
“The Rennie Grove nurses would sit me down and talk to me – candidly and sensitively – about what was going to happen. They explained what I already knew but still struggled to accept: that Linda was going to die. I would often break down crying when we talked about it. But what they said to me helped me cope: ‘focus on what can be done and ignore what can’t be changed’, they used to say. This may seem intuitive but in the moment – when your loved one is dying and you feel the full weight of responsibility and loss bearing down on you – you need someone to remind you. What the Rennie Grove nurses were saying was that Linda dying was a tragic inevitability – but that it was within our power to make her death the best it could possibly be.
“I set about preparing the house so she could die at home, which was what we both wanted. The nurses also advised me to think about the future: consider Wills, any paperwork in Linda’s name, the logistics of her funeral. I felt terrible planning all this while she was still with us, but on reflection it was the right thing to do. She wanted to be buried in Scotland, where we both originate from, and this required a certain amount of planning ahead.
“The Rennie Grove nurses display an extraordinary combination of emotional intelligence, organisational skills and specialist knowledge. They visited us daily, administering oral morphine initially and later setting up a syringe driver. And whenever I rang, I was put through to someone who knew what they were talking about and a nurse would be with us within 20 minutes to half an hour. If it hadn’t been for them coming to the house, I couldn’t have coped.
“I was holding Linda’s hand when she died. One of the Rennie Grove nurses was with us and her being there was a gift in itself; without her there I would probably have been in utter panic.
“Linda was always at the centre of their care, but with the Rennie Grove nurses, I was treated equally. Unlike all the other healthcare providers who helped us, who rightly focused on Linda, they took the time to support me too. Their reasoning is that a carer who is coping can make the difference between a patient being able to stay at home and having to go into hospital. And all the time they were helping to prepare me for life after Linda – unthinkable at the time, but something I had to deal with.
“It was the most difficult and terrible period of my life, but also in many ways the most uplifting. I saw amazing people at work and the simple fact of people helping others at the most vulnerable point in their lives gave me faith in humanity. To anyone going through this, I would say listen to the nurses’ advice: it is priceless.”