Back in June, I had my first op to remove what they thought was a large ovarian cyst. After histology, this was confirmed to be a muscinous tumour and on Tuesday next week, I go in for my second op to remove the right ovary, fallopian tube and appendix as well as have biopsies taken from my omentum.
At my pre-op on Monday, I was told I will have to inject Fragmin daily for 28 days post surgery. I know a lot of people have probably had this so just wanted to ask how you got on with it. I'm only 33 and nervous about another op recovery (as I developed a rather large haematoma after the last one, which set me back a few weeks and i'm only now feeling my normal self!) I'm also nervous because I've been told that these things tend to have a high reoccurrence rate.
My medical team are aware that I have a 3 week trip planned to South Africa on 1st Sept so it will be all systems go on the recovery front. It's giving me something amazing to look forward to after a few months of all this nonsense. I'm just praying all goes to plan on Tues and nothing scuppers my travel plans (as they've been in the diary since Dec last year!)
Jemima x
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I didn't have fragmin, but had clexane which I think does the same job (I also had the sexy dvt stockings). I had 25 days worth. The hardest thing with doing them was knowing you have to stick yourself with a needle and that it's going to hurt! Even though it doesn't hurt much, it's still not easy to force yourself to do it (or maybe I'm a wimp?!). I found getting a nice big pinch of tummy flesh and trying to avoid muscle was the best approach. I also found my tummy skin to be surprisingly tough, and had to jab quite hard.
I truly hope your op goes well and that your recovery is smooth. Not long now until your big trip.
Thanks Yoshbosh - i've heard Fragmin can sting somewhat too! Maybe i'll get my hubby to inject me then i don't have to look! I'm not that fussed about needles (although who really likes them!?), it's more the hassle factor (especially as i might need to travel with them!) Thanks for the advice though, really appreciate it xx
Clexane stings like a bee when it goes in! Nasty stuff. I wanted my hubby to do mine, but he's scared of needles 😂 My 4 year old, on the other hand, was most fascinated by it and would sit *right* beside me so that she could watch the needle going in. It was the highlight of her day!
My hubby did mine two for 28 days. Six o'clock everyday I used to dread it as it really stung. I counted the days down. My hubby did so well I could not have done it if it was the other way round.
Thanks Shelley, I think I'll get my hubby to do it...not looking forward to the stinging! I found that when I was injected with IM Buscopan after 1st op (to help relieve the awful awful gas pain) that sting like nobodies business! Ouchie 😔 X
Ouchiee is a very good description lol. It's much easier if someone else does it I don't think I would have been up to it felt rubbish because of op and the thought of injecting myself horrified me. Good luck with everything and have a fab hols 😍
Hello, I had Fragmin for 28 days. The nurses also give it to you in hospital. I'd recommend watching how they do it. Quickly. I did it too slowly, I think, so I gave myself little bruises, didn't notice stinging though
I expect you'll also be given some hideous socks without toes to help prevent DVT. Do let us know what colour you get. Mine were boring white but some of us have had lurid green. Keep them though for your long haul flight to South Africa, they are much tighter than shop bought ones. Helen
Thanks for the tip to do it quickly Helen. And I was given some of the fetching white DVT socks for my first op, which I've kept for the flight. I'll be getting another pair on Tues & have already been reminded about all the DVT advice for the flight (which I always follow anyway as we have done this trip a number of times now!) x
Hi i was on clexaine for 12 months has i had 2 blood clots in right leg before operation last may i finally was able to stop injections in may this year i was on a high does 110 so had to take some out of syringeeach time as they came in 130's was a pain but i did mine at night mainly so i would remember... always find a spot you aven't already jabbed in as where you do jab yourself i got little lumps and it you do the same spot it hurts i used to swap sides each night balance it out just another pleasure some of us have to do all the best xxx
Thanks for the tip Tracex (although sorry to hear you had to do it for 12 months!!!! Gosh you poor thing!) I can only imagine injecting in the same spot can get painful. The leaflet says the lower tummy or front, tops of thighs. Oh fun & games!! (Not!) xx
I had Fragmin. It wasn't so bad. The nurses at the hospital will go over it with you and watch you while you get the hang of it. It can sting a bit - but only for a few seconds. The key is to cop hold of a chunk of fatty bit on your leg and do it quickly. The needles are very fine and you have a sharps box to dispose of them. I did mine at night before I got into bed and had a nice cup of ginger tea to look forward to.
