The last treatment and feeling cut loose and lost

Christabel03

I had my last treatment on the 30th of December which in my mind was supposed to be the happiest day after a long road with bc. I have to admit the lead up to that day I found so hard to handle, I was scared, I felt lost like I was losing my security blanket and what perhaps was keeping me alive. I almost dreading going in for the last dose of Herceptin and the usual catch up with my oncologist. 
Treatment went fine and I was told to go and ring the bell and I will see you in three months and we won't scan unless you have symptoms of anything. There was no talk of remission or anything about being ok if that is the right word? This has left me so unsettled, I feel pleased to not be going every three weeks for treatment but at the same time I feel left to my own devices and my head just takes me to a place of "oh well they are probably just waiting for something to show up again". Not scanning at all makes me think why not and should they? How do I know everything has worked? 
I guess after such a long regime of having to turn up for appointments etc you do feel a little lost, but I just don't quite know how I feel, am I survivor or am I still going? I honestly feel like I don't know who I am anymore (although Tamoxifen could have something to do with that!!).
Just needed a place to put this all out today, such a lot of strange feelings. 

Afraser

@Christabel03

I think you’ve nailed it - treatment can give you a wonderful sense of security. You are doing something positive, keeping cancer away. It’s also a regular schedule, a predictable path. Losing both can be very disorienting. 

But the point of the treatment and the schedule was to resume normal living - with all its benefits but also all its uncertainties. I experienced that slightly lost feeling a few weeks before I finished treatment - not depressed, but not entirely sure who I was now. A few weeks with a good counsellor was immensely helpful. I just needed someone independent, not a friend or family member, to remind me that I wasn’t a label and I didn’t have to prove anything. I was to live, thrive and be happy. Sound simple, it can be harder than you imagine. Talking to a stranger can be very liberating. Best wishes. 

iserbrown

Treatment has become a discipline.  All of a sudden it's over!  So busy in the moment and checking the calendar for the next appointment 
In time you'll settle into the everyday and develop scanxiety if and when you need a scan.  I have one every 12 months on the good breast
Feeling lost is not unusual and good on you for writing your post.  
I found side effects are not as intense,  bone pain lives with me but all the other side effects have waned.   The body seems to adjust.
Take care

Brenda5

I have asked doctors why not just do a full scan to rule out any cancer. Their answer has been scans turn up all sorts of quirks we have in our bodies and then they have to investigate it with further testing and its usually nothing and is very expensive so unless you have constant pain or some part of your body isn't working properly, its best to let sleeping dogs lie. I have survived for 7 years post treatment now so I am doing pretty good. I do see a psychologist (she deserves a medal for putting up with me) regularly where I can down load all my frustrations and worries and she gives helpful links to what ever I need in life.

Just be happy you are off the merrygoround of treatment and do your best to get back to some normalcy in life. It's the little things will bring you joy. One of my best was when my nails could finally open a ring pull can. Another was when I actually needed a hair cut again. 

Rosie9740

I’m not there yet but definitely think having some counselling might help with the adjustment? It’s such a journey isn’t it ? Congrats on getting through it all !

Christabel03

Thanks everyone, so nice to have understanding, to realise you are not the only one that has had these feelings and to feel comfortable to be able to share.

@Rosie9740 I am about to get back to counselling to help me manage how I am feeling. I can remember so well thinking I wouldn't ever make it to the end of treatment and now here I am!

@Brenda5 I hear you! The first hair cut was a great day and yes managing to do my own buttons up was a big day too, my neuropathy has been quite bad lots of fumbling and trips etc so it is a good day when you realise perhaps things look a little brighter and you can manage on your own! 7 years post treatment gives me a huge amount of hope and I understand the scan side of things too when you read it laid out like that. My onc did say the expectation is you just go off and live your life, so in that respect unless there are symptoms it makes sense not to scan. 

It is such a head game isn't it and I am sure in time I will figure out who I am these days.  @Afraser you always seem to know what to say to sum it all up, thank you xx

Molly71

Hi @Christabel03, I know how you feel. I almost started a similar post this morning. I finished radiation just over a week ago, after almost 6 months of chemo and had my chemo port removed last week (for stage 3a, grade 3). Relieved - yes, but lost and feeling strange, absolutely. I see my oncologist in 2 weeks to get my hormone tablets (yeh!). At my last visit, he basically said, your initial scans were clear, you've had all the treatments and you will be on tablets, so go and live life... simple statement ...... not that easy to do (for me anyway). Yes I am happy no more active treatment, but now it's the next chapter and no-one knows what may or may not happen, that's hard. I am already thinking about my Mammo/US in a couple of months with my breast surgeon, so my scanxiety has already started to kick in, so I'm trying hard at the moment to forget it, and try to enjoy the next couple of months, again easier said then done. I've been working with a counsellor since diagnosis and this does help, but I still struggle. Given it's early days, I am trying not to be to hard on myself. I still cry almost everyday, sometimes on my own, sometimes in front of family, but again it is only early days. Some days I have the energy to keep myself busy and this helps. I whizzed around the yard on the ride on lawn mower today and now I'm having a lovely "non-alcoholic" Sav Blanc watching tennis. Next week my sister and nieces and nephew are coming and will be here for my birthday, so will be emotional, but wonderful to have others to focus on. It's certainly a journey and for the first time since my diagnosis last April, last week I actually wrote the words Fuck Cancer - in a way it felt good. We seem to be at a similar stage of our "journey", I wish you all the best 

Christabel03

Hi @Molly71, we do seem to be at a similar stage don't we. I was Stage 3 triple positive.
Yes the simple statement of go and live life is really hard, I don't find it easy at all. I had counselling at the start when I was first diagnosed which was October 2021 then I stopped going and I now know I will have to go back again as I feel its time. There just seems to be too much going on in my head to deal with it all myself. I cry too and find it catches me off guard sometimes just when I think I am fine the tears start. I've gone back to a new job three days a  week to basically try and boost my confidence and give me some feeling of normality but I'm not enjoying the work which doesn't make it easy. Neither does feeling absolutely exhausted by the end of the day! Some days it really is difficult to get up and get going. I had my mammo and ultrasound back in October last year and I was fine well I thought I was until I went in for the mammo and then I completely lost it so I can only imagine the anxiety if and when another scan will happen. 
How wonderful you will have your family around for your birthday, that will give you others to focus on as you say and I am sure it will be such a good thing. It really is fuck cancer isn't it!
Thanks for reaching out and I wish you all the best as well xx

Julez1958

Hi to all who have posted on here.
As has been said before, breast cancer messes with your brain as well as your body.
I once had a boss whose answer to all distressing situations was work and keeping busy.She retired at 84!
There is something to be said for keeping both the body and mind active ( not necessarily  with work) to prevent “ dwelling” - especially in the lead up to scans and awaiting results.
Many find meditation helps too.
I have found keeping a reasonably busy life ( but with enough “ me” time) helps me not yo dwell in dark places and regular exercise ( swimming and walking mainly) are great  for both the mind and body.
I also enjoy the odd movie as a way of escaping and many ladies also find creative pursuits help .
No one said this stuff was easy but we have all “trod the boards “ in one way or another.
Take care.🌺