Radiation here I come

Today is another day. Woke up fairly perky, but running out of puff fast and I am due to see the assessor for unemployment benefits later in the day.

You may wonder how I've been managing financially all these months. Well, thank goodness, we in Australia still have avoided the US trap of giving up all social services, and I am getting financial help on medical grounds. It's a great help to keep me afloat – just. However, when I am ready to rejoin the world, my temping job is still available and I have some prospects for freelancing, so all will be well.

In any case, I saw the radiation oncologist yesterday and this is the plan. We start in three weeks. I'll have radiation every working day for 6 weeks. It's pretty drastic. It will be the whole breast from the ribs to the neck. I can expect to be very tired and possibly have peelling burned skin as well. Not to mention that later on I may have brittle ribs and my breast could turn into a hard rock.

What fun to look forward to. But the reason they do it this way, it was explained, is because, while the chemo is expected to kill all the cicrulating cancer cells, it doesn't necessarily reach all those little bastards still lurking in the breast tissue. So, they zap that area with radiation – to mop up, as it were.

It's like a war. Go for maximum kill fast. If I get sick in the interim, I am the collateral damage. Well, I'll try and keep fit, so I won't get that way. I have determined to do a better job at keeping fit and my energies up. I am just ballooning from the chemo and will check how I can reverse that. There must be a way!

And last, but not least, I saw Angela the counsellor and calmed down. She said I can go and see her as long as I need to, which is a great comfort. The best thing is that my cousin Anna is coming up from Melbourne on Sunday and we can hang out a bit. Yeah!

Another twilight zone

So, it's over – for now. Sunday and Monday were lost to the Taxol. The pain was bearable, but I couldn't walk and by Tuesday my bum grew another five inches and stuck to the back of the couch. But, my cross stitch is coming along nicely and I think I have had my fill of old movies for a while.

My face is getting rounder and my head looks more and more like humpty dupty. Maybe it's because I lost more of my eyebrows and the stubble on top of the round tip is getting whispier and whispier.

It was difficult. I think it was so difficult, because I had been spoiled by Ildi and Alison and Sally and it was hard to be by myself. Nellie caught a bug and was very sick over the weekend, so she couldn't come and be with me. We laughed about it over the phone in the end, but it just isn't the same as having someone with you. So, I talked on the phone a lot and slept a lot too.

Today was better. My mind was clear and I got up early, did my Qi Gong, and worked on editing a booklet for the Amnesty International speakers group I belong to. In the afternoon I braved the sun and wind, got on the bus, and went to have coffee with Sue, who had just been retrenched. There should be a law against unexpected retrenchment. It isn't fair. You go in to work as per normal, and then the boss calls you in and tells you, thanks, no thanks, you are retrenched. It's happening to a lot of older journalists and there's nobody to mentor the young ones as we had been mentored when we started. It's a real shame.

Anyway, back to the me issues. It was difficult to walk today, as the legs buckled still. I walked like a 90 year old. I tried to keep upright, which meant I slowed down. It was a bit embarrassing crossing the street and the cars waiting impatiently. A taste of things to come, I guess.

In any case, right now I am not feeling too hot. I think I am nervous about tomorrow and getting ready to face the radiation oncologist. I guess I just can't let go of the image of my friend Nirmala, who was burned more than 20 years ago and lost the quality of her life to the end. Mind you, she was the bravest person I know, except for her family, who lived with her. It must have been very difficult for everyone.

Luckily I am going to see wonderful Angela, the counsellor, before Dr. S.P., so I can get a lot stuff off my chest, including some family stuff that will force me to reevaluate my relationship with my brother. I thought I had sorted all that out, but evidently not.

At the moment I feel like I am living inside a Charlotte Bronte melodrama. It would be nice to wake up tomorrow and realise this is all just a bad dream.

Taxol, farewell

Yesterday I had my last Taxol shot. The morning started auspiciously. The bus I was meant to catch to the hospital didn't come and the one that did come was late, so I was 25-30 minutes late for my appointment with the Professor. No matter, I thought, it's always a long wait, so maybe this time I'll be on time. So, I booked in at reception, went to get my blood test (they don't start anything without those results) and sat down quietly to edit something I am doing for my Amnesty International Speakers Group.

