Hi everyone. Thanks for being patient between posts. Honestly after I finished chemo I felt like taking a break from blogging, after the amount put out this year. Don’t worry, it’s not because I’m in a bad way!
Other than a seven week cold (yes, I can’t shift it, but at least it hasn’t gotten worse). I feel pretty good. I ran on the beach yesterday with Avery and often walk to pick up Grace on a 1.8 mile round trip with no effects at all. So physically I’m all good.
Mentally too for that matter. It’s great to be back at work and doing something. Also wanting to be active. Really it’s been a tough year and I remain in good mental shape, which I worried might take a battering during Chemo. Luckily it didn’t, so that’s something!
Anyway I spoke to my doctor a couple of weeks ago to get my prognosis. Firstly the treatment seems to have invoked a fill response. My bone marrow is much less infiltrated and my hemoglobin has now defaulted to amateur athlete good (should be between 12.5 and 15, now at 15.5… much better than 3.4).
The platelets are standard (150-400) as are the neutrophils (the white cells that fight bacteria).
So all showing good shape. The liver is fine, as are the kidneys, despite the beating that took. The spleen remains bigger than normal at 19cm but I was diagnosed with it that size and it grew to 31cm, so it could just be I have a bigger than normal spleen.
The only thing that remains low are the lymphocytes. These are the cells which has cancer in. They should be between 1-4ish and were at 52 when I had treatment. Now they are 0.4. so I am much more vulnerable to viruses (lucky there aren’t any of those about…).
So stats are good. He also said if I did nothing else my median time to next chemo would be 8 years give or take. So under 5 if I was very unlucky, over 10 if I was lucky. So he was well pleased.
Then we came to a decision. He wants me to take rituximab every two months for two years. This would extend my probable time to next treatment by a not insignificant amount (no exacts but could be an extra two, or three years). However rituximab is the number one drug that knocks out your ability to respond to COVID, out of over 300 drugs looked at in a big study. So if I do that I will be at greater risk from COVID for two more years rather than my risk lowering a lot mid next year, which is when my immune system will recover by otherwise.
So have rituximab. (Which I don’t reach to now and doesn’t have any side effects) and extend my treatment free remission by a number of years. But then be more vulnerable to COVID for two more years. Or don’t have it and potentially have less treatment free time, but be able to return to more normal behaviour mid next year, like actually seeing people and maybe even socialising.
It’s been a rough nearly two years since last Feb. I’ve not gone to parties (unlike the Tory party… Hohoho) not been into anyone’s house. Not been in shops. Basically become a hermit except for the risk my kids and Jo present. I would like to be able to act a bit normally, but rituximab may make this impossible.
To be clear there is always risk to someone with my condition, which will be higher than baseline population, but nothing like it is after chemo or after rituximab.
So I have to make the decision by early Jan and I am mulling it over. I would love to not need chemo for an average of 11 years, opposed to 8.. But the trade off….
His final advice was to avoid anyone unvaccinated and to make sure any contacts take a lat flow before seeing me. Most of my friends and family have been vaccinated, so that’s mostly fine. It means a lot to me that many have pushed it through with me in mind.
I have also had a third vaccine (full dose not booster) with a fourth booster to come when the time is ready. I will also begin returning my blood to the hospital that I needed transfused as of Jan. Hopefully not all 31 bags….
The year in numbers
6 weeks in hospital this year.
103 books read.
17 SNES games completed.
31 bags of blood received.
10 lots of rituximab received
6 bags of Bendamustine
178 needles put into me
Nearly died twice (potentially, tough to say).
Went for one run.
A lot of cups of tea.
Vaccines has 3.
Times spoken about vaccines…. More than 3.
Illegal parties had. 0
Time spent on phone games. 25 days.
Times cried. 5
Times laughed many. (My four and five year old are very funny).
Miles driven 5339.
Takeaway eaten 39. (I don’t feel great about this one).
Charity money raised. £11000.
Amazon orders 112
Alcohol consumed. 0.
So all in all its been a funny old year. :).