Recovery works best with total rest and plenty of sleep - there is no secret to that. You are very young which will help the process along a bit. Do very little and keep your eye on the ball - that being the wonderful journey you have planned.
Thank you Debs. Fatty chunk...nice & quick...got it!
Yes, I understand that rest is the key to the recovery. I over did it massively after the first op which I'm sure contributed to some of the complications I encountered but as I'm absolutely determined to get to SA as pain free as possible, I've got extra motivation to recoup sensibly, no matter how boring it gets!
I had fragmin and it did sting. The nurses never made bruises but I'm afraid I did but it's hard to pull the plunger when finger tips feel a bit numb. I made the big mistake once of trying to pull the plunger after I had just used hand cream. What an idiot ...you can imagine the slipping and sliding and resulting bruise. So top tip use dry non greasy hands. I thought of all the brave diabetic childten i have taught who do this all their lives and it humbled me. Good luck you'll be fine x
Thanks Gleedy - avoid hand cream prior to injections! Got it I asked my hubby last night if he'd do the honours and he said he would, so hopefully i can just look away and let him get on with it! Thanks again x
Just don't rub the injection site. I have to admit I was completely irresponsible and only did the injections for 10 days and, luckily (?), I'm still here two years later! I kept wondering how many people actually popped their clogs before they started sending you home with all the injection paraphernalia and also how much money the company that supplies the NHS with those very attractive support stocking thingies makes every year. And don't get me started on 'modesty pants' for colonoscopies! Hope you have a wonderful time in a South Africa. Deb x
Yay! A partner in crime. They never gave me any stockings to go home with (intentional? Oversight? I'll never know). How on earth do you get them on anyway with a socking great scar down your middle?
I was told after the first op to keep the stockings on until i was back to my normal moving about...that lasted about 4-5 days I think in total because they were hot and itchy! But I have kept them for my long haul travels because they are certainly better then the ones I bought just for travelling! Bugger to get on though!
I was told the same! When I had my follow up with the surgeon 3 weeks later, he asked me why I wasn't wearing my dvt socks 🙊 This was when we had that brief spell of hot weather - no way was I wearing those bad boys with my summer dresses!! Mind you, having seen me stroll into the room, he agreed that I probably didn't need them any more.
Haha - yes, it was so warm after my first op they were insufferable! But I got the impression they weren't expecting me to wear them longer than say, a week! I think it's best to listen to your body with these things too
Thanks Deb - yes i've read about not touching/rubbing the injection site after as that can cause bruising. It does baffle the brain somewhat how times must have changed over the recent decades and as you say, how many poor folk needlessly lost their lives because of simple things like blood thinning injections and sexy DVT stockings! I certainly don't take any of it for granted and will happily just knuckle down and get on with what i'm supposed to do! Thanks again x
Lots of good tips already. I've just finished 6 months of fragmin and I can tell you - for the last couple of months I was sick to death of it and found it hard to find a site. 28 days worth will be fine. To avoid bruising ( or limit it at least) don't rub the injection site and move the site around. Your timing to SA is going to be annoying overlapping with the last few days. I can't imagine you're going to want to travel with a large sharps container taking up space. See if you can find a rigid small case which could do the job (specs case?). Some countries have public needle disposal points so you might even be able to offload them there.
