Possibly triggering?

Hello B74

I am so proud of you that you have taken a very difficult step to express yourself on here. 

There are no apologies needed. This is one of the reasons I suggested The Room. It is a place where it is safe to share and I hope that you feel a bit better for writing it all down. I can see that you have had some very challenging times before the endometrial cancer diagnosis and I can see why these are making the diagnosis even more challenging. 

I hope that you are still having support from your therapist. It must have been really hard to have a diagnosis of a gynaecological cancer so soon after making the break throughs with your therapist and beginning to have hope for the future. 

What I can say from my experience having endometrial cancer last year was that all examinations were done by a nurse team and there was always one that acted as a chaperone. I had one examination at diagnosis and then I had no internal examination until right at the end of treatment- 6 months later. This was done to check on healing, a very narrow speculum was used and a quick internal that took around 5 seconds in total. I was only given this examination because I had 5 weeks of radiotherapy. Otherwise after surgery it would have just been checking my tummy wounds at 6 weeks. 

I can understand about the follow up checks. That is what I am currently on. I go every 12 weeks. But not everyone does. Some people do not have follow up checks. Some people have phone consultations. It all depends on what stage and grade it is. My checks are with the same 2 nurses each time and I feel I know them well and trust them. There is no embarrassment or anything I do not feel I can say to them. 

The checks are literally a chat for about 10 minutes- how is life going sort of thing, is anything worrying you etc. Then it is a very quick look with the speculum- quicker than a cervical screen and no pain. 

For anyone who has had the trauma you have experienced such examinations/check ups etc will of course feel more challenging but if at some point, without going into any details that make you uncomfortable- or just by saying that you have had some bad experiences the nurses will really look after you and make sure that you feel in total control at all times. 

Also another thing to remember is that you have to give consent for anything to happen, and sometimes knowing that can make you feel a bit more in control. 

I think at the moment everything is all so overwhelming and that to try to break it down a bit and maybe try to focus first on the surgery- and then take it from there. I do understand what you are saying though that it is not the cancer that is frightening you so much but that you are having to keep fighting after doing so for so long and that it is the vulnerability and lack of independence. That is why I have spoken about the control. 

I hope it has helped to write it all down and please do use the room as much as you need. 

If there is anything else you need you know where we are.

Jane

Thank you for.replying. 

I was told at my pre-op on Tuesday by the sister doing it that she will do a "gynae check" 6-8 weeks post surgery . I haven't had a smear since around 2012 for this reason. I stopped seeing the therapist after the transvaginal scan that identified the polyp in June as it spun me back into a numb state and I lost track of my new found connection with myself and then all this happened. I went to see her yesterday to try to process some stuff and was able to get in touch with my real self and the rawness and came closer to tears than I have ever been in the presence of another, but even then my defences stopped me. I was able to express and explore my despair but unable to see what I might need. I can bully myself into facing the gynae investigations but this has a very profound and negative impact on my well being, I can write as this keeps it as a narrative that doesn't connect to me emotionally as I can do it from the position of a detached observer, but if I were to show these posts to anyone who knew me I would feel shame and humiliation and not be able to face them which is why I am struggling with the CNSs. My place of despair is so familiar to me but a scary place to go

I get that it is easier to write it down as a sort of narrative and that you can sort of do it as an observer. I found it far easier myself to write in this way. 

You have nothing to feel shame or humiliation about. You have done nothing wrong. Something awful has happened to you in the past and it is naturally affecting you at time when you have had a cancer diagnosis. Having the diagnosis of cancer alone is a massive thing.

I am pleased you went to the therapist yesterday. You say you came close to tears. Someone said to me last year- tears are not a sign of weakness- they are an expression of emotions. There is nothing wrong with crying in front of another and I found that it could be a cathartic experience- and I have in no way had to deal with what you are going through.

You said that you were able to express your despair but not yet see what you need. Perhaps this is the next stage in the process and it is something that the therapist will be able to support with. 