Wouldn't you know, 20 minutes later the Professor comes looking for me, apologising for the wait. So, I sit down and first thing that comes out of my mouth is a big wail. Who knows whence it came, but I started crying my guts out. The Professor is famous for his humanity and so he should be. He was incredibly kind, and after I dried my eyes and stopped babbling, he just kept the jokes coming until the end of the session. My kind of guy. The problem was that the blood tests haven't come in yet, so I had to wait some more.

In any case, it the good news is that the weight (much of which is water retention), the hand, foot and nail discolouration (I have chemo rings on every nail now), foot pain and other muscle and joint pains will eventually disappear (no, he doesn't know when) and my hair will definitely regrow – probably stronger and curly.

The blood test results were expected pretty soon, so I called Sue C who lives nearby to start walking and meet me in the hospital cafe. Nellie G, who was going to stay with me for the worst, was already on the way to keep me company for this last stretch and take me home. So, after the blood tests were in, I went to the chemo lounge, got my pre-chemo pill and went off to have coffee with my friends. It was great to be distracted by good company.

In the chemo lounge the atmosphere was relaxed. It was a quiet day, the nurses had time to give patients more attention, not like in the mad rush of the Christmas and New Year season. I commiserated about that with Cath, who did my last two chemos and who was clearly doing work well beyond the call of duty, with good grace and humour. Yesterday she was relaxed and Catherine did the honours. I don't know what it is, but there are eat least three nurses with variants of the name Catherine.

I think I said in one blog that I bought a portable DVD, but in the end I decided not to take it with me,because it was too heavy. So, I asked Catherine whether I could have one. She brought me two inane comedies to boot. Nellie and I watched both, but they were really stupid, so Nellie went to choose something and came back with Ali, because we both like Will Smith, but watching the film I realised I hate boxing and I never was a fan of Cassius Clay, so we left it, and just had a wonderful quiet chat.

Since I came home I have been felling OK, just scatty and hyper one minute and tired the next. Nellie has a slow form of MS, which she told me yesterday has recently flared up, so I told her I don't need her to stay the night, because I feel OK, and also I don't want her to be exposed to my toxicity for the next few days. They tell you to stay away from kids and people with weak immune systems for the first two days. Don't know what mothers do, but that's another story. Makes you wonder how strong this poison is!

So the evening went by fine. I worked on my cross stitch wall hanging and watched TV. Today I am by myself and it's fine (Nellie is coming over tomorrow afternoon). In the morning I still had some energy, so I did some correspondence, my Qi Gong, and odd bits and pieces. Now, I am getting tired. I take very strong antinausea pills and I started taking the lower level panadine, so I guess they slow me down. The portable DVD is coming in very handy, because I can lie comfortably on my bed and watch Moulin Rouge, the new version, which I didn't have a chance to see in the theatre when it came out. All that talent makes me wonder about mine....... But that's another story.

Now, I shall go, get Dr Booboo and and Freddie the Lion and finish watching the movie and go to sleep. Talk to you later.

Swimming right along

So far so good. I've been swimming four times this last week, so the pattern is established. Now, I'll have a bit of a pause for this last chemo tomorrow, and then the motto will be 'lose weight Lizzie'.

As my London doc, Toni Toszeghi opined in 1991, when I went to visit him the last time, and he pulled out my records from 1964(!) "You were 15% overweight then too.", I have never been a skinny girl, but my current weight is ridiculous. I take comfort in the fact that it's probably a lot of water from all the steroids I've received recently, but who am I kidding.

Ever since I started this chemo horror, I have been indulging in food I haven't touched in years, hence the 7kg weight gain. Now that's about 15 pounds among friends, so you can see I am not beating the drum for nothing. But, respite is in sight.

On Mondy I had morning tea with Julius, a friend of my cousin Andras who lives in Hungary, and we have agreed that he and his partner will help me break in the bicycle Andras bought me over a year ago in the vain hope that I would shed the kilos. My excuse then was a bum knee. But as many of you know, I have had bum knees before and always bounced back from the walking stick, so I did this time too. So, there really is no excuse, and I am determined to get a waist again before I get to be 70! So, you heard it first here. Remind me mercilessly if my resolve slackens!

