pamela
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Trevor,
I don’t know what I would do without this site. Not many outside our little family here understand or have ever even heard of this cancer. That is why we all need to stick together. My daughter, age 25, has this cancer. At first, I had a hard time dealing with this website. It was too painful. I have since gotten used to it, and look forward to becoming more informed every day. Have you ever thought of blogging? I set up a caring bridge blog for my daughter and it really makes me feel better to write about what she goes through. Just a suggestion that helps me. Take care and I hope you find something that makes you feel better.-Pam
Margaret,
Sorry you had problems today. Marion, thanks for all of your wisdom. We had two things that weren’t done right since this whole cancer thing started. When Lauren had her biopsy, everyone kept telling her it would be a piece of cake. Her IV didn’t seem to be working really well. (This was before she had her port.) They gave her something in her IV to numb the area. When they went to do the biopsy, she said it was like a needle going through thick, tough, steak and it hurt worse than anything she ever felt. I don’t even know if she was numb at all. When she got back to recovery, she was crying so hard because it hurt so bad. The next bad thing that happened was when she went to the lab to have her port accessed for the first time. The tech that stuck the needle in didn’t know what she was doing and stuck the needle beside and under her port. Lauren told her it hurt really bad and it hurt to breathe. The tech went and got a nurse and the nurse said if it hurts that bad then it isn’t in right. The nurse then put it in correctly. This was in a lab at the cancer center where most patients have ports! Well, you better believe every time Lauren goes to the lab, she requests the nurse that can do it correctly. It’s too bad our loved ones have to suffer at the hands of others, but in some ways it makes us more aware of things. Have a nice weekend.-Pam
Hi Margaret,
What is your tattoo of? I can’t get it to load. Good luck tomorrow with the chemo. My daughter, Lauren is also on 5-Fu. She gets it in a pump over 48 hours. She is also on Gem/Cis. She gets really tired for a couple of days and then bounces back. I am concerned about her platelets, though. They seem to drop more and more each time she has labs before her chemo. I asked them if there was anything we could do and everyone says no. Oh well, take care and best wishes.-Pam
Hi Susie,
I commend you for trying to do everything you can to be healthy. It upsets me that nobody will call you back about yoga. I think it would be hard to find a support group that would have anybody with this type of cancer since it is so rare. That is why I love this website. Everyone is so friendly and encouraging. I am happy your radiation is going well. As for the hyperbaric oxygen treatment, if your oncologist feels it would help I say go for it! Stay strong and god bless you.-Pam
Dear Theresa,
I think it is so awesome that your daughter shows up when you need her. She is like your little guardian angel here on earth. Maybe your husband somehow let’s her know when you need her. I am glad you are doing better. Take care and remember that a lot of people care about you.Love, Pam
I get so much comfort from all of you. I don’t know what I would do without your support. Thank you so much for caring. Besides my family,you are the only ones that truly understand what it feels like to go through this. Susie- Lauren has an MRI on Nov. 1. Well, it is off to bed for me. Busy day tomorrow. Stay strong everyone.
Love, Pam
Thank you all for your kind and inspirational words. Well, two weeks have flown by and we will be making the journey to Michigan tomorrow. Lauren will have her fourth round of chemo on Monday. Sure hope it is working. Bless all of you who are suffering from this disease. My prayers are that you will get well and live a happy life.
Love, Pam
Dear Theresa,
I read your post the other day and felt so terrible for you. I was afraid to say anything to you and I am sorry. I didn’t want to say something that could have made you feel worse. I felt you needed more professional advice than I was able to give. I realize now that all I needed to say was that I care and that might have helped. I am sorry and I do care about you. I hope you are able to find happiness one day.Love, Pam
I am happy she is out of ICU. Prayers for her are coming from me. Hang in there hopeful daughter.
-Pam
Great news Lainy! I am happy for you. If you don’t mind me asking, what type of cancer do you have? I will pray for it to stay stable or get better. I would rather you got better!
Love, PamLainy,
I absolutely, positively love you. You are the best!! You always make me laugh no matter how dark my day is. You truly are a gem. Thank you so much for being you and taking the time to brighten all of our days.
Love, PamDear CM and Jenny,
Ever since my daughter was diagnosed my world seem different. It seems like the whole cancer thing is on my mind 24/7. It is nice to have a place to come to where people feel the same. It makes you feel like you aren’t crazy, but actually quite normal. I think people that aren’t in our shoes as caregivers, patients, or family members can’t understand what we really go through no matter how hard they try. We, here on this discussion board know exactly how another person feels as soon as we read their post. I sure find comfort in that. I wish you both happier days ahead.
-Pam
