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ritzbit2
05-13-2012, 01:07 PM
I just saw this and had to share it. I do feel this way sometimes.

(Disclaimer: I hope that anyone who does have cancer doesn't take offense to this, I'm sorry if you do. But I'd hope you can find some amusement in this rather. You guys are dealing with shit that is just as hard as the rest of us, and it is seriously horrible, I respect you for that.)



How many times have I heard people say "it could be worse, you could have cancer"... or anything of a similar vein.

... It drives me nuts.

One particular occassion I remember: I was speaking to a head pharmacist, someone with a degree in pharmacology, and I was inquiring about finding an effective pain killer for severe chronic neuropathic pain...

My specific question was "I'm currently having to use oral morphine, it doesn't work very well, but the injections do okay, what can you tell me about the patches?"

The response I got? I kid you not:

"But that's really for cancer patients"...







So this wont be the first time I've said this. And it probably wont be the last either.



Sometimes… I wish I had cancer.



I mean, looking at it - and I suspect much, if not all of this, is true for others too - just kinda makes why quite obvious:



Commonalities:
■I've got a shortened lifespan.
■If left untreated I die, pretty quickly too.
■I'm in immense amounts of pain on a daily basis.
■I'm exhausted with fatigue pretty much all the time.
■I have to take tons of medications, many of which make me sick.
■I feel nauseous pretty much most of the time no matter what.
■I have to attend an unpleasant treatment solution for several hours multiple times a week too (Infact, at my previous clinic we were next door to the chemo unit & shared a waiting room. Oh, and it also makes me horridly sick)



Differences:
■I don't have a possible cure, remission or recovery (Yes, if you are lucky enough to 'survive' cancer, you live the rest of your life with the possibility of a relapse or recurrence - but at least for awhile, you get your life back)
■I constantly have to explain that I am sick to people.
■I have to explain how I'm sick to people (sometimes even medical staff) and what that practically means.
■I have to answer endless questions from people (many of which are so personal they actually have no right to even ask them)
■I have to re-explain things to people who are ignorant, don't understand, don't listen, or don't care about my illness.
■I struggle to receive adequate treatment for my pain.
■I have been accused of drug seeking when trying to just get my meds.
■I have been accused of taking illegal drugs when I take only necessary pills.
■I have been accused of overmedicating myself, when I'm usually careful to the point of under-medicating.
■I have had my needs ignored because my condition is "not serious", "not bad enough/that bad", "all made up", "psychosomatic", "just play acting", "being made out worse than it is" or "isn't real". Sometimes this has actively endangered my safety, health & wellbeing.
■I have been told "You're not really sick" or "You're not disabled" - last I checked I am unable to hold a job or pursue an education.
■I have also been excluded from things I should by rights be allowed for my disability, because I'm not "really disabled" or "disabled enough" or "don't look sick/disabled"
■I have to justify practically every moment of my life to someone.
■I get told my meds make me worse...
■I get told I'm not following my treatment otherwise I would be better.
■I've been told I "shouldn't dwell on it" or "let it control me"
■I've been told I deserve to be sick.
■I've been told that if I were more moral/religious/positive/outgoing/insert-form-of-predominant-groupthink-mentality-here I would get better or wouldn't be sick.
■I've had people tell me that if I just did/tried XYZ it would solve all my problems. (Often XYZ is either something that I did try & it didn't work, or completely against my medical recommendations, someitmes it's just ridiculous)
■I've been accused of not wanting to get better or choosing to be sick.



But mostly, because no matter what I do or say, noone who isn't in a similar position will understand my situation properly or even to the same extent as people do when you say those three little words: "I have cancer"



So sometimes, I wish I had cancer instead.



***



Feel free to add your own "it could be cancer" moments, comparisons and such.

n.mac
05-13-2012, 03:18 PM
Very interesting-I never thought about it from that perspective before.

~CJ~
05-13-2012, 05:24 PM
Yes, as awful as it sounded, the last MRI I had I actually hoped they would find 'something'...then they could actually help, I could fight something 'real', I could have a chance at getting better. Chronic illness just sucks.

