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My latest blog post about my latest diagnosis. It sounds like the kid on the corner hawking Newspape
I have had a lot of people that have said things like I don't deserve to have to go through this again, how do you do it, why has this burden been put on you again, I'm sorry that your life has been ruined, (true story), and a number of similar statements. It got me to think about how my life isn't ruined and that there…
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Megase (MEGESTROL ACETATE)
Has anyone taken this drug as a hormone blocker and what side effects have you experienced. I’ve read the literature and it’s scary.
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Sore Elbow
I was dx with NCSC a year ago and had surgery to remove the mass followed by Rad Tx to the nasal cavaity and paranasal sinuses. There were no mets found at the time via a PetCT prior to the surgery and one done 3 months after Rad Tx. This month I developed a soreness in my rt elbow . after recieving a second Shingles shot…
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After partial lobectomy for Adenocarcinoma Stage 1A, 13 months ago experiencing discomfort
13 months ago I had upper left upper lobe removed. Now after 13 months I am experiencing discomfort around the area, waking me up at night and uncomfortable when I cough. Is this normal? Also experiencing upper back ache.
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Tomorrow is the first of my two dates I'm waiting for, we go to see my onco ENT surgeon for pre-op q
After the surgeon's appointment, we go to speech pathology to get information on what's to be expected and how I might be able to talk again. I'm in the dark on that one, so we will just see. I have a box full of questions for her, I might get tossed out of her office. Things I want to know are: How long will this surgery…
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What would your "last meal" be?
As my surgery date gets closer and closer Donna keeps telling me to give her a list of things I want to eat before that date, because we don't know how long I'll be on a feeding tube. Worst case scenario is I never eat and swallow again. (I don't for a minute expect that) I feel sort of like someone on death row waiting…
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Our blog post today is from Ms. JaneA, What To Say To The Newly Diagnosed
This topic came up many times with my recent diagnosis. People that I've known for years went stone cold and silent when I told them that I had cancer again. Why? Because most people just don't know what to say, it's an awkward moment. Ms. Jane and I thought it was a good time to put up some tips on what to say and how to…
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My doctor said they can't give anything that will stop the pain in bones.
There might not be a pill or pain killer but I know people often find other things that work. Have any of you found something that will help with bone pain?
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Baroreflex failure years after radiation
I had tongue cancer 6 years ago and went through chemo (cisplatin) and radiation (36 treatments). Now, after being cancer-free for 6 years, My blood pressure has gone off the rails. I have been hospitalized twice in the past two months and the doctors have diagnosed my condition as being "baroreflex failure", caused by the…
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Nerve Pain from portacath (removed 8 years ago!)
My 14 year old daughter has been cancer free for 8 years now. About every 3 months she has massive nerve pain where her portacath was located in her chest. It hurts and bothers her so much that she doesn't sleep much at all for the entire week. We are wondering if there is anyone else who has dealt with this. Not sure if…
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How bad do you have to get before you are considered disabled?
I am still able to work now, but if these side effects continue to compound and if something else pops up that makes me unable to work I could be in real trouble. We don't have hundreds of thousands of dollars in the bank, I work a real job for a living and if I can't work I have a problem worse than the cancer. What,…
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I had the best surprise yesterday. Some old friends got together and dropped by to see me.
A group that we all went to school with years ago and have kept in touch with ever since. All of them stopped by our house out of the blue and presented us with 2,500.00 in cash to help with expenses getting back and forth to dr., and treatments, co=pay, etc. I was overcome with emotions. I don't think I've ever felt that…
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Port or not?
Should I have a port incerted when I have my surgery. Chemo doctor said I was having only 3 sessions. So is it worth putting a port in or just using my veins.
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I am still seeing people that I've known for years that didn't know I have been diagnosed
When I tell them about it some of them just get a blank stare in their face. Some say that they don't know what to say. I can tell that they are not comfortable talking about it. This seems strange to me. I am the one with the cancer, not them so they shouldn't feel bad. What do you say to people when you can tell that…
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If you lost your taste, how long did it take to lose it?
