Topic: Pre-existing mental illness now w/cancer

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Jan 23, 2018 09:12AM Faithonfire wrote:

an interesting follow up to that story...

My oncologist really is a good doctor in most aspects and very good at clinical results but totally lacking ANY empathy for the pain caused directly by treatments! The opoid crisis being declared a doctor's responsibility to avoid spooked many good doctors into promoting patient cruelty by shaming thinking reprimand from the government for treating it at ALL was worse than spiking mortality rates for the opposite reason!! It's an industry standard attitude that is harmful to condone in ANY healthcare environment!

So anyway, her husband is a great plastic surgeon and just started doing cancer reconstructions recently. I go see this clown, and he shows me his horror show of past work Frankenstein scars photos and wanted to do 2 back flap reconstructs after leaving me flat for a YEAR first!! It was because I was a smoker and radiation treatments would completely destroy my skin and implants if I didn't bow before this jerk and beg him to mutilate me too! My LIFE was more important than my vanity wanting to keep my breasts!! I was SHOCKED but not surprised he took it that far after I kept insisting my options were SO much better than the third rate salvage option he knows how to do and would NOT admit he wasn't QUALIFIED to do the procedures I just completed with a very well trained and innovative female surgeon!! She is one of the leaders in pioneering procedures like mine in the country and she is teaching others as fast as she learns this way so it is a real honor to be a part of! She saved me and can't wait to help change the way things are done!

Now guess who gets to stand before the state medical ethics review board too!! My doctor gets to tattle on the rude jerk! Nice reputation before too but I'm the WRONG woman to bully on what's worth surviving! I told him to go slam his genitals in a car door then wait a YEAR before replacing it with shabby needlepoint! He winced and I smiled as I walked away!

Some doctors are no better than used car salesman with their limited options for treatments and NO care what happens years later with scars or pain as long as they profit as much as possible! Now that it is being seen as a potential crime to DENY pain it is changing the industry standard that's been decades overdue. It's all about standing up for what you believe in and making reality better with the changes made for all involved

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Jan 28, 2018 12:55AM jo6359 wrote:

Faith- hope you are able to find a medication combo which will stabilize you mentally and physically. Pain management can be frustrating. Due to strict guidelines on presciption painkillers , most doctors are reluctant to prescribe pain pills even when there is a legitimate reason. Best of luck to you with your healing. Having cancer and mental illness makes your journey more challenging. Hopefully, one day you will have an opportunity to

resume your relationship with your children. Best of luck to you and may you find peace.

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Feb 9, 2018 07:57PM Faithonfire wrote:

I just thought I would give an update on how I am coping with it all.

Honestly I am feeling SO much better after a quick surgery yesterday to remove a little bit of necrosis on outer edges of scars from my reaction to the glue used. It’s not exactly tissue death as failure to thrive because the back side of tissue was connected and healed completely so after trimming up edges that did not seal as well I feel a lot better than I did!

I have not heard a word from my husband for over a month straight now and I don’t expect to anymore. My lawyer is calling me back on how to start enforcing my rights soon so it’s not like I WANT to get a divorce there are just no other legal options for me to force him to honor his debts for my treatments or his word to me in ANY way! Pretending I don’t exist anymore does NOT make me or my rights simply disappear in this country! I can’t wait to see him deny what he has done in court because the damage it has done to me has all been documented and verified.

I’m starting a new branch of treatment called abandonment therapy with my therapist and workbook structure so a tad remedial but hard subject to face so it will become what it was meant to be in my transformation . Painful process but worth the work if done right and real change occurs like it has for me so far!

Wish me luck and know I keep hoping for the best for you all too! I will let you know how the new therapy goes and third surgery to finish placements with final implants and grafts should be in a few months.

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Feb 19, 2018 05:36PM jaymeb wrote:

Faith

Where are you?

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Mar 3, 2018 10:02PM jaymeb wrote:

Hi Faith

I'm recuperating from my exchange surgery. Not as bad as the mascectomy, but in pain. My right breast was cut to take out some tissue, and lifted. Some of the areola was taken off. This was done for symmetry. But reconstruction is important to me. Gotta wait four more months for nipple reconstruction. 😬😬😬😬. Hope all this is worth it.

Just really checking to see how you're doing? What's going on with you? When you're up to it, let me know.

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Mar 4, 2018 07:49PM Faithonfire wrote:

hi Jaymeb!

Perking up a bit today and love my new look so I will share a funny mystery later that STILL puzzles me!

