You don't know how I feel

'I am sorry, but I am NOT clinically depressed!' - I screamed in my head, as a friend (not the first, nor probably the last) who suffers from clinical depression veered off into a description of her condition as a way of empathising with me, and to 'make me feel better'. She was not to know that this was the last straw for me. I am tired of people trying to comfort me, either by telling me that I have something similar to what they do, or by telling me that my situation is not so bad compared to theirs and go into great detail about whatever medical conditions they have.

I have finally had it. I have my own problems and I am not strong enough to listen to others' ad infinitum!

I have not been well at all since July or August, when the Exemestane stopped working. We have tried several combinations of pills: Everolimus alone, in combination with Exemestane, lower dose of Everolimus and now this Megace. Either they don't work, or they work, but the side effects are unbearable. I live in limbo, floating from unpleasantness to unpleasantness - mostly sleeping. With this Megace I sleep 6-9 hours a night and then have 4-5 hours of naps during the day in small increments. And when I say nap, I mean I get so sleepy that I am off with the fairies as soon as my head hits the pillow. I can barely walk. I have difficulty getting up from a sitting to a standing position, and with Megace I sometimes have difficulty breathing. I have trouble driving at night, so I go out only when I can get a ride. Yesterday I realised I get too tired in large crowds, even when it's people I have known for years and really want to catch up with. Yet!

I keep my calendar active. I diarise every event I am interested in attending. I am active on social media and the phone. I stopped buying theatre tickets, but if I must, I do. The reality is that I am fully engaged in life, but in small doses. I am tending my garden and hopefully will start going back to swimming again this week. I did do some qigong a couple of times last week, and I continue to focus on my social justice project.

I really don't see how my symptoms are similar to clinical depression! My brain is a bit foggy, but we've been there before, with 3 years' of chemo-brain. That's why I do brain exercises BrainHQ and Lumosity, so it won't get really bad. Actually, it is quite fascinating how, with Lumosity, you can track your brain function changing with the different medications. (Yes, it's fascinating for an ex-science/medical writer).

I am getting tired of people trying to analyse 'what's wrong with me' and telling me that maybe the Professor is not so amazing after all. Well, that sometimes does go through my mind, but then this week I remembered a similar situation, when I had very strange symptoms and it took 35 tries to find a medication that my body would tolerate. That was almost 30 years ago and I am still here, and the medicine still works for that problem.

The memory of those times brought into focus very clearly that I am going through the same thing. My sensitive body is rebelling against the onslaught of heavy medication. Eventually, we will find the right one, and until then, I just have to manage the best I can. For the first time, it really forces me to make those end-of life decisions that I have refused to face. Actually, that part hasn't been as hard as I thought it would be. It's been very enlightening, and I am at peace with it all. Now, it's learning to accept how other people react to my condition that's proving so bloody hard to deal with.

The truth is that I may live anywhere from 1-20 years and life it still beautiful. The devil is in the detail.

Doing the Limbo dance

I just posted something I wrote earlier this year. Why now? Because I forgot to post it and things have been pretty hectic since then.

Yes, things have progressed pretty well so far this year.

First of all, I am back at my temping job on a regular basis, although I have still not managed a full six hour shift.  I do phone interviewing for the NSW government's Population Health Survey. I've been doing it for 10 years now. It has very flexible hours and the people are great. It's an interesting mix of students, professionals between jobs or in the throws of career change, housewives with small children and grandmothers with various health issues like me. Originally I started to work here when I was working on my never-to-be-completed documentary, just to make sure that I have some income coming in while I spend all my money on research and development and writing a sci-fi screenplay. When the documentary fell through, and the screenplay got only a 2.5 star from a Hollywood reader, I continued 'until I re-establish' my freelance writing business. Well, the proverbial sh...t hit the fan with my first cancer encounter in 2006. I stopped working and the lovely people at NSW Health received me with open arms when I returned a year and a half later. Their support and the knowledge that I can go back any time, has been really helpful in not losing my link to the real world during all my travails. So, I am back. I try to work three 5 hour shifts a week, but I don't always make it, but every bit helps.

And while we are on the job front, I also have a freelance editing assignment, so I think I can safely say that I am back in the saddle as far as work is concerned.

On the health front, I am still madly doing my brain training exercises and I am happy to report that, according to Lumosity, I am in the 99th percentile in brain performance for my age group, so it seems that my brain is back from the chemo fog for good.

On the not too optimistic front, it seems that, while the cancer is improving - meaning that the abnormal level of the cancer marker in the blood is lower - it has not gone back to normal, and my understanding now is that the doctors are not expecting it to go back to normal. I got this not from the Professor, but his stand-in during my last visit, when the Prof was incommunicado due to a knee replacement.  I am going to see him in two weeks, when I will double check. In any case, the current prognosis seems to be that the Exemestane is controlling the cancer for now. If it stops doing that, then I will have to have more chemotherapy. And this on and off chemo may be for the rest of my life, which can be anyone's guess how long. As I've said somewhere before, I am told that people live like this for decades. And can I get the abdominal port out please? No! Apparently that can stay in for more than a decade also, and while it was easy to put in, it may be tricky to take out.  I'll have to check that one too. Having talked with the new oncologist, I am not sure whether they want me to keep it in because it's complicated to take out, or because they expect me to have more ascites down the line. Neither possibility is very comforting.

In fact, this whole bloody cancer 'journey' (I hate that expression - a journey is a joy, this is a nightmare) is not very comfortable. Unfortunately, it looks like it isn't going away, so a couple of months ago I decided to do some things differently to be able to cope. As a result, I enrolled myself to get help for my post traumatic stress disorder that I had acquired way back when, as a child refugee and other various places. The reason being that I want to clear my head from past garbage to be able to focus on dealing with the cancer in the future. Three weeks ago I started the evaluation process with STARTTS, so I am in the best hands for both my physical and mental health. It's a pretty cool feeling, I must say, and feel I can dance the limbo for as long as it takes (remind me I said this when I start complaining again!)