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It’s been three months since I last wrote and that is a reflection of how things are going. (Plain sailing for a few months, let’s not tempt fate..) I decided to start with a sort of bad news good news list (spoiler the good is better than the bad at the moment, so I’ve flipped the list).

Bad news, I still have cancer (not a shocker, seems there’s no cure.) Good news, my bloods are still looking within range a year and a half after chemo.

Bad news, I have been giving blood every three weeks for the last year to get rid of all the excess iron from the transfusions. Good news, I am pretty much done. Either one more or no more and my ferratin is back under 500 and normal.

Bad news, my immunoglobulin is still very low and likely to remain so far a bit. (one of three white blood types, the one that deals with memory of infections, like vaccinations) Good news the other two types, neutrophils and lymphocytes are both back to normal, so I have a mostly working immune system.

Bad news….. actually, I’m chock out of bad news. Good news, I’m happy at the moment, enjoying life and work, and generally the kids are doing well and I’m enjoying watching them grow.

So really things are pretty good at the moment. Sure I’ll be back on watch and wait again after the venesections are finished, but that will likely stretch out to 3,6 and 12 months again just like when I was first diagnosed. (Fingers crossed). The immunoglobulin thing is a slight worry, but I’m also on aciclovir and co-trimoxaxole, so that’s keeping me protected.

Otherwise it’s been ten years since I was diagnosed with cancer at the beginning of June.

At the onset I read ‘Three-quarters of patients survive five or more years; more than half of patients with SMZL survive more than a decade after diagnosis.[12]

Patients who have a hemoglobin level of less than 12 g/dL, a lactate dehydrogenase level higher than normal, and/or a blood serum albumin levels of less than 3.5 g/dL are likely to have more an aggressive disease course and a shorter survival.[12] However, even high-risk patients have even odds of living for five years after diagnosis.[12]’

I’d argue that my hemoglobin may have nudged under 12 a little (for those who haven’t been following it got to 3.4). It was also a little touch and go, survival wise, in 2021, but really it’s been a big win. Sure it could still transform to a more aggressive type as it does about 20% of the time, but that’s all in the future. For now I’m pleased I’ve nearly made it the ten years from diagnosis, long may that continue.

Thanks everyone for continuing to take an interest. For those fellow sufferers, I hope you are well and in as good shape as you can be. As always reach out if you want to talk or if I can help. Otherwise I hope for other long gaps in my blogging, unlike the last two years, and I’ll blog again soonish. :).