Thank you for being here. I am new here. I am angry, scared and exhausted. And apparently no one in my household can offer support as I was just told to suck it up; at least I'm beating it and at least I'm not dead. So again, I thank you for being here to listen to me whine. I was diagnosed with triple negative breast cancer in October. My suggested course of treatment is 12 rounds of weekly chemo, a surgery and radiation. I'm 4 deep in the treatments and I'm tired of sucking it up. I'm sick, I'm tired and I'm sick and tired of being sick and tired. I was eligible for the clinical trial so I signed up! My prognosis would not be such that it is without these trials. If I can help our future generations I hope I can do so. Every treatment I receive taxol, aloxi,decadron,benadryl and pepcid. Every third treatment I receive the aforementioned as well as carboplatin and either the placebo or the trial drug, atezolizumab. I had grown my hair very long in the past few years. The thought of losing it brought me to tears but when I started losing it to the point of looking like a mangy dog, it was really rather liberating and empowering to shave it off! I bought some big hoop earrings like I use to wear in high school, I can play at being a pirate if I wish. aaarrrgh matey; or I can apply heavy black eyeliner and re-live my #punklife of so many years ago, though back then I was never brave enough to shave my head, but I can preach about the teasing of hair and aquanet, oh the aquanet...I should really apologize for my part in the destruction of the ozone layer. So, yes, with the treatments this far my tumor has shrunk by more than half. I feel like I am beating this monster. My surgery could be a far lesser surgery than I originally thought. I'm not dead, I could live, potentially, another 40ish years. But sometimes I'm tired, psychically exhausted, and need my feelings validated or even just acknowledged. Thanks for listening. - Cheers!
Whine whine whine: Thank you for being... - SHARE Breast Canc...
Whine whine whine
Have you shared some of your feelings with your doc? Many cancer docs know of therapists that specialize in cancer. I go to Roswell Park, and they have 2 PhD.'s on permanent staff along with a number of social workers who specialize in cancer therapy. I have made use of them, and they are great!
As for family support, that stinks! However, you are very much not in the boat alone!! Everyone handles the diagnosis differently and some don't want to hear about it because if they do it becomes real. I learned eons ago to expect nothing, and anything I do get is bonus territory!
You are NOT whining, Your feelings are real and very valid. However, you cannot force other people to be different - they have to want to. So please make use of a therapist Talk to your doc about the possibility of an anti-depressant and/or anti-anxiety med. I promise you that you are not the first to ask for psych help, too! Just remember that you need to do the best you can to take care of yourself without depending on someone else. Can you do things like hire a cleaning service to come in every so often and help? Here in the States there is a cleaning service in my area that offers free help to cancer patients. Even if they only come once a month and do a deep cleaning, it is help!
Your hair will grow back! I had hair almost to my waist the first time, and my hairdresser cut it into a nice bob, and when it came time we shaved it off rather than watch it comes out in clumps on my pillow or in the shower. Do a google search for Paula Young Wigs, and see if you can order at least one. They are very inexpensive and good quality!!For me, losing my hair was a great excuse for buying scarves, too.
Please keep us updated as you take this journey. You are not alone!! Hope this helps. Good luck and God Bless
Thank you so much! Good advice which I will take to heart! I have treatment again tomorrow and I will speak to the social worker at my oncologists office. I will also look into a cleaning service; my surroundings greatly effect my state of mind. I once was very much a "control freak". A place for everything and everything in it's place. I have learned to let go a lot in the past several years but I suppose I'm still a work in progress, or a piece of work, haha.
I sometimes forget that I'm not in control at all, never really have been. Also expert advice to not expect any emotional response I feel I need from another! I am the slowest student in the class when it comes to learning I have no control.
Thank you for your kind words! I will keep you updated, it's so wonderful to have this community and I look forward to reading others journeys as well! Happy New year!
Exactly !! Anger disappointment fear worry and helplessness rear their ugly head from time to time I find , then it switches to complacency hope and optimism / crazy really but all the meds and chemo must surely affect your brain as well as the body beautiful.
My hair which used to be dead straight long and brown now is fairing and curly !! But I don’t have to wear Scarves at present
I’m currently in Auckland as my eldest son got married end of November so the weather is sunny and bright , and I’m enjoying seeing old friends, feeding the native birds, gardening , shopping , and resting daily !!
I m thinking of you and hope you had a pleasant XmAs and New Year’s Eve ?
You sound like a very resilient character and It sounds brilliant your tumour shrunk ! Fantastic news ! Keep smiling .
Best wishes
Denise xx
Thank you Denise! I'm certain you are correct that the drugs are affecting my brain as well as my body. I feel a bit like a caterpillar. My body is my cocoon and everything is turning to mush until I can emerge just in time for summer here in the northeast United States. Winter has never been my season. I really hope my hair comes back light and curly, haha!
The holidays were pleasant thank you. I hope yours were as well! Congratulations to your son! Wishing you all the best in the new year ❤
To whine. Plz whine what you are going through no one has to tell you to suck it up. This disease will leave more than the scares on you body but in your mind. We dont forgot how close we were not to being here with our love ones. Thank god for medicine now that we can beat it. But it kicks our butt whie we do it.
