MaryTD777
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Posts posted by MaryTD777
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Well said!!
I tend to make sure that when I see the doctor before the surgery or procedure I ask them how THEY are feeling/doing!! Did they sleep well? All the kids are doing well? Wife/Hubby is happy? LOL!! It sounds a bit like what you said. At the very least I get a giggle out of them and that is MY way of reminding them that I am a person, parent, spouse, pet owner or whatever else I want them to think of me as when they open me up and I suddenly look like any photo from a text book or slide show.
Always looking for a smile or a giggle!
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I am so very sorry for you about what you have to deal with from your GP!! As much as I have felt jealous of the National Health Service, I am sitting here slack jaw glad it's not the right season for houseflies!
Here you need a doctor to prescribe all manner of tests from bloodwork through PET Scans. That said, my rapport with two of the GPs in the practice I used was quite good. Over a period of a few years both men had been my GP depending which insurance I had on any given month. They knew that I only came in if I was very ill or injured. Because of rules that even they had to obey, I had to have tests done in the right order, but I needed only to ask. I requested the X-Ray due to cough and 10 pound loss (weight never varied more than 3 pounds back then - when I was very thin). The X-Ray showed a "spot" so the CT was the next day, then they asked me if I wanted them to check me into a hospital for the biopsy or just refer me to a pulmonologist. I chose the latter and was seen in 2 days. Biopsy scheduled for 5 days later but results were 3 days past the 7-10 days. The receptionist snapped at me and made me cry with her rudeness when she ASSumed I was nagging about results when I was there to pick up an Rx for pain. In her snapping she told me that if I didn't like it I should call the hospital myself. I did and was told that the results had been sent first thing that morning!! 5 hours earlier!! I asked her to fax to my GP and then let them know to expect that fax. He called me back in less than 10 minutes. Cancer, squamous cell, non-small cell. What else could he do for me. I said I guess a PET Scan is next and he agreed. He said that the office manager would get back to me and if I needed ANY thing, to PLEASE call the office immediately!
You can't even imagine a doctor being so kind that it makes you cry "oh, that's so sweet" tears when you should be crying yourself into a corner with no clue what to do or where to turn. I was more sad about moving to another state because they couldn't be my Drs. anymore than I was about leaving some friends!!!
That said, my only advise would be to shop around until you found a doctor who still knew the oath they took when becoming a doctor. First, do NO harm!! Best of luck to you!!
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Hi Kelly,
I am sure that little man has a sweet smile that gives you all of the energy and strength you need to put lung cancer where it belongs!! I was 47 when I was Dx. Since then, both of my husbands kids and my daughter each had a baby!!! Actually, all 3 grand babies were born between Nov 20 2013 and Oct 30 2014!! Each smile is more amazing than the next!!
I will keep you both in my prayers!!
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Yes, Please come back Wednesday to update us. As far as hair loss goes, I don't think you might get the same answer 3 times in a row no matter how many people you ask!! When mine started falling out in clumps after 3-4 weeks (hard to remember for sure now, which makes me smile because I wanted to type "It's hard to remember how long it took because that was A LONG TIME AGO!!" I know 4 years isn't such a long time to some people, but here... it can feel like a very long time compared to those first few days and the nightmares we gave ourselves.
Back to hair. When it started, it was falling out in what you might call Thin Clumps. They were clumps to me, but probably only 20ish hairs. It was still kind of upsetting since my hair was thin to start with. Rather than going to get a haircut I asked my hubby to use his beard trimmer to cut my hair shorter so the clumps wouldn't be so messy. Eventually most of it did fall out, but since a bit was left on the front, what I saw in the mirror wasn't too bad. The whoopin I wanted to give hubby months later was another story!! I came across a picture where the BACK of my noggin was right in the center of the shot!! How could he DARE to let me walk around like that and not tell me to cover up before I scared children at the store?? ARG! What got me tho was that at least a dozen people told me, or showed me, that when they or a loved one lost their hair it came back softer, thicker and curlier than anything they could have imagined!! Mine came back the same scrawny, mousy brown with grey yucky hair I have had forever!
