Calling all TNs
Comments
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Annie, - may your treatments go smoothly and be easier than you think! I hate that you are dealing with this, - SO UNFAIR!!
Years ago, my dearest friend was given a dire prognosis of stage 4 pancreatic cancer, and had appts with 3 oncologists. The first 2 gave her awful time frames, the 3rd told her 'no one has an expiration dated printed on their forehead', and no one should give her one! She opted to be treated by this kind, wonderful man. She lived on for 9 years, - long after the time frame told to her by the other drs who were so discouraging.
Do what ever makes you feel comfortable. Your family sounds as wonderful as you are!
You are admired and loved by so many, near and far!
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ally huzzahs and congrats on your baby news. That is wonderful.
Cocker so good to hear from you and that you have a treatment plan. Know that we are all here for you, hoping, and praying for you to feel better and have your chemo knock those nasty cancer cells out of you quickly.
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Well ladies the day has almost "finally" ended and I have to say it went well. My nurses were exceptionally brilliant and never left me alone although I was very weepy with fear. I haven't got a port. Megan one of the nurses got me a big bowl of hot water and gently placed my hand in it for about 5-7 mins and when she dried my hand there was a beautiful big vein with lots of blood. She withdrew the specimen for my kidney check and electrolytes which went off urgently and then got me ready for the chemo. She stayed with me once it started flowing to make sure there was no reaction and although my old feller was there with the buzzer they checked on me constantly. All went smooth except I was extremely tired and even went to sleep at one point. We arrived at 8am and left at 2pm. I rattle with so many tablets in side of me but all in all it was a good day. And of course not without its humerous side. My hubby stopped at a couple of shops where I wanted to pick up some Christmas presents. He pulled up got out the car went in and got them, popped them in the boot and I didn't know he had done it zzzzzzzzzzzzzzz About 20 mins from home I awoke briefly and said Alan I think I have wet my pants. He said don't worry we are not too far from home and I'll call in at the supermarket and get you some poise pads. Back to the zzzzzzzzzzz for me. When we pulled into the garage he said I got your poise, again without knowing he had done a heap of shopping and I didn't hear and thats when I said I don't need the poise. He said yes it wont bother anyone and nobody needs to know except us. That's when I said the top of my FULL water bottle top had come off in my big hand bag I had on my lap and the water had soaked right through to my undies. We both laughed so much. I was so tired and didn't feel like a full dinner so the nurse had told me to eat what I wanted and how much I wanted over the next few days so it was a slab of pavlova yum, pears, cherries and a heap of cream. I ate the lot.
Tomorrow is another day though not only will I feel very fatigued but I have to take six chemo tablets over the day and then the next day. They are like miniature bombes and with the mouthful of ulcers that I have tonight and the fact that I can't swallow at the moment or drink a glass of water with them is going to start the darn fear off again. Not only that but if they make you sick within the hour you have to call emergency. So they are out for me. I am going to ring my lovely nurses and see if I can get them into injection form at my local hospital or my doctors rooms and see how I get on with that. Even my ice popsicles are now a problem cause when I suck on them they make my tongue bleed so I'm making pretty patterns on the white ice.
Well I did get through it with all your wise, encouraging words, love and you being in my pocket. I don't suppose one of you took the top of my water bottle whilst you were in there - did you? Love you ladies so much and I'm so pleased you are coming along this great journey with me. xx
Maryann thank you so much for your kind words. You don't have to say anything Maryann just knowing you are along here with these ladies with hugs is enough for me and I thank you so much.
Another that is a remarkable story and I have never ever known anyone to live for 9 years with pancreatic cancer. What a beautiful doctor she had. By the way there is no expiry date on my forehead at all. I am waiting for three little bubs, my great grandchild, my Ally's little bube and our Mikes little grandson. Also I would like my 50 red roses for my 50th wedding anniversary from my old feller on October 28th and if I am very lucky I may even make another Christmas with my beloved family and my brilliant friends on here.
Goodnight Ladies sleep well and in peace. Love you all. xxooxx
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Hi Cocker,
Don't look at me. I didn't open that bottle. I was busy praying for all of us.
You're a very likeable lady. Full of wisdom and humor. Never boring. Get a good rest for tomorrow and keep killing all those nasty cancer cells inside you.
We will keep on praying for you.
Gina
PS,
Can't you cut the chemo tabs into small pieces so that you'll have an easier time swallowing them? Just a thought.
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So glad you made it thru today, with the help of your dear husband. Laughter is strong medicine , so glad you had some today!
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Hi Ladies (and the few gents!)
Just checking in and flicked through the posts.
Annie - thoughts and prayers are with you of course.
