Oops...............

Today I really goofed. As a result, the chemo has been postponed until Thursday.

Actually, the mistake occurred about two weeks ago, after I decided to change oncologists. I was scheduled to have a type of heart scan that would give the docs a baseline of how my heart works, in case I reacted badly to the chemo.

Not knowing anything about how the 'team' works, and being weary of the high cost, in case the new doc uses a different drug, I cancelled the test and forgot to mention it to Prof. M.T. when I last saw him. I tried to alert him via email, but the good Prof has gone bushwalking in Tasmania and there was no reply.

So, this morning started really strange. Before leaving for the hospital, I found myself checking everything around the house, making sure that I've done the cleaning, washing, dishes - a bit like before going on a holiday.

I caught myself saying 'farewell'. I had this gut-wrenching feeling about what lay ahead. I was feeling fine and healthy and could not imagine what it would be like after. It was like I was looking back at a full glass, and facing a void. Would the glass ever be full again, I wondered and was terrified.

The trip to the hospital on the bus was one of the hardest 10 minutes of my life and it was great to have Sue meet me there for coffee. It calmed me down, so when we got to the hospital we easily settled down to learn a new card game while waiting to get seated in the chemo cocktail lounge.

Not to be. The registrar caught the missing test and cancelled the session. The team then got to work. I have to tell you that I am totally awed by the thoroughness and kindness of everyone at this clinic. I am sure it was a big hassle for them that I couldn't start chemo today, but they never made me feel bad. They organised everything for me, and I got more information that made me confident that with the new medication I will probably not be as sick as I feared.

Now I feel very confident that I am in good hands all round, and I am sure that Thursday will be fine. Maybe it's just as well that I have these two days to put everything into perspective and not be such a drama queen.

Outside, it was a glorious spring day, sun in a cloudless sky, so we went off to enjoy Rushcutters and Rose Bay and I took some pics to share. Enjoy!

Cancer becomes you

It's a strange, twilight of the Gods type of day today.

In the morning I went for acupuncture to get ready for tomorrow. I was driving and, for the first time since the surgery, my right arm and boob were not screaming on account of the bounce from the pitted Sydney roads. Well, that's progress!

Driving seems to be my most creative time: so much so, that in the past couple of years I got in the habit of taking a Palm recorder to catch my pearls of wisdom as they come to me. Today, my fairly new Nokia N70 mobile phone officially replaced the trusted Tungsten T2, whose only redeeming feature nowadays is the shockingly difficult solitaire game it still hosts, to which I confess to being addicted.

So, the inaugural recording on the mobile deals with how I feel about this CANCER. Well, it's quite interesting, really. I am not angry with the world, or G-d, and I am not sad either. I am kind of resigned as I face tomorrow and also, as I've said before, shit scared.

To allay the fear, I decided to reward myself with a new pair of pants, which became necessary as I lost about 10 pounds since I moved to my new place four months ago and parked the car in favour of public transport and walking. I walked out of the store in a funky outfit, fairly unsuited to my age, but looking good, and then went to have coffee with Peter, of 'ditch the narrative' fame.

'Cancer becomes you', said Peter appreciatively as I twirled like a teenager in my new outfit, and we settled down for a cuppa coffee in Rushcutters Bay park, one of the many scenic parks along Sydney's foreshore. 'What a great title,' I cried. I was actually thinking of a book, but I guess this blog entry will have to do for now.

In the late afternoon I met with another member of the Muslim community who is interested in engaging with the Jewish and wider Australian communities.

And now, after supper, I am about to finish the wash (I cleaned the house yesterday), so tomorrow I can go to the hospital with a clear conscience and face whatever comes.

I am reminded of my favourite Georges Brassens song, Le Testament, in which he affirms that when it is time to go, he'll take the longest route.... take a new love, taste the finer things in life. I can understand his feelings perfectly (even though there's no sign of a new love, but that's another issue beyond the scope of this blog).

