Wondering what to make of life before the Necessary End

Let’s assume I do chemo. And let’s assume it starts in the early days of January. It should be finished by the end of May. It will then take some time to get over the immediate effects of the chemo, notably the fatigue.

Chemo may, or may not, kill the cancer cells. For the sake of this discussion, let’s assume that all the ovarian cancer cells are deemed to be gone. (Bear in mind there is no way to *know* they have gone; the CA125 blood test will merely be an indication.) Let us further assume that the breast cancers have not got any worse and that I’m not (a) in hospital getting more bits chopped out and (b) not doing any serious drugs for the breast cancers.

So let’s say that, by early July, I could do something interesting and useful. Maybe even fun. The period starting in July will hitherto be referred to as Period X.

Period X will be of uncertain duration. Period X ends when the cancer recurs. The chance of my cancer not recurring is somewhat less than the chance that I could holiday on Mars or pursue a successful career as an Olympic gymnast.

According to my gynaecological oncologist, 50% of women with ovarian cancer have a recurrence within 2 years of diagnosis. Twenty-four months minus 2.5 months that have already gone by minus 6 months chemo = 15.5 months before first recurrence. Alternatively, a study comparing various treatment regimes had a median disease-free time of 16 to 17 months. That puts Period X at only 7 or 8 months.

So the average Period X might be anything from 7 to 15 months. For me it may be less. It may be more.

After Period X comes the first recurrence of the cancer. When the cancer recurs, the second-line treatment is another round of chemo (I haven’t even 100% decided to do a first line of chemo). (An aside: I heard today about a woman who is doing her fifth line of chemo treatment. That is, she had chemo, the cancer recurred, she had chemo, the cancer recurred, she had… five times.)

So Period X starts after the first-line chemo ends and before the cancer recurs. It is therefore likely to be my best time until my necessary end.

Therefore:

1. I want to be able to do something good during this time. Like travel. Therefore, I need hair. Therefore, I want no hair loss. Therefore, I won’t do Taxol.
2. I should start planning what to do in Period X now.

Follow up: real-life stories of how long Period X has been for other women with Stage 3 Ovarian cancer.

It seems there is a vast area of study around whether sick people should be told that they’re sick. And, more precisely, whether people with “life-limiting illness” should be told how limited their life might be.

Without a shred of doubt or ounce of wavering, let me make it clear that I want to know. I want to know everything I can learn about this cancer, what it is doing to me, how it will be treated, and, yes, how long I’ll live. And I’ve been spending a lot of time researching those things.

I need to have a reasonably good idea of how long I’ll live because:

• I need to manage my money. On the one hand, I don’t want to run out. On the other, I want to maximize quality of life, and that often involves restaurants, aeroplanes, books or wine. And gadgets! And they all take money. So I need to know how much I still *need* to earn. I need to know when I need to sell my investment house that, for a long time, I’d seen as my superannuation. Indeed, I need to know when I can call in the paltry super I’ve got (apparently you can claim it if you’re expected to die within a year).
• Tied up with the need to manage money is the need to make decisions about medium-sized purchases. Should I buy another car, or assume the present one will last another year or 3? My house needs some major repairs. Should I get them done? I have a lifetime supply of high-heeled shoes, but now I’ve lost weight I have no really good business suits that fit. Should I bother buying some or make do with the present floppy ones? In the past, I’d make decisions about when to do such things based on an expectation of continued income. So I need to know how much I still *can* earn.
• I don’t intend leaving any of the good booze for you lot to drink. But I don’t want to go on a bender, either! So the question is: at what rate can I–or should I–drink the good stuff?
• I have a responsibility to my clients. In some cases, I’ve created tools used by hundreds of people. I can’t just keel over in the middle of a project that could affect many people. It wouldn’t be fair. I have to be able to give reasonable promises to clients about what work I can do, and in what timeframe. (Perhaps it would help just now if I used more time working and less time researching information for this blog!)
• I have to manage relationships with family and friends. It’s already harder to manage those relationships than you’d think. Probably likely to get more complicated as time goes on. (Probably an issue for discussion another day.)

Three cheers for Tim Berners-Lee! I’m determined to be the most knowledgeable cancer patient in town (well, except those patients who are themselves medicos, I suppose). Without the world wide web, I’d be stuck in university libraries learning about my disease. There’s a mountain of information available on the web about cancer, its treatment and prognosis, and I’ve been studying hard!

I’ve collected lots of brochures and pamphlets, most produced by the Cancer Council of Victoria. These are useful, but they are necessarily broad-brushed, incomplete, often euphemistic to the point of silliness, and at times come near to patronizing. They offer little hard data and could never be accused of being forthright. But, I suppose they must cater for a broad range of information needs, and not everyone will want the kind of info I want.

In spite of the vast number of web sites dealing with cancer, it’s hard to get the kind of information I want.

First, I avoid sites that appear to have been created by the drug companies, those that offer little more than opinions from the public, and any site with Google ads sporting sensationalist tags like “lose 10lbs in 2 weeks” or “how I cured x by buying y”. These, I think, are probably not to be trusted.

What’s left is two kinds of information: information for the general public, and academic publications.

Information for the general public is spotty. The best I’ve found is Cancer Help UK. This is the ‘public’ face of Cancer Research UK. The Cancer Help UK site is unusual in that it provides statistics for the average person, and discusses topics that other sites shy away from (ie anything that constitutes “bad news”).

But information designed for the public is generally not very detailed. For that, one needs academic papers.

Reading academic papers is hard because they’re not generally available for free on the web. While the lovely State Library of Victoria offers members access to lots of online journals, it does not include access to any medical journals.

While I really want to learn, I draw the line at buying access, where prices can be around $US60 for access to a single article.

So I’m largely stuck with reading abstracts only, such as those from PubMed or using the US National Cancer Institute’s site, which tends to be a bit messy (perhaps it tries to do too much in one place), but is a good way to get overviews of academic research.