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Back from the castle ... Back from the castle ...

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  #1  
Unread 05-07-2003, 04:26 AM
Back from the castle ...

.. and a roller-coaster ride! The surgeon came to see me the afternoon before my surgery to discuss the letter I had sent him, crying off the tah / bso. He sat on my bed and stared me straight in the eyes and asked "Why?" Unfortunately I had no very coherent reason, so he told me that while he wouldn't do anything I didn't want him to do, I would be going against his advice if I declined radical surgery, that I had a 25% to 30% chance of having ovarian cancer, that it would not necessarily be obvious whether I had it or not during the surgery, that if he closed me up leaving the uterus and right ovary and fallopian tube and I DID have cancer, there would be a probability that it would then grow very fast and be advanced by the time he could operate again in 4 to 6 weeks, that he had seen that happen. He also said that he thought it most likely that if I did have cancer it was early stage and therefore very curable if I had the tah / bso now. I was so frozen with horror by all this that I couldn't speak, and he interpreted that as me needing more time to think.

He sent his registrar round later that eveing to confirm the consent form, but I was downstairs seeing off my visitors so I missed her. She asked the junior doctor on call to do it. He wanted to be sure he was doing it right, so we spent a long time going through every possible scenario and practically wrote a book together.

The next morning the registrar came back (woke me up, I'd had a bad night) and got stroppy with me. That did it for me - I was so tense and anxious by then - and I gave consent only for the mass to be removed, nothing else. Of-course these consent forms also have a rider that the doctor can do anything necessary and she gave me the impression that they would do what they wanted anyway.

I had to wait another six hours before it was my turn for surgery as I was last on the list. My room mate was watching terrible programmes on the television so I spent hours pacing up and down trying to pray while these people who had cheated on their boyfriends with his best mate and didn't know who the baby's father was types screamed at each other.

I've had two minor surgeries before and each time was given a pre-med which made me so relaxed that I was almost asleep by the time I was ready to go for surgery. No pre-med this time, I don't know why. No-one else had it either, it is obviously a new policy. I wasn't expecting it though. I sat bolt upright on my bed as we went up to the fifth floor and I found the sight of all the surgeons and theatre nurses lolling in the corridor in their green pyjamas incredibly eerie. I got off the bed and onto the trolley and was then wheeled into the anaesthetic room. I was so frightened by then, of the operation, of cancer, of not knowing what I would wake up with or without that I lost it and burst into tears. At this point the surgeon came in and attempted a bit more hassling over my reproductive organs but I had HAD IT by now and refused to answer. The anaesthetist asked me did I just want to get on with it and I nodded. I borrowed a prayer technique I first read about in Sheila Cassidy's book "Audacity to Believe" and looked for a cross (there was one on the wall above the door where there were four panels) and focused hard on it and managed to pray.

The next thing I remember was being wheeled into my room on the ward. I don't remember the recovery room, but I remember wondering first, which if any of my reproductive organs I had left and second whether I had cancer. My husband tells me that I was quite rude to the surgeon when he came round that eveing but I don't remember.

Basically the news is this. The surgeon removed my left ovary and fallopian tube and a large ovarian cyst on that ovary. He also took some biopsies. He left the uterus, right ovary and fallopian tube. The cyst is "very complex" and contains some "old endometrial material". Otherwise, referring to my abdomen in general, he said "it looked quite good in there". He is still not ruling out cancer, and says that he has a concern that the endometrial material may be turning into "something nasty". Only the histology report will tell. That usually comes back within five working days. Because of the bank holiday, it probably won't come back until Thursday or Friday. A letter will then be sent to my G.P. with a copy to me, so it could be next week before I know.

I have a complicated set of emotions now. I feel total joy that I still have most of my reproductive organs. (I cannot begin to explain why, except that I have suffered many losses through miscarriage etc. and couldn't bear any more loss, I didn't want to become a slave to cancer fear - and I felt this was happening - and wanted to retain control of my own health, make my own decisions and go step by step. None of this is at all logical and I absolutely wouldn't recommend it to anyone else!) I love being home and the sun is shining and the world is so BEAUTIFUL! I am still very much afraid of cancer, but not uncontrollably so. I can honestly say that, so far at least, I have no regrets.

Thank-you for all your kind messages before my surgery which I have just read!
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  #2  
Unread 05-07-2003, 06:06 AM
Back from the castle ...

My dear, Latina,
What a difficult time you've had. It's so hard to control the fear from either the thought of cancer or the unavoidable surgery. Your fear actually got through to your DR and probably contributed to him being conservative during the surgery. But....you got through the surgery fine and it sounds like you're resting comfortably.

Don't worry about being rude to him. It happens all the time.