Beware

Today I got a taste of things to come, yet again. I have been feeling almost normal and enrolled in a day-long class about blogs to improve the present opus. The class was to go from 9:30am to 4:30pm. By 3:30pm I could hardly hold my head up, I suddenly felt so tired, so home I went on the bus (ten minutes to my door).

It's now almost 10pm and I was just beginning to thaw out and feel bright again, but not for long, because checking my emails I got news that a dear member of my Child Survivor Group in Washington D.C. is very ill, and there was a death and other illnesses in the group, including my own.

Is this what it's like getting on in age: being sick and people dying all around you? Of course it is, and there must be some crack I could make about it all, but nothing comes to mind just now. Maybe tomorrow.

Dr Booboo

I've just had the most amazing Shabbath dinner with a Muslim couple who wear traditional dress (yes, the wife wears the full veil by choice). As many of you know, I am the convener of the Jewish-Muslim dialogue in my synagogue and the man is very active in our group. They are both absolutely wonderful and extremely bright and erudite. Having them for dinner was like a breath of fresh air from all the problems I've been battling for the past couple of weeks. Very intellectually stimulating. If the politicians could sit down and have such a frank discussion, many of the world's problems could be solved - if not overnight, but solved.

But I guess the real highlight of the day was the arrival of Dr Booboo, another stuffed furry friend to help me on my journey, this time from Tunde and his friend Zabrina. Looks to me like Dr Booboo and Freddie the lion have found instant rapport.

It's lobular

We all know that we were created in the image of God and that in our own image we are unique as well. Nobody suffers like we do, nobody blows their nose or snores like we do..... you get my meaning.......

Well, just in case you had any doubts about me, let me tell you that my record of being a medical oddity, and coming into this life just to be a test of medical acuity has been proven once again. I don't have the normal, ductal breast cancer. No sirree! It's a rare, so called 'invasive, lobular breast cancer' (ILBC).

What is lobular breast cancer?

According to some of the information I've been able to gather from the internet, ILBC is a rare form of breast cancer that's difficult to diagnose and makes up about 10 per cent of all breast cancers. The cancer is formed outside the breast duct, in the lining of the 'lobules', and doesn't show up as a firm lump. It is difficult to find by normal self examination, because it feels more like a thickening than a lump and it often doesn't show up in mammograms.

I must say that I have felt something a little different, but since it wasn't a 'lump', and I had regular mammograms, I wasn't worried at all.

Also, new research from Europe shows that lobular breast cancer is more common in post-menopausal women who have been on Hormone Replacement Therapy (HRT) for more than 5 years. I've been on HRT since 1989, so I guess that put me in the high danger zone in 1995.

The good news is that, apparently, the treatment and expected outcome for this type of breast cancer is the same as for ductal breast cancer, so knowing what type of cancer it is basically helps me feel less stupid for not noticing it before. And that's a blessing, I can tell you.

You may also be glad to hear that my journalistic antenna has been raised. If I have never heard of ILBC, I bet most women haven't either, and there's a good feature story lurking to explode from the dust sometime, somehow. So, stay tuned.

The day before tomorrow

My horoscope today says: "Give your mind a rest -- let your heart and soul be your guiding lights, especially when it comes to personal matters. Logic is great, but it's only part of being a well-rounded human being. Let your emotions speak too." I'd say they were psychic, if I didn't know any better - lol.

Yes, it's a tough day today, but someone has to live it. I have been living in a kind of twilight zone, knowing that the 'black soup' was coming (Hungarian euphamism for really bad times), but managing to keep my head above water and carrying on as if everything was normal.

Last night Jeannie K. took me to the Great Synagogue, the most amazing 19th century architectural gem hidden in the centre of Sydney, to hear the Chief Rabbi of Great Britain, Sir Jonathan Sacks, talk about how "To Heal a Fractured World", the title of his new book. What a great orator, and what a pity he didn't have anything insightful or wise to say. You can't fix all the ills of the world, he said, but you can do your best to do what is right in your own little circle and the ripple effects will be felt later - perhaps much later - but it will surely make a difference in the grand scheme of things.

