Next week is going to be a flurry of motion and I wanted to take a moment to wish each and everyone of you a HAPPY THANKSGIVING!
This is the time of the year that we all reflect on the past year and think of all the things we are grateful for in our lives. Although if I had a choice of going through this journey I wouldn't take it, it still has instilled in me how fortunate I am to have so many friends and family who care about me. It has taught me to "stop and smell the roses" instead of rushing through my days to get to the next one. I have learned I am NOT invincible and need to take better care of myself. I now know that waiting until a tomorrow that may never come is not always a good idea. I have learned to dance and be a participant in my life instead of a bystander.
So as you sit at the dinner table on Thursday and bow your head in thanks, remember that every day should be a day of Thanksgiving and not celebrated only once a year.
Thank you once again for your love, friendship and words of encouragement and especially for reading my scribbles which has become my therapy.
Keep On Dancin'
Friday, November 16, 2012
Friday, November 9, 2012
Friday, November 9, 2012
I often have people approach me and say “My mother/father/sister/brother/friend, etc. was just diagnosed with cancer and I don’t know what to say. What should I do?” Seems like a simple question but with the experience I have with both with my mother and myself I have witnessed things I thought I would never see.
Most importantly be supportive both in words and actions. Let the person know you’re there for them. The hardest time is when you first get the news. Until it sinks in and you get all the information your imagination is running wild. You’re scared and mad at the same time. It’s comforting to know there are those around you who are there for you but it should be on your (the diagnosed) terms. What I mean (and everyone if different) is that some people just want time alone to reflect and gather the strength they are going to need to get through this ordeal. A simple message of I’m here if you need me in the first few weeks is better then a full on attack of being there 24/7. Ask if there is anything they need (i.e. ride to the doctor for support) but back down and don’t feel hurt if they say no. Remember the day before they got the news they were fully functional so wanting to take over tasks such as shopping, cleaning house, cooking, etc. should be put on the back burner until or if it’s needed.
Another no-no is to give unsolicited advice and comments. At this time they don’t want to know or care about your friend Julie’s aunt’s best friend’s cousin who was diagnosed and what they went through. Don’t be overly positive since know one at this time knows what is going on and until you do telling someone they are strong and will beat this with no problem are just words.
Once a plan of action is decided whether it be surgery, chemotherapy, radiation or a combination slowly ease back into their lives asking if there is anything you can do to make things easier for them. If you’re close enough to them you should be able to read them to know if you’re going in the right direction and when to back off. Some people, like myself, may not want to lose their drive to move forward and may not want any help at all. This is their way of coping by living their lives as normal as possible. Others may need a large support group to help them cope. Just remember that just because someone may not need help doesn’t mean they want to be cut off completely. Just make things as normal as possible and dwell on the positive and not the negatives.
Occasional phone calls (remember we have caller ID and if we don’t want to talk we won’t pick up) and greeting cards are always welcome. I still have every single card and note that has been sent to me from my first diagnosis ten years ago as well as those sent in the past two and a half years. When I feel down I look through my cards and they remind me of all the wonderful friends I have out there.
Listen when they want to talk. Stay positive in your comments. They are putting a lot of trust into their team of Doctors and Nurses and the last thing they want to hear is unsolicited negative opinions on why you might think the course of treatments they are on isn’t right because your friend Julie’s aunt’s best friend’s cousin’s Doctors did something different. A large part of getting well is mental attitude and the belief that the Doctor has the experience and knowledge to get you through this. If they simply do not want to talk about it, don’t. Sometimes you just want to forget about what’s going on and have a conversation about anything but your situation. Remember we live with this 24/7 and a little diversion is a good thing.
Lastly – cancer is NOT contagious. It will not bring you bad luck if you associate with someone who has it. I saw my mother as well as myself lose life long friends who couldn’t deal with it. Well how do you think we feel??? We don’t want to deal with it either but we don’t have a choice. I actually had a good friend who said he couldn’t bear hearing or reading about what was going on and still to this day calls another friend for updates. He simply just disappeared from my life. He has lost two and a half years so far that can never be gotten back.
Bottom line – you should know the person and have a pretty good feel for their needs. Using common sense is your best tool. I hope this insight helps in some small way.
Keep On Dancin’
Most importantly be supportive both in words and actions. Let the person know you’re there for them. The hardest time is when you first get the news. Until it sinks in and you get all the information your imagination is running wild. You’re scared and mad at the same time. It’s comforting to know there are those around you who are there for you but it should be on your (the diagnosed) terms. What I mean (and everyone if different) is that some people just want time alone to reflect and gather the strength they are going to need to get through this ordeal. A simple message of I’m here if you need me in the first few weeks is better then a full on attack of being there 24/7. Ask if there is anything they need (i.e. ride to the doctor for support) but back down and don’t feel hurt if they say no. Remember the day before they got the news they were fully functional so wanting to take over tasks such as shopping, cleaning house, cooking, etc. should be put on the back burner until or if it’s needed.
