Wondering what to make of life before the Necessary End

Bag lady goes

Ever since my left leg started swelling, back in June or July or some such, I’ve been massively restricted in what I can wear.

No skirts. No high heels. No smart suits.

So I came to feel like a bag lady.

Last Thursday I was going out to dinner to a very very smart restaurant with an old friend. I really didn’t want to front up looking like a frump.

I scoured the wardrobe and found a suit that used to be too small on top, but too big on the bottom. Since my body shape has changed substantially since then, the jacket was now too big (but wearable) and the pants more or less fit.

I got out one of my nicer silk shirts.

Then I went through my Imelda Marcos-sized shoe collection and managed to find some high heels that didn’t come over my instep at all. I squished my feet into them. They hurt like hell, but I only had to walk from car to restaurant and back, so I figured I’d survive the night.

It felt so nice to be dressed decently, even if I know I’ve become a weird, pear-like shape.

Bag lady returns

Even as I got dressed up for dinner, I was conscious of one small, strange thing: the right shoe seemed tight.

How could that be?

Within about 36 hours it was clear: my right leg has started swelling, too.

Shit!

I’ve developed all kinds of little ways to accommodate having one gammy leg. I don’t know about two! After a day or two, it was quite difficult to get up and down the stairs at home. Putting on socks just got harder. And both legs have started to hurt, inspite of the increase in pain killers.

So I’m back to being a bag lady!

I’ve started seeing a physio to try to drain the fluid out of my left leg. I see her again tomorrow. I’ll be interested to see what she says about having two swollen legs.

This morning I went to the physio. As I waited, the physio came out with the previous patient. The patient was wearing a classic chemo scarf, and I overheard them making her next appointment. “So when’s your next chemo session?” “Next Thursday” and so on.

I am really impressed by people who made the decision to do chemotherapy that would cause complete alopecia. I really am. I just couldn’t do it. I can’t justify that decision, made way back when. I can’t explain why. I have no logical, rational reason. I just couldn’t do it.

Now, nearly 2 years later, my chemo is all over. It’s a week since I told the medical oncologist that I wanted no more chemo.

I know nothing more about the woman I saw in the physio’s waiting room. I don’t know what kind of cancer she has, how long since diagnosis, or how she’s doing. But seeing her, and hearing her make her next appointment, forced me to re-consider whether I’d made the right decision about stopping chemo.

Yes, it was the right decision. I still feel good about it. I haven’t for a single moment felt any regret, or wanted to reconsider.

I worked out I’d done 52 weeks of chemo:

• 6 x 3-weekly cycles of Carboplatin last year
• 2 x 1-weekly cycles of Carboplatin this year, before I had the allergic reaction
• 3 x 4-weekly cycles of Cyclophosphamide
• 5 x 4-weekly cycles of Caelyx

I’d given it a go. I’d done enough.

It’s getting tough.

The new painkiller regime has given me a new lease of conceptual, intellectual life. So I can sit at my computer and work on my grand project, which had received little attention over the last couple of months.

But it’s getting harder and harder to walk, get about, even to get up and down the stairs at home.

I’m not much of a poetry fan, but I thought this stanza from Tennyson, sent to me by a friend, captured some of the spirit of these days:

Though much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven; that which we are, we are;
One equal temper of heroic hearts,
Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.

Alfred, Lord Tennyson (Ulysses, 1833)

People in the medical industry and IT

Since my diagnosis two years ago, many doctors and nurses and technicians of various kinds have asked me what kind of work I do—or did.

The description involves mention of IT. Nine times out of 10, the response is “Oh, I don’t know anything I about computers. I don’t like them.” Or something similar.

With perhaps one and a half exceptions, not one medico has said anything enthusiastic about information technology, or suggested that they use IT in anything but rudimentary ways.

The exception has a couple of computers at home, a network, and a Kindle. The half an exception is a person interested in having a Kindle, because she’s a long-term member of a book club. But she says she struggles to look up anything on the web, so I’m not sure she could cope with the networking or 3G capacity of a Kindle. (As it happens, both of these are truly fabulous people who have been extraordinarily good to me for a long time).