❤
You are definitely not alone in your thoughts. it is a very trying time which people who aren't going through it don't understand. Just remember, it does get better and it seems like you have a great sense of self and humor to get you through it. I am coming up on 3 years now since surgery,chemo,surgery again and radiation. Still have after effects of it but we are strong and do get through things and appreciate everything so much more...inclusing our hair...lol. Good luck to you!!
❤💪 my friend. I am learning! My humor is my saving grace. I keep threatening to write a book...maybe now I should seriously begin. Sending you love and all the light the universe has to offer ❤❤❤
Where are you located? There are advocates all over and groups of women going through what you are going through. No one understands like others who have gone or are going through this.
“Suck it up”????? Heartless and/or ignorant. You may give them the benefit of the doubt and enlighten them or keep your distance and be grateful for the people who support you.
Hi Roberta! Thank you! That was my initial reaction. He is actually rather compassionate and has a big heart in certain situations. We come from very different and yet similar situations. I am in upstate New York...depending on your definition, haha. Midway between NYC and Albany; nowhere near Buffalo or Rochester which is REALLY upstate! I brought him through a very difficult time when he lost a foot of his colon and it was a 2 month timeframe until it could be reattached. I was hoping for the same time and attention I gave during his recovery, for what I am dealing with. Most days I can be a cheerleader but there are some days where I am sick and tired of being sick and tired and want him to just hold my hand and let me cry for a second,but that may not be something he is emotionally capable of doing right now...he has his own baggage. I'm learning to find my voice and ask for what I need...not an easy task for me!!! We will work it through or God has another plan. I'm not sure if it is the poison pumping through my body, my outside support people or what. But I am grateful for the lessons, the new ones and the ones I am learning over again. I am still such a petulant child in the eyes of God...good thing He doesn't give up on me! Thank you for your support ❤
Groups are very helpful.
Of course there are groups at SHARE, both in person and phone.
There is a group in Kingston that covers both sides of the river. Good people. Covers Poughkeepsie area.
❤ I will definitely look into this, thank you
Have a good old whine - it's therapeutic! And just realise that family probably don't know how to react - just be thankful that your friends will probably fill the gap. We can all relate to what you said - and boy, did you say it well! I live in UK, and if it's a small consolation we have our NHS service which doesn't exactly provide the best service (to put it mildly). I got frustrated too, and now blast off on a blog aftercancers.com
This might give you a wry smile, and perhaps some ideas on how to make treatment more user-friendly. There's lots on things like benefits of massage - so go for it!
Thank you for your kind words! I do have amazing friends that do fill the gaps! Wry is my favourite flavour, haha. I will be accessing the link post haste. I have friends and acquaintances who are under socialized medicine. I'm not convinced. Healthcare here in the states is incredibly broken as well. $10,000 I have to pay before my insurance pays. I am incredibly blessed to be in a situation where I won't have to live in my car (been there done that) and there are so many others far worse than I! Perhaps I can take this situation and advocate in some way? I know we have a "special needs" President ( and I mean that in a kind and loving way 🤷). Ever forward....and I'm going for that massage❤❤❤❤
I think services are a postcode lottery in UK but can’t fault mine- we have Robert Ogden support centres and the best innovation has been fitness classes which are free and form a regular meeting place, including ‘Walk and Talk’..... so it can feel lonely but there is support - it’s hard for those who find it difficult to get away from family and Having to return to work even when we are so tired etc...... keep strong and hopeful
First, and foremost I pray you will over-come , and get through this challenging time. You may need to go to therapy, support groups, a religious organization/institution, or natural modalities. You have a right to whine, and yessssss you are allowed to have a pity party, but sister/warrior don't stay there. Your crown, and glory will grow back, but I really like my wigs/extensions, even though my hair has good length, and thickness. Like you 12 years ago I took my power back by shaving my entire head. I thought wow, I look like a warrior. I actually stopped up my toilet trying to flush my hair down. So sister/warrior stand strong, fight another day, and yes your life depends on it. Happy 2020 New Year sister/warrior, and yesssssss over-comer. I pray your restoration, and joy will return quickly.
❤ thank you my friend. I WILL overcome by the grace of God. He brought me this far through SO many storms, and apparently He thinks I'm badass...but I am weary. I just keep praying and know He has me in His ever loving arms and some sort of plan for me I do not yet understand ( I guess I'm a slow learner, haha) I'm trying to have fun with my new look, though the treatments make my remaining hair feel like pins in my scalp. Funny story...about 16 years ago, my daughter (now 30) wanted extensions and corn rows. I had a very newborn child at the time and never having this experience for myself,had no idea how long a process this is! I took her to a salon an hour away from our home to give her this gift; it took 5 hours (who knew? - not me! Haha!) $150 and a $100 tip.....5 HOURS! When we got home, this child complained that it was too itchy and took the entire process off her head. I could have killed her! And now we are the best of friends, after many trials and tribulations. Hahaha! She is the one person on this planet that can make me laugh until my sides nearly split. Thank you for your kind words ❤ Sometimes I crumble, but you are correct...I,as you are, a warrior...I am (virtually) taking your hand to fight the good fight, thank you sister/warrior ❤❤❤❤ and a happy and HEALTHY new year!
