Why not join the Living with metastatic private group? Access group via the link here.
My story
Matrix56
Member Posts: 6
Whilst being scanned for Spondolythesis, they told me there was an issue with "other bones"? My GP rang me next day & insisted I see him immediately with my husband. Bit scary thinking spondolythesis an issue, not expecting to be told you have cancer of the bone,
from where?, a minute spot that was in breast.
Upon further investigation, lumpectomy, diagnosed with metastic breast cancer, one lymph node affected. Head spin for next 3 weeks trying to figure out what, when, how, but most of all WHY ME! Why US!
2 years previously I had a mammogram that had a shadow/inconsistentcy, but told by a cancer specialist that there was "nothing there, keep eye on things". There was nothing there? We checked, even my GP had trouble finding it when it was there, to think something so small can cause so much havoc. Destroy so many lives.
Diagnosis. Estrogen & Progesterone receptors - positive, Hormone receptors - negative. HER2 positive
Oncologist tried Arimidex, didn't work, Taxol, didn't work, omg what is happening if these won't work, it's in my spine, ribs, pelvis, arms, feet, knees, shoulders, come on something's gotta work! Even had massive reaction to bone strengthing injection. Get ready for big guns, had a powerpoint put in ready for a fight, tried Xeloda tablets, YES!! worked.
We have success, after 12 months treatment, then 4weeks intense radiation, scan showed vast improvements. Hot spots not so many, yeah! Anyway that was from diagnosis 16th June 2009, I have had 10 months off Xeloda from May 2012 to January 2013 when tumor markers went awall again. Since then I have been on Xeloda, whilst there is no obvious side effects for me, there is hidden ones.
Mentally, lists of changes, physical not so much. People see you & know that you were diagnosed with a bad disease but they see nothing wrong with you & think your telling porky pies! So upsetting. Feel like wearing a shirt that says "You don't know me so don't judge me" or "if only you had X-ray glasses, you'd understand - it's not a pretty sight"
I guess I'm lucky, I was able to walk away from work & stay at home & recuperate and hubby has been able to have time off work and take me to as many places as possible around Australia in our caravan, the plans we had for after we turned 60 have all been brought forward. It has been hard on our two sons, accepting Mums illness, were a pretty close family unit, but as I tell them all the time, Love will always be there, even when I'm not. Acceptance is easy for us that are diagnosed, it's the ones left behind that have the difficult task, especially when you have been together from a young age
Anyway, stress time is upon us again. Next week I have scan number 8 - have feeling that this time we might not get as good as want, have cracked ribs 3 times in 2 months - we're kinda expecting badish news but hope for good, what will be, will be!
Let's deal with it when we know more!
from where?, a minute spot that was in breast.
Upon further investigation, lumpectomy, diagnosed with metastic breast cancer, one lymph node affected. Head spin for next 3 weeks trying to figure out what, when, how, but most of all WHY ME! Why US!
2 years previously I had a mammogram that had a shadow/inconsistentcy, but told by a cancer specialist that there was "nothing there, keep eye on things". There was nothing there? We checked, even my GP had trouble finding it when it was there, to think something so small can cause so much havoc. Destroy so many lives.
Diagnosis. Estrogen & Progesterone receptors - positive, Hormone receptors - negative. HER2 positive
Oncologist tried Arimidex, didn't work, Taxol, didn't work, omg what is happening if these won't work, it's in my spine, ribs, pelvis, arms, feet, knees, shoulders, come on something's gotta work! Even had massive reaction to bone strengthing injection. Get ready for big guns, had a powerpoint put in ready for a fight, tried Xeloda tablets, YES!! worked.
We have success, after 12 months treatment, then 4weeks intense radiation, scan showed vast improvements. Hot spots not so many, yeah! Anyway that was from diagnosis 16th June 2009, I have had 10 months off Xeloda from May 2012 to January 2013 when tumor markers went awall again. Since then I have been on Xeloda, whilst there is no obvious side effects for me, there is hidden ones.