Anyway...as I stumbled on some uk based research on cosmetic surgery and reconstructions of bad work done previously by some of their top surgeons teaching new ones for free called the ugly face of beauty in Netflix and I have to warn you it’s a bit more extreme than I am used to on a graphic level but very real and I learned a lot more that helped me understand better than the 3 interviews it took to find my own doctor who is a pioneer in the field of cancer reconstructions that I agreed to help try new options out on me and follow up for years after.

but it was very useful for me in several ways about how the cosmetic surgery industry is SO different than anything I’ve ever dealt with medically that I was only a reconstruction based patient each time so choices and options I get to make are a completely new idea to me.

I had no idea what was possible let alone what to ask about those options so I’m still learning as I go but am SO happy I chose her even if we aren’t friendly all the time about things, we share the same goals and a healthy mutual understanding of our commitment to see it through with the best results possible together. I could not ask for more comfort than that from any team of doctors I work with and I’m very blessed to have received such good care so far.

I’m up 3 more lbs since last weigh in so protein boosters are working well as I stuff myself with chocolates!!

I learned enough about silicone implants that I’m more open to considering them now thinking teardrop shape will look best but they are softer and less hazard than they used to be in a lot of ways so again obtaining accurate information will wind up making my decision on safety first this weeks visit to check my healing and I’m about 95% solid by now so I got a pet fish to celebrate!

I see fish in bowl when I leave and no other pets or people in house... come back a few hours later and it’s GONE without a trace and I stripped my entire room including moving desk bowl was ON but no body to return to store!!

Seriously my mom thinks it’s hilarious and my dads ghost stole my fish nd the sad fact is I got nothing to refute that and he was always a practical joker so only me right?!

How bad of a person do you have to be to make a pet fish run away? I would not care as much if the thing just died but that one was confirmed by other witnesses so at least I’m not nuts by myself and that’s one more thing I love about getting to spend time with my mom! She is right even when it makes no sense to the rest of the world!! Ha I need to learn that trick!!

Hope it makes you smile anyway,

Feel better and I’ll let you know what they do next when I get cleared to do more like take a bath grrr

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Apr 6, 2018 10:26PM Faithonfire wrote:

hi jaymeb,

I know I’ve been holed up in my room sulking because I have been having a real rough time of it lately, on all levels really but I’ll start with the physical and get to my family later.

a month or so after my first surgery to get cancer out with double skin saving mastectomy plus nipple grafts of cleared organ structures to my c section scars and my pet rocks in my chest that my doc for reconstruction left underfilled enough to need fake sillicone implants to keep them from doing horrific tricks like flipping completely around while I sleep in a sports bra!! So that nasty fill plate feels like a granade scraping across my rib cage directly

but I have enough skin left in pocket to flip it back around myself without any further damage to scars that go straight across middle but not underneath and up around nipple called a j scar.

Also lost about 10% mass of saline volume on left side with lymph damage but no rupture or seam leaking my body just absorbed it!! The failure to heal response was in other breast mostly healthy but damn fill plate is exact size and pressure on scar problem CAUSING that one spot and nowhere else to react that way!! Still have bruise about quarter size from my power port too but cannot see surgery scar they put it in with at all, my port came out January 6!!

And yup my weight has been totally insane since I weighed in while pregnant with my son at 240 and 210 when they let us out finally he was just under 8 lbs with a 12 inch head- my first daughter beat his noggin with 13 1/2 inch head and we were only 185 together and she was 8.5 lbs and broken collar bone on her way out she was green due to traumatic birth they made me do other 2 c sections after that because one more time would have been fatal and almost was for 2 out of 3 so I didn’t drop all my weight until after the birth of my last one and only to not be able to breast feed which is most likely reason it was so advanced and aggressive ductile invasive braca 2 mutated breast cancer!

So long story short I refused mesh metal patch of ANY kind being used on me for repairs back before they admitted it was such a BAD idea it caused more death and damage than it was meant to treat! Too bad for ME it was before they discovered a new organ in the body in between intestines and abdominal walls don’t know the name of it so they screwed up that part that regulates weight gain but kept us both alive so I can’t blame them for doing the best they could with the pile of unbelievable I dropped in their laps at the time!

I give my east coast team of doctors all the credit they deserve for keeping us alive against their odds but keeping a thumb on the scales in the name of plausible deniability has finally gone out the window for good now that my medical records and history are documented for trial studies I am now a part of.

I’ve been compiling a LOT of my story in journal form for my kids one day but unfortunately we are still not communicating at ALL anymore about a week before any school break making planning a visit impossible since I cannot travel and they all CLEARLY do NOT want to see or spend any time with me yet. I know divorced parents living out of state that know more about their kids lives than the months of hell I have been put through!

It’s not that I want a divorce as much as I desire vindication and having my rights upheld without having to fight for my most basic needs to be met!

