Seriously- How do you all do it?

For those wanting to share with others living with secondary or metastatic breast cancer.
Tracey Gibney
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Re: Seriously- How do you all do it?

Postby Tracey Gibney » Tue Sep 30, 2014 1:11 pm

Sam vent away here, we really do understand how you are feeling . I know where you are coming from re the 22 year psychologist, my daughter is doing psych at uni and she would probably tell you to just suck it up princess!! Seriously though I saw a psychologist for a couple of years when I was first diagnosed and it helped immensely to have someone to talk who didn't change the subject when you are frightened and concerned about your future. I agree you want someone older with oncology experience. On the whole I am doing really well but I also have days where I am down. Nobody is cheery every day, that hasn't changed because we have mets. Even though I would like my family to eat healthier, juice and meditate with me I have given up on that. I have found I have to do these things mostly on my own. It is a pain to cook two different meals and it makes it harder because I am not a willing vegetarian but i do what I think is helping me. You are not alone you have lots of people holding your hand in cyberspace!!
Tracey xx
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

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Re: Seriously- How do you all do it?

Postby horselover » Tue Sep 30, 2014 11:56 am

Hahahahahahahaha- I feel so healthy- then why do I feel so glum? Driving along I felt like rolling the car- DH is sick of the smoothies- Mmmmmm that lasted a long time - I feel so alone - I have not even got anyone to talk to .
He just burst in here telling me to take a chill pill - I ignored him - where else in the world can I air my dirty laundry??? Dont tell me to see a 22 yo councellor or I will come a rip your throat out.
sing like no one can hear you
dance like no one is watching

with love from Sam

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Re: Seriously- How do you all do it?

Postby mum2chloe » Sat Sep 27, 2014 3:01 am

Oh horselover,

You sound exactly how I was when I was told my cancer had returned, I was trapped in this period of no hope all doom and gloom the fog had settled in and I just cried and cried for days at a time, my whole life revolved around weekly chemo and back and forth to hospital all the time. It took me a good 18-24 mths for the fog to lift and feel some sense of self worth return I'm told this is the grieving process.

I am now stable and doing really well.

Easy to say give yourself plenty of grieving time and with time it will become easier to manage. Everyone has their own way of dealing with these horrible disease, I wish you all the best xx
Dx July 2002 age 28. ER, Her2 pos 96mm tumor. 8/12 nodes.
Mast. Chemo AC & Tax,Rads, Tamoxifen & Zolodex,
Nov 2008 Oophorectomy, Arimidex, Femara.
Oct 2011 Recon surgery LD flap
May 2012 Dx Liver mets , 2yrs Abraxane & Herceptin.
June 2014 Aromasin & Herceptin

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Re: Seriously- How do you all do it?

Postby chrismelb » Wed Aug 20, 2014 10:57 pm

Horselover your diagnosis is so new i would be kind to yourself and not expect to find your new normal for a while. Once u settle into a pattern with treatment then u might be more on track. I haven't had Aromasin so can't comment on that. I wouldn't be surprised if you got a reaction to Xgeva but i also expect it mightn't happen again. I think seeing a psych is great cos all the things you are too scared to say in front of your hubby and family can be aired then. Big hugs.
Dx 9/03 EBC
5/12 ABC bones-Herceptin,Tamox&Zometa
8/12 Liver mets-Abraxane,Herceptin&Zometa
6/13 Xeloda/Tykerb Xgeva
11/14 TDM1 Xgeva
1/15 Rads to tumour in head
2/16 Whole brain rads lepto. mets, continue TDM1
8/16. Navelbine, Herceptin
1/17 Neratanib Xeloda & Herceptin.

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Re: Seriously- How do you all do it?

Postby ruth1 » Tue Aug 19, 2014 7:53 pm

Sam, I have become very anti social too but I love the lunches we have here in Sydney with other ladies from the forum. The next one we're having is Saturday 13th Sept at the restaurant in Centennial Park. Yvonne is coming and Deb, Gabby, Elaine and Angela. Any chance you can join us??? I know its a long way to come just for a few hours but we are a good bunch and have a lot of laughs.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Seriously- How do you all do it?

Postby Janette » Tue Aug 19, 2014 7:44 pm

Sam,
It sounds to me like you are doing all the wise things. Seeing the Psych is a great start. Otis foundation stays are great and meant for those going through exactly what you are going through at the moment.