Ally - wonderful news! Sleep now, because once you have the baby that goes out of the window!
Alhusband - congrats to you also!
Merry Christmas to all if I don't get a chance to drop in before then.
Love, hugs and kisses
Tom
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Cocker, thanks so much for checking in! I'm glad it was a good day in spite of what you had to do. I love your sense of humor! Thanks for making me laugh!!!! I surely needed it. I'm sitting at the airport waiting to go to TX to see my family for an early Christmas. My flight is delayed and I had a bad bout of diarrhea on the way to the airport, so I hope and pray the Imodium I took works!! Flying sucks but it especially does when you have the poops!! Ugh! I shouldn't complain because there are worse things, but as you know, it's diarrhea that always sets off my health anxiety!! Anyway, I'm sending up so many more prayers for you as the next few days unfold. Love you so much sweet funny lady!!!
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Wouldnt it be nice if we could arrange a get together with everyone here?!
I feel like you are such close friends/family and I want to meet you in person! I wish we lived near enough to lend a hand to each other when needed. I am saddened by your tough times, and I love reading your happy updates and I am excited about the expected babies!
Dear sweet Annie, - your sense of humor remains in spite of going though so much, - may your days find you feeling better and stronger. Have you heard of "magic mouthwash' for your mouth sores? There may be more than one formula, but it is very helpful. Here is one link about it: http://www.mayoclinic.org/tests-procedures/chemoth... It is by prescription, but a mild version can be made with over the counter products, too. Perhaps it is available there for you??
Hoping that all here are staying warm and safe!
Hugs from NYC
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I agree AnotherNYCGirl! Oh how Iwish we could all meet in person!!
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I echo wholeheartedly what Another and LUV said about meeting up together. For me that would be a dream come true. Lets all pray we can manage it one day, wow awesome.
LUV so sorry you had a harrowing plane trip and then to get diarrhoea on top of that. If anyone rings in at work with diarrhoea my boss always goes, so and so has got the sqirts so don't go to the loo until the cleaner has been and NOBODY GOES!!!!
Well the six bombs of chemo never went anywhere today as I couldn't swallow them with these ulcers and thrush so I've spent the whole day waiting to see what they want to do about it. On top of that you have to take them on an empty tummy, so no food either. Once their chemo clinic closed at 4pm I almost dies with relief that I could finally eat something. Just nothing, just nothing turns out as you plan.
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Cocker,
I can just imagine how hard it is to be in your shoes right now. Sorry but as much as possible I try to avoid talking about pain or suffering, although I might sound insensitive sometimes. Did you get to talk to your medical team about the injectable form of your "bombs"? If they are tablets, I wonder if you could just grind or pound them into powder and dissolve it in water so you can drink it. Maybe just mortar and pestle can do the trick. There's no other way except maybe a tube inserted in your throat. You wouldnt want that for sure. I cannot say do whatever suits you, It sounds cruel but you really have to fight now that you've started this. God will help those who help themselves. It is one of my favorite sayings. I believe God will help you and your family.
Praying really hard for you.
Gina
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A Powerful Prayer for all Cancer Patients
Heavenly Father, we proclaim Your righteousness and praise all the day long. Your faithful love endures forever and Your mercies never cease. Great is Your faithfulness. Who can compare to You? We exalt Your Holy and Righteous Name. You are the Holy One of Israel who sent Jesus, our Lord and Savior, to redeem all mankind from the curse of the law of sin and death.
Lord, we thank You for watching over those persons who have been diagnosed with cancer. Thank You for Your healing power. Thank You, Lord, for declaring us overcomers by the blood of the Lamb and by the word of our testimony.
Gracious Father, Your thoughts towards us are of peace and not evil, to give us a future and a hope. We believe that it is Your will that we live free from all diseases.
Lord, thru your infinite mercy and power, we declare that the infirmity of cancer with its many forms and common types – bladder, breast, colon and rectal, endometrial, leukemia, lung, melanoma, pancreatic, prostate, skin, thyroid and other types—are destroyed, in Jesus' Name.
We command the primary abnormally deformed cell to die at its root and the metastasizing cells to cease from spreading throughout the body, especially to the lungs, bones, liver and brain. We command the increased production of healthy cells to destroy renegade cells. We declare that abnormal cells will die and not enter into the bloodstream or lymphatic system.
Lord, as the Body of Christ, we declare that all of those with faithwho have been diagnosed with cancer will not die; but live to tell what You have done.
Lord, I confess that by the stripes of Jesus, (name the person(s) who need healing from cancer) is healed, redeemed, restored and set free from cancer and its symptoms. I declare that supernatural healing is flowing throughout his/her body, in Jesus Name.
