Thursday, 21 August 2008

Decisions and Choices

...
Yes, it's really me! I'm back from hospital early, because there was no surgery after all.

I went in on Monday morning and left on Tuesday midday. It felt very weird yesterday - being home when I should have been in a hospital ward for at least four more days! The reasons behind it are complicated. I've needed a day or so to get my brain together enough to come here and explain what happened,so my apologies to everyone who has had to wait till now to hear how I'm doing.

Life sometimes sends you challenging decisions and choices. This week I had to deal with a big one. I knew already that my gynaecologist (from here on the "gynae" as it is easier to type!) had reservations about this surgery, but it wasn't until Monday that we had a chance to sit down together and discuss all the pros and cons fully. On Monday I spent a full hour talking to the gynae and then another long talk later in the afternoon with the surgeon. They both were of a similar opinion about my surgery.

To put it simply the hernia is easy to do and will be rescheduled for some time in the future. The hysterectomy and organ clearance are not at all easy or simple. To ease any female reading this and feeling anxious - I am not the average case. My gynae once described me as the worst case of endometriosis he'd ever experienced. Lots of women have hysterectomies and feel loads better for having the surgery. Women with endometriosis are more at risk having surgery, but still can find surgery very helpful, I'm just not going to be one of them. Of course surgery always carries risks, but in my case the risks are most likely higher than the possible positive outcomes.

If I were to try to put it into percentages I'd say it would look like this:
20% chance this surgery would be successful in easing my pain,
40% chance this surgery would accomplish nothing,
40% chance this surgery could be dangerous and/or damaging to other internal organs.

Added to that I would have had to have an extra epidural for pain control on top of the normal anaesthetic. Put that way the whole idea of surgery started to look a lot more scary! My gynae admitted that he was unsure whether he would be helping me or making things worse. He was clearly very worried, although he tried very hard to be soothing and optimistic. The surgeon was even more honest and direct. He said (more or less) that my worries were both sensible and justified. This surgery, given my own personal state of health, is serious and very difficult. He suggested I talk to my family and then make my decision. He said something that helped enormously. He said I had no reason to feel embarrassed or stressed if I wanted to say "No, I don't want this surgery." He said I could even wait till I was being wheeled into the operating room and say "no!" and he'd be perfectly happy to stop right there.

He said that it makes no sense to him that in life we always have choice and yet when it comes to something as vital as our own bodies we tend to feel we are helpless.

Choices and decisions... not easy things ever, but even harder when they relate to something as complicated at this! I did a LOT of thinking. If I said no to surgery it meant accepting the fact that my health issues are here to stay - I can manage them and ease them, but I cannot cure them. I spoke to my family, explained what could go wrong as well as what could go right, and they all agreed with the decision I'd made - to not have the hysterectomy and organ clearance.

On Tuesday the surgeon took time out of his very busy schedule to come see how I was. I told him my decision... and he smiled. He told me he would come back once I'd spoken to the gynae. I had a wait of an hour or so before then. A very loooong wait it felt too! When my gynae arrived and I told him he just burst into this BIG smile. It was very obvious he was very worried about this operation and that he felt I had made the right choice. I suspect that he always hoped I'd opt for no surgery, but had not wanted to sway me either way. He had simply given me all the facts and then waited for me to decide. His last comment was to the effect that the medical profession is starting to realise that endometriosis is a chronic illness that needs to be managed rather than something that can be cured or fixed with surgery.

I am very lucky - I had two extremely conscientious medical professionals who truly wanted what was best for me, but also wanted me to be the one who had power over my own body. They told me all I needed to know, they gave their opinions, but ultimately they let me decide what was right for me. I was told everything I needed to know and always treated as if my opinion was as important as theirs - as it should be considering it is my life and my body.

Not everyone is so fortunate. The last time I was in hospital I met a woman whose doctor never told her the negative side-effects her surgery would have. She is happy with her choice to have surgery, but still angry that she was never prepared for the major life changes she had to face after her surgery.

Coming home still felt very strange. I have been bracing myself for this for months, also giving myself "pep talks" on the benefits this surgery could have for me. Now everything is changed and nothing is changed. I have made one of the biggest decisions of my life and the result of that is I am home exactly as I was before. Everything altered by not being altered. It feels rather surreal, but good. I have absolutely no doubt I made the right choice.
...

14 comments:

  1. WOW. Health decisions like these are always hard, especially as we rely on those who know to make us understand what it is we are supposed to be deciding. I wish everyone in that profession understood it wasn't their decision and they need to present both sides! You are lucky to be getting the whole picture, even if it might not be the picture you wanted.