Using IT in the medical industry

Within the medical industry, the primary mechanism of communication is the fax and the snail-mail letter.

Pathologists fax reports from blood tests, CT scans or other diagnostic tests to the hospital and the relevant doctors’ offices. Fax! So very 1988!

Offices of the various hospitals, GP, specialists, physio and palliative care people write letters to one another. You remember those, I’m sure: typing on pre-printed letterhead that is put in an envelope with a stamp.

On one occasion I was talking to a specialist’s receptionist and wanted to email some information to her. She asked if I could fax it. I told her I threw out my fax machine about 5 years ago after everyone else stopped using them. She faffed around and eventually came up with an email address. I suspect it was a private email address, and clearly one she did not use often.

There are some minor exceptions:

• Within Royal Women’s hospital, a doctor can look up an online database of blood tests that were done within the hospital. As far as I can see, there is no capacity to add results of blood tests done elsewhere (and most of mine are done at a local pathologist’s outside the hospital). So the record, from the patient’s point of view, is incomplete.
• Within Royal Women’s hospital, the images of scans like CT scans are stored in digitized form. But the doctors can not, as far as I know, view the scans from the consulting room. In any case, the computers in consulting rooms have ordinary old 1280 x 1024 4:3 low-res monitors. You couldn’t interpret a scan with that kind of low resolution.
• When meeting with my surgeon, she has more than once looked stuff up on the internet, generally Wikipedia, to show me where I might find information about drugs, procedures, disease and so on.
• My GP’s office has a system that automatically sends an email reminder the day before a consultation. When I asked the GP about this, she said she didn’t know how it worked, and that she “didn’t like computers”.

So, we have an industry that communicates using fax and snail mail, that is populated by people generally uninterested in information technology.

I’m not suggesting that this is a good thing or a bad thing. It just is. Indeed, I might argue that I’d rather, say, the medical oncologist spend her time reading about the latest drug trials than learning about the latest networking software.

National Broadband Network

Into this mix Australia is rolling out the National Broadband Network.

NBN Co, the government and the media all assert that the NBN will support the practice of medicine, occasionally referred to as ‘e-health’, ‘telehealth’ or ‘tele-medicine’.

The Department of Broadband, Communications and the Digital Economy has kept lots of consultants busy confirming this:

• NICTA reported on Telemedicine in the context of the National Broadband Network in June 2010
• Acccess Economics reported on Telehealth for aged care in November 2010
• Acccess Economics reported on Telehealth for veterans in November 2010
• The Allen Consulting Group reported on Quantifying the possible economic gains of getting more Australian households online, substantial portions of which concerned ‘telemedicine’, in November 2010

NBN Co itself touts the use of the network for medicine:

The NBN is infrastructure that will enable improvements in service delivery and productivity in health and education. High speed broadband will facilitate the transfer of medical images, the holding of remote consultations by doctors and the provision of distance training for medical professionals. Broadband services also have the potential to allow people to stay in their homes longer by providing improved access to medical professionals, or medical monitoring services.

NBN Co FAQs page

And all this is going to happen with people who are communicating with faxes and snail mail, don’t like computers and struggle to provide an email address!

The NICTA report explicitly identified barriers to adoption of telemedicine:

• Regulatory
• Innovation Capture
• Supply/value chain
• Health systems
• Pervasive access
• Interoperability
• Usability

The report discusses these barriers in some detail.

But nowhere, that I can see, does that report, or others, raise the fundamental issue: medicos, as I observe them, have little experience with information technologies, poor IT skills and no apparent interest in IT.

And what prompted me to think about this?

For some time now, I’ve been vaguely amused by the mis-match between what I see of people on the ground and the kind of medicine delivery that government tells us the NBN will bring.

But last Friday I saw at first hand an extreme example of what’s wrong.

