Day 107

I haven’t blogged for a few weeks. I’ve been starting new treatment for Crohn’s Disease, and I’ve been extremely tired.

In June, for the first time in three months, I had physical contact with another person from outside our home. It was quite an event. Or certainly felt like it. The night before my first “infusion” of the new treatment (it’s like a drip, and, can take up to a few hours), I struggled to sleep. In my mind I was going over the journey from home to ward and back again, and all the processes in between. When thinking about the number of people with Covid 19 who might have been in x-ray before me, I nearly chickened out.​

However I felt more confident in daylight, as you do, and we set off in the car. Littl’un insisted on wearing his mask – though he wasn’t actually going to be getting out of the car at all. Solidarity!

I’m a bit of a prepper, so when Big D and Littl’un dropped me off at the hospital entrance, I had a plan of action. I pulled up my mask and walked inside. I was dressed all in black (all same colour for bunging in washing machine on 60 degrees afterwards), and was wearing crocs (OK – I know! – but easy to disinfect).

As I walked towards the ward there were quite a few differences from the norm. Lots of “keep left” signs, and tape on the floors about social distancing. However, as I passed several groups of laughing members of staff, none of them were either social distancing or wearing masks. It was a bit disconcerting – and when, within a day or two of my first visit to the hospital, the Government announced that all hospital staff had to wear masks even in non-clinical settings, I certainly understood why. I bet more than one person had seen what I did and turned around and went home.​

When I arrived on the ward, the usual reclining chairs had all been removed, along with all other non-essential items. Even the clock was gone.

I was the first arrival, and was told to sit in one of the easy chairs and make myself comfortable. The receptionist watched me with amusement as I took a packet of disinfectant wipes out of the carrier bag on my arm, and wiped down the over-bed table before putting the carrier bag down onto it and removing my mug and tissues. Then I wiped down all of the chair – and another one that I pulled in front of it – before sitting down, kicking off my crocs (see, not so daft!) and putting my feet up. Now I was set up for the morning!

When the specialist nurse arrived, the receptionist had clearly told her what I’d done. She laughingly told me that the ward was cleaned all the time, and not to worry about it. She then washed her hands (the first of many times I saw her wash her poor red hands that morning) and started with blood tests. All the staff on the ward wore masks all the time, and while it felt strange, it was also reassuring.​

For the whole of the morning there was just me and one other woman in the ward for six.

We had a nice chat, which she said she really enjoyed as she was shielding alone and was struggling with isolation, and we agreed, when the tea came, to lower our masks until the nurses came back, as we were sitting more than three metres apart. It was actually very enjoyable. It was a change of scene and a change of company. It’s surprising what you appreciate.

We also shared a moment which I think we will both have retold many times afterwards. As we sipped our tea, the cleaner wheeled his cart onto the ward I’ve never seen anyone work quite so slowly and painstakingly, and yet so ineffectively. He started to the left of the door, and squirted some disinfectant onto a cloth, then began by wiping the bin. Yes, the bin. The lid, round the rim, and the sides – oh so carefully. Then, using the same cloth, he started wiping the sink beside the bin, the taps, and the mirror. With another squirt of disinfectant the cloth then moved onto the windowsill, and blinds. He then threw the cloth away and took another one to start the first bay. He began with the remote control then the TV, then another squirt of the disinfectant, and a wipe across the top only of the table, and the seat of the chair (not the armrests or uprights), and then he moved on to the next bay. The woman opposite caught my eye, her eyes wide with shock, but by the time the guy got to the end of the ward, her eyes were dancing and we were both struggling not to laugh out loud. Thankfully, as we were sitting there, he missed our bays out completely. I was so glad I’d done my own cleaning on arrival, but, oh, I wish I’d filmed his performance. It could have gone viral.​

The whole morning went well, and, apart from the obvious, it felt very safe. In fact, I was quite disappointed that the infusion for the new treatment took a lot less time than my previous drugs.

I’d been quite looking forward to a snooze. I told the nurse I felt a bit cheated, but she said they didn’t need lazybones like me in there (we’ve known each other nearly twenty years) and to get home and get the dinner on. When the boys came to pick me up, Littl’un said he had missed me so much and couldn’t wait for a cuddle (first time we’d been apart since lockdown, of course). Big D had run me a bath at home, so I stripped at the door leaving my crocs outside, put my clothes into a bag then into the washing machine, then went straight upstairs for a bath and hair wash – and then my two hour snooze in bed. No way was I going to make the dinner! I’d been making three meals a day for three months. This was my chance for an evening off and Big D was happy to oblige and be chef.​

The whole experience really wasn’t so bad at all, and I was quite happy to go back for my second infusion two weeks later.

