It’s been a bit of an up and down two days. I felt pretty bad on Wednesday and called 111. They told me to go to a and e, and I did so at 10:30pm. It was really busy there so they made me go and wait in my car with my phone rather than in the waiting room. (That was nice and warm). Eventually I got seen, had a blood test, and then a chest x-ray.
The X-ray was clear, which was good. The blood test showed my lymphocytes were at 0.2 (this is very low. Normal range is 0.8-4). I then had a long chat with the doctor and then the OnCall consultant. I said that I should be given the antivirals as they are very much designed for people like me. The doctors didn’t agree and said unless my symptoms were worse and my blood oxygen was lower than 95 they wouldn’t prescribe them.
I did fight my corner, and pointed out the criteria on the NHS website (covid symptons and extremely vulnerable) but they weren’t having any of it so I was sent home at 4am (that was a fun drive).
The next day (Thursday) I presented at a different a and e in the afternoon as I had started to feel crappy. I also took paracetamol, so by the time I got there my temperature had dropped from 38.5 to 37.2. They, again, asked some questions and then sent me home without drugs saying the antivirals were for people who had more severe covid symptons. .
So anyway it’s now Friday morning and I’m at home. I don’t feel too terrible at the moment, although it does seem to come on in waves, and then I feel better for a while. My specialist is trying to get the antivirals out to me, but no luck yet. (Honestly why bother saying you can get them in my situation, and then not giving them. After all they are supposed to prevent symptons getting worse if you give them early).
My taste has become a bit muted and my temperature spikes up and down but all it feels like is either the flu, when it gets bad, or a heavy cold when it doesn’t. I’ve had much worse illnesses (so far). Let’s hope it stays pretty benign.
It’s odd as well. If I get through this without too much trouble it will be a great weight off my mind. I’ve been really worried about catching covid for 2 years, with loads of rhetoric about how bad people with lymphoma can be with it. Now I finally have it I’m hoping it passes quickly. If it does I will feel much more comfortable about being out and about and living properly again. I don’t want to tempt fate though, it could still get worse but for now it’s not too bad. Let’s hope I just stay a bit snotty for the next few days.
I find this absolutely horrendous! My mum has marginal splenic lymphoma too and has been ‘promised’ the anti viral if needed, which put my mind a little at ease. We live in Chelmsford, I think you are close? Was this Broomfield that refused? I hope you are feeling okay xxx
It was both Broomfield and Colchester, as I went to both. The best bet seems to be going direct to your specialist, which I am now doing. Sorry to hear about your mother. I hope she is well! Xxx
Thanks for the advice so quickly, unfortunately we don’t much have faith there either, but at least we can make the consultant her first port of call if she needs it. Thank you so much for your blog she is on a similar time frame as you (but in her 70s) and you’ve been an amazing font of knowledge and support over these years ❤️ ❤️ ❤️ ❤️
I am always happy to help. It’s never easy for anyone to go through this journey, or have a loved one go through it. I’m genuinely pleased you’ve found the blog useful. Give my best wishes to your mum!
Hi Marcus,..I had Rituximab back in November.They have told me ,by letter that I can have some treatments, if I should test positive,I think its an infusion of another monoclonal antibody.They also sent me a specific PCR Test kit with my own barcode attached as it has to be done within 5 days of first symptoms.I cannot believe you have not had this as well.I have SMZL and follow your Blog.It has been very helpful since my diagnosis, in 2016.Thankyou Marcus.
Bob Livings said:
I have been following you blog for a while and hope you get better soon. I have SMZL and had a Stem Cell transplant this time last year.
I caught Covid In September last year 6 months after my Stem Cell and I was O.K with it. I now feel pretty good that there is another worry off my list ( Covid) and I can now carry on with fighting my SMZL with out the worry of COVID. Good luck and keep fighting