Intro of Pennyrose

Hi,

I am a very private person but by way of introduction to this group - I will try to fill you in on where my journey is up to.

What a journey ! I had breast cancer in 2009 and had the obligatory lumpectomy, chemo, radiation and 5 years of Hormone blocker drugs - all with their own unique side affects. But I did everything asked of me and eventually went back to work - just 2 days a week but I was quite happy with my semi retirement - then my work gave me three weeks notice (retrenchment) - and at the same time (March 2016) I saw my dermatologist who removed some bits and pieces including a "cyst-looking" thing from the back of my neck. It was a glandular cancer - not a skin cancer - and I waited 13 days to be told the pathology showed it to be Breast cancer.

Not a nice way to start my retirement - but since then I have had scans to show the secondary breast cancer is now in the lining of my lungs, lining of my heart, various spots around my chest and one in the vertebra. I began chemo almost straight away and have seen a radiology oncologist but at this stage he does not want to do radiation. Next week I am due for follow up scans and then the oncologist will tell me where to from here.

I am 100 klms from the oncology treatment and live alone, though I have a partner - he lives 100 klms away as well. He is always here to take me to treatment and appointments. My kids are not close by but are a great source of comfort to me . Yes I worry, mainly about those I care for. I suppose the uncertainty is the greatest issue. Do I make plans for some time with them? or do I make plans for a funeral?

My! I'm getting all self absorbed now and miserable.

Perhaps I will leave it here .

Hope you are all coping as best you can. - Pennyrose

coping

rural

26 Replies

maggie001
Member
9 years ago
We have so much in common ElaineG!! Both of my daughters went to UWA. Hope things are going well with you
ElaineG
Member
9 years ago
Oh and Maggie - I'm an old Perth girl - went to primary school (before Adelaide and Melb) then back to UWA and was there for the Americas Cup!
ElaineG
Member
9 years ago
Yes - I understand.
I've struggled recently having just finished a PhD - but full steam ahead (with awareness and balance) before I have to stop - be that tomorrow or in 30 years+ time!!
maggie001
Member
9 years ago
If I am still in Sydney on 13 October 2017 I will most definitely see you in Martin Place! I am originally from Perth and moved to Sydney for a work opportunity. I am now grappling with the question of whether to continue working or whether to give up work and focus on my health. If I do this, I will return to Perth where I have the support of family and close friends. If the path of the uncertain road ahead were clearer this question would be more easily answered.
ElaineG
Member
9 years ago
Thanks Judy!
Yes we have to be proactive, take charge patients - AND find the 'right' oncologist for us - i.e. as individuals. For me that was 4 and the spark in that consultation was like a light from heaven - seriously - I now have totally, unswerving faith and confidence in her and I can now better manage all the other aspects like diet, exercise etc.
We deserve the "best" treatment that is possibly available and although that differs for all of us, we as human beings have right to that treatment and it should NOT be a function of where we live....

Re fighting spirit - again agree with that - it is one of attitude and inner being strength as opposed to fighting the cancer - because that's a joke - the cancer is part of US - so no, we cannot fight ourselves - so yes it is semantics but MBC is all about acceptance not fighting it. The newer treatments will manage and contain it - and with less side effects and increased time before there is further disease progression as time goes by.

So.... hopefully you will join us in Martin Place Friday Oct 13, 2017?!

Exercise is key :)
maggie001
Member
9 years ago
Hi ElaineG, I love reading your posts and today they have really helped me turn my mindset around to one that is more positive. You have a lovely way of 'saying it like it is' with a positive spin - thanks!
Maybe it's because I am feeling that the horrible toxicity of Afinitor is slowly leaching out of my body and I feel a quarter human , or maybe it's reading the inspirational, informative first hand posts from so many ladies on here, but now I feel more empowered to ask my oncologist to change my treatment plan to Letrozole and ask for consideration of HIPEC (no harm in asking right?) .
I am feeling a fighting spirit coming back into me after being bowled over and feeling defeated by my mbc diagnosis a month ago.
I would never have thought we would need to be so invested in our treatment but I am more convinced than ever that we shouldn't just accept what is dished up to us.
So thanks everyone, very happy to have found you all and I hope you are all having good days and nights,
cheers Judy
ElaineG
Member
9 years ago
Oh and Pennyrose - sometimes these sites as great as they are can keep you feeling trapped in the smog - so again you have to be judicious with time management - and NEVER go on them in the evening.... :)
ElaineG
Member
9 years ago
Yes! And I agree!
I think (and read very early on) that PSYCHOSOCIAL support is critical.....so quickly established a key group of girlfriends around me - all great but all busy....
So, yes they are all "there" - but sometimes even the close ones - you don't want to call them or even answer their call because you feel flat - and they never quite get it - like we all do......
it is the strangest thing sometimes - being isolated within our own prison - but that prison can be our mind - but how do we escape that prison - well all the "little things" that so many other women have mentioned - and sometimes "just doing it" even if we don't feel like it - eg a walk or a meditation (guided so you can have that third party to focus on!) etc. etc.

but it's a MASSIVE ASK ISN'T IT ..... DAY IN DAY OUT!!
Pennyrose
Member
9 years ago
Hi Elaine,
Not sure if this is the spot to reply - so hope you get it.
Thanks so much for your insight and a different way of looking at our situations - we are very lucky to have this site and this organization to share and care for each other
It makes it so much easier.
Thanks again so much.
Pennyrose
ElaineG
Member
9 years ago
HI PennyRose

With a good dose of humour, I would answer "both" re your Question of making plans for life or funeral!
Seriously - I hope that makes you smile :)
In all seriousness no-one knows (think of those people at Dream World this week).

The good and bad thing about our situation is that we KNOW death is real - not something many of us deny or struggle with all our lives. If anything it makes us more determined and or resilient to do the things that matter - when we are still here - even though at other times we feel like curling up in the foetal position and DOING NOTHING - because why bother? Sometimes (having just finished a PhD) I wonder what is was all for and more importantly, or more recently, so, what does that mean now - how can I use it etc. before I go?

Re your isolation - this can be good and bad....
It can be difficult if you are not in a position to drive but sometimes it can be a mindset thing.....i.e. I sometimes feel more isolated at home in a busy suburb in Sydney with traffic and people all around as opposed to being by myself in nature....
but sites like this are so awesome because we can connect with others that really understand the ups and downs of what we are dealing with on a daily basis :)