So, to cut to the chase, chemo started today. The first couple of doses of chemicals far stronger than anything that has ever entered me are working their way arond my son's little body, and are hopefully beginning to kill off the cancer inside him. It is a momentous day, as so far, the cancer has had it's own way. Other than surgery to de-bulk the tumour, this is the first real treatment of the disease rather than the symptoms.
Other than that this has been one of the much tougher days, Luke has been in so much pain, it is just like immediately before he was diagnosed (except his legs are still moving at the moment). He is right off his food, so the only nutrition he is getting is through his NG tube. The pain relief always seems to run out before the time for his next dose. He is hoarse from screaming and just absolutely wiped out.
I have absolutely no idea how quickly the chemo will impact on the tumour, and have no idea if the side-effects of the treatment will, in the short term at least, outweigh the physical improvement he may feel from it. I only hope that it isnt this hard all year.
Tomorrow is another day... but before then I have to drive home, do some work and try to get some sleep. I think I have the much easier end of the deal compared to my wife.
Just seen your blog for the first time. What an incredible and horrifying story. I wish your family all the very best in coping with, and beating this.
ReplyDeleteLiz.
Paul,
ReplyDeleteI came across your blog as the result of retweet by Alan Davies on Twitter.
I want to give you some words of encouragement as the next year is going to be tough. You are doing the right thing by getting these thoughts out of your head. You will have to take it one day at a time and continue to seek therapy from the typing of your thoughts. You will need others - when they start saying "If there's anything I can do...", use them! You will need to.
How do I know? I have been through a very similar experience. My son was diagnosed with a brain tumour at 6 months old and was immediately placed on chemo. I understand your pain better than most. I know the screaming, the calpol timetable to take the pain away, the confusion, the "why me?", the blur of trying to carry on with life and work.
While every childhood cancer is different (you've probably already been told this by dr's) there are lots of similarities in terms of what chemo does, how it restricts your life etc. If you want to keep in touch and ask me questions as a non-medic with experience, or just have the reassurance that someone has had the same issues, please let me know here and I'll get in touch through Twitter. If you would rather be left to your own battle, I'll understand. We all deal with this differently. I will continue to think of you and your family as you deal with this.
Simon
Thinking of you today. My daughter was born 12 weeks early so can empathise a tiny bit with the pain and fear you must be feeling. Hoping all goes well and your family finds the rest and support you all need!
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