Amen.
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I'm sorry for my late response...I have been battling the flu or a virus. Thank you so much for your well wishes. We are over the moon! Our friend just felt her first kick yesterday. She's been feelings flutters since 12 weeks, but this was a good kick. My heart melted with the news. As we approach 17 weeks tomorrow, there are times I still can't believe it. I appreciate your support and love so very much!
Annie - you and your Old Feller are an inspiration to all marriages. He sounds like he's taking such good care of you. How funny about the water bottle...I love knowing you're both able to laugh through these most difficult moments. I'm so hoping this first chemo starts blasting that cancer right away and gives you some relief. As you said, only God knows when He will call you home, so keep fighting. I appreciate your love and support with my news so very much. Only you would be able to be as happy as you are for me while facing your own battle. You are so very special. Have you heard back about not being able to swallow the pills? I sure hope so. Please keep us posted. Sending you all my strength, love and prayers. xo
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Cocker_Spaniel, Has your MO suggested Nystatin suspension gargle for the thrush? I've had thrush each infusion and the Nystatin has been a huge help each time.
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Hello Everyone,
Just checking in to see how Annie is doing. Loved the story about the top coming off the water bottle. LOL It reminded me of one time, on the way home from the grocery story, we heard a hissing sound in the car. It was right around the time where there were a lot of things happening around town, and I was certain there was something very suspect in our car. We didn't know what was going on, pulled over and inspected the car inside and out. We discovered that a soda bottle had come just a little loose, and that was the air coming out, making the sound.
Annie, so glad that you have such a wonderful support system, your husband is amazing and sound like he is also a bit of fun! Glad the first chemo went well and that you like everyone at the center. Also, in terms of long-term management, I believe having that positive system around you (at the center as well as home) produces the very best environment for health. I also read that laughter and music strengthens the immune system.
And sweet Ally, oh my, what a lovely message to read from you! Congrats on the awesome baby news, truly a dream come true. It just brings so much joy to hear this wonderful and exciting time for you! Loved the photos also!
Love, happiness, and peace to everyone. Love you all!
Will check in again soon - back in the pocket for Annie!
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Annie you are such an amazing and brave person. Your DH sounds so caring and loving. We are all in your pocket.
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Ally, congratulations. All these babies are super exciting. We recently had the first baby in my family for 11 years, she is super cute, very relaxed and happy. My niece (the new mother) lives in Glasgow which is nearly a 2 hour drive away but I keep finding excuses to go and visit! She is 5 weeks old now and has changed so much already.
Annie I'm so glad you had a good day and it feels like you have got your great positive attitude up and running again. Do keep nagging your team about the mouth problem there must be something they can give you to help that. So great that you could have a laugh about the water bottle. I promise it wasn't me but it was so crowded in that pocket that anyone could have accidentally knocked it off. We'll have to be more careful in future.
Much love to every one of you for a peaceful happy and healing holiday. What a year we've had. So grateful for all of you fantastic women, you made it so much easier to bear. nowing that you are all out there is a fabulous support.
X
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amw...sorry it took me so long to respond, but like most people I found Taxol much easier to tolerate, and I hope you do too. I should have kept a journal, perhaps my recent head injury is to blame, or I just chose not to remember the details. The whole process is a blur to me now. xoxo
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Hello TN's. I have probably logged well over 150 hours of research since my recent diagnosis of early stage ( 9mm )TNBC. 6 years ago I was diagnosed with early stage (3 mm) E+P+HER- and had a lumpectomy and radiation. It all went very well and I missed only one full day from work for the lumpectomy. I was able to work from home the following day, had a weekend to rest and was traveling at the end of the next week. "Breast Cancer Light" I called it. My maternal grandmother and mother both had BC, but did not die from it and it never came back for as long as they lived. I will not be having BC Light this time around from what I have read, and I want to be as prepared as possible. Wondering if you beautiful people, who I feel I know so well now, would share your thoughts on some of the decisions I have yet to make.
I am eligible for a lumpectomy due to the size of the tumor. That is certainly the easiest recovery but I think I will worry forever about recurrence and spread. So a bilateral mastectomy is really more logical. I meet with a PS this Friday. I am a tall, muscularly thin, athletic looking woman (56 years old) who practices yoga daily and is very active in general. I am highly considering no reconstruction. I had rads on the right breast and my understanding is this can complicate any reconstruction. I have a pretty high pain tolerance, but I really do not want to be in pain or uncomfortable any more than is necessary. I have also thought about just delaying reconstruction until my head is clearer. Very worried about infection. I have another week to think about this before we start the ball rolling.
