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New to private group.

16 REPLIES 16

Re: New to private group.

Hi Girdre,
Thank you for your post ,
My apologies to everyone if I am posting to much on the forum you must be fed up with me all ready ,
but it's as if I have been propelled to Mars in a Rocket on my own ,been there 4 or so weeks and found another human being behind a very large rock to talk to ,
Girdre I am also taking this as a chronic thing also trying my best not to delve into the Internet and not wanting to know anything about % ,
I enjoy music also ,
Take care
Kindest regards
Marcelle X

Re: New to private group.

Hello Bel and Marcelle

 

This is a lovely group who welcomed me as I'm from Australia and there's not many support groups for secondary breast cancer.

 

i know what it feels like Marcelle to wake up and think OMG, it still happens to me, I was diagnosed straight to Stage 4 bone mets. I tad never heard of bone metastises, have no breast cancer anywhere in my family.

 

I hope your scan results are good Bel, after all the waiting.

 

Its hard to keep sane, walking I find is good, as well as lately I have been listening to music that I like.  Going out for hot chocolate is good too I find.  

 

It's a terrible disease, but I have read that it's now "chronic" and manageable.i hope so for everyone.

 

xxx

 

 

 

Re: New to private group.

Hi Bel ,
i am sorry to hear your news and that you feel isolated this time round and have not had support from the BC nurses.and hope you will get to know more soon ,
I know little to nothing about treatments and only a wee bit about my own ,
Hope today finds you feeling a bit better ,
Kindest regards
Marcelle X

Re: New to private group.

Oh bel
.my heart goes out to you as you are going through exactly what I did last October on being given the dx of secondaries after eleven years ...somehow by then we honestly believe we have beaten it and have moved on.
I retired, moved house and intended grow old disgracefully spending the kids inheritance on travelling etc but life delivers these blows and we have to cope with whatever treatment plan we get given.
It's harder this time round as at primary ..I seem to almost fall over breast cancer nurses and support ....hence the importance of this website for help kindness and support.
I suppose it does get a bit easier but there are always dark days and at night when you have too much going on in the head to sleep.
I'm not going to say chin up or keep fighting as I got fed up with all that too.
Hugs Carolyn xxxx

Re: New to private group.

Hi all

i saw the oncologist today, scan shows bone mets to spine in two main places, further spread to left ovary and to my sternum.

treatment of bone strengthening injections and hormone injections with one lot of radiotherapy to lower spine.

Not sure what I was expecting but came away a bit numb, no real details, follow up when I have radiotherapy and that was it!

i feel very isolated, at my first diagnosis 11 years ago the immediate support from bc nurse was fantastic, making sure I understood everything, but this time I haven't had any support apart from my family, and I don't feel that I know enough of what is going to happen to me.

Is this normal? 

Onc did say keeping chemo in reserve??? What does that mean. 

Not sure where to turn now, should I contact bc nurse or is this normal practice,

 

really appreciate ate advice and whether this treatment plan is normal. 

 

Thanks all. Xx

Re: New to private group.

Hi all , and Carolyn and Karen ,
Karen I agree with you just a wee text would be something , but I think I was rather harsh the other day as on the other side some friends and others I would not expect to get in touch have ,
Carolyn I think it is like what you were saying ,getting used to " new life " and I know I would have been the one to stand off ,
I don't want fuss or pity I just crave normality but maybe I have to get used to that " this " is the new normality and enjoy everything the same as before ,
This forum is good place to be , thank you for being here for me ,
Regards Marcelle

Re: New to private group.

Hi marcelle

I completely understand about your sat nights me and my husband are going through the same thing I don't know if it because our friends don't know what to say to us or think we will be different people but I just wish they would ask

Sending big hugs

Karen xx

Re: New to private group.

Hiya Marcelle and bel
Hope u are both settling down with the "new life" ..it's very hard but in time you have to adjust.
Friends and family mean well but they just don't know what to say or do really but here on the secondaries ....we all swim in the same direction and understand fears, side effects and emotions.
Carolyn xxxc

Re: New to private group.

Hi Bel ,
Thinking of you hope all is ok
X

Re: New to private group.

Thank you for your support and advice, it is very much appreciated. Feeling slightly calmer tonight, just waiting for tomorrow now to get the full picture. 

 

Will update tomorrow when I know more.  

 

X

Re: New to private group.

Welcome, Bel and Marcelle. Sorry you have had to join us, but you have both ended up in the right place for support, laughs, some crying together, then cheering up again! Hope you both get on with your treatments. Bel - I hope you have a better meeting than expected tomorrow, and that they come up with some good treatments.

 

Hugs. Barton.x

Re: New to private group.