Mica
05-13-2012, 05:43 PM
I agree with you, I have actually wrote something like this before in one of my forums.

Hunniebun
05-13-2012, 07:16 PM
I've honestly felt like this before too, but I haven't talked about it or told anyone...

tgal
05-13-2012, 08:11 PM
After watching my mother die of cancer and a young boy here in town fight it for years I can honestly say I don't, in any way, want cancer. I can say that I wish people understood my disease better. I wish that DOCTORS understood my disease better. The word "cancer" does make people feel empathy whereas "Lupus" just makes them get a stupid look on their face. I do understand the sentiment but there is more hope in my disease then in cancer. If I was going to wish for one I would wish for...none

ritzbit2
05-13-2012, 09:59 PM
My thoughts from facebook because I'm too sleepy to type it up again lol "I have family memebers and friends who have gone through hell with cancer so I really understand how terrible it can be especially when its really bad and the usual stuff doesn't work, but if I hear one more time "it could be cancer" I will seriously explode. For 1) I don't particularly want to be sick period, with cancer or anything else. 2) I'm sick of people deciding which is worse without knowing what its like to personally have delt with either of them. 3) Sick people don't compare illnesses, so why does everyone else. I seriously doubt someone with cancer would be like hey I have it worse than you. They would be like I'm really sorry you're sick and dealing with so much I know how hard that can be. I wouldn't have a problem with it if other things got just as much notice. I'm sick of people down playing what I deal with and then saying "it could be cancer". I don't down play cancer and say well it could be...... Its because everyone knows cancer is bad. They don't seem to realize how bad other things are too though. I have someone in my family who is fighting like hell against a really bad kind of breast cancer right now but they don't say "get over it your lupus isn't bad" they donated to my walk and support me. I wish everyone could just stop thinking the way they do about illnesses."

Sometimes I would honestly pick something like cancer over this. Some cancers have a great chance of just going into remission and never coming back. I know thats obviously not always the case as I have people in my family who have died from cancer, but I also know alot of people who have been in remission for years. The person who wrote this doesnt have lupus but I think they were saying alot of chronic illnesses don't even have the chance for remission like with cancer. I feel like this, as bad as it might sound, all the time when I see pink ribbons. Not because I don't support breast cancer because I do. My aunt on my step dads side has inflammatory breast cancer that has spread to her spine and brain. But the ribbons are like "awareness" things. Everyone is aware of breast cancer and knows what it is. Just once I'd like to see a product at the store with a purple lupus ribbon lol

BonusMom
05-14-2012, 06:15 AM
I understand where you're coming from, however, there's not one minute i wish i had cancer because people are familiar with it vs SLE, Sjogren's, gastroparesis, etc, i'd explain any of my conditions, daily, if necessary, so as to avoid cancer's wrath i saw what it did to my dad, and it wasn't pretty.

I have neuropathy in my feet, causing them to burn like hell, but I can still walk so I wear the prettiest shoes I can find and make sure I get pedicures to show them off. I have positive sayings as my screen savers on my computer at work because if I don't concentrate on the positive in my life I would have checked out already. Yes, I have that much stress, but I refuse to be the hostess of a 24 hour pity party.

My most beloved cousin was just diagnosed (last week) with Stage IV liver cancer. I'll be transporting her to/from chemo because it's too advanced for surgery and she's not a transplant candidate at this point. Like Rob's Dad, they are hoping to shrink the tumor and then remove it. It'll be a miracle if she survives and lives long enough to see her newest grandchild (due in Sept) take its first step. BTW, she's only 54. She's got a positive attitude and we're going wig shopping on Saturday-cameras in tow!

