November 8, 2008

I’m back after having been away for almost 3 weeks. My apologies! So much has happened over the last three weeks that we needed to recover from. I have therefore allowed myself a Blog-break. That is to say: until now.

Last time I wrote in this Blog that I had to visit the Neurosurgeon on the 20th of October. The Neurosurgeon was accompanied by the Super Nurse. During that visit we were informed that:
• The Neurosurgeon didn’t like the way we were keeping the wounds on my head clean (we thought we had done great but missed the point (we had received no training or demonstration);
• The Radiotherapy proved not to be successful (the 3rd grade tumor is now growing with the speed of a grade 4);
• The Neurosurgeon and the Neuro-oncologist decided against more radiotherapy (because I received the maximum dose already);
• The Neurosurgeon wanted to make the next step: Chemotherapy to immediately start after the wounds had healed (his perception: in two weeks)

We were shocked to hear so much (and such) bad news. We didn’t expect praise for my wife (because she was keeping my wounds clean) but most certainly also no bad mark for her ability to keep the wounds clean. The pictures below are taken before and after my wife cleaned my wound. Please note the “Grand Canyon” in which you can see my skull.

Before                   After

Before After

And the speed of all of this! I decided that it was to much to handle there and then, I accepted the brochure about the Chemotherapy from Super Nurse and we left. Over the next days we kept the wounds properly clean (where would I be without my wife) and went regularly to the hospital for wound inspections by the Neurosurgeon.

We took no decision about the Chemotherapy yet as we felt that more information was needed. Super Nurse suggested that a meeting with her would be a good idea to get an additional explanation. That appointment took place on the 30th of October. It was a pleasant meeting in which could ask any questions we wanted. We didn’t take a decision about Chemotherapy as we will still have an appointment with the Neuro-Oncologist pending. We have to bring all of the medication I’m taking or that is prescribed for me. I guess that is the right moment to decide about the Chemotherapy.

It’s going well at the RCA with me and I like to meet patients and therapists. Normally I have therapy three mornings per week and those wear me down already. So in the afternoons I normally sleep until dinner (which unfortunately prevents me from sleeping in the night). The staff is very friendly and creative. E.g. last Friday my physiotherapist asked me to work out using regular badminton rackets but with a balloon as an oversized shuttle to practice my right arm and leg. We had so much fun.

Typing still takes a lot of energy (typing, concentration) so don’t expect the next post next week. I will get back to when I have news.



  1. Peter,

    These photos brought home the enormity of your sugical incision. They are a little scary although I am a sqeamish person anyway.

    I think your wife is doing her very best and I hope the criticisms of the cleaning process did not hurt her too much. After all she is not a trained nurse.

    It must seem like this recovery process is taking forver for you. For your readers we look in, leave a comment – then we go away and continue our lives. Where as you and your wife are living with this daily. I admire your strength and send you both my warmest regards.

    Keep on getting better.

  2. Payt,

    I am deeply stunned by the pictures and the “canyon” in your head. It must hurt a lot I think. While I am enjoying my holiday you seem to have all the bad luck. I don’t know what to say.
    The update and the information from the medical doctors and nurse are indeed shocking and I can understand why you took some time to digest this. For me it is unbelievable that a doctor can make a comment about cleaning the wound while they (the medical team) never instructed you or your wife how to do it. My sympathy goes to your wife, I think she did all she could do given the circumstances. It makes me angry when I hear the comments from the doctors…they are like lawyers…always have the right advices with hindsight. It is a bloody shame that this happens to you again and it wasn’t the first time. Man, you must be pissed off, disappointed and/or demoralized by all of this but instead you still continue to fight!
    Taking the Chemotherapy is indeed a big decision and you are right that you wanted to gather all the information first. Especially in an environment where communication between medical staff is a problem; you need to be careful about what and how you decide, I agree. It is stunning to read how they have treated you and I admire your calmness and strength.
    This is where you are different from the rest you’re a hero and realist with unlimited energy. Keep on fighting buddy; you will win this battle!

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: