Terminally Ill People Share The Moment They First Realized Something Wasn't Right
Some moments are almost indescribable. Seconds following the first time you meet your newborn baby. Hearing back a 'yes' on a wedding proposal. Finally getting your dream job. Hearing you've been diagnosed with a terminal illness. While not necessarily all ending in heartache, most of the stories in response to Reddit user, r/TheMouseInYourHouse's, question might cause you to take stock and think about the world around you:
People who are/were diagnosed with a terminal ilness, what made you think "something is not right with me"?
50. Beat The Game
Pain in random parts of my back and legs. Intense one day, gone the next. Fainted once, which never happened before. General tiredness. Lack of appetite. Intermittent mild vertigo. Went to the doctor 4 times in 5 weeks for various aches and pains. He thought I was trying to score pills and just sent me home.
One day I got home from work and couldn't stand up and walk from my car to the house. I had to crawl, my back was locked up my legs were rubbery. I called my mom and we went to the ER. Turns out it was Leukemia and if I didn't start treatment I would be dead in about a month.
That was a little over 6 years ago.
49. Jake's Dilemma
My best friend, so not me, but worth sharing. Well call him Jake. Jake was blind. (Progressive degeneration since birth, not related to this.) Jake was having problems with his eyes. A simple muscle twitch. His eyes would dart back and forth uncontrollably. He had been feeling pain from his eyes moving, so he went to get it checked out to see if there was anything to do.
The problem is, sometimes you find things just because. You don't know something is wrong. The eye pain was unrelated to what the doctors found.
Stage 3 eye cancer and stage 4 brain cancer, at once. They cleared the eye cancer pretty quickly, but the brain cancer turned into leukemia and testicular cancer. He had two brain surgeries, and started to lose himself. When your blind friend walks off campus at ten pm in 10 degree weather without a coat because he thinks it's June, you worry. When he meets a girl in his cancer support group who has stage four cancer, you worry. When they fall in love and she dies, you worry.
Losing Jake step by step, one piece at a time was one of the worst things in my life. He called me one day after his appointment and told me to come to his dorm room. The doctor had given him a year to live. By the following December he would be gone. By July, he would be in assisted living, and would not know any of us.
Jake switched doctors. Jake found a doctor willing to try something experimental. (I'm not clear on the details, but they seem to have cut into his head, removed as much tumor as they could, and put something around it to slow or stop it's growth.) I said goodbye to Jake in May, knowing he would be going to have the surgery. He said goodbye to me like he would never see me again. He had started giving things away long before then. I had a collection of his books which he had labeled in braille. I said goodbye to him and his seeing eye dog, and prayed that I would see them again.
Jake has been in remission from every cancer for 2 1/2 years now. Last week he and I went out to lunch. I had actually coincidentally asked him exactly when he knew something was wrong, and he said when the doctor called and said "we need you to come in. We can't talk about it over the phone, so I'll make an appointment for as soon as you're free."
48. The Off-Put
Not me but my Physical Therapist.
I had been going to this clinic for PT for a few months. They had hired this new guy who did my PT for the first time that day. He was kinda slow and having a hard time keeping track of the 2 patients he was helping. A normal PT can handle up to 3-4 patients at once. He was having a seriously hard time remembering things short term.
After the session I tell him to hang in there he'll get the hang of it. I was just trying to encourage the new guy. Turns out he had been a PT for 20 years. He looked at me funny.
Then one of the doctors there, who had been friend with this guy for a long time and had gotten him the job at the clinic, looked at him funny and asked him about the headaches he'd been complaining about. That night he ended up getting a CT Scan. The next day he had a brain tumor removed.
As far as I know he's still alive today. His Doctor friend told me the whole story of all of what happened after my "words of encouragement" at my next session. And that he was doing fine recovering.
47. Such A Quick Turnaround
I am in IT and I had a user who couldn't seem to type in his password. We changed it and he still seemed a little slow at typing and couldn't seem to get it right, even though he thought he knew what it was. It was a frustrating experience for both of us but we tried patiently for awhile. I could get into his computer, but he couldn't seem to type it in. I don't have a help desk level job, but he was a work friend.
