Update on me
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Hi Susie,
Thanks for letting us know how your radiation treatment is going so far and I am glad to hear you say that it is going well so far. Hopefully when you see your doctor today you will get some help with your swallowing issues. As to Hyperbaric Oxygen therapy, here is a link that may be of use to you –
Hopefully you will get a call back from the yoga class today! And please let us know how you get on with the doctor today.
My best wishes to you,
Gavin
Susie, I am so glad to hear you are taking the Radiation so well. I love your attitude and it will get you farther than any RX. You are awesome! Even though Teddy and I were in the “older” generation we joked daily. Love and humor will get you far. In fact when I was diagnosed 2 years ago with my own rare Cancer, we used to tease about whose was more rare and etc. At this point I am going to bring up one of Marion s favorites. Teddy was wearing his CC bracelet and we were out to dinner with a couple from Milwaukee. The guy pointed to the bracelet and said, “Teddy, what is that”? Now keep in mind Teddy could NEVER pronounce it. He replied, “Oh, that’s what I have, Angelo Carcinoma”. I thought I would explode in laughter but would never embarrass him that way. Just thought to myself, ‘leave it to my Sicilian to make it his own Sicilian disease’!!!! Keep on laughing and joking you are wonderful!
Susie…..I have learned that mucosa of the mouth and throat, fast multiplying cells equal to tumor cells, are prone to damage with radiation. It is a temporary situation and usually disappears two to thee weeks after completion of treatments. Avoiding spicy, very hot foods and beverages, and alcohol is supposed to help as is gargling with aspirin dissolved in warm water. Please, share with us what your doctor says.
Good luck and best wishes,
MarionHi Susie,
I’m glad your radiation treatments are going well. You are an inspiration to others with your positive attitude. My sister and I are always making jokes about the difficult situations we have gone through over the years; we figure that the joking is what has kept us sane, or we both would be in the nut house by now. Continue on your path and may God light your way. Hugs, PeggyP
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
So, almost 3 wks into radiation and so far so good. It feels a little weird when I swallow, so I will talk to my doc about that tomorrow.
I went to the support group and it was a little sad and depressing. Lots of different young people with lots of different cancer. No other CC patients or even any type of GI cancer.
I’m still trying to get into Yoga. I’ve left 3 messages and no return call. One would think if you leave a message saying “I am a cancer patient and would like to register for the Yoga class for women healing from cancer” that it would warrant a call back, but apparently not.
Another thing I’m going to ask my radiation oncologist is about getting hyperbaric oxygen treatment to prevent radiation injury. Any thoughts or experience with this??
Have a good night, everyone!
SusieThat is funny, Andrew, my sister and I make inappropriate jokes about me dying all the time. And we do get quite a chuckle out of them. But, no, not everyone can handle that sense of humor.
It is not so much the dying part or recurrence that has me interested in a support group, but it’s more so to meet some people my age who can relate to what I’m going through.
Take care!
SusieHi Susie. I think my sister qualifies as a young person (32 at diagnosis, 34 presently), at least for CC it seems she’s a young person. What has worked for her is a darker sense of humor. Joking about death and dying as a method of coping with the legitimate prospect of it seems in poor taste and incredibly morbid (at least that’s what our friends say) but dispelling some of the fear in death/dying has been a boon to her psyche; Jokes and focusing on procedure and protocol to give her the best chance at survival. Although, we have tapered the public joking a bit because our friends are uptight and haven’t loosened up… maybe don’t be so brazen with the joking
+andrewSusie
Like Jim, I’ve got the all clear almost 18 months now – but I get a bit worried about a recurrence from time to time. When I catch myself thinking negatively, I just have a quick chat with myself and try and think about something positive. To fight this cancer, we need all the help we can muster and joining the young adults support group is a great idea.Go luck
Gerry
Susie, I’m an old fart, so young adult support groups weren’t in my future. I had a resection 4/09, and so far, am clean. I had six months of adjuvant Gemzar a few weeks after surgery. I’ve gone through a recent period of uncertainty (increasing CA 19-9’s and slightly elevated bili numbers), but that seems to be resolving. Our plan is to have PET/CT scans at 3 to 4 month intervals (instead of six months), and to have hepatic function and CA 19-9’s done monthly for the next year.
I can tell you that the further out in time from your resection that you stay clean, the lower the chance of recurrence. I pretty much count on a great family plus a few cancer ‘buddies’ as support vehicles. I can also tell you the anxiety level moderates a little as you go out in time, but to be honest, the recent blood test anomalies had me more than a little cranked. My onc, very sensitive to this, told us immediately of the CT result as soon as she entered the exam room in August. My reaction was equally immediate: a hug and kiss for onc Abby. I just had another scan last Wed. and it was clear also. I guess you just need to try not to go over the edge with every bump in the road. Being young also has benefits in terms of resilience. If you are as lucky as I’ve been, you will meet some really fantastic people along the way, beside some of the very best doctors, nurses and techs, that you never would have known if it hadn’t been for cc.
While the odds aren’t great regarding recurrence, you have to proceed with the presumption you’re going to be one of the lucky ones. It’s also good to have a well crafted followup plan.
Good luck and nothing but great scans.
Hi Susie! IT is so good to hear that you are doing well with the Chemo and don’t call Susie a grump! Yes, please take one day, one thing at a time. I don’t see any harm in trying a support group, ya don’t know if ya don’t try. If you feel its not for you then you are free to let it go. Everyone is different and what works for one may not work for another, its all about you being comfortable with it and enjoying it. Keep up the good work and please keep us posted.
Hi everyone. I started radiation about 1 1/2wks ago. I also take Xeloda twice a day. So far so good. No side effects. The first radiation treatment freaked me out a bit because I wasn’t sure what to expect, but now it is fine. I have the same techs every time and they are sweeties. I find myself worrying about the long term side effects of radiation. If, I’m lucky enough not to have cancer recurrence, I fear bile duct strictures and stents will be in my future. Oh well, one thing at a time, right?
Also, I get my treatment at OHSU and they have a Young Adult Cancer Support program I am going to give a try. It meets twice a month and I think it might be helpful to me. It deals with issues that are specific to young adults, that I have been struggling with, like working while undergoing cancer treatment, fertility issues etc. So, I’m looking forward to it. I feel I am becoming a bit of a grump! Also, they have Gentle Yoga for Woman Healing from Cancer, so I’m going to give that a go as well if there is room in the class.
Anyone ever done any support groups and were they helpful?Best wishes!
Susie
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