Radiation recovery
Comments
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Just thought I would peek in and see what everyone was doing. Have been off for a long time. Sick, sick, sick but doing a little better. I have put off my anual mammo this year because of fear I guess. With all that I have been thru I could not take another bad report. Head in sand and I need to take it out. Just reading some posts. Wanted to say hello.
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So glad you checked in Bunkie. We have all wondered how you were doing. So sorry you have been sick. Please don’t delay your mammo. I understand from your post you have had all the bad news you can take but that doesn’t mean the results will be bad.
Share with us what’s going on. Maybe we can help.
Diane
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Mammo clear! Now wait till Friday for all the other test results.
Fruit & veggies all coming in at the same time here. Having a heat wave as well 32 C / 89.6F. Have to be careful in the Saskatoon patch, momma & 4 baby skunks!
First time in 5 yrs that I have suntanned, so far so good, no RRD flare-up. Got to get a base before going to Mexico.
Daughters surgery did not go well. He did balloon on her SOD, caused so much pain she woke up. Been taken by ambulance back to hospital 3 days later, release back home. In so much pain can't move. Wish we could find someone who gives a shit. she may get admitted today.Fingers crossed.
Hugs to all
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Good news Fran! I know you are so relieved. Sorry about your daughter. What’s going on with her?
Have fun in Mexico. We aren’t taking a summer vacation because we have niece’s wedding in October and a trip to Notre Dame for a football game in November.
Diane
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Hi Bunkie, so nice to see you here. Still in the same house?
Fran, so sorry for our daughter's pain. No idea what an SOD might be, but it sure sounds painful.
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Daughter has been admitted. SOD, Sphincter of Oddi. it is the valve that drains the bile from pancreas to bowels to digest food. The gallbladder is like an overflow tank. She had her gallbladder removed 9 yrs ago & ever since her SOD has been in a Charlie horse mode. Little relief over the yrs, can't work, just curls up in a ball, cries, pukes, goes 8 days no food or water, just pukes it up. Drs don't know what to do. GI specialist says it's in her head, & "even end stage 4 cancer patients don't need pain killer, its all mind over matter!!!!!!!!!!!!!!!!"
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I hope that they will help your daughter. Terrible what she goes through, I can't believe a doctor will even say its in her head! Prayers for her.
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Fran - that doctor sounds like a charm school dropout. Good grief how insensitive can you be?
I read something about this after you posted that said having your gall bladder removed can lead to this condition. Treatment could be surgically cutting the muscle. According to this article after having this done 70% of the patients with SOD found relief.
I know she is in terrible pain and has to be frustrated when her doctors have no answers.
Keep us posted.
Diane0 -
She needs a new GI doc. And now!
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How insensitive can a doctor be? Sounds like a charm school dropout.
I read an article about SOD. I didn’t know what it was either. The symptoms are obvious and very painful. This article said people who have their gall bladders removed are at risk for this although it also says the condition is rare.
It also says there is a surgical procedure that could help where the muscle is cut. Supposedly 70% of the people who have this procedure have good results.
I can’t imagine what your daughter is going through and for her doctor to be so flippant is inexcusable.
Diane
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That procedure is called a sphincterotomy
Diane
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It's 5% of us post-gallbladder surgery who have it, or maybe who have recurrent gallstones. Whichever, I have it and I'm in the 5%.
But let me be clear--my experience is nothing like this!
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Sorry Brookside it sounds like such a painful condition. I can’t understand why they can’t do something to relieve Fran’s daughter’s suffering.
Diane
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Saw her yesterday, they have her on new meds. She was sore from all the poking, but feeling not too bad, had a good night sleep, ate some food & kept it down. Late afternoon she ate a pasta salad , sent her into attack. Level 8.5. Curled in a ball crying, They gave her a warm blanket. That's it. She had to wait til 8pm cause that's when her meds were due. She has a whole team of GI specialist that have taken on her case. Yesterday they said there is nothing they can do for her except pain management. We were hoping for a better outcome, nerve block, botulim injection, something. She told the nurse to do bloodwork while in attack, didn't even do that. She had the sphincterotomy done yrs ago. They don't like to do it much because of the risks & buildup of scar tissue. So disappointed,
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Jeez! At least they could give her hot and cold packs! And breakthrough meds. Maybe an IV with a button she can push when she needs more juice?
Has palliative care (pain control) been to see her?
Perhaps if she starts howling and scaring the other patients they will hastily figure out better pain management?
I'm so sorry she is going through this misery. I can't imagine what it must be like for her, and for you. Prayers.
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Cancelled my appointment, I go on Monday now. went to visit KK instead. CJ (her twin) & I waited around for her discharge but Dr Liui of the team couldn't get ahold of her GP regarding her new meds . She was tired & sore, ate pudding & carrot stics, sent into attack. Thank goodness it was close to med time. We left around 2:30. The Drs got ahold of each other around 5. Her GP chewed out the GI team. Told them how frustrated she was with everyone just passing the buck, just handing out painkillers , go home & suck it up princess attitude. Dr Liui is going to get KK into a new pain clinic & to see someone, maybe a radiologist, maybe for nerve block. Glimmer of hope. She is home now.
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Thank goodness! I'm just gobsmacked that they didn't even give her breakthrough meds.
Is it that any fat (pasta salad, pudding) sets off the pancreatic juices and therefore the attacks?
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I think more of spices in the pasta salad versus the fat content. Also the veggies were in a cup with raw broccoli. She can't have that so there may have been a few bit of it on the carrots, also maybe because raw carrot hard to digest. I know she cannot have sage or thyme, therefore no xmas dressing. Certain brands of hot dogs, flaxseed is IMMEDIATE attack, like as soon as it hits the stomach.
