I can see there haven't been any posts in this part of the forum for a while and it's made me a little reluctant to post but I'm hoping there'll be someone out there with a similar experience. I was diagnosed with CC mid Feb this year (adenocarcinoma, 1b1) and had a radical hysterectomy plus lymph node removal on 31st March. I was offered fertility preservation (harvesting and freezing eggs) but as there was no guarantee I would still be able to have surgery immediately afterwards (COVID 19) I decided to go ahead with surgery and had ovarian transposition at the same time.
I've been given the all clear, as the histology showed now sign of residual disease - which I'm obviously really glad about.
What I'm struggling with is finding anyone who has had a similar experience. I have no children, came out of a long term relationship 2 years ago (not my decision) with someone I thought I was going to spend the rest of my life with and have a family with. I'm currently single and would have liked to have had my own children (to know what it feels like to have a child grow inside you). I have no idea how I'll broach this subject with any future dates etc or when I'll even get back to dating. Needless to say the operation and everything around it has left me feeling far from desirable.
I'm not looking for someone in the exact same position, just someone who didn't get to have children pre treatment, really wanted to and is also struggling with all the implications. Every post I come across involves people who have already had a child / children and I'm struggling to relate.
Thanks in advance.
I'm not quite in the same boat as you, I've just been diagnosed with 1b1 and given a choice of RH or trachelectomy. My surgeon has been clear that my best chance at being disease free is the RH. That's likely what I'm going to do as I have a stronger urge to live healthily than to take any risks.
I'm 36 and recently married, was looking forward to trying to start a family soon. So I'm feeling totally blown away at having this cancer and this surgery and how everything has turned upside down so quickly. Many of my friends have babies and I feel really sad I will not get to experience this. I never had a pregnancy at all before all of this so it's a whole side of life I feel is now shutting the door on me.
Right now my motive is to survive and to live and I'm trying to pack my baby blues in a box to deal with after. It's a lot to take on all at once. So I can understand that now youve had your all clear, thank goodness, you've got a bit more headspace to think about the implications of what you've been through.
Sorry I dont have more insight, as I'm behind you on this road, but wanted to reach out all the same x
Hey, thank you for reaching out and sharing where you're at. I had a similar conversation with my consultant re what was the best chance of remaining cancer free and opted for the RH as again I just wanted to focus on the best chance of not having cancer.
I think you're right, now I've got a bit of headspace more things are processing. I'm currently having quite angry dreams and feel irritable - just trying to let it be rather than not feel it if you know what I mean. I think the baby related feelings are largely in a box for me too. Just like after being diagnosed and seeing cancer related things everywhere, I now seem to me a magnet for all baby, pregnancy and mother related things. I'm sure that's not true its just I'm noticing it so much more.
I hope you have some good support around you? I've had my mum stay with me through the op and she's still here, it's made a big difference. My physical recovery has gone well but it did take me by surprise how easily tired I became and just how little I was (and am) allowed to lift.
That's interesting that your consultant gave you a similar choice, and that you decided to put your own health before fertility, in the same way I will. It's a really horrible choice to have to make and one of the cruellest things that cancer takes away from you. In my case, I have reflected that trying to have a baby after trach could be less than straightforward- I am already 36, and with potential risks of scarring, stenosis, miscarriage, pre term labour, I think it could be a fraught and traumatic experience. As if cancer wasnt hard enough ;-)
I am constantly seeing adverts on tv for Rutherford cancer clinics or aptamil baby milk!! I'm early days and still sad/shocked, but I've felt the beginnings of "this is crap! Why me!". The whole situation we are in is unfair, not our fault, and seemingly random, I see other people walking about oblivious to how a thunderbolt can strike a person out of the blue like this, and I envy their innocence. I have stepped back from work because I am impatient and intolerant at the moment, I am usually very easy going, and I dont want people to watch/gossip about how I'm adjusting.
That's so lovely that your mum is there to help you! My parents are shielding so I'm not allowed to see them. This is crap too. Thank heavens my husband is here and is actually quite practical around the house with cooking and cleaning etc, he will be able to step up when I'm in recovery.
I had an unexpected grief in my 20s and I am imagining that when I unpack my baby blues it's going to go along the same way. Back then I spent a long time, months and months, looking for rationalisation, trying to make sense of what happened, and tormenting myself with "why?". Eventually I was able to move past trying to figure out why, and then I became less cross about what happened, then for want of a better phrase I got used to it, and it stopped taking up so much of my headspace all the time. Other challenges and experiences started to fill the time that I had spent on ruminating and grieving. There was no magic formula for how I got through that loss, and I dont think I'll have one for this either. But it does give me the hope that things do get less raw.