I asked his manager to check on him because it seemed so strange. He was a developer and not the sort to be so forgetful. A doctor's visit the next day ascertained that he had glioblastoma. He lived only a few more months after that.
I still get worried when I type my password in incorrectly now and I think of Steve.
46.Carrying The Weight
Not me, but I knew a girl growing up who would get dizzy if she held her head upright. For years she always tilted her head slighty and no one noticed, and she thought it was just normal.
When she was 17 a teacher finally asked her about it and spoke with her parents.
It turned out she had a brain tumor. She had surgery, got it removed, and now can hold her head upright.
45. What To Do, What To Do
I'm a P.A. And I want to point out two symptoms you DO NOT f*ck around with. These should send you immediately to your doctor:
- Night sweats. If you wake up and the sheets are wet from your sweat, something is WRONG. There are several diseases and illnesses that cause this, and none of them are good.
- Unexplained weight loss. If you lose more than 10-15 pounds for no known reason (you aren't changing your diet, eating less, or exercising more) then something is WRONG. The major concern here is cancer, but there may also may be a GI or metabolic issue that needs to be addressed pronto.
44. Rapid Progression
My friend's mom went to the bathroom and peed a bit of blood. She went to the Doctor just to make sure there wasn't anything wrong, my friend was with her when the Doctor told her she had stage 3 cancer (don't remember what kind, just damn cancer). My friend told me her mom declined with chemo and passed away 2-3 months after her first diagnose. It took her years to grieve and get better. Just imagine you're just casually going with your mom for a regular doctor's visit and then they tell her she's got cancer and dies a couple of months after. Just horrible.
A bit of good feeling news about this, my friend somehow knew that her mom was not going to make it so they went shopping for a wedding dress, she wasn't even dating anyone or anything, just wanted her mom to look at her wearing the dress she would wear on her wedding. 4 years after and she did, my friend just got married with an amazing man and she was wearing her dress her mom chose and got to see her in.
I'll be right back. Going to call my mom.
43. ALS Not Well
My dad noticed that his speech was slurred a bit and the left side of his face was numb, so he thought he had had a minor stroke. Drove himself to the hospital where he underwent a litany of tests, nothing showed stroke. This was in June of 2016. Come October after even more blood work, scans, spinal tap, and everything else under the sun they ruled out pretty much everything and decided it was ALS. He passed in March of 2017. So thankful that it happened quickly because it was HORRIBLE. Tuesday will be one year.
42. Saved By The Bro
In 2011 my appendix ruptured. I was vomiting on and off out of nowhere for about a month before it happened, which is apparently not a common symptom. I had really bad hot and cold flashes. And I constantly felt like I needed to go #2 in the bathroom, but nothing would come out. After I was vomiting one time I called my brother to pick me up from my friends house. I just wanted to go home and sleep. But he was like no you gotta go to the hospital. My appendix ruptured an hour later. Lucky my brother was there.
41. Invisible Illness
On the flip side of these stories I have a friend who had all these awful symptoms start to flare up; weakness, diarrhea, loss of appetite, low white blood cell count, swelling in hands and feet so bad she couldn't wear shoes.
Her doctors were stumped. Went to tons of specialists over several months. Had to quit work. Hospitalized several times for dehydration. They finally told her she probably had some rare form of untreatable blood cancer and she was dying. Her husband and kids started the grieving process. Filled out a will. Even planned a bucket list trip or two.
Her gastroenterology specialist looked at her case one last time and called her back for an appointment and discovered she had celiac disease. Doing great now. Fit as a fiddle. Her body was just so gluten intolerant it was literally killing her.
40. The Second You Have Symptoms
I lost my uncle the day before my birthday, last November. He had stage 4 prostate cancer.
