It’s been a very odd couple of weeks and I really should have blogged by now. In my last post I mentioned how kids in Grace’s class had covid. We tested Grace on the Tuesday afternoon after school, and she too had covid. Oh dear.
I immediately went upstairs to consider options. Luckily I hadn’t played with her, or put her to bed, since Sunday as we knew her catching it was possible. I quickly put out the situation on my dad’s group on WhatsApp, and then began to look for an Airbnb. There wasn’t much on there for immediate stays but luckily, my friend, Rob came back very quickly and said I could hide in his annex for a week if needed.
This was super kind of both him and his wife Sam and with the need to vacate being pretty urgent I packed up a bag and left the house. It was sad leaving Jo and the two kids in a covid house, but we agreed it was much safer than me risking getting it, even though I might already have been exposed. After all I am still heavily immunocompromised after my Chemotherapy.
I settled into my new digs. Sam and Rob’s annex has a shower and a kitchen, as well as a desk for working and a blow up bed. It was great! They were also the perfect hosts putting extra food in their weekly shop and welcoming me into their lives readily even though I was a very unexpected house guest.
The days passed, with work being busy. During the evenings I would hang out with my hosts, and I also built up a rapport with their two lovely daughters, who I enjoyed playing with every day. I especially enjoyed dancing with their youngest who is a very cute two year old.
I also tested for COVID every day. One day past. Then another. Then a third and all my tests came back negative. I looked like I had dodged it. Meanwhile, and thankfully, Grace manifested no symptoms. Although Jo was couped up with her and Avery for ten days, they also didn’t develop symptoms. So although it was tough being away from them, but more especially for Jo, at least nothing got worse.
I missed the kids and sent them videos of my made up stories every night, and spoke sometimes during the day as well, but it wasn’t the same.
Grace kept testing positive and ten days passed quickly, with Rob and Sam being amazing. Before I knew it it was day eight and my hospital appointment.
I headed into Ipswich hospital and had my blood test. There were four people in the room, three were junior doctors, and I feared it might be a little rough, but luckily the junior who did the test was great. Equally luckily I now have a lot of blood and didn’t need a third or fourth try.
Before long I met with another doctor and then Doctor Hodson. We chatted about the all important decision. Maintenance rituximab, or not. Having thought long and hard about it, and the ongoing risks with being immunosuppressed whilst COVID was still high (a huge risk, as rituximab makes you really vulnerable to Covid). I decided to not have the treatment. Another reason was that the need for chemo was bought on by bone marrow infiltration. Rituximab doesn’t touch this, so my next treatment will likely be chemo again anyway and the maintenance might not delay it too long.
Doctor Hodson agreed, which made me feel better about the decision. Life is full of tough choices! We then moved on to the blood letting. I had 31 bags of blood in transfusions last year, and now I need to give some back. This is because each bag has iron in it and the body has no mechanic to get rid of excess iron. A little too much isn’t a problem, but instead of 450 iron counts I had over 3000. The only way to remove it is to give a bag of blood and then for the blood to be destroyed (because of, you know, blood cancer). Then you repeat this until the iron is back to normal. If you don’t reduce the iron you will end up with organ failures and macular degeneration in about ten years, two things I should probably try and avoid.
This should also sort out my persistently above normal liver counts, so it’s something I’ll just have to go into Ipswich for and get on with. It doesn’t take long, twenty minutes or so, but it’s necessary. Anyway I begin this on Friday and will do so every three weeks for likely around twenty bags. That’s the next year sorted for activities…
So an eventful few weeks with a surprise holiday for ten days spent at my friend’s house. Grace’s class are all back now, but given one in eight children are estimated to have COVID in the London area, and the number of infected are likely their highest ever (testing numbers have been way down since the don’t worry about a PCR route). (Although the policy for this is to still register the latflow online and still get a PCR if you have symptoms, not that the advice actually reads like that) I expect I might well have to hide from Avery next. Still one recovered COVID patient in the house, without them transmitting is a good thing!
I hope you are all well. Keep safe until next post, and I hope your January’s weren’t as eventful as mine!