The first school carol service of the year

Tonight was the first school carol service of the year, at our sons school. He stayed in and was fed there, while my wife and I were to go for hopefully mince pies and then the service in the chapel.

It had been a stressful day before then. My daughter was having an interview to try and go to Cambridge Uni, her big ambition being to study engineering (Yay, go girl!). But the first session was quite tough and led to tears. Thankfully the second one was better, but we wont find out until January.

My wife had been home with her as she dialled in remotely, and as it was a cold day had made a spaghetti bolognese, a family favourite. We sat down with plenty of time to go. However standing up cooking takes alot of energy from my wife, and the smells and sight of the food means she often does not eat.

Well unfortunately today, it was worse than that. Her meal bounced, very rapidly. She looked awful, ashen faced when she finally came out from the bathroom. Sadly this has happened so often that the children know that we just have to wait for her to come back rather than going to try and help.

This was ten minutes before we were supposed to leave for the mince pies and carols. We were already cutting it fine, as we knew she wouldnt be able to stand and then sit on probably uncomfortable chairs for an hour or more, but now the pressure was really on.

And this is where another unfair aspect for my wife comes along. She wants, nay should go to things, and why should she be excluded? But the world doesnt make it easy. Ideally she needs us to park in a disabled bay close to where we are going, however by deciding that she cant spend too long at things, these spaces will probably have gone. So we have to either go earlier, or walk further, both of which will make things worse for her.

Her eyesight is bad, and she stuggles with lots of people around, and so again going late to events means that the ideal seat for her to sit at will be gone – prime viewing space doesnt always get held. We dont like to make a big fuss, especially at school events, for fear of embarrassing the kids, and so dont ask for seats to be saved.

Luckily tonight, despite the traffic and the tea not staying down, we made the carol service, and she managed to join in with the hymns. It was a lovely way to kick start the Christmas period.


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We went to see the Christmas lights of old London town

My wife made the suggestion yesterday to go into London and see the Christmas lights. With her blue badge, we get free parking at the station, and a discount on a family ticket, which made the trip a little more affordable.

When we got there, the decision didnt seem the smartest one. We knew there was a march for Palestine going on, and it was the day after Black Friday, but we really under-estimated the crowds. It was rammed. We got off the train at Charing Cross, and found the Strand closed to traffic. Despite the march not heading that way, the amount of people was quite something. My photo doesnt do it justice.

My son gets quite anxious around crowds, so this wasnt getting off to a good start. The other impact was that we could not get a taxi for love or money. No cars, no cabs, nothing. And the plan had been to get a taxi to take us to some of the hotspots, and save my wife from walking.

So we had to walk, through Leicester Square, along Regent Street and to Carnaby Street. We had to take frequent breaks, but even so I could see my wife becoming more and more laboured, head down, face drawn, colour draining fast. This was not what we had planned. A stop in a coffee shop for a restorative latte helped her, and we got along Regent Street, seeing the amazing angel decorations, then into Carnaby, where the theme was the universe.

You can see the people we were dealing with here. It was hard with working eye sight and hearing, but my wife was really finding it hard. Since her stroke she doesnt see anything down her left side, and when people are pushing into small gaps, and running along quickly, she wont see and was banged into a few times.

Oxford Street was worse (no photo I was worried about getting my phone out too often). It was like shoulder to shoulder along this road, and now I was getting worried about the trip and the crowds. I couldnt keep an eye on both children, and guide my wife along and watch where we were trying to go, and keep an eye out for any dodgy looking folk. It was very stressful.

We ended in China Town, a tradition for us at this time of year. And there were queues to get into every restaurant, even at 5 .30. My wife was desperate to sit down, and so we ploughed on to the end of the road, eventually finding a small place with only a five minute wait. The food was amazing, but we here saw the other problem of being out with someone disabled.

The tables were close together which I could see was making my wife worried as she is still scared of Covid. But also the toilet was down a steep stair case. Not ideal for someone who has eating problems, and can be ill at a moments notice. You realise that even while doing something nice, there is never a rest.

We did eventually find a taxi, and managed to get back to our train, my wife being guided more than walking her self. It was freezing when we got home, so I lit the fire and settled my wife in bed, helping her to pull her leggings over her seriously swollen ankles. She managed to get into bed with a hot water bottle and a warm drink to try and bring her back to temperature. Hopefully the long term impact wont be too bad.

So why do these things? We try to maintain as normal a life for our children as we can. We have always strived to make their lives fun.

But also why should my wife miss out? Why should she stay at home and not see the lights, not enjoy a trip out? She is disabled not someone to be thrown onto the scrap heap and left in the house to be forgotten about. The memories of our trip yesterday will last for a long time, and will act to block out the sad memories we all have.

Yes, it was frustrating at times, but the frustration is at the situation, the inequality for disabled people, and at my wifes illness, not at her. I am amazed and proud at how she managed to cope with it all. She has always been determined (we call it her water ski face from when she tried water skiing on our honeymoon and was determined not to fall off), and that determination has been evident throughout her illness. She battles through everything, long term incapacity, comas, 12 hour ops, and to be able to still walk through a heavingly busy central London is an inspiration to us all.