Another no-no is to give unsolicited advice and comments. At this time they don’t want to know or care about your friend Julie’s aunt’s best friend’s cousin who was diagnosed and what they went through. Don’t be overly positive since know one at this time knows what is going on and until you do telling someone they are strong and will beat this with no problem are just words.
Once a plan of action is decided whether it be surgery, chemotherapy, radiation or a combination slowly ease back into their lives asking if there is anything you can do to make things easier for them. If you’re close enough to them you should be able to read them to know if you’re going in the right direction and when to back off. Some people, like myself, may not want to lose their drive to move forward and may not want any help at all. This is their way of coping by living their lives as normal as possible. Others may need a large support group to help them cope. Just remember that just because someone may not need help doesn’t mean they want to be cut off completely. Just make things as normal as possible and dwell on the positive and not the negatives.
Occasional phone calls (remember we have caller ID and if we don’t want to talk we won’t pick up) and greeting cards are always welcome. I still have every single card and note that has been sent to me from my first diagnosis ten years ago as well as those sent in the past two and a half years. When I feel down I look through my cards and they remind me of all the wonderful friends I have out there.
Listen when they want to talk. Stay positive in your comments. They are putting a lot of trust into their team of Doctors and Nurses and the last thing they want to hear is unsolicited negative opinions on why you might think the course of treatments they are on isn’t right because your friend Julie’s aunt’s best friend’s cousin’s Doctors did something different. A large part of getting well is mental attitude and the belief that the Doctor has the experience and knowledge to get you through this. If they simply do not want to talk about it, don’t. Sometimes you just want to forget about what’s going on and have a conversation about anything but your situation. Remember we live with this 24/7 and a little diversion is a good thing.
Lastly – cancer is NOT contagious. It will not bring you bad luck if you associate with someone who has it. I saw my mother as well as myself lose life long friends who couldn’t deal with it. Well how do you think we feel??? We don’t want to deal with it either but we don’t have a choice. I actually had a good friend who said he couldn’t bear hearing or reading about what was going on and still to this day calls another friend for updates. He simply just disappeared from my life. He has lost two and a half years so far that can never be gotten back.
Bottom line – you should know the person and have a pretty good feel for their needs. Using common sense is your best tool. I hope this insight helps in some small way.
Keep On Dancin’
Friday, November 2, 2012
Friday, November 2, 2012
Although I knew I was cleared for chemo on Wednesday I still sat on the edge of the seat until they actually stuck the needle in and started the infusion. It’s been such a crazy six weeks that I was ready for another road block to be put in front of me. Fortunately everything went as planned and I received the chemo.
I did get a call today from the liver specialist letting me know that the test came back confirming I have Gilbert’s Syndrome. His words - “so what”! He said everything else looks good and besides the cancer, my liver looks good.
Also received a call from my doctors nurse letting me know about the results. I asked what does this mean for the study. They have to go back to the head of the trial and submit my results and supposedly get new range for my bili count. She said she would let me know as soon as she heard something. I’m not going to let my guard down until I know everything is set. So I’ll continue with my bland and tasteless diet. Like I told my doctor yesterday – if it doesn’t look appealing and tastes like crap it must be good for you!
I’m still trying to decide whether I should have gallbladder surgery. Dr F said it’s up to me and shouldn’t affect my chemo schedule since I have 3 weeks in between. I just don’t feel comfortable with them poking around near my liver (gallbladder is directly under your liver). I guess I have to think about this for a while before I make up my mind.
Otherwise things are fine. I feel a lot more tired and achy after this treatment. I’m sure my body was getting use to being chemo free and then was hit with a double whammy this week (I also had my bone treatment).
Thanks to all of you for your support and words of encouragement while I was going through this fiasco.
Keep On Dancin’
I did get a call today from the liver specialist letting me know that the test came back confirming I have Gilbert’s Syndrome. His words - “so what”! He said everything else looks good and besides the cancer, my liver looks good.
Also received a call from my doctors nurse letting me know about the results. I asked what does this mean for the study. They have to go back to the head of the trial and submit my results and supposedly get new range for my bili count. She said she would let me know as soon as she heard something. I’m not going to let my guard down until I know everything is set. So I’ll continue with my bland and tasteless diet. Like I told my doctor yesterday – if it doesn’t look appealing and tastes like crap it must be good for you!
I’m still trying to decide whether I should have gallbladder surgery. Dr F said it’s up to me and shouldn’t affect my chemo schedule since I have 3 weeks in between. I just don’t feel comfortable with them poking around near my liver (gallbladder is directly under your liver). I guess I have to think about this for a while before I make up my mind.
Otherwise things are fine. I feel a lot more tired and achy after this treatment. I’m sure my body was getting use to being chemo free and then was hit with a double whammy this week (I also had my bone treatment).
Thanks to all of you for your support and words of encouragement while I was going through this fiasco.
Keep On Dancin’
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