Hi
I am also a new member of the group and thank you for allowing me to join ,please excuse my spelling and punctuation ,

Bel , I know where you are coming from it is so hard going through it and getting on with life and wanting to enjoy everything in life to the full
,i wake up fine and then a few seconds later OMG .
it was so hard telling the kids as I don't want to upset them .


I was diagnosed in 2008 with ILC at 54 , all seemed well ok ,but now have very recently found I have had a recurrence in my colon . This was after I was thought to have Crohn's disease but on the confirmation of the biopsy it was a recurrence .

I have started anti oestrogen treatment to start , and have had a pet scan so I have to wait see the oncologist to find out more .

I am so pleased in finding this group , I like the other posts find the emotional side difficult as I have I think been in delayed shock , finding out just before I went away on Holiday where I really had an Ab Fab time and most days enjoyed it to coming home to the realisation that I can't kid myself and the pickle I'm in is real .
I too want to live through this and enjoy but some " friends " have seemed to back off
I might have done the same to them if they were in my position and I am trying to understand , as after all I am the same person as I was four or so weeks ago before I knew,
To keep my mind going I am starting to learn bridge , but what I really want to do is is to go out normally for Richard and I to go with friends on Sat nights as usual have a G & T and a good old laugh but some of my friends have not even texted ,
I have promised myself I will try and keep smiling through this though I know that is going to be hard .
I am sorry that we are all in this place but at least there are people who understand ,
Take care
and thank you xx

Re: New to private group.

Hello Bel welcome to our forum you have found the right place to be. You will find lots of support and fun to take your mind of the parasite that has entered your body.

 

You will feel all over the place right now but you seem to have a medical team that are on the ball and I am sure when they decide what treatment they put you on you will feel alot better. It takes time to come to terms with it all but don't let it rule your life live for tomorrow and make everyday count. You sound as though you have a lovely life with your small holding enjoy it. Remember you will be living with SBC not dieing from it.

 

All the best with results and love and (((hugs)))  xxx 

Re: New to private group.

Yes headspace is excellent for meditation and managing those anxiety thoughts.

 

welcome

 

!oijanxx

Re: New to private group.

Hello bel
Firstly welcome to our family ..loads of help and kindness here to keep you a little sane !
Another case of bcc coming back after a long time and biting us on the bum just when we had moved on away from it.
I had eleven years from primary to secondary and it really caught me out after so long .
But ..we are strong women and will give the cancer some welly!!
Stay with us ..we love our new ladies joining us.
Carolyn ccc

Re: New to private group.

Good morning and welcome

I am 47 and diagnosed with secondary bc to bones X hips so can definately understand where you thinking

All the emotions you are feeling are all normal and think me X some of the ladies on here felt the same , once you have seen your oncologist and got your treatment plan you will feel better ( honest)

As for sleeping I do headspace it a app for meditation it only 10 minutes long but helps clear your mind before sleep so the demons can't jump around.

Good luck and please keep in touch there is so much support on here I went from an emotional wreck to feeling a lot more positive

Big hugs

Karen xxx

New to private group.

Thank you for accepting me to the private group. 

i had my initial bc in 2005 at the age of 44, recurrence in 2011 and last week after three months of scans and tests I was told it had spread to my spine.

 

oncology appointment tomorrow so I guess I'll know more then. It's all the waiting that drives you Madame builds up the anxiety, I've had 5 scans each a couple of weeks apart then a week for results, only then to be told I need another scan, which until the last petscan were inconclusive! 

 

Im very nervous about tomorrow as the bc nurse says they will run through the whole scan and treatment plan, but sort of implied that there was more to it! But wouldn't elaborate.

 

i have read through lots of threads and there are some fantastic supporters here and advice givers, I think this forum will help to keep me sane over the coming weeks, months and years.

 

A bit about me, I'm now 55 moved to our dream home 6 months ago. It's on a small holding with a variety of animals, my husband of 36 years and two of my four children, who are 19 & 23 live with me.  The two older boys (30 & 34) live locally have partners and I'm expecting to be a grandma within a month! First grandchild so very excited and something positive to look forward too!

 

i run my own business so I am trying to work out how to manage that over the next few months too! It's not the sort you can leave and come back too! So stress is high with this problem.

 

Any advice on how to keep sane over the first few weeks would be very much appreciated. Sleep is a problem too, although yesterday I was given two weeks of sleeping pills by GP as I wasn't sleep more than a couple of hours a night. (Last night was. Slightly better managed 5 hours! So feeling slightly more human today.)

 

sorry this his is a long first ramble, hope to hear from some of you soon, and in the future I hope that I will be in the position to help others with advice and support. 

 

 

Bel

x