I guess I should say that I am glad to be here no matter what my hair looks like!! I hope you got a laugh out of that! I have always used myself to try to get others to laugh. See Ya Wednesday or Thursday I hope!!
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AWESOME!! So happy that you can have VATS!! It is a lot for each of us to deal with, no doubt! You have gotten some of the best news so far with this as well as the IA or IB staging! Mine was IIB and was Dx March 23, 2011 chemo & rad May & June with lobectomy the "hard way" Aug 2011. NED (No Evidence of Disease) ever since Thank God!!
I jokingly say the "hard way" because I had 2 surgeries in one. The first was a Neuro/Ortho Surgeon who had to break apart 3 vertebrae in my neck to get the tumor free, then the Onc Surgeon did the lobectomy and chest wall resection. NO one ever wants that "2fer" if they have any way to avoid it! LOL
The one thing I do hope we share is hearing those beautiful words that we shorten into NED and we ALL want to hear after every procedure, surgery and scan from here on in. Please keep us updated and stick around after you are all Happily NED ever after! You have to share your story to the next new person that pops in on us
XoxoX
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Hi Mike,
I just saw this and said a prayer. I notice that you posted this a few weeks ago (on my birthday). Have you heard back from the doctor yet? How's everything going?
Best wishes,
Mary
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That was AWESOME!! She is very inspirati
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Hi again Ralph,
Unfortunately, most of the questions that you still need answered are the ones that just can't be answered because things are different for each individual. If there were a way to give you an absolute, trust me, I would!!
My personal experience is that I had nerve damage that started before I was even diagnosed and even though the cancer has been out of me for nearly 4.5 years, I still have pain. I had additional nerve damage caused by the surgery that gives me other troubles. I don't recall much about pain from the drainage tubes other than the discomfort of having them removed. I will say that while I probably thought it was more than annoying when it happened, now that it has been a few years I can't remember it much at all!!
There is not much point in discussing my post op pain in much detail since my surgery was very invasive and included removing parts of a few vertebrae and some ribs. It sounds like you may be able to have VATS which means you will likely have 3, 4 or 5 small incisions of just a couple of inches each. I hope that you can have that done and that it will mean that your recovery will be much faster and with as little pain and/or nerve damage possible!
A pal of mine had a tumor very much like mine and his treatment was very much like mine as well. He even had 2 of the 3 doctors that I had. He went through it all 9 years before me. YES, I did say NINE years before me!! He has COPD which evolved shortly after the surgery, but he doesn't let that slow him down much. He is still out there going on vacation to far off places a few times per year. He rides his Harley all the time except for really crumby weather. He swears that he just about jogged out of the hospital after surgery
Talk about two people at opposite ends of the spectrum!! Please just let yourself believe that you will breeze through the surgery and recovery like a hot knife thru butter and leave all of the worry to the billing clerk
While I am not saying that being cheerful will be a sure way to a pain free recovery, I do think that if you go in full of gloom and doom, you will be setting yourself up for more of the same after the surgery.I get it that you have never had major surgery, but have you ever had a cut that needed stiches? By the time they are coming out, you are mostly healed up. You barely even notice them coming out. I have even heard of people who take their own stitches out!! (Please don't do this!) So it sounds like the easiest part of the surgery process.
Fingers Crossed,
Mary
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Hi Rhonda,
I used to joke during those first few weeks of insanity, that if I could survive the crazy pace of doctors and tests, I could survive ANY thing this cancer could dish out!!
My cancer was in my upper right lobe. I had chemo and radiation to shrink it and then surgery to remove the entire lobe.
I had an X-ray, CT scan, biopsy and PET scan all done locally and most were done a day or two after the previous one. When I took all of that info with me to the cancer center was when it got crazy! I thought I was just seeing the one specialist. I went from him to the lab for bloodwork, then the PFT, a new CT, a quick visit with the medical oncologist and then to registration to schedule an appointment with the radiologist and for a bronchoscopy in two days!
I am not sure that I could have even found my way to the third appointment if my husband had not taken the day off to come with me!! I had brought a notebook so that I could write things down about not only what I was being told, but also to take notes so I could compose questions about anything that I didn't fully understand. By the time I was done I had questions about what I had written because my notes sounded like gibberish!! LOL!
