I don’t often do this but I’m going to write about something unrelated to motorhome travel. Writing this blog has been a huge part of our travels in the motorhome over the last few years and now that we can’t travel because of Covid it has become a source of comfort for us as we look back at our own travels and enjoy remembering all the new experiences we shared with all the laughter and challenges too.
In our last post we talked about our trip to Arisaig where we shared a lovely, energetic happy holiday in the sunshine. Immediately on our return Shirley and I were suddenly grounded for a reason unrelated to the Covid crisis. After a lot of thought I decided to break my own self imposed rule of not writing about personal stuff and describe what has happened.
We got back from Arisaig in one piece and unpacked the van. I was aware that I didn’t feel well, almost as though I had eaten too much and felt a dull ache in my side. Two days later I was being seen at the GP surgery and told that I had a problem with my gut. Three days after that I was back again and being given antibiotics first for a gut infection and later for a kidney infection. After a miserable weekend of worsening pain I was rushed to hospital in agony and given morphine followed by two CT scans. Less than an hour later a young junior doctor told us the news – they had found a tumour in my kidney.
Words cannot describe that moment when she blurted it out, blushing furiously, before escaping from the room as fast as she could. Our world literally stood still. We had no idea what this could possibly mean, and worse still, they told us that I would be taken to the ward but Shirley couldn’t come with me and had to go home alone.
Later that day a more senior doctor came to see me to deliver the news – not knowing that the young doctor in A&E had already delivered it. Fortunately this time I could ask questions and was told that the treatment was a radical nephrectomy – the offending kidney would be taken out. He was kind and reassuring, telling me that I would be absolutely fine and that after the operation I would be soon back to normal. We can live easily with only one kidney. Less cheering was the news that the operation wouldn’t be for a few weeks and that I would have to go to one of the big Edinburgh hospitals as it’s a major operation performed robotically (yes I’ve been operated on by a robot!). My stay in the local hospital was to control the pain so that I could survive the wait. The Borders General Hospital is a short distance from our home and Shirley was able to book one visit a day for half an hour, due to the Covid restrictions. The shock and the sudden enforced separation was much harder on her than on me, mostly because I was by then floating on a cloud of opiate drugs. Chris, youngest son dropped everything at that point and came down to stay with her to form a support bubble. He continued to work from our dining table and, in between calls and online meetings, gave her hugs, mugs of tea and good food. “Support bubble”, a term entirely new to us until 2020, is a wonderful thing when your legs are knocked from under you.
A few days later I was at home, battling pain, side effects from the medication and strange waves of sweating where water poured from my head and down into my ears and neck. It was weeks before I discovered that this is a symptom of cancer. Who knew?
On October 8th I was admitted to the Western General Hospital and had the long awaited radical nephrectomy by keyhole robotic surgery. I went in optimistic that I would be home in three days and on the road to recovery. The only person who was honest about what I could really expect was the theatre sister who prepped me for surgery. She said, “You’re going to wake up feeling as though you’ve been hit by a bus” – she was right.
I was in hospital for a week, had postoperative complications, reactions to the pain relief and also experienced the reality of a NHS that was, even then, under pressure. Not enough staff, lots of people having to stay home and self isolate and obvious exhaustion. One notable moment was when I was wheeled from the ward in my bed to get another CT scan. The porter who took me down looked tired. I asked him how he was and he told me that they were working at half capacity because one porter had caught the virus and, naturally, not knowing he was infectious, had come to work. A lot of their work is done in pairs so all those who had been in contact with him in the couple of days before he realised he was ill had to self isolate. As he wheeled me along he started to talk about social and societal issues, citing references to the things he had read. I used to teach psychology and sociology and straight away I recognised the tell tale sign of a very intelligent man with a real passion for the subject. I asked him if he had considered going to college as a mature student but he laughed, “I have a family to support” he said “and anyway, this is a job where I meet all kinds of people and I can chat to them and help them too.” When he left I thanked him and he thanked me too … “Great chat!”, he said and went on his way with a bit of a spring in his step.
It’s been three months now since the operation. Recovery has been slow and it’s hard not to feel disappointed by the fact that I can’t run around doing stuff all day as I did before. The sofa is where you can find me for a good chunk of every day, although I do walk the dogs now and sometimes go for a second walk with Shirley to try to build up stamina. Shirley has worked really hard, nursing me back to health, keeping the house in good order and cooking great meals for me. I was pretty skinny when I got back from hospital but her good food and the ravenous appetite that returned about four weeks after the operation has deposited some of those pounds back on.
Probably the hardest thing for us to cope with has been the news that the cancer they removed was an aggressive type and I have a 40 – 50% chance of it returning somewhere else. Receiving that news was a real blow and it took us both a couple of weeks to start rationalising it. I will be scanned every six months to check for any sign of a recurrence and I am told that they can see the tiniest speck and treat it quickly if it does return. In the meantime all we can do is live life to the full – even if that currently means living it at home while we wait for the vaccine to set us all free again.
