Birdsperch: November 2010

Too Much

The past weeks it has been too much for me to write my blog. I have needed all my energy to focus on getting better. too much has happened to write it all down here but I will try:
After my visit to the hospital for my first check up after the RFA I really needed time to recuperate. After a couple of days I picked up my Physio regime again and found myself standing in no time. I made a little progress and actually got to the point that I took twelve steps again. The strain was huge though and every time I tried something new in exercise I found that I was straining a muscle elsewhere. I have been able to maintain the standard but I haven't actually made big steps.

My visit to the hospital didn't really enlighten me. They haven't a clue why I am in so much pain. They did tell me that they had only seen this reaction once before and that I should assume that in good time the pain would deminish. It did in the end but it took weeks. And I am still in pain, but it is less excruciating now. The morfine-like drugs are now for permanent use. Couldn't manage without the painkilling effect.

Too Little

The over all change has been too little. The huge cramps I had before had been replaced with areas with loss of sensation and other areas with more nerve pain. On a whole it did become easier to move. However there was too little to work with to go back to Rehab. Dr. Bussemaker from the Trappenberg's attituded turned right around. She has been in close contact with me since then and has been willing to help in many ways. I myself at one point had to say that at this rate, there was too little potential to move ahead to rehab. I decided that for now I would do what I could at home, so that I could at least be with Kiara and we will see what the future brings.

This meant that my family had to step up to the plate. Mom and Melvin (my brother), take care of me alternately. We are talking about 24/7 personal care which was only taken over for a period of 2 weeks by Adrienne my sister who was able to come over from France. The rest of the time Mom and Mel have had to put their lives completely on hold. Once again the social system in Holland has failed. For this kind of professional care at home I need to be declared terminal (that means that the procedure of dying has started) before I am entitled to the hours of professional help. If I am not terminal I have to go to a special home where I could get the care that for instance old folks would get. Those are the places where they give you precisely 3 diapers a day because more would be too expensive and rather than help you clean up after every bowel movement or pee, a diaper can reduce the amount of times that they actually have to work at your bedside. The Physical therapist would only come by 2 times a week and would most certainly not be concerned about getting me back on my feet. And what about Kiara. I will not have her living in an old croney's home. I don't have a huge stash of money hidden anywhere so...this is how things work out for me which is less than satifactory. We get help from Buurtzorg, a fantastic organisation and trained nurses come in every morning to wash me and check up on me. My GP has become much more involved and has taken over the general coordination.

Too Late

It is really too late to mention everything else that has been going on here. Besides caring for me, the family has gone to great lengths to clear out my house. When you are as sick as I have been the past 4 years you never get around to clearing stuff out. Slowly but surely your house changes into a warehouse where you can hardly breath. I got rid of so much junk that I think it filled two minibusses. My house looks much better, also thanks to all the help my friends and twitter friends gave me to fix up the outside. I was given a value statement 10K euros higher than before things were fixed up. This made it possible to get a good deal on my mortgage for my new house. I now own the new property! Funny cause the notary guy actually came to my house! (will post the pictures later)
A special mention goes out to the Suiks the Van Geenens and @Jettemetet and @Emhateha who spent days of there spare time to get things done. Many more friends helped out in the course of about 6 months to make things possible. Many of them were people that I had never met in real life but knew from Twitter.

Another wonderful thing that happened was Jocie Zara and Helena's visit. That was one huge trip down memory lane. Jocie and Helena are my primary school friends from when I lived in Tunisia at the end of the 1970's. These amazing friendships have endured the years, the constant changes of addresses and the huge distances that we have been apart from each other.
What is so remarkable is that you hardly need words to communicate because you all know exactly where you're coming from. This feel-good-sensation made me reallize that this was the feeling that I had so much been craving in my relationship with Marcus. And to be perfectly frank, I never did feel that. It gave me great comfort that that which I sought after, I already had. Friends who love me and who are willing to take me as I am. This picture was taken by Jocelyn. To me it illustrates that she was willing to put her fear aside to look at my fragility. Marcus has moved on and doesn't even pass by or give me a call anymore. His new girlfriend Nance makes sure that she posts enough information on her Facebook so that I know that she is already moving in with him. Well, what can I say...Good Virtue? I don't really think that I have lost too much, maybe just an illusion of my own that I had a partner who was willing to support me. NO! The best support has come from my amazing family. Due to my illness Mom and Dad have been driven to live apart for over 3/4 of a year. Understanding and love is glueing this famiy together. Cancer, if you let it, will not only kill you but it has the the power to demolish every form of relation, love, or security that we all need so badly. It is truely amazing, but also so painful to see that the seams at which my family is stuck together are as thick as solid wood. Cancer is devastating. Some times you just want to give-up so everybody else's life can go back to normal. The great paradox though is that if I die, their lives won't be normal ever again. So I keep up my fight, not only for myself but also for them. So Marcus, this once for you:

By far this has been the hardest post to write which is why it has taken me so long. Not only that, I really needed all my energy to get better. I need more space to inform you how I am getting along medically but will do so in following posts.

There is one little person that have got to mention. With all these things going on, Kiara has held up so wonderfully well. She has the capacity to deal with each hard blow that she gets. In the midst of many painful moments, Kiara keeps following her own course, bringing home straight A and B report cards and excelling in her Capoeira classes to a level at which she can now train with the adults. She is so proud and self assured that I can hardly believe it! In my eyes she has done a wonderful job in absorbing everything that I ever hoped to instill in her. After all that is what us parents try to do. At some stage you hope that they have reached a level at which, as a parent, it is safe to say that your kid will be OK and it will manage in life. This is crucial if you are this sick and you are not sure how much time you have left. Kiara is doing well and it is such a huge gift to be able to be home with her and still being able to be a mother to her. I truely feel that Kiara has already learnt so much much from life, that 'Yes!' she WILL be alright. My little sunshine propels me to keep moving on.. come on Mom, hang in there.