I am praying that there are NO nodes involved and they can kill that ugly little bugger easily.
Be well,
Mary
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Cindy,
Thank you for posting this for me!! I am still having troubles, but I hope not as bad.
Ralph,
Sorry it took me so long to get this posted. I hope everything goes well for you!!
Be well,
Mary
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CONGRATS!!!
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Everyone reacts differently and even the way treatments are given vary.
I had cisplatin and etopiside. The cisplatin was Monday & Friday while the etopiside was daily, as was the radiation that I had after each treatment. The daily one only took about 70 minutes to run but on Monday and Friday the second bag took more like 5 hours. LONG DAYS!
I was told that I was on "some strong stuff" and yet the only side effects I had was being extremely tired, some minor smelling and tasting changes and heartburn from the radiation hitting my esophagus to get to the tumor. I could no long fill my gas tank, hubby had to take my truck for me. If I so much as pulled into the gas station to let someone run into the store I would feel so sick to my stomach that I was sure I would be violently ill, but that was the extent of my nausea. I also lost 90% of my hair, not that I ever shaved it... I just had it cut short by hubs. He used his beard trimmer LOL
Wishing you all the best!
Be well,
Mary
- wilsonma99 and BlueWolf6457
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Hi Randy,
My Pancoast tumor was squamous cell. I am a good listener and have been thru chemo, rad and surgery ( a few actually) so I should be able to empathize with her. I can be reached here or on Facebook and can give you an email address too.
Take care,
Mary
(WOW do I ever need to get an updated pic! That one was just before my dx. 3 1/2 years has done a number on me LOL!)
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Congrats on such great news!! Glad to know of another Pancoast tumor biting the dust!! By all means, make sure that he sees his pain management docs and hauls that ugly shooting pain in to a manageable twinge. He is entitled to it! The treatment also left my tumor an empty shell of a dead mass. Thank God for good treatment!!
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I just wanted to wish you luck in finding answers and making your decisions. I look forward to following her progress for a long time to come.
Be well,
Mary
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Congrats on the improvements!! And good that you have your doc working on the side effects and issues. Too many people suffer in silence when it does no good.
As far as the abbreviations go, I just went on a quick search but failed
I could have sworn that there was a post somewhere on here that had a dictionary of jargon, but I can't find it. I didn't look too very hard either, so it may be out there somewhere. Hopefully someone else will see this and point us in the right direction. Until then, please ask! Those are the easiest questions for those of us who use them to answer! In looking at this thread I see only two signatures, and the big one was mine 0_o
NSCLC = non small cell lung cancer
SCLC = small cell lung cancer
NED = no evidence of disease
CT & PET MRI are all diagnostic scans
DH = dear husband
There is a start and Please just ask!
XoxoX
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Very impressed and sort of amazed!! Congrats on a (few) job (s) well done!! And I agree with Randy that a like button (and / or Love button) would be VERY nice!
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Yes, please do "Rant on" as Randy said! We all rant now & then. Sometimes more now than then but it's ALL good! That is a part of why we're here!
I didn't think any west coasters EVER walked MORE than a couple of blocks!! You sound like a New Yorker!!
I had lot's of neck and back problems both before and due to my lc so I can't remember the last time I could walk a couple of blocks. I hope you get past this slow down quickly! Please do feel free to post on here as often as you feel like it. We may not all get on daily, or weekly etc., but all of the regulars that I have seen on here do genuinely care and want to know how you are! Please let us know what you are up to and how things are going!
XoxoX
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Adding my hopes & prayers for a good Dx or prognosis.
XoxoX
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I am SO VERY sorry that you, your sister and family are facing this!! I was also Dx with a Pancoast tumor. They are high up in the apex / apical / tippy top of the lung and the various things / nerves they encroach upon cause Pancoast syndrome / Horner's syndrome which explains the shoulder and arm pain along with some perspiration issues and minor eye issues that include a droopy lid and tiny pupil. All are easy enough to Google and not the worst thing when it comes to side or after effects.