He had symptoms for a whole winter/spring. Had trouble peeing. Woke up in the middle of the night unable to urinate. He would have to walk around the farm just to be able to go to the bathroom, (I think walking helped decrease the inflammation on the prostate.) finally in April of 2014 he went to the dr. He had blood tests and eventually a biopsy. Stage 4 prostate cancer. It had already metastasized to his pelvis, shoulder, and spine. He had a catheter put in and had radiation. Two years later he could no longer walk. He had spinal surgery to remove the tumor on his spine that was paralyzing his legs. He never recovered.
He passed away in November after being bedridden for a year. The morning he died, he told me he hated his life. He absolutely SUFFERED. he was in so much pain.
Please, men: if you have trouble urinating, especially when you're in your 50's+ age range, please go to the doctor. If he had gone at the onset of symptoms, he would still be here today.
39. Multiple Symptoms
My Dad realized something was wrong with him when his legs stopped working all the time. He'd already had a stroke, but he recovered and could walk really well. But some days he would think to move his legs and they wouldn't move.
It took a long time for a doctor to realize that it wasn't a part of the stroke, that it was really MS. The only reason the doctor made the connection was because my dad described how my grandmother died (the same thing happened to her, stroke and then being unable to move until she was bed bound and passed away). The doctor knew MS is hereditary and thought those symptoms lined up.
38. Feeling Near Death
Had a very bad case of glandular fever a few years ago.
It started like a super bad flu, then I gradually felt more and more tired and dizzy, all body aching, didn't eat much anymore because of constant neausea, couldn't stand up for very long before losing balance. Went from ~65kg to ~48kg in the first few months.
One morning I wake up, never felt so bad. Painfully get out of bed. Put my hand on the walls / tables / chairs as I walk to manage to stay up. I try to force myself to eat a bowl of cereal, the smell disgusts me too much and I don't eat any. I go to the bathroom, see myself in the mirror and think "That's how people die"
The very bad period lasted about 6 months. The whole thing lasted 2 years. Not lethal but damn, bad memories.
37. More Happy Endings Please
I dropped 15 pounds as an 11 year old in less than 3 weeks, drank about a case of bottled water a day, and started wetting the bed.
My mother saw me walking around in shorts and thought I looked sickly and scheduled an appointment with my primary. She told the nurse on the phone my symptoms and we got in 2 days later. My primary instantly recognized it was severe hyperglycemia (high blood sugar) and I should have gone to the ER. If we had waited another week, I could have gone into organ failure. The nurse that took our appointment call and all other staff were educated to recognize these pre-diabetic symptoms in order to direct people to the ER rather than have them wait for an appointment.
Type 1 Diabetic 11 years now and not a hospital visit since!
36. Go In Yesterday
My dad thought he had the flu. Started with cold-like symptoms which progressively got worse over about two weeks. Ended up finally going to see the GP when Mum literally had to both mentally and physically drag him in.
By this time he was barely able to walk. The doctor took one look at him and immediately called an ambulance to collect him and take him to hospital. (One short block away),
Here he was in ICU for a week where they ran every test under the sun, drugged him with go knows what, had him on machines - scared the sh*t out of me seeing him like that. He was such a hard worker. Always 'down the shed' making something - he's a very intelligent man.
While in our hospital he suffered two strokes from the medication. The doctors discovered glandular fever and Ross river in his blood. They couldn't do any more so flew him from our rural hospital to the city.
Fortunately they had a doctor there who was able to recognize and diagnose Shurg Strauss Vasculitis. A one in a million disease that has attached his leg muscles and nerves and plays havoc with his white blood cells.
This was over 10 years ago now and we are so lucky to still have him. He is on a cocktail of drugs for pain (constant pins and needles in the soles of both feet along with massive shooting pain up his legs from the damaged nerves). The strokes left him with pain in his hands and a little difficulty in using them. He has to always wear special braces on his feet to walk - otherwise they would 'flop' down because of his lack of feeling, muscle and nerve damage.
To go from this amazing man who could literally do/make anything to someone who not only lost his job but lost his ability to do what he loved was devastating.
