16th September 2020
Members have been telling us how they have been coping during the pandemic:
I was diagnosed in 2010 after a routine blood test for cystitis and was treated with 5 rounds of Bendamustine Rituxin in 2014. I relapsed 18 months after treatment and started the Clarity trial in October 2016 – Ibrutinib and Venetoclax. I stayed on Ibrutinib at the end of the 2 year trial as I hadn’t achieved MRD negative in my bone marrow. In June 2019 the trial was extended and I went back on Venetoclax which was due to finish in June 2020.
It all started quite innocently on a Thursday a week and a half before lockdown. Had a bit of a headache and a bit of an upset stomach enough to cancel my hair appointment just in case I’d got something. Felt much the same the next day. Took some paracetamol and fell asleep on the sofa. Saturday morning, interestingly, I felt quite a bit better and managed 15 minutes on my rebounder. By evening I didn’t feel too good and took some paracetamol and went to bed. The next morning my temperature was 38 and I had awful diarrhoea which was what actually prompted me to ring the Christie hotline. Whoever I spoke to said they didn’t think I had Covid but to come in so they could assess me. I was admitted and put in a room on my own. They did all the normal ‘obs’ and blood tests and I stayed in overnight. The next morning a doctor arrived complete with mask, plastic apron and rubber gloves and said they were going to swab me for Covid although they thought it was extremely unlikely that I’d got it. I didn’t feel too bad and was eventually allowed home later that day. Fell asleep on the sofa, woke feeling dreadful, took paracetamol and went to bed. The next morning a doctor rang to say I had tested positive and they’d really like me to go back in again for a chest x ray and heart monitor. At that point in time I really wasn’t feeling very well and just wanted to stay in bed. I pulled clothes over my pyjamas and reluctantly set off back to the hospital.
By this time my son wasn’t allowed to come in and they were stopping everyone at the main entrance to ask if they’d got a dry cough or a temperature. This made getting to Ward 1 where I had been told to go difficult and having sat down on the floor while they got someone to deal with me I was eventually put in a wheelchair and taken to see if they could get me in the back way. This proved not possible because of building work so eventually everyone had to be removed while I was taken in via the main entrance. Having finally got in I had a chest x ray and my heart monitored and was put on a drip. I was told to stop taking my Ibrutinib and Venetoclax which really bothered me, but I suppose it was to give my immune system a chance. By evening I had dreadful diarrhoea and felt very rough. The next morning the doctor said they were going to move me to the haematology ward. I can remember asking when the breathing problems would start and being told that they might not which was at least slightly reassuring.
I have to admit I was beginning to feel frightened by that point and it felt very strange being wheeled down the empty Christie corridors with security 2 metres in front of me and 2 metres behind. I went into a lovely room which I think was usually used for young people having bone marrow transplants. I was there for 5 days. The diarrhoea eased off, the high temperature remained and nausea kicked in. Apart from feeling ill in many ways the worst thing was the feeling of isolation. Of course, the nurses came to do ‘obs’ and blood tests but obviously didn’t want to stay any longer than necessary. I felt very alone. Things that stick in my mind about that time were the jugs of ice-cold water that kept turning up and I had to keep asking for water at room temperature. I just couldn’t get cold water down me. Getting a drip into a vein and keeping it there was proving difficult and one morning I woke up with a hand like the incredible hulk because the line had slipped out of the vein. Food would arrive and just looking at it made me feel ill. It was towards the end of the week before I managed a piece of toast.
At the end of the week I was allowed home. Both my sons had caught it off me but Chris who lives with me fortunately was over it in a week and was able to look after me or they wouldn’t have let me out. I came home in an ambulance complete with mask, a plastic apron and plastic gloves. I’m not good in the back of a car and by the time I got home I felt like I couldn’t breathe. My stairs are steep at the best of times and getting up them to my bedroom was so hard. I took to my bed and there I stayed for the next four weeks.
The Christie was very good and somebody rang me most days to see how I was. I had paracetamol, anti-nausea drugs and antibiotics which were delivered to me when I needed them. Each dose of paracetamol couldn’t come soon enough and although I didn’t really have breathing problems as such I was frightened to cough because I couldn’t catch my breath and getting to my little ensuite which is not very far left me breathless and totally exhausted. I had a stool in my bathroom so I could sit down to wash my hands and at last clean my teeth. I never did work out how to get just cold water out of the taps in the Christie! There was no way I could get in the shower and eventually managed a hair wash the old-fashioned way by sitting at the wash basin and getting my younger son to pour water over my head. I did manage to keep eating small amounts thanks to the anti-nausea drugs. I had a thing about wanting certain foods one of which was Knorr chicken noodle soup and another one was chocolate tea cakes. A variety of tinned soup turned up until my younger son eventually found the real thing! All drinks had to be warm, nothing cold would go down. Friends were very good and kept us going with a variety of cakes, biscuits and pastries. I remember my NHS letter about being vulnerable turning up which I threw to one side thinking well that’s a bit late!
By the end of week 4 I was beginning to feel a bit better when I developed a sore leg. At the back of my mind I considered the possibility of a DVT but tried to ignore it. I really didn’t want to go back into hospital. The boys however were concerned and rang the Christie, who arranged for me to be admitted again. This time I did get in sort of the back way, back in a wheelchair again, complete with mask and security escort 2 metres in front and 2 metres behind. An ultrasound was arranged for the next day and yes I had got a blood clot in my right calf probably due to four weeks in bed but also apparently being seen with the Covid virus. I came home with blood thinners which I was to take for the next 12 weeks. I was swabbed again and was still coming up positive to Covid.
Over the next couple of weeks, I managed gradually to spend less time in bed and more time on the sofa in the front bedroom where I could watch what was going on outside. From there I eventually graduated to the sofa downstairs bringing my trusty stool into the downstairs loo. Somewhere round about five and a half to six weeks after I was first ill, the fever went, and I made steps back to normality. After 6 weeks I was finally able to have a shower and a proper hair wash. I managed at last to eat at the table and was able to sit outside in the sunshine and enjoy the garden and listening to the birds. I eventually started walking round the garden to get my legs stronger and a couple of weeks later was back on my rebounder if only for 5 minutes. After 7 weeks I was finally able to go out and clap for the NHS and speak to neighbours.
On the plus side of all this while everyone was getting a bit fed up with lockdown, I was just so pleased I was still alive and no longer felt ill. It felt wonderful. Friends and neighbours were so kind and sent flowers and cards as well as helping us with food. I had another swab for Covid taken when I went in for a bone marrow in May and happily I was no longer testing positive for Covid and much to my relief I was also still MRD negative so am now off the trials drugs.
I am now fully recovered apart from a slightly swollen ankle and feel very lucky that that is all its left me with. Hopefully, I’ve developed a few antibodies but am not willing to risk a repeat performance so for the moment I’m quite happy to enjoy being at home.
Thanks for reading my story.
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