Tag Archives: Knowledge

Hair Today, More Tomorrow

Hello everyone …

I’ve been really enjoying the shaved head look this summer! Small children are puzzled by me but just stare quietly. I am sure I would have asked my parents, but in the ’60s a bare head of any kind was cause for comment! Grown-ups ignore it.

Sometimes it really doesn’t feel any cooler than when I had hair, but when the breeze comes it is nice and refreshing. Now that we are getting cooler evenings I am back to wearing baseball caps and other head gear to keep me protected. Never a very warm-bodied person I find I am generally a bit colder, even on warm, sunny days. This is probably because the blood cells are working overtime and can’t be doing everything they should.

Here is what I looked like before all this started.
Current Look
This is how I look now. Yes, that is Glenlivet in the glass – OK for the period between chemo Cycles.

Apparently hair often comes back curly, with a different texture and with a touch of some other colour – commonly a lilac/purple tint!

I am into Cycle 4 now (just over the half way mark) and starting to feel a lot more fatigued. This is a bit frustrating as I have generally felt around 80% normal so far. I stopped the steroids, which I believed was a good thing, but the substitute anti-nausea drug had some unpleasant side-effects so I may revert back. There are a few more chemo related things kicking in which are a bit boring – sore gums, kind of a bad taste in my mouth and some nerve damage in my feet. However, I suspect from the questions I am asked that things could be a lot worse.

It is now indisputably apparent that while some people are as inquisitive as I am about the process, the illness, the treatment etc others very much take a head-in-the-sand approach. Neither side understands the other. The nurses have to sound out each patient before giving information, so that they answer questions appropriately for the person involved. I think that most of the nurses, as a result of their training, are of my mindset but they are conscious that many patients need to be protected on the knowledge front. My sense is that despite being asked direct questions the doctors themselves hold back information or try to sugar-coat it from habit. This is frustrating in the extreme and I have had to do a lot of my own research.

Travel and Reading
We had a lovely visit with our friends Janet and Chris a couple of weekends ago. They live about three hours east of Vancouver in Merritt, a small town where the pace is slow and the weather very enjoyable. I was delighted to find that Chris had been struggling through Thinking Fast and Slow and has obviously picked up much more from it than I have. He had all sorts of things to discuss about it but admitted that it was heavy going. I understand President Obama has also read it – would love to hear his views but don’t want to distract him from other more pressing matters at hand!

We normally have one ant hill location in our garden but this year we had at least two others as well. I understand from a friend in Perthshire that the ants have been particularly bad there as well. Something is up!

On the two nights after chemo I sleep in the spare room as I am totally wired with the drugs, don’t sleep well and am up often! The other night I heard a lot of banging around and it sounded as if someone was trying to break in either to our house or a neighbour’s house. I looked out of the window to see two baby racoons and a mother racoon (well, it might have been a father – it is 2012 after all) playing on my hammock! They were having a ball and causing it to swing around and bang the cross bars against the frame. Their hearing is very keen. I only pulled back the curtain but they noticed me watching, but figuring I was no danger they just kept playing.

Thanks for the flowers and gifts and encouraging emails. It always great to hear from you but particularly so these days.



Round Three

Hello folks …

Thanks to those who have written asking what is going on. Quite a bit, as it turns out.

Things have been going fairly well for me recently. The tiredness is getting a little more intrusive but still nothing too much to handle, all things considered. Cycle 3 is now finished (I am half way through) and I am in an “off” week.

I had two very long days again with Cycle 3 (10 hours and 8 hours) but I snooze away some of the morning and then read.

One thing the Cancer Agency tells you up front is “Don’t be upset because every person you interact with checks your name and asks for your birthdate. This may be within seconds of someone in the same room having asked you the same questions.”

It is true! This is part of the security system to make sure you get the right drugs, answers, blood tests, etc.

I finished a Wired Magazine – interesting article about the new data centre being built by the US in Utah, where they will store all emails, text messages, etc intercepted within the US (not strictly legal at this point, as I understand it) for Homeland Security purposes. Much time and effort going in to breaking encryption up to very high levels but they have not sorted that out yet apparently. I would think that it is a Good Thing they have not yet figured it out. If they end up breaking the encryption then everyone else will be able to do so within a very short while, and then where will we be?

