Frustrations

I can't believe we are in December already. Where does time go? I seem to be sleeping most of the time, or trying to follow some schedule I never really stick to.

I can't work anymore. Actually, that's a good thing, because my temping job is changing owners next year and I don't want to get used to a new unhealthy working environment. The job is market research interviewing for the NSW health department. It can be interesting, and the crew is great, but at the moment I simply can't spend hours in front of the computer screen without being able to rest (meaning lie down) periodically. So, that's good bye to paid work for a while.

Also, if things were going according to plan, I would now be sitting on the beach in Ft Lauderdale or Miami, Florida with my family, hugging and sharing stories with my grandchildren. That is not happening. I am sitting in Sydney, enjoying the daily thunderstorms. Well, actually, I sleep through them.

The good news is that I think the new medication, Megace, is working. However, I am always tired and sometimes have trouble breathing. I read some of the side effects, and it said 'adrenal insufficiency'. I am totally devastated. I asked my doctor to not give me anything that affects the adrenals, because I have a problem there already. He agreed. Now, I discover that he had ignored our agreement. I am devastated. Who can I trust? I already have a long list of complaints for when I see him next week, but now I am just devastated. I have to think this through.

It's several hours later and my treacherous body has gone through a number of hoops. First of all, as I was writing the previous paragraph, I was actually having one of my 'adrenal episodes'. I've had these since 1985 and it always appears in different ways, so I never recognise it until it's over, when I shiver and my teeth are chattering. Then, I am happy that 'it was only an episode', and I get a big burst of energy and some other symptoms that tells me I will be fine. This is what happened today, and by 5:30pm I was ready to meet a friend to have dinner and go to the theatre. It was called 'Stories from the Heart(land), a verbatim play performed by graduating students of the Actors Centre Australia (ACA). It was fantastic. Unfortunately, the first half was over an hour long, and I got too tired to stay. Nevertheless, I made it, and I am ecstatic.

So, it's been a very long day, filled with good and bad, but the good won out, so I go to sleep happy.

Sleeping Beauty

One of the first questions doctors ask me is: how do you sleep?  Fine, I say. In fact, sleeping is the only thing I do quite well at the moment, thank you. With all the pill changes of late, the one thing that has been consistent is my ability, nay the need, to sleep any time.

In the past couple of weeks I have become a veritable sleeping beauty. I get tired easily and every time I get home, the first thing I do is crash on the bed and – yes, you've guessed – sleep. Yesterday I was in so much pain from the Exemestane, which I am back on every day again, that I had a bit of trouble with the sleep. But I have to admit that, even with that I must have slept through most of the afternoon and the night.

This morning I had my hair cut. Then, I had coffee with my friend Sue and did a very little grocery shopping, while the lads in the car wash resuscitated my Mitsubishi Mirage to its proper glory. I barely made it to the car, I was so exhausted and.... yes, crash time.

Two hours later, I am up and about. Almost bright eyed and bushy tailed. Well, not quite. My shoulder has just started complaining of pain. My brain wants a break and my garden says: hey girl, it's time to do some weeding.

OK, I'll heed the call. I wonder how long I'll have the energy to liberate the lemon tree from the encroaching grass.

Finally! A full chemo cycle.

This morning I woke up fresh, bright eyed and bushy tailed. Full of energy, I put on some African music and danced my heart out. This was around 9am, just before I was to take my cyclophosphamide pills which, I knew, would change everything.

After four weeks of ups and downs, on Tuesday I was finally able to start a full 3 week CMF chemo cycle. This consists of an intravenous 'bolus' of methotrexate and 5FU first week, intravenous 'bolus' of 5FU the second week and 14 days of 100mg cyclphosphamide in pill form. The third week is a period of rest free from medication. The week after that, it's all repeated. I am told I will have a total of four cycles, and this is my third, so I expect to be finished sometime mid-August.

In the meantime...

I have to cope with...

Soon after I took the chemo pills at 9:45am, my mood changed completely. My lips started tingling, my stomach constricting. My mind was getting foggy and tears poured down my face. Not a happy chappy.  I took notes, because I knew the mood would lift and I would forget the details. So, here it is:

' Just a half hour ago I wrote a note to ... (a friend) to say that I'll live a long time. Now, I have no thought of the 'after'. Just want to cope with the present and get it over with. Half hour ago I was full of hope. Now, I just am. There's no past or future, just the now, and the strange sensations coursing through my body and the coldness of my tears. I can explain it all as a physical reaction to the medication, but emotionally all I can do is scream: THIS IS A NIGHTMARE.'

This is the point where my 'coping mechanism' kicks in and I look for things to do to distract myself from my distress. I think I mentioned somewhere in this blog that I moved house in February, when I was really ill. It's just  a very small, one bedroom garden apartment, where I plan to eventually have a vegetable garden, but I am still unpacking and slowly making the place habitable – with lots of help from amazing friends. So, I've taken to sorting out small things that make life more pleasant. Yesterday I sorted out my CDs and thereby liberated two large stackable drawers that will now be used to help organise my bedroom closet. Today I plan to start copying the CDs to an external hard drive.

'OK, so the tears are gone, but now, instead of the 'lightness of being' and energy, I feel like my body is imploding, like someone is sitting on my chest, my bum glued to the sofa. It's difficult to even make the decision to move. My vision is blurring slightly. I am putting drops in my eyes to stop them burning. My throat is starting to get sore. One bright thought – these symptoms will disappear by evening, only to start again tomorrow after I take the next cyclophosphamide dose.'

It's 11:30am as I write this blog and I am starting to feel better. The sun is shining outside in my garden and I am expecting a friend to visit, so we can go for a walk. It's very important to keep walking and exercising during this period. I am not always able to do it.  The fatigue I mentioned above comes and goes during the day. I never know when it will hit. Yesterday, I walked to my local cafe with friends (two blocks). When we were ready to leave I could hardly walk and they had to bring the car to take me home. And so it goes...