4 months post trach and feeling lost

I’m not really sure how to start this post. Here it goes.
I had surgery back in June for stage 1 adenocarcinoma. Simple trachelectomy with bilateral pelvic node dissection. Final histology confirmed staging as 1a2 with NED. Now under surveillance with next appointment in December.
I am so grateful that my surgery was successful and that things are looking positive. All the more reason why I apologise if what I’m about to write offends anyone…
I feel completely and utterly lost. I worry every day that the pain in my back is a sign of recurrence. Lately I’ve been getting pains in my lower abdomen, sometimes shooting pains and sometimes dull. Again I am scared of what this could mean.
The rational part of me knows that it’s highly unlikely that this is anything sinister, but I can’t quiet the other voice telling me otherwise.
I feel huge guilt - for feeling this way, for feeling this way given how early my cancer was found, and even bigger guilt for not “having had it worse”.
More and more, I daydream (more like ‘daynightmare’) horrible scenarios where it comes back and what that would mean.
I can’t seem to get on with my life.
I am so sorry if this seems silly and offends anyone going through worse.
I don’t know if this makes sense to anyone, but I’m just wondering if anyone has felt this way? I feel like I’m losing my mind and I suppose I’m just after some reassurance that others have felt the same? And maybe that things get better?

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Hi, I haven’t gone through your experiences so I can only comment from my own.

Fear is an emotional response, it doesn’t matter how reasonable or not it is. Fear can’t be resolved by reason. You need to acknowledge it and then find strategies to manage it.

I got white coat syndrome at one point. It doesn’t matter how irrational it was to be afraid, it didn’t stop my blood pressure rising dramatically and then stressing me out because it was high as a result. Whereas if I was rational I knew I didn’t have high blood pressure but stressing about it made it happen. It took a long time to break that cycle.

What worked for me was distraction, becoming grounded, i.e physically doing something else, my husband pinching me or holding my hand so I refocused

In my life sometimes the worst happened, other times it didn’t. Worrying or stressing about it neither stopped it happening or made it any better. What I did learn that worrying about it made my misery last longer, as well as it happening, I was miserable before it happened. And I always dealt with it.

So now I am determined to always be positive and happy because otherwise I just live in misery, and I refuse to do that. This is still the only life I have, it doesn’t matter how long I have, I’m going to enjoy the ride.

Good luck.

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Hi ZettiLoretti<

I’ve been where you are and felt very much the same after treatment. For me, it was a combo of feeling grateful that my cancer was found so early and could be treated, combined with an over-arching fear that it would come back/hadn’t really gone etc etc. In those early days I knew in my heart that I would never feel the same and really didn’t think that I would ever be in a position to live a day of my life without thinking about cancer and worrying.
But, and this is a huge, completely unexpected twist, I did move on. I barely, if ever think of it and only very occasionally feel a twinge of worry. So you will get there, I promise.
Right now though, you are still dealing with the shock of the diagnosis, the fear of the early days, the fear of the treatment and all the worry and anxiety that any diagnosis brings. Give yourself time. Look after yourself. Don’t rush yourself. You’ve been through a lot and it will take time. I too felt that every twinge was a reoccurence and that’s only natural. My own cancer came out of the blue with no symptoms, so I was totally blind-sided. This will pass. Do whatever it takes to support yourself and be kind to yourself. You will get through this. Don’t beat yourself up about this, treat yourself gently. I’m rooting for you!
xx

Hi ,
I had 1a2 same type but I had a radical hysterectomy. I’m now 12 wpo and I feel the same , I feel guilty for feeling this way . I feel like I should be happy but I’m not . I also feel like I will never be the same again , Iv just turned 32 and I feel like although my cancer has now gone , I’m left in this dark hole . Which I can’t seem to move on from xx

Please call the Jo’s Trust helpline and have a talk with someone. That’s what they’re here for. They will have heard this many times because as you can see you’re not alone - but you need someone to talk to about how you’re feeling, and to help you rationalise this a bit. If anyone can help, they can - or point you to someone who can. X

Hi ZettiLoretti, just wanted to say that I’m at a similar stage to you and that I empathise.

For some reason that I don’t fully understand (and maybe let’s not poke at it too much!!) I don’t seem to be constantly worrying about the cancer coming back. But I am struggling with returning to ‘normality’ in other ways. I found dealing with the cancer so all-consuming that it’s left this huge hole, this huge lack of purpose. And something has to fill that. For me, it’s worries about my future financial security (since this is something I was already struggling with) but I think it will be filled with different things for different people.

It seems totally understandable to me that many of us feel plagued by worries now at every twinge. Maybe at least remember in whatever way you can - even if it’s just the vaguest way - that that doesn’t mean the worries are true. And also remember to think about the solution as well as the problem, i.e. if the cancer did come back, it would be caught very early because of being monitored. If it did come back, you got through it the first time so you could get through it again, etc etc.

I hope this helps in some way but if it doesn’t, know that it’s OK to feel the way you feel and I certainly don’t think you need to feel guilty about it.

Sending love.

Hi ZettiLoretti,

I’m 3 months post radical hysterectomy (stage 1B1 adenocarcinoma). I feel very much the same. I keep thinking I’m being silly for feeling the way I do, but reading yours and the posts that have followed, helps me understand that this is not unusual and it’s ok to feel like this.

I feel guilty and I sometimes think I’m overreacting. But what I try to remind myself of is the fact that I had a cancer diagnosis and had treatment for cancer - just like you have - and this is pretty big stuff!!

I don’t think I listened to my consultant when she said I had cancer. I was booked in for a LLETZ procedure (which I think I believed was going to be the only treatment I needed) but this wasn’t enough and they sent me for surgery 2 months later. It’s now, post op (with time to think!) that I have begun the process of actually hearing my diagnosis and processing everything that’s been and gone, and ahead of me too.

I worry about the cancer coming back even though I’ve been told ‘it’s gone’. I still have the voice in the back of my head saying ‘what if it comes back’, but that voice has gotten quieter and each day I get a little stronger. I don’t think it will ever go away, but I will try my hardest to use it as a reminder to enjoy the life I do have and make it what I want it to be.

I’m just starting to feel grounded and find my way now and I still have really rubbish days but they are getting less and less.

One thing I’ve been told over and over is to be kind to myself, please allow yourself to do this xx

I hope you find your way :slight_smile: this is not easy but you will get there xx