Cancer, like SLE, never goes away. It's just lying in wait, waiting to rear its ugly head again. The professionals call that remission. I call it false hope.

tgal
05-14-2012, 08:49 AM
I need to put this out there and make everyone aware of what is going on. This thread is causing lots of controversy. Right now I am leaving it up because there are about as many "pro" on this thread as there are "con's" hitting my PM. Although I found it difficult to read on a personal level I am not, as a moderator, to lock down or remove threads based on my own personal feelings. I am, however, a moderator to keep this place running smoothly and this thread has the potential to cause issues in that area.

Please choose your words carefully when you post. We all understand how frustrating it is not to get answers and to hope they find something on an MRI so there is "proof" that you are not crazy. It is, however, difficult for those that have held the hands of people that were taken from them by cancer to read a thread like this. No one is trying to monitor threads for things we disagree with but the threads are monitored for things that can/are hurting others and this thread is on the boarder of causing emotional harm to several.


Just wanted notice to be given.

ruziska
05-14-2012, 09:57 AM
I understand where you are coming from. It isn't a "gee I wish I had cancer" envy. It is a case, in my opinion, of having a disease that is such a gray area. An illness that is sneaky, a "shapeshifter" if you will. It cleverly disguises itself as something else making it so hard to diagnose much less understand. A disease, that in many cases, doesn't get taken very seriously by doctors or the general public. In a way it is like our "imaginary friend": we can see it, feel it, touch it, but no one else can. Lupus doesn't have the same cache as cancer does. It doesn't have the funding to study and find a cure like cancer does, it doesn't have the celebrity support that cancer does. In that respect, cancer is lucky. It's popular. If it were a person, cancer would be the prom king or queen and lupus would be the kid in the corner. Please note these are just my opinions and I don't mean to offend anyone!

Marine wife
05-14-2012, 01:06 PM
Thanks a very good way of putting it!

Hunniebun
05-14-2012, 02:41 PM
Well when I said earlier that I was thinking about this too, I didn't mean that I'd rather have cancer. What I would rather, is that people and DOCTORS sympathize more and other people would actually learn more and not be so stupid or treat me like I am a whiner. I have heard "it could be worse" so many times, it doesn't make me feel any better. I shouldn't be like this, PERIOD. I was diagnosed when I was 22, and its screwed up a lot of hopes and dreams I had and what I was currently doing. I'm too young for this BS. There are people I know that cry rivers because they have a cold or the flu for a week...Boo hoo, they get better, and once they do, they right away go back to telling me its not so bad, its not that hard.

I seriously doubt whoever wrote this REALLY wishes they had cancer, they just wish that they'd actually get more support from people and doctors.

My grandma has breast cancer, and I've had friends who have lost their parents, aunts and uncles to cancer. Its also a very serious and sad disease. My grandma's been doing well fighting it and she's in her 80's, but I still worry about her.

Nobody can understand FULLY, what we are going through unless its another sick person.

I wish there was more awareness, more funding...More relief, and one day a cure.

This is just how I feel anyway, not trying to start up anything, just my personal stuff.

BonusMom
05-14-2012, 07:35 PM
Coincidentally, I was speaking with a co-worker this evening who I knew beat breast cancer several years ago. I was asking her about wigs and hair loss. MR had a mastectomy after two tumors were found in one breast fifteen years ago. No lymph node involvement. The chemo, she said, was an insurance policy.


MR, out of the blue, told me that she would much rather have gone through cancer than what her brother has endured with diabetes (he's suffered amputations), or myself with SLE. MR said that, in her opinion, a one time battle with cancer was nothing compared to what people with chronic illness endure.

The grass isn't always greener.

kim,l
05-14-2012, 08:21 PM
i can understand the frustation of having lupus and how you can be treated with a lot of people not even know what lupus is. but i had a recent cancer scare myself they thought i uterine cancer and the thought of leaving my family alone and dying from cancer was devastating especially after i watched my father inlaw die of cancer. and i can assure you i was pleased when they told me i didnot but what i had was just a symptom of my lupus and i can tell you i was extremely relieved at that time that it was my lupus. i agree with mari we get so frustrated sometimes with this disease but we do have to be careful about our comments because there are alot of members who are suffering with other things on this site as well as having family members who have died or have cancer or other things. and we have to be sensitive to others after all we are a support group. and even though everyones opinion and thoughts count. people emotions can run high and we are a family here and as a family we need to respect everyones feelings and just be a sensitive sometimes of what we say and how it can affect others. we are a great bunch of people here and we care about one another and i personally am very proud to know you all and have nothing but respect and luv for everyone here.

