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It’s October 2016 and our lives are about to change. My husband Terry has been diagnosed with acute myeloid leukaemia (AML) and is going to need three courses of treatment.
For the first course he was in hospital for six weeks, in isolation. Things seemed to be going okay, ups and downs but doctors seem pleased with the results. He was home for two weeks then in for the second course. Unfortunately, that’s when everything went wrong, and treatment failed. Terry needed a transplant. He spent the next five and a half months in hospital, basically isolated in one room. We were lucky they found a match and he had his transplant.
I had already taken a step back from being a senior carer in a nursing home and was only working a shift or two a week in the kitchen. Almost out of the blue, I got a phone call to say Terry could come home. To be honest, I panicked, as it dawned on me that suddenly I was in charge and had to act if he became ill at home.
The doctors and nurses stressed how important it is to go straight to hospital, using the red card we have been given, if he gets a slight temperature and to look out for signs of Graft versus Host Disease (GvHD). Medication is coming out of our ears, all at different times, days and orifices. Hospital appointments are twice a week and I have to arrange transport – oh, don’t get me started on hospital transport! I do feel like his life is in my hands.
So here I am, now my husband’s carer, I’ve given up work completely. He is only home one night and then it’s 999 back to the hospital. He is in hospital a few days, back home for a week, then back in for a few weeks. At times I don’t know if I am coming or going. This has been our lives for the last three years, whether it’s been sepsis, different types of GvHD or influenza. Although, time in hospital is getting less and less. I have become aware of the signs that he is not very well and that he is hiding it, as he doesn’t want to go back to hospital. He totally refused to go once when England were playing in the World Cup semi-final. The district nurse made him sign that he understood the consequences, but I understood that one; I wanted to watch it too.
Being his carer has been a privilege, from doing personal care to making him laugh or sometimes cry and having to fight his corner, it’s brought us closer together. His care from the consultants and nurses has been second to none. We did have a few issues with our old GP surgery and I do think communication and understanding of his condition from the GPs might have helped us more. My friends and family are there when I need a break; a good rummage around Debenhams and a hot choccy can work wonders. There were times when I thought they must be getting bored of me now, because my life did just revolve around hospital and Terry. I didn’t have a lot else to talk about.
We now fast forward to February/March this year, I have started back at work part-time, four hours a day. It doesn’t impact on Terry too much, and he is starting to get stronger when suddenly his immune system decides to attack his lungs and the lining of his heart. He spends two weeks in hospital, just as the coronavirus hits the UK. I see virus hubs going up around the hospital, signs going up everywhere and a change in how the doctors, nurses, cleaners and catering staff work. I’m not overly worried as Terry comes home and things start to lock down. He gets the text message and letter from the government, the GP surgery ringing and then the consultant ringing to say he must self-isolate for 12 weeks, as he is at severe risk if he catches it. He gave him is email and phone number and said any changes to contact him immediately.
To be honest, the consultant told him that people with his condition on steroids are not surviving well with this virus. That scared the both of us. So, we decided to self-isolate together. I stopped working, then I became unwell. The doctors thought it was laryngitis; well, I had to put my phone camera down my throat and tell them what I could see, which wasn’t a lot! But because I’d had a temperature I needed to self-isolate from Terry. That wasn’t going to work as he was still unwell and needed looking after. There was no one else, the nearest family member two hours away. We did receive food parcels and the neighbours got us a few things, but we were struggling, and even though he was on a priority list for home shopping, we couldn’t get a slot. Then the council rang us to make sure we were okay and said that the supermarkets were working through the list. We did eventually, after about three weeks, get a delivery slot and have been getting one each week.
Then Terry started to get the chest pains back and started to feel quite unwell again. The GP surgery we have now were just brilliant. They came out, checked him over, took bloods and then spoke to the consultant. Ideally, he needed a scan and X-ray, but they said they couldn’t risk him coming into hospital. If we could manage his pain and double the steroid dose, we would see how he goes. But if his oxygen levels dropped any more, we would have to phone for an ambulance. His oxygen levels did drop for the next few days, but we were both worried about him going into hospital and we were hoping the steroids would kick in and improve his symptoms, which thankfully they did. The GP came out again to check he was improving and to do more bloods.
Being his carer during this pandemic has been different and more stressful, I think, especially as he is still fighting the latest illness. Making the right decisions at the right time has made me quite anxious at times. Getting his prescriptions has been a nightmare; I couldn’t ask a neighbour to go, as it can take sometimes 30-40 minutes waiting in a queue outside to get it, and then they haven’t got all the tablets. I can’t just go out and have a coffee or a chat with friends, I can’t see my mum, son or sister at the moment, as they are too far away and feel I can’t risk it. We did go out the other day, when they said the shielded could go out once a day, but Terry was physically shaking and we were only out for five minutes. My priority is Terry and keeping him and me well. I’m not sure when life will be somewhere near normal again, but we will carry on being positive and will come through it closer still, especially as I’ve taken up baking and we are both enjoying my cakes.
My advice to carers is be truthful; if you’re having a bad day, say so. If you need help, ask. There is only so much you can do; being a carer is not always easy. There have been times I’ve got cross with Terry and him with me. Sometimes you have to remember the bad times, to realise how far you have come.