I understand why you feel it is so difficult to speak with your CNS about any of this. I also get that you have learnt over the years to dissociate the inescapable. Am trying to think of something to suggest that may help, so forgive me if I do get it completely wrong- would you feel able to say just this to the CNS- that you have CPTSD and finding this all very triggering- and that you need more time and support and control during any examinations/appointments. That you prefer a female (if this is the case).

You can keep all this to yourself and keep it between you and your therapist- no one else needs to know- if that is what you want- but I know that the nurses would be able to make things feel slightly less triggering if they knew slightly more of what has happened. To feel you are bullying yourself into these appointments, it just feels like it is adding even more pressure on you. 

What does your therapist think? If the CNS was aware could they make sure you had the same nurse each time, an experienced nurse, one that would talk you through every step and give you time and explain exactly what they are doing and why. To put some control back to you. 

What do you think would help you through this? Is there something specific that could make it feel any easier? Or do you prefer to continue exploring it all with the therapist you know and not yet share with anyone else. Am just thinking out loud really. 

I do get what you are saying though- writing it down and enables you to almost step back from it and detach from it. 

Jane 

Unfortunately I won't be able to see my therapist again until I can drive. 

I feel like I am impossible to help as people knowing anything makes the risk of vulnerability heightened so for medical stuff I would rather no talking in order to escape in my head, having the same person almost seems scarier. I think I might have to just decline further check ups

Would the therapist be able to offer a phone appointment/zoom appointment for the 6 weeks after the surgery. Just a thought. 

You are not impossible to help but I do get that for the medical stuff you prefer not to talk about it . And that is always your choice. You know you the best and what makes you feel more in control. 

I suppose having the same person in a way is that harder because they get to know you better? Was just trying to think of ways to make it feel more manageable.

Further check ups are always your choice and it is your right to decide what you want to happen. Maybe they would offer you less check ups. Or a phone check up.  Maybe an alternative would be to agree to a sort of patient led follow up- where they tell you about any potential worries and then you contact them if you have any concerns/symptoms. Just make sure that if you decline them, that it is all an informed choice- you know of the risks, you know of the symptoms to look out for and you then decide what is best for you. 

It's a lot to think about. Try to hang in there until Monday? when you have the surgery. Hopefully by this time next week you will be back home, recovering and one step is then over. I wish you well with your surgery but please do keep using the Womb Forum and The Room as much as you need. 

Jane

The therapist would offer zoom but that's another of my issues, being watched (another echo from the past) and I find video calls can do that and phone just isn't helpful for me. Tbh I probably won't be in a good therapeutic place and may well need my shield up in order to get by initially without being consumed by it all 

Thank you for your numerous replies, I do realise that I am hard work.

Hi B74, I have not been formally diagnosed but from my own research believe that I have CPTSD from childhood abuse by my mother. I only began to realise the damage in about 2000 (at age 41), and have really only started to gain an understanding of my issues in the last 3-4 years, including becoming more aware of when I disassociate. I’m hoping that awareness of it will be a step to being able to not need to do it but I’m not quite there yet. I also have come to believe that I have ADHD (from the trauma) and also may be on the autistic spectrum, but that it’s gone undetected because my childhood taught me to dissociate and mask. I’m still very much learning about my damage. Our backgrounds and experiences and trauma are different, but I can empathise with some of the feelings you’ve mentioned. At one stage i avoided having a smear for 9 years. I also chickened out of an endoscopy some years ago as I the thought of being held down and having no control triggered me. Even when I had cancelled the appointment, when it came to the day and time, I had an anxiety attack at home even though I wasn’t going.

I read what you wrote about a gynae check up at 6-8 weeks, I did wonder if the nurse said that to you as she may not have understood and may have thought it might reassure you, ie she may have thought it was what you wanted to hear. Any follow up appointments/check ups would likely depend on whether any further treatment was needed and your individual hospital’s policy. And we’re free to refuse. I got my histology results two weeks after my op, didn’t have an internal examination then, nor did I have one before my external radiotherapy. The oncologist said she thought I might still be a bit sore and said that as long as I wasn’t worried about anything there was no need. I think the first internal check up I had was 7-8 weeks after my treatment had finished, ie 6 months after my hysterectomy - even then I was asked if I was happy for that to go ahead and could have said no.