If he didn't have the stubbornness and determination he would have sat in a chair all day and shrunk into a shell of himself but he is amazing. He still gets out there and works through the pain, through the sluggishness of pain killers and god know what other drugs and slowly does what he loves, mainly for himself and little freelance stuff here and there.
So sorry for the long message. Basically guys even if it's just a 'flu' the you have had for an extended time - get yourself to the doctor. If you think something isn't right or they aren't finding anything and you just know, get a second opinion. You only get one chance at this life.
35. Luck Of The Draw
For about a year I was really sore all of the time. As a barely 30 year old I was struggling to get up stairs. Granted I am large, and I associated it with getting old and being fat. Early that year I peed blood and the doctor said it was likely a kidney stone. Got over it and moved on.
It didn't get better and eventually I felt like I had the flu for a few weeks. I was sleeping a lot and really sore all over. Again I peed blood. I went in again and they were setting up some tests. I called my mom and told her and she said wait a minute (she worked for a kidney doctor). A few minutes later she called back and told me that she talked with the doc and she broke all kinds of HIPPA rules and grabbed my report, I had advanced kidney failure. He booked me a room immediately (and I mean get the fuck to the hospital now immediate).
Long story short, I ended up having a biopsy of my kidneys (not as unpleasant as it sounds) and was diagnosed with ANCA vasculitis. Basically an autoimmune disorder where your body decides to fight itself - I always joke that is why I was never sick, my immune system was in overdrive and got bored fighting other things and attacked me.
Went on chemo for a few months to kill my immune system and waited for the outcome., After two major bouts of pneumonia (caused by the drugs and my weakened immune system) over the next year and chemo I came out. My daughter was born that same year, and I am basically living with something that will eventually kill me. The good news is that the doctor that my mom worked with wrote his thesis on this disease and is one of a few in the country that has a great deal of knowledge about it. For a one in a million disease that is usually fatal I was very, very, lucky.
34. The Thing Meant To Help Hurt Us Instead
Well my mother knew she had Chronic Lymphocytic Leukemia for about 4 years, which is not quite a terminal cancer. But when she was in radiation for CLL she also contracted Melanoma. After being in remission for both about 6 months she got shingles. Which itself isn't a too serious illness. But it turned out the shingles managed to hide a lot of symptoms of her 3 brain tumors.
Before we even got the results of the CT scan we got a call confirming her brain surgery in 2 days. Unfortunately even with rigorous radiation the tumors were just too much. She passed away about a month and a half later.
Now I go to yearly melanoma screenings and pay much more attention to weird sh*t my body does.
33. Never Just Cramps
For my mom it was cramps. The first few times she went to the doctor, they were like "well, women get cramps", and put her on a long waitlist for a colonoscopy. But these went deeper then the menstrual kind. In the meantime, she was also losing weight which she thought was weird as she was eating a lot more junk food due to her early morning flyer delivery job (i.e. eating at McDonalds). When she was diagnosed with colon cancer, she only had three months left.
32. 23 Is Old Enough
My dad had prostate cancer, thankfully it was removed urgently otherwise it would have killed him.
He had really bad trouble breathing and going to the toilet. He would get really light headed and his words were: "half of the time I felt drunk." At this point my dad didn't drink either.
He keeps asking me to go get checked, I should really but I'm only 23...
31. Luck Luck Luck Luck Luck
My dad was running on a treadmill and felt the top of his head get warm like someone was pouring warm syrup over his head then his hearing went out all of a sudden. He drove to the hospital and he had a aneurism bleeding in his brain. He miraculously survived with no side effects. A few months later the same spot ruptured again and he had another aneurism. Again, miraculously, no impacts other than weeks in the ICU and one hell of a roller coaster for our family.
Then, a few years later he noticed his average mph on his weekly bike ride dropping without any other life changes. Asked the doc... blood tests... he has bone cancer affecting his red blood cells.
Overall, the only side affects of two aneurisms and bone cancer is slower bike rides and an incredible drive to live life to the fullest.
