Breast cancer
posted by Avril
31 August 2015

Calling Stage 4 gals

Last reply: 25 February 2016 09:35

Hi All Stage 4 Ladies,
Anyone out there and how are you?
I was diagnosed with bone mets May 2014[all usual treatments] and wondering if there is a fellow anxious Molly out there?
How are you coping?
At the moment Bacardi and zanex help me! Less time consuming than juicing!
I know there were other ladies out there-Ellie, Lemrac, Deefed, Veronica,Mary B and Debbieb.
Would love to hear from someone/anyone!
Avril.

28 comments

Comments

commented by Irish Cancer Society
08 September 2015

24 November 2015 10:33

Hi Avril
I am sorry to see that you have not received a reply yet.It would be nice for you to chat with others.I am wondering if you know about other ways of making contact with ladies with bone secondaries such as

• Speak with one of our Peer to Peer volunteer who has bone secondaries.
http://www.cancer.ie/how-we-can-help/support/survivors-supporting-survi…

• Attend living life programme for those with secondary cancer
http://www.cancer.ie/how-we-can-help/support/living-life-programme

• Attend our conference on the 18th/19th of September 2015
http://www.cancer.ie/living-well

If you would like to discuss any of the above please feel free to phone our Nurseline at 1800 200 700 Mon-Thurs 9-6 and Friday 9-5.

Kind regards

Cancer Nurse | Irish Cancer Society.

commented by MaryB
21 September 2015

21 September 2015 19:13

Hi Avril, Sorry you haven't had any replies. I rarely look in here as there seem to be very few stage iv people on the boards. I should warn you now though that I'm a bit of a betty downer, one of the reasons I don't post here. I'm getting by but it ain't easy. I'm three years out now and my prognosis was five years so I try to live in denial! Xanax helps but I haven't been able to find an anti-depressant that doesn't give me sick headaches etc. Onc. helpfully said that maybe I wasn't as depressed as I thought I was... I still feel like a rabbit caught in the headlights. I would love some happy pills.
I came on here because I want to find out about travel ins for stage iv bc. I haven't had a holiday since diagnosis and as I'm currently off chemo I thought we might go to France for a long weekend. Onc. said as long as there was a major cancer hosp. nearby I could travel. Not sure if I want to go but hubbie is very keen. It's been a tough few years for him too and though he goes away with his mates he would like to have a holiday together. I think it's so hard for our families to deal with all this.
So anyhoo where are your secondaries? How do you cope? Are you still able to work and do your normal stuff?
Hope you are feeling ok today
Hugs x

commented by Avril
22 September 2015

22 September 2015 17:34

Mary B,
Was so delighted to hear from you!
Go on hols.
I did last July and just had usual health insurance and went hoping Laya would be there if anything went wrong. Foolhardy I know. But thankfully nothing did happen.
I am not working as had op on my spine last year so took early retirement. I was 49 but knew in my heart that I would be unable to return to work.
I never asked my oncologist for a prognosis-too scared to ask. I am not a brave soldier.
My aunt was diagnosed with breast cancer in her late forties and her oncologist then told her she had 10 years to live.
She is 71 now! She lives in Perth and told me that she bumped into him at a concert at the weekend and he looked amazed when he saw her! She reckons he thought she was long gone!
I am on monthly infusions of Zometa and also have Faslodex shots. Like you feel very down a LOT of the time.
Have not mastered the whole Live in the Present thing.
I have one daughter,10 years old and my heart breaks at the thought of leaving her.
I so hope you get to France.
Apologies for such a rambling message.
Avril x

commented by Maria 1983
20 October 2015

20 October 2015 16:04

Have just recently joined the community online and wish to let you know I am also Stage 4 since 2013. Original diagnoses was 2008. I am on Zometa every 4 weeks and tamoxofin daily. It sure was a shock to the system. But live each day as it comes with a positive attitude. Hope you are feeling well.

commented by lemrac1
02 November 2015

02 November 2015 00:11

Hi. Lemrac here again! I couldn't sign in and have just reset my sign in etc.
I was away for the summer with no Internet! But I'm still alive and kicking.
I've had a few setbacks over last few months with different treatments either not working or not suiting but oncologist still says he has lots left. Thank God. Had to have my hip and femur pinned due to a potential fracture and have been on crutches for past 5 weeks. Had 2 clots in my lungs after the surgery! Needless to say my mood has plummeted . I'm hoping that once I'm back on my feet and back to work that life will settle again.
I've found a fantastic website mbcn(metastatic breast cancer network )where women tell their stories when they reach 10 years post recurrence. There are lots! Hope I don't sound too down in dumps.