Gosh Mac, 6 months! Yowzers! Your poor thing. Yes, I'm going to speak to my gynae onc before/after the op on Tues and just remind her of my travel plans (she does already know) and see what she says. They've given me a card so i can at least travel with the medication/needles. The pre-op nurse said on Monday that she may just prescribe Fragmin for 3 weeks (i.e. so i can stop just before I fly), but who knows. I've been given the sharps box already and it's not too bulky. I guess the trick will be trying to find somewhere to dispose of it out there in the wilderness. Otherwise, i'll just bury it in my suitcase and bring it home with me! Thanks again xx
I had Clexane injections for 30 days, main things are to read your instructions as they will specify an area to inject - mine was around tummy but not less than 2 inches from belly button.
Secondly make sure you grip a bit of skin and try to raise it if that makes sense
Thirdly put injection in place and just go for it confidently . ( I did have some failed attempts and couldn't get the needle in but I just moved it)
Forthly DO NOT touch your injection site afterwards even if it itches or stings as that will make it bruise!
Fifth - you can change the time of your injection by 20 to 30 mins each day if you need to. Mine in hospital were given at 10.30 pm ( much too late for me) so over a few days I moved it to 8 pm.
Sixth and last - Mark up on a piece of paper or your injection box that you have done it!
Thanks Clare - yes i've already read through all the instructions and have been told i'll be given a 'demonstration' whilst in hospital too! Grip and raise...yes, that does make sense. Thanks. I haven't yet been told about the timing of the injections, although i'm sure they'll go through that with me before I leave hospital. I'm thinking 8pm would be better for me too (or around that time) as i remember being really super tired after my last op and i plan to do a lot of sleeping after this one so i give myself the best chance for my trip.
Thanks also re: the tip of marking that i've done the jab...i might even do a count down so i can see when the horrible bee stings are due to end! x
Hi, two weeks ago I had right Ovary removed with tube and omentum. Also 31, married, no kids. They managed it key hole and I'm feeling good. No heavy lifting but I reckon I could manage a holiday in a few weeks! Half way through fragmin for 28 days. First op I only had it for 7 so I questioned it as I find them sore and the consultant said it was necessary following diagnosis as we have an increased chance of clots apparently. It doesn't hurt for long though x
Hi Jen - thank you for taking the time to reply. Everyone has been so lovely here, but i've only come across one other in the same boat as me and at a similar age. I'm sorry you find yourself in the same predicament, but glad you're feeling so bright after your op. Long may that last. I remember how i felt after my first op, so i'm pretty confident i'll be fine for SA...but i know i've got to feel worse before I feel better and that's the difficult bit (knowing it WILL get better!)
I developed a huge hematoma after my first op (I think i just got unlucky tbh as my gynae said he'd not had a patient develop one quite as bad since 2007!) Not too fussed about them injections hurting/stinging...it's more just the faff factor. But needs must I'm a good patient so will do as i'm told!
I hope your recovery continues to be so positive and you're up and about in no time. x
Your welcome! Same, I know one other similar age. I find these pages useful but not having a family means many of the treatments have a far greater impact on me and possible futures. I have another appointment on Monday to discuss results of my last op, fingers crossed for borderline only and no concrete cancer which would result in hysterectomy....
Good luck and hope all goes well! I've been to SA several times, enjoy a well deserved break! X
Yes these pages have been wonderful and i've also done lots of research myself too through helpful links provided by members.
I hope your appointment in Monday goes ok and things remain 'borderline'. Have they mentioned you'd need a full hysterectomy then if further cancer was found? They're assuming mine is currently stage 1a but won't know for sure until after this next op and histology results come back.
Yes, hubby and i have been to SA about 6 times now (we have friends out there) so its like a home from home and probably one of the places i feel most happy in Can't wait! x
Nice! We head down to knysna, recommend it if you in that direction. Yeah I'm a 1c borderline. The consultant said there is little known about borderline so they sometimes treat it as cancer just to be safe. If full cancer is found after my last op then would be hysterectomy and chemo. They are being very thorough which is reassuring but scarey at the same time. X
Heard about Knysna but never been. One for next time perhaps! We nearly bought a place down in Franschhoek last year!
