Wednesday 19th December, 2018

Today’s change of plan

Posted by at 5:18 pm in Health, or lack thereof.
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Fifth Bone Marrow Aspiration with Trephine... the preliminary results are in. My blast-count (immature blood-cells) count is too high. 12%. Treatment opinions are divided.

One consultant favours treatment with Azacitidine, during which I would be an outpatient. It wasn't stated, but I'm guessing that I'd have to attend Day Ward for each subcut dose.

Another consultant favours the FLAG-IDA regime, which would mean being resident on Ward 41 again.

They won't be able to decide until they have the full results of the cytogenetic test.

I've been told that both options lead to me needing a stem-cell transplant if a suitable willing donor can be found. But here's a thing - if you follow the Azacitidine link above, it states "Azacitidine is used when treatment with a stem cell transplant is not suitable."

Hmm...

As before, no meds to tide me over Christmas, but the next consultation has been brought forward to 27/12/2018. Whether the full results of the cytogenetic test will be available by then is moot - the full test takes several days.

So that's the family's Christmas holidays well and truly fcuked.

Tuesday 18th December, 2018

Sour Humbug

Posted by at 11:52 pm in Health, or lack thereof.
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Fifth Bone Marrow Aspiration with Trephine... done.

They'll phone me with the results.

No meds to tide me over Christmas and the New Year, next consultation on 03/01/2019.

I'm to pack a bag ready for a long-term stay, I'm to try to stay infection-free and I'm to call it in if I feel... ill. That's an odd notion considering that I've been feeling ill and fighting infections and falling blood-counts since June.

I broke the rules tonight - the Christmas Pub Quiz beckoned. I think we managed 4th place out of 14 teams. A few beers and a curry with good friends. A top night.

There's more to life than being kept alive.

'tis the season to be jolly...

Monday 17th December, 2018

Boing

Posted by at 9:50 am in In the garden, My vids, Video (YouTube, Vimeo etc.).
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Not quite a Flying Fox, but kudos for effort:

Friday 14th December, 2018

Regular visitor

Posted by at 8:44 pm in In the garden, My vids, Video (YouTube, Vimeo etc.).
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One of two foxes that visit our garden almost every night:

Humbug

Posted by at 12:58 pm in Health, or lack thereof.
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This morning's scheduled call from the LRI has been received. Based on the test results from the blood sample provided by me on 11/12/2018, the raised serum ferritin level and the palpitations are probably due to infection, and the raised platelet level is probably due to the blood analysis machine mistaking malformed red blood cells for platelets. I was told that it would need further investigation, so I could look forward to another Bone Marrow Aspiration with Trephine. I was given the choice of either 24/12/2018 or 28/12/2018, I opted for the latter so that I wouldn't be sore on Christmas Day. Call over.

Chris and I discussed the call. The notion of an infection was interesting, so we questioned it. We'd all been aware that I have had infections since June, and aside from the 5-week course of antivirals that ended yesterday, I'd been prescribed nothing else. Chris called them back to see if they had factored that into their plan, to find out if I should have been on antibiotics, and to find out if I would need more antivirals.

I waited for them to call back.

I just took the call... the plan has changed again. Whether or not I had been taking antivirals or antibiotics, they want me to stop taking them immediately. They want a bone marrow sample that shows the infections and their effects. And the lead consultant has changed tack, now she isn't happy leaving the bone marrow sample so late, now she wants me in on Tuesday 18/12/2018. Their plan doesn't extend beyond that, so I have no idea if I'll have meds after the sample.

As if to underline the confusion inherent in their system, while composing this blog entry the postie delivered two letters, both addressed to me. Identical copies of the letter detailing the previous consultation of 22/11/2018. In theory my GP should get one copy, I should get the other, but I received both. You really couldn't make it up - even the simple act of correctly sending a letter seems to be beyond them!

Looks like I'll have to don the winter-wear and deliver it to the GP myself. At the very least I'll be able to make sure that they receive it. If you want a job done right...

Thursday 13th December, 2018

Still perplexed

Posted by at 8:34 pm in Health, or lack thereof.
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I had to attend for another blood-test on Tuesday 11/12/2018, and I got the results by phone today. Nothing is in-limit. Hb, WCC and neutrophils have all fallen significantly. Serum ferritin is now way over top limit at 862 with no explanation. The nerdy counts charts have been updated.

The consultants still aren't sure what's going on, but they were happy to continue with their plan, which would leave me hanging for another three weeks. Then I mentioned a couple of things that they'd not factored into their scheme...

First up is a problem that's reared its ugly head only recently... palpitations, specifically atrial flutter. It started a couple of weeks ago, once a day, but over last few days it's been a couple of times per hour. It's how the heart copes when there's not enough Hb in the mix. I had it before, when I was an in-patient undergoing chemo cycles 1 and 2.

Then there's the farce that was the "urgent blood test" that I requested at my GP surgery on Monday 03/12/2018 because I'd been feeling crap for a week or so. They took the samples on Tuesday 04/12/2018, the Walsgrave performed the tests that day, and true to the NHS' definition of "urgent" I was still waiting for the results to be released to me late on Friday. Their results are similarly bad but they don't match the trend of the LRI results, which is a bit of a worry. I decided to omit those results from the nerdy charts.

The consultants are going to revisit their plan, and I am to expect another call from the LRI sometime this Friday morning. I've placed my bet on being invited to another Bone Marrow Aspiration with Trephine, Chris has placed her bet on courses of antivirals and antibiotics. I think we'll both be right.
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