Feelings of Fraud

My transfusion schedule cuts across many of the other patients’ chemo schedules.  We get to talking, and a bit of a theme has emerged.

One of my friends has inoperable liver cancer, but most of the time she looks great, she’s still driving herself to chemo and oncologist appointments.  She lives with  the feeling that eventually some-one will jump up and yell to the world, “hey everyone, she’s’ a fraud”.

Often, when friends visit, they exclaim “wow, you look good”.  Every time someone says this, I feel like I should be out there getting a job.  I have managed to do some small and not so small, woodwork projects.  The logic goes like this, if I’m well enough to do woodwork, I can’t be so sick.  If you can make a big honking table, you can’t be terminally ill.  Eventually I worked out that this exclamation is relative to the speaker.  And usually translates to “wow, you look better than I prepared myself to see.”

Two short notes; I have to sleep or at least rest for two hours for each hour in the workshop.

Note two, without minimising the significance of the issue for my female IT colleagues, this bears a striking resemblance to Impostor Syndrome.

The Not-So-Gentle Answer: 10. Perceptions of Strength

For many months now, I have been confused when people tell me that I am a strong person. Some people have even described me as the strongest person they know. This is their perception, and I can’t and shouldn’t argue with them. This blog post is the process of me understanding that perception of me by other people. Continue reading

B4 minus 4 days, and counting

I saw the oncologist today. The bone marrow biopsy results are in, and they are good.  By next week I will have an appointment to see the bone marrow transplant team at St Vincents Hospital. Next week’s Bendamustine could be the last one, unless the transplant team want more.

Things get interesting once we start the transplant ball rolling. “Several” weeks of 5-days-a-week chemotherapy to “condition” my bone marrow, 6 weeks in hospital post transplant, 5 months recovery at home… and that’s the best scenario. I wont be out-of-pocket for the transplant, but commuting and accommodation are another thing.

There is a flip side: the transplant team may decide that I’m not a viable transplant candidate, and the recurring abscess will be a factor in that decision.  (Oh, and I’m off IV Ertapenem, and back on orals, which makes me feel just that little bit liberated.)

B3 minus 1 day, and counting

My body has been tolerating the Bendamustine very well.  My third cycle is coming up tomorrow.  My sister is here to act as my allergic-reaction “spotter“.  To everyone who has helped so far, you have my deepest thanks.  The bone marrow biopsy is booked in for 21-Feb, to decide if we (a) keep on with the Bendamustine, or (b) stop, and look for another drug.

B2 minus 4 days, and counting

Yesterday I had an appointment with the microbiologist, to see how my abscess is going, and decide whether or not to continue the IV antibiotics, particularly when faced with another dose of Bendamustine next week. Continue reading

Priorities

I have dozens of open source software projects, in various stages of development.  I have three wood working projects waiting in the shed to be finished. I have phasmid populations studies I haven’t written up yet.  I have  four book reconstructions that I haven’t finished.

If you had 6 days to live, what would you work on? If you had  six months? Thirty years?

For me, my mind never stops.  It’s always coming up with ideas.  There is always software to write, there are always things to make with wood (and power tool therapy).  So, faced with a body that is failing, and a mind that isn’t, what would you work on?

The answer is: work on something you want to work on, you will anyway.  Work on something personally rewarding, or personally useful.  It turns out, the time limit is almost entirely irrelevant.

I’m working on a major release of Aegis, but also pecking away at other software projects, as brain capacity and haemoglobin permit.

I work on bug fixes and feature requests for my OSS projects if I feel like it; but that’s how OSS works.  Send me a patch, on the other hand, and I’ll integrate it the same days as I get it.

“Start a new project!” — Robert Collins.

Oops, yes, I did this, too.

Treatment

On the 11-Dec-2012 we start a third  chemotherapy sequence, this time using Bendamustine and Mabthera.  The list of known side effects of Bendamustine is very long.  What it will do to me is unknown, except that I will be allergic, and we will treat the symptoms and keep right on using the drug, because it’s my best bet, right now.  The treatment regimen has 2 days on and 26 days off, times 4 cycles.  In what looks like an emerging pattern, the Bendamustine isn’t on the PBS, so once again I am paying for a chemotherapy drug out of my own pocket.

We decided to start the chemotherapy now, rather than wait until after christmas.  My preference is to be doing, rather than waiting, even when doing will be confronting.  To procrastinate, to do nothing, is to choose to die.  I choose the option with at least a chance of living.

I accept this gift.