Can't cope

• Yes I can't complain they have been amazing and quick every doctor and nurse I can't complain at all. I'm ok I describe it as feeling like I'm drowning every day but just keeping my head above the water. Every day is different it really is but it's a constant elephant in the room always there. I don't sleep to good to be honest I'm up till about 2-3 in the morning then I get a few hours but I'm up because I stay watching TV it's the distraction for me I don't want to be alone in the dark with my thoughts I start to have panic attacks then so I stay up till I'm almost falling asleep do u know what I mean. How are u feeling in your self are u sleeping and taking care of your self 

Hey Darling34 and Binijac,

Thank you, both of you, for being honest about how you are feeling. I really feel for both of you.  I recognise all the anxieties, all the constant pressure.  I remember a feeling of just constantly waiting for something - not knowing what it was, but being pretty certain that it wouldn't be good.  

I mostly didn't struggle with sleeping except when Fi would keep me awake (she went through a number of manic phases due to both the brain tumour and also the meds she was on).  When she was at her most manic, we both ended up severely sleep deprived and almost at the point where I couldn't look after her any more.

Darling34... Sorry if I'm stating the obvious... Any chance you could exchange an escapist novel or something for the TV?  Screens are supposed to be bad - and that is certainly my experience.  Reading tends to help me drop off - I guess because it activates the imagination.  Not always - but on average.  And the other thing we were recommended which worked for a while was listening to mindfulness meditation stuff.  There are some OK visualisation stories on the headspace app (you can get a two week free trial) which (again) help to activate the imagination.

Keep going with the counselling.  It does feel weird.  Lots of people have counselling because they need to break unhelpful patterns of thinking - that is not the case for you.  You have a real problem that can't be fixed through counselling... but... it does help to talk about it.  And in terms of what to talk about... I just used to start by talking about what had happened since the last session.  That would naturally lead into me talking about frustrations or fears and sometimes I would end up crying.  But it would really help to zero in on what I was worrying about.  And it helped me to understand why people (including me) were reacting as they were - which helped me cope with friends and family better.  And also improved my thinking between sessions - which made everything a bit easier to bear.

And again... keep going.  It's feels like an endless battle, but it isn't.  It may not have the end that any of us want and we can't predict when it will come.  But you are doing your absolute best - try to find some satisfaction in that.  And try to make time to talk to friends and get out for a walk (it has stopped raining here today!) or some cake - you've earned it.  You are doing something that is really hard, but really important.  Be proud of yourselves.

Pete

Morning sorry I tried to reply to you last night but the site wouldn’t let me.    What you have described is just how I am feeling I don’t sleep until very late either (thank god fir Netflix)  part of me doesn’t want to sleep as when I wake up it’s the first thing I think about to be honest it’s all that I think about I cry every single day to myself since mum was diagnosed I don’t want to be in this world without her and that terrifies me.   I have so much anger too.   I hadn’t mentioned before but I had cancer myself 20 years ago I had a rare gynae cancer which was treatable but I had five months of weekly chemo lost my hair etc so I know how mum is feeling to a point but obviously she had breast cancer 5 years ago and now this time it’s terminal so it’s different life is so unfair bloody cruel and unfair.  You have been through so much yourself with your dad and now your mum.  Your are being so strong for  your mum and taking great care of her she will be so proud of you.  

Hi good morning, I feel exactly the same I dread going to sleep and then I dread waking up I dread every phone call when I'm away from my mum I think that phone call is the phone call. And netflix has been my saving grace as well. What I have learnt this week is by god how strong we are I surprised my self this week with how strong I have become I didn't think I could get through the week yet I don't it and I surprised my self so I think we need to remember some times just how tough we actually are in a situation we never ever wanted to be in I to cry every single day I feel like I can't remember the last time.i had a nice day it's a constant weight on you isn't it but this helps speaking with you and others we understand how eachother feels and to speak openly about it it does help xxx 

Yeah well that’s it you’re coping because we have no other choice but it’s never the situation anybody wants to find themselves in.   You get through the day and I now know what everybody means when they say a day at a time.   Yeah I feel like that too I feel like nothing is nice anymore because we have this heavy weight on your shoulders because your mum is going through this.   I know if I told my mum every true feeling that I have she would be devastated and it would  make her feel worse so I could never do that to her.   That’s why im so glad we have this site.    It really has helped.     