    I hope everything works out well!

    ReplyDelete
  2. Thanks PV

    Yes, I was very lucky to have two great doctors/surgeons I knew I could trust.

    ReplyDelete
  3. Good to have you back in one piece.

    Russell

    ReplyDelete
  4. You're very lucky to get twogood doctors watching over you.With their explanations and blessings, you have made the right choice. I can almost feel their relief when you told them you're not going ahead with the surgery. While your medical condition still exists, at least you know that this is what you'll be experiencing down the road whereas if you have opted for surgery, the path after that is unknown.

    I am saying this because I am seeing the result of a surgery in my mum's case. She had a hysterectomy about 30 years ago without seeking another doctor's opinion. While some people recover quickly and get on with their life, my mum is one who had never fully recovered. Without any hormone reproduction, after complete removal of her reproductive organs, she suffered from hormonal imbalance. The hormone pill dosage went up and down according to the doctor's wishes and she never felt well for a day.

    Recently when the doctors discovered a tumour in her brain, we were given 2 options - surgery or radiotherapy. Being the one who brings her to the doctor everytime, I was in a dilemma. Finally, I asked the doctor, what would if do if she were your own mother. The doctor said, "Radiotherapy" and that was what my mum went for.

    Well, yesterday I learned something which I will share with you here. "Remember that not getting what you want is sometimes a wonderful stroke of luck."

    ReplyDelete
  5. Thank heaven you had the doctors you did. Now, even though you decided against the surgery, knowing how much worse things could have been will hopefully make the way things are more tolerable. Though, I truly wish you didn't have to experience any pain whatsoever. I'm so relieved you're okay. Much light and love to you, Michelle.

    ReplyDelete
  6. I can't imagine how difficult it must have been for you to make this decision. I hope the doctors and you working together will be able to find ways to manage your pain. Best wishes to you, Michelle.

    ReplyDelete
  7. Ting, Epiphany and Daisy,
    My love and thanks to all three of you. :-)

    Ting

    I'm sorry to hear about your mom's health problems. At least she has always had a great daughter to watch over her, if not always the best doctors! I hope this new fight with cancer ends in victory for her.

    Piff
    Much love and light to you! I love the new name, BTW. :-)

    Daisy
    It pretty much amazed me myself that I made this decision. I'm the type that can take hours to decide between two flavours of ice cream so this was a small miracle!

    ReplyDelete
  8. WOW! LUCKY you to have such wonderful doctor and surgeon! :-))))

    I'm GLAD you feel good about your decision and that you weren't pushed around to make a certain type of decision. ALL THE BEST for you, M!!!!!

    ReplyDelete
  9. The positive in all of this is that you're in control of your choices regarding your health, with the support of two conscientious doctors and a caring and supportive family. That must be empowering. Good to have you back almost immediately, Michelle! J.

    ReplyDelete
  10. Thank you Amel and J

    Yes, I am very lucky. :-)

    ReplyDelete
  11. What a roller coaster ride! I'm so sorry you have to continue putting up with your "gynae" issues. I remember my step-father consulting a doc on his severe back pain and they explained to him the surgery that would be required to fix it. He decided right then and there that his back just didn't hurt that bad.

    Given the choice, I'd have made the same one you did. Kudos to those docs for being so supportive and for not being the types of docs who just want to cut no matter what.

    Sending good energy to you right now and wishing you a happier, healthier future despite the fact that you aren't getting the surgery you had once hoped would fix you.

    ReplyDelete
  12. Genie

    Thank you. What you said really made me feel good. :-)
    ...and the story about your father-in-law made me chuckle. I soo understand his point of view! ;-)

    ReplyDelete
  13. hello, here via Jean-Jacques blog, and am very impressed with your strength in making a careful, informed decision. Best of wishes - I understand your comment "everything altered by not being altered," - choosing to live in the present and accepting what "IS" without the constant quest for change is a huge shift for most people. In these circumstances it must feel incredibly profound.

    ReplyDelete
  14. Hi Hayden

    Thank you and welcome to my blog. :-)

    I was thinking about what you said here yesterday. I think modern society is into quick fixes. Getting old? - face lift. Don't like your face/body? - plastic surgery. Don't like your spouse? - divorce. We're not geared to accepting and making the best of things. We want solutions and cures. Not that that's a bad thing in itself, but sometimes it leads to us being dissatisfied with what we do have, because we keep thinking there's got to be something better.

    So we overlook the fact that sometimes what we already have is pretty darn good in itself!

    ReplyDelete