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Sandra3

Feeling like a broken doll...

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Hello friends!!

So update on my status: I'm still exhausted! and still sick...

Little recap : had reconstructive surgery in July (tumor removal and arm lift) started to have cardiac symptoms a few days later. Long story short, several doctors, I finally found a professor in hematology to work on my case on September 10, got to see a gyn the same day and do many different exams.
I just got most of the blood tests results ( some of them being genetic testing it took a long time) and there is several abnormalities but lucky nothing genetic.

Anemia is there and it would have been really bad without the iron infusion I had on 9/13. But since that day,I had several infections, I'm on my 3rd round of antibiotics since October, started again high dosage of cortisone yesterday because my asthma has been out of control. I had two bad attacks on the train on Wednesday, it got so bad passengers ask the train supervisor to go check on me! I had to explain I had asthma and was taking medication, it takes some time to quick in, but I would know if I needed medics...no worries! that's when things like that happen, you know people around freak out!

When I'm that sick I can't have an iron infusion because I have a high risk of allergy, and can't get it when being sick. So my ferritin level is falling a lot since mid October, and I'm almost under the minimum again.
I also had an MRI of my pelvic area two weeks ago and it confirmed the previous diagnostic, so now the question is about having or not an hysterectomy. And the chemical menopause is now out of question, hormonal treatment made me really sick...again no a surprise....

Must say I'm stressed out...an other surgery after July's fiasco is just too much in such a short period of time but what to do???
The clock is ticking, if I want to be able to go overseas again, I need to be in shape and departure is planned for the Summer...training during Spring etc...tic toc tic toc..

I will see an other surgeon on 11/19 to have a second opinion, apparently there is other options that are less invasive (a kind of DNC or an other method who's like burning the inside), but that might not stop completely the hemorrhages...and since my boat is already shaking, one doc told me that the MRI might not show everything and it could hide C tumors so he did recommend strongly surgery (oh my gosh!!).

Anyway, the highlight of the week was to know that I had no genetic disease (I mean...not an extra one) but I also tried for the first time osteopathy and it did help with a few pains and even my breathing!!
Tomorrow I'm taking my youngest to see if it can help her too (weak knees, that's from my husband's side, she has been wearing ortho soles in her shoes but that's still not enough).

I'm glad I took a higher premium with better coverage this Fall, because those endless stories are costing a lot and I'm lucky to have a good national insurance, but I discovered our system got worth those past years while we were away, now if you don't want to wait three months, you just go private and pay more...my new premium coverage will give me a better refund on the part the national insurance doesn't pay...since July, all that money could have paid for a really nice trip on a sunny beach ....being sick does cost more those days...so much for the "perfect heath care system in France"!! (and I don't pay less taxes!! pretty much the contrary! argh!)

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  1. DutchSleeve's Avatar
    Oh Sandra, I am so sorry that you are so sick...

    I have to say, that my hysterectomy was the best decision I have ever made, second in line after my sleeve.
    But then of course, I already was mother of two.
    No more bleedings, no more pain, it was a relieve.

    I sure hope that that second opinion will give you more clarity on what actions you want to take next.
    Did your bloodwork show cancer markers?

    I wish you much strenght and wisdom...
    Feel better soon!
    I will wave at you when we pass by.
    Kisss...
  2. Ann2's Avatar
    Man, Sandra, you are really fighting on multiple fronts right now. I wish I could offer more than just emotional support. But I'm definitely sending you that.

    <3
  3. Stacey03's Avatar
    I hope things improve for you Sandra. The burning inside thing you mention is an ablation. It's like lasering the inside of the uterus ( there are a few different methods of doing it) It often has excellent results so could be a consideration before hysterectomy. But then there is the ?cancer problem to consider. Im sure you will be guided to the best decision and I hope things become better soon for you.
  4. Sandra3's Avatar
    Quote Originally Posted by DutchSleeve
    Oh Sandra, I am so sorry that you are so sick...

    I have to say, that my hysterectomy was the best decision I have ever made, second in line after my sleeve.
    But then of course, I already was mother of two.
    No more bleedings, no more pain, it was a relieve.

    I sure hope that that second opinion will give you more clarity on what actions you want to take next.
    Did your bloodwork show cancer markers?

    I wish you much strenght and wisdom...
    Feel better soon!
    I will wave at you when we pass by.
    Kisss...
    Thank you for your message my friend!
    So far the genetic testing was done with the hematology department, they were looking for blood related diseases and targeting specific markers I don't think they looked for those types of cancer markers (I just looked at my resultsand saw nothing but I don't understand all of it). But since I have multiple tumors, they can't really know what each one can be...and I just had negative biopsies that turned into positive so...who knows!. Plus the pre cancerous results in July was not conclusive, I asked my doc to ask the lab to retest the samples....those idiots lost my samples!!
    It's just one thing after the other..

    I will ask the surgeon next week what she thinks.. she is actually specialized in cancer too, that's why I picked her.
    And the hospital where she is doing her surgeries is also used to treat people with pulmonary issues...one stone two birds...

    I was not planning on having more children, but I'm more worried about the surgery because it's an other way to get infections and my immune system is right know under highstress. If bleeding and pain could go away in an easier way I would take it right now...but that's going to be more complicated...unfortunately...

    Please let me know when you are around!
    XX
  5. Sandra3's Avatar
    Quote Originally Posted by Ann2
    Man, Sandra, you are really fighting on multiple fronts right now. I wish I could offer more than just emotional support. But I'm definitely sending you that.

    <3
    Thank you Ann, that's already a lot!!
  6. Sandra3's Avatar
    Quote Originally Posted by Stacey03
    I hope things improve for you Sandra. The burning inside thing you mention is an ablation. It's like lasering the inside of the uterus ( there are a few different methods of doing it) It often has excellent results so could be a consideration before hysterectomy. But then there is the ?cancer problem to consider. Im sure you will be guided to the best decision and I hope things become better soon for you.
    Thanks Stacey, I hope too!! So tired to be so tired all the time since July: it's been like for ever!

    The burning is, you are right, a way to take off part of the inside lining, the same way they so it with a scalpel with a DNC. I was told about the manual option (scraping?), but since I do hemorrhage easily, and can't take coagulants, burning would be safer.
    But the burning (called NOVASURE) is pretty new, and seems to work only 50% of the time. And the big question is what if big C is hidden in there?

    The radiologist I saw is specialized in those diseases (endometriosis and adenomiosis) was the one telling me she had no way to know if a tumor was hiding in there because of the density of the muscle which make impossible to see tumors even with the MRI. And that the usual annual pap test is not that efficient in my case, could get false negatives....because the only way to make sure would be to take off the whole uterus and analyze all tissues..

    I hope to have more answers after my next consult!
  7. DutchSleeve's Avatar
    Well, actually, we ARE around...
    We just spend the night in Mailly le Camp.
    About 50 km north from your place...

    But you take care of yourself now, I will wave at you from a distance.
  8. Christie13's Avatar
    Keep us posted after your appointment on the 19th. We are here for you whatever needs to be done. I think for me, and maybe this is because my mother died from cancer, I would error on the side of caution and do the hysterectomy. I say this out of love!! I will keep you in my thoughts and prayers. You are a truly wonderful person Sandra and I am glad I met you.
  9. DutchSleeve's Avatar
    Hi Sandra, how are you doing?