"Grab all the gusto ya can" -My Dad
30. Schnauzer Savior
Not me but my mum. She was walking on the beach with her two beloved miniature schnauzers. Another miniature schnauzer ran up to her, head butted her leg and knocked her over. The dogs owner ran over and apologised and said the dog was blind but normally very well behaved and had never done that before. A few days later, mum had a big bruise on her lower leg where the dog had hit her, and her leg was swelling up. She also was a bit breathless. Mum was a nurse and was concerned she might have a deep vein thrombosis (blood clot in the leg) from the trauma and subsequent pulmonary embolism (when the clot travels to the lungs). She went to the emergency department. They shared her concerns and she had xrays and full work up. They found a malignant tumour of the thymus which was extending through her mediastinum and into the wall of her heart. If it wasn't for the blind schnauzer, she wouldn't have gone to hospital. There is some evidence dogs can smell cancer. I fully believe that dog did.
29. Too, Too Fast
My brother was working overseas and got really sick with what he thought was tonsillitis. He flew home to get better. My parents took him to the doctor for a check up and the same day the doctor called my mom and told her that her son has cancer. The only other symptom was some red blood dots on his skin on his side. He was diagnosed with acute myeloid leukemia. He went into hospital on Friday and passed away on the Monday. None of us could have ever expected it would happen that fast.
28. Management Post Diagnosis
I thought I was a hypochondriac until I got diagnosed with Hashimoto's. Not terminal but if you don't get meds soon enough it might be. Started as minor neurological problems, sleepiness, not being able to lose weight, bad digestive problems. I got home early from school at least twice a week due to severe stomach aches. Managing it with meds helped a lot although I don't think I'm as well as I was before.
27. It Hits You Out Of Nowhere
Not me but my step dad spent a year acting kind of listless, also was a little bit clumsy tripping on things. Then before Christmas it was the weight loss, 15 pounds in a month randomly and he eats loads. Couple weeks ago his speech becomes slurred and his right arm just won't work correctly. Just got diagnosed with ALS :( man loves his Xbox it crushes me to see him get frustrated because that right hand just won't do what he wants it too
26. We. Need. Reform. Now.
I woke up with the left side of my face cemented over. Bells Palsy triggered by a 3cm growth they found in my brain. I'm saving up for brain surgery. I had been having really bad headaches. The Bells Palsy is mostly gone (it took 6+ months) I have some permanent damage from it. Health care in the USA is terrible. I'll probably die before I get enough money for my surgery.
25. Yeah Kidneys Are Important
I was 12 had a cough on and off for a couple of years. Itd go away for a couple of weeks and come back. I also had bad bone pain. My mom was desperate, she knew something wasn't right. She took me to the Dr over and over, they diagnosed me with asthma and growing pains. I started getting horrible leg cramps, I'm talking you could feel the huge knot on my calves. I'd wake up screaming from the pain, and wake my parents as well. My poor mom was at her wits end, something was wrong with her daughter but the Drs couldn't figure out what. Finally after the cramps came into play a new pediatrician we went to did some blood test. They called me back a couple days later "she needs to get to the hospital now, I've sent the paperwork for her to be admitted". Turns out I had kidney failure, my kidney was at 12% function. I left the hospital a week later with a catheter, and a whole new life. Dr said if I wasn't diagnosed I would've probably had a seizure or heart attack.
I went months and months before diagnosis. It was dropping 20lbs in a month from my 5'9 135lbs *ss that finally kicked the docs in the pants.
The symptoms I ignored previous to that were gastrointestinal upset that came and went & weird arthritic feelings. I thought I had developed a serious lactose intolerance and was just getting old (I'm 40.). Well turns out undiagnosed chronic giardiasis makes you pretty much allergic to milk and causes reactive arthritis. Whoops.
I'm now a f*cking year out from treatment and I'm just beginning to not feel delicate. I'm violently intolerant to all milk proteins and have not regained much weight as I have some absorption issues now. I'm trying to rebuild muscle and I no longer look like I'm dying. I did have sunken eyes/loose skin.
If I'd payed attention and thrown more of a fit this would've been minor but noooo...