Exploiting my diagnosis and symptoms for personal gain or pure spite is a crime and once I report it what happens to him is no longer up to me! He has every chance in the WORLD to respond and this was how he’s chosen to spend that time and money as his legal wife and mother of his kids was going through stage 3c breast cancer?!!

He’s SUCH a disgrace of a man now he is about to learn the difference between lying to your dying wife and lying in family court is a crime you don’t always walk away from!

I have done all I can so it’s up to him to speak up or be hauled before someone who will explain the difference between a legal wife and a girlfriend or baby mama you owe more than his ass can come up with when it’s his freedom that becomes forfeit for mistaking the title of wife for domestic slave!!

In short all his strategic silence is something he can no longer afford and the longer it goes on the more of his background gets reviewed in a different light!! I still love him but that means I will hold him to his words in front of people who will see my rights honored and upheld because I have earned that even if he cannot face me without being forced to by law!

I will get out in time to inform family court of my situation and switch my after care teams so I can figure out how to reconnect with my kids and get social security disability until I get my back pay as promised in court. A woman cannot survive in broken promises alone and court agrees with that after seeing what he has done it’s my kids futures I worry about most now.

So I’m feeling mutilated needlessly rather than a more fair consideration to my severe ptsd symptoms making this worse than ever and angry this is taking WAY longer than it should to milk the insurance more than I am willing to keep quiet about too once I am done and safe from reprisals of any kind for being right and able to prove it if I am forced to.

I had a 95% clear rate with chemo before surgery and all nodes taken showed complete response so missing their recommended 98% clear or better to avoid radiation being the industry standard response as clinical study is being done NOW to refute that steaming pile of NOT ME without the stress of guessing if you got fried or not in a double blind trial. I’d rather them watch and follow along as usual because the risk is NOT currently worth the unproven lifetime risk reduction vs direct damage to my new reconstruction so NO radiation for me thanks and I’ll keep my healthy organs too until they HAVE to be removed I need more than an expensive and outdated harmful guess!

I’m going with teardrop silicone also simply because my body cannot swipe any of it like the saline and my nipple grafts can be padded with my own fat to reconstruct depth on my own nipples that I lost so they will be a little smaller but still all me and no tattoos but microlazer scar removal If needed after 6 month final checkup then it’s just monitoring yearly for trials with oncology.

Glad to hear from you I’ve missed all you guys but I’ve been too frustrated with my very fussy plastic surgeon and too sad to talk about it all as I am getting so sick of not being DONE with my implants HURTING this much every damn day if they never intended to fill them up UNLESS I do radiation then they must overfill for up to 20% mass loss not to mention necrosis or failure and removal.... so NO WAY!!! I’ll take the tamoxafin pills for 5 years or until something better is finally allowed to be sold for pre menaoausal women.

When treatment improvements that are healthier for patients is LESS profit making than the current slash and fry options with every spinoff service that would go bankrupt if they simply were no longer a conmen side effect like GOING BALD and regrowing hair while still taking the same drug that made it fall out LIKE I JUST DID!!

It’s a problem of motivation and image of the entire field actually so I intend to BE that giant kick in the butt that will change how cancer became big profit but little advancement for the investment made by all the cheap marketing ploys by MY count so convict theft as FRAUD and it STOPS!

Once we change the culture of patient blaming and shaming it will be all too easy to convict those who openly profit most from lack of progress in the field!! More tax audits will create more American jobs and put our jails to MUCH better use than making patients criminals for believing their doctors lies for fear of liability!

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Apr 14, 2018 01:02PM Roaming_Star wrote:

Hi - thought i would join this forum. I too had a very shitty childhood. I score 9/10 on the Adverse Childhood Experiences (ACE's) test (google this to find more info on the topic). I was finally diagnosed with major depression 10 years ago after suffering so bad with it. After reading about the link btw ACE's and depression, cancer and chronic suicide ideation (which i have had since i was a teenager) i suddenly feel like i have an answer to what has been going on inside me for so long. I understand now about the link btw ACE's and chronic inflammation. Chronic inflammation is the precursor to autoimmune disorders, heart problems, diabetes, cancer, depression, schizophrenia, alzheimers etc. I have lots of research on this if you are interested. Anyways now i am focussing on reducing stress, inflammation, and processing negative brain responses or body responses through things like journaling, art work, suppliments, exercise, talking to people about how shitty i feel inside and anything else that calms my body down. I am hoping that a calm body will begin to feel a norm? Not sure if this it possible with cancer and my history - it will probably be a life long (or short!) process.