I am glad she came through the biopsy well and I hope that the post-op (biopsy) pain won't be long lasting. (If my experience is any clue it won't be) Odds are she will also need a PET scan and maybe a mediastinoscopy ( a surgery where they go thru the bottom of the front of the throat to scope the mediastinum [area between the lungs & around the heart] to see if there is any evidence of cancer hiding in there) before they are done staging and can let you all know how far along the illness is.
Once they know where she is, they can assemble a team and tell her what is next.
In my case I had 2 chemotherapies and radiation at the same time in an effort to shrink the tumor in prep of surgery. I lucked out and it worked. I endured an 18 hour surgery to dig the tumor out of my spine and then take the right upper lobe of the lung and some ribs. Right now I am 3.5 years since Dx and 3 years 1.5 months post op - a/k/a cancer FREE!
Please take care of you & yours and let us know what is going on. I will pray that she has some awesome results and an amazing recovery! Please also let her know that she can find support here. There is also a way for both patients and care givers to find 1 on 1 support through this site! Many members are available to offer it via email and/or phone. You are lucky to have found this site early in the process.
Be well,
Mary
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I will be praying that it is just scar tissue! I had docs telling me "maybe scar tissue but gotta watch" a few times too. When the PET didn't light up, a yelled YAY SCARS!! LOL My next appointment had to be delayed cuz I am going thru some insurance issues so I will be able to wait til September before I get all scan crazy again. Hope you get some Yay Scars info soon too!!
Hugs,
Mary
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I am not a doctor (nor do I play one on TV hehehee) but I have worked for eye doctors over the years. In general what I observed there seemed to me to be the way I felt treated at many of my appointments. Until you check in at the desk for your appointment ~ odds are that the doc won't even know you are coming. I have seen docs look over the schedule for tomorrow while I was the receptionist or doing billing, but it was usually more to see how over booked than who was coming.
Some patients will stand out in a docs memory. I actually tried to make myself more memorable during treatment by looking like a crazy purple lady, including crazy purple hats. Now that I only go for follow-up every three plus months, I don't think it helps as much. I do KNOW it helped some with docs and a LOT with techs & nurses. I would get waves and smiles from down the hall at the huge cancer center cuz you could spot me a mile away! Of course your medical info can make you memorable too. I prefer to be known for my purple wardrobe than a complicated tumor!
One other thing that I learned was that facilities often have entire teams sit down and go over EVERY case on the books weekly. This means that even if your doc didn't memorize your chart a week before your appointment, you have dozens of brains listening to what you have going on & how it's being handled! That comforts me tons
Be well,
Mary
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Oh Donna! I am so sad for you! I wish there were something I could do beyond sending hugs & prayers all these miles away!
You continue to inspire me!
HUGGGGGGGGGGGGGGGGGGGGGS,
Mary
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Janet,
Sending HUGE hugs & tons of prayers! Glad that you , AND your Docs have such amazing spirit and "Tude"!!
xoxox
I guess I should say that I am glad to be here no matter what my hair looks like!! 
Newly Diagnosed Adenocarcinoma
in INTRODUCE YOURSELF!
Posted
Rhonda,
I will keep you in my prayers extra often on Tuesday!! Just remember you want that ugly stuff gone ASAP!!
Vicki,
Hi! I am sure it was a HUGE shocker! Most people think of lung cancer as being for old guys with smelly stogies between their lips. Not that anyone deserves any kind of cancer, but 33, 40 or even 47 year old ladies are not the typical image that comes to mind. I have been STUNNED by how many young women are diagnosed out of the clear blue!! Girls/ladies in their 20s and 30s who jog, mountain climb, run marathons and all kinds of 100% healthy lifestyles. Not only do people like you and me not expect them to be diagnosed with lung cancer, their doctors don't expect it either. I have spoken to people who have been where you are. Many go through so many other diagnosis' like allergies and asthma and pulled muscles. It has happened to older people who quit smoking decades before too. My hubby saw it happen to his mom.
That is why people like me shout lung cancer facts every chance we get!! We need people to know MORE about lung cancer than they do about breast cancer, since they don't know much about that beyond pink ribbons and mammograms.
I am sorry, I tend to babble.
Welcome to the group!! Please pop in often and let us know how you are doing! Share stories, ask questions or say most anything you have to say.
Both of you, be well!