commented by Avril
09 November 2015

09 November 2015 20:27

It was great to hear from you!
I had not checked the website in ages as I had almost given up on hearing from others!
Avril

commented by Avril
09 November 2015

09 November 2015 20:37

Brilliant to hear from you.
Am sorry to hear you have been having hassle with hip and femur.
I too had a clot issue and had to inject with blood thinners[I actually forget the name!] but finished now. Funny I forgot to ask oncologist about those darn clots on my last visit!
Thank you so much for that web address.it is good to hear good stories especially when things are tough. My latest issue was with problem headaches but brain scan came back ok.
It's all fun and games!
Avril

commented by Avril
09 November 2015

09 November 2015 20:40

Lemrac
Hope you will soon feel a lot better. It takes fortitude so my onc thinks...................
Avril

commented by lemrac1
10 November 2015

10 November 2015 01:03

Hi again,
Fell off the bed this morning reaching for my crutches! !!! You couldn't write the script! Back in to hospital for xray. .All clear and can throw away the crutches now. Thank God.
Finding the whole 'mood'thing difficult at the moment. ....The slightest thing sets me off....either crying or completely losing my temper. ..... family on edge with me . However had great news on Friday. .mets on lung stable and liver mets reducing. ......think they're must be a God after all.
Avril, my onc says there are new treatments for mets every week. Don't ask for prognosis. .....is only an estimate based on numbers. ....We're not numbers. Each cancer and each person is different. ..expect to be the best percent . Please God you won't be leaving your daughter for a long time yet.

commented by Avril
16 November 2015

16 November 2015 20:36

Well Lemrac ,
Know how you feel about crying/losing your temper!
Similar situation here.
As I had an op on my spine[bone mets.] I had to retire a year ago, at the ripe old age of 49!
Glad that things are on the up for you with lung mets. stable and liver mets. reducing.
Am genuinely happy for you.
I had brain scan last week as was feeling dizzy and hence freaking out about brain mets.
Thankfully it was ok. Have usual scans on Thursday.
The joys!
Avril

commented by Avril
16 November 2015

16 November 2015 20:47

Lemrac1,
Have just realised I am repeating myself re. brain scan and having had to retire!
I will blame chemo, zometa and faslodex.
My brain is truly fried.
Apologies!
Avril.

commented by lemrac1
22 November 2015

22 November 2015 01:59

Hi stage 4s!
Back at work this week and as predicted head is nearly back to normal . I had too much time at home to worry and get stuck in dark thoughts. I'm week in week off which is the best of both worlds and also love my job. .primary teacher.
Not sure how any of you are fixed work wise ..... but definitely recommend being involved in something to keep head busy.

Hope you are all okay. Keep up the prayers.

commented by Avril
01 December 2015

01 December 2015 14:25

Hi Lemrac1,
Think you are so brilliant to be working!
Coincidentally I was also a primary teacher. After spinal surgery, the radiation and chemo I took the decision to retire early but I so agree with your thoughts on having too much time to think dark thoughts at home.
However my energy levels never really returned-Don't know if it is the monthly treatments of Faslodex and Zometa?
Avril.

commented by lemrac1
24 January 2016

24 January 2016 00:07

Hi avail.
Mixed up in where to post to you. Anyway delighted brain scan clear......think that's the scariest bit! Very tired at moment and want to slap husband today who said if I did more I might have more energy!!!

commented by evelyn123
02 February 2016

02 February 2016 12:06

Hi Avril, I too was diagnosed with stage IV breast cancer in 2014 (June). I am now 34 and I have 2 small children. I find the tiredness the hardest at the moment. I had 6 cycles of AC chemo which I finished in Nov 14 then in March 15 I had 10 sessions of radiotherapy on my lower spine. Since that I have been on hormone therapy and I am doing pretty well. I have Mets in my spine and hips so sometimes the pain is real bad but mostly I have a life and lucky can still work part-time approx 10 hours a week which keeps my mind active.Hope this helps.

commented by evelyn123
02 February 2016

02 February 2016 12:07

Totally agree as I work about 10 hours a week and it is enough to keep me busy.