I had to go to the GP for some paperwork. The GP I’d previously seen has moved on (a great pity) so I saw one of the guys that (I think) owns the practice.

He had to fill in a form about 4 pages long. It required information about my diagnosis, treatment, current drugs and all the people involved in my care. I provided most of the information as we went, and some he took from my medical file.

To do this, he used an application that appeared to have been written specifically for the purpose of creating and completing the form.

The application provided a ‘template’ to fill in, and appeared to be linked to one or more databases. He could choose from a pre-existing list of doctors, to avoid typing their contact details. And he could choose from a list of drugs that showed, for example, proprietary and generic names, the available packaging for each drug, and the rules under which it could be prescribed.

To complete this form required typing perhaps a hundred words of free text (notes on the diagnosis, names and addresses of a few doctors that weren’t available from the drop-down lists).

And, it involved clicking drop down lists and choosing items from dialog boxes, so that the application filled in the appropriate bits on the form.

He had, I think, 6 tries before he got one drug entered to his satisfaction.

There was a table listing all the current doctors and others involved in my care, with one row for each person. He couldn’t figure out how to add a row, so he fudged, pressing Enter Enter Enter Enter to create space to fake it. Needless to say, it didn’t line up properly when printed.

He didn’t seem to know that you can copy’n'paste, so when he typed in the wrong spot, he deleted the text and re-typed.

Needless to say, he used two fingers with many slow, unnecessary trips to the mouse.

It took him over an hour.

It took me an aggregate of say half an hour to get to his offices and back home. I waited 45 minutes in the waiting room to see him. Over an hour watching this painful two-finger activity he probably called typing. Total: nearly 2 and a half hours of my precious, valuable time wasted (you’ve no idea how valuable time feels when you’re running out of it!). I’d reckon he wasted at least 40 minutes of the hour he spent with me.

If this is any indication of the enthusiasm and skill with which the medical industry is going to take up advances in applying IT to medicine, we are all in for a big shock!

Yesterday I met with the breast surgeon.

I’d last seen her six months ago. By then we knew that the ovarian cancer had returned, and would thus be fatal. Treatment of the breast cancers would only have been necessary if there were immediate symptoms to resolve: if one of the cancers had broken through the skin, for example. So, at that time, she said ‘come back in six months’. I made the appointment then, and, time having rocked around, yesterday was the day.

Six months on, things are clearer still. In that last six months, the ovarian cancer has progressed. My CA-125 levels have skyrocketed to around 8,500 (normal is 0-35). I’ve done nigh on 6 months more chemo, and it recently became clear that this last chemo drug, Caelyx, was not working. Both legs are swollen. The swelling is getting worse, it’s hard to walk and is becoming very painful. Any movement or exertion makes me breathless, and that’s getting worse, too. And I’ve decided to do no more chemo, and choose quality over quantity, albeit bucked up by much analgesia.

So the breast surgeon will never get a chance to wield her carving knife.

(As it happens, I never had any intention of letting her do so. At the beginning it seemed easiest to just go along with the flow, front up as suggested, and wait till someone actually asked the question before I said ‘no’. Now, she’ll never have to ask the question.)

Since the breast surgeon can’t do anything for me at this stage, I had considered cancelling the appointment. But I decided to go along, partly because the surgeon and her breast care nurse are good people, have helped me a lot, and, frankly, I like them. It seemed mean to just skip out without saying goodbye.

Six months ago I arrived at her office dressed well, feeling pretty good, planning another holiday, working hard on my project that I’m so keen to finish.

This time, I arrived with grungy shoes, because they are all I could manage. I parked illegally in a permit zone directly across the road to avoid having to walk. I walked as slowly as I could along the corridor, but I was still huffing and puffing when I arrived at her office. My left leg was hurting very badly—I should have taken some more pain killers before I left home, but I hadn’t.

And the minute I hit her rooms, I burst into tears.

