So far, so good

The pain management strategy seems to be working after a really dreadful night of experimentation to reduce the sharp pain to a dull ache. I've still got all kinds of aches and pains up and down the arm, leg and feet, but nothing sharp. And that's a great improvement from the last time, when I was bedridden in agony at this time. Of course I am not going to assume that this will hold, but just want to report that it seems to work.

Another thing that definitely works is constructive distraction. My aunt Lenke, who first taught me piano, told me that the best pain killer was making music. I can confirm that. I tried it yesterday. When the pain first hit, I took a panadine and hit the keys. Worked wonderfully. Bang, bang. Hit for hit. I could hardly see the page, because my eyesight was also affected, but hey, those fingers were moving and it sounded like beautiful music to me........

Of course I couldn't do that at midnight, when the sharp knives started to carve out pieces of my toes, so the strong Panadine 15 was on order. But in the end both worked, so I am grateful for that.

And of course, the best panacea is sleep. Deep sleep, if you can get it. I am going back now for my rendevouz with the sleep fairy. Just wanted to let you know that the new pain management strategy seems to be effective and worth a shot. Panadine when the first twinges of pain appear and slowly build up to Panadine 15 or Panadine Forte. So far, so good for me.

5 down one more to go

Sorry I've been quiet, but no news is good news. With this Taxol I had almost normal energy for over a week and I've just gotten on with life and had a good time hanging out with my friends and all that. But, all things pass and we are back to chemo time.

Yesterday I had the second dose of Taxol. When I had the first one the nurse reassured me I would be fine, because allergic reactions usually occur with the second one. Well, here I was coming up to the second one and I must say her words have stuck. The day before, the blue day, had the added stress of being afraid of 'the reactions'.

I needn't have worried. There were no reactions, but it was a really busy day, it being the day before Australia Day, the national holiday of Australia, when everyone has a Barbie (BBQ) and waves the flag. Actually, it celebrates the arrival of the First Fleet (that brought the first convicts) on 26 January 1788, with Captain Arthur Phillip, whose instructions were to set up the colony of New South Wales. Of course for the Aboriginal population this is a sad day – Invasion Day – when they lost their country. There is ongoing discussion whether to put Australia Day to another day, but that's beyond the scope of this blog.

Getting back to yesterday, because of the approaching long weekend, there were only a few nurses to deal with an increased patient load. So, I didn't get to see my DVDs that I carefully chose at the local library, and they let me go home without my strong antinausea pills. I could do without the DVD, but not having those pills really freaked me out. How would I cope over the long weekend?

Alison, who came back from Queensland in time to ferry me around, came to the rescue and went back for the pills, so I could relax. Now she and her dughter Sally are going to Uluru, but will be back on the 29th to take over from Ildi, who is returning to Hungary that day. Do I feel spoilt? You bet I do.

I am also beginining to be tired. Ildi and I are watching the semifinals of the Australian Open tennis, but the cold front is coming through and I am wilting, so it's beddibyes for me.

I am trialing my new pain management regime, and have taken two fairly mild painkillers with codeine, and will step up to the stronger one tomorrow in the hope that it will take the edge off the pain once the high effects of the steroids are over. As I said before, the Prof thought it was a great idea. However, that means I'll probably sleep through the next three days,\.

So, if I am quiet, don't worry, that means I am off with the fairies doing battle with the Taxol queen (or King). And we know who is going to win that one!

An emotional day

Some days pass real fast, while others have a strange aura and energy. Today was the latter. In the morning I talked with Suky, who told me that our highschool friend Margaret was in the last stages of life. Charlie, as we knew her in school, has been fighting breast cancer for many years. She is losing that fight, but from what Suky told me, she is a winner in leaving us with dignity.

Charlie and I have been close at school, but we had little chance to keep in touch after we graduated, because life kept us a continent or two apart. But we knew about each other through Suky, until we had a chance to catch up in person in the past few years. And I am very grateful to have had that chance.

Suky told me this morning that the last time she saw Margaret, they talked about all of us girls at Camden and our lives and how we kept in touch, etc., and they talked about me. I feel very priviledged about that, because we all know that it was Suky who was responsible for keeping most of us (especially me being in the States and all) in touch over the past - dare I say - 42 years. She denies it, but that is the truth, as Alison and I confirmed it just a few weeks ago. Yes, my English sister Suky and her her family are amazing people (but more of that later).