Codi98
05-14-2012, 08:53 PM
I believe that none of us want to be sick its that we want the support, exposure, and funding cancer gets! The more awareness our disease has the better off we are! Lets focus on raising awareness! Love ya all !

ritzbit2
05-14-2012, 09:23 PM
I feel like everyone took this wrong. I didn't even write it I just liked the thought. I had grandparents who died from cancer, an aunt fighting breast cancer, an uncle who died from melanoma, and an uncle who just went into remission from lymphoma. I am not unfamiliar with what cancer is like. There was the disclaimer for a reason. It wasn't posted to upset anyone just someones thoughts and I shared it because I can agree with most of it. If its upsetting everyone just take it down.

kim,l
05-14-2012, 11:33 PM
i am sorry ritz nobody thinks you did this to upset us its just a touchy subject for some but please do not think for one moment we do not share in your frustration my friend about how people treat us with this disease people just do not understand unless they are living with it themselves and most people have never heard of it. or doctors just do not have absolute tests so they jump to conclusions. we have all got similiar remarks at one time or another. and we all want to say hey live a day in my shoes and maybe you would understand how i feel, i do agree we do need to have more awareness about lupus and other autoimmune diseases, take care my friend hugs kim

rob
05-14-2012, 11:53 PM
I feel like everyone took this wrong. I didn't even write it I just liked the thought. I had grandparents who died from cancer, an aunt fighting breast cancer, an uncle who died from melanoma, and an uncle who just went into remission from lymphoma. I am not unfamiliar with what cancer is like. There was the disclaimer for a reason. It wasn't posted to upset anyone just someones thoughts and I shared it because I can agree with most of it. If its upsetting everyone just take it down.

Hi Ritz,

I didn't care for the title or premise of this thread when I first saw it. With what happened to my Dad two months ago, I will admit that the thread title struck a raw nerve with me at first glance.

However, it's obvious that this thread has started a conversation that resonates with many of our members, and has started a discussion about a thought and an idea that more than a few of us have probably had, but maybe didn't want to put into words. I think the original author meant no disrespect and was simply using Cancer as a metaphor to make a point. I don't think the author actually wanted to have cancer.

I think this is a thought provoking thread, and a topic worthy of further discussion.

Rob

steve.b
05-15-2012, 01:12 AM
ritz,

i also was scared by the title.
i read the origional comments carefully.

we are a cyber family.
we are here to help support each other.
part of supporting is letting someone express a comment we personally disagree with.

so i can honestly say...
thankyou for posting it.....
it has oppenned up a lot of discussion.
we are here to learn.
and part of it is learning how to live with others.

tgal
05-15-2012, 01:52 AM
This was a thread that could have gone either way. This topic was/is very sensitive. I agree with the two above me when they say that a good topic has been opened here. Our members have had a thoughtful discussion on the subject and have shared some real feelings that may not have been shared otherwise.

We have a great group of people here and they show it time and time again

Corella
05-15-2012, 03:34 AM
I lost my Mum to lung cancer - 6 weeks after diagnosis. Whilst I can see the comparisons between peoples attitude and how they view illnesses like Lupus or in my case Sjogrens, I personally cannot compare them.

Having held my Mums hand as she passed away, I remember praying with all my heart that a cure be found for this nasty evil disease that steals away our loved ones.

I am no undermining any AI illness, god knows I have been really sick with Sjogrens - it is attacking my lungs big time and my quality of life is hugely impaired, sometimes I cant walk as I cant breathe.

