My Ovacome

Back to Black

The business of cancer has overwhelmed the physical and emotional realities of the deadly diseases themselves. My life is spent worrying about money and how I’ll continue to stay afloat, but there is so much more on my plate at this point that, for the first time, I’m losing track of all of it. Last time I was here I had just encountered the psycho who told me cancer was my punishment from God – my karma for being such a terrible person (because I wouldn’t rent to him) and that I deserved to die. The next day I found out my Medical Assistance Plan expired. As many times as I’d pulled out that card and looked at the expiration date, chemo brain had me thinking 10-06-17 was November not October. So financial responsibility for pre-surgical testing, a huge surgery with 2 oncology teams, the use of special equipment, and the hospital stay, all fell to me. The day after that I had my surgery which they started robotically but switched to open because the C02 used to expand my stomach stopped my breathing. So I waited 3 weeks longer for robotic surgery I couldn’t have and ended up with the same ugly incision I would have had in the first place AND stretch marks! Four days after surgery I was discharged – an event that turned into a nightmare where I was bullied and threatened by the very people I had entrusted with my life! After deplorable treatment, I was left in a hospital gown in a wheelchair for hours without food, water, or pain meds, then refused treatment. I was in such bad shape I ended up back in the ER undergoing all kinds of treatment and testing including another contrasting CT to make sure my surgeries were still intact after everything I’d been put through. I’ve been so devastated by the events of that day I can’t even gather the courage to speak to a lawyer. I have been in bed, unable to leave my room let alone my apartment. The experience has left me traumatized with zero will to continue on. There is no reason to keep fighting to preserve a life like this. The medical community I am tied to made sure I knew how little my life matters, by treating me inhumanely, without a shred of dignity, and violating me beyond comprehension – all without reason. I can’t get my head around it any more than when I was originally told my cancer was inoperable and incurable. It’s been 4 months of hell after hell and I can’t do it anymore. I don’t WANT to. I feel like the butt of God’s very cruel joke, but even though I am completely defeated he refuses to stop pummeling me!

I have read every entry and all responses. So much info, different outcomes, perspectives and experiences, so much bravery, honesty and good advice, so much despair, confusion, joy, anger, and everything one can imagine stretching from one end of the spectrum to the other. Truly, I am each and every one of you, and yet somehow I know I am none of you. Last night I read “Carpe Diem Ladies!” from Emsymits in My Ovacome and was so completely dumbfounded by it I wasn’t sure I was even in the right place. I couldn’t relate to a single part of it. A bucket list? Travel? Choices? Happiness? Am I missing something here?! Something besides money?

Me: 2 cancers - Ovarian 3c and Colon 3c, 3 rounds of chemo for OC (taxol carbo platin or whatever the hell it’s called), surgery to remove ovaries, cervix, uterus, fallopian tubes, omentum, and resection of sigmoidal colon. Surgery revealed no visible signs of OC, no lymph nodes taken because they did path on everything they removed – all negative EXCEPT omentum (Peritoneal carcinoma). Colon tumor had grown through wall but did not “appear” to be stuck to anything else or metastasized, 18 lymph nodes taken, all returned negative. F/U with both onc teams means more chemo, possibly radiation. Three more rounds of the same for the OC and don’t know what for CC (next Wednesday). Chemo came with the usual ravages and left me with terrible neuropathy in hands and feet – so bad I am terrified of what 3 more rounds will do. More than fear of the effects of the chemo is the risk of landing back in the ER and/or hospital, something I could never endure again. I am deeply depressed and hopeless and have thought a lot about suicide. Six years of school ended with two separate and unrelated cancer diagnoses. I had done all the paperwork and paid all the fees to sit for licensure for my hard won MSW but was never able to take the exam and now I don’t think I have the brain to pass it – something that will likely only get worse if I continue treatment. If I try to take it later I’ll have to start all over again, only this time without the motivation OR the money! I’m facing homelessness if I don’t find a roommate soon, or try to move into low-cost “housing” which means I give up anything that makes me feel even a little safe, including my beloved cat "Quincy." All my student loans are due this week, and I'm forced to act as my own social worker/advocate because there simply is no one else. Frustratingly, no matter what I do I can’t seem to get anywhere with anything and I have lost the will to keep trying. I am tapped out on every level. I am slipping through the cracks and I can’t halt the slide. Welcome to the plight of the poor and sick in the United States of America where maniacal, misogynistic, assholes like Donald Trump end up in charge and the uninsured die in droves while he plays golf. There is no such thing as good healthcare unless you are wealthy. Worse still, I live in Texas in the top 4 of worst states to live in if you’re sick. Lastly, I am completely alone in this. There is no one to cover me in any way, no one to catch me as I fall. The few that were around in the beginning have gone on with their lives, secure in my ability to withstand a never-ending multitude of crises because I’m “so strong” and have such a “great attitude.” Ha! I told both onc teams I want to stop treatment; every bit as effective as suicide and I don’t have to DO anything. So here I am, writing to all of you. It’s kind of a last ditch effort to find a shred of meaning in a life that has devolved into an unrelenting shitstorm of insurmountable hardship for someone whose only purpose in life is to take up space.