Getting back to today, my thoughts were fixated on Margaret the whole day. In the morning, on the bus, going to my cancer counsellor, I communed with her, talked to her and said my farewell. I talked about her with the counsellor, and in the afternoon, when I was practicing my piano, I 'played for her' the Mozart variations "Ah je dirais vous Maman", that I know she heard me practice or play at school.

Outside, the cold southerly wind gusted relentlessly, bringing some respite to the heat that is said to increase to 39 degrees Celsius by Sunday. Oy veh!

One thing that I told the counsellor was that Charlie's imminent death made me realise that I am not afraid of dying, but I am afraid that I will have forgotten how to live by the time it's my turn to go. Weep, weep. Kleenex please! So, next week, when I see her again, the spotlight will be on me, how to get me back into life again after the cancer treatment is over. Right on!

After the weepies with the counsellor, I waylaid the surprised Professor in the corridor with a huge hug and asked what he thought about my proposed pain management strategy to take the painkiller early, well before the pain actually starts. He thought it was a great idea, so I am hoping that the next Taxol hit won't be too unbearable. I am also looking around to get some good videos to watch while they are pouring the stuff into me.

The rest of the day went by quite fast. Ildi suggested that I should take a siesta after lunch to conserve my energy, which I thought was a great idea and tried out for the first time today. Well, I think it worked, because it's now after midnight and I am still full of beans.

And later I called my English mother, Rita to wish her a happy birthday. I won't say how old she is (because she has decided to keep mum about it, so people won't look on her like some curiosity), but let's just say that it's well over 80 and she has all her marbles, and she drives a car in London. What's more, she now informs me that she is taking computer classes, but not just any kind of class - she is preparing for the GCE 'O' levels in IT!!! All I can say is that it's quite amazing, but knowing Rita, not surprising. I just hope that I get into that PhD and follow Rita's example of keeping mentally and physically fit and alert well into my Third Age!!! And yes, Happy Birthday Rita Mama and keep going strong!

All in all, it's been an emotionally exhausting, but rewarding day. Does that make sense?

In the present

One thing that happens during this chemotherapy is that it really forces you to live in the present. Even if you plan the sexiest date, the most beautiful adventure, you must be prepared to let it all go, without rancour, and just go with the flow, whatever your body allows you to do. It's very frustrating.

Yesterday was one of the hottest events of the Sydney Festival, an annual gorging of the visual, aural and other senses between 6 January and Australia Day, the national holiday, which is on 26 January. Jazz in the Park was all Brazilian and promised to be an event to remember, where I could start the year shaking my booty, despite my current condition.

Sue C and Ildi and I had made elaborate plans to go early, get a good vantage point, take the bubbly and - well you get the picture. Forget it. The cold southerly winds, the bane of my existence, rushed through in early afternoon and there was no way in the world I could go anywhere, or take the bubbly. Ah well, c'est la vie. 80,000 other lucky people got to go, but not me. Darn it!

This morning, as if to mock me, the skies are blue, my energy level is high and I am just about to go to the gym. It probably won't last all day, but I am so thankful to have periods when I have real energy, just as I did before this whole horror ride began.

I have to say one thing for Taxol. So far, so bearable. The pain was terrifying, not just because it was so excruciating, but because one didn't know how long it would last. But the way I look at it now is, that perhaps if I take pain killers before the pain hits, it may be more bearable. Well, at least I can try. I must say that sticking to the advice I got about taking the anti-nausea pills before the nausea got bad, has proven to be very effective, so I am hoping that this new pain control strategy will also work.

The positive aspect this time is that the oppressive fatigue of the previous AC chemo coctail is absent. This means that next week I can probably try out a casual job someone has offered for me to do in my short windows of energy. Well, at least the intention to try is there. Whether I'll make it is another issue.

Anyway, for now the energy is there and I am off to the gym. But before I do, I have to tell you about my visit to the plastic surgeon. (boy this chemo brain makes me forget the most important things).

Friday morning I fronted up to Dr D.P. really nervous. I knew I didn't want any more surgery, but I had resigned myself that I may have to have it. The doc looked uptight too, taking my measure, just like Dr. A.S. did a lifetime away. Although this guy doesn't have the cancer surgeon's charm or sense of humour, he has my admiration for his darned good common sense.

He said that, even if I wanted or needed reconstructive surgery, he wouldn't want to see me before 12 months after all the treatments have been completed. The reason being that it takes that long for the breast tissue to settle down and for me to assess whether the physical changes are acceptable, or cause intolerable problems with posture, back pain, and/or appearance.