But with regards to the attitude of other people not giving our AI illnesses recognition - well that is their tough luck and not mine, I will explain when asked, they can ask me anything, I will be upfront and honest that I drink a lot, brush my teeth a lot, pee a lot, get tired, wont be able to breathe if I walk too fast or far, I will go from having a rash on my cheeks to deathly pale in an instant, I cant sit under flouro lights, I pop pills and painkillers at my desk, put drops in my eyes every 4 minutes (yes in the Summer), I see my dentist every 4 months to try and keep my teeth and I am on steroids that make my blood sugar unstable, make my face fat, me fat and prone to mood swings.

I will sum it up for them in layman easy terms, I tell them that I have a medical condition that needs managing, I am under two specialists in order to stay well, I will not pretend it is not happening to fit in with their work ethic or to fit in with friends.

And you know what? I dont give a jot if they understand, because the explanation will be basic and simple and all I ask in return is respect and understanding and if they cant or wont give it to me, then it is their lookout and not mine, I will move on.

But for me, I cannot compare any AI illness with cancer, the term we get said to us so often 'but you dont look sick' sometimes I look in rude health, my Mum however, she DID look sick, she looked as though she had cancer and that is one vision that haunts me forever.

My friend is in remission for breast cancer, she has just had an MRI and an ultrasound as she is getting head pains and groin pains, it is always in the background hiding behind the curtain to reappear.

For me, I cannot compare them - just cant do it but then I have learned to wipe those that dont understand from my life and that is quite liberating.

panda_lupo
05-16-2012, 08:30 AM
Funny! I just did the Lupus walk for the first time this year in Calgary and I came out told everyone about my Lupus....

In my message I sent around to get donations I put at the end.

" Thank you for showing your apprecaition, by clicking yes it helps us know that our efforts are getting acknowledge. Lupus may not be Cancer but it is a severe disease that thousands are faces with every day. "

And I ended it with a quote " We're all in the same game; Just different levels, Dealing with the same hell; just different devils"

I found this Quote was very inspirational as lots of people responded postive and putting the quote up on FB every where.

serand4
05-16-2012, 04:45 PM
I have to say that there have been many times I have felt just like ritzbit2. I would at least have something tangible to fight. I call my disease the black rose because it's petals continue to unfold with new agonies and challenges. On Friday I will be seeing my neurologist to discuss a spinal tap and discuss if I might have Central Nervous System Lupus rather than SLE. The week after I will be seeing a Hemotologist to find out if I may have cancer -- I may just get that terrible wish. We all know that only another person with an autoimmune disease truly understands what we are going through and that's why we have this wonderful website to share our deepest thoughts with each other. My mom often does the "well at least it's not...this or that." She doesn't mean to hurt my feelings. She just doesn't know what else to say to try and comfort me. I've lost friends because I've changed so much due to the intense pain, fatigue and constant illness. I've also become so much closer to other friends who desperately want to help me fight this ever-changing disease. I hold out hope that they will find something that takes the sting out of this and will give me back at least a bit of my old life. Cancer or Lupus? Neither one makes us a winner. Like I said, thank the good Lord for websites like this where we can share our thoughts with others who truly understand.

mountaindreamer
05-17-2012, 06:27 AM
hi ritz,

it has been so so long since i have been in touch. I hope you are doing ok. I have a huge supply of Lidoderm patches that I can cut and place on parts of my body that are especially painful. My dr. wrote the script, and they really really help.
\
Ask your dr. about these patches. I leave the patch on for 12 hours, and i truly get some relief.

rob
05-17-2012, 09:10 AM
hi ritz,

it has been so so long since i have been in touch. I hope you are doing ok. I have a huge supply of Lidoderm patches that I can cut and place on parts of my body that are especially painful. My dr. wrote the script, and they really really help.
\
Ask your dr. about these patches. I leave the patch on for 12 hours, and i truly get some relief.

Hi Phyllis!

brandichi
05-17-2012, 09:23 AM
Hi everyone. This is weird...today I am back for the first time in 2 years, and this is the first discussion I read. And the reason I was gone for so long is...cancer.

