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26th July 2018

Making choices and memories

Neil Stewart and Pete Buchanan met 47 years ago at a dinner party in Johannesburg, South Africa. They fell in love straight away and their relationship only strengthened over time as they faced financial hardship, unemployment and homophobia. Neil and Pete followed their dream by moving to England, eventually settling in Holland-on-Sea. When Neil became ill, he was philosophical about it, recording his decisions about his care and end of life choices, and discussing the future with his husband. Pete shares their story…


I walked into the flat and I was introduced to Neil and oh my goodness, I just knew I wanted to spend the rest of my life with him. I was 22 when I met him. Nothing could separate us, nothing. There was no Neil or Pete, it was Neil and Pete. 

When Neil was 17 or 18 he hitchhiked from Rhodesia (now called Zimbabwe) to England. He found a job and he fell in love with England. We'd been together maybe a month or two and were just chatting; you know when you're newly in love and everything is going hunky dory, you chat. And he said to me ‘I want to die in England.’ He got his wish. We came over 14 years ago and I must say it's the most beautiful country. We love it, I love it, Neil loved it.

Neil was a very kind, well spoken, extremely well educated gentleman. He was the most loving adoring person one could ever wish to find. He never found fault with people. He never used bad language, people would ask 'don't you swear?' And he would say ‘no, I'll leave that to Pete, he does enough for both of us!’

He loved all the old films, he adored royalty. He taught me to love opera. When we first met 47 years ago he was crazy about an opera singer, and I can't tell you how much I didn't like opera. After about six months of us being together, I decided to listen to one of her operas and by the end of it I'd fallen in love with this lady, and I was allowed to take over the role of being her cheerleader. He taught me so much. We’d found something he liked and I liked and we could now grow it.  

The unhappiest day of my life

If somebody could have said to me when this initial diagnosis was made, Neil’s going to be in The Hospice for the last three weeks of his life and he will pass away so peacefully, and allay all my worries about his last breath, my journey would have been easier.

But as soon as we got the diagnosis, I started grieving and had a pain inside me. That day has got to be the unhappiest day of my life. It would have been lovely if somebody could have looked into a crystal ball and said what was going to happen. When you’ve got something like lung cancer, you go online and you read all these things; oh my goodness, is Neil going to have this, is Neil going to have that? It would have been lovely to have been guided but mea culpa, I didn’t ask for guidance.

For me, it was the worst experience possible. I had no control, I couldn’t make him better. I said if they could just take that bloody lung out of you, take one of mine, give you mine, I’ll have the cancer because I will fight it and be fine. Many times he said ‘I don’t want to live any longer.’ I didn’t want to see him suffer and I knew I was going to have to watch it.

Neil and Pete

For him, of course it was difficult. What he must have felt like, goodness knows. He never complained. I said to him your heart might stop beating in your body but it’s going to continue to beat in mine. My life is rich with incredible friends who look after me because Neil spoke to them and asked them to look after me. That’s what makes me cry, the bravery that he displayed.

Soothing ear balm for tired and sore ears

I’d become his carer because he had COPD and, poor Neil, every time somebody had a sniffy nose he’d have this dreadful bronchitis. Gosh he suffered. It was incredibly stressful especially if he did pick up something. When you are in love with somebody you don’t think you are doing something amazing, because Neil would have done it for me in a heartbeat had the tables been reversed. He really was a concerned partner. I could only protect him for so long. And cancer got him in the end.

The first phone call I made to St Helena’s SinglePoint, I was a mess. I was through and speaking to someone straight away. It was like soothing ear balm to someone with tired and sore ears! Every time I phoned SinglePoint, they made me feel like they were waiting for my phone call and I’d made their day by calling. Very few places make you feel they are so glad you phoned.

The Occupational Therapist had been to our home to arrange a bed. An assessment one Saturday and by Monday afternoon they were here fitting handrails. The following day a gentleman arrived with a bed raiser. Everyone in the Occupational Therapy and Physiotherapy departments was outstanding. They would come in and have a little chat. We were spoken to as a couple and I think that gave Neil great comfort, because Neil’s partner was also of great concern.

Boulders were lifted from my pockets

The first impression when we walked in The Hospice was one of such relaxation. I was expecting great tension, a lot of angst and distress, but none of those appeared at all. The ladies at reception were absolutely adorable, all of them. I suddenly felt these boulders being lifted from my pockets and being replaced with stones. It was just so loving, so kind.

Neil was shown to his bed and it wasn't long before a lovely nurse and a doctor came in to see us. My goodness me, they put you at such great ease, asked all the right questions and didn't mind you talking about yourself. I think they realised what kind of relationship Neil and I had; there was no shock, horror.