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Apr 16, 2018 07:23PM Roaming_Star wrote:

Thanks Bluepearl:-) i am doing a mediterranean diet now. I have been hearing a lot about magnesium and will look into it:-)

Take care,

Roaming

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Apr 17, 2018 01:41PM - edited Apr 17, 2018 01:43PM by bluepearl

Apple cider is good for a lot of things! My, you ARE slim! The Mediterranean diet is a PROVEN good diet and anti inflammatory. Stuff in the veggies! With slim Jim here, she can add the starchy ones too....pasta etc. and don't forget building muscle tissue....and added protein will also enable you to gain weight, one of the reasons the ketogenic diet is a moderate protein one. I have a cookbook on mediterainean diet...something called 365 days...nice recipes! I also make my own hot cereal......1 cup of sauted nuts/seeds ground up to make one cup, 11/2 c. wheat bran, 1/2 c. oat bran. throw in 1/4 chia seeds. two tsp. cinnamon (you can even throw in some dried fruit you like), 1Tbsp of protein powder vanilla (I usually throw in a scoop the protein powder with greens) and add sweetener of choice before or after you microwave it....putting 1/2 c in a bowl and mixing with (1/2 or more) milk you prefer. Keeping fibre and thus probiotics active is a HUGE benefit to your health!!! I love this cereal and will sometimes use it as a snack. I don't have constipation, gas, GERDs or anything else. Toasting your seeds and nuts first brings out the flavour......pumpkin seeds, almonds, pecans, anything you want. I only need to buy small quantities of expensive nuts as this cereal lasts a week or two in the fridge.

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Apr 25, 2018 06:58PM Faithonfire wrote:

Hi Bella

I owe a LOT to you and your courage inspiring me enough to share mine too because together we can do so many more things than any of us could imagine now!!

and I wish there WAS a new forum or two added for the new FDA trial study out of West Michigan and university of Pennsylvania medical oncology for the drug proclib and I just agreed to do that 2 year drug trial while taking 20mg of tamoxafin 5 to 10 years after my chemotherapy finished back in January and I decided to pass on the current radiation study being done at the Betty Ford breast center because I can’t be in two states at once!!

This is being done well as we transfer care back to my home state in time to qualify for the study as I settle out the reintroduction to my teenagers and husband who have shunned me since July claiming I had abandoned them for using the same team of doctors that cured my mother of the same diagnosis 3 years before!! Not all family reacts as we hope or expect to a severe diagnosis so it’s imoortant to reach out and embrace each other to stay strong and KNOW you don’t ever have to face any part of what this is making you feel alone EVER again ok?

I care and keep you in my prayers always just like all the other fine people who come and share with us here knowing they are always safe to so anytime!

That got me through some of my worst days so far and I never did take the time to thank you properly as I was raised to.

Good luck and feel free to get in touch if you need anything for info I check in May and will let you know which direction we go first!!

Wish me luck! Best of luck to everyone in having a better day than I did toda

Faithonfire

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Nov 17, 2018 01:57PM Faithonfire wrote:

here I am a little over a year later cancer free and finally fully reconstructed with my own nipples back where they belong not on my c scar anymore never to droop again! I am more happy about that than I ever imagined I could be after loosing my organs and getting maxim defective spacers that felt like cactus rocks stitched under my skin for 7 months of pure mental and physical hell before finally having them properly replaced with non leaking soft implants and not defective spacers that deflated to the point of deformity 3 times in 7 months with rough exterior coating and flat back with rough seams visible beneath skin to prevent capsular contraction. They were recalled along with all teardrop style implants for increased lymphatic cancer cases resulting. Considering this was the kind of cancer I suffered from I dodged a bullet and got a different kind of implant even though I chosen that style before I knew about the risks not yet made public at that time.

Thats the difference between working with the best doctor in their field and a busy plastic surgeon new to cancer specific reconstruction surgery. Mine treated my entire diagnosis not just my cancer

It was a long dirty brawl to keep my independence through this process knowing I was fighting an uphill battle to have my mental diagnosis validated without being taken advantage of for it as I tried to survive breast cancer, my husband cheating on me openly claiming I abandoned HIM for going to treatment using same doctors that cured my mothers identical cancer years before. I did not get better fast enough so that justifies him replacing me and blaming me all at the same time he convinced my kids to hate and curse me as much as he does whenever I dare ask about them.

I pray for a holiday miracle to help me get through the holidays alone as my family rubs his replacement relationship in my face claiming it’s true love

Until she gets sick of course and then she will see how funny it all is when the shoe is on the other foot as any home wrecker deserves but to steal a breast cancer survivors family and turn them against any healing potential before the holidays is just beyond evil but what can you expect from south jersey scumbags who think this behavior makes them popular until the shame is applied publicly to anyone who dares take advantage of a diagnosis like breast cancer or ptsd using symptoms to justify their behavior

It’s not just wrong it’s a real crime