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.

Searching for balance

It's been an interesting week: the second week of my first full chemo cycle. Perhaps my main concern has been to establish a routine. I need structure in my life, but I don't want it to become obsessive. This was the week I was trying to establish balance. Not sure it worked.

The stumbling block has been the fact that my reaction to the various poisons varies, so even if I expect to feel a certain way at a certain time of the day, it may never happen. Conversely, if I expect to be a vegetable for the whole day, that will never happen either. For example:

This morning I woke up after a very fitful night of incredibly vivid dreams about losing things or getting lost. (I know, must be some deep psychological meaning there...) After my morning shower my head was perfectly clear and I did my BrainHQ exercises to keep it that way. Following that, I did some Qigong exercises and finished by mapping out some stories I am planning to write. Then, it was time to take the cyclophosphamide pills. Another BC situation. (Remember, previously I said that in my new state BC means 'Before Cancer'? Well, here's another definition: BC = Before Cyclophosphamide.)

Within a few minutes I felt that my face became drawn and there was pressure on both sides of my head. The fog was descending. Or was it?  Actually it lifted fairly soon and only some four hours later did I finally hit the bed and fall asleep for a few hours, after which I felt wrung out for another few hours. It is now around 8pm two days after I began to write this blog entry and I am still not sure that I will be able to finish it. My mind keeps jumping onto other things.

In any case....

Getting back to the week and finding balance....

One of my great discoveries was the therapeutic effect of music to find balance. On Tuesday, the day of my IV chemo was long. I got a ride to the hospital and back by a volunteer driver, but for various reasons she picked me up almost two hours before my 10am appointment. I got home about 2pm. What to do when you are high on steroids and low on chemo poisons?

Physical activity is always helpful to settle a restless mind. But what if the body is tired? Do something mindless that is not physically demanding.  I decided to back up my CDs onto an external hard drive. OK, but then why not just listen to the CD and forget about everything else? That's exactly what I did when I came to copying my wonderful version of Mozart's Don Giovanni.  I settled on my couch and listened to the whole opera cover-to-cover, with Libretto in hand. I happen to have a special fondness for this Opera and listening to it brought back wonderful memories of my childhood in Budapest and teens in London. A perfect way to find balance!

Another day I went for a walk and later did some weeding in the garden. Now, that's really therapeutic.

So, overall, while I think I did and do a valiant effort, I don't think true balance is possible during chemotherapy. I am going to return to taking things one day at a time, not worrying about becoming obsessive, and, hoping against hope, that the 'fog' will lift this time at the end of the treatment and not shroud me for years as it did before.

When symptoms subside

One of the most important things to do during this cancer journey is to stay abreast of what goes on in the outside world. It is normal and natural, I think to focus inward at the beginning, when everything is scary and it feels like your whole world is falling apart. But, when the medications kick in and the physical pain and discomfort fall by the wayside, it's very important to reclaim one's normalcy. That's what I am trying to do right now.

Last Tudesday (4th June, 2013) I had my second dose of Methotrexate and 5FU. My cousin Anna came up from Melbourne for two days, to help me with any side effects, in case my reaction was as bad as the last time. It wasn't. This time, the Professor changed the treatment. I didn't have to take the Cyclophosphamide pills concurrently and everything was given intravenously, including the Prednisone. This way my stomach was spared.

The first day after the chemo, I felt positively well. I remembered the same effect seven years ago, when I was told that the Prednisone helps with the side effects of chemotherapy and can increase one's appetite. I also seem to have had more energy, so Anna and I went for a nice walk. The next day was diferent and I slept most of the time. Sleep was on the main agenda until today, when I drove with my friend Sue to get some errands done and get a coffee at our favourite cafe down the road.

Today, the fatigue is more manageable and tomorrow I hope to be able to get back to doing some work on my writing projects.

One of the proactive things I am doing to get back to normal and avoid 'chemobrain', is to do brain exercises specifically developed to help with this condition. The software I use is called BrainHQ, from Posit Science.  A number of years ago I participated in a study that compared their Insight program to other, commercially available, brain training programs to see which one is more effective in helping overcome chemobrain. I happened to be in the Insight group and found it wonderful. My chemobrain, which plagued me for three years after the chemo treatment, 'lifted' after about 10 months of intense excercise. So, I was really happy to discover that it had been recently incorporated into BrainHQ.