Then, after treatments are over how long will it take to come back? I have mostly lost it now and that makes eating just a going through the motions thing. I don't even want to eat anything either. My appetite has left with the taste.
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Today's blog post has some good information and resources for financial assistance
Lack of money to pay for the never ending expenses is a side effect of cancer that we can't get away from and there's no pill we can take to fix it. Help is what we need. Here are a few resources, and a link to our existing resources page that has tons of places that offer help in different forms for cancer patients.…
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Thoughts on medical or recreational marijuana?
I was just reading the comments on alcohol consumption and that started me thinking about mj. Medical is very difficult to get in Northern New York. There's, like, one dispensary up here and it's miles and miles and no doctors are authorized to prescribe. I personally think every oncology unit should have someone in staff…
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If you successfully reach the end of treatments...
How often do you go back to your doctor for checkups to monitor if you are having a recurrence? I am not liking the idea of not seeing my doctor every month.
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Do you have to do any of the "leg work" in filing your claims, or does your facility/doctor's office
We have heard from some people that they are being given some what of a run-around in getting their claims filed and are being asked for itemized bills and other documents. How is your claims experience?
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In case you arent aware, do not let your life or health insurance lapse while you are in treatments
You will not be able to get new insurance for several years after treatment ends and then the options are few. I recently had a conversation with a fellow cancer patient who thought she could drop an expensive life policy and pick up a new one with another company. NO.....That would be sort of like waiting to buy…
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Some good words to remember on days that you doubt:
Whenever you find yourself doubting how far you can go, just remember how far you have come. Remember everything you have faced, all the battles you have won, and all the fears you have overcome. Then raise your head up high, and forge ahead. Because these difficult roads, will lead to beautiful destinations. ~ Unknown
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Ruth Ginsburg Health Update - Good News
Did you just hear or read that Supreme Court Justice Ruth Ginsburg has gotten good news after treatment for a tumor on her pancreas? No Evidence of Disease - NED. Greg, I immediately thought of you. In 1999, she had colon cancer. In 2009, she was diagnosed with early stage pancreatic cancer. After a fall in November 2018…
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Changing taste and smells. Not lost, but changed.
Things that are supposed to smell a certain way don't. Things that are supposed to taste a certain way don't. Is this a normal thing? Maybe before I lose it all the way? Anybody got this?
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Have any of you experienced crying with the feeling you cannot stop?
Expanding on Coleman's question about depression and anger; have any of you experienced bouts of just uncontrollable weeping? Not because of pain or anxiety, fear or depression but just a feeling of utter despair that takes over your whole body and mind. This has happened to me. I have to just let it runs it's course and…
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How long can you keep a catheter in before it needs replacement?
They didn't tell me when to come back
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How many of you have drifted off into what you might call depression?
There are days that I feel fine, not to beaten down by treatments and I have a good outlook on life. Followed by a few days of being mad at the world, snapping at everyone, feeling like my life is over and all I'm doing is waiting to die. *Repeat* Does anyone else have this going on? I really don't like the idea of seeing…
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Does the cold weather of Winter time give you problems while dealing with cancer?
The treatments can make our joints stiff and hard to get around and walking on slick surfaces can be dangerous. Our blog post today has some reminders about some of these things that we might not think about when we are dealing with everything else. Take a look at it here >> http://bit.ly/2MZtuNU
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It's national bean day! It almost slipped by me! I happened to see this online, I know some of us ar
Beans are a great source of protein, fiber, carbohydrates, folate, and iron. For #NationalBeanDay, try this 3-ingredient recipe from HNCA's online cookbook! Learn the Recipe >> https://bit.ly/2sQh4AU
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Nauseous reactions to Ninlaro common?
I've been taking Ninlaro for a couple years and recently find I have a reaction 3-5 hours after taking it .. get really nauseous and then ... yuck.
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I have developed shingles due to nerve damage from treatments, they say.
It's painful as anything I've been through so far. Have anyone else had this happen? How long did it last?