Mentally, lists of changes, physical not so much. People see you & know that you were diagnosed with a bad disease but they see nothing wrong with you & think your telling porky pies! So upsetting. Feel like wearing a shirt that says "You don't know me so don't judge me" or "if only you had X-ray glasses, you'd understand - it's not a pretty sight"
I guess I'm lucky, I was able to walk away from work & stay at home & recuperate and hubby has been able to have time off work and take me to as many places as possible around Australia in our caravan, the plans we had for after we turned 60 have all been brought forward. It has been hard on our two sons, accepting Mums illness, were a pretty close family unit, but as I tell them all the time, Love will always be there, even when I'm not. Acceptance is easy for us that are diagnosed, it's the ones left behind that have the difficult task, especially when you have been together from a young age
Anyway, stress time is upon us again. Next week I have scan number 8 - have feeling that this time we might not get as good as want, have cracked ribs 3 times in 2 months - we're kinda expecting badish news but hope for good, what will be, will be!
Let's deal with it when we know more!
Tagged:
0
Comments
-
My goodness,you have been through so much in the last few years.I was sad reading your blog but then inspired by your courage and determination to stop cancer in it's tracks.How stressful to be going for scan number 8 -can't imagine having to front up for that.Where ever we are in this bc journey,we just have to deal with what's thrown at us -what choice do we have?I've been on this crap ride twice.First time in 2003 and then again in 2010-both times it was early bc so am lucky in that respect.Although sometimes,I feel like a ticking time bomb.You have the same mantra as me - prepare for the worst but hope for the best.I'll be wishing you luck for your next scan and hoping for a better result. Big hug, Tonya xx
0 -
What an inspiring positive person you are. I'm not sure I could have the same upbeat attitude going through what you have had to endure. We all have to live day by day through this journey and do the best we can don't we. I was stressing yesterday about the unknown results of a chest X-ray that my GP has asked me to come in and discuss but when I read your post I thought to myself, what am I whining about. From now in I'm going to just zip it.
One day at a time is my mantra. Love your profile pic by the way. I used to have the words "Oh Well" on my wall at work. Think I'll put it back up
Wishing you all the very best with you treatment and sending you big hugs too.
Love Janey xxx0 -
You are such an upbeat positive person, its just no fair is it.
Unfortunately life just seems to throw crap at some of us and we just have to learn to deal.
I love that you have bought your retirement plans forward, that is an awesome thing to to do.
Wishing you all good things
Donna
0 -
You are such an upbeat positive person, its just no fair is it.
Unfortunately life just seems to throw crap at some of us and we just have to learn to deal.
I love that you have bought your retirement plans forward, that is an awesome thing to to do.
Wishing you all good things
Donna
0 -
Thank you for comments,
Sorry for the delay in this but life gets crazy sometimes and we get side tracked. We'll the good news is I have no great changes, except for the broken rib, again, that's three times now, same rib, so they are going to up the vitamin d - will see if that helps, bones just not as strong as should be, do everything take everything - rattle daily & and they tell you to take more - aaaahhhh. The bad side of the news is that there is slight enlargement on spot on spine. But it's only a slight - yeah well I've heard that one before too. So we solder on till next round of whatever. In the meantime I am going to my sons wedding! At end March. Something I have been looking forward to then I'm going on a holiday again I think, (holiday from this crap I got dealt) lol. Anyway thanks for taking the time to read. Talk to you all again soon0 -
Have moved this to group. Oops. Just learning how this one works. Darn auto corrective. Gotta check it
0 -
Always good to have something special to look forward to.
I too have bone mets. Diagnosed with secondaries just over two years ago. Have tried all hormone tablets, no success, radiation and also samarium injection. Have monthly bone strengthening injections.
I have just commenced my second cycle of Xeloda and am hoping for a reduction or at least plateau of markers.
I must say I have experienced similar comments as you mentioned in your original post. I ran into someone at a shopping centre I hadn't seen for some time who passed the comment "so stories of your demise have been greatly exaggerated"
People have no idea of what is going on inside and just because I haven't lost my hair etc. this time doesn't mean I am recovered.