Hopefully someone with more experience of this will be along soon and give us both some pointers xx
Hi girls, I'm 9 months post treatment, I was 33 now 34 haven't had children either. I did the whole egg preservation before my treatment started,but it was so rushed that they were only able to get 2 eggs. My doctor says the chance of them turning into embryos is very slim and there's the whole I would need a surrogate thing too. A lot of times I try not to think about it and sometimes feel like a little in denial. and seems like so many people I knew got pregnant last year and had baby girls , which for some reason triggers me more because I always wanted to have a daughter. Sometimes I beat myself up at why did I wait so long why didn't I just have a kid when I was younger. I think I was just waiting for things to be perfect in my life, which I know now is unrealistic. You girls are in the beginning stages so it's a lot to take in and very sad and stressful. I don't think the sadness will ever truly go away for us but I'm sure in time it will get a little easier. Since both of you are having hysterectomies and keep your ovaries if you choose to you will still be able to retrieve eggs from them after and have them frozen or used with a surrogate just as long as there was no radiation involved.
Thanks for sharing your experience with us x
I recognise so much in what you've said. I always felt I would have a daughter too. And my husband is so good with kids and really wanted to have one early on when we first got together and I put all these obstacles in place, need to get to a certain point in my career, need to travel, need a car, need to get married, need to save up, all these checkpoints I thought were important and the whole time taking my health - my future - for granted. I'm sure lots of women do this. I still havent achieved all of these checkpoints so I'd like to stay in denial a while longer and then write my infertility off as being just too old. For some reason I feel like that is easier to accept than it being a consequence of my treatment.
Hope we will all find a way to make peace with it x
So much resonates for me too. I've been really irritable the last fews days and having dreams I which I'm really angry. I can't reason with the world carrying on as it was (minus COVID 19 obvs) and my whole world having changed. I find it so hard to part into worlds, everything just feels different and I've no idea how to come to terms with any of it. It's so easy to pretend everything's OK and then I remember.
I've been off work for just over a month now and am signed off until the end of May with a suggestion of a phased return. I thought I was ready to go back soon but then I backtracked and felt totally overwhelmed at the idea of being people's line manager and having to do 'professional'.
Time is a great thing, I know and I guess it gets easier but boy do I want to get to that bit. I don't feel I can engage with much. No magic formula, ain't that the truth.
Thank you so much for responding, it's helped so much to know I'm not alone xx
Feeling the fear, I totally relate to everything you just said. Try not to stress to much, I know easier said than done. Good luck with your surgery and I wish you a speedy recovery on which ever surgery you choose to do. I remember before my scan results came back and I knew how bad my cancer was my dr told me to look into those options, and I still don’t know which one I would have chose. I feel like that’s a lot of pressure they put on you to decide for yourself between a trachelectomy and hysterectomy. It adds a lot more stress to someone who’s already stressed. Be kind to yourself and I wish you well
Emma, I wish you a well recovery too, and who knows maybe work might help you take your mind off things and give u a since of normalcy.
Hello again ladies,
Emma, I'm a line manager too and I totally understand how you feel about having to slot neatly back into your old life and deal with all the employees nonsense moaning about the coffee machine isnt working or it's not fair I dont want to work a bank holiday or why cant I have 6weeks off to go on a bread making course! I dont know if or when I can be that upbeat, diplomatic person that I was before. But I dont get much paid sick leave so I need to get back to it as soon as i can after my surgery, I guess gotta fake it til I make it!
Rissag, I wish I was given the option to have the lymph node dissection before the op as you did, I have this dread that I'll have the ordeal of RH and then find something in the lymph and end up enduring more treatment on a body that has already been through a major surgery. And then all this soul searching will be for nothing as my treatment options will be rather more limited. When I spoke to my GP yesterday, hes an old school guy about 60odd, he said "in my day surgeons just told patients what was going to be done and they could take it or leave it, nowadays it's all about "shared decision making" (his tone of voice dripping in sarcasm) ....from that I started to think that really my situation is being dressed up as a choice but the only valid/"sensible" option is the one that the surgeon is recommending, and they just come up with a 2nd choice because that is now the protocol.
This gave me a shred of comfort in a strange way because you cant regret a choice you make, when in all honesty you really had no other option.