commented by lemrac1
05 February 2016

05 February 2016 23:16

Hi Evelyn. Wish you didn't have to join this group. ...you're far too young. Hope you are okay. Xx

commented by Avril
10 February 2016

10 February 2016 13:48

Have not been on line for ages and just read your post.
Know what you mean about killing hubby!
I think my doctor mentioned something about walking 10 miles?!
Dream on..........

commented by Avril
10 February 2016

10 February 2016 13:52

You are so young-And also hope you are o.k..
Girls,how do you manage work.I feel such a fraud-genuinely have no energy and I think whole mental thing getting to me too. Latest thing is feeling panicky when out alone.Feel such a wuss.

commented by lemrac1
15 February 2016

15 February 2016 23:22

You're not a wuss! I'm usually knackered..... spend a lot of time on the couch! Work is for my head. ..also money. ...2 adult children living at home. My counselor told me that huge resources going into stage 4 as it's a growing group. ..so there is done positivity with our diagnosis.

commented by Avril
17 February 2016

17 February 2016 18:41

Lemrac,
Just read your post!
Am in the dark thoughts mode!
Made what I know to be the fatal error of reading up info on the internet-yes,you have guessed correctly-Statistics.NEVER A GOOD IDEA. Great to hear you are in good form.I just think you are brilliant.

commented by evelyn123
17 February 2016

17 February 2016 22:34

HI ladies things have been a little crazy here. Oh I have no choice but to work for financial reasons however I am going to try take a few weeks off really need the rest and I seem to be giving out to the kids every day due to tiredness so that's not good since I try to make every day count. Ignore statistics they would drive you made. Enjoy the good days and just get through the bad ones. Love to all.

commented by Avril
18 February 2016

18 February 2016 20:14

Do not worry about giving out to kids!
We are all at that!
Hope you will get that time off.

commented by lemrac1
18 February 2016

18 February 2016 23:29

Avril. There is a very good article by Stephen J Gould called 'the median is the problem ' . Is about the bell curve of any statistic. He was diagnosed with pancreatic cancer with an awful prognosis. He looked at the curve where the median person only lived for whatever number of years. Some fall of the curve before the middle. ...but there are others way down the other side. ...and some not included in the curve at all because stats only ever civet 8a certain period. ...usually in 5 year cycles. He decided he could be one of those. ....He lived for 20 years and died of something else. We all have to see ourselves on the far side of that curve.
Anytime I read something positive I copy it. .I'll try post some.

commented by Avril
23 February 2016

23 February 2016 09:51

Lemrac, I am so grateful that you took the time to reply to me especially as I know you are working.
I had got myself into a dreadful state reading stats. all from reliable websites.
Most said 2-3 years[only 20% alive after 5 years] and of course I was diagnosed with stage 4 two years ago this May just over two years after original diagnosis.
At times the internet is a fabulous source of all information but reading various articles can leave you so upset.
Actually find this to be the only website that seems measured and sensible.
I think being at Stage 4 is a lonely place.
Was at a patient conference last week and out of the entire group only three people in a similiar position.
I know I should feel happy for the others but felt like crying. Left it early like a bold child!

commented by evelyn123
24 February 2016

24 February 2016 10:03

Avril, have a look at this. https://www.youtube.com/watch?v=2xnk8retdnI One of the ladies describes timelines very well. It's the lady with glasses it really helped me to hear it. I sometimes get annoyed when my doctor says every patient is different and we just don't know but that is so true. That is really hard to live with though some days the uncertainty is so difficult. I am still working I haven't managed to get time off yet but hopefully I will in the next few weeks. Things are crazy in work and I don't want to ask for the time off just yet.Got out for a small walk this morning and I feel so much better.

commented by Avril
25 February 2016

25 February 2016 09:15

Evelyn,
Thank you so much for your reply.
Hope you get that time off very soon! I have to force myself to walk!! Am a lazy lump!
Anyway gals apart from this site no more surfing the net on cancer related prognosis figures for me. Thinking of you all.I find this site a wonderful support.

commented by Avril
25 February 2016

25 February 2016 09:35

Evelyn,
Did watch that youtube suggestion.
I agree.The lady in the glasses was excellent-you just try to keep doing the usual things whereas sometimes you feel you should be ticking off items the bucket list[Oh how I hate that term!]Or writing a novel!!!!!

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