I have SLE, "Advanced" Sjogren's (according to my rheumy), Reynaud's, and Celiac. And cancer. Fortunately, it was thyroid cancer, early, and highly treatable, as far as they know. This diagnosis came, however, after at least 4 bouts with what they suspected was lymphoma. It wasn't, but it has been quite the roller coaster. If you aren't aware, anyone with Sjogren's is at VERY high risk for head and neck cancer. That's not something to ignore, trust me. And because many of us with Sjogren's have numerous dental xrays, don't EVER let them do an xray without a neck shield!!

So here are my thoughts. Yes, I wish lupus was as recognized as cancer is. Absolutely. You don't have to do a lot of explaining when you say that C word. People just know. Although that leads to tons more questions that I often didn't feel like answering. But here's my experience with lupus, and I was diagnosed in 2006, but probably had it for 9 years prior. Wit lupus, I've come to reasonably understand it and know sort of what to expect. If I have pain in my chest, I know it's probably pleurisy or costochondritis back AGAIN, and I can tell the hospital about my prior history and they'll somewhat listen to me.

With cancer, it's pure total fear. While I did "know" before my doctors did that I had cancer for the second time last year, most people don't know if cancer is there or not. I too have had loved ones die painfully from cancer. The first time I pulled into the oncology center, I sat in my car sobbing.

Both lupus and cancer are awful, awful diseases. Having experienced both, I can say that lupus affects my daily life, and affects everything I do. Cancer affects me in that I never, ever feel free; I just keep wondering which scan or which symptom will identify yet again that the cancer is back, and in more spots again, as it was last year. None of it is easy. But here's the one thing I learned: I am stronger than BOTH of them! And I would not wish for either of them, for myself or anyone else.

debbie-b
05-17-2012, 01:21 PM
Hi Cheryl,

It is so nice to see you here.
I am so sorry, that you had to go through all this cancer stuff, on top of the Lupus & Co.
I am very thankful, that you have pointed out to us, that we are at risk for neck, throat and thyriod cancer.
I was also diagnosed with severe sjogrens a few weeks ago, on top of lupus, RA and fibro.
It would be nice, if you could stick around, if at all possible.
Wishing you the best.

Debbie

magistramarla
05-17-2012, 01:53 PM
Brandichi,
I'm so glad that you have been able to come back to us. Your perspective on both of these diseases was just what was needed here.
My take on it all is that those of us who suffer from the "orphan" diseases are just very, very frustrated that the research, funding and public empathy are missing for "our" diseases. I also have SLE and SJS overlapping with other AI diseases. I also have Spasmodic Dysphonia, another mostly unheard of disease, unless the person to whom I'm speaking happens to listen to NPR and is aware of Diane Rehm. Now, I'm suspected to also be dealing with Spastic Paraplegia. The folks on the support group for that "orphan" disease often complain about the lack of understanding and the lack of funding for research.

It is very difficult to bring public attention to these very debilitating diseases that many of us are dealing with, especially in these times of "cut all unnecessary funding". We really must get involved in making the public and our lawmakers aware of our diseases, and making them realize that finding meds and cures for us is important, too. My hubby is convinced that as more and more is learned about genes and stem cells, there will be a domino effect in finding treatments and cures for many diseases. We need to push for support of that research.

My daughter, the neurobiologist, is going to work for the National Science Foundation in DC this fall to work on science policy for this country. We do have some advocates in the scientific and political communities. We need to keep them very aware of us. I know that Ritz and others here have participated in the Walk for Lupus. We need to keep on supporting such programs.
Hugs,
Marla

ritzbit2
05-17-2012, 06:40 PM
hi ritz,

it has been so so long since i have been in touch. I hope you are doing ok. I have a huge supply of Lidoderm patches that I can cut and place on parts of my body that are especially painful. My dr. wrote the script, and they really really help.
\
Ask your dr. about these patches. I leave the patch on for 12 hours, and i truly get some relief.

I'm glad you have found some relief :) I've been doing pretty well lately, I'm on a short break from school right now :) How have you been I haven't talked to you in forever!