Well, most of the people in the audience knew that bit of wisdom already. I saw many, many people there, who spend a lot of time and effort doing positive social action, or work in other ways for Tikkun Olam (repairing the world). Surely the Chief Rabbi could have elaborated just one little bit, step out of the square for just a few inches and minutes.......

OK, I digress. Not the first time. So, back to the cancer hole!

Yesterday I went to meet the radiologist, Dr S.P., who will be responsible for the radiation therapy, if that's what I am to have as the icing on the cake, as it were, at the end of all the other therapies. She is wonderful, and I am now happy with the 'team'.

She kept looking at my breast, looking for 'the scars', and that's when I came to realise just how bloody brilliant Dr. A.S. really is. Apparently, most surgeons do a second cut under the armpit to take out all the lymph nodes, but my golden boy did it all through one, not so large aperture in my ample bosom, and that is probably why I am recovering so well. God bless you sir, if you ever read this blog.

Today the expected call came from Prof. M.T. His voice was correct and distancing, making me instantly alert to analysing nuances of meaning. "We have examined all the scans and are ready to discuss our recommendation for treatment. Can you come and see me tomorrow," he said and my stomach instantly went into a Gordian knot of pain, making it hard to focus on what was being said.

"I have an appointment to see Dr. A.S. at 1:45pm," I breathed down the line, as if that could somehow delay the inevitable encounter. "Oh, then can you please call this number and make an appointment to see me before."

The light went dark in the kitchen, the tears fell, bringing no relief from the fear the sound of this man's voice evoked in me. I have heard this tone before, when the other doctors prepared themselves to tell me the bad news: 'you have cancer', 'it's in the lymph nodes'. Is he going to tell me that it's gone into the major organs as well?

I am alone and Freddie the lion, perched quietly on the piano, is of no help at all. I call my cousin Anna in Melbourne, she is used to my tears. But it seems that Suky, who is visiting her daughter Tess in South Carolina from London, has gotten on my psychic channel, feels my pain and calls with words of wisdom. I calm down and the light is turned on again.

I am probably making a mountain out of a molehill, but what, with the 50th anniversary of my father's death, the revolution and our escape (the beginning of my 16 year track as a stateless person), a bit of rare cancer (that's another story) is just a tad too much to bear.

I wish I was a little girl. I wish my mother and father were here to take away the fear and uncertainty. But they are not, so I guess I just have to pull myself up and let my family and friends hold out their strong shoulders for me to cry on. Thank God, you are there guys! I need you a lot and appreciate everything you are doing for and with me. What a balagan (mess)!

History

I don't know about you, but some dates and situations just stick in my memory - like the day Stalin died. They were playing classical music on the radio and a girl in my class cried her eyes out and I wondered what the hell for. Didn't her parents tell her the guy was not very nice? That was in 1953. Sure dates me, doesn't it?

Then there was the day my father died: 21 June, 1956. It was the day my cousin Andras' dog bit me. And it was the day I turned my back on JC forever. I had made a deal with the big JC to save my father. But he died. Well, that was the end of JC for me. What does he know, if he can't save one lousy human life, right?

But I digress. Of course these memories return, because today is my cousin Gabor's birthday and his sister Cathy turned 60 yesterday. It is also the 50th anniversary of the Hungarian revolution. And I definitely remember where I was that day - in Buda with my cousins, celebrating Cathy's 10th and Gabor's 14th birthday. I couldn't go home for a week.

I can only guess the state my poor mother was in. Not only did she just lose her husband of 21 years, but two weeks before that she underwent thyroid surgery, and here she was, all alone, with me stuck at the other end of town and my brother out on the streets, blending in the crowd, playing the hero, like every other university student.

And yet she coped. Not only did she cope, but she also found the strength to organise our escape in December, to fulfill the pledge she made with my father: as soon as there was a chink in the Iron Curtain, they would leave.

