List of all of the Side Effects I deal with that wreak my QOL
Some other thread here is taking about regrets over treatment causing loss of Quality of Life.
Heres my list of all the thing that are wrong with me since the bc industry destroyed my health.
- Radiation Fibrosis of my L arm. Tightness that never completely goes away.
- Lymphedema of my L arm/axilla and back ( intermittent but there)
- Lopsided reconstructed breast despite 15 reconstruction surgeries
- Blotchy, splotchy skin and telangectasia of my skin from rads damage
- Lung damage from rads. When it is really quiet I can hear the gurgling from my L lung only, just at the top of my lung.
- Heart Damage from rads despite Breath Hold Technique that causes palpitations, and decreased exercise tolerance. I still exercise, but can't do nearly as well as before. If I exercise after eating, even hours before, I can feel out of breath and faint. Now I only exercise in the morning on an empty stomach.
- Vision- markedly worse overall, and now I have some degree of night blindness.
- Hearing - just ask my kids, now I say what all the time. Impacts my job too.
- I have really slow GI transit. I may get diagnosed with Gastroparesis. No other causes, not diabetic. It sometimes follows chemo poison damage.
- Incontinence. I remember the first time I had an accident.. My mortification was complete. See HUMILIATION. I had to drive home in wet clothes.
- Vagina - dried up and painful unless I forever take Vaginal Estrogen
- UTI's - hadn't had one for over a DECADE before my health was ruined by the bc industry. Now feels like it happens ALL the time. See Incontinence above. Makes that worse. Sometimes I can not make it to the toilet in time now. .............DEPENDS anyone??????
- Sex- WTF? Hardly interested and get very little enjoyment out of it. See UTI. See Vagina dried up.
- Did I mention my brain damage..? They have a lovely catchy name for it. But damn, I can't remember what the word is! It's like sometimes my words are gone, gone gone. People look at me funny because I am fluently talking away and then WHAM! my box of words is a jumble that I quickly have to sort through. I am 4 years out from the chemo poison, so I would guess this word aphasia is PERMANENT. The onco told me after I was poisoned that chemo probably wouldn't do any good anyway........... Way to go, scca for good care. See vision/hearing and impacts my job.
- They didn't tell me they were frying my Thyroid. My Thyroid is IMPORTANT! It's a master gland, runs your whole body. The Hypothyroidism I had got considerably worse after rads. See Gastroparesis/see hair thinning/ see heart damage and exercise intolerance.
- My HAIR - really thinned out in the front. Who doesn't like to be a bit bald? Lets all rock that bald look. Actually I don't like to be sparse on top. ACTUALLY HATE THAT. Thank goodness for Bioidentical Progesterone. Some of the hair grew back, but nothing like what I had before.
- Did I mention I am terrified of shots now? I cry at the dentist, and have to get the gas. Sometimes my hair is wet with my tears. I wouldn't say I loved the dentist before, but Now, it's BAD.......
- Oooooo, how about the Rotator Cuff tear from the Cipro I was put on for a UTI and hemorrhagic Cystitis during chemo poison. ... See UTIs
- The mutilation bothers me every damn day. That never goes away completely. Scars don't stretch. I am uncomfortable in my own skin, my body always feels wrong now.
- I should mention I have almost no savings.I had money in retirement. Mostly gone, although I am back at work and trying to save again. See 15 reconstruction surgeries. See Rotator Cuff tear. See parking and gas for all the mostly useless trips. See bandages/gauze/antibiotics/ IVs/ high out of pocket deductibles. I am just trying to take care of my kids. They missed out alot on things other kids got. Just couldn't afford it. I was so broke sometimes that I had to hunt down change to fill my gas tank/ or get groceries. 30 dollars in change is an insane thing to dig up. I couldn't even afford Counseling, my husbands insurance wouldn't pay for it. People assume there is all this assistance available for people from the cancer industry. There is no truth to that at all. I got a 100 dollar gift card from scca, that's it. $100 dollars didn't go far at all.
- I caused my kids harm when I terrified my younger girl one day while having a screaming fit from the tamoxifen. Gave that sh*t up. Couldn't take the mood swings and depression. My youngest was only 7 when she saw me become a deranged, crazy person. I still cringe just thinking of it, wasn't my fault, but they never warned me that could happen when they prescribed tamoxifen.
- I don't feel safer, ever. Every time I have a new ache or pain I get afraid all over again. If I had known how bad this would get, really understood, I would have told them hell no! I am trying but constantly experiencing setbacks. This just sucks, ruins my QOL. No one told me all the things I should have known , paternalistic medicine in action. I didn't even know all the right questions to ask.
Wow, even I had no idea of the number of things that are SNAFUed. Glad I wrote that down.