The Good Bits
Even when life deals you a smack in the sore bits there can be many blessings to be found. I know this sounds a bit trite but I feel qualified to say it now, after facing my own mortality and lying whimpering in a hospital bed like an upturned tortoise, helpless and miserable.
The following does not come in order of importance to us – I’m just writing it as it comes to mind.
Regular readers of this blog will know that we’ve made some very fine friends on our travels. When news of my illness got to them they responded with love, encouragement, cards, gifts and reminders of the good times when we sat in the sun drinking cold beer and laughing. They not only gave us reminders of happy times but a very important reason to get through this. There is a lot of life to be lived and we intend to live it.
We live in an apartment. It’s a place we chose when we downsized because we love Melrose and we wanted a safe place to live and also lock up and leave when we went on our travels. It wasn’t long before we discovered that we had moved into a warm and friendly community and we knew we’d made the right decision. Within hours of the first whisper of my illness getting out to our neighbours we were overwhelmed with the full extent of the value of this lovely place. We were showered in flowers, cards, offers of help and gentle emotional support. For a while we were borrowing vases from neighbours and sitting amidst beautiful bouquets and cards on every surface. Tucked up in my corner of the sofa I needed only to look around me to know that we were surrounded by love and concern. One lady came to the door and said she had been through something similar a few years ago, offering a listening ear and, over the following few weeks, practical assistance for things she knew would help. Licorice for constipation … who knew? She did and I cannot thank her enough. Close neighbours shopped for us, walked the dogs, cooked and baked and quite simply surrounded us with care. We learned a lot from this – not just that we’re safe and well loved here but also that it’s important to say “yes please” and “thank you” just like our mothers taught us. Growing up can make us resistant to accepting help. This lesson has taught me to accept it gratefully and offer it liberally.
Our family and friends were quick to offer love and support and we felt the warmth of their concern and the knowledge that they were there for us every step of the way. So many kindnesses were offered it is impossible to list them all but special mention goes to our friends who took our two dogs in for almost two weeks when I was in hospital and just home. They sent us daily pup dates and we could relax knowing the pooches were in good hands. This was a huge gift. It isn’t easy caring for someone else’s dogs, especially when one of them is a neurotic elderly poodle on medication three times a day. Our sons and daughters in law in Edinburgh drove Shirley around, took her for food and comfort and were on hand for any practical help when I was in hospital. Without them she would have been lost (literally) – her ability to find her way around the city is seriously lacking. Family and friends at a distance wrote letters, sent cards and phoned keeping the flow of concern and comfort flowing. Even the fact that we had to ask people to phone less often when Shirley was exhausted and I was at my lowest ebb in hospital was met with understanding and kindness. When we tell people we’re thinking about them, either in words or by sending notes or phoning it means a huge amount. I used to feel helpless when someone I cared about was going through something awful and saying ‘I’m thinking about you’ didn’t feel like enough. Trust me, it means an enormous amount to know that there are people holding on to the light for you when you can’t see it yourself.
Thank you to everyone who has helped and supported us, you know who you are and you’ve got us through this.
Finally I want to say something about the Macmillan Cancer charity. I was both amazed and perhaps a little shocked when I received a letter from them enclosing a checklist asking me what my concerns were and how they could help me. At that moment I hadn’t quite added myself to the category of cancer owner and it took me a minute or two to read it and take it in. A few days later one of their workers called me and gently asked me how I was doing. I found myself telling her my worries and talking about an annoying swelling left over from the surgery. The next day she called me back to say that their physiotherapist would like to offer to teach us both how to do lymphatic drainage massage which is used to help move lymphatic fluid away from the region where the lymph nodes have been removed. We were given an appointment for two days’ time and turned up to be met by Ruth in full PPE who explained the whole process, demonstrated it on me and showed Shirley how to do it. She was kind and humorous, apologising for the fact that she wouldn’t normally do this wearing gloves and laughing with me when I giggled uncontrollably because it tickled. We left feeling encouraged and not so scared of the C word. Since then I’ve been sent leaflets, contacts for medical or emotional help and a whole lot of warmth. So, if you feel you can, I would be grateful if you could send this wonderful charity a few pennies or pounds. They bridge the gap between the overstretched NHS and the full extent of the support people with cancer need, when things are at their most challenging.
I never imagined that this would be me. This illness seems remote until it comes to visit and it can come with a speed and a stealth that takes our breath away.
Just one more thing – if you get a strange sensation in your body that you can’t explain and doesn’t go away, go and tell your GP. I hadn’t been able to lie comfortably on my left side in bed for about two years. It’s too late for ‘if onlys’ and even now I don’t know how I would have persuaded a GP to act on a strange sensation but if it ever happened again I would try my damnedest to get listened to and get a scan. A CT scan is expensive but it’s fast, comfortable and it reveals all kinds of things that can’t be seen any other way. I didn’t go to the doctor because I was afraid he or she would think I was being silly. I’m prepared to be silly now.
Here’s to a happy, fit and healthy 2021. Please go and do the things you’ve always wanted to, as long as they’re safe and legal. Don’t wait. Live now.