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Hi lovely,

What to say other than OMG what horrid treatment you have received it’s absolutely appalling I know you don’t have the ‘will’ at the moment but please seek legal advice ASAP, everyone deserves to be treated like royalty in a hospital and considering you are paying for your treatment you deserve the best I would understand if in America they had an NHS like we do in the UK. My special person often says we’re lucky and we take it for granted at times, I can quite agree with her on that. I can only hope it gets easier for you but I promise there is light at the end of the tunnel as far away as it seems, just a thought could you not start a just giving page to help pay for the treatment I’m sure people will give to your cause and maybe sell your story to a national or international media source? I’m sure they’d grab at the chance of your situation to slate the healthcare system over there xxx

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What an utterly, utterly deplorable way to be treated. What happened to the medical oath of ‘first do no harm’ (or whatever the exact words may be)?! I know the medical system in America is more cut throat than in the UK, but that is simply inhumane and unjustified.

Could you set up a ‘gofundme’ page to help raise some money towards your medical bills? They seem to be quite the thing at the moment, and some people have phenomenal success. [Side note, hadn’t read Callmemum’s post properly, and she’s suggested similar!]. Are there any cancer charities you could turn to?

Vicki x

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Hi CynD, I had a lump in my throat & tears in my eyes reading this. All I can say is how sorry I am you find your self in such a difficult situation. When my sister lived in Dallas she had never been so poor. She, like you had strong veiws on health care after being bought up mainly in the UK where we have the NHS. I can say it's not as good has it use to be. Saying that it sounds dreadful the so called health care in the USA that treats their patients so badly.

I am very up set to hear your thoughts about stopping your treatment plan. I hope you don't go through with it. The fact you are clearly a strong minded woman means you should consider fighting these 2 cancers. You sound so a lone so lost, do you not have anyone other than your lovely cat Quincy to support you? We can give you some support on this site but I really don't know how you are going to get out of the dark hole you are in. You seem damned if you do & damned if you don't. Your hands seem tide every thing sounds doom & gloom. I am sure there wil be others on here that can lift you & give you hope. I am sadly not one of them I am too down to earth too practical.

I will look forward to what others have to say & hope they can advice you to what you can next. I am thinking of you take care please keep us up dated. Cindyxx

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My suggestion would be to put to one side for the moment your appalling treatment. It will take time and energy to pursue any redress you may have. Time and energy you need to use right now to getting yourself well again.

You need to be upfront with your oncologist regarding the pain in your hands and feet. At the very least it sounds as if you need a dose reduction in the Taxol which is what Is probably causing the pain. The severity of neuropathy should not be underestimated. I had a dose reduction of 20%.

Why not try contacting one or two of your friends who think you are strong and ask for some specific help. I think something specific, such as help to cook a meal for the freezer, or to come out with you for a walk is more likely to work than saying you need some help which is too vague.

As well as friends it sounds as if you might need some counselling to help you overcome the feeling of hopelessness you are experiencing. I don’t know much at all about the US medical system but there are a number of US patients on this site who may be able to offer advice.

