Checkup

Had my six week checkup with the radiation oncologist yesterday. I walked into the hospital with my list of complaints safely tucked in my backpack: fatigue (sleep between 3-5pm almost every afternoon since last week); still can't feel the ground under my feet - periodic pain in big toe, leg spasms (chemo remnant); numbness under right arm around breast seems worse (surgery present); unwanted facial hair (thanks Tamoxifen); etc, etc.

It seemed strange to be back in the clinic, which you have to enter via a heavy fire door that marks the border between the 'real' world and Gloucester House, home of the Sydney Cancer Centre, the abode of hope and despair that you will never leave completely once you've been admitted to its inner sanctum.

My newest concern, as I said before, was this new fuzz on my face, which by this time has been thankfully removed by my hairdresser Kay (but that's another nice story).

The first person I met in the corridor was amazing Kate, the cancer nurse. I've never seen anyone as friendly and available as Kate. She knows everyone by name, it seems, and she always drops some informational gem that calms one's frayed nerves. She said the offending hair will settle down and, as I suspected, it is from the Tamoxifen. Great!

So, by the time I saw the radiation oncologist I was in a much more stable frame of mind. She was pretty happy with my progress, and commented on how beautifully smooth my skin was after all the nasty assault it had been subjected to. It is not the first time someone comments about my skin in a positive way, but I always feel uncomfortable about it. It reminds me of an incident that happened in the refugee camp 50 years ago.

As a kid, my olive complexion stood out like a sore thumb next to my mother's blond hair and blue eyes. My father died when I was 12 years old, so as I was growing up and people made a comment, my mother had a mantra: "well, she had a father too, you know." Indeed, my father was olive skinned and so was his mother, judging by the washed out photograph taken in her old age.

Anyway, we have just arrived in a refugee camp in England and were lining up for a medical checkup, when I see next to me a teenage girl with the most beautiful olive skin. 'Doesn't she have a lovely skin,' I tell my Mom, a bit too loud, it turns out. To my shock the girl turns on me with a poisonous hiss: 'You have the same!' , and Mom tells me to shush. Away from the crowd, Mom said the girl was a Gypsy, and I was out of line. Not really understanding, I just kept saying 'but she did have a lovely skin, didn't she?!'

Poor old Mom. And poor old me, as it turned out, because from then on I was hounded by the gypsy boys for my 'beautiful skin' and I was terrified. Isn't it strange what memories we recall during this cancer journey?

Now what?

Normalcy is slowly creeping back into my life and I am really looking forward to visiting Tunde and new family in August, but I find myself wondering how I will make a living after I return. Freelance science writing seems too energy intensive and the temping, well I've done it for over a year and I don't want to make it permanent. Sitting 4-6 hours on the phone five days a week is not exactly my idea of a good time, and my motto has always been that I should enjoy my work.

Even during the worst period at the Voice of America, when the reactionary management was driving me crazy and my friends asked why I was still working there, my honest answer was that the job itself provided enough job satisfaction to outweigh the negatives. In actual fact, looking back, I realise now that at VOA I had the most freedom to choose the subjects I wrote about, the people I interviewed, in all my working life.

So, I have been dreaming about reinventing myself, perhaps using my proven international and intercultural communications skills. On Friday I had a meeting with someone I respect and got a good reality check. I simply don't have the credentials to do it. Things are not as simple today as they were in 1969 when, as a starving student, my friends Nina and Ira dragged me into the Hungarian Service of the Voice of America, and I was hired on my looks, voice and promise of a talent. I may have talent, but today I am old and fat and, besides all that, everyone wants a PhD or at least a Masters degree. I probably couldn't even get into the Hungarian Service of VOA!

I know I was thinking of doing a PhD last year, but right now, with the fatigue and all, even a postgraduate diploma seems too much of an effort. So, I am a bit nonplussed in this department at the moment.

And in any event, I have other, more mundane, concerns. I don't think I've mentioned yet the really appalling thing that's been happening since my hair started to grow back. In addition to the salt and pepper mop on top, hair is also growing on the right side of my face. I mean a beard - really! It's kind of thin and whispy, but hair nevertheless. Absolutely horrifying. Is this cancer now going to turn me into a man? I hope not. I always liked being a woman.

OK, I know it's probably the Tamoxifen and it's probably going to settle down, and if not I can just go and have a facial wax, but it's just the idea that's so appalling. One more thing to worry about. Goodness me. I don't think I've ever paid so much attention to my looks as I have since this cancer came into my life.... OKOK, no comments please!

Subliminal fears

Friday was a bad day. Yesterday was good. Up and down. It's a bit like being on an old ferry crossing the English Channel: one minute you feel you are going to be plastered on the ceiling, the next you plunge into the depths and your stomach heaves. Up and down.

In the old days when I went to visit Anna in Amsterdam, I was always the only one standing among the heaving masses, so hopefully I'll end up tall and square after this little journey too. But the various permutations of physical and non-physical outcomes seem to be much more now than on that ferry that I knew was taking me to visit family and friends on either side of the upheaval. On this journey I don't know whom I am visiting and how I am going to land. Like the Dalai Lama said yesterday in his speech here in Sydney (and I summarise from second hand information) 'the only certainty in this life is uncertainty.' And we know this Lizzie doesn't like uncertainty!

Anyway, back to Friday. I won't go into details, but basically I felt like during the chemo: fatigue, listlessness, difficulty moving around, metallic taste in the mouth, blah, blah, blah. Weep. weep, weep.

After a while I got bored with all this, and went on the internet to research the side effects of Tamoxifen: fatigue, depression, blood clots, etc, etc. Lovely! OK, said my addled brain, so this must be the fatigue and maybe the depression. WOW!

