I've not posted since they changed the forums as I feel a bit of an 'inbetweener' as in I'm past the colposcopy stage but having had 1A1 removed by LLETZ I feel a bit of a fraud being in the 'CC stage' as although I had CC it was unknown to me as it was so tiny and was successfully removed. Having said this because it was diagnosed in the biopsy I am treated by the hospital as having had CC and therefore require a 6 month check up at the colp clinic rather than going to the doctors for a smear.
I'm sorry if this post sounds strange to people and maybe ungrateful but it's hard to talk about the issues I feel with people I know and I would like to see if anyone on here is in the same situation. I've got my 1st 6 month check up on Tuesday and I have to say I can't wait. It seems I've been waiting for the 6 months to go by since I had my 2nd LLETZ and not a day has gone by where I haven't worried about whats going on inside me. I'm very lucky to have 2 children and although I know deep down that my family is complete there has always been a part of me that has said 'never say never'. For this reason when I was asked at my very first appointment about my family I did say that I wanted to save my fertility if I could. Now I'm due my check up I suppose I may need to re-assess this.
I've had a feeling since this all started that it wouldn't be the end for me and in the past week or 2 I have started spottting and getting the odd shooting pain in my cervix- of course this may all be in my head because I know my check up is due etc but you can't help but worry. 6 months down the line I have sold most of my baby stuff so I know that that part of my life is complete. However, the thought of anything permanent being done to my body freaks me out. I'm so grateful for my children and I know some women are not as lucky as me, I also know that I do not want anymore children yet I'm still scared about having to potentially make a decision that will be permanent.
Now this is the part that is hard to write as it sounds so wrong however I try and word it... My biggest fear is having cancer that will take me away from my family. My 2nd biggest fear is living with the fear that every 6 months or 1 year that I will keep developing cells that may turn into cancer. I have lived since March with the constant worry and it drives me crazy. As my diagnosis wasnt life threatening there was never the need for surgery as a cure, only preventative measures which I had. I feel in limbo now as part of me would just like everything taking out so I don't have to deal with another 6 months of constant worry, yet the other part of me would obviously hate this. I am really struggling here how to word this as I know what I want to say but I can't get it out properly.
I guess I just want my old life back where I didn't worry about cancer and thought it happened to other people. I want the option that maybe in a year or 2 there may be a 'surprise baby'. Or I want it taking out my hands where they tell me I 'really should have surgery' to prevent a reaccurence. All I know is that if my results from Tuesday are 'normal' that I still wont rest, maybe for another 6 months or maybe for a year I won't believe it. I think part of me will always wait for it to come back.
God I'm sorry I've just seen I've written a total essay of waffle! Please someone tell me that they know how I feel? Thanks for reading and I'm sorry if I've offended anyone or come across as ungrateful. I know I am very lucky compared to lots of you and I'd hate to upset anyone xxx
I have to say I know exactly how you feel, to be honest you have described exactly what is going on in my head. I had two LLETZ and lymph node removal for stage 1b1 CC but I am forever wondering if I should go for a hystorectomy to be sure. Right now I am 21 weeks pregnant so can’t be monitored at the moment so I worry its back and I don’t know. Like you I am so grateful for what iv got and know I am so fortunate to have the opportunity I do at the moment. At the same time I get frustrated at myself for worrying when I should just be getting on with my life and taking each day/appointment as it comes.
I think only you can make the choice on what the next stage is for you. I hope you have a nice consultant who you feel comfortable with. Get a list of questions written down, trust me you will forget the minute you walk in otherwise. Sometimes a good talk through can really put your mind at ease. I do also find in the lead up to appointments I become much more sensitive to any little twinge in my body.
Best of luck with your appointment let us know how you get on x
Hi Newbie, you shouldn't feel bad about posting your fears and worries. I think getting that first results letter is a life changing experience no matter what the outcome is. It has changed my perspective on life and health (and I "just" have CIN3 - it still utterly petrifies me). I just wanted to pass on some advice that my lovely mum gave me when I kept getting upset and bemoaning that I wanted go back to the old life of not worrying about my health. You cannot go back and change the past and there is no point worrying over what might happen in the future as you do not know what is going to happen. It is literally a waste of time and emotions to dwell on these things and will not get you anywhere. All you can do is focus on the here and now - enjoy it and make the most of it!! If you live life to the best that you can now, that's all you can do to create a good future. If you stay mentally strong and try to fight off those negative thoughts, you should be able to take on whatever the future holds for you. Apologies if this sounds like mumbo jumbo but it really helped me! I hope you can take something from it. Good luck with your check up - please let us know how it goes. xx
I just wanted to reassure you that whatever the stage a cancer diagnosis is a very scary and life-changing experience. Cancer is cancer and you shouldn't feel a fraud or uncomfortable that you were detected at an early stage and the cancer removed. Your feelings are natural in the circumstances and having a young family myself I understand the anxiety that a diagnosis brings and the excrutiating fear of potentially having to leave children behind.