OK, so this is all a lot of horsemanure. What is really going on, you ask. Well, this time the blue day stretched into 3 blue days. I guess this upcoming chemo being the last one, there is now the uncertainty of the radiation, so I've been pretty listless since Monday. I can hardly wait for tomorrow, for the chemo to be over. It's just been too long and too horrible! And then I've still got 6 more weeks of daily radiation to look forward to (scratching my head). They say it's not as bad as the chemo. Well, that's a blessing – I guess!

Blah blah

Sometimes I feel like these pelikans. You figure it out and enjoy the pic sent to me by Lucy of the 'Prayer Circle for Liz' fame. Keep it up guys, it's working.

My counsellor said today that I seem to be much stronger than when I first went to see her, and she asked me a strange question: "Where does your resilience comes from?" Darned if I know, but Mom had something to do with it, for sure.

Ah, my aching feet!

Today is not a good day. My feet are absolutely killing me, and the frustrating thing is that I don't know whether it's leftover goodies from the chemo or just pain from doing some exercise after all these months of sitting on my buns, or perhaps, due to my excess weight.

OK, backtracking. This morning I went swimming for the first time since I contracted whooping cough in a public pool almost a year ago. It was lovely. I didn't realise I missed the water this much. I thought I was good and didn't over do it. I swam, walked and cavorted in the water for a half hour.

However, after that I went on an amazing, 2 hour long, public transportation adventure searching for live plants for my aquarium. First I went to Chinatown, but the pet shop there only catered for dogs. Then, on the way home on the 470 bus, I learned from fellow passangers that there's a great pet shop in Leicchardt – the other end of the line – that has a good range of aquarium products.

Great! I stayed on the bus and got off at the Leicchardt Market, which is about a 5 minute car ride from my house, but a 15 minute bus ride, because of the large detour through another suburb. No matter, I was there and I set out to find the pet shop and get some small things from the supermarket. The long bus ride gave me a chance to finish the book I was reading.

Eureka! The pet shop was lovely, they had the plants my fish love and I came away with three more fish that, I was assured by the staff, may survive those carnivorous Angel fish. (I had five guppies, but there are only two left, with no sign of cadavers ever.....and it appears they are bait for the Angel fish)

Armed with my loot and puffed up with success, I waited at the bus stop. However, the 470 was not marked on the stop (bus stops usually have timetables for the buses that stop there). What to do? I know I got to the place on the 470, so why is it not marked? I asked the driver of the next bus. It seems the 470 goes there in the morning, but only until 3pm. It was now 3:45pm. With the temperature about 28C and my sweat glands working overtime, I got home and hour and much walking later.

I soaked my feet, which were on fire by now, and kept them up for over an hour through the news and current affairs programs on TV. But the pain was relentless and when I stood up, I could hardly walk, just like the second day after the chemo. I took the strong pain killer and it's better now, but I am just so frustrated, because I felt so great this morning and I never seem to be able to get ahead. Boohoo......... I am really feeling sorry for myself. I shall drown my sorrows in doing my new cross stitch project, which is coming along nicely, thank you. And I can do it while I keep my feet horizontal!

In the meantime, my nails have three blue rings from the chemo, and I just noticed that there's some internal bleeding on one of my toes, but I can't see any break in the skin. I heard about that happening to someone else on chemo, just the other day. Maybe it has something to do with the pain? Who knows? So frustrating! I feel like I am in limbo. Counsellor, where are you? Ah, Ok, Thursday is not that far off. I can hold out until then............. It's not that bad really. I've got Dr Booboo and Freddie the Lion to cheer me up. Come on fellows, let's do the twist......... hohoho.......

Crazy

The best medicine for this crazy journey is friends. No doubt about that. I mean, just look at us. Alison and me hamming it up, falling about, just as we did when we were teenagers. I didn't even have a drop to drink. Honest. And don't you just love that recut wig? Looks just like the 'real' me, doesn't it? And now I am learning to love my turbans too.



But seriously, let's get back to the cancer stuff.