Anyhow, not terminal so I'm lucky really. I firsthand understand how giardia does kill people in lands with no Gatorade and saltines now. It is a f*cking miserable way to go.
23. And I'm Still Alive, Ya Jerks
My pee was a rusty color. Took it that I needed to drink more water. So I started drinking more water. Pee stayed a dark rusty color. Went to the doctor and then to an oncologist. They diagnosed me with liver cancer and gave me 3-6 months to live. That was 12 years ago.
22. When It Comes From Out Of Nowhere
My mom lived.
She was gardening (that kind of major cleanup after winter gardening) and experienced post-menopausal bleeding afterwards. Her doctor kept telling her she was fine. She knew something was off. Her doctor gave her a blood test and told her she did not have cancer. My mom got some kind of book on women's health after 50, and it suggested getting an ultra sound for post-menopausal bleeding. My mom went back to the doctor to get this, and they found a large tumor.
She went in for a biopsy, and they found stage 1 ovarian cancer that was localized to 1 ovary. She woke up with a hysterectomy, but she did not need any chemo.
It has been over 10 years, and she's in good health.
21. Finding You Can't Do What You Want
When I couldn't hold my newborn daughter for more than two minutes before I felt like my arm would give out and I would drop her.
Edit: I was diagnosed with ALS a few months later.
In light of this news, your username is much sadder. I was hoping for "extreme sports enthusiast."
It's just my gallows humor at play.
20. Things That Make You Go, "Hmmmm....?"
Never really got my period, I was almost 18 and was like hmmm... turned out I'd had ovarian cancer, 5 years in remission though :)
19. Things Take Longer
For my dad, he noticed it was taking him longer and longer to get simple things done at work that he had been doing fine for years. He finally went to the doctor and they found a brain tumor.
I'm really sorry for this terrible news. Did it happen long ago?
Thanks. It was 15 years ago. He died 18 months later. So as a lesson, don't hesitate to go to the doctor if you feel off!
18. Always Be Aware Of Your Body
Before my (now deceased) wife went to a [Dr.,] she found a hard mass above her breast.
She immediately knew something was not right because it hurt to touch it. Within a couple days it had multiplied in size and made the skin hurt as well.
17. When It Keeps Coming Back
In 3 months back in 2009 I acquired pneumonia 3 times in 4 months.
Gp did tests, Turns out I have multiple myeloma a blood cancer with no cure just chemo to keep it at bay.
16. Keep An Eye For The Trigger
My mom passed from glioblastoma a few years ago.
What triggered her was when she would randomly hold on to things for an extended period of time (seat belt was the big one) to the point where she audibly had to tell herself to "let go." Three weeks later she had brain surgery.....few weeks after that was diagnosis/prognosis.
15. "My Family Is Still In Shock"
I have the same story with my grandma. Extremely bright, welcoming woman. All of a sudden her personality changed where she was quiet most of the time and would only answer questions in short sentences. We all thought it was weird but figured she was just getting older and slowed down.
Then she started having severe bouts of forgetfulness. When we took her to the doc she was misdiagnosed with a UTI which can have similar effects on older people. Finally she went to the hospital where she was diagnosed/brain surgery/non-recovery/hospice. It all went really quickly.
That was 2 years ago and my family is still in shock.
14. Remember: Be Aware Of You Body
Glioblastoma's are just horrible. A girl I used to work with was diagnosed last October. Her main symptom was bad migraines that wouldn't go away. She had always had migraines, but they were occasional, and suddenly they were constant. Got diagnosed within a week, and she passed on Christmas. The place we worked was a very busy bar, she was a manager and so many people loved her. It was just horrible. A couple of my good friends were close with her (we were friendly but never close) and it was so hard on them...
13. A Long, Tiring Affair
My dad had uncontrollable itching out of nowhere. He went to his primary several times, we went to the urgent care and we went to the ER twice because nothing was helping and he was scratching himself raw. At this time, he also told the ER staff and his primary that sometimes when he breathes he has a pain on his upper right back area and complained of excessive fatigue. The doctors dismissed the pain as irrelevant. His primary finally referred us to a dermatologist who sent us to an allergist. The allergist took one look at his blood work and said itching is not the problem, something else is going on and he needs a chest X-ray. Said he would call the primary.
