Hello ladies,
I have been reading quite a few of your stories over the last month and a lot of you have described exactly how I have been feeling and it has given me comfort to read how strong you all have been under very trying times.
I had an abnormal smear in April, called to the colposcopy clinic in May, doctor didn’t examine me just told me the cells were higher up and I need a Lletz with a top hat under GA and not to worry it was “not cancer”! So I have two lovely holidays and delayed the procedure till Sept when the kids were back at school (2 teens 13 & 14). The day of my colposcopy I was pretty chilled until I met the consultant who started to mention the “C” word. I burst in to tear told her I had been reassured it wasn’t etc and she said she would see me after the procedure. She did and said she thought she had removed it all (all what I thought) and would rush my biopsy through. A week later I am sat planning a few spring breaks away with my hubby and just before I booked it the calls comes in. She said could I come and see her, still thinking it’s no biggie just tell me, she breaks the news it was cancer and the margins weren’t clear. It was the biggest bombshell ever, my hubby and I cried for about a week. We did go and see her, nurse waiting which you know isn’t great and she told us what she knew. She requested an urgent MRI and booked me in with the consultant the following week. I left with the high hopes of the best outcome a Radical hysterectomy. Luckily we saw the consultant the following who reassured us it was stage 1b1 and early stages. I am hoping they have set a date for surgery for the 25/11.
My questions to you ladies of experience are -
Surgery sounds like a suprise, meaning lymph nodes removed and if they are clear they proceed with the hysterectomy. Is that the norm? They have not made much of a deal of my MRI just said the nodes were slightly large but they think that is due to the colposcopy.
Were you giving any info before surgery (in the UK) about what to bring, special diets before etc.
Have any of you who have any the hysterectomy had problems with your bladder after surgery? This is keeping me awake thinking I have to relieve myself 4 times a day. I dread to think of it
Does anyone know how high the risk of lymphedema is? I think I am winding myself up and should just relax as I type this I know I should stop with all the questions so I think I will end it there as I could go on and on.
I keep telling myself I feel great and to stay strong all the best to each and everyone one of you specially the ladies who have just been given the news. The tears will stop and you will stop shaking and become strong xx
im sorry you are going through this emotional upheaval as it does drain you physically and emotionally. The good news is that you will be ok! 1b1 means you have a small tumour that is confined to your cervix. They will proceed with the hysterectomy if your nodes are clear. If the nodes are not clear then they would stop surgery and you would go on to have chemorads, which is not bed either.
There are many previous posts on what you will need for your hysterectomy and if you read through these posts you will not only get a list of things that will help you recover but get some insight on how you might feel. If you search in the search bar you will have more then enough reading material to last you until the 25th. The risk of developing lymphadema is low and try not to worry about maybes as it will do you no good.
Try to focus on what you can do to prepare yourself and your family. Make extra meals and freeze, so some Christmas shopping, prepare to be out of commission for a few weeks.
You will be ok regardless!!!!! Drink lots of water and go for some nice walks as the fresh air will help mentally!!
and... post as much as you feel. We are all here for you.
Lolli888 Thank you so much for your reply, it is really appreciated. I have been trying to make the most of the time before my surgery, actually started running again this week after 5 weeks off due to my colposcopy. I was a bit of a a wimp but finding out it was cancer probably hasn't helped. As for making meals I think my family can pitch in and sort ;) I will guide them from the sofa!
Wishing you all the best and thank you again for your adivice :)
Sorry you have to go through this, but as Lolli says, you're going to be just fine. Amongst all the assorted things for entertainment, your hospital essentials are; nightie, not PJs, peppermint tea, a cushion for the journey home (goes between seat belt and tender tummy)
I have to say I am really surprised to hear that you were allowed to postpone a top hat for five months.
Hi Tivoli, my consultant was suprised too! But the original Doctor cleverly put in the letter he sent to me that I was going away in June. He must of told me 4 times that I didn't have cancer and never examined me (he was running late) so i thought enjoy the summer but that's in the past and I am really happy with the surgeon.
If I am lucky enough to have the full surgery does anyone know are the cuts all over? I am trying to figure out where they will be so I can decide what sort of trouser and undies I will be able to wear. I have already had one of my tubes removed and I remember the cuts in my belly button and top of by bikini line. Will leggins be any good. I really don't want to leave hospital in trackie bottoms ;)
Your abdomen is likely to be really quite swollen and sore. Donkeys years ago I had clamps put on my tubes and had a neat little nick inside my navel and another beneath my bikini line. Sweet. If you are having a radical hysterectomy this is on a whole different scale. I think these days most women in UK are lucky enough to have laparoscopic hysterectomies which I believe is five small holes. Mine was a vertical abdominal incision from my pubic bone to around and above my navel. It was hideous but has now paled and is OK but I am not now, (and apart from the first few months when I was desperately upset about it), nor have I have ever been, ashamed of it enough to feel the need to hide it. I left hospital in one of those velour lounge suit things (not my style at all but the husband had to go and buy me something because up until then I owned only skinny jeans). You may find leggings too tight. Dance trousers that cling all the way up and don't have an actual waistband as such are good, as are harem pants. But you do need to understand that this is major surgery and not a fashion opportunity.
Tivoli, yes I feel lucky it is key hole. I am glad you are not ashamed to show your scars, you should never be.
Fashion opportunity I wish ;) Comfort is my priorty! I find the bands on harem trousers and joggers tight, maybe I should try a few sizes bigger but they may not stay up (lol) yes I too have rock the velour - saw some in Primark yesterday but they were extra shinny! Any suggestions where I can look at the dance trousers you are talking about? Really struggling, it would be ideal to go home in my dressing gown and slippers. Just googled and now can see where in incisions will be.
I think they are called 'roll-top' or yoga pants Here is an image of something I would never spend that much on; https://bambooclothing.co.uk/store/show_product/WZ369-CCM This is better; http://www.movedancewear.com/jazz_pants-move_dani_rolltop_jazz_pants/1741/ I get mine for about 10 euro at the cheap Chinese shops, which we even have on Greek islands!
Tivoli, thank you for taking the time to do that so kind. Luckily you if you are in Greece. We love the islands, Rhodes is my fav. I have managed to find a pair from good old M&S that look to have no band and ordered a size up, hoping they will do the job and I'll check out your recommendations.
My daughter had 1b1 and because she is young she had a trachelectomy to save her fertility it's really hard but try to stay positive that's how my daughter got through it. She is now cured and having 3 month check ups x
Positivepeeps, I think I would be 100 times worse if it was my daughter that would be devastation. I am so glad to hear she is doing well and wish you and her all the best. My Dad had cancer and positivity gave him an extra 11 years so I am a firm believer in the state of mind. Saying that I am having a few low days but treated myself to the most wonderful facial yesterday, it was heaven!
