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Carers Week 2020: We could be Paddington Bear – a story of CLL and oranges
In the week before the schools closed, I remember phone calls to my husband in London convincing him to pack as much of his essential stuff as he could feasibly carry and get on the train to be with us. I had been watching the news; I was very concerned they would stop people moving around the country, plus, we all needed to be here together.
Here is west Wales. He was supposed to be moving here shortly after we moved, but then he was diagnosed with chronic lymphocytic leukaemia (CLL) in 2015. Fast forward just four years, and he was admitted to hospital in absolute emergency, with a platelet reading that, by the end of the first night, was one. Just ONE. The blood was being held on the inside of his body by luck and willpower.
We, me, and his two children were here in Wales, hundreds of miles away, unable to bring him things, or visit or anything. We did visit, and we did take things, but not in that emergency first day where he had to be alone. This was April 2019. The rest of the year was given over to hospital admissions, pancytopenia, treatments, failed chemo, weekly blood transfusions, IVIG, etc etc etc.
By the time they announced school closures, I was determined, even though he was doing better, that we all needed to be together. If he became ill again in lockdown on the other side of the country, what would that be like? No. And so he travelled to live with us, and so we began lockdown, and shielding as a family.
His work, which had kept him in London, suddenly became doable from home (I mean, it’s not that simple, he is an essential keyworker, and usually some of his work involves visiting and preparing care homes for inspection. Luckily, enough of what he does can be done remotely to be achievable from home and with Zoom and goodness knows what other tech). His care was transferred, which was a worrying thing, but in the circumstances better than any alternative.
The six-year-old and the 13-year-old attended school as long as possible. I managed to track down ethical toilet roll online, and reminded everyone that, while they had all laughed about my Brexit stash of tinned food, pasta and soap and cleaning products, we now had no need to stock pile; we could stay out of the shops. I managed to get one last supermarket shop delivered before the chaos descended.
At least one of our children is on the autism spectrum, and both have very specific and restrictive food issues, along with significant anxiety about new things, which is why I had been amassing my collection of safe and non-perishable foods since the issues around Brexit and supply chains became clear to me. This meant that, when it became impossible to get supermarket delivery slots, I stayed up at night trying to find solutions to keep everyone fed and healthy. I scheduled farm meat boxes for April and May. I could not get a fruit and veg box scheme to deliver round here, we’re too rural and anyway, none of the national ones were accepting new clients. I ordered us a big fruit gift basket to be delivered after Easter, not knowing how or when we would be able to get fresh things. I have since discovered that there is a local veg box scheme, but they are seasonal and, believe me, we are signing up as soon as they reopen in July.
Focussing on how to feed people and make sure I kept them healthy stopped me from having to worry about the million other things I suppose. We all understood the rules as they pertained to us. This was one of the ways in which we were lucky, I think. We had none of the confusion other people had. No “how local is local?”. No “what constitutes exercise?”. We just had to stay in. We are very lucky that we have a garden big enough for the children to run about in so they can go outside, we all can. But just knowing that we go nowhere else is simple, and it means if we don’t have coronavirus, we can’t get it. You can’t catch a virus without coming into contact with the virus.
But my husband had to get his medication. He takes ibrutinib, and associated medicines. These are now delivered, except the ones he has to collect at the hospital. He has to attend hospital once a month, except when he has to attend twice in a fortnight because he is new to the area.
Luckily, I ordered us all face masks when they started to become mandatory in other European countries. Not medical ones, just cotton, multi-layer ones with fun pictures, so that the kids would not be scared by them. So, when he goes to the hospital, it is with mask and gloves. But, when he comes home, he has to go into isolation from us. For a week.
We are again lucky, because we have enough space for him to isolate himself in a bedroom, with a bathroom opposite and the playroom (which was the garage until we put in carpet and heating) and he can shut the door and keep away. Both I and our son are asthmatic, and this is the recommended course of action. We would struggle hugely in every other place we have lived to have room to do this. It is very stressful for the children, and it is odd to leave his meals and knock the door so he can collect them.
The second time he went to the hospital, I got a phone call to say his consultant was off with coronavirus, so he had been in contact with it and had to be tested. I feel so awful for the people who are waiting days to find out if they have it. He waited two hours and it was terrifying. His test came back negative, but he still had to come home that night and self-isolate for a week, because he had been in the hospital.
We shield together, so none of us goes out, because this way we can spend our time together normally except for his isolation weeks. Without this we would not cope. We have a porch at our house, which is an airlock for any goods and deliveries coming in so only I get them and wipe them and wash my hands.
A supermarket (not our usual one) stepped in and offered us a recurring delivery slot so we can buy food almost normally. We get the government food boxes, for which we are very grateful, and try to use everything (if we have too much of something, then the local food bank will collect it from our airlock porch with zero contact).
But did I mention I have children who have genuine neurological reasons for food issues? Yes, absolutely, the food boxes do contain things we use and need (before the supermarket help, no other new things came into the house and after, if they can’t deliver something on our day, we can’t have it, so…) but, what do you do with 10 oranges a week, when only one of us eats oranges?
I have made marmalade! I mean, it’s not difficult, but you do need jam jars and sugar. My daughter was super excited and promised to try marmalade to be like Paddington. Except she did not try it, on the grounds that she doesn’t like jam, so… We left marmalade for her teacher who uses the airlock to drop off school work, because we can’t go to the school play house to collect the new packs. I have made a Greek orange and honey cake (which is delicious, but is not sponge cake, so no one but me likes it). I taught my six-year-old to make a pudding I saw on Why Don’t You a billion years ago, where you dip ginger nut biscuits in orange juice and sandwich them into a caterpillar with whipped cream. EVERYONE liked this one! It’s the orange winner!
The one shortage I didn’t foresee was flour. You can’t buy flour. We can’t get it from the supermarket. It’s never in stock. Bread doesn’t last very long, and both my daughter and my husband will have birthdays during lockdown. I spent WEEKS, but I finally found a mill who will ship flour in 1.5kg bags, as long as you buy five of them. So, people can have birthday cakes and bread. Phew!
It’s hardest on our daughter I think, who remembers last year, when she couldn’t have a party because Daddy was too sick for us to be able to have lots of people in the house – his immune system couldn’t cope – and this year she can’t have a party because no one can come to the house at all. It’s important, I think, to talk about coronavirus, and how actually she is very safe, because I hadn’t noticed initially that she was worried every time she coughed, and she was hugely worried about her Dad.
Neither of our children will be going back to school when they open here on 29th June for a month. We worked out that if only a third of pupils will be allowed in at any one time, they will only be missing a week or so anyway, and it’s really too stressful because, if they are in school, their Dad can’t see them. He’d have to isolate from them permanently.
We don’t know if that will still be the case in September, but it is probably the single most stressful decision of the whole lockdown process for us.