We went back 2 weeks later and still hadn't gotten X-ray because our primary couldn't get it approved (even though my dad was a smoker for more than 50 years, started at 13!). The allergist insisted we get an X-ray and said there was a lab downstairs that could do it if we pay out of pocket. So we went downstairs, paid for the X-ray. The technician immediately told us to go back to the doctor. There was a 3.5 inch tumor in his right lung. Stage 3b lung cancer. Turns out the tumor was releasing a toxin that was causing the itching. As horrible as the itching was for my dad, I thank God it happened otherwise we would not have found the tumor when we did.
12. The Scariest Bruise Ever
I woke up with a tennis-ball sized dark purple bruise on my left upper arm. No pain, no swelling. When I finally went to check, my blood work came out as catastrophic (5k thrombocytes, aka platelets - the healthy range is 150k-400k), and leukemia was suspected.
After a lot of tests, including two lovely spinal taps, it turned out I had aplastic anemia, where the bone marrow is attacked by the immune system and stops producing blood cells.
It was a relief to find I didn't have leukemia, until I was told the mortality rate for what I had was higher.
This was about six months before my 30th birthday, and today I am 52 and fully recovered for 20 years.
11. Don't Be Afraid To Go
Before my dad was diagnosed with stage III lung cancer, he kept telling me that he had a severe shortness of breath. He was originally diagnosed with emphysema, so it was kind of to be expected, but not that bad. He was a self employed mechanic, he had to plow and shovel his own lot, and he started to not physically be able to do his work in the cold. Then the fatigue hit. The strongest man I knew couldn't even be bothered to go outside. He loved food and always ate out, and then his appetite went away. Lastly, his memory started fading fast. He forgot it was my birthday and he was too tired to go out. I think that's my hardest memory of his last few months. All of that happened before his official diagnosis.
I think a mixture of depression and denial caused him to keep pushing back the doctor visit, even though he knew something was terribly wrong. He denied treatment, and he died within 2 months of diagnosis. I think he'd still be alive today if he asked for a second opinion about the emphysema, because I think it was the beginning stages of the cancer and was misdiagnosed.
10. "...Just The One Line Stands Out"
My mom had cancer when I was young, between 4 and 5. She ended up with a mastectomy, but with chemo and radiation she recovered. She was in remission for 7 years before it came back, when I was 12.
I still remember the day she realized she needed to go to the hospital. We were at a church picnic that had a raffle, and we had gotten extremely lucky with winning like 3 or 4 prizes. I was sitting at the table with her and my dad when she just looks at him and says she needs to schedule an appointment. I don't know if there was any conversation leading up to it that they had previously, just the one line stands out.
She was diagnosed on [Good Friday,] with stage 4 cancer and given six months to live. She died six months later to the day.
9. Bart Simpson Yellow
Maybe terminal, maybe not, but certainly radically life-changing (Pancreatic Cancer, stage IA):
I turned yellow. Like...Bart Simpson yellow.
There was no pain though, so while I was freaked out about it, I didn't exactly take it as seriously as I might have if I'd been in pain. It took me about 48 hours before I had talked to enough medical professionals that one of them said "You need to get this CT scan IMMEDIATELY."
8. College Isn't Always The Problem
Not terminal but I felt "off" for a couple months. I thought maybe it was college burning me out. I couldn't lose weight even though I was working out everyday, I would get light-headed just walking around or standing at work. I told my parents and they said when I came home for break I should set up an appointment with a doctor. One week later I was out with friends and my chest started burning. It felt like acid reflux or heart burn but it started to rapidly get worse over 3 hours and I ended up in the emergency room from the pain in my chest.
It turns out there was a basketball sized tumor growing on my liver.
