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15 hours ago
15 hours ago
First let me commend you for your post. It is great to see you open the door for your daughter to reach out. I don't post often, or for that matter come back to the site as much as I should but your post resonated with me.
I am in the unique position of being in both rolls, 1) being a patient of breast cancer and 2) watching my 12 (at the time, 14 years now) of coming down with an illness that I had no clue of what it would do to her or what I could do to help her. I know the terror of feeling that you will not be around to raise you 7 and 5 year old children and the terror that you might lose your child. They are both very dark places to be in.
I got my cancer diagnosis when I was 46, I am now 55 and will be cancer free for 10 years at the end of June. When I was diagnosed I felt like I was hit by a Mack truck. I lost 25 lbs because I stopped eating and I walked (so much nervous energy).
I also was lucky (if that is the right word) that I had a counsellor in the wings. Ten months prior I had lost my dad to lung cancer and I had started seeing a counsellor there to help with my feelings as I was the principal caregiver for him. When I was diagnosed she was there for me almost immediately. Counseling may be helpful for both you, as a caregiver, and your daughter, as a patient. I remember telling her how everyone kept telling me I had to stay positive. I WAS not all positive at that time and people telling me that only added to my agitation. She told me that there was no science based evidence that lack of positivity would hurt your chances of recovery. She said being positive just made it easier on the people around you. That statement made an impression on me. I had 2 young kids and a terrified husband. I made my own call on whether I would be positive or not going forward.
But to be honest when I was on chemo I did not do much. I was pretty sick, ended up in the ER on the evening of the first chemo because I was vomiting so much, and I ate whatever I could (not necessarily the healthiest of diets) as I always dropped 5 lbs in the first 2 weeks then ate like a lumberjack during the next 2 to bring the weight backup.
It wasn't until I was done all my treatment that I started to exercise. Then I used an elliptical and literally exercised (worked up slowly of course) for up to 5 hours a week, like the research suggested.
I fought for a BRCA test and came back positive for a BRCA 1 mutation so I had a few procedures. Hopefully they have suggested this test for your daughter, if not I strongly suggest she get it. This allowed me to have additional procedures which could give me further piece of mind.
After she is done her chemo and radiation she may feel more up to moving around, as buttonsmachine has suggested. But in the meantime I hope you are looking after yourself. As I said previously I know the terror of being in both shoes and the terror of potentially losing my daughter was in some ways worse. Because while I was on chemo and radiation, even though I had no control over my cancer, I still felt like I was doing all I possibly could to get better. When my daughter got ill I felt so much more incredibly helpless...and that is something coming from a stage 3 BRCA1 positive breast cancer survivor. Please take care.
6/13/2011, IDC, 2cm, Stage IIIA, Grade 3, 4/11 nodes, ER-/PR-, HER2-
6/30/2011 Lumpectomy: Right
9/15/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxol (paclitaxel)
2/21/2012 Breast, Lymph nodes
3/14/2013 Prophylactic mastectomy: Left, Right
5/21/2013 Prophylactic ovary removal