Well, as far as I am concerned, the appearance (caused by one breast becoming much smaller than the other) can easily be corrected with a small prosthesis, so I wouldn't consider surgery for that, but I guess I am keeping an open mind in case I develop postural or back pain problems. Phew! Do I feel better!

And talking about living in the present.... Just had a call from Jackie and I am off to have fun with her and the kids, so I guess the gym will have to wait for another time and I"ll get my exercise running after Tegan and Leah, which would probably expend the same amount of energy, but will be much more enjoyable.

Ah, life! It can be so beautiful. Here's a pic Alison took of me doing my Qigong exercise under the old Moreton Fig tree in Bicentennial Park before the Taxol horror. I am wearing the same outfit today.

Fresh air

Thank goodness this phase is over. Today I feel a bit more like a human being again. Although the night was pretty active, waking and going to the bathroom every two hours, but when I finally awoke at around 6:45am, my head was clear and my body had some oomph and energy.

Now it's around noon and the energy bit is fading fast, but I've already been to the post office to pick up a beautiful, sturdy mystery bag someone kindly sent me, did a bit of shopping and did my Qigong exercises. Now I'll rest and hopefully the energy level will pick up again. Maybe tomorrow will be a normal day. That would be nice!

Paying the piper

Well, it seems there's no easy chemo and you just have to pay the piper sometime. For me that time is now. This Taxol has turned into a nightmare. Whereas the previous chemo cocktail was accompanied by severe fatigue and undefineable malaise, this time I am in pain - excrutiating pain. It's mostly in the feet and leg muscles. I shuffle like a 90 year old and groan each time my foot hits the ground, because it feels like I am stepping on a bed of coals on a pillow of air. I know, it sounds impossible, but that's what it feels like. The whole experience seems improbable.

So, what do I do besides shoving painkillers into my innards? I am inventing all kinds of distractions, like the old jigsaw puzzle, movies, books, and rotate them, because I simply can't focus on anything for long. One thing has come in very handy, though, and that is the old biofeedback that I learned 20 years ago to control my blood pressure. It's like meditation and it takes away the emotional turmoil and also provides temporary, but welcome relief from the pain. I don't seem to have the patience for the Qigong exercises - maybe tomorrow.

Taxol

I am on a new chemodrug called Taxol and I am to get two more doses of it during the next nine weeks. I remember writing about it almost 20 years ago as the new wonder drug for ovarian cancer, I think. It was a substance made of the Californian Yew tree, if memory serves right. The professor said that was correct. So, I looked it up on the web after I came home.

Taxol was originally found in the bark of the Pacific Yew Tree (Taxus brevifolia) in the early 1960s. Almost 20 years on scientists discovered that it killed cancer cells in a totally new way, by disrupting mitosis, the way cells divide. Unfortunately, the Pacific Yew Tree is one of the slowest growing trees in the world and it would take 100 years to grow the number of trees required to treat one patient. So, spurred by a big nasty fight between environmentalists and scientists, researchers found an alternative solution in an extract from a European ornamental shrub, called Taxus baccata. This was in the late 1980s, which was when I was reporting on these things for VOA. So, my memory served me well, chemo brain not withstanding. Halleluyah!

In any case, the US Food and Drug Administration approved Taxol for the treatment of breast cancer in 1995 and I am now the beneficiary of the treatment's refinement through the experiences of thousands of women in the past decade. It kind of makes you wonder how lucky you really are. Apparently, it has less side effects than the drugs I was given in the last three treatments. I do hope so.

In a practical sense, my day started at 11:20 when, after a nice cup of coffee and brunch with Alison T. and Sue C., I made my appearance at the Sydney Cancer Clinic. This time I didn't have to wait too long for the Professor after the compulsory blood test, but there was a long wait for the chemo lounge chair, so I was told to get lost for another hour and a half. Luckily I checked back quickly on my return, because it turned out that it takes three hours to get this infusion into the old bod.

So, I made myself comfortable and, who knows from whence it came, from the depth of some strange dark, unidenfitied part of my soul, I started to cry. Maybe it was because I didn't see my counsellor, maybe I was just shit scared of this new drug. In any case, one of the nurses saw my distress and asked if I would like to be distracted by a movie. Yes, please, so I watched "While you were sleeping' on a portable DVD player and forgot to cry anymore.

It was around 6pm when Alison finally drove me back home and I was ready for the sac. I woke up a few hours later absolutely starving. My feet and hands were hot, and one minute I was absolutely starving, the next full of energy and then fatigue. Totally different from the last set of chemos. But I was restless and didn't know whether to lie down or stand up.