After I had my tumour removed (when they thought it was just a cyst) they tentatively staged it at 1a but said they won't know for sure until after this next op. Like your team, they have told me that not much is known about these borderline mucinous tumours but i feel like i've read anything that's worth reading.
I guess, like you, once this next op is done and histology is back, we'll know exactly what we're dealing with and can go from there. What scares me the most is that these things seem to have quite a high occurrence rate so at some point in the future (who knows when) everything will have to come out, kids or no kids. Sucks x
Sucks for sure! I go through phases of being sad/annoyed/devastated about prospect of no kids and hrt and it's side effects. To feeling like I should be more greatful for finding it early and wanting to be around to reach 35+.
Maybe it's time to book a holiday Jen Something to look forward to after this latest op?
I totally understand what you're saying. Having experienced cancer within the family as well as close friends, I feel almost lucky that, for now anyway, this all seems wholly manageable. It's the kids thing and the future unknown that is the hardest part for me right now...but isn't that the same for everyone? xx
Hi Jemima, I had my first op in February to remove a twisted ovary ... histology revealed an endometriod adenocarcinoma ... now 2 weeks post op having had other ovary and tube, omentum, uterus removed.
I am half way through my stock of fragmin and I am managing to inject it myself. I pinch the flesh on my tummy, alternating sides ... won't lie ... yes it does sting a bit and it's best if you don't look when you put the needle in as the skin is surprisingly tough. But it's all doable ... I am trying to break up this whole experience into individual tasks in the present ... otherwise I get overwhelmed ... one tip - ask the nurse to let your administer under her dIrection your last fragmin before discharge from hospital.
I am sure you will be well enough for your trip. I am already doing short walks only 2 weeks on and definitely getting stronger every day. Kate x
Hi Kate - thanks for your message. Twisted ovary...ouchie...mine was similar due to the size of the tumour (on the scan, it was all sitting above my uterus!) I hope your recovery is going well Kate and you start to feel better soon.
Thanks for the tip - assuming i'm feeling up to it, i'll definitely ask to administer the first jab myself whilst in hospital. I remember how awful i felt the first night in hospital and just before discharge the following evening, so i'm not sure i'd be able to concentrate on it all properly (that's what hubby is for!!) but i'll give it a go.
Glad to hear you're feeling stronger every day. Long may that last. Get outside in the garden and enjoy some of this lovely sunshine we're getting too x
I had clexane which stings, I let hubby do it, he hit a blood vessel and the bruise is still there since December lol. Are they happy with you flying post op? I was told no flying for six weeks but it could have been because it was quite a big operation. Wishing you the best of luck with the operation, will look out for your update.
Thanks for your message LA - both my first gynae & my new gynae oncologist are aware of my travel plans. Unless there are any complications with this next op they can't see a reason for me not to go. It'll be keyhole again (hopefully) so keeping everything crossed and will follow any after care I'm given to the book to ensure I give myself every possible chance to recover well! 👍🏻 x
Good luck for Tuesday and hope you've plenty of lovely distractions planned for the weekend? The best advice I can suggest is once in hospital, be a good patient and heed all the advice given! It's sometimes tricky to balance doing enough with not too much but definitely worth it.... I took the view that I needed to take the best care of me in order that the medical professionals could do their job. Your trip sounds really fabulous- you may find for a very short while though that just concentrating on the present useful.... one step at a time eh? Wishing you hope & strength Sx
Thanks S - this weekend will mainly be spent cleaning the house from top to bottom and washing all the sheets and towels as well as enjoying some time in the garden...one thing i felt like doing before the last op was 'feathering' my nest so it was all squeaky clean and tidy for my recovery. I feel the same this time round. My husband is a legend and would do it all, but it makes me feel useful (particularly when I know i won't be up to much for a few weeks after). I also plan to go see 'Finding Dory' maybe on Monday afternoon...i'm such a kid!
And yes, I intend to be another good patient like last time. One step at a time as you say. Thanks again xx
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Decisions - huge op or not 😨
26 year old looking for advice and support 
HRT
Clear Cell Ovarian Cancer