I really hope your appointment goes well. Raise the pains and symptoms you are experiencing so they can investigate them thoroughly. But the good thing is that you are now being regularly monitored which should hopefully give you some reassurance for the future.
I had a radical hysterectomy, lymph and ovary removal in Sept and it has given me some peace of mind. I'm relieved I won't have to go through regular smears and be constantly worrying about the results and whether the cervical cancer has returned. I now know that I can never get cervical cancer again or even womb or ovarian cancer but I am having to look on the positive side of a bad situation. Time will tell whether I start to worry about a recurrence elsewhere and I'm sure I will still get anxious ahead of checkups. The surgery was not an option for me but a necessity and I'm not sure I would not have chosen that course if other options were open to me. It has not been an easy path. Bear in mind that the surgery is tough - it will be a while before I am back to normal (if I ever will be) and it is difficult to come to terms with the loss of your fertility even if your family is complete. Remember that any surgery has risks too. I think whatever path you end up taking will have good and bad points and it is a case of dealing with them as best you can. You will be amazed at how resilient you can be in difficult circumstances and probably already have!
Your consultant should help recommend and guide you in the right direction. I would suggest you have a good chat and discuss your concerns with your oncology nurse too to address the emotional side. It may be that you could have some counselling to help with your fears - something that I am definitely thinking of investigating in the future.
I have a friend who had treatment for breast cancer and she told me that over time her worries although not gone have faded a lot. I am optimistic that will be the case for many of us too :)
Thanks so much for your replies and your advice I'm very grateful and relieved also that others can sympathise/empathise and just understand what I'm trying to say. I'm not one generally to make a fuss about things so I find I've sort of bottled all of this up and played it down to everyone. I'm the girl that had a c section and was crawling around 2 weeks later in a soft play area with my eldest- I have always just 'got on with things'.
The other thing that is in the back of my mind is that there is history in my family. I never met my Grandmother on my mother's side as she died of cancer of the womb when my mother was only 18- my mother had a hysterectomy at age 40 due to seriously heavy periods so of course there is no way of knowing if she also would have developed it at a later date. I had a clear smear only 3 years previously to my abnormal result so it scares me how quickly these things can develop.
Anyway, Toca congratulations on your pregnancy and I hope everything goes well for you. I know it must be hard not to worry but please try to relax. Pregnancy is such a special time and having had a troublesome 2nd pregnancy I would give anything to experience my 1st again. Thanks for your message it was so nice to hear that someone got how I felt and felt the same (obviously terrible that you are in this situation though) Hope this hasn't come across all wrong?
Kirsty- well done for getting through your surgery, I can't imagine how hard it must be. When did you have the RH? Sorry just seen your signature so seen it was in September- how are things physically? I imagine the emotional healing must take a lot longer but like you say you must look on the postive of this horrible situation and try and take peace of mind from it (so easy for me to say all this of course!)
I have to say I am not normally a 'what if' kind of person as I think it's pointless in worrying about things that didn't happen but I can't help worrying about the future and my family. Thanks again ladies, I will let you know how my appointment goes and best of luck to all of you x x x
I'm doing well since my surgery thanks and go back to work tomorrow. I'm improving continually both physically and emotionally. I am still very tired but looking forward now to the future with my two girls.
I have a family history too. My grandmother died of cervical cancer when my dad was 7 (the same age as my daughter now). Cervical cancer is not meant to be hereditary but it does make you wonder whether there is something as well as HPV that makes you more susceptible. This upset me when family told me soon after my diagnosis. However, I have accepted that times have changed so much now. Cervical screening, better diagnosis and treatment have made such a difference and cancer is so much more curable nowdays. I am so pleased my girls with have the HPV vaccination in the future and they won't have to go through the same experience. I've only been to my grandmother's grave a handful of times. Given my personal situation and what I've been through I plan to go and visit with some flowers later this week and spend some quiet time there...
Good luck with your appointment - hope it goes well and you get some reassurance.
Pleased to hear you are on the mend, and best of luck for work tomorrow. How long did you have off work in the end?
I have been really busy tonight so haven't had much time to dwell on tomorrow but as my appointment isn't until late afternoon then I imagine I will have a stressful morning. I intend to go in with the 'be honest with me attitude' as I am the sort of person who prefers to be told if there might be a problem (even though I know they can't say without lab results) and I was so niave after my first colposcopy and was like 'see you in 6 months' as I honestly didn't think it was anything to worry about. So this time round before I've even stripped to the waist I'll be demanding to be told what they can see! haha
BTW with the follow up does anyone know if they just do a smear or as it's at the colp clinic in the hospital will they go ahead and put the solution on etc??
Thanks for your thoughts Kirsty and good luck yourself tomorrow xx
