living with diagnosis

Hi

I just wanted to say that I know you are feeling totally.  I was diagnosed in April with secondary breast cancer (first time diagnosis) I was completely devastated (still am). I also do not at present feel unwell - and it is a bit like you are waiting for something to happen.

I also am envious of the person that is going to be living my life with my partner - I don't like her - whoever she is because that is supposed to be ME.

I am on palbociclib and Letrosole at present with 4 weekly bone juice (infusions).  Just had my results for 3 month scan and as present it is stable so was elated by that small piece of better news.  I do work full time still - my choice, I wanted some normality and distraction. I do get a bit tired - not exhausted but just a couple of foggy days every now and then. 

So no I don't know how long I have and when really think about it, I don't want to know and whilst I am feeling ok, I am ok.  I have really down days don't get me wrong and get angry but realise this won't change a thing. New research all the time and tablets.

To coin a couple of phrases from other people on this site - Living with it not dying from it.  Also it is a chronic illness, although not curable is treatable.

Take care, there are many on this site who are a long way ahead of us who are still marching on and I have found support and understanding from members in our situation.

Stronger together

Lyn

hi, thanks for replying..it sounds like reading a letter from me to me!!...same boat..having blood test tomorrow to see if ok to start plablo..a step forward I suppose. the quiet times at night worse for thinking so sleeping a bit hit and miss...I know ive got to think of it as chronic illness..but life more complicated than that. took along time and tests to figure out what was wrong and now looking for job not knowing if this plablo drug will make working difficult ..so feel in limbo..and if I do get job, how do I explain all the routine trips to hospital?..AGHHHH!!!!...don't panic!! having a good day today!!

Hi

Good luck with the blood tests.  Let me know how you get on -  do have sleepless nights too - its not unusual (don't burst into song here).

One step at a time, if you are successful in your job hunt, yes you may need to tell you immediate manager as you will need time off initially for appointments/blood tests - I was at the hospital every week for the first 5 weeks - after a false start on a different type of tablet I was swapped to Palbo. Honestly I am ok on it for the moment and just finishing second cycle.

Will send you a 'friend; request if you want a chat anytime about anything, I may not always be able to help but I find that sometimes just writing things down helps.

Hi acer.  I was diagnosed in January and for the first few months my emotions were raw, with grief and fear mostly.  Although some of my first feelings were about envy towards anyone who was more than 10 years older than me (I'm 50)!  The diagnosis was the first thing on my mind when i woke up and coloured most of my thoughts during the day.  I wish i had given myself a wee bit of time out to slow down, sit with the feelings and work through them but i was too scared to do so!  8 months later and my perspective has changed to a more positive, upbeat one.  I've worked through some of the feelings of fear and grief and when they reappear, as they do from time to time, it's a bit easier to manage them. I hope you find a level of peace and acceptance soon too. x

Hi Acer,

I understand exactly how you feel, I got my diagnosis on 17th June. I have had problems with my shoulder for over 30 years( I'm 57) but then the pain got a lot worse! I then injured it at work and so it all began.First painkillers,  cortisone injection etc, then I mentioned that I'd had breast cancer 16yrs ago so was sent for an MRI scan, 2days later I was told it was cancer. Long story short I have secondary breast metastases in my shoulder, spine, pelvis, both femurs and my other breast.

Some days are perfectly normal and other days I can't think straight. I can't bear the thought of leaving my family behind, that really is the worse thing for me, they are all so upset and it's heartbreaking, even though we all try to keep everything upbeat it's always lurking in the background. 

On the plus side( can't believe I'm saying that) I'm going on a beautiful holiday in 2weeks and we are all planning to go away together in the new year...22 of us.

I wish that I had some kind of idea of how long I might have left though, just so I could get my head round things a bit more

Lo

having a positive day so good thoughts here!!...I don't think I want to know my " clocking out time"..cause if I had a "normal" day, id might think I had wasted it and that would make me feel worse. anyway in the real world no one knows...could get hit by bus tomorrow!!..isn't it better to just appreciate each day and make memories..but more importantly like you r doing..make plans, something to aim for. Im stubborn like that, bck in april,just before official diagnosis was REALLY poorly..but due to go to Rhodes for holiday, no one in family thought id b well enough to fly , but I wasn't gonna miss it so I kinda told my body NO!! ...and somehow I did it. my mum had cancer..seemed to somehow fight it while she cared for my dad , then when he died it kinda reappeared like she refused to let it take over while he was alive. but then she seemed to know time wasn't on her side and accepted it.  I think we all inside us will know when its time to live and time to "rest"  so...enjoy your holiday, do something crazy..i went parascending!! (53 years old)...plan new year..live it up, dance on tables...we r fighters and stronger than even we know!!!...……..take care

Hi Acer, your post was so lovely and honest, and I understand the panic and fear.  I was diagnosed with breast cancer in my breast and in my spine in November of 2017.  A year later 2018 with two wee dots now in my liver.  But a year later now I am still well.  On oral chemo that fatigues me and cracks my hands and feet but they've brought the dose down and given me three weeks off so I'm feeling better.  I'm replying really to say I remember feeling just as you did.  Like what do I do now?  I know I've got the shortened life diagnosis but I'm still well.  How do I live with that?  From my perspective it kind of gets easier over time in one sense because I've learned to live in today.  And I've learned to have markers to look forward to.  And I look at people now and think, we all are terminal, everyone.  And somehow that makes me feel normal.  I think the secret, once you get over the shock, is to live fully in the present.  I read a bit about dying just to normalise things so I can get on with living and doing the things I love, with the people I lov.   I've a lso been surprised at sometimes how freeing it is to say what I really think because I'm losing concern over what people think.  I've loved that.   Of course there is the profound sadness and our children and partners,   but while we're well live fully.  Some with cancer don't get that opportunity I've realised.  Much love x

thankyou for your words..i agree. I am seeming to see things different . am on letrozole and plablo which has been fine. I suppose my first ct scan in Dec will be the hard one , but in reality there is nothing I can do but fight back in my head...let the meds do their stuff and im just gonna be bloody minded and not give in. I am kinda looking at people in different way..like when hubby loses his temper over nothing ( bit of a victor meldrew) I just say..why r u wasting your energy being like that!...amazing how , when I thought my family were close, how we all have seemed to got closer ..I suppose its sad that it takes events like this to bring the importance of each other home. we have been given a gift with a sting at the end..we get to choose our future and how we want it to be...thanks for being here , take care