Anyone ever dealt with cancer, on top of Aspergers?

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GreatRelief
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25 Feb 2011, 8:28 pm

I had Hodgkin's disease 15 years ago. I had radiation and chemotherapy, and although the cancer was cured, the effects of the treatment were devastating. I new have a moderate to serious heart condition as a result of the treatment.

One of the absolute worst things about the whole experience was that I already had serious social problems (what would later be diagnosed as Aspergers), and so to have cancer thrown on me, on top of all that, was enought to push me over the edge. Fortunately my cancer was not (directly) terminal or I cannot say what kinds of things I would have done.

15 years ago, I didn't know that my social problems were Aspergers (nobody really knew what Aspergers was back then). All I knew was I had no friends, and never really had any in school, and had little to no support from my parents, who are probably both Aspies themselves. So here I was, 22 years old, bald, sick, and no support system. I would often take all-day bus rides on the metro transit system, because there was nothing else to do, and I was so tired all the time.

Has anybody out there had cancer themselves, and what was your experience in dealing with the "double whammy" of cancer and Aspergers?



lotuspuppy
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25 Feb 2011, 9:09 pm

I technically did, although the cancer part wasn't a big issue. I had a brain tumor in my cerebellum when I was 11. It was only 8mm, and the cancer did not spread. Doctors removed it, and I never heard from the cancer again. Still, I lost all coordination in my right side, and I couldn't even walk for six months. I'm much better now.



sluice
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25 Feb 2011, 9:14 pm

Not yet. It is a concern of mine that I won't have any support system in place, what with little friends and my parents getting older, if some serious health concerns arise. I suppose I will end up on the streets and get lost in the shuffle along the way. I am glad you have come through it, though it must have been painful to go it alone. It shows great personal strength for you. It doesn't seem fair that something like Aspergers gets marginalized in society the way it does.



danandlouie
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25 Feb 2011, 11:35 pm

i too learned of a. s. late in life. have had two cancer surgeries, a few years back. recently diagnosed with a brain tumor. will let nature do it's thing.

you must learn to live each day the best you can. i have no humans so i make sure my companion animals know that i love them with all my being.

good luck to you, portland........i hope things work out well for you.



GreatRelief
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01 Mar 2011, 5:59 pm

sluice wrote:
It is a concern of mine that I won't have any support system in place, what with little friends and my parents getting older, if some serious health concerns arise.


Thanks for all your replies. In my opinion, there ought to be "subsidized support systems," or something out there for us Aspies to go to, when we find ourselves in need of emotional support. I know it sounds silly, but I think it's logical. After all, there is subsided housing and food stamps available to low-income individuals, so it seems like there should be programs out there for low-friendship individuals as well.



ZooZoo
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08 Mar 2011, 6:44 am

i have never had cancer (ever thankfull) i did have a scare a bit ago with a rapid growth tumor, but luckilly, it was non-cancerous and managed to get rid of it with only a couple of tries.

i count myself very lucky that i havnt got cancer and also that though small i have a very strong network of support, i have friends that i can rely on and i know that if anything were to happen any/all of them would be willing to give what they could to help me. hopefully though they wont ever need to.

i cant imagine how it must feel to be in that position with out having anyone, i dont know about other countries but in england we have macmillan nurses. a charity that provides practical and/or emotional support and companionship to those affected by cancer. includes those suffering with the cancer, and those suffering because of it, friends/ relatives coming to terms with it etc.

there maybe simmilar charities in other countries too, if not the samaritans is always ready to offer support and you dont need to be christian for them to help you. many other religious groups offer support to those in need of it. also many religious groups are very willing to help even if you are not a part of the religion. just turn up to a church or something and youll soon find your self inundated with dogooders hoping to improve thier spiritual resume by being the best friend they can to you.

not trying to sound condescending here, a lot of the people are very genuine, patient, kind, willing to put up with a lot (meltdowns etc) if they think they can help you.

ZooZoo



GreatRelief
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14 Mar 2011, 3:15 pm

ZooZoo wrote:
i have a very strong network of support, i have friends that i can rely on


Thank you for the reply ZooZoo. Out of curiosity, are you married? I don't ask this for any other reason than I sometimes sink into the mindset that I'll never find any sort of emotional support unless I'm married. It sounds like you, however, and not married but have found excellent network of friends, who would help you when you needed. It's a testiment to the fact that you do not need a spouse in order to have excellent emotional support.

Or maybe you are married, which is why I wanted to confirm...



dooneybourkegrl
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13 Apr 2011, 9:46 am

This goes the other way. I've never had cancer myself (though its still in the back of my mind), however I went through the whole ordeal with my dad a few years ago. All 10 months of it and I really grew up in that short amount of time. I still am softspoken, but when he needed help, I stepped up and either gave it to him or got it for him, something I would never have been able to do. I even helped save his life once, before God took him home for good. I :heart: you Daddy!! !