We'll wait with you for the path results. I'm keeping only good thought for you.
s,
Laura
  #3  
Unread 05-07-2003, 07:53 AM
Back from the castle ...

Dear Latina,

I am glad that the ordeal is over for you and you are back home. I pray you get good news from the histology report next week. Enjoy the sunshine.
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  #4  
Unread 05-07-2003, 08:11 AM
Back from the castle ...

s Latina

I am glad to read you are safely home and managed to remain in control of your own body and surgery. Hopefully the pathology report will be excellent. I too am holding onto good thoughts for you. Let us know.

karenann
  #5  
Unread 05-07-2003, 01:59 PM
Back from the castle ...

I'm glad you're back (almost) in one piece. I know how much it meant to you. It can sometimes be very hard going against a doctor's advice. They don't make it easy for you. I know, I've done it! I will now keep all my fingers crossed for your results and toes too if they were long enough!

Go out and enjoy the sunshine. It's one of the best medicines there is.

Lydia
  #6  
Unread 05-07-2003, 06:12 PM
Back from the castle ...

Dear Latina,

I was so happy to see that you'd posted! I'd been wondering about you and praying for you, and I will keep those prayers going until we hear more news.

I burst out crying just before surgery, too, so I think that's a common emotion. The good news is, you kept your wits about you and stuck to guns that were important to you. If it does turn out that you need another surgery, you'll be mentally prepared to handle it. But I am so hoping that you won't have to go through all of that again.

In medical care, we all have choices. The decision to undergo chemotherapy is a choice. The decision to keep ovaries (or ovary, as the case may be) is a choice. And making diet or lifestyle changes is a choice. When we make a choice, and something goes wrong, we can spend all the time in the world wondering whether our choice contributed to something going wrong. But the reality is, we may not ever know whether the same situation would have resulted from the "other" choice anyway.

I've been trying to pin my doctor down on 6 chemo treatments vs. 8, and he finally said to count on 8 . . . unless my counts are low, I'm physically or psychologically not able to handle it, or I am having super bad side effects. But he said I didn't have to do the final two treatments if I didn't want to, and he added that he hadn't seen any real difference in the recurrence rates of people who underwent 6 treatments. vs. 6. I thus left feeling cranky.

I hope your doctor understands why you made the decision you did. It's your life and your body, and you have a right to refuse all treatment and surgery if you want. I'm glad that you did have the surgery, and that they are now doing a biopsy to see what was going on. If it's benign, you will feel all the better. But if it's cancerous, don't worry. Another surgery will be doable. Though again, I honestly hope you don't have to go through that.

If there is cancer, can another doctor do your surgery more quickly that your existing doctor? Or is it always a 4-6 week wait? I seem to remember that you had to wait a good long while for this first surgery anyway.

But let's not think about that. Let's think BENIGN! Benignity! Benignifica! Benignorama!

We've all been thinking about you and we have of course missed your voice on this board. Enjoy the narcotics, get some sleep, be sure to take it easy, and have your "do you want to make me a roast dinner?" husband to help with the kids so you can heal. ;-)

s!
  #7  
Unread 05-07-2003, 10:25 PM
Isn't it great to be home....

Enjoy it and enjoy the sun!!!

Let us know about your results...

's and ers to you...
  #8  
Unread 05-08-2003, 12:44 AM
Back from the castle ...

Latina:

So glad that you're home, safe and sound! You waited so long for this, and I am so glad that your wishes were respected, in the end!

It does sound like what you had was an endometrioma. They can create some pretty complex, ugly-looking stuff! I would ask your surgeon (or the hospital) for a copy of your operative report and of your pathology report. In the U.S., they have to give it to you...don't know what the U.K. policies might be. But definitely get a copy, somehow. Should you ever need further surgery, it would be very useful to anyone else you might need to see...and of course, I'm praying that this is the end of it for you!

And of course, it's spring, and I'll bet you have some pretty flowers over there -- so, as ((Siren)) says...enjoy your rest, your walks in that sunshine, and whatever pampering you can garner for yourself!



Audrey
  #9  
Unread 05-08-2003, 08:01 AM
Back from the castle ...

Dear Latina,

I have been checking daily for your posts to see how the surgery went. I was so glad about the initial good news and hope & pray that the pathology report provides only good news too!

It takes a lot of courage to follow your heart against your docs advice. Only you know what is best for you and as many who have had cancer can attest....sometimes you need to follow your "gut" feel. There is something about a woman's intuition that cannot be ignored.

Good luck! You will continue to be in my thoughts and prayers.
  #10  
Unread 05-08-2003, 10:34 AM
Back from the castle ...

Latina, I'm so glad it's over for you and you're home. I hope and pray pathology reports are good. Keep us posted, dear!
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