You will be able to get over this feeling of despair but you may need help to do so. You too can seize the day!

Good luck and take care!

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oh my goodness what a distressing situation you are in.

I’m so glad in a way that you have posted your true feelings as I’m sure there will be so much advice from all the knowledgable ladies here.

I hope by writing all your feelings so openly that it has helped in some way to get it all out and to try and work through each part of how you feel.

Have you asked the admin on Ovacome for some advice?

Are you completely alone ? Is there anyone at all you can turn to talk about how you feel ?

I think at each stage of this disease I’m sure everyone has feelings of helplessness and hopelessness. But as callmemum has said there is always a little light at the end of the tunnel. There really is.

Are there any cancer nurses you can call for help ?

We have Macmillan here is there anything similar near you?

Could you email Macmillan or similar here and ask to see if they know of anyone near you that you could contact?

Please keep in contact with people here. Keep talking. Or writing.

Sending a big hug. X

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This is such a sad and sorry situation you find are in.

You have worked so hard, yet through no fault of your own find yourself in a downward spiral of ill health, poor medical care, frustrated ambitions with consequent huge financial worries.

You are obviously highly intelligent. The way you write the post is easy, eloquent and incredible to read. But you are also deeply angry. You have tried so hard to sort yourself but now you are slipping into a dark side.. not surprisingly!

The ladies on this site will feel your pain and heartache. I am from the UK and most of receive free NHS treatment of top quality - so grateful for that...

Like the other posts here you MUST seek help through whatever channels you can... please don't give up. I think a blog alongside a gofundme type page would raise necessary funds and would be an excellent start as I think this is your main worry, and yes contacting Ovacome for advice the next.

Please keep us informed of how things go for you, we are all behind you to give you support, virtual hugs and many 🌈💞🌈💞🌈💞

Janet x

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There must be hospitals in the US who treat the uninsured.

They surely do not let you die because you are poor?

I know that in some countries you are means tested. Does that not happen?

Hope you find a solution soon.

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Massive gentle hugs to you

X

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Sending loving thoughts and hope that you have that tiny bit of energy left to kick start some sort of support or help.Please let us know how you get on , the ladies here have so much help to give. You've reached out now ,please don't give up.

Linda xx

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I am so sorry to read your very sad story. Thank goodness you have your beloved cat Quincy to give you some comfort. I'm really sorry, I'm afraid I can think of nothing more to add to the advice the other ladies have given. All I can do is send you love and a big virtual hug ((((((HUG)))))),

Solange😊💐 🌸🌼🌷🌻🌺xx

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Hi

This is appalling - to be treated like that in the country that was perceived to be the land of democracy (that was before the current administration I think) is so wrong. My heart goes out to you. There is some very good advice given already - please, if you can muster the will, take some of the advice. Surely there is somewhere to turn to in the medical system in the US? Don't give up - it sounds as if you're quite young?

Thinking of you and sending you love and light............

Juliet

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I really do hear you. You are having a tough time and am sorry to hear this. We have all been in that place and are here to help each other. It sounds like you need some live and external help to propel you through this time. It IS possible, even though it feels hopeless just now.

I have found you a list of American Ovarian Cancer charities that can offer you support.

There 121 in total, so some of these can definitely help you!!

charitynavigator.org/index....

It sounds to me like a good counsellor or therapist might help. Can you find one nearby or ring a helpline? You could call the Ovacome team via Skype perhaps?

You also need practical help. Ring those friends that you think feel you are independent. You might be surprised- they might be simply waiting for you to call and they might WANT to help. I asked for help recently ( I am a bit too independent or try to be) and actually I was surprised at friends who wanted to do things to help me. You must have a neighbour. Can you knock on their door and ask to have a coffee and tell them you would love some company.

I would say that your most important step is to break the cycle you are in. Try something you have not tried before and people might surprise you.

Can you do a search for anyone in your area with similar issues? I did that and met a nice lady within an hour from me on this site.

You can do it. Give those charities above a ring...I have had a look at their websites for you and there are some good ones there.