What to do with this ravenous hunger? Until now the motto has been that I should not lose any weight. Now, after having gained some 4 kilos, the instruction is to lose weight. Yet they put something into that steroid cocktail that comes with the Taxol, that makes me ravenous. I was eating all night. How do they expect me to lose weight, if they give me stuff that makes me hungry? I don't have that much self control!

But, I was cleared to go to the gym and do any kind of exercise. So, no more excuses on that front. Well, it's now the second day after the chemo as I finish this blog. I haven't been to the gym yet, but yesterday I was full of beans almost the whole day, so Alison and I went for a nice long walk, I did my Qigong exercises under the old Moreton Fig tree and later met up with Eve at a nearby cafe. (Eve L. is my Birmingham buddy Doug's daughter who stayed with me for the first two chemos, if you remember).

I've heard about some chemo drugs that don't affect you very much, but I have also heard that with some the steroid cocktail they give you gives you a high for two days and then you crash afterwards. So, I am reserving judgment until next week on that one.

Ildiko and Alison have been spoiling me crazy since the chemo, but last night, as we had a temporary farewell dinner with Alison, who is traveling on today, Ildiko already gave me to understand that this will be short-lived, as I will have to start to go on a diet. And she means it! She is staying with me until at least Tuesday, to make sure I am OK, before she also goes traveling around Oz.

For the really voyeuristic among you, here's a bit of trivia. It is true that the chemo affects your eyesight and turns your nails blue. I hide the new nail hue with sexy nail polish, but tody I noticed that now even my cuticles have tuned a nice cyan shade, so now I have two-tone nails. Interesting! I am becoming unbelievably fashion conscious, just like when I was a teenager. Hmmmm.......

Anyway, here's a picture of me in all my obese glory taken by Alison on Christmas Eve at one of my favourite spots under the Sydney Harbour Bridge at Milsons Point. Me and my sunbrella.

Happy New Year

Sorry I was a bit lax in keeping up this blog, but what with Tunde's exciting news and the holidays..... who has time to think about a little thing like cancer........

Seriously, though, this has been the hardest chemo so far. Today was the first and only day that I felt healthy and myself, without going into bouts of fatigue. And yes, you guessed, tomorrow is time for another chemo. It's just too hard and too long, methinks.

But, I never dwell on this for long, so let me tell you about the good things that happened. On 29 December my friend Ildiko arrived from Hungary. She stayed with me for nine months almost three years ago, and was going to help me with the now infamous documentary that met an untimely death two years ago. Then she came to study English, now she is on holidays and has taken it upon herself to look after me for the next two chemos between excursions to various parts of Australia.

The second good thing is a week's visit from my friend Alison T. from London. Alison and I went to grammar school together in London and, although we have kept up over the years, we haven't had much time alone, because of family commitments and the tyranny of distance. We've been having a wonderful time catching up, although I must say I have been pretty crook the last couple of days. We all went to see the 9pm fireworks on New Year's Eve and watched the big ones on the TV at midnight, drinking copious amounts of bubbly and wine. On New Year's Day we went to a party, but had to leave early on account of me being so tired.

The weather has been awful, one minute hot, next minute cold, rain, rain, humidity and wind. Lots of wind. I am still not sure what happened over the past three days, but yesterday I felt so crook, I went to see my GP, who did every test under the sun, including for the heart, but everything seems fine. So, I think I just had several episodes due to the weather, nothing to do with the chemo or with my heart (sometimes my episodes can feel like a heart attack, which is quite grim).

However, today was a new day and I felt fine. I went to the stores with Susan R. and got an ottoman, so I can be really comfy over the next chemo round as I slump in front of the TV. It even has a storage area that's perfect for the big cross-stich project I will start as soon as my eyes can focus again. I also got some non-iron sheets, so all I will have to iron now are my amazing collection of sarongs and scarves. My Africa cloth head gear attracted a lot of comments today at the stores. Everyone thinks I am making a bold fashion statement. That's cool by me.

This evening Alison and I went to an African restaurant where we had West African food with foufou. It was great. I hardly thought about tomorrow. Now that I am, I think I better turn in and get the body ready for that next round.

I am thankful for the great friends I have and for the fact that today I did not have the blues. Tomorrow the treatment will be different from before, because I am going to get a different drug for the next three rounds. I don't remember the name, but am hoping that the side effects will be as bearable as those for the previous lot.

So, I am telling myself to hang in there, be cool and, most of all, I wish everyone reading this blog a Happy, Healthy and Wealthy New Year!