My Husband, My Life, My Love, My Family, My Cancer
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Rosie- Woohoo!!!!!!
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Rosie, great news on your scan results, that is great!
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yay Rosie!!!!!
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Hey Rosie, awesome news!
thx everyone for the support. I'm still not feeling great but I'm not quite as miserable as yesterday.
I did my onboarding appointment for the radiation trial - just boring paperwork and stepping on a scale. Randomization will happen this week sometime. My brain scan came back clean so there's some good news even if I'm too grumpy to really appreciate it lol
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yes moth that it is good. Very good
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Moth, so glad to hear your brain scan came back clean. I can appreciate that for you for sure.
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Moth I’m glad you got some good news. The cancer radiation news sucks.
Rosie congrats on clean scans.
Mel I have zometa infusion only tomorrow.
Page turned and I can’t go back or lose post so...Waving hello to all.
Tanya
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xgeva and bloodwork today. Feel lousy. Hope all is well with you ladies.
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I got randomized to the standard arm. No SABR for me
I'm so mad and disappointed 0 -
I can understand that. I’m sorry Moth.
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Moth- So what does this mean for you? I am not really up on trials.
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Thank you, everyone. I was very appreciative.
Rosie, great news.
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candy, it means I will get standard radiation to the lung met instead of SABR. In a previous Cdn trial SABR had a survival benefit over standard rads in oligometastatic pts. This trial is for oligoprogression, not oligomets.
nobody knows if SABR has a benefit for this population or not so maybe it doesn't matter but still, I had my heart set on it
SABR would have killed the met. The best he can promise with the standard is that "quite possibly this met will not bother you again"...
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Moth, I’m sorry you won’t be in the SABR arm. That stinks, especially since you actually knew the potential difference. And thanks for explaining the difference. I’ll still hope that met stays gone for good. Great to hear your brain scan was clear and I hope your mental place starts to brighten soon.
Thanks to all for the cheers. I’m more relieved than I realized
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having our heart set in something that has to do with our bodies should be important to the doctors. It’s our body. Sometimes I think they forget that. Inside we are rational thinking adults that got handed the “fcancer” card . Some understanding and compassion goes along way.
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Moth, I am sorry you didn't make the SABR arm.
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Mel, I am sorry you are feeling lousy after xgeva.
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Mara~I adore you!!
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Mel, I adore you too! I adore all of you!
Not sure what possessed me but I woke up, got my cats their food and went straight out for a walk after a cup of tea. The snow melted so I did not need my boots this time but they are still comfy. Walked about half an hour too. It was still not fully light out when I went either. Was just after 7am. Glad that hit me, maybe it can do it more often. I may actually walk a little more, need to take advantage of the clear, dry sidewalks. Not sure what I wish to do today, we will see.
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Rosie- Sorry you cannot get the SABR, but, at least, they are saying the rad you will get should zap the cancer and "possibly not bother you again". That is something I wonder about if I get to the point I want to try a clinical trial. Would I get picked for the placebo in the trial and think "Hey I am in a trial, that is good" and really not be any better off than standard care. I have a lot to learn about trials.
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Well, done walking today as far as I know, did almost 90 mins in 3 different walks. One earlier today, then decided to go to my burger joint for brunch so walked there and back. Had a lot more energy today. For me, I think being active initially before eating seems to help a lot. Might keep trying this. I am staying home now. Surveys, laundry and housework will be my afternoon and evening I think.
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Mara- I admire you. I walked on my treadmill the other day. It is right here in my house. In the comfort of my home. No need to bundle up or put on boots. And I still cannot get motivated to walk on it every day. Much less several times a day. I don't know how you do it.
I did do some light dusting today. And I have a load of laundry to do. It is just me and my cat, and I am neat, so my house doesn't need too much cleaning. I just cannot find enough to keep me busy. Bored and lonely again.
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Moth, sorry about the trial, I understand that it’s a big disappointment but thank you for participating, the results are bound to help in the future.
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Candy, I am no different than you when it comes to motivation. For me, if I leave myself to my own devices, I will not do anything. It is hard to motivate myself. When I do not give myself a chance to think about it, I do better. I had been for the first walk, felt pretty good and decided to have breakfast at my burger joint for the next walks.
I also find I just feel physically better after a walk. If you want to do it, I would initially just do 5 or 10 mins on the treadmill first thing, before meals, maybe after a coffee if you drink it but before breakfast. That can set you up with a little more energy and makes it easier to do other things throughout the day. A couple of 5 or 10 min walks on the treadmill throughout your day can be better than one longer one.
As far as being bored, for me I do surveys, there may be something else you can find to do. I hope so. I am sorry about the feeling lonely, I can most definitely empathize as I don't see people all that often. I usually just talk to the dogs outside that I pass on walks.
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Mara- Maybe I can try your suggestion to get on the treadmill first thing for a few minutes, and then various times in the day for a few minutes. I DO NOT feel better physically when I get on the treadmill. I know people say that activity is supposed to help with pain, but it just makes it worse for me. My low back, hips, knees. Just doing the dusting I bent over and my back spasmed. And when I walk on the treadmill for the 20 minutes, I get off and my knees are throbbing.
I just need to find something to keep my mind active. Alone, isolated in the house, and a fixed income, it is hard to find hobbies.
Hope everyone is doing ok today.
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Candy, if 20 mins is painful, start with 2 minutes a few times a day. Your body could get used to that easier. Move up a minute each week. You can do 10 two minutes sessions and that should be easier on your back. Small and slow steps as well. Don't push to the point of real pain, but the micro walks would even work as well. I had to do this when I tweaked my back badly a few years back. Hold on to something and march on the spot for 2 mins even instead of the treadmill. You don't have to lift your feet up high, that helps too. Good luck.
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Well, I met with my new palliative care folks today, and we had a very interesting conversation. I told them my troubles with the last couple of chemos I’ve been on, and how tired I am with the whole thing. We discussed pain management, and I almost cried. They totally got it. They said I should never have to be in pain, so they prescribed Methodone for bone pain. (Anyone else tried this? I know they give it to drug addicts to help them through withdraw, but didn’t know it was also prescribed for cancer patients too.). I said I’d try it, but I don’t want to become a zombie. They said we would talk every week until I was comfortable with the drug and the dose. They also said there were others I could try if I’m not getting benefits.
I have a PET scan scheduled at the end of December, and depending on the outcome, I may opt to stop treatment and then go on hospice. I know this is not going to be a popular plan with most of you, but I just cannot continue to feel sick all the time. I really have had no QOL to speak of this year. I’m hoping next year will be one I can enjoy, and that any time I have left would be spent with friends and family and not sick in bed until this disease takes me.
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BooBoo0 -
Thanks Mel. I knew you’d understand
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Booboo- This is your life and your decision. You do what you feel you need to do. I stand by you always.
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