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A summing up. A summing up.

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Unread 06-15-2003, 09:21 PM
A summing up.

Dear Hyster Sisters on Cancer Concerns,

I have seen my gynaecological oncologist for my six week check. (Yes, six weeks post-op, I can't believe it!) He finally laid to rest the last lingering little doubt in my mind, which went along the lines of "He must think there is cancer somewhere, otherwise why would he want to schedule follow up appointments?"

However, I told him of our adoption application, started before my ovarian tumour was discovered, and asked him if there was any reason why we should not go ahead now, and he said no. Moreover, he offered to write a letter in support of our application if anyone got jittery about the word "tumour" as, he said, they sometimes do. (Boy, is he right about that!)

He examined me and said that I was healing well, in fact complimented me on how well I was looking. I think we are friends again, which is nice.

I have my first follow up appointment in four months time - October. At my follow ups I will have a clinical exam and blood tests, presumably including the CA 125. I will have ultrasound scans at some follow ups but not all. He said he couldn't predict how long I would be followed up for as it would depend on clinical instinct (or was it intuition - I don't remember) and what, if anything, was found, etc. but he implied that the follow ups would not be indefinite. I am grateful to be having these follow up checks actually and don't mind how long they go on for. The reason for them is basically the extreme rarity of my tumour which makes it impossible to predict re-occurence.

My 15 year old asked repeatedly if there was a photograph of my tumour he could look at while I was in the hospital. I think he was being tortured with lurid imaginings and knew instinctively that the reality would be preferable. Satisfying this need was not high on my agenda at that time, but I asked at my six week check whether there was a photograph and my doctor gave it to me to take home and said I could return it at my next appointment. I might take a copy of it. It is in glorious technicolour. What can I say, there is this pinky-red ball about the size of a canteloupe above my uterus and dwarfing it, with creamy coloured veins running through it. (Hey I would never have dreamed I would be posting this on the internet!) I am so glad it is gone. Although I had no very definite symptoms, I actually feel so well now in comparison with before surgery that I believe the tumour was undermining my health and well being quite considerably, but in a way that had crept up on me so that I didn't really notice.

I have been following up all your news with great interest and occasionally with my heart in my mouth, but not posting very much now as I am no longer sharing your journey and therefore feel that any comments I make risk being presumptuous. As Karenann says, the cancer journey is one that only those who have been there can really understand. I had a very real glimpse of it in my own life in those weeks waiting for surgery, during which the support, understanding and information unstintingly given on this board was a blessing too great for words to convey.

Another thing that Karenann said, (what an oracle!) that rang very true with me, is that making treatment decisions about cancer (or suspected cancer) is about taking the road that you will regret the least. I am happy to say that I have no regrets. My periods are regular again and no longer excessive, my libido is doing great - need I say more! I know I may develop cancer in the future but I am content to cross that bridge if and when I come to it and I am not afraid.

I got my Hyster Sisters book at last, four weeks post-op, and enjoyed reading it. Do you know what - I think another book is waiting to be written about Cancer Concerns. The knowledge, understanding, insight, compassion and sheer wisdom I have found on this board is really special. Maybe one of you or several of you might think about this - you have so much to offer - just a thought.

So, finally, a big thank-you to all of you who supported me during the past, sometimes very frightening three months. Words are inadequate to convey just how much you helped me. I will never forget you and will continue to pray for you.

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Unread 06-16-2003, 04:41 AM

Your post was so lovely. I am so glad that you are doing so well. Since I use to work in surgery, I have wanted pictures or video of any procedures that I have had if done. But they were never done for one reason or another.

But most of all I am glad that your situation turned out for the best. In some ways I wish that I would have went and just had a look see, but I was so scared that it was cancer that I had the works taken out. Which if I would have done it that way they would not have found the cervical cancer.

But most of all I am glad that you are doing okay, healthy, have a great libido. I do hope that everything works out for you in every way.

BYW I didn't know you was a Jane as well.

's to Jane from Jane(aka known2b)
Unread 06-16-2003, 06:54 AM
A summing up.

Dear Jane, Thanks for your lovely note and the update. I wish you much good luck with your adoption and of course, future health. You, too, will be in my prayers.

With all good wishes,
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Unread 06-16-2003, 07:06 AM
A summing up.

Dear Jane..

What a wonderful letter. Thank you for coming into our lives and allowing us to enter into yours.

Just because you are not going down the same lane as we are does not mean that friendships have to be ended. Please keep in touch and let know how you are doing. That way you can also check up on all of us.

Enjoy your summer..

Unread 06-16-2003, 06:25 PM
A summing up.

s Jane

What a beautiful tribute to your buddies on CC. Kinda bittersweet. I am glad you are healthy and ready to return to life full steam ahead. You will always be more than welcome to come and visit and post here. After all, you have a story to tell yourself. Many times great news awaits the other side of surgery.