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NYAspie
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17 Oct 2013, 8:50 pm

I've never had to deal with cancer personally (thank heavens :) ), but have done it before with my Dad (cancer free for for 7+ years! :D ) and currently with my Mom. She's going through chemo now and I'm happy that all has been good thus far as regards that. The other day, I had a day off work, so I decided out of the goodness of my heart to drive her to her chemo session. She told me later on that my demeanor helped make the session easier for her. I'd go on, but I feel tired and almost emotional, so I'll leave it there.

Hope all goes well with you.


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spinningpixie
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18 Oct 2013, 12:19 pm

i had cancer about 6 years ago. between the surgery and complications from the surgery, i was in the hospital for about 1 month. i'm married but i wanted my husband to be with our kids most of the time since it was so stressful for them. so i ended up alone in the hospital most of the time. it was an incredibly frightening and lonely experience. at the time, we thought it best not to have the kids see me much because i looked really bad. now i wonder if it might not have been easier for all of us if they had been able to see me more often. i think a social support network would have made things easier for all of us.



blueroses
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20 Oct 2013, 11:24 pm

I've never had cancer and am thankful for that, but have had some health problems over the last year or so. And, I have to say, you don't realize how hard it can be to be alone until you are sick and scared and alone. I spent my 30th birthday and about a week after it, flat on my back with complications following a spinal tap, staring at the ceiling, listening to myself think, barely able to to get up to go to the bathroom or to sit up long enough to eat. I live alone, but was unable to get anyone to say with me and would have recovered a lot sooner, I think, if I had just been able to get someone to come stay with me and I hadn't wound up trying to do too much for myself too soon, out of necessity.

I'm still not completely sure what is going on, although doctors have suggested it is some sort of autoimmune problem, maybe Sjogren's, who knows. I really should get in to see a specialist at Hopkins in Baltimore or Penn in Philly, but am horrible with freeway driving and navigating public transportation, which I don't have to do regularly where I live. So, between the logistics of travel and not wanting to go without emotional support, I've just tried to put it out of my mind. I also know someone else with AS who put off a major surgery on his cervical spine to the point it almost paralyzed him, in large part because he didn't have anyone to help him get to the hospital several hours away that was qualified to perform the procedure.

I'm in social services and work with people with chronic illnesses for a living and try to be empathetic to everyone, but it's always been the shut-ins and those without support networks that I've gone the extra mile to help. I really think being seriously ill and having to deal with it alone is one of the hardest things anyone could have to go through.



aileen
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26 Aug 2014, 5:00 pm

I just had a mastectomy and nodes removed for breast cancer. Haven't started chemo yet. For anyone who has to be in the hospital with sound issues what I found extremely helpful was having a white noise app on my phone. As long as that was on I could tolerate the hospital much better. I live in NYC so have many treatment options and am grateful for the support I have. I'm trying to stay positive so I can recover and get past this.



pinkmoon
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07 Sep 2014, 11:40 pm

I had cancer as a child. The greatest effect was not the direct effect of the cancer but rather the psychological reactions of being forced to go through all the examinations, procedures and tests, particularly due to my distrust of people and my aversion to being touched. Being reliant on all this for my life, I came to view doctors as "God-like", at the same time perceiving what they were doing to me as torture. I thought I might die from the cancer but it was the treatment that scared me most. It made me see myself as mechanistic; aware of my propensity to malfunction against my will and the need to then defer my will in order to be treated. I have been a hypochondriac ever since. I think I might also have a medical fetish :?.



leejosepho
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13 Jun 2017, 8:05 pm

This morning I was told I have Gastrointestinal Stromal Tumors (GISTs) and that they are incurable. GISTs are typically found only on the stomach or intestines and can be removed, but my own case has spread to my liver where they cannot be removed. Imatinib Mexmylate (Gleevec) is an oral medication my doctor has said can be "useful"...and I assume she means simply slowing the growths a bit if I can tolerate the drug's side effects. I have found some information saying one-in-four people with GISTs who take the Imatinib Mexmylate live for another ten years, so I am guessing one-to-three might be what I experience because of how much the condition has already spread. I have already been shown some cancer-patient support opportunities, but I still wanted to post this here where we understand each other like few other people can. None of this is highly disturbing to me and I certainly do not have any kind of death wish, but I can still say I would rather deal with knowing I have one-to-three years to go than with wondering how I might ever manage (not that I could not) another ten or twenty in my current crippled state.


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IstominFan
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30 Jun 2017, 10:03 pm

Thankfully not, but I do have a family history of melanoma. I have to be really careful when I'm out in the sun and use sunscreen because I'm very fair skinned.