Hi all,
So I have been promoted up the forum again! Turns out my cancer wasn't as originally thought and is just squamous but has spread to the top of my vagina at the back...so a radically hysterectomy for me in a couple of weeks. I get to keep my ovaries....I've never wanted kids but wasn't looking forward to menopause at 30 so I am glad of that.
Best get stocking up the big pants, peppermint tea and comfy pillows.
I am not having keyhole have it will be a slit across my pelvic area.
I'm registered on the hyster sister site now too but does anyone have any other hints or tips?
xxx
Hi,
I'm so sorry you're in this situation. I hope you don't mind me asking, but have they said why they're doing an open procedure rather than a laparoscopy? Also, have they been able to stage you yet?
Annabel. x
Hi Annabel,
I think it is because they have to push my bladder out of the way?! I can't quite remember What he said now!
It is staged at 2A because of the spread on to the vaginal wall at the back/top but he said size wise it is 1B. He described the tumour as being flat and shallow but my cervix tilts back a lot which could be why it has moved there.
Not sure how to feel as it is a different outcome to what I was told originally.
xx
Hi,
That would make sense, as that would be tricky via laparoscopy, but it might be worth ringing your cancer nurse just to double check and get a concrete answer about why they're doing an open procedure, so you know for sure. The fact that your cervix tilts back and that the spread is against the back of the vagina makes me think this might have something to do with it as well. Do you know how much of your vagina they are removing? It's normally about 2cm in a radical hysterecomy, but what you've said makes me wonder if he's going to do it slightly differently (not in a 'bad' way at all - just in a way that is going to be best for you!)
It's very difficult to get your head around what's happening, let alone to then be told things are not how they originally thought. You are not unusual in this - they go on the information they have at the time, then sometimes they get more information from scans, tests etc and then what is happening has changed, as far as they're concerned. It can feel very unsettling, to say the least! It can make you feel very out of control, and that can be frightening. I've said it so many times but, it really is a roller coaster. I found that how I felt could change not only on a daily basis but on an hourly basis! Just go with it - there is no way you 'should' feel - you feel how you feel. You're probably in shock at the moment so it might be difficult to feel anything very much.
Love, Annabel. x
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Thanks Annabel, your posts are always so full of great information :)
I did ask about the size of the vagina removal and he reassured me it would be the same as with a normal radical hysterectomy. When I had LLETZ under GA they also did EUA so they have had a good rummage around.
I am due on my last ever period in 3 days....I think I have become in a shocked state again, I knew hysterectomy was an option but it feels a bit raw to think about now. Everyone keeps telling me it'll be great not having periods, but I will still have cyclical hormonal changes due to keeping my ovaries. That will be odd!
i will give my nurse a call so I know for sure re the open surgery.
xx
My advise....ensure you have lots of fibre prior to your op as constipation afterwards is not pleaseant!! I had mine in 12th Feb & physically I am well on the mend. I went in with the attitude that this is going to save my life but since I have been quite tearful so be prepared for that just in case. Very best of luck. X
Thank you, I am already tearful so will no doubt carry on that way! I keep getting such tension headaches thinking about it all.
best of luck with your recovery xx
Hi,
Just after a bit of practical advice. The Hyster Sister site recommends a tummy binder - has anyone here used one after abdominal surgery? Also do we do bowel prep too?
My bedroom is on the top floor of the house with steep stairs. Would it be better to stay on the first floor where the bathroom/lounge is? Worried I will struggle to get to the loo.
Thanks
Jo xx
Hi,
The tummy binder is largely an American thing, and that is partly because in US hospitals, open procedures are far more common and the incisions tend to be bigger than they are here. You could ask your consultant or cancer nurse about it - they might say it's best not to 'suffocate' your stitches, but see what they say. They might just say do it if you want to, but that as far as they're concerned, there is no actual need to.
