Panicking and can't control my thoughts

Hi Everyone

I’m struggling to control my thoughts and I don’t know what to do. I’m on Palbocciclib and letrozole and have extensive bone mets and a bit in the liver. I started in November and after delays each month, during which period my oncologists changed, the new oncologist (who I find harder to talk to than my previous one) has put me on a lower dose. I got my head around this and was ok. We had a few good sessions and my bloods were ok but this time they are too low and we are going to leave it a week before I do my next treatment. This is at the end of a week where I just feel like the end is nigh and I can’t control my panic about everything. 

When I went through treatment with my primary breast cancer, I was able to put things into a box (ie deal with them when they came up as I accepted I couldn’t control everything) and not sweat the small stuff but now with everything I’ve got going on in my life and the decisions I need to make I just feel constantly overwhelmed. My mobility has improved hugely from not being able to lift my leg up to being able to walk around the house without any aids which is fantastic but I still keep wondering if I’m being stupid feeling hopefully and should be making plans to die soon, or rather preparing myself and making sure everything is in order. It’s that balance between hope and being realistic and I just can’t get to a place where I feel ok. 

I always feel low/depressed/sleepy on my week off anyway, but usually when the next round starts I feel fine again and the delay has just set me back a bit. Also I keep seeing all the advice to “find your tribe” and people to talk to, but everything on social media just makes me even more depressed and it just feels like there is death everywhere. Then I beat myself up because I am ok ish, should enjoy that and need to deal with things when they happen not keep trying to control and anticipate everything but I keep flashing back to the pallative doctor in hospital telling me it is really bad and to get things in order. The oncologist on the other hand has just said they don’t know and we need to see what happens, which I think is better as let’s face it none of us know what will happen as we are all different. 

Sorry this is a bit of a brain dump. I just can’t seem to snap out of it. 

Goldie , I’m so sorry you are feeling so low and overwhelmed . Would it be worth giving the nurses on the forum a ring tomorrow just to talk things through ? They are so good at making you feel calmer . Do you have secondary breast care nurse to talk to , I know not all hospitals have them .

Hi Goldie112

I agree with Jill that talking to someone soothing like the nurses’ helpline might help a lot. I’ve used the service several times and always found them helpful and supportive.

We seem to be the reverse in our experiences. I floundered through primary treatment but, with my secondary diagnosis, a calm settled over me (or at least over the cancer me) and I don’t seem to worry about anything till I have to. Everything is shut away in a mental box till I need to confront it. You’d think then that I’d have my affairs in order but, each time it comes to my thinking about a will or an LPA, I feel overwhelmed and opt to ignore it! Two steps forward, three steps back. Some things just feel too big to face properly. 

I was already on treatment for panic disorder and GAD and that medication may have helped this time round. I don’t know. I still get the same phobic reactions… yet scan reports and blood results don’t faze me. Weird. Have you considered talking to your GP? A perpetual state of anxiety is not good in the best of circumstances and s/he may want to try you on an SSRI. It’s very common among secondary bc patients.

The other thing (my personal opinion) is that it seems to me all you can do is bite the bullet and seek clarification from your oncologist. If you want to know your prognosis, then ask. If you want the palliative care nurse’s comments put in context, explain what was said and ask for opinion/clarification. I don’t think you’ll be able to let a fraction of the anxiety go till you hear it from the horse’s mouth. You may well find the nurse misread the data, for example, or referred to something written before you began responding to treatment. That IS personal opinion though.

I do hope you find a solution. I know what living with inordinately high levels of anxiety is like and it’s n kind of life to sustain. Take care

Jan x

Just to say that panicking and a racing mind must be pretty exceptional not to get with all that we’re going through. I was diagnosed at 39 de novo in June 2020. The mental side has easily been the most difficult part for me and I didn’t even know what anxiety or insomnia were before diagnosis.

The list of tips earlier is amazing. I find it’s all about relaxing the mind. I struggled with the thought of living with all the drugs and treatments forever and that’s the best I could expect. I had counselling and made peace with this. 
As we moved into Spring I had another wobble, but have just tried to go back to my toolkit of a mindfulness track every day

doing exercise, even if it’s just a 10 minute gentle floor stretch.

going for a walk

watching the clouds

having a really good cry and writing it all down.

trying not to dwell on not feeling great as that feeds it
Not thinking about what tomorrow brings or panicking about a day in the future.

I think it’s really difficult for anyone to give a time expectation. It depends on how you personally react to the drugs. I’ve been on palbo for 2.5 years with only cancer shrinking. Nobody could predict that though. If the palbo hadn’t worked then I would’ve gone through treatment lines much quicker, but nobody knows which drug will work for them.

I really hope you find some peace soon and the forum is always here for you.Xx