Breast Cancer in UK have a secondary breast cancer awareness day on 4th April which I think is great to increase awareness of secondary illness.
Good luck with the wedding, hope it all goes well!!!0 -
We'll I made it to my sons wedding, just. My Gp said what was I worried about, was there any doubt that I wouldn't be there? Of course there was, I got diagnosed with a kidney infection 4 days before the wedding, it was pretty bad, but the antibiotics kicked in just in time.
Everything went off wonderfully for them, I only had to look at my beautiful boy for him to understand my thoughts. He just knew that I wouldn't let him down.
I now have a new goal to aim for. That is to have a wonderful holiday with my two brothers, their wives and my husband. We plan to fly to Hawaii and hop on a cruise ship to sail back to Sydney via Tahiti, in September. I am oh so looking forward to it, as we haven't had a sibling holiday together since we were little.
I had to stop Xeloda whilst I was on antibiotics for three weeks as it was really hard to shake the infection, they threatened to put me in hospital if it didn't get better soon, thank goodness it worked. It was a wording time, was I going to get over this bug and how long was it going to take. Oncologist was adamant that all was good, but you just get that bad feeling deep down, just can't help it I guess, it's in our DNA to worry.
Sammy, I only just noticed your comments, sorry but I guess you can understand how busy it's been for me the past few weeks. Two weddings - my sons and my nieces three weeks later. Thank goodness for a bit of Valium to give me a boost. Glad to hear that all is good with you, the bone strengthening injections are great, if you can have them, I reacted really really bad to the first one, so they had to stop them for me, now it's a daily tablet, but have to change brands from time to time as body builds up a resistance to them and they make me sick.
But hey what would be the fun if I didn't put a curve ball into the lot every now n then. They always hold their breath with me when they change meds. I like giving them a run for their money, so to speak.
I know how you feel about how people treat you, you don't have a physical disfigurement or tubes sticking out or hair loss, but bloody hell you feel like crap on the inside and your scans are road maps with stop lights everywhere, but what do they care, your normal looking and making it up, oh if only! I have a mother that still thinks there is absolutely nothing wrong with her (baby) daughter, I understand that it's hard for a parent to accept that there is something wrong with their child, but when I say no I'm confined to bed I mean it, I can't take you to the bank to get some money for you stick under the mattress. Lol. One day she will comprehend, I just hope it's sooner rather than later.
.
I hope you had a good day on 4th April. Secondaries always get looked over when it comes to a lot of things,
To the rest of you girls, thank you for the upbeat comments, they mean so much and are appreciated, I am no one special, I am just like the rest of us with secondaries, fighting the fight, trying to hold it all together, staying as positive as possible for as long as possible, so setting little goals is good. Good luck to you all. May we all live long and give me all a run for their money!!! Stay strong0 -
Sammy, I only just noticed your comments, sorry but I guess you can understand how busy it's been for me the past few weeks. Two weddings - my sons and my nieces three weeks later. Thank goodness for a bit of Valium to give me a boost. Glad to hear that all is good with you, the bone strengthening injections are great, if you can have them, I reacted really really bad to the first one, so they had to stop them for me, now it's a daily tablet, but have to change brands from time to time as body builds up a resistance to them and they make me sick.
But hey what would be the fun if I didn't put a curve ball into the lot every now n then. They always hold their breath with me when they change meds. I like giving them a run for their money, so to speak.
I know how you feel about how people treat you, you don't have a physical disfigurement or tubes sticking out or hair loss, but bloody hell you feel like crap on the inside and your scans are road maps with stop lights everywhere, but what do they care, your normal looking and making it up, oh if only! I have a mother that still thinks there is absolutely nothing wrong with her (baby) daughter, I understand that it's hard for a parent to accept that there is something wrong with their child, but when I say no I'm confined to bed I mean it, I can't take you to the bank to get some money for you stick under the mattress. Lol. One day she will comprehend, I just hope it's sooner rather than later..
I hope you had a good day on 4th April. Secondaries always get looked over when it comes to a lot of things,0
