update....

[kokopelli2017]

hi all. has been a week since my initial post. thanks again for all the helpful and supportive ideas. i now have 2 weeks until my 'in person' appt with my onc. she is near impossible to get on the phone. but i will definitely devote my appt to discussing palliative care. and the new mets to my neck that are getting larger by the day. she will also be ordering CT scan and bone scan, as i am due.

in the mean time.....as much as i hated to ask for help....i did! the sister that lives close by is on board to help me shower/wash hair. and she is happy to run errands. in exchange for rent reduction, my roommate is willing to do my laundry and the cooking and cleaning. so basically i am 'paying' for it, but so, so grateful for the help! fingers crossed that palliative care will provide some of these services for free, as income is limited.

i made it out several times this week....had appt with the spine doc and he ordered a new lumbar MRI to see what might have changed that i am experiencing such rapid decline in mobility. and also the increase in pain....ouch.! visited with my grand-cubs which always makes me smile. and even made it to the salon for monthly hair color maintenance....although that was not fun....not like it used to be. before it was a social event, now i just sit in the corner quietly....and hobble my way around. getting difficult to sit in that shampoo chair. but at least i did it. but honestly, feeling extremely beat up and exhausted by this weekend...just hanging out on my bed. everything comes with a 'price' these days....both literally and figuratively ;).

i hope you all are doing as well as you can! i admire your strength. and thanks again for the amazing outpouring of caring and support. i was feeling so alone. not quite as much at the moment.

hugs to all!!!!

carole

xoxo

[mariootsi]

Glad you are getting the help you need! It really is worth it to ask. Although, believe me, I know how hard it is!

[kokopelli2017 in reply to mariootsi]

thank you Marianne! xo

[debbiedo2063]

Well done you, I also admire your strength, it must have taken a lot to ask for help and to gather the energy to accomplish what you have in a short space of time too. You are never ever alone, so much help and support here when it’s needed.I get my 6 months scan results on Wednesday and I feel posting here whatever the results are a massive part of the support network.

Lovely to read your positive post

Take care

Debra xxx😍

[kokopelli2017 in reply to debbiedo2063]

thanks Debra! the women on this site, like you, lift my spirits. not that i wish this on anyone....but if you have to deal with mbc, this is the place to be! no one else really gets it.

fingers crossed for your scan results on wednesday!!! hoping for positive news for you!

will be waiting to hear...

hugs,

carole xo

[Rubyjude]

Well done, Carole. I hope the positive responses you got when asking for help will ensure that you don't feel so reluctant next time.

[kokopelli2017 in reply to Rubyjude]

i am a slow learner....hahaha. just kidding. as much as i didn't want to, it was actually a bit of a relief to ask for help....i was realizing i was in over my head. thanks so much for the encouragement! xoxo

[life8888]

Stay strong! Wishing you all the best, and please never hesitate to reach out!

[kokopelli2017 in reply to life8888]

thank you! and will do👍.sending hug....xo

[jersey-jazz]

Dear Carole-----I say,"Hear! Hear!" I absolutely agree with the above responses and feel proud of you. Now, please keep the communication open from now on. We all care about each other.

[kokopelli2017 in reply to jersey-jazz]

and i say, "thank you! thank you!" big hug xo

[Bettybuckets]

That is getting a lot done! Rent reduction- great barter! My 30 year old daughter always says that what else should you spend your money on if not for your health! And maybe then sort out a free/ subsidised way to get help later but right now- just well done you for getting it sorted! I just heard that I have my first compression fracture… it is in lumbar region. I had a n MRI on Thursday and chiropractor today looked up results.. told me.. but will hear it from the dr tomorrow… so this will give me time to process this news. What would you want to know if you could ask? I am too numb to think.. but I knew that this was where I was headed. Not surprised as pain has gotten worse.

[kokopelli2017 in reply to Bettybuckets]

hi Betty,thanks for the encouraging reply....and your daughter is spot on! although it is discouraging that here in the US, your wealth (or lack of) can determine the quality of your healthcare. i have been on both sides of the equation. but i will not get on my soapbox today...will save for another discussion (wink).

i am so sorry to hear of your compression fracture to lumbar spine...and the pain you are experiencing! i do not know your history but i am assuming you are 'bone-only' thus far? and wondering if yours are mainly 'blastic' or 'lytic'? just curious.

i can't think of a particular question to ask besides the obvious.....what activities you should avoid, how long to heal etcetera. and are your present pain meds helping or do you need an increase?

i did read your post from a couple hours ago and now know you are moving soon. i recently moved two months ago and that timeline coincides with my increase in pain and decrease in mobility in my spine. DO NOT LIFT ANYTHING!!! you will be tempted, but in the end, it will bite you in the butt. even though i tried not to do anything, i know i did overdo. i can't stress that enough. please just sit in a chair and direct the movers and those helping. i know it is easier said than done.

btw....i love that new england cape cod style cottage....and omg....right on the water! so charming! i know you said you live in Plymouth. my older sister lives on the cape. such a beautiful area.

please keep us posted!

sending a big hug.....

carole xo

[love2golfwell]

So happy you are getting the help you need and that you are feeling less alone. Happy you were able to spend time with family and get your hair colored. I'm so sorry you are having so much pain and difficulty getting around. That is so hard to deal with. I hope your doctors can figure out what is going on and offer you some relief for your pain. Sending you hugs and prayers.