People came to say good bye and warned her of the dangers of her decision to defect. They didn't have to tell her, she was already scared. But she persisted with her decision to leave. And when we discovered that the fishing boat had been disabled by a bullet hole, she decided to continue the journey.

I remember Mom was scared whitless as we huddled together, wet, in the leaking boat, with the sound of border patrol boats whafting towards us in the starlit night. She was sure they would come and get us.

Well, they didn't. Every watchtower we passed was empty and all the flares were too far away for us to be seen by the bad guys.

So, the lesson I take from all this is that no matter how terrifying a situation one finds onself, one should not give up on one's dreams.

As many of you remember, I had a pretty amazing mother. So, I figure, the least I can do is to emulate her example and take this cancer thing in stride, continue with my dream and write that book, screenplay and short stories. Making a living will take care of itself, somehow.

A New Beginning

I have a new oncologist. Hooray! Prof. M.T. is a gem and I am really confident that whatever treatment he recommends will be optimal. He listens, makes sure I understand what he is telling me and he is funny to boot. What more can a shit-scared patient want!

So what's the downside, you ask? Apparently, some of the cancer has spread beyond the lymph nodes, so the next step is to determine how far. It doesn't appear to have spread very far, but there will be more tests coming. Because it's hormone sensitive and I am off HRT now, Prof. M.T. says whatever remains will grow more slowly. He may recommend hormone treatment first, and then chemo. Radiation was not mentioned at this stage.

Overall, I think all bets are off about treatment protocols until all the results are in. He seems to believe it's more important to be careful establishing what the actual status is, than rushing willy nilly with treatment. I drink to that!

But it means that we are back to almost square one, so please just keep the good vibes coming!

Into Life

Hyde Park was awash with sunlight today, as if to welcome me back into life.

Yesterday was a blue day. Emotional ups and downs, until even I got bored with them.

Today was a new day. I went to Hyde Park with my new choir mate Jennifer to see the Sydney Life photographic exhibition. It was a magic day, with perfect light for viewing and doing photography. I felt I was coming back to life and forgot about the blues. Those will keep for tomorrow, when I hear what the new oncologist, Prof. M.T. has to say.

Until then, enjoy the new pics in the Links side panel.

Respite

Ok everyone, let's take a deep breath. Since dispair is not an option, proaction is the operative word on this journey, and that is exactly what I did today with regards to the oncologist issue. And (yes I know the rule is never to start a new sentence with 'and', but this is a 'thank you and') thanks to my great friend Peter J. and my brilliant surgeon, Dr A.S., the switchover to a new oncologist was as easy as pie, with an appointment already secured for Friday. Why did I ever think it would be otherwise?

I spent endless hours wondering how to broach the subject, made inquiries how to go about it, and by this morning I was thoroughly bored with the subject. I had an appointment with Dr A.S. to drain some fluid from the surgery area, so that gave me a perfect entry. But I was still worried, so about two hours before the appointment I felt I should take someone with me. God bless Peter J. for taking the time.

We got there early, so I poured my grieving heart out as I sipped my coffee. Peter listened and started drawing an imaginary Maginot line on the table top.

"So, let's cut to the chase. What's the bottom line?" - he looked me straight in the eye at an auspicious moment as I stopped to breathe.

"What do you mean?" - I looked at him with incomprehension.

"What do you want from this guy?"

"I want a different oncologist!"

"So, can I make a suggestion?"

"Sure."

"Why don't you go in there and tell him just that. Forget the narrative, just tell him what you want."

A light bulb lit up in my addled brain. "What a great idea, why didn't I think of that?"

So, leaving the 'narrative' behind, Dr A.S. saw a confident me sit down with the opening gambit: "We need to talk. Three queen bees in a hive won't work."

How true is that? And he never knew that he has Peter to thank for not getting the whole sorry 'narrative.'

And that's a good lesson I will remember the next time I cogitate into the night. "What is the bottom line? What do I really want?"