I keep thinking to myself, nobody in life gets it all, and I am looking for the blessings I've had that I can cherish and make the most of, for my post treatment life. One of those things is I love to travel so I'm pretty pissed off at covid right now LOL
Sending hugs to you both x
Just an update really as I am now 7 days post surgery for my radical hysterectomy. There is some stuff in this post which is TRIGGERING so do be warned before proceeding xxx
The day after surgery, my surgeon came to see me with a glossy a4 print out of my reproductive organs on a piece of blue surgical draping, with the scalpel in view on the corner of the shot. That was a very.... surreal experience, and he left the photo with me for me to keep! The nurse told me this is standard procedure legally for him to show me that he performed the surgery as consented or something.
It was the most disturbing sight. I did keep the paper as otherwise it would have been sent to the shredder and although it is only a photograph I felt a bit sentimental about it being shredded, much like the actual thing will be at the pathology lab. I havent looked at the paper since but I can picture it exactly in my mind. Really not sure on the psychological wisdom of him doing this so soon after the op, even if it is the legal process.
So this morning I awoke from a dream in which I was in my workplace and there was a mum with a baby girl around 18mth in a pushchair. The mum kissed the girl and she smiled widely. She was beautiful. In my dream I started crying, publicly, in front of my staff. The mum looked at me in horror and disgust as if I were a baby snatcher or a lunatic. I woke up very sad. I had been telling myself I cant think about fertility until the cancer is gone and I guess my brain decided it is time.
Coming home from hospital there are bits and Bobs around the house I've chosen to hastily and unceremoniously get rid of, example all the leftover contraceptives, pregnancy tests, mooncup, tampons, heat patches for period pain. Who knew a uterus came with so much paraphernalia? I have sanitary towels too but kept them in case I get a bleed later on in my recovery from surgery. I've got feminax tablets which I started taking instead of the hospital issued ibuprofen as its stronger, and the irony wasnt lost on me that I'm taking period pain pills for my hysterectomy pain.
I know I am overthinking things. And giving emotional significance to things that are really just "things".
No real answers or conclusions to this post, just writing stuff down because it helps. Thanks ladies xXx all the best to you xXx
I am pending investigations having been offered a hysteroscope that got cancelled last year and though I can't relate to having had cancer myself, my dad and grandad did, i can relate to having had difficut health challenges as I was declared disabled last year. I have EDS which is genetic. I come from a single family background and knew did not want to go down that route but recall when i was initially diagnosed i went into looking into freezong eggs and all that IVF stuff and came to the conclusion that short of £25k the pressure it would create would far outweigh, in my case, risk and benefit. I remcally having two sessions with a genetic counsellor who likened the decision to have a child to that of the referendum for Brexit, i.e there are strong views either side but that the people who were ambivalent or undecided usually felt the negative consequences of their decision more, i.e if you are on the fence go down a certain path and it fails ou tend to feel it more, but this is an actual psychological phenomena that is seen in many decision making areas. In my case am so tired/sick dating isnt possible and so my circumstances may be different to those that are in relationships but this doesn't make the loss of expectation any easier. I think that its natural to feel sadness but then all is not lost, think of how many children in the world need parents and adopting? Donor eggs is another one, but ultimately you can be both depressed and grateful at the same time, having a cancer scare and surving it even with life altering side efffects still means you are ALIVE. and if Covid is anything to go by we are lucky to be so. I hope that people find comfort in whatever way helps them through this, i have friends who have kids and some you don't but chose not to...at the end of the day sometimes you have to let go of control and hope for the wisdom to ensue, all the best
I'm due to have a RH tomorrow after being diagnosed in October. I was feeling fine about it until this evening when a wave of grief has hit me. This thread has provided comfort to know I'm not alone so thankyou. I've avoided the Jo's Trust forum because I couldn't face it yet but I'm finally here having finally faced my emotions. I'm single, in my 30s and do not have children. Thankfully my surgeon will preserve my ovaries. Lymph node dissection a few weeks ago show no spread so I want them to stay. Children were never on my radar, but having that decision taken away is devastating.
"You can be depressed and grateful" is spot on. I'm sick of people saying to keep my chin up.
I wish you all the best, we're in this together.
I've only just seen your post; how are you doing and how was your surgery? These first few days after are a blur of pain and pain relief if I recall rightly. You are certainly not alone when you come to the forum. Let us know how you're doing when you feel up to it xx
Hi Emma surgery was a success and I'm feeling OK, I was lucky to be in a room with a lady in a similar situation and we bonded. I was actually sad to leave her. It was nice to talk to someone who really understood. I'm so glad to be home though and actually be able to get some sleep. The pain is being managed well but oh my god the trapped gas! Oweee no one prepare you for that!
Haha, no they certainly don't - or the first time going for a number 2. It took me a week and was more painful than everything else.
Glad to hear your surgery went well and you found support - this makes such a difference.