Why not join the Living with metastatic private group? Access group via the link here.
Faslodex / Xeloda / Ribociclib with Letrozole
Comments
-
@FYONA1 I do, when I first found out on October 31st, Halloween, how fitting, I thought I was going to die soon, I really knew nothing about metastatic breast cancer. I still have bad days and nights, but I made a choice to live and enjoy whatever time is left to me, if you can't get past these feelings maybe you should ask your doctor about a mental health care plan or just talk to the nurses on the bcna helpline. I live alone, so if I fall to pieces I am up the proverbial, without a paddle. There are a few of us on here that have been living with this for as long as 10 yrs I believe, truly, life is a lottery, we might die from something totally unrelated to our cancer, live and enjoy as much as you can and don't be afraid to ask for help if you feel you need it. Also, kick scream and cry if you feel like it, Sending you love and calming thoughts. xxooxx1
-
Hi @FYONA1, I am going to jump in here if you dont mind, you ask about negative thoughts and how long to live and yes, that is all perfectly normal and natural, well how long is a piece of string? no one and I mean no one can predict how long we are going to live, in fact my own oncologist has not given me a prognosis and nor do I want one, as you mentioned its very early days and of course all of this is flooding your mind, please trust me, it will and does get better, its always there lurking, but as the days pass and you get into your treatment plan it will get easier, I am 5 years as I said since my diagnosis and I know there are ladies here who are 10 years plus on, as for your hair and if you lose it then you will stop the treatment well that is something that is a very personal decision, but please give the ribociclib time to adjust to your body, my own hair has thinned a little but is not obvious to anyone, my hair is cut and shaped short, before in my younger days I have to say I was very vain about my beautiful long blond hair and was very sad that it had to go, however that passed, it did grow back feeling as you do now is how we have all felt, and yes like @JuMuKu, I see/talk to a pyschologist every month, I have a McGrath Breast Care Nurse and a support group I attend once a month, and although most of the ladies there are early breast cancer survivors they have welcomed me and made me feel very special, as I mentioned before you are on the best treatment, I dont even qualify, but thats life, it is what it is, be kind to your self, be gentle, have a good soul cleansing cry, have a bath put on some candles, have a massage, do what ever it takes to put you in a good place physically and mentally,
I understand your pain and feelings of negativity, but please if you only take one thing from this message it is that you are not going to die today, tomorrow next month or even next year, we have the best in breast cancer treatment in the world,please take on board all the support offered to you, discuss your feelings with your gp, you dont mention if you have a husband or partner, how are they coping, men like to fix things and this is one thing that they cannot fix, people do not know how to respond to someone who has been given the diagnosis we have, can you arrange for a short holiday, the otis foundation have some lovely places all over australia where you can stay for up to 4 or 5 nights you do not have to take anything, everything is provided free of charge,perhaps you need to take some time out to try and put all of this in perspective, either alone or with someone special, please my dear, just one day at a time, have you seen the videos that several women made last year about dealing with their metastatic diagnosis, they range in ages from late 30s to early 60s
in fact you might see me there!!!,so, thats it for now, just know that we are here for you, to encourage you, to cry with you and believe it or not laugh with you -4 -
Hi @Kattykit,
I too am pretty much of a loner, its called being an introvert Im told, I enjoy my own company and need a lot of me time, and yes like you I found it very very hard and still do to ask for help,however there are services out there to help us and I look at it this way no one has to go through this alone, bcna have am amazing program for women with mets, its a counselling service which you can utilize by ringing the 1800 number and at a time convenient for you a pyschologist who is trained in speaking with and helping women in our situation, I have used this service several times, they ring you in the privacy of your own home via telephone and will chat with you about anything, this is also available to partners as well, its somethinhg that I found very helpful, the women who you speak to are simply amazing, very compassionate and what is more important this is their area of speciality and "they get it", so if you feel that this might be for you give bcna a ring, many years ago anyone with a cancer diagnosis was very isolated and it was a subject that was not talked about it was "womens problems" and was hush hush, we are so fortunate now that we have this incredible network available to us,I am also fortunate that I have the services of a community nurse who comes to my home to give me my 6 weekly Xgeva injection to help with my bones, I also have the services of a cleaning lady once a fortnight, this was arranged by my McGrath nurse via the local hospital, I just make a co-payment,and its the best thing to happen for me, due to fatigue and being unwell as well as hand and foot syndrome from the oral chemo I was just getting more and more depressed about not being able to do my housework,and my partners offer of doing it himself well that was never going to work, thank goodness I have a dishwasher, bless him he meant well, but to have this lady come once a fortnight and do all the vacuming and wet areas and then wash all of my floors is just so good for my mental health,I have learned to live in the moment, and do not sweat the small stuff I find peace and contentment in the most simple of things, but all of that takes time,I have my pyjama days dont get me wrong, I have earned them, and when it happens I do not feel guilty and just say, this too will pass, and as you so very aptly put, life is for living, we certainly dont know what tomorrow will bring,
A big cyber hug,
wendy551 -
Thanks @wendy55, I am doing OK at the moment, one day at a time is my motto, I don't have a partner, but I do have a dishwasher, next best thing...lol...housework is not a problem for me, I quite enjoy it and my hospital is only a 10 minute drive, which is lucky because it's my second home at the moment. Thanks for taking time to think about me, I don't post much on here but I am always lurking in the shadows.
Kattykit xx1 -
Hi@Wendy55
thanks for your caring advice
I have a husband and two adult children that live at home and yes it's hard for all of us at the moment but everything in terms of the routine that we have is all as normal I'm trying to still be the mum that im used to being1 -
HiKattykit
i forgot to ask you whether you're taking 600 mg of the ribociclib or 400mg I'm taking 400mg that's what we compromised with my oncolgist0 -
Hello @FYONA1
See the link below to the videos mentioned
https://www.bcna.org.au/metastatic-breast-cancer/personal-stories-from-australians-with-metastatic-breast-cancer/
0 -
Hi @FYONA1-so sorry you are having such a hard time and worrying about what all this means and time frames. I think most of us think about these issues. I have found it really helpful to talk directly to my oncologist but also the BCNA counsellor -by phone and 5 sessions for no cost. I really encourage you to talk to them as they have some great ideas and strategies to help with handling these kinds of issues. You don't have to struggle alone. All the best0
-
Hi MoiraC
thanyou for helping me out and listening to my personal feelings
i have a phone call organised Tuesday evening between 7.00-8.00
im hoping that this will help me out with my thoughts0 -
Hi Giovanna _ BCNA
Thanyou for being so helpful
I appreciate everything that you've done for me in terms of communicating with such wonderful supportive and understanding women
they have all me a great deal2 -
Hi@FYONA1, so sorry to hear that you are not having a good day, it happens, tomorrow is another day, did you see the message I sent on the other post you put up in spinal mets? did the conversation last night help you at all, I will send you a private message a bit later,how old are your kids? and what state if you dont mind me asking do you live in?
wendy550