Suddenly, a feeling of terror gripped me. I had recently seen a program on how old people are over-medicated and have all kinds of terrible health problems. I suddenly visualised myself going down this path. The thinking was that, if my symptoms continue and I go and ask for help, I will be medicated for depression, then for the side effects of that, and I would end up like those old people in that program. Whoah! I am not going down that road! So, the only solution is to stop this Tamoxifen right now and that will solve all the problems. Weep, weep, weep.

Well, of course it's not as simple as all that. I really don't want to take this Tamoxifen, but the Prof says that it will increase the chances of living cancer free by 32%. That is a big sum and I have to pay attention. I plan to be here for another 20 years, so what is the alternative? Not much. So, relax and take the Tamoxifen.

Phew! Life can be so tiring sometimes, and I can be my worst enemy.

On Saturday I woke up normal. I had energy and I went back to the Film festival and saw two films - one great, the other depressing, but interesting. Ideas started flowing, and I felt like I was back in the saddle again. Up and down.

It's Sunday morning now and I feel fine. I am going to do some exercise, go and see La Vie en Rose, the film about Edith Piaf, and fter that attend an exhibition launch at the Jewish Museum. I guess it's uptime now.

Taking stock

Now that the body is healing, it's time to attend to the mind, which has been in a continuous state of reeling to and fro ever since 21 September. when I was told I had cancer. In addition to chemo brain and fatigue - both physical and mental - I've noticed a subtle change in attitude that may, or may not be permanent.

Until a few weeks ago my goal has been to 'get back to normal': being active, engaged in world and community issues and traveling. So, I decided to go on a 7 week around-the-world trip to see family and friends. I had to use my Star Alliance points this year, or I would lose them, so I got a free, 7 week round trip ticket to the States, with the idea that I would pay for the European leg only and save a lot of money. At first I wanted to fly from Washington to London and continue by train, but then realised that I didn't have the time to do that, so the whole thing became a jumble of short stays, since I had to return to Washington by a certain date. Crunch time came last Saturday, when I had to pay for all this. I took one last look at the itinerary and it didn't look right. It looked far too complex and the dates didn't seem to fit. We were looking at a long Queen's Birtday weekend, so I extended the pay period and decided to look at it more closely at home.

That same weekend I attended a two day conference of Jewish learning, the first day of which exhausted me so much that I was almost as ill as during the chemotherapy. I took one more look at the itinerary and realised that, in my present condition, there's no way in the world for me to do this trip the way it is. So, I had a chat with Suky and came to my senses and cancelled Europe. I am just going to see Tunde, Zabrina and the kids and hang out for the whole 7 weeks. Phew! I felt a thousand pounds lighter. I can't even imagine now how I thought I could do all that travel.

In fact, my whole general attitude now seems to be to: simplify, simplify, simplify. Not just with this travel, but everything. Whereas before I would dream up complex projects like the now defunct documentary, now I look for simplicity. It seems that this is all part and parcel of the cancer journey.

Yesterday I went for the first monthly support group discussion at the hospital. It was nice, because I reconnected with some of the women with whom I went through chemo and radiation therapies. Also, we saw a video that confirmed that I am not alone in this profound change in attitude towards my life. It seems there will be no going back to 'normal'. I am not sure how I feel about that, but I am realising that I am rather confused about what the new me will be like - both in terms of working and other things. So, instead of looking forward to complete physical recovery, I now find myself looking at psychological reconstruction and I am not sure how I feel about that. It all seems rather daunting after all that I've been through.

Everyday blues

Can't believe we are already almost in the middle of June. Time flies. It has a new meaning when you don't go in for the 9-5 grind. I don't miss it at all, but I do miss the socialisation. It's kind of strange to be at home alone so much of the time. Don't get me wrong, I have a lot to do and I don't get bored, but it's just different.

The other day I was talking with a friend and cried crocodile tears about getting back into the workforce. It's quite daunting, actually. For the past 8 months I've been totally absorbed with the cancer treatment and didn't work at all. Now, the freelance stories I thought I had fell through, as did my temping until mid-July. Maybe just as well, but I am going overseas in August-September, which will make it a year of not working for money. So, it's a bit of a worry, but after I dried my eyes, I decided to shelve that problem until I return.

In any case, that Tamoxifen seems to have settled down. I take it at night, as someone suggested, and I was nauseated only once during the whole week. I started doing some exercise and I've cut back the amount I eat, and also watch what I eat, so I am hoping that the scale will show a downward trend soon. A good incentive is my pending overseas trip in August, since the airline seats are not that large and unless I lose some pounds it will be a very tight fit!!!

The fatigue is easing. I had one day this week without fatigue, the rest of the time it seems to hit between 2-4pm. It's like a sudden wham! 'I am here, darling, your friendly fatigue, now be a good girl and like down, or I'll push you down!'

Yesterday evening I got a ride to a talk which started around 7:30pm and ended a little after 9pm. People were milling about shmoozing. I tried it too, but my friends took one look at me and saw that I was a gonna, before I opened my mouth. So, no schmooze for me yet. Next time.

Things being how they are, I have decided to organise my life as per normal and just do as much as I can. This weekend is a long weekend here, the Queen's birthday, and we are having a thing called Limmud-Oz, a weekend of Jewish learning. ( www.limmudoz.com.au ) I am going to go to several sessions, hopefully, and I am also giving a 3 minute talk about what guides do in our traveling exhibition "Courage to Care", which I have been associated with since it started about 10 years ago (http://www.couragetocare.com.au/).

The big treat for the coming weeks is the Sydney Film Festival, which begins tomorrow. I am going to see a lot of films during the next two weeks. It's such a treat once a year to soak up really good films.

About my teeth.... I've decided to hang on to them and try the old fashioned remedy of yes, you know: salt water!

And that's how the cookie crumbles right now.