Aromasin is an aromatase inhibitor and a steroid I believe. It's more of an anti oestrogen than a chemo as such, but what is chemo (chemical therapy). I think hair loss can be caused by hormones or lack of them, but I might be wrong.

You have a life to live and enjoy hopefully for a long time yet. If you don't want to socialise that's ok and understandable. Hang in there Sam. :hugs:
Janette


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Re: Seriously- How do you all do it?

Postby horselover » Tue Aug 19, 2014 7:17 pm

Hi Ruth1 - yes-booked to see a psych next week- I have seen her before and she knows me well - here's hoping she can help me out a bit :angel: The Aromasin can actually cause baldness... so does that mean it is a type of chemo they have slipped me? I am pretty much having most of the sidies Aromasin and Xgeva can throw at you - My onc did say to give it time and that the Aromasin will settle. I did actually contact OTIS Foundation who have a bunch of lovely holiday homes for BC people to stay in and am going to go stay in one down the coast between dr visits at some stage next month- DH and I are also going to the LED ZEPPELIN revival this weekend at the State Theatre (love that building) in Sydney- so just coming on here and talking has helped cheer me up by reminding me that I DO actually still have a bit of a life and it is OK not to want to be social.
I so love this forum, you are all amazing. :grouphug:
sing like no one can hear you

dance like no one is watching



with love from Sam

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Re: Seriously- How do you all do it?

Postby ruth1 » Tue Aug 19, 2014 6:56 pm

Sam, I am still trying to find my new normal. Are you having bad se's from Aromasin? I know some people find it gets easier as your body adjusts to the drug over time.

I still think you need to find counselling support through this. I have been to see a senior psychiatrist today who works with the cancer centre. She has referred me to a survivorship centre attached to Concord Hospital. They do everything there - diet, support, exercise, the whole care package. It sounds really good so wondering if there's anything like that in Canberra? They tailor and monitor programs around individual needs so its not the one size fits all.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: Seriously- How do you all do it?

Postby horselover » Tue Aug 19, 2014 6:29 pm

OMG I am still wondering how you do it! You are all so very strong and inspirational- I actually have found myself thinking- What the hell am I going to do for the next however long I have? The side effects are not great- I don't know what to do with myself- don't want to visit anyone- I feel awful. Thinking I am still in shock- I dream of finding a new normal ...... god knows what that is going to be like-
Seriously still don't get how you all do it? It is easy to see how well others deal with it when its not happening to you- you kind of feel sorry for them and admire them from afar! My head is literally going loop de loop continuously- :bawl:
Last edited by horselover on Tue Aug 19, 2014 7:05 pm, edited 1 time in total.
sing like no one can hear you

dance like no one is watching



with love from Sam

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Re: Seriously- How do you all do it?

Postby Yvonne » Fri Aug 15, 2014 9:40 pm

After 6 years now with mets, my last scans (2weeks ago) showed more progression (again) and I started thinking ok, well, it's probably months now, not years. Back to where I was 6 years ago thinking it wasn't worth buying new ug boots for winter, my old ones would last the year they told me I probably had back then. But my onc still thinks I'm going to keep plodding along - she thinks I've got a couple more years at least, even now.
Yes, it's hard. But actually, it does get a bit easier - new norms and all that. I had given up my job, moved state etc, to wait to die. I've now been back at work (part-time) for 3 years and plan to keep on indefinitely, as I am really enjoying it. Yes, I'll be dead "soon", but what does "soon" mean"? And I'm doing what I want. I love working. I'm loving every single minute of my life. I really value all the time I am getting to spend with my family and friends.
I'm honest with my family - lots of jokes about how long I'm taking! I don't think I'll end up a burden to them. I'm happy to go to hospice when the time is right. There are things I've (almost) given up, eg sadly, I don't think I'll ever get to be a grandma, which is how I always thought I'd end up. But I think I can feel that I will be leaving my kids in pretty good hands. They are adult, and I know that makes an amazing difference to having young ones, but you do have time to set support systems in place to an extent.
I have no aversion to using anti-d. Haven't needed them as yet, but I am assuming that there will eventually come a time when I need to talk to someone and consider all those options. If it will help me (and therefore, indirectly, all my friends/family), I'll take it.
love
Yvonne
1999 Chemo, Radio, Mastectomy & Reconstruction. Oct 2008 Mets to lungs, liver, spine, adrenal glands, spleen. 6 cycles docetaxol. Now on Femara and Zometa. April 2009 - decided the liver mets weren't mets!! Changed from Femara to Tamoxifen after suspected progression. Feb 2012 now on Aromasin.