[kokopelli2017 in reply to love2golfwell]

all my life, physical activity brought me joy. and enabled me to have a career i loved. and participate in my life. now i can barely walk. and pain levels high. but if i complain, i feel like such a 'whiner'. thanks so much for your understanding! that's what makes me feel less alone : )

sending hugs.....

carole xo

[love2golfwell in reply to kokopelli2017]

I am so sorry you are going through all of this. It is hard to know that you cannot go back to the type of activity and life that you once knew and have to deal with a new normal that is not pleasant. To have so much pain and not be able to walk must be so very difficult for you. You should never feel like a whiner if you complain. People that are not in your shoes could not possibly understand what you are going through, but the people on this site do understand and are here for you. I have been lucky so far, but I know that any day that could change. I am obsessed with playing golf and exercising as much as I can and when others tease me about it, I tell them that these activities are keeping me alive and happy and that the day may come when I cannot do either so I am storing up memories to savor for those days. I don't know if you have ever looked into acupuncture or other treatments like that to help alleviate your pain and give you some mobility. I have not tried that, but have heard good things about it. Maybe getting some gentle massages might help or taking epsom salt baths if you have someone to help you in and out of the tub as those are very relaxing. I buy salts on Amazon that are scented with lavender, eucalyptus or rosemary. I have found those to be helpful if I am experiencing pain. I also use a lot of essential oils. I put some in a diffuser every night and have made some blends to rub on my skin. I realize these would be temporary fixes, but they might help. In the meantime, please know that you are in my thoughts and prayers. Sending hugs

[kokopelli2017 in reply to love2golfwell]

thanks again for totally understanding how difficult it is to adjust to my 'new normal'. so many choices i would have made differently had i known this would be the outcome. but 'that was then and this is now' as the saying goes. i'm sure this applies to many of 'us'.i wish for many, many more years of golfing for you!!!

sending hugs.....

xoxo

[love2golfwell in reply to kokopelli2017]

You are so sweet. I shed many tears when I first learned of my diagnosis after being cancer-free for almost 8 years. I was also very angry at having to take new meds, go for scans and radiation. In my previous diagnosis I only did bloodwork every 6 months, no scans except for annual mammograms and never had radiation. I blamed myself that I now was diagnosed MBC and thought about choices I had made since my original diagnosis, like having a glass of wine a couple of days a week or even about food choices. My doctor told me I had done nothing wrong and it was just bad luck that the cancer had spread even though my original genomic score indicated only a 7% chance of recurrence. I realized that I could dwell on the past and stay angry which was of no real benefit or move forward and change my diet, cut out alcohol except for an occasional celebratory drink and make sure to get as much exercise, fresh air and sunshine as I could handle. I also enlisted the aid of a cancer therapist, a cancer nutritionist and a lovely woman who does remote energy healing with me as she is a friend of a good friend of mine. I also listen to a lot of health videos. I feel like I am doing everything I can to try to stay around for a long time. I want to be here to see my first grandchild, whenever that might be, and to dance with my son at his wedding sometime next year. I know we can only control so much in our lives so I choose to control what I can. Although it is hard to not have some regrets about the past, please try to not do that to yourself and focus on what is going on now and how to get the help you need to regain some mobility and ease your pain. Sending you positive vibes and good thoughts.

[kokopelli2017 in reply to love2golfwell]

one of my goals was to see my younger daughter married and have a baby that she so wanted. i told her to hurry up and not only did she give one 'cub' but also a second. i already had a 13 yr old grandson from my older daugher but now a 2 year old and a three month old. yes, they bring me joy! i wish that for you!!!! xoxo

[love2golfwell in reply to kokopelli2017]

That is so wonderful! Grandchildren are surely a blessing. I do hope I get the chance to be a grandmother. I know that will bring me a lot of joy, too! Sending hugs.

[Bettybuckets]

I know things must be horribly different right now for you… )and me too finding out I have my first compression fracture today) but it seems to me that I am reading other women manage to heal slowly or get radiation or new better meds… so it seems like often things just get better over time. I sure hopes so!