Wondering what to make of life before the Necessary End

Tomorrow–rather, later today–I’m going back to see a psychologist at the hospital.

I’ve seen her twice already: once before I went into hospital and once last week, unplanned, when I got impossibly upset at the thought of chemo and fell to bits.

Aim for this visit: how can I get my head around the idea of submitting to chemotherapy?

I have a choice, you see. To chemo or not to chemo: that is the question.

Chemo is a Faustian pack with the devil:

• “I’ll put my life on hold for 6 months and put up with all the side effects.”
• “And you willl….” What exactly? Give me another year or so of life. Maybe. Half of all women with ovarian cancer have the disease recur within a couple of years of diagnosis. So there’s a 50:50 chance that 6 months of chemo will buy me 18 months of disease-free life. I might go through the hell of chemo and discover it didn’t work at all. Which half will the devil put me in? Would you give up 6 months for a 50:50 chance of 18 months?

Some of the side effects last for months or years after treatment ends. BUT I MIGHT NOT LIVE THAT LONG! So I might not out-live the side-effects. What kind of life is that?

I think I know in my bones that the better solution is to do the chemo; but I just can’t get my head around doing it.

I was reminded today that the the psychologist I’ve seen at the hospital told me I’m a control freak.

They were not her words, of course. But it’s not an unreasonable translation.

Possible reactions:

• I needed a professional with a PhD in psychology to tell me I’m a control freak? Geez! Tell me something I don’t know!
• It’s now official. I’ve been saying it for years, but now there’s confirmation from a professional: I’m a control freak.

(at least I admit it!)

Today was the post-surgery follow-up visit with my surgeon. Six-and-a-half weeks since surgery; 5 weeks since I got out of hospital.

She thinks that all is going well, which is exactly what I expected.

I can probably look after my own wheelie bins from now on. And, for even better news, I can abandon the damned anti-embolism stockings that I’ve worn since the day I went into hospital. Oh, the little joys of life!

I can count on the fingers of one hand the number of times I’d seen a medical practitioner in the decade before this cancer rollercoaster started.

Now, I’m surrounded by medicos, none of whom I knew 3 months ago, and it occurs to me that it may help to identify them:

• General Practitioner (GP). I went to see her on 2 October 2009. In retrospect, that day changed my life irrevocably.
• Gynaecological Oncologist, aka the Surgeon. She slices and dices. Great person.
• Breast surgeon. She punches holes in people, which hospitals say will cause no pain, but which actually hurts like hell.
• Breast care nurse. This woman works for the breast surgeon. She rings me once every week or 10 days just to see how I’m going. She’s really practical and helps out with advice about all kinds of things. One of my favourite people.
• Medical Oncologist. He does chemo. Well, no, *he* doesn’t do chemo: he prescribes chemo for others.
• Oncology Psychologist. She sits and listens and tells me what to expect. Who would have thought I’d end up seeing a shrink? And what kind of toughness do you need to be a psychologist that specializes in oncology patients?
• Social worker. Not 100% sure what her role is.
• Chemo room nurses. I’ve met several of these women, even though I haven’t started chemo yet.
• Squillions of radiologists, radiographers, technicians, vampires, nurses and others, some of whom I remember fondly for having been incredibly kind, even though I knew them for only a minute or two.

The last time I wrote here, four months ago, I was 36 hours away from doing my third cycle of Carboplatin.

Life has changed a bit since then, and not much of it has been good news.

1. 25 January 2011: Yes, I can go on my holiday

   My gynaecological oncologist says that yes, I can go on my grand holiday at the end of February. A friend is going to come with me, and he came along to talk to the doctor. I had to pay for the airfares by 26 January, so I did that when I got home from the hospital. Great news!

2. 25 January: Hip and back pain

   Through late December and January I was getting pain in my hips and back. Not every day. I was told it was probably joint pain. That didn’t make the pain go away.

3. 27 January 2011: Allergic reaction to carboplatin

   I went for the third cycle of Carbo. After the usual anti-nausea, anti-vomiting drugs, the nurse started the carboplatin infusion. About 10 minutes later I kind of, err umm, felt kind of, um, strange. Not bad, not ill, just odd. I decided I’d get up, so I put down the foot stool on the big chemo chair. I was just about to stand up when the palm of my left hand started itching. I was scratching it a little when two nurses appeared before me. I hadn’t even looked up, and this was only seconds after I began to feel odd. Nurse 1 asked if my palm was itchy. Even as she asked, the other palm started getting itchy. Nurse 2 was turning off the carbo. I couldn’t decide if I was going to throw up, feel OK, faint, or what was happening. Another minute later, I was leaning forward, belabouring every breath. I could still breathe, but it wasn’t straight-forward.

   Then it seemed like all hell broke loose.

   Nurses and doctors came from everywhere.