I can't believe that you to had cancer I'm so glad you have come through the other end you can completely get what your mum is going through. I'm having genetic testing soon because both my parents had cancer to see if I'm likely to get it. Even tho you have had it once maybe it's something you could have done to only if you wanted to to see maybe how likely u were to have breast cancer maybe if they could predict these things early the better chance we get xx.  I meant to post this to u early

I to hide a lot of things I want to say because it's not fare to my mum so I keep it to my self I never.got day at a time either at the start but now I do it really is different every day and some days I don't even want to get.out of bed but some how I do 

• Hi Pete good morning I hope you are well. Thank you for your kind words I truly love hearing from you. You have such a calming empathetic way you speak. I like reading I just haven't done it in a long while so I wouldn't mind reading a book. I always use to meditate before all this it helped me to relax over the years but now I don't think I'm strong to stop my thoughts wondering off and to bring them back so I haven't tried. The counselling was very strange I don't know if I was quite ready for it ready to truly open up yet I'm not sure but I'm going to stick with it and hopefully feel more comfortable to open up soon. I have surprised my self this week I didn't realise how strong I was but I got through this week and I didn't think I could so I'm taking that as a positive nice thing to say about my self this week. I feel like my main trouble at the moment is I understand when people say make memories cherish these last moments but I feel like there all tarnished I'm trying to enjoy the good days my mum has but it's filled with great sadness because the whole time Im sat there repeating don't cry don't cry in my head. Then my silly mind always says to me this will be the last time she will be sat opposite you this will be the last so I can't fully enjoy these moments when they are tarnished with such hurt. Did u feel like that do you have any tips x 

- thanks.

In terms of reading, counselling, meditation - you do it all in your own time and you do what works for you.  Everything is fine - we're all different and you are the best judge of what you need.

I know what you mean about the sadness.  I have been carrying around a great sadness for the last few years.  I think that is normal.  I feel a bit less sad each day, now - but I still have to be quite careful what I think about.  And I have to interrupt myself sometimes because if I think about all that Fi went through in the last year then I do get angry and upset.  And yes... I had plenty of those "this could be the last time..." moments.  I think "making memories" can just be extra pressure!  I think it works when people have a diagnosis but are basically well.  But all the positive memories I have of 2022 are bittersweet - for instance thinking about how magnificently Fi coped with the various indignities that were heaped upon her.  Also, I am proud that we managed to help her to live a full life for as long as she did - but that is not "making memories" - that is just making the best of the days that are there.  If you can do that, I think you are doing brilliantly.

My only tip, I think, is to make sure you aren't doing it alone.  I had a handful of people who would come over quite regularly for a few hours at a time to hang out with Fi - either to release me to go out or eventually (when I really couldn't leave her at all) just to spend some time with both of us.  Mixing some other people into the household can be really helpful because it gives something else to put the focus on - they bring their own stories of life in the real world.  My teenagers and the dog were also amazing because they bring their own energy and life - so even on the crap days, we still found time to laugh.  I hope you have some people around who can lift you up a bit when you need it.

I always found it funny that people would ask me how I was coping and I'd just think "I don't have a choice".  Some days I would think it wasn't a big deal - it was just life, I was just getting on with it - other days I'd feel quite overwhelmed.  And then every so often I would get a perspective shift and think about all that we had been through as a family and, like you, wonder how the hell we were still standing.  So you should feel proud of yourself.  Standing through the storm is tough... you are engaged in a heroic enterprise. 

Pete

Thank you for telling me your story and how you have got through it really does help. I have noticed that other people bring there own input into things and it does help me not to focus on the bad bits so much when they are around. And I know some days are definitely harder than others and I don't know how iv got through some days some days are a complete blur to me. But my mother is the bravest person I know the way she has delt with this has amazed me and I know I'm doing the best I can go make the last few months for her as calm and pain free as I can I know I will be able to say after I don't my best for her and she be so proud. How are your children through out this I know losing a patent this way is so hard when your a child it honestly does shape who you are when you grow up and almost make them more stronger people I know they won't know that now but it will. And I know some days the thoughts hurts so much when you think back and it's hard to bring your self back to the hear and now people tell me to feel what I feel don't block it out it's all part of it and I'm trying my best to do that I am a very closed book I don't ever express how I feel but I'm trying a new approach to not bottle it all up I still feel like I'm living on a knife edge tho thinking any moment I'm going to fall off and lose the plot. 

Yeah thst was shocker at the time too but I was lucky to come through it.   Yeah thst has been on my mind about the breast cancer.  How did you go about the genetic testing?