let me start by introducing myself in terms which may make sence to you. I share something in common with you: we are both trying to come to terms with death. In your case your own, in my case the death of my wife. Last month I lost my beloved wife to a brain "tumor", specifically it was a type 4 glimoa (it is interesting how the doctors are reticent to call it cancer).
I can not begin to express the level of devastation I feel at her loss, in particular because she was taken from me so suddenly and unexpectedly barely 6 weeks ago. Seldom are two people as close or as closely matched as we were. Although she was Finnish and I Australian we met in South Korea and have been inseparable for the last seven years. We had both looked all our lives to find just the sort of partner we found in each other.
Her loss to me is the most heart wrenching experience in my life. I lost my father to cancer barely one month before my wife and had myself been through major surgery with the discovery of an aneurysm on my Aorta and surgery for that back in November. My lovely wife stood by me through all this and was my primary source of comfort, strength and inspiration to become strong and healthy again. As we were planning children it was quite important for me to get up and running fast.
Through all this she had that disease eating at her and we just didn't know it. So I feel that I can grasp the situation you are in as well as understand the emotions you are feeling.
With all this in mind I am writing to you for two reasons:
- to encourage you to focus on one of the most important things - that is your family and the love you have for each other now.
- to offer some caution about the path you are taking on the experimental treatments: primarily because it is uncertain in outcome and may cause you to take your eye off the ball for the first point above.
The love you have of your family is the most important thing you have. When you write:
Would I risk it all for the chance to see my daughters go to school and to hold my wife's hand as we celebrate our 10th wedding anniversary, instead of forcing them to watch me die, tubed up and in pain? Hell, yes!I see the very strong possiblity that you are at risk of struggling so much to get extra life as to be ignoring the life you have, putting them off during that and ignoring the strong possibility that the treatment itself could leave you exactly forcing them to watch you die.
I have thought long and hard about the circumstances of my darling Anita's death. As painful as it is to say I am sure that I would not have swapped another 3 or 4 months of her undergoing treatments, being debased and dehumanized as only long term treatments in hospitals with steady declines in health can do to you.
I know this as I have seen it.
It is admirable that you fight for your life, but please (for your families sake) don't loose sight of the really important issue here: Human Dignity and Love
Death comes for us all, and who knows when. I would have never anticipated my wife dying days after she stepped off a plane in Finland to visit her family. It was like the shock of some sort of car accident, only worse in some ways as there was no one else to blame. I won't waste your time discussing my personal search for understanding how or what I could have done differently to make things different, save to say that its a natural grieving reaction and I'm still in the midst of it. So don't let your struggle cause you to live one second less of the love and beauty of your family. For when you are gone it is that which they will have to remember.
As some one who has a background in biochemistry and has some experience with the medical system I beg you to keep in mind that miracles of science may not deliver more than more anguish.
I know that I am no one to you, but should you ever wish to contact me I am willing to share what I can and listen to your own story.
Kind Regards, from Anita and Chris