+ Reply
Log in or Register to participate in these discussions
Does anyone else ever feel totally nuts?
I havent introduced myself yet, I have a 5 year old daughter who was diagnosed with high risk Bcell ALL in August 2013. She is in her 4th cycle of maintenance and we're hoping for an end to active treatment this Nov/Dec. She is doing very well, now, but she's had a very rough journey full of infections and complications and reactions. I've been so strong until now. There's been no other choice, but as the end of treatment comes closer I'm feeling more and more out of sync with everyone and everything around me. Its like my brain has been rewired for a specific purpose, and that purpose is fading. How do I move on? What do I do with the months of stress and terror and sorrow? How do I look at the world through a normal lense again? I look at situations now and don't trust my ability to interpret them in a normal way or to react the way a 'normal' person should. I know we'll need to build a new normal... But how? How do I possibly digest and incorporate in to my life 'every parents worst nightmare' in a way that allows me to function with the appearance of normal? How do I make it work?
1 Replies
7 Posts
Hi Librarianage, what you are saying is resonating with me on a couple of levels; first of all, I went through the diagnoses and treatment from June to Oct of last year, including surgery. I sailed through it really, I was calm and focused and put one foot in front of the other, day by day etc. Once treatment was over, I started to fall apart. What do I do now? Where did everybody go? So many people had told me this 'experience' was life altering, I would be changed by it. I kept waiting to feel altered and changed. What do I do with all that energy and focus now? And yes, I felt totally nuts. It has been 4 months now and I am gradually coming around - I am doing it by returning to my day by day mantra and getting back to some long overdue projects. I hope you can do this too...and yes the experience may have changed us in some ways, but I for one am still me. Slightly bruised and with a big scar, but still me.
The other thing that came to mind reading your story is my time at Ronald McDonald House in Vancouver. I volunteered there for several years and found it very rewarding. I met dozens of kids and their parents and got quite close to many. I was a playmate, a cook, a craft teacher and a great listener. The moms talked to me about what they were feeling and going through, but most of all they talked to each other. If you could get in touch with other moms/dads/guardians you may find some with coping tips that will help. I remember they almost all were these incredibly strong, capable, calm people  but they all got a lot of comfort from each other when the kids were in bed asleep.
Just hang in there, think about the successes and don't think you are 'supposed to feel a certain way.' What has happened to you and your daughter is huge......and you are still standing!
+ Reply