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Re: Seriously- How do you all do it?

Postby LuvMyLab » Fri Aug 15, 2014 8:12 pm

Hey Sam, I just wanted to say thank you for your honesty, very raw and moving. I also wanted to send you a hug. Sh!tty thing to deal with. I do like the post about miracles though. The ladies here will hopefully help you heaps mentally, gosh they are all so incredible. Keep Punch'n - My Dad always told me that. Each day is a new one. And well you never know, with all this money going into research maybe you can be cured one day soon. My wish for all of you. :hugs:

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Re: Seriously- How do you all do it?

Postby INTHEPINK » Fri Aug 15, 2014 12:09 pm

Hi Sam,
I have had ABC for +5 years now and life is basically back to a new kind of "normal". I have to have treatment once a month but life goes on. What "other" people don't understand is that the bills don't stop coming and food still has to be put on the table. I am so glad to still be working. It gives me a sense of worth, a distraction and means I can contribute to the household budget.
I also agree with Tigger. Re examine your life. We go on holiday as often as we can, are not so annal about super contributions and retirement and have fun. It is freeing :D Family & friends become more important, and I blessed to have a wonderful understanding DH.
Keep on keeping on - things will get better once the shock has passed!
Jane.
“What day is it?" It's today," squeaked Piglet. My favourite day," said Pooh.”

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Re: Seriously- How do you all do it?

Postby Tigger » Wed Aug 13, 2014 7:31 pm

I have re-examined my priorities quite a few times through this journey and have just done another "audit" and removed some things, reduced others. I am focused on spending quality time with my family, subtly preparing for a time when I can't be there, working at maintaining a good quality of life and balance in what I am doing. I am a Christian so I find a great deal of comfort in reading the bible and spending time in prayer and with my close friends.

Acceptance of the fact that our lives are most likely going to be significantly shortened is hard but once you do it is quite freeing. I always think that at least I have time to plan and prepare - to make the most of my life. Many people never get that opportunity. :D It all comes with time. It is always hard at the beginning and we all have times when it gets on top of us but for the most part once you have accepted it you are able to get on with life and enjoy it :)

I do make sure I take enough painkillers to keep myself comfortable or make sure it is at least bearable, if I am offered anything by the oncologist or nurses that make chemo easier I say 'yes' - I started off being very brave and trying to make it through without many drugs but now I just accept that the drugs make life much more worth living and take them :D After all, if a miracle occurs and I am healed I can always stop taking them! If not, I am at least as comfortable as possible. :hugs: :hugs: :hugs:

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Re: Seriously- How do you all do it?

Postby horselover » Wed Aug 13, 2014 9:23 am

Thanks Schooly and Tracey. I do meditate each evening and funnily enough had very few sleepless nights, so that is good I guess. I will really try to take it easy on myself. I haven't been back to netball since dx as I am kind of embarrassed- not to mention tired. Not sure if I want to keep playing at all. I will take my horse for a ride today.
sing like no one can hear you

dance like no one is watching



with love from Sam

Tracey Gibney
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Re: Seriously- How do you all do it?

Postby Tracey Gibney » Wed Aug 13, 2014 12:46 am

Sam I am coming up to 7 years with mets and I have reached a place of peace and acceptance mostly!! But it was a hard road initially, I was very anxious and needed quite a bit of assistance to get through it. I saw a psychologist for a couple of years but what really helped me the most was hypnotherapy and meditation. The type of meditation I practice is mindfulness meditation which is very much about focusing on the here and now. So I really concentrate on making the most of each day even if it is only involves taking the dog to the park and having a chat with a neighbor. I really try to limit the time I think about cancer to the day or so around having my 3 monthly tests and seeing my oncologist. I have learnt to limit the time I ruminate about cancer and my future because I really have no control over what is going to happen. I have made an effort to eat well ( I still have an occasional guilty pleasure) lose weight and exercise. So I actually feel better than I have in a long time. And lots of happy milestones have happened in the last 7 years that I am so glad I was a part of. Your family are still reeling from the shock of your diagnosis so give them time and I am sure you are not a burden to them. Be gentle with your self and just take on day at a time.
Tracey xxx
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance


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