Hi all - I have been reading your updates and truely insipired! You guys are the best :) I know many of you are going through chemo / radiation - its sounds like a real up and down journey - the doctors have told me I don't need that at this stage - but I have been booked in for a Radical Trachelectomy on the 23rd October (I am 34 and still yet to have babies..) so the think this is the best option for me. For those lovely ladies who have had this - what are your scars like? How long did it take you get back on your feet? I need to talk to the doctors about all this (as I was a bit in shock when they told me at the hospital!) any info would be gratefully recieved xx
Hi Debs, I had the same surgery in July aged only 24. My scar is amazing, not what I was expecting at all.. It goes from my belly button straight down. It is very thin at the top and a little thicker at the bottom but i was so pleased with mine. I was in hospital for 6days (including the day of my surgery) and i was pretty much doing a few bits and bobs around the house after about two weeks. They say its a 12 week recovery for this type of surgery so i have about 3 weeks to go :) I pretty much feel back to normal but get myself upset when I hear of other people having babies as I too have none. Any questions you have feel free to ask xx
Hi Emma - thanks for the info, I am not sure if they need to 'cut me open' or if they are doing keyhole, so will need to check with my doctor. I think I will be in hospital for about 5 days - so similar to you. I am going to get signed off work for the rest of the year (that sounds like a really long time!) so should be in line with what you have experienced. A friend at work brough her little one in today (her baby is less than a month old!) so it was wierd to think that my options will be limited in the future - no normal birth and the higher risk of miscarrage etc - but at least we are alive eh?! I think we just need to remember what we are going through and know that what doesn't kill us can only make us stronger - and we will actually be stronger people having been through all this - and when we have babies, we will appreciate them that much more - knowing what we have been through and how it could have turned out so differently. I am not out of the woods yet, but staying positive.. I will keep you posted on my recovery - and will no doubt be panic emailing the day before the surgery, I have never gone 'under the knife' before - so I am sure I will be all over the place!! xx
My experience is much like wee_linz. We were diagnosed around the same time. I had a radical vaginal trachelectomy. I think the little scars are from the lymph node removal, but I don't know for sure. I have 4 as well. One each side on the front of my hips/belly, one in my belly button and one in the middle below my belly button. They are about 1cm in length. One has almost disappeared. They don't bother me at all.
Recovery was same as wee-linz as well. I felt really bloated and huge after surgery - ironically I looked 4 months pregnant! I was in hospital for 6 days. I went home and took things relaly easy for a week, and started moving about. Initially my thighs swelled up, but resting with my feet up cured this. After a couple of months I was back riding horses.
I have numbness in my left thigh and the left leg is much weaker than the right. I got pins and needles and it was really sore at first, but that went. I cannot feel hot or cold in the left thigh still, but I use that leg to rest my hair straighteners on, so it's almost a bonus.
All in all, I would say that the procedure and the recovery was not that bad. I hope that has helped put your mind at rest a little. I'm 36 and have no children yet - and it's rough to see people getting pregnant and having babies since I was just about to start trying. I have been told I am not allowed to have a go until March next year.
I have had one complication though - my uterus has closed up (unlike wee_linz, I do already have the stitch in place) and I need to go back in for surgery to be re-opened up. I have not had a period since the operation and every month I get pretty bad cramps. I think I'm slowly filling up. But I need to stress, this is the exception rather than the rule. Ask your doctor whether they are going to put a stitch (cerclage) in place when you have the procedure.
Sorry this was so long!
HI Linz, thank you for message, I am not sure if I having keyhole or not- so I will have to check with my doctor. It is great to hear you are back on your feet - and wokring for a pre school is probably pretty active work! :) You are brave having it recorded for training purposes! With my luck it would end up on You Tube.. .! :) I work as an HR Manager, so it is pretty stressful work, so going to take as much time off as I need. Pretty much said I would need the rest of the year off. I need to ask about the stitch thingy - as I am a bit confused how you can still have your period if you are stiched up! How can anything pass through? I think these questions are probably a bit stupid to be asking on a forum - so it might be best to ring a Macmillian nurse! I was a bit in shock when they told me about the op / MRI etc etc - so lots of quesitons now coming into my mind that I didn't think about.. I will keep you posted anyway on it all - take care and thank you for sharing xx
I can answer the stitch question...
It's not like they stitch the hole up, they put a ring around the bottom of the uterus to create a tiny 'neck'. Like if you had an open paper bag and tied it with a hair band. Does that make sense? It's enough to let the menstruation out. Or it should be. Mine has closed over.
hi Cervy - no worries, I like to talk - so my posts are always really long too! :) Strange about the thigh swelling etc - I have read removing the lumph nodes can cause lymphomemia (sp?) so the swelling could be do to that? I think I need to get my 'nodes' removed too. All of your messages have put my mind at rest - as the surgery date is getting closer and closer I guess I am starting to think about it all. I am sorry to hear you have had complications and you need to go back in for surgery, will that be the same amount of recovery time? Or are you in and out? I hope its not too long - I imagine you felt like the worst was over and then to have more stuff go wrong must be hard... but if the cancer is gone, then that can only be a good thing. I hope that they get it all - once I get the 'all clear' recovery will be a breeze I am sure.. although I don't know how much Jeremy Kyle I will be able to take! Thank god for LoveFilm - I think I will get through about 3 movies a day - just to avoid day time tele! Anyhoo, take care hun, I'll keep you posted xxx
ahhhhh - yes! thank you.
More information is better than less. And of course, I can only go on my experience, and I'm not a doctor, so keep that in mind.
yes, very tough to have to go back in. I hoped it was all over. I only took a week and a half off work - I'm kinda jealous your work has given you so much time!! I work from home, so it was a bit easier for me to get back into work (I work in IT).
Can I ask what part of the UK you are in? I'm in Cheshire. I had excellent care at Wythenshawe - couldn't ask for a better team - and I'm on the NHS.
And yes! Daytime telly is worse than the cancer!!
Agree totally with Liz - nothing was half as bad as I thought it would be. My mother had cervical cancer when I was growing up and I had memories of her being in a lot of pain. She had a rad hyst. I was only 8 so I might have been just shocked at seeing her not running around the house and bossing us about though.
thanks Linz - that makes sense - of course, if you can still get pregnant, the little tadpoles must be able to get up there! It is really comforting to hear that its not so bad as what is running through my head... I know what you mean about tampons, I hate not being able to wear tampons - I have done for 2 periods now (had a colospcoy and then LETZ) so I suspect it will be the new year until I can wear them again. Small price to pay I guess- but I haven't used pads in like 20 years! They are hard to get used to again eh? Anyway - need to sort my laundry out and get ready for work (a woman's work is never done.. :o) ) - this site can take up your whole evening! thank you again - speak soon xx
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