sorry about my lengthy note here… please bear with me…
following early life traumas I avoided smears until 2014… when I had symptoms I couldn’t ignore. Finally I was diagnosed with cervical cancer. I couldn’t believe how intrusive people were when they asked me where my cancer was, when was my last smear, did I have HPV… I eventually learnt only to disclose what I felt comfortable talking about, but I felt judged, dirty, blamed… and from my past experiences I was already so uncomfortable with the intrusion of check ups etc… Even the words pap smear still make me cringe and I can’t tell you how excruciating it was for me to get through brachy and the indignity and fear that came with the whole ordeal. As much as everyone thought I was ‘really strong’ through treatment, when I remember lying down with legs akimbo and 15 people in the room looking at my nakedness, I still cry. I have to just stop thinking about it.
anyway… my point now, is that I’m trying to be assertive but sensible. I finished treatment in Sept 2014 and am having annual appointments with an oncologist. I can just get through her examinations because I’ve learnt to trust her, but she doesn’t seem to do any ‘smear’ so I wonder why she insists on these check ups anyway? It doesn’t seem to be about detecting whether the cancer is coming back, so what are they for?
I was going to ask her at my next appointment, but it has just been rescheduled with a man… that in itself is going to be a huge challenge for me, and I might not be able to do more than allow him to talk to me.
Does anyone know what the purpose of the follow ups are? If it’s just about monitoring scar tissue etc then I don’t need that checked. If it’s about detecting cancer returning then I’ll force myself to go, I think…
sorry for the heavy content… this is my first reach out and I’ve been really moved by what I’ve read so far from you amazing ladies xx
I have every sympathy for you regarding the trauma you feel for the smears i can only imagine your anxiety
I have anxiety attacks regarding needles I have no idea how I've managed to get through 2 rounds of chemo but I did same as you got through your treatment
i gather from your notes that you don't have scans anymore so I would think that the annual internal smears will be to check for any cancer I do know that when they do the smears they also look to check everything is ok a question I would be asking at your next appointment
also if the next one is a guy you have every right to ask if a woman can do it
hope you get through your next check up and everything is still ok
im sorry that you are experiencing such anxiety and feel that you are or was being judged in anyway that makes you feel that you are to blame or dirty from having cervical cancer because of past traumas in your life. That is not the case and anyone who will judge you in such a way is clearly not educated about HPV or any cancer regardless of where it is or how it came about.
You do sound like a strong person but I get the impression that maybe you are suffering from PTSD and every follow up appointment brings these feeling back to the surface. I can tell you have tried to deal and have managed very well getting through treatment but now you seem to be worn out and are having a hard time to continue to battle your inner demons.
Have you ever concidered working these fears through and finally laying them to rest by seeking counselling? I cannot imagine you would want to live the rest of your life with these fears constantly sleeping below the surface just waiting to pop up and continuing to haunt you.
Talk to your dr and demand a female dr for exams but do concider trying to finally face these underlying issues from the past. If you were strong enough to make it through cancer then you should be able to manage facing some things you have buried for quite some time.
I do hope you continue to be as strong as you have been and can find the strength to finally lay some demons to rest.
Hi Danb I know what you mean about the embarrassment when saying cervical cancer. I just say gynaecological. It's nice and general and doesn't invite questions about hpv and other invasive prying. The checkups are about finding recurrence. You're a few years down the track now so they'll probably stop in a couple of years. Sorry you have to endure this. Jayne
Hello DanB. I'm not sure if you are in the UK and so whether you are able to access the same support, but my hospital has a dedicated team of gynae cancer nurses who are great at answering questions and arranging things. My nurses all happen to be female, which I realise might not always be the case, but do you have access to anyone like that? You could then explain to them exactly as you have to us and they could liaise with your team to make sure you understand why you're having the checks, plus arrange a female to do them. Alternatively are you near a Macmillan centre or a Maggies centre? Both are excellent at offering support - not just on the treatment or medical stuff, but on all the additional emotional things that crop up or raise their heads while we go through this. Best wishes.
Thanks Michelle, it's really reassuring to hear someone confirm that it's ok to ask for a female staff member... I have asked repeatedly in the past and when I last was asked to see a male gynae I just sobbed in front of him. maybe they haven't written anything in my notes so the computer just churns out appointments without considering my requests. your post makes me feel more confident to politely assert myself, so thank you very very much.
so sorry to hear about your needle anxiety. i know from my own treatment that it's a demanding regime of blood tests and potentially transfusions and white blood cell injections... Luckily for me needles didn't worry me. I hope you get through all your needle experiences and recover well from everything
thanks again for your listening and reassurance xx
Thank you- I think you are right and maybe now that my treatment is history I should find the time and strength to finally deal with this. its really reassuring to hear others confirm that its ok to ask for female staff, and I'll do that, but I will also take your advice and seek counselling. I do like the Buddhist ideas about karma and feel that I've never really dealt with my past, and that having cervical cancer forced me to face it on one level, but maybe the time is right to get more emotional control of it. Thank you. I guess I knew this, but it's really comforting and normalising to hear it from others.
I hPope your own experience of cancer is tolerable and that you feel healthy and happy. Thanks so much for listening xx
Ha ha, I'd never heard of the treatment trifecta! I love your positivity and so glad it has worked for you.
like you I've found language that stops prying. unfortunately my idiot dad put on Facebook, yep, I'm not joking, that I had cervical cancer.... and it took weeks for him to take it down Because he didn't know how To... And since loads of family members have had breast cancer, the questions then went round, publically, Oooh, is it related to that, oh no... it was pointed out to everyone on his FB post that cervical cancer is virtually an STD and it must have been my fault for being promiscuous! Anyway, that's all history that I can't undo... One day I'll write a book about it... I'm sure it would be hilarious if not so tragic!
Thank you Jayne, your reply has given me a laugh, and I appreciate your caring and listening xx
thank you, I am in the UK and I hadnt heard of a Maggies Centre until I joined this forum a few days ago. Thank you so much I'll go and look for one now.
My nurses were fabulous and held my hand while I cried through examinations, but now my treatment is over (for now, and fingers crossed, forever), I'm not seeing those ladies anymore. I am really reassured though by everyone else on this forum saying it's ok to keep asking for a female nurse, so I'll continue to do that and not put myself through unnecessary trauma.
I'll look up Maggies and see if I can access one, thank so much for the advice and the listening, very much appreciated. I already feel so much less alone in my private battle. In my little bubble I felt like I was alone in having cervical cancer and going through these intrusions. This forum is so helpful, thank you all xxx
I could pretty much have written your post myself. I also avoided my smear like the plague for the exact same reasons. All of the ladies have made some good suggestions.
I had quite a good GP who recognised that I wouldn't book a smear if she let me walk out of her room and so prescribed me diazepam. If you haven't tried it I would recommend speaking to your GP. I still cry my eyes out gripping my CNS's arm but it takes away that feeling of sheer panic and fear.
Thank you PrincessG, ive felt like a freak for so long, thinking (irrationally, I know!) that I'm the only person on the planet this traumatised by smears. I could barely say the word out loud! Thank you so much for your advice... I had never thought of trying diazepam, and it might help me get through what I can only imagine is going to be years of intrusion.... But I guess, at least it's years eh? Years that I'm here for... So going to love life and find a way through this. Thanks so much. I hope all is going well for you and you're getting through your own tough times. xxx