Thanks Peter, I needed that!

Chemistry or bust

I was going to begin this entry with a philosophical treatise on the depersonalisation of medicine, but I guess I've already done that, so I won't belabour the point.

Thank you very much for all your concerns. My recovery from surgery is going well. I have almost full mobility in my right arm, and not too much pain. Today I did my full series of Quigong Tai Chi without pain. Hooray!

Unfortunately, it seems my enthusiasm for the TEAM was premature, because I had an incredibly unpleasant encounter with the oncologist and her registrar yesterday. Luckily, Sue C. was with me and was pretty shocked too by the behaviour of these two women, neither of whom listened to my concerns, but did their level best to badger and coax me into undergoing the toughest chemotherapy regimen there is.

Like the Counsellor from Hell and the lazy anaesthetist, they uttered words according to the book, but ignored any legitimate concerns I put on the table and chose to regard them as ignoramus refusal to cooperate.

Oh dear! You've guessed. The sparks flew. The registrar stormed out in a huff and the oncologist laid down the law that I start in two weeks. I don't think so! Not with those two anyway, or at least not without some attitude change, thank you.

Whatever happened to the medical profession? Whatever happened to the hippochratic oath - 'do no harm'? These 'medical bureaucrats' may be technically brilliant, but they are mentally abusive at most and insensitive in the least.

So, now I am not a happy chappie as you can see. With all the normal fears that gnaw at me, I must now make the extra effort to somehow defuse the bad impression on both sides and ensure that I have a TEAM that I can truly trust. From where I sit it doesn't seem fair.............

Freddie

Some people and things come into your life at odd times and take a position of prominence belied by their appearance. Such is the case of Freddie, the stuffed lion.



Freddie came into my life in the hospital, curtesy of Judy P, who announced that Freddie will take care of me during the cancer journey and for the rest of my life.

Well, it was love at first sight, and Freddie and I are now inseparable. Just look at those eyes.....

We are going to meet the Team on Thursday afternoon, so until then enjoy the new links on the side and keep the jokes coming. Love you all.

Done Deal

The million dollar view of the Parramatta River from the hospital room window and me in the comfy, but collapsible armchair.


Hello, everyone. Thanks so much for all your amazing thoughts, and good vibes. I came home from hospital and the verdict is in: After a lumpectomy (still lots of boobs left, thanks) and removal of all (31) lymph nodes from my right armpit, it appears that the cancer has spread into many of the glands, but no further. Grade II breast cancer, whatever that means. So, that's the bad news.

The good news is that the bad guys (visible cancer cells) have been removed and, just to make sure none are lurking in the shadows to invade my gorgeous innards again, I am going to be taken into the bosom of an amazing cancer treatment team at the Sydney Cancer Center, which is close to my home and is said to be one of the best around. I don't know what that means yet, but if they are all like my surgeon, who is part of the team, then I am truly in good hands. Not only is he handsome and desirable (shucks, he is young, married and unavailable), but also kind, empathetic and supportive with solid advice.

OK, so I like the guy. But I can't say that for some other members of the medical profession I had the displeasure of meeting this past week.

It is absolutely amazing to me that in this age of medicalisation of almost every facet of our lives, the medical and allied professions are becoming more and more impersonal. No wonder many people with serious conditions don't want to have anything to do with them and wait too long.

Who wants to be prodded and squeezed into gigantic machinery by equally cold and robotic techs, who have taken the art of professional dissociation to new frigid heights and manage to make you feel like a pound of meat on the butcher's slab?

Who wants to be pressured into approving the use of a previously almost lethal anaesthetic just to make the day's work easier?

OK, I could go on about other things as well, but I'll keep that discussion for another time. I just didn't want you to think that I've gotten besotted and lost my critical faculties.