Pretty sure I will get the standard Red Devil + Taxol. Has anyone tried the Penguin Caps with this? It may seem crazy to be worried about hair loss, but my job is a "visible" one and if I can keep some hair going I think it would help me keep up a more positive persona.
I appreciate any comments, feedback, suggestions that any of you may be able to offer me. Sorry to be joining the club, but so glad that there are others out there to share with.0 -
LovesGreenThings, I'm sorry to hear about your TNBC diagnosis. The red devil has been daunting for me, but I entered treatment with a long-time history of severe Fibromyalgia so don't consider myself typical. I initially booked a bilateral mastectomy due to large breasts & a 100 pound weight loss that would have dictated surgery on the unaffected breast anyway. I changed to a lumpectomy because I live alone & became concerned about caring for myself and two large dogs with both sides of my body impacted. Further, I worried about tissue expander infection & thought the Fibromyalgia might amp up the iron bra pain and tightness. Ironically, I ended up with a nasty infection from having a seroma drained & it delayed my chemo by weeks.
I will say that, sadly, cancer can still emerge in mastectomy scars, the chest wall, etc., so the surgery isn't a guarantee of no locoregional recurrence. Neither does it preclude distant metastasis, the scourge of TNBC. I've also been surprised that local recurrence doesn't make much of a difference, if any, in overall survival for some TNBC patients (older, early stage). With your slender, athletic build, I would absolutely consider going flat. Best of luck with your treatment and sending the cancer cells packing.
Lyn
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I also think you could consider going flat. I wish I would have had both removed instead of one. Good luck
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Lyn and JCPriest,
Thank you so much for the fast response to my questions. Lyn, you are spot on with the confusing aspect of the cancer returning. I have seen some posts where it came back despite bx and that would be pretty disappointing. Like you, I happily live alone now with 2 dogs, so the worry of managing a major surgical recovery is adding stress. Appreciate both of you concurring with my thinking of going breast free. I keep thinking of when my mother bought me a padded bra (no breasts at all at 17) for a prom date. Since my breasts have never been a big part of my appearance, this is easier to consider. My friends who are busty are all on the "I would get the perky boobs" bandwagon. You sure learn a lot about your friends and family when something like this happens.
Thanks again for your thoughts you two!
Anne
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I would love to meet everyone in person.
That would be one awesome Christmas gift.
(((hugs)))
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Lovesgreenthings, I opted for lumpectomy, and had a re-excision 8 months later after chemo. I would absolutely go that way again. The surgery was the easiest part of my treatment plan. You can always go back and have a mastectomy later, but you can't go backwards to a lumpectomy.
I will say though, that I have large breasts and didn't want to go through reconstruction. I was slightly lopsided to begin with, and more so now, but I don't think it's noticeable to the average person. I have the option of a reduction on the non-affected side to match them up, but I'm not inclined to do that at this date.
Best of luck to you, come back with any more questions you have.
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LoveMyVizsla
I too love those dogs! They are so beautiful and super smart! Thanks for weighing in on this decision. Agreed that lumpectomy is the easiest way to go on this treatment plan and may allow me to focus more on getting through chemo safely. I am very worried about infections from hospital stays. I work in health care and understand how easy it is for this to happen even at the best of facilities. It is the least disruptive surgery and the first suggestion from my BC Specialist, but he wanted to offer up other options too. I will let all of you know the suggestions of the PS, although I am sure that will be from a "it's all wonderful" after mastectomy perspective. So much to consider, but it really helps to have someone who has been there offer their thoughts. Thanks again!
Anne
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Lovesgreenthings, just to weigh in, i had a lumpectomy on my other breast 25 years ago. The down time was so much easier. This time a lumpectomy was not in my treatment plan. though chemo was rough at times, it was much more doable than I had imagined. Stay hydrated, follow the thread for your month on BCO starting chemo. Share best tips with others. Remember it's rare for someone to get all of the side effects,but it is smart to do some prep. What worked for me: hydrate, hydrate, hydrate stay ahead of bowl issues, eat what and when you can.
I've reached one year from dx this month. Looking forward to many more years.
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Oh and no recon for me. I just did not want to have more surgery, plus I'm 57. Yes i'm lopsided but I have a good prosthesis for when I want to have 2 breasts.
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Thank You Valstim52! All good advice and tips. I definitely will re-read all the tips on chemo that are provided here, went through it once, but last week is a blur now!! So glad you are out of the woods now and happy with your decision. My BS thinks 56 is too young for no reconstruction. But I agree with you on the least amount of surgery as possible. I do think if I was 20 years younger I might feel differently. I admire the women that are doing so much to conquer this and reconstruction is part of that too.
Thanks again for sharing your information with me, this is so helpful.
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