We are attempting something similar today, visiting RHS Wisley to see their lights. Some more of the determination will be evident I’m sure.


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How can we make happy memories?

With Christmas rapidly approaching, thoughts inevitably turn to the memories we make. Particularly in our situation this can be a priority.

Unfortunately, the reality of terminal cancer is that I feel we never know when my wifes health may take a sudden turn for the worst. It has happened before, when on the eve of a family holiday she was admitted to hospital with suspected pneumonia, only to end up in a coma for a week or so.

I have started to notice my wife trying to do more for the children. Booking trips, and arranging experiences. Meeting with friends and family. These are what I would call the big extravagant gestures.

However, looking back on my childhood, the memories I have are different. The holidays away are seen fondly, as are birthdays and Christmas, though to be honest I struggle to distinguish years. No, the memories that are most vivid are the smaller things.

I can smell walking into the house at lunchtime when I was at primary school. I lived three doors away, and so came home to the sound of Gloria Hunniford on the radio, and often fired eggs and ham on the table.

I can smell the beef soup and pancakes my Grandma would make for lunch when we stayed. I can still see the pile on each plate, and the way my Grandad would sugar and squeeze orange juice on each one.

I can remember the beep of my Grandads car as they pulled onto the drive. The blue Beetle I later owned. I can also remember playing in the school he was caretaker at. My Grandmas voice, and the feel of the trim around the bottom of the fancy sofa in the room we never went in.

I remember playing in the back garden with friends in the endless summers. I could probably still get a decent score playing Elite on a BBC B computer.

But I also remember vividly the time my mother was invalided with a bad back, laying in bed for days on end. The worry and extra stress that caused on my father.

I remember trips to hospital to visit my Grandad, and seeing him deteriorate in a home. I can smell the hospital smell, and can still see how his hands shook, how his skin grew paler, and less alive. I can see the thinning hair, and weight loss.

And this is what I worry will be my childrens memories of their mother when they were growing up. Seeing her lying on the sofa asleep because she has lost her strength. Sitting at the dinner table with her head in her hands, struggling to finish her meal. Seeing her shivering in the cold, unable to walk far. Lying in bed, weakly interacting with them. Holding her stomach because it hurts.

The big events, the fancy trips look great on camera and social media. But it is the small things that will be remembered.

Childhood trauma can be a big cause of mental health issues later in life. There are real linkages between what you experience in your formative years, and how you are as a person in your adult life. (A great article is here

Anxiety can already be seen in my children. My 11 year old son has separation issues, and struggles to be away from my wife over night. This has been exacerbated by a recent break in at a friends house.

My older daughter can be very quiet. Some would say she is a typical teenager, but part of me thinks that the last six years has contributed.

I have heard of terminally ill parents writing letters and recording videos as a note to their children in later years. This can combine both a memory and also a way of being part of their lives. I think this is a really good idea. Any way of preserving our loved ones has to be good.

However, I truly feel we have to be conscious of the things we do every day. It may be hard, but trying to make the simple daily life fun and happy is the best way to preserve memories. Engage with children, joke around, cook nice food, write down the recipes for them, help them with homework, teach them skills. This is how we preserve ourselves.

These are the ways to make happy memories at Christmas. Play the dominoes and watch the festive films. Make biscuits and pies. Finish that puzzle, and laugh at bad cracker jokes. We are going to do that over the coming days, and I fully intend for us to enjoy it, despite how we are feeling mentally and physically.

Side note

I have finished this whilst listening to the Terry Hall album Home. I was shocked at his passing last week, and even more so when discovering it was of Pancreatic Cancer, and with a very rapid decline. His work with The Specials shaped the fabric of modern Britain, and documented racial tensions extremely succinctly. The following track was co written with the Lightning Seeds on Home.

Trials and Tribulations

It’s been a while since I updated this, so first, Happy Christmas to all. We had a nice time, usual rushing around visiting relatives, but we have managed to get some rest. It is hard – my wife doesn’t have the same energy as she used to, and also struggles with having people staying – she likes things just so, and not having people mess things up!

The big news came just after the last lot of scans (see my last post). My wife was called to say there could be a place on a clinical trial. This could be massive – apart from this the only option might be chemo. One person had dropped out (reaction to the drug and nothing sinister), and so my wife had to go in for scans, and blood tests. It was two days in the Marsden – which was quite stressful for her, as she had mentally come to terms with no more trips in. The trial itself would entail an overnight stay every 6 weeks, and then a weekly visit to have bloods taken. A big commitment, but hopefully worth the time.

We were unsure at first – this is Phase 1, so very early days, and obviously means no guarantees of what the reactions might be, how major the side effects could be, and no knowing what the mental impact would be. My wife really struggles mentally with going into the Marsden, and so this could be a last straw.

After the usual delays, and issues with blood taking and results, we are now waiting to know whether she will be accepted. We hope she will, and have mentally come to terms with the potential process.

So we will start the new year with some hope. Fingers crossed 2020 will bring some good progress – it would be a change for the new decade.