I read some years ago that sensible terrorists don’t send emails, they simply take turns updating drafts using an online email server, so the information never flies through the ether.

I have been sidetracked by Johnson’s Life of London, by Boris Johnson, the tow-headed Mayor of London. It bowls along, full of fun facts and interesting observations about the city, its population over the millennia and the ingenuity, diversity, creativity and enterprise of some of the key people who lived there. Johnson’s style is akin to that of Keith Richards, whom he admires greatly (as do I, having now almost finished Life) and one can imagine him enthusiastically holding forth in person at the drop of a hat.

I learned quite a few new things not only about London but about the linguistic development of England in the first 1,000 years AD. Being raised in Scotland, where the French are always present somewhere near the surface, I was surprised to learn that French had indeed been the lingua franca in England for several hundred (different) years. Well, I guess that’s where the phrase comes from after all 🙂

I finally finished The World Without Us. A really interesting book, well worth dipping into if you don’t have time to read it cover to cover.

I bought an actual physical copy of Thinking Fast and Slow by Daniel Kahneman around Christmas but even before I was so rudely interrupted by this OC stuff I was having difficulty getting into it. Kahneman is a Nobel Laureate who worked in behavioral psychology, behavioral economics and happiness studies. I read a couple of interesting reviews and heard him on the radio so thought I would dive in. Amazon’s main summary is:

Two systems drive the way we think and make choices, Kahneman explains: System One is fast, intuitive, and emotional; System Two is slower, more deliberative, and more logical. Examining how both systems function within the mind, Kahneman exposes the extraordinary capabilities as well as the biases of fast thinking and the pervasive influence of intuitive impressions on our thoughts and our choices.

It all sounds pretty neat, and useful if you are aware of your own normal thinking processes and want to influence your decision-making in some situations by combining the methods. However I found the writing was like a scientific journal intended for academics rather than the general reading public. I suspect this book may be the Brief History of Time of the current era. Bought by many, read by few.

Side Effects
There continue to be very few physical side effects so far. I have started to experience neuropathy, which is reflective of damage to the nerves in your extremities, caused by the Taxol. I had about five evenings of tingling feet and fingers. It has gone away now and will generally stop altogether when the chemo stops, although it can get a lot worse for some people as the chemo progresses.

I changed my anti-nausea drugs from a steroid to a non-steroid medicine. I have to take it for longer, and it has some unpleasant side-effects if not properly managed, but I am hoping this will have a less negative effect on my brain. We shall see …

I have had fairly in-depth experience with the BC Cancer Agency over the last few years and it is clear that the interaction with this particular patient has not been as helpful as with Velda or Alex. We are not particularly taken with the oncologist assigned to me. While she may be very well qualified she does not have a good “bed-side manner”, is not communicative and tends to shrug off just about everything we tell her. She did admit that, while Vancouver has the best results in the world for OC, the treatment protocols are arbitrary and they know very little about the disease.
“We don’t know if six Cycles are better than four, or the other way round.”
“OC is very unpredictable.”
“We don’t know why there are so few people diagnosed at Stage 1 or 2. It may be that there is a different mechanism at work.”

This shows an open honesty about the process but getting any information has been like getting blood from a stone and it makes it very difficult to make informed decisions. I have requested a “second opinion” from a different doctor on the topic of chemo brain. This may be read as code for starting the process of changing the assigned oncologist. Having said that, I can call the Cancer Agency and speak to a nurse 24/7 and during business hours I can call the pharmacy or a counselor or any of their other services. If I end up leaving my name and number I am called back very quickly. Quite impressive.

In other news, Alex continues to experience difficulties related to a still undiagnosed inner ear problem. We hope to see a specialist sooner rather than later about that.

My parents recently sold their house on Vancouver Island and we are assisting them in looking for a place to live in the Greater Vancouver area.

All in all there is a lot on the go! I realise that I have not answered emails from many of you and to be honest I find it difficult to get to much as I am easily distracted and quite slow at everything. However, I love hearing from you and WILL get back to you one day in the not too distant future.