The sad news is that our friend Margaret Avery did die a few days after I wrote about her in this blog. Margaret was 4ft 11" small, with the heart of a giant. I remember the day Suky, Charlie (as we called Margaret then) and I were hanging out in Trafalgar square in London one day in the early 1960s and saw preparations for a meeting by some group called the British Nationalist Party. Being very political, Charley and Suky went in like sniffer dogs to see what was going on. Well, wouldn't you know, it was the British Nazi party. When they told us that they are for "Britain for the British", my knees started knocking and I was ready to leave. "I'm out of here, let's go," I said, but Charley and Suky said no, let's wait a while. So, we did. And when the big (6ft+) gorillas on either side of us clapped and hollered at the most disgusting xenophobic speech I have ever heard, Charlie put herself in the Chinese 'horse standing stance' and with her tiny hands on her tiny hips started to boo so loud that even people on stage could hear her. You should have seen those goons turn on her. But Charlie was oblivious. She knew what was right and wrong and she just stood her ground for what was right. Yes, of course we mnaged to drag her off, but I learned a big lesson that day. You don't have to be tall to stand tall. Thanks Charlie, for being my friend and may you rest in peace.

Me, I've got a lot more living to do and I hope that by going through this awful ordeal now, I will be spared Mrgaret's agony of the past few years. My counsellor asked me last Thursday whether I was angry? Angry at what, I wanted to know. I truly don't feel angry. Over the years of working in science labs, surrounded by fumes and radioactive isotopes we now know to be carcinogenic (not to mention my 25 years of smoking), my choice to have HRT, and my possible Ashkenazy genetic inheritance, it's really hard to point a finger to a specific cause, except maybe myself. Well, the last thing I need is to beat up on myself, so I don't think being angry is of any use at all. I sometimes feel sorry for myself, like hey, why me, but that comes from somewhere else, not the place of anger. So, no, I am not angry. But I do need the counsellor to ask me those difficult questions, so I can stay focused on staying healthy mentally.

For example, she asked me if I was ready for the last chemo. I was quite surprised by the vehemence in my voice, when I just shot out that 'NO! It's so awful, I will never be ready for it. I will manage it, but I will never get used to it, or be ready for it. And then the piece de resistance happened, I freaked out when we discussed the upcoming radiation therapy. I didn't realise just how scared I actually am about that. It has to do with my longstanding fear of radiation and having witnessed my dear friend Nirmala losing her quality of life when she was burned on the neck by radiation therapy. OK, so that was almost 20 years ago, but she lived another 15 years not being able to taste proper food, because her neck was messed up. So, you will not be surprised that when the counsellor suggested another meeting in 2 weeks, I immediately asked for one next week. I can't afford to lose my positive attitude to fear. My positive attitude nothing to do with being brave, but rather it's a case of pragmatic necessity.

Before the last chemo I was talking with another patient about our positive attitudes. She has advanced cancer and as far as I can discern, she is even more positive the me, and her prognosis is not good. She was telling me that just that day she was told she had more spots on her liver and her daughter was off organising more scans. We were patiently waiting for our poison potion and swapping jokes, when we started talking about how much more difficult this cancer can be for the families and loved ones, than for the patient. She put it in a very succint way. She said: "I can't look back. I can only look forward."

That's exactly it. We, who are in the middle of it all, we can't think too far ahead. We need to live every day according to our ability and we can't allow anything to drag us down. When her daughter returned, it was obvious that she has been crying her eyes out and I felt very sorry for her, but understood the mother very well.

Perhaps this will give some idea of what this really is like. I may smile and look brave, but I don't feel brave. I just live each moment on the relative upbeat in the hope that when I falter, the fall won't be too far. It's OK for you guys to worry about me, thanks very much, but I think your 'admiration' is misplaced. I think all cancer patients who survive, must make this choice to look positively at their situation. Like Diane, my new friend in cancer said, 'it's the only choice we have'.

With Ildi at the Opera House and with Alison and her daughter Sally in the 'Bush'. (They walked, I read my book in the shade like a good grandma should -:)


Thank you Ildi, Alison and Sally for being such a joy and making the last two chemos so much more bearable!