I cannot praise them enough because while they were busy talking, they were removing the stones now and replacing the stones with little pebbles.  

I thought I can be me again rather than a carer. Caring for Neil, I couldn't control his pain, and he was in very deep distress because he was a very proud man and ugly things had happened.

It was just such a relief, a wave of relief that I got from St Helena.

Neil took his camera with him and he loved taking pictures of all the flowers in the garden. I don’t know much about selfies but I said shall we try a selfie? We went and sat on a bench in the garden and took a whole lot of selfies, a whole lot of memories.

Darling, we all have to die sometime

When he was ill to start with, I couldn't accept it. I just said no, they’ve got it wrong, there must be something they can do for Neil. When I finally kind of accepted that this was the end, on our anniversary we went and had supper at a restaurant, not knowing it would be our last supper. When we got home I said to Neil, I'm never going to be able to spend another hour with you, do you mind if I just turn on the iPad and video you and record the conversation, and may I do it as often as I want? I just want to be able to see you and hear me talking with you and interacting with you.

Neil and Pete

Making choices

We were able to talk openly about his death. It was very difficult.

Neil had put an Advance Care Plan in place while he was perfectly healthy; all the things he wanted, his preferred priorities of care. And he’d spoken to our St Helena community nurse about the My Care Choices Register.

All of that was in place. It made it a bit easier because those difficult conversations had already been had when he was well enough to talk about it. Our nurse helped us fill in the form; I was in shock when she was calling out all these things, thinking my goodness, this really is something serious.

When he got the diagnosis of a tumour I just held him in my arms and said I’m so sorry. He said ‘darling we all have to die sometime, this is my time.’ He didn’t want any more investigations. When he was told the cancer had metastasised, he said he didn’t want any life lengthening treatment at all. If I can get 1% of his courage I would be happy.

All these lovely little things

Everybody I have met is an asset to St Helena. The girls in the kitchen! Neil said he’d like a bacon sandwich and he said ‘I know you’ve put everything away but please could I have a bacon sandwich?’ Yes, don’t worry I’ll bring it to you, was the response. Gin and tonic? It was there.

The doctors never did anything without being so thorough and always they ended with ‘do you have any questions?’ I think Neil had realised which stage he’d reached now and he said ‘I don’t have any questions but I do want to thank every single one of you for all the loving care and all the attention you have given me, I really appreciate it so much.’ He didn’t want to say am I going to die peacefully? Am I going to be in pain? There was none of that.

Pete and Neil

I went to the hospice every single day. I got in one morning and a lovely lady said she had me booked for a neck massage and some aromatherapy. I think you’ve made a mistake honey, I’m not the patient. ‘Oh no no no, it’s for you,’ she said.

Do you know the care the relatives receive at St Helena is just beyond description?

They didn’t have to worry about me, but do you know how much I appreciated it? She gave me this neck massage and I actually fell asleep. And they did Neil’s feet and I watched them doing Neil’s feet thinking what wonderful people you are. You’re taking his mind off the inevitable. And Neil loved having his feet tickled or massaged. All these lovely little things. 

Hard to voice my feelings in front of strangers

The kindness they showed! I felt very inhibited trying to tell Neil how much I loved him and thanking him for our 47 years, in front of three other gentlemen on the bay. I am homosexual and it was extremely hard for me to voice my feelings for Neil in front of strangers. I had a problem because I will always feel inhibited because I’ve grown up in an environment where my lifestyle has been frowned upon. I just didn’t want to talk so intimately in front of anybody else.

I did voice my concern that I was finding it so hard and I wanted to say so much to him - not that I hadn’t said it already, but right then it was more important he knew how I felt. And they were so sweet and immediately accommodated me. Let’s see what we can do, was the response - and they did it. They wheeled us into another room and when he woke up I said, I can sleep here with you, we can have our friends here, we have this whole big room all to ourselves. 

To Pete

After he died I went onto his computer because I wanted to find his 60th birthday video so I could watch it and have another hour or so with him. I entered ‘Neil or Pete’ into the search bar and I found the video, but there were other documents there and one said To Pete. He had left me a goodbye greeting. He thanked me for all the years we've been together, and it's the most beautiful farewell note. Something I shall treasure for all my life. And to me, just showed Neil right up to the end, always thinking about others, never thinking about himself.

We really were so lucky. As much as I hated going through what we went through I really wouldn’t trade it for one moment with waking up and finding Neil dead. We’d said everything we could possibly think of and went through our memories together and made more. 

This story may not be published elsewhere without express permission from St Helena Hospice.

 

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