7. Getting Lost Coming Home
My mother had a brain tumor for an estimated 6 years before it was detected because her symptoms were so mild. The biggest thing she noticed was getting lost when going to a place she knew how to get to, like going to work or coming home. A few times she would even walk out of her bedroom and have trouble remembering which way to go to get to the bathroom.
6. Scarily Quick
A family friend started having problems typing on a keyboard as his middle finger would twitch sometimes or not move properly. He went to the doctor when it started to get really annoying, thinking it might be a trapped nerve.
Turned out he had a brain tumour the size of a tennis ball. Passed away two months later. It's was a scarily quick progression from a twitch in the finger to complete paralysis.
5. Good At One Thing, Bad At Another
When my daughter was 5 she couldn't use scissors but could put puzzles together no problem. Also, she wasn't remembering her teachers names by Christmas.
After 2 years we finally got a diagnosis of Niemann-Pick disease. At the time the doctor told us she'll be bedridden in 18 months and gone before she is 12. She turned 13 a couple weeks ago and still talks, eats and breathes on her own. She even has started taking a few steps again unassisted!
4. Speak Up If Something's Wrong
Survivor of a potentially terminal cancer here (rare and very aggressive, poorly understood, low survival rate).
I would wake up in the middle of the night in severe pain. I would take painkillers, I used topical painkilling creams, ice, heat, massage, etc. Nothing had an any effect. I had to wait out the pain and it would eventually go away. It would also happen at random during the day, but nighttime was a guarantee.
Best of all, my doctor refused to do additional testing beyond an X-ray despite my pleading. Another doctor said there was nothing wrong with me (after misreading an MRI) and dismissed my claims as an addiction to painkillers despite me specifically saying I wanted more testing, not more painkillers (because they didn't work!).
Moral of the story: make noise. Lots and lots of noise. When treatment isn't working, and you know something is wrong with your body, make noise. I was eventually diagnosed when an acquaintance connected me with a doctor that investigated thoroughly. He almost gave up on me because my symptoms were not indicative of anything in particular, but he took a risk on another MRI (thanks health care system that encourages doctors to not test!) and it paid off as the tumor had grown to a large size by then and couldn't be missed.
3. "Just Go To The Doctor If You Don't Feel Good"
Not me but my girlfriend at the time had a persistent low grade fever, felt like she had a cold and soaking night sweats for almost a year.
She kept putting off the doctor because she was working hard towards her masters degree.
Anyways, her lymph nodes in her neck suddenly got huge, like golf ball size.
Goes to the doctor the doctor sends her to another doctor and boom, Non Hodgkins Lymphoma. She lived just shy of a year with it before she died.
Just go to the doctor if you don't feel good
Edit: The thing about lymph nodes is, they can swell up randomly because that's what they do when they're fighting off bacteria and viruses. She had so many secondary symptoms that we both ignored because we were 25 and who thinks like that at 25.
Don't freak out if your lymph nodes suddenly swell up, you're gonna be okay. If they stay swollen longer than a week, go get seen by your doctor.
2. "...They Could Be Gone In An Instant"
At the end of this journey this minute with my little sister. She's getting dressed for chemo that is probably not going to happen today. She had a bad turn last week. In the hospital for 6 days (that she doesn't remember). She should be starting palliative care this week and then hospice in a couple more weeks. I sit with her through chemo and her appointments.
Mom took her in because Mom noticed that she had less energy than normal, and wasn't playing with the other kids and seemed to be losing interest in social events. Doctors wrote it off as a tummy ache, and told Mom to keep an eye on her. She fell at school and got a bruise on her knee that seemed to just keep growing over 2 weeks. She complained that her whole leg and hips hurt. Mom took her in again, and a few days later we had the diagnosis.
Hold them tight folks, they could be gone in an instant.
1. Finally, You Know Your Body
not [wanting] to eat popcorn. i love popcorn
and peeing blood, but the popcorn really told me what was up
edit: since people are asking, i have weagners granulomitosis (or similar spelling, I never really learned since they changed the name)
im alright, just waiting on a transplant and all that jazz