I haven't heard of anyone in this country doing a bowel prep for this op - I certainly didn't and unless someone on the site can tell me otherwise, I don't think anyone here has either. These days, as long as you don't eat or drink anything after midnight on the day before your op, there's no real need to give you an enema. Anaesthetic is a lot more advanced than it used to be, so this just isn't necessary.
I must admit, I did really wish I had a downstairs loo after my op! It took me ages to get to the loo, because you are shuffling about, and rather slowly at that, after your op. If you've got a living room and a bathroom on the same floor, I'd stay there!!
Did you have any luck with asking your cancer nurse to clarify things regarding your open procedure?
Love, Annabel. x
Thanks again Annabel,
I spoke with my nurse yesterday who said don't worry about binders or bowel prep. Phew! She also said they are doing open as that's standard here for a radical hysterectomy and it would be complicated under keyhole. I guess because I have some spread they really want to make sure they can see it all and get it out as it's at the back. Hoping for not much spread as my MRI was totally normal. Fingers crossed for clear margins!
I might set up base camp in the lounge then, I have all my clothes on that floor too and the bathroom so is probably the best place to be. Plus a projector so I can watch trash TV on the big screen :)
xx
Clothes, bathroom and big screen TV - add in a mini-fridge and this sounds like the place to be!!! ;-)
They wouldn't be operating if they were anticipating finding anything surprising, they would be taking a different route, so yes, fingers crossed for clear margins!! :-) Forgive me if I've asked this before - I'm tired today so not as on the ball as usual - but I'm assuming they're removing lymph nodes as well?
Love, Annabel. x
They are taking lymph nodes too, trying not to think too much about what that can mean.
Feel ready for my op now, just want to get on with it. I spoke with my friend who was hospitalised for 5 months and had her large intestine removed. She had a 60% chance of dying, and did at one point, but is here functioning as normal 8 yrs on. Superwoman. My consultant said there's less than 10% chance of me needing radiotherapy too so I have good odds that this op will be curative. Being it on!
xx
good luck joe im glad you sound more positive. i had the open procedure too and defo the living room near the loo.x
Hi,
Don't read anything 'worse' into them taking your lymph nodes - they have to do that as you are stage 2A; it's in the National Guidelines. If they were anticipating your lymph nodes coming back positive, they wouldn't be operating, they would be looking into just doing chemoradiation. They are taking them to protect your future and to be double sure about the outcome.
Bring it on indded!! I felt the same as that immediately before my op (although I was very scared as well) - I was pretty belligerent about the cancer and I think actually, it's a really helpful frame of mind to get you through this 'before' time.
Annabel. x
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Wow!,,, reading all this makes me realise what wonderful women you all are ! Good luck for 19th Jo - you'll be fine .... Thinking of you x x x
Thanks Sam, I am so ready for this op now, bored of waiting. Perhaps packing my hospital bag 7 days before the op date was a bit silly! I really hope everything turns out well for you too at the MRI today. Noisy things aren't they? Like a bad dub step track! xxx
Lol !,,,, 7 Days ??? You are an eager beaver - although that does sound like me ! I can't believe your op is Mon Tuesdy - that seems to have come round very quick ... Good luck with it - and please try and keep us posted on things . Yes the MRI was fine yesterday thanks - bit of a strange experience but fine .. I head earphones on with the radio playing but when the flipping thing started I couldn't hear anything.....
Do you get a dull ache to the side of your pelvis area where your ovaries would be - I keep experiencing this & wondered if this is normal .....
Thanks m'lovlies
x x x
good luck on 19th jo. hope everything goes ok. they will really look after you. keep me posted with your progress xxx
Good Luck for tomorrow hun 
Will be thinking of you ... hope you have your big pants and nighties at the ready !!!!! Keep us posted on how things go and how you're getting on...Big hugs x x x
Thank you so much, everyone, for your support and best wishes. I'm quite nervous now but glad I have this option to be treated
Just waiting to be told what time to start on the recovery drinks. They look gross!
i bought a grabber and lavender pillow from a mobility shop today and the lady told me I didn't have to pay VAT on it because I have cancer. Every cloud and all that!