A book by the CC ladies!! A great idea. Now if I could just get us all to a mini meet in Disney World, we could get to work on it right there.

My very best wishes to you and your family.

Unread 06-17-2003, 04:14 PM
A summing up.

Dear Latina,

You are such a wonderful writer. I have always enjoyed your posts here and hope that you won't just disappear into the void. While your journey ended with a benign diagnosis (such a blessing!), your pre-operative experiences were very similar to our own. You have a lot to share with us, so I hope you will continue to do so. Rest assured, no one here would think you presumptuous. You've endeared yourself to the entire community here, so we wouldn't want to see you disappear.

Thank you for sharing such lovely sentiments with all of us.

Many hugs and prayers for you!
Unread 06-17-2003, 06:12 PM
A summing up.

Thanks Latina for the lovely words. Please keep in contact. We want to know when your precious baby comes.

Always celebrate good news!!

Ruth S
Unread 06-17-2003, 10:55 PM
A summing up.


I, for one, will miss your lovely, articulate "voice" around these parts. Your story presents another possibility to those who still await their answers. I know, firsthand, how those "other" posts in my own pre-op days gave me hope that I'd have results other than the obvious.

I am interested in the oncologists' followup exam schedule. I was discharged by the oncologist 8 wks after my surgery, although I'd bet my risk, with all the endo, is slightly higher than the norm (have the extra "whammy" of family history). My GYN and I are going to discuss this on the next visit, and I think I'll bring your post with me to ask about.

How wonderful that your recovery is going so smoothly. And it's probably not a surprise, that feeling of well-being. Any mass that size, cancer or not, does take it out of you, but it's such a insidious, gradual downward drift that you don't "catch up" to it until much later. That's the h*ll of ovarian CA...it sneaks up on you, disguised as "fatigue" or "IBS" or "endometriosis". That's why the work that so many of the CC sisters do in advocacy is SOOO important. Maybe the next sister will catch things "in time" thanks to more awareness..and stories like Siren's, Karenann's (and yours and mine).

I hope you check in now and again as you move on in your life. Your generous heart is remembered by many!

Unread 06-19-2003, 02:00 PM
A summing up.

You ladies are just WONDERFUL! When I first joined this message board, I thought it might help me to cope with illness, treatment and possibly even death. What I found, aside from the information and support, valuable in itself, was abundant life - people living with vigour, courage, humour and endless compassion (never pity) for the struggles of others.

I was afraid it would be inappropriate to continue participating - here's why. The day I got my CA 125 results, which, together with the nature of my ovarian mass, made my G.P. quite convinced I had ovarian cancer (she more or less told me, nicely, to face up to it), I got a 'phone call from a friend. I hadn't heard from her for a few weeks. She told me she was expecting twins and was very excited and pleased about this. I congratulated her. She then asked me how I was. Reeling with shock, I didn't stop to think but just told her: "I have a large ovarian tumour and my doctor thinks I have cancer". Her response, after a horrified pause, was to say something to the effect that oh well never mind, God obviously was sending me this trial for my own good and that it was a great opportunity to learn and grow, etc. etc. She then went back to prattling happily about her pregnancy.

This is a good person, a very religious person. But her words did not help. In fact I couldn't stop myself thinking, "How dare you tell me that it is a good thing that I might die when my baby is still a baby and then go on and on about how wonderful it is to be having yours, you MONSTER!!! (You see I am not always such a nice person!) Her only mistake was to have absolutely no idea of what it was like to be in my shoes. This is a mistake that I would really hate to make.

However, I do remember, on that same day, posting here and getting lots of supportive messages, including one from Clarisse, who had had a tumour similar in size to mine but a much higher CA 125 and whose tumour had turned out to be benign. That did give me a huge surge of hope, in fact enabled me to stop crying for the first time that day. I believe that that would have been helpful even if I had turned out to have cancer. I would then have found a new hope (e.g. I will beat this thing). Hope is life giving in and of itself.

And I just don't want to miss out on the news when Maureenie's baby comes home or Rosalie has her first grandbaby or Karen's son becomes a doctor or Siren meets Dr. Right!

So your very kind words encourage me to continue checking in here from time to time, if that is okay with everyone. Apart from anything else, who (apart from my closest family and friends) but you will understand the nervousness and significance of my four months follow ups?!

Audrey - I have a photocopy of my histology report. If you think it will be of any help for me to share any of this with you, I would be very happy to - just PM me.

Unread 06-19-2003, 02:10 PM
A summing up.

Jane- You write so beautifully. Get together with Georgene for this book idea. Your side needs to be told as well.
oxox karenann

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