Sadly, the same cleaner wasn’t on duty, so the entertainment wasn’t quite as good. Though the old fellow next to me did take his cotton hankie out of his pocket, shook it, pulled his mask down, blew his nose, and then put his hankie back into the pocket. Thankfully I left before the exercise was repeated. Interesting times.

Day 117

Today I had a “moment”. I suddenly found myself getting all upset about how on earth we are going to reconcile Big D and Littl’un’s desires for things to “go back to normal” – hastened by the Government’s ‘push’ strategy towards getting society back out there and spending – and my own desire to stay alive and consequently live very differently in these times of COVID 19.

I must confess that today I’ve felt very “got at”. Starting from first thing, it’s been relentless. At 9 am I had a text from Littl’un’s swimming teacher (first contact since March) talking about one-to-one sessions starting again from 25th July in line with Government guidance. Then the post arrived, with a letter from Littl’un’s special school with start dates for September and details of which class Littl’un will be in (he’s not supposed to be in a “class” – he is on a bespoke programme of education). Then a letter from the local authority. And then I had a phone call with my mother. Yesterday she and Dad were out with Brother The Younger. He’s been helping the Rebel Parents sort out our aunt’s things, and took them to the solicitor yesterday to find out about probate. He’s been brilliant this week, also taking Mam to hospital on Tuesday (when she was, as expected, diagnosed with Parkinson’s), taking them out for a flask of coffee and a walk at the beach, as well as doing their shopping. Today Brother The Elder and his wife – who have been working at HMRC throughout the crisis – visited Mam and Dad, took them a Chinese takeaway lunch, and they all ate together indoors. Mam was thrilled, and it sounded lovely. She said the only thing that was missing was a hug – but they stayed a metre apart. Mam and I chat on the phone most days, but this last week her tone has changed – in line with Government messaging – from “How are you? – I hope you are all staying safe,” to “It’s really not fair on the kids – they need to be getting back to normal.” In fact, I wish I had a pound for everyone who’s asked me where and when we’re going on holiday, and if Littl’un is excited about going back to school.

After I came off the phone I just burst into tears. Not like me at all. I feel like within the space of a fortnight my life has gone from being valued and shielded, to me being viewed as an obstacle to my family’s futures, and therefore I’ve become legitimate potential collateral damage.

It seems that the Government’s “survival of the fittest” strategy is now generally accepted by the public – as long as the NHS and other public services can cope with enough beds in ICU and enough fridges in the mortuaries, deaths are unimportant. The daily death toll from COVID 19 has gone from being headline news and shocking, and the numbers being quoted by all and sundry, to being hidden away deep within other news. Nobody’s bothered any more – How many people died yesterday? Oh, I dunno. I’m not really bothered any more – everybody’s just got to go out and get on with things, haven’t they?

It is all very dis-empowering, and there is suddenly the feeling not only of life passing me by, but that the majority of people seem actually keen to push the vulnerable aside, their safety no longer of concern, in the rush to get back to the pub, the gym, the beauty salon, the cricket match.

I feel that the death toll doesn’t really matter to people any more because 99% of those who are dying are old, or have underlying health conditions, or both, and are “more likely to die any way”. I have been asked by several people why I’m still shielding when “everything is getting back to normal”. My specialist nurse has told me that no matter what the Government says, I am in the highest risk group of serious complications if I catch COVID 19, so I must continue to be very careful. Which is great when you are supported. Not so easy when there’s a tidal wave pushing you to do the opposite.

The bottom line for us is that we are the last line of defence between Littl’un and the care system.

If anything happens to our fragile little unit, the outlook for him is grim. Staying alive, healthy and together is our number one priority. I really couldn’t give a fig that we could get a tenner off a meal on a Monday or that nail bars are open – or even that we might get fined if we don’t send him back to a school full of kids with extremely challenging behaviours, who cannot socially distance, located in an area of multiple deprivation that has had one of the highest per capita rates of COVID 19 in the UK during the first wave.

Littl’un, seeing that I was upset, ran into the kitchen. I thought he’d gone to hide, as strong emotions can be scary for him. He hadn’t.

Our fridge is covered with magnetic frames full of photos of our family and friends. He quickly came back in to me with his arms full of photographs of me with him, with Big D and with our friends, doing lovely things. “Jac”, he said, “This is you – look – and this is how I see you – smiling and laughing all the time. I don’t like it when you are crying today, and I am going to cuddle away the sadness. You can still cry the tears, but they will soon stop when I’m hugging you. I am happy when you are happy.” He climbed into my lap and rubbed his head against my face – the recent very short summer haircut feeling like a little rabbit. He was right. I soon felt a lot better and was smiling again. We’ll work it out.