It was the sudden shock of contrasting how I felt when I was there six months ago, and how I am now. I suppose I hadn’t realized just how far the slow day-by-day decline had progressed, how poorly I’m doing compared with 6 months ago. And, I knew there would be no point in meeting with the surgeon and her nurse again. This was to be yet another goodbye, yet another loss.

I told her what had been happening to me (oh! how a control freak hates the idea that something just happens!). We agreed that there was no point in considering the need for treatment of the breast cancers. They are a second-order problem. I’ll be gone before they need any attention.

This time, there was no suggestion of ‘well I’d like to see you again in x months’.

This time, she just said “Good luck”.

One more loss. One more step to the necessary end.

I couldn’t bring myself to say ‘goodbye’.

OK, this is weird. Or at least it seems weird to me.

A few months ago, the sugical scar that runs from neck to knees (I exaggerate wildly!) started getting itchy. Mr Google, who knows everything, told me that other people had itchy surgical scars, too. But I asked the medical oncologist anyway. She dismissed it as nothing important. (What’s important to them and what’s important to me differ widely; I must write about that one day.)

The skin around the scar started getting itchy, too. The itchy area spread, almost from hip to hip

The skin is now red and blotchy. The skin seems fragile, thin, almost delicate. While it’s itchy, it seems so fragile that I dare not scratch. (I also desperately want to avoid a female version of men who scratch at their balls in public: never a good look!)

Since I can’t inject the wretched Clexane into either leg, for both now have oedema, I must inject into my abdomen. Into that thin, fragile, itchy, blotchy skin.

So yesterday I asked the medical oncologist about choosing injection sites. And, about what might be causing the thin, blotchy skin.

She said it looked like an allergic rash (well, yes, I knew that).

What seemed weird to me is that she said it’s probably caused by what is going on inside my abdomen, not outside.

So tumours inside the body are causing skin reactions on the outside. Who would have thought?

For some months I’ve been getting more and more breathless.

Various possible causes of this were put forward.

About 6 weeks ago, the medical oncologist decided to find out once and for all.

I had a CTPA scan that showed pulmonary embolisms. “That’s the cause”, they said, and I started the dreaded Clexane, an anti-coagulant.

With Clexane it should, I gather, have stabilized, or got a little better.

But it’s getting worse by the day. Today is worse than yesterday. Yesterday was worse than the day before.

“Perhaps there are pleural effusions”, they say. Is there fluid around the lungs, preventing them from doing their thing? Yesterday I had a chest x-ray to see. Answer: no.

So we still don’t know what’s causing this. Today I can’t walk from one room to the next without (puff) running (gasp) out of (puff) breath.

I suspect they’re at straw-clutching phase. “Maybe it’s the ascites”, they say. The dreaded ascites has returned, though is not (yet) serious. Perhaps it’s pushing up against the diaphragm preventing me from breathing properly. So on Monday I’m going to have that drained, to see if that helps.

This isn’t (puff) fun any more.

The breathlessness is really getting me down.

Tonight was the last straw.

I went to dinner to a restaurant. Once I got there and settled down, I was fine. But getting ready, walking outside, getting in the car, walking into the restaurant, walking to the table and so on was all too much. Huff, puff, huff, puff.

Came home from dinner and googled: could I find info about breathlessness for cancer patients?

Wow!

It turns out that there is serious, research-based, practical advice on how to breathe, how to walk, how to stand. There’s a fair bit of overlap between these three sites, but I found them all useful:

• My favourite cancer website has some good info on breathlessness
• Even better is the info from Macmillan on Managing breathlessness.
• Best of all, I found really useful, practical tips from BreastCancer.org.

  In part: don’t walk and breathe at the same time. Rather: breathe in, walk, stop, breathe out. And: breathe in, then breathe out slowly with pursed lips. I just went downstairs and back using these tips. A hundred times easier than earlier this evening! Who would have thought such little things could make a big difference?

Since Day 1 I’ve been getting useful information from these three sites. I don’t know how I’d cope without them

Shauna Kelly, author of this blog passed away peacefully at 8.36am on Wednesday November 16 at the Royal Women’s Hospital.