Lots of hugs, Nicky xxx

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am so sympathetic to you......difficult to know what to say.....think I've said to you before my children are American and I do understand how bad the system can be. Trying to think out side the box I wonder if some alternative diet options may help. Have heard good things about the budwig diet....not expemsiove and you would at leat. be attempting a healthy lifestyle...look it up on the web. My oncologist in Lomdon says some people would prefer not to die on chemo. Sounds a bit depressing but there are some examples of radical remission out there. Do keep us informed love Chris Xx

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Dear CynD

I am so very sorry to hear about the distressing time you are having. You have had a lot of replies from our members and I hope this has helped. There is kindness and support here for you. I would urge you to click the link that Nicky100 provided so that you can access direct support from US ovarian charities.

You may be aware of a national charity in the US called National Suicide Prevention Lifeline. they have a toll-free number for anyone in crisis 1-800-273-8255. This is open 24/7 and is confidential. Their website is at the following address: suicidepreventionlifeline.o... When you are feeling desperate and alone, they will support you.

If you would like to speak with me via Skype, we are named as ovacome.support. I am available Monday - Friday 10am - 5pm GMT. I think Texas is 6 hours behind, so that would be 4am - 11am your time, which is not ideal but hopefully feasible for you in the later morning. You can also private message me through this forum or email me at support@ovacome.org.uk

I hope you will get in touch with us, Lifeline, or the US ovarian charities if there is anything we can do to help, it is what we are here for.

Best wishes

Anna

Ovacome Support Service Manager

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The US state care is so jopeless

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THe US health care system is so hopeless people have to rely on charities...which can be very scary ....we need some international action; Maybe UN is the only way......

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I can only echo what the other ladies have said and especially urge you to explore the charities and organisations that can help.

I’m sending you love and the sincere hope that you can find a path through your troubles - please believe that there are people who care.

Best wishes, Ali x

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Hi there

I am so terribly sorry to hear about what you have been through. The fact that people in America have to pay such enormous sums to stay alive is inconceivable to us in the UK.

I am certain that trauma as a result of hospital treatment is way more common than is realised. I had a hugely traumatic second unnecessary laparotomy shortly after the first and lots went wrong too, you have my sympathy. I found counseling and prescribed anti depressants incredibly helpful. This was nearly eight years ago and I'm fine now....you will be too xxxx

Please do make contact with somebody, the staff at Ovacome are superb. But there must surely be some third sector support for cancer patients. Please please reach out to somebody.

I wished I could say something more comforting , but do please get back in touch if you need to.

Much love xxx

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No one should have to go through what you have. I am so sorry. I can give you no more advice than what you already have but I just wanted to say we are all thinking of you and really hope things improve for you soon.

Love and hugs

Louxxxxxx

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I'm so sorry you are going through this. Please reach out to people around you. Cancerland is a very lonely and scary place to be even for those with strong support - and your situation is harder than most.

How about the friends that you mentioned were around earlier? In my experience people are often reluctant to keep pushing for fear of being intrusive and not knowing how best to help. For me, I didn't even know what kind of help/support I needed. I did need to know that people cared but couldn't even articulate that. I have a friend who's husband died several years ago and when I asked her how I could best help she said "please don't forget about me" She was concerned about people moving on with their lives and forgetting her as she struggled with her new reality.

Please make contact with those who showed interest in the beginning, you can divulge as much or as little as you chose but at the very least ask them to check in with you by email as you struggle with this sh-- sandwich that we all have to digest. Don't let any offers of help or concern off the hook no matter how casual - get their email details and let them know you'll contact them - and do it.

How about classmates, contacts, or admin from your MSW program? Are there people there who can help you navigate the healthcare, financial and housing situations? I would think they would be well placed for this type of help.

I believe someone else posted information on potentially useful US links. Also as has been mentioned please do not forget the suicide hotline number.

Can I ask where in Texas you live? You can pm me if you prefer. I know it's a huge state but I often spend time in the Houston area.

You matter very much and there are many people who care and are rooting for you right now.

Hugs, Dee

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