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So sorry Fran. I’m glad at least her GP is doing something. Hopefully switching pain clinics will help. Sure couldn’t hurt especially with the doctors she has now.
I didn’t know she had already had that surgery. Dang. It seems every solution has horrific side effects.
I had several doctors throw meds at me instead of finding the root cause and when I went to the pharmacy to have them filled the pharmacist advised me not to take them unless I absolutely had to because of side effects. I didn’t take them.
Keep us posted. Wish we could help.
Diane0 -
Oops! Guess I had the pancreas and gall bladder mixed up. Pancreas is mostly about managing blood sugar and digestive enzymes. With luck, I'll remember that for a while.
Probably a stupid question, but can't they remove the SOD or put a stent in it? And I'd make sure the useless team of GI drones will be sending her records to a few renowned docs. Someone somewhere must be able to help her.
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I'm guessing they do not see her as a candidate for a stent.
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70charger, sorry to hear about your daughter and hope they will find something to help her.
Thinking of everyone here; I haven't been on much; we had a nice little break away from home last week, so quiet and relaxed, and it left us refreshed. Now we're home again, and know it's going to be busy. Wishing you all the best and hope things go better.
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Our group is rather quiet these days. Hope it’s because we are all just busy!
My DS turned 29 yesterday. I’ve already bought him new cleats for rugby but I’ve since added gift cards from DH and I and his dog! We are going out to dinner Sat night for his birthday so his twin boys can go. Our last dinner out at the Butcher Shop for DH’s Birthday was crazy. Jackson, rowdier of the twins, was all over the place and James, quieter one, didn’t want to eat and only wanted daddy. Happens. Previous timesout they were far more cooperative and less wild! They will be 3 next month. Hard to believe!
I’ve been busy at home and with the kids. We are having a cousins swimming party at our neighborhood pool next Saturday. DH wanted to get the kids together other than holidays and birthdays. Should be fun!
Haven’t had a real vacation this summer. Too many costly home improvement projects even with DH doing them but do have a niece’s wedding in October in Savannah and a football game at Notre Dame in November. Both won’t be cheap but looking forward to at least the game.
DH is doing okay with Parkinson’s but I’m sure he’s tired of the trembling. He just manages. Hate it for him.
Last mammo okay thank goodness. 7 years out this month. Friend in South Carolina just got DX. Devastated for her. No details yet but probably chemo.
Have a good week everyone!
Diane
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Hi All, I got a nudge from Fran (Charger) that I had been incognito for quite some time and she was worried, or at least wondering. It's always nice when a group has someone to keep track of people. As we continue our lives past our own cancer, it's easy to fall off the list ......like Josie, and Just Me Janice, and Sab, and Run Free, and Bunkie who did recently check in, and others too, like Joan...how you doing with summer school? As for me, I'm fine. 7 years since my cancer surgery and that's all in the past. Of course, the expected scar tissue lumps and bumps are there but the breast itself is good looking. My regular GP even remarked upon it during my wellness exam this year. Of course, that breast is 2 cup sizes smaller and shirts pull toward the bigger breast, but I'm not concerned with that. My lung inflammation is under control although it's left me with both COPD and asthma, and I'm now on a steroid inhaler full time. The smoke from the massive fires around here aggravated them. My air quality is reasonable as I'm far enough away from the actual fires, but everything bothers my lungs. I still walk daily and do just about everything, just no full-on hiking or hill climbing as I'd be at least 2 days behind everyone else, lol. I've been gardening although nothing like Fran does, and quilting and going on a few knitting or quilting retreats and just enjoying myself. My mom is still with us and turns 100 September 3rd. Amazing. I'm beginning to think she will out live all of us! She looses her words which makes for funny conversations but she's not too frustrated with that and generally just enjoys herself. Who could ask for more?
Fran, hope your daughter has found some pain relief finally, and that you've harvested all your garden produce and got it all canned. We've had amazingly hot weather since early June with no marine layer generally so everything's growing here too. Except my husband's tomatoes.....
Hope everyone is happy and healthy and all those grand babies are doing well
Mostly Sew
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Hi Sew - thanks for checking in. Your garden is beautiful. Are those geraniums in the hanging baskets?
I thought about you with all the fires around you. Absolutely horrific. My son’s friend and family live in San Diego. I don’t think they have been affected.
I hope our sisters do just let us know how they are doing. Congrats on your 7 years too!
Diane
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Pics of the twins in their fav pool! They can’t even wait for us to get their swimsuits on them.One of my son’s friends said swimsuits are overrated! Haha
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SEW! glad u checked in, was wondering how the fires were affecting you. We have had horrible air quality here, Visibility down to under a mile as well. The smoke & ash have been blowing in from British Columbia! Yup that far away. I love a good campfire but after a month I'm craving fresh clean air.
My daughter did Mudhero again this year WOW! 6 klms 18 obstacles! Did I mention WOW! SO proud of her!!!!!
Just have carrots & corn left to do for freezer. I'll do that when I get back, vaca for 1 week, leave on Sat. Need it.
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Charger, I know the fires from here have been getting to the east coast and I just looked up the fires in BC. Seems the west is burning up. Good on your daughter. Amazing. I gather she's got her pain under control which is even better. Happy Vacation
Diane, those boys are sprouting up like weeds.... cute kids. Bet you're just as happy when they go home too, 3 year olds wear me out!
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I definitely am Sew! Love them but they have way too much energy!
Diane
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