   One nurse went off to get a bed. Another nurse wrapped my arm in one of those blood pressure things that automatically measures blood pressure every so many minutes. A third nurse came brandishing an oxygen mask, but I still thought I might throw up, and couldn’t cope with the idea of a mask over my face. So she just stood there and held it near my face until I got use my right arm back from the blood pressure nurse and could hold the mask myself. Another nurse had an oximeter and stuck it on a finger. My left arm was still hooked up to the IV, but by now the carbo had been turned off and some kind of antihistamine was dripping into me.

   I moved on to the bed. A few minutes later there was great consternation about oxygen levels. Someone was told to go and get nail polish remover, but I’d read enough to know that polish doesn’t affect oximeter readings, but that my acrylic nails may. So I told them I had acrylic nails. A nurse ripped off my shoe and sock and put the oximeter on a toe. After a few minutes they seemed to be satisfied with the oxygen levels.

   I realized I was having an allergic reaction to the drug, though no-one actually said that. What was strange was that while all of this was going on, I felt quite removed from it all. Not worried. Not panicked. It was as though there was a scrim, or a light mist, or some peculiar distance between me and the doctors and nurses. I could hear them, I knew who was there, I could respond when they asked me to do things. I knew that nail polish remover wasn’t going to solve the oxygen problem, and told them about the acrylics. But through all this I was kind of fazed out, not-quite-all-there. Very peculiar.

   After a while (half an hour maybe? it was hard to tell) I kind of ‘came round’ and could think and talk ordinarily. The main nurse said that I just had to sleep off the drugs they’d given me, so I rolled over and went to sleep for 2 or 3 hours. When I woke up, there was some concern about whether I was OK to drive home, but I went for a bit of a walk, got something to eat, and then checked back in with the nurse. Yes, she said, you’ll be OK to drive.

   It was a very weird day.

4. 28 January 2011: No more carboplatin.

   Back to the hospital to meet the medical oncologist.

   No more carboplatin.

   This was a big blow, because it is the main drug used for ovarian cancer. In some cases, they can try to de-sensitize you to the drug by taking all day to give increasingly stronger doses. But I was told that, given the severity of my reaction, it was unlikely that I’d get through another dose.

   So what’s the plan now? Cyclophosphamide. It’s not administered through an IV. It’s a DIY drug, three little pills every morning for two weeks, then two weeks off. What could be easier?

5. Late January/early February: Cyclophosphamide

   Cyclo turned out to be almost as vile as carboplatin. I have never been so weary and tired and fatigued and exhausted. I spent days and days bored and frustrated lying in bed. One day I got up and decided to send one email. I only had to type one sentence. I got half way through the sentence and thought ‘I have to go back to bed now’.

   But I’m going on overseas at the end of February. I have a session to give at a conference and then 4 weeks of travel. How can I possibly do it in this state? I just didn’t know.

6. Late February: Off overseas, bearing cytotoxic drugs

   Cyclo is two weeks on; two weeks off. I was due to start my second cycle the day before I left for overseas.

   The doctors and nurses were very helpful in accommodating my trip. I started the second cyclo cycle a day early, hoping that the worst of the effects would be over by the day I had to give my conference session. I got lots of helpful advice and what seemed like a small pharmacy to take away with me—along with a letter to anyone who cared saying that I was holding these drugs legitimately.

7. Late February/March: Overseas

   This was to be the last grand trip. And it was very, very grand. We flew first class. Stayed at the very bestest hotels. And had a wonderful time. Travel seems to produce sufficient adrenalin that I didn’t suffer from the cyclo as much as I had the first time round. And, we’d reduced the dose a bit, which may have helped, too.

   But… the pain in my hips and back got worse and worse. It started about 4 or 5 days after leaving home, and continued for the rest of the trip. One day we left the hotel expecting to go exploring the city. I felt like I could barely walk. We made it to the first corner where there was a cafe, and I suggested we stop for a break, after all of maybe 100m!

   I’m glad I did the trip. I don’t care that it cost a fortune.

8. Late March: Welcome home!

   I was away for nearly 5 weeks. Ideally, I should have started the next cyclophosphamide cycle a few days before I got home.

   So I had agreed that, since my flight got in at 7am, I’d go to the hospital first thing for a blood test, then go back later in the day when the results were available to see the medical oncologist.

   Not a fun day to look forward to as your welcome home from a long trip.

This week:

1. Monday: Blood test at Royal Women’s Hospital
2. Tuesday: Medical oncologist at Royal Women’s
3. Wednesday: Gated Heart Pool Scan at Nuclear Medicine department at Royal Melbourne hospital
4. Thursday: Chemotherapy at Royal Women’s
5. Friday: Back to Royal Women’s to pick up some medications
6. Monday: CT scan at Freemasons Hospital
7. Tuesday: See the gynaecological oncologist

It never stops!