Greetings Sister/warrior What doesn't break you, will only make you stronger. When we are weak God s strength will renew our strength.XoXo
❤❤
Unless they've had cancer they have no idea. That's why we have a HelpLine! We are all survivors! We understand and support each other.
Thank you gladudey! True story! Until one has "been there done that" we truly can't understand . Thank you for being here ❤
There is nothing wrong with feeling like you do. Thankfully I had some great support from family. I enjoyed my shaved head so much, I almost wish it didn't come back. I am so sorry your family hasn't been there for you. They all need a dose of reality. Maybe the statistics on how you really feel or how TNBC has a higher chance of coming back. I am almost 4years post chemo and my toes still hurt. So does several areas in my chest. Do you think you can get your family to a group therapy or support group?
Thank you Kathy! My grown children are a great comfort to me! My S/O is not an emotional man, but he is learning to deal with my craziness and I have a new outlook on my life, I'm finding I have no tolerance for half assed (pardon my vulgarity) I'm really beginning to see who my true, would do for me as I would for them, people are, and since I had a mini meltdown after his (what I presumed, insensitive comments) he has come round. I do love my hair, wish I had been brave enough to sport this look so many years ago! May continue on after all this madness ends...no hair dryer, no curling iron....no hair dye! I'm sorry you continue to have post chemo issues, I'm sure I will not escape unscathed. But here we are, look at us go! After chemo I mostly want to curl up in a cave and forget the world exists but then there are the days I feel mostly good, and with your support and my other support, some days I feel unstoppable. Thank you for being here! I will add your name to my prayer box which contains a healing prayer ❤
Prayers are always welcome. Thank you. I think we should be able to have squirt guns and Everytime someone is being a butt head we get to squirt them in the face. Well some days I think shock collar and zap them. All we can do is one day at a time. Enjoy the better days and ride the storm out in between.
Oh,my friend, I like the way you think!! 😂😂😂❤
So sorry. Ppl have no idea. What we. Go thru. N. Suck it up. That's. F up. My hub told me I'm dieing if cancer he can't help me. Crazy. Ask your onocologist. For Adderall. I was sleeping. Like 5 days straight. N. It has helped me a lot.
Thank you Larelei!! My big chemo (every 3rd time) wreck me for an entire week. The smaller chemos, I'm down on the weekends but feeling better by Tuesday or Wednesday. Everyone here has been phenomenal ❤ and I'm half way through the first round. We got this! Any naysayers be damned!!
I know how you feel. Being diagnosed is devastating. I was in 2017 however I thank GOD for family members who was supportive. I also went to the Gilda's club. It is located in New York, but there could be others in other states I am not sure. The staff there as well as the people that come there who also was diagnosed with cancer are so supportive of one another. Maybe you should try it, it may lift your spirit.
Hi Ladyjoyce! Thank you for your kind words and support❤ I'll check into Gilda's club! I live upstate in the Hudson valley. I hope you are healing well ❤❤❤
If it helps, my husband did not want to talk about it. He would rather ignore the fact that I could die. That was 18 years ago. I can tell you that I went to a nurse who specialized in talking to women with breast cancer. It was great to have my feelings validated. I just felt it was important to talk to someone since I really couldn't talk to friends or family about the possibility of dying. If this post made you feel better, cheers to you. However, if you feel you need help in navigating all of what you have to deal with, I highly recommend talking to someone who is an outside observer. I think that you can get some pretty amazing insights from people who are not emotionally involved. Best of luck to you and may God hold you in the palm of His hand.
Thank you! Ugh, these men! I am so happy to hear you are 18 years surviving...gives me great hope! I feel His loving arms around me every day! I must be here for a reason, but some days I'm so tired of being a warrior.
I can relate! I've lost many friends because I survived so far. 4 years out. I've been told, " Okay now move on." They dont seem to understand that having cancer is life changing n we have to deal with it for the rest of our life. As a result, I have decided not to have any service when my time comes. I've told friends n a n family to see me while I'm alive, there's no other chance. Even that they refuse to hear. I've let go of many many friends n family. I realized that I need "real" caring people at this stage of my life.
I hope you find the support you need! Stay strong and don't let anyone bring you down! After all you've been through,
I hope you find the comfort and compassion you need. In may instances my dogs gave me the comfort. Unconditional & always loving.
Hang in there n take care of You! You need your strength & energy!
❤thank you love. I am really finding out who my "ride or die" people are! I am so grateful for this site and for your kind words. I don't have a dog (yet!) But I do have a cat that brings me great comfort and joy. 4 years...you go my friend! I can't wait to celebrate each anniversary and plan on living each day to the fullest ❤
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