New here, in waiting limbo to see if have cancer

Thank you Viv, I had my fon call today, the lady gynaecologist was lovely. I've been diagnosed with endometrial adenomacarcinoma. It's a shock to hear it in words. I have an MRI AND CT Scan on Tuesday so it will be another wait for those results to stage it etc. And looks like a hysterectomy too. 

Oh sending virtual hugs. Yes I can understand it would have been a shock. Wishing you all the best. Glad that the lady gynae was lovely.

I had a text message today re online pre assessment for my hysterectomy, which was sooner than expected. Things can move quickly when needed. Sounds as though they're being on the ball for you as well re the scans. Good luck for those, and I hope you hear the results sooner rather than later.

I'm now hopefully cleared for the operation by the pre op assessment people - the gynae consultant/surgeon had been concerned they may not clear me as fit, given extra factors in my case. But amazingly my heart and lungs were in great condition. So I'm now waiting to hear the date of the surgery. Hopefully will hear this coming week.

I generally refer to what I'm having to family and friends as a hysterectomy, but strictly speaking it's a pelvic clearance, of the womb, ovaries, huge cyst and tubes. Because of how all my organs seem to be fused together down there (either from cancer or endometriosis, or both) there's a very high risk of complications, including bowel and bladder damage during the operation. And they may need to switch part way through from robotic assisted keyhole surgery to full open abdominal, which the consultant absolutely doesn't want to start from in my case.

I've been told I'm looking at best at 5 days in hospital, but if things go pear shaped it could be a month or more. I'm honestly currently more scared about the surgery, and the risk of bowel and/or bladder damage, than whether they find afterwards if I have cancer or not. My very placid husband is also more worried about the operation than anything else. And now that it's getting closer and more real it's very worrying.

I'm also dealing with so many people saying "everything will be fine" (my octogenarian Mum said that 4 times in quick succession on the phone the other day) and "hoping to hear good news from you!". I'm finding that hard. My husband and I cope better by taking into account possibilities, and thinking how we'll deal with them. He's thought that we might need to get a special bed cover if I come home with a stoma bag ... I hadn't thought of that one.

Anyway yes, moving forwards. And I'm also getting ready for hospital by ordering in a spare lightweight robe / dressing gown to wear, and more slippers. Trying to think practically, in between freaking out a bit!

Tomorrow will mark 12 weeks since a gynaecologist found the problem which led after more tests to a suspected ovarian cancer case. It will also be 5 weeks since I saw the gynaecology surgeon who agreed to operate on me, if I was cleared fit enough for surgery (which I was). Still to hear a date for surgery. Hopefully sooner rather than later. The non cancer gynaecology surgery waiting time in my local Scottish NHS board is over 2 years ... I'll be seen sooner, but still don't know when.

I have had a hysterectomy for endometrial cancer in October last year.  You will be well looked after before. During and after surgery.  You are understandably worried and its not doing you any favours, I found.  The pecking of your head by the worry invades your peace.  Try and live each day with doing at least one nice thing.  It could be giving yourself a nice pedicure, meeting a friend for coffee to talk about your oldest memories or your best holidays, or why not take time to write a book.  There is a story in each of us.  My mother wrote her life story on her computer when she was 75 and then published a book.  This type of thing helps you to focus on being positive for all the things in life you are grateful for.  You can leave the cancer in the safe hands of surgeons, in my case robots too.  I wish you a speedy recovery and hope you have a positive experience that you can let your sisters here know about.  All the best. X

Thank you. I think the advice to focus on other fun things is really good.

Unfortunately I'm long-term ill from a progressive neurological disease, largely bed bound now, and asleep for up to 18 hours a day. Which is making waiting for important medical phone calls extra challenging logistically - my husband has been working from home for weeks to answer the phone for me, and wake me to speak. I'd hoped that wouldn't still be needed now ... And we are supposed to have relatives visiting soon from the south of England, though if surgery is offered at short notice my husband wants me to still take it.

But given my limitations worrying won't help. As long as my husband is happy to be here to field medical calls I will just sleep. I woke up today about 4pm.

I do have fun things to focus on. Just when I'm awake. Which is not very often!

Thanks and all the best.

Still waiting to hear a surgery date, but the waiting list secretary says I could hear any day now, with just a week or two's notice of surgery. So in a strange limbo, but getting ready, including preparing a big bag for hospital. I will be in hospital for at least 5 days, but it could be a month. It's a long stay. We may also have to rearrange upcoming things when I get that call. But soon, hopefully. Way over the cancer waiting list treatment/surgery target time scale. But hey, not two years as many other women are waiting for gynaecological surgery from my local NHS board.