The Time Has Come

Ok guys, the waiting is over. Surgery is scheduled for tomorrow. The good news is that the lymph node biopsies came back normal. So, the procedure is the following. In the morning I am going to have a test - mapping the lymph nodes. They will put a dye into the lymphatics to see if any of the lymph nodes around the breast harbour any cancer cells. If there are any, those will be taken out for frozen section as I lie on the table. If they are definitely positive, the surgeon takes out all the lymph nodes (5 days in hospital), if it's normal or ambiguous, no more glands will be taken out until those already out go through further testing (2 days in hospital). So, there's still uncertainty, but it will get done. Whatever treatment will be necessary afterwards will be determined by what the surgeon finds.

I am totally overwhelmed by the outpouring of support. The morning test is close to my house, and I have to be there at 9am. Marianne B. will pick me up at 11am to take me to the Mater hospital in Crows Nest (on the other side of the city). The surgery is scheduled for the afternoon, so Judy P. will come in and hold my hand before going under the knife and then Nellie G. will be there when I wake up. Isn't this amazing? Oh, and last, but not least, Lucy SK in Namibia is organising a 5 continent praying effort, so if you get an email from her, please don't chuck it, just do whatever she says. Can't hurt, anyway.

That's all for now. Will get back on the blog when I return home in 2 or 5 days time.

The Waiting Game

It's an awful long wait from Thursday to Wednesday, since the best laid plans can go awry. The flu that's currently sweeping Sydney is a tenacious beast and it just hangs on and on. As I said, Friday was lost to it. Then Saturday, came as a restful respite. In the morning I went to the hairdresser (not about to go under the knife with grey streaks showing, am I?) and I did some important shopping, like getting a couple of fish for my aquarium to replenish the ones that went belly up a few months ago. Later, Jackie (Chris' daughter) came over with her girls, Tegan and Leah. We went to the park at the back of my house and just hung out and discovered a small, hidden, well maintained wetland with lots of happy frogs. The weather was magic and the whole afternoon was thankfully normal, with a feeling that all will be well in the end.

By the time we got home I was exhausted and the evening was spent veging out in front of the tube with my two homestay students, Christina and Fumie. It was Fumie's last night. She is a fabulous bassoon player from Japan, in Australia to learn English and study with a bassoon master. She is moving into her very own apartment - a first for her. We are all very excited for her. Christina is from Germany. Her English is really excellent, but she feels she needs to polish it and she has just landed an internship with Novotel hotel, which is very exciting. In all this turmoil with my health Christina has elected to stay with me, so I expect her to be here for a few more weeks. Tomorrow I am expecting the arrival of Eve, my Birmingham buddy Doug's daughter, who also elected to keep to her original schedule and stay with me through my turmoil. So, I will be surrounded by healthy youth and energy for the next few weeks.

And, other offers of help are also pouring in. Jackie said I could go and stay with them. June, an A-class journalist friend who now lives in Queensland, informed me that she is also a nurse and would love to come down to nurse me. Judy P. and Marianne B. will ferry me to and from hospital, Peter J. will come for long walks afterwards, Paul R. will do the coffee and there is a room reserved in Marti and Marton's 'Paradise Hill' retreat in the blue mountains. My niece Judy G. offered to come over and, last but not least, Tunde will come and hold my hand at some point. The outpouring of love and affection from everyone is quite overwhelming, thanks.

But as I said, I have decided to continue as per usual, so yesterday Peter DK and I went to film some newborn racing pidgeons for the documentary we have started with my camcorder club friend Joy. She is away and the chickies are growing, so I was determined to get it all done. I was totally bushed by the end and that was all my activities for Sunday. Missed Kol Nidre.

This morning I went to Shule for Yom Kippur Morning Service, but left after two hours because I got too tired. It's been a strange High Holiday season for me. Missed most of it, but I don't want to dwell on that.

Now it's Monday evening and I am getting ready to pack it in and have a good night's sleep before the day of reckoning that is tomorrow. I'll get all my test results and the uncertainty will thankfully be over. For now I look at Tunde's flowers (in pic) and Doug's silly missive (llama song under links) and smile. Thanks guys. Keep the jokes coming. I'll share.