I’m overwhelmed by your responses and good wishes...I’m not able to reply individually to you as I’m too shell shocked at the moment
My oncologist is referring me to an ophthalmologist to see if they can help my vision...I don’t feel Ill or anything but I can’t drive like this so I’m imprisoned
I don’t want to mix with people but if I could just go for a swim or walk would be great
My daughter Miranda who lives in London is coming up tomorrow till Sunday and my other daughter Vanessa is always around...she’ll ride Bugsy for me when she has time
We’re supposed to be going to the Cotswolds in September for a family holiday but tbh I’m just not feeling up to it...I won’t be able to do anything...breaks my heart
Barb xx
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I was shocked too and didn't know what to say, Barb, so for once, I kept my mouth shut. I liked, very much, what Viv wrote about her friend that had the same condition for over 17 years and glad there was some hope there for you. At the end of the day, we must always have hope no matter what; I never want to live without it, and when you have Jesus, there is no such thing as false hope because He is ever true, beautiful, marvelous ... our Saviour, in all things, amen! sending love and prayers!
We all love you. Maybe when you feel up to it your daughter can take you to visit Bugsy and give him hugs and sugar. I am just at a loss of words. We are all here for you. Even though we have never personally met I consider you a sister friend.
Yours are always the posts I make time for when on this forum. Your wisdom and spirit drew me in to follow. Love your willingness to be so open and share with others - good and bad. Now I wish you peace and comfort. Love and prayers from Tennessee.
Barb, I was just devastated to hear your news yesterday. You and Nancy are the ones that I have looked to for advice and guidance since I started my journey just over 2 years ago. I know it's difficult not to get down in the dumps and feel like it's hopeless. But I hope you can dig down deep and see what all of us see in you and that is hope and perseverance. I pray for you everyday. Hugs to you my fellow warrior
Barb so sorry to hear of your latest setback. You have been one of the greatest supporters on this board and I have always taken the time to read your posts. You are loved by many. Please know that positivity and prayers are being sent to you. Fingers crossed that the treatment helps. Feel the love and keep your spirit up.
Hi Barb,
Please don't feel bad for not responding individually to messages. You need to concentrate on yourself right now. That's your top priority. Just know that you are well loved and respected on this site, and that we all care about you. I'm glad you are going to be able to spend time with Vanessa and Miranda. Perhaps you will change your mind about going to the Cotswolds. Just see how you feel nearer the time. A change of scenery might be just what you need. I hope the appointment with the ophthalmologist goes well and you will have a successful course of treatment. If you feel up to it, please let us know how you are doing. You can email me anytime you want to chat or vent. Or if you would prefer not to talk until you have processed everything, that's OK too.
Oh Barb, Im so sorry to hear your news. Nothing I can say will make you feel better but Im glad your daughter is able to come and spend some time with you. Im sure she will be a great comfort. It must be very frightening for you right now. All I can do is send you my very best wishes and sincerely hope you can somehow find some peace amongst all the turmoil you must be feeling. Xx
Hi Barb,
I'm so glad that you'll have both of your daughters with you these next few days, and I'm glad that you'll see the ophthalmologist about hopefully improving your vision so you can drive and ride again...These sound like two good developments; I'm hoping for even more! (heart)
I’m thinking of you all the time and wishing you well. You are in such an uncertain place at the moment. I so hope your treatment plan sorts things as much as possible and gives you back some quality of life.
I’m sure your daughters will look after you the best they can.
I would suggest you keep your holiday booking in the Cotswolds. Firstly, you need good things to look forward to and secondly the UK weather forecast for September is looking pretty good!
Why oh why are so many lovely ladies facing so many challenges with this cruel illness? I pray for a cure soon but I feel that COVID may be affecting research etc at the moment.
Take special care of yourself.
Love Jo xx
I’m glad your girls are close enough to visit and I hope one of them can transport you to Bugsy for a nuzzle. We are all here if we can do anything. We love you ❤️
Hopefully, the opthalmologist can correct the double vision for you. This all just breaks my heart. Cancer sucks.
Hugs, Hannah
Dearest Barb — .This is a bitter pill to swallow. No one wants to hear the forecast you heard. You certainly deserve better.
Even with this pit in your stomach and the uncertainty, please try to embrace the people, places & things you love in this moment. Time is fluid and we should try to bend it to our will while we can. The doctor may say it is “months not years” but you may be able to enhance this new period with life events that comfort your mind and heart.
Keep plugging away. Be good to yourself. Have the girls visit. Walk with them to be with Bugsy. Brush Bugsy. Breathe in Bugsy’s equine energy. Give Bugsy a treat. If you’re not feeling too lousy, go to the Cotswolds. It’s a beautiful place.
As discouraged as you feel, I hope you can find a way to accept each day with some new medicine for your soul — the comfort of family, the spiritedness of Bugsy, nature around you, and the love from your fellow sister warriors on this board. Blast loud music. Drink an extra cocktail
I sometimes joke that this delayed reaction is my “Scarlett O’Hara defense mechanism.” — “Hush now. I shall think about it tomorrow. “
Be like Scarlett that way. Yes, I’ve long since realized that this movie concealed a multitude of sins. Still I admire her character’s persistence and even stubborn tenacity to push on.
Embrace this day with your girls and Bugsy. Don’t think beyond that if you can. “Think about it tomorrow” so to speak. If this doesn’t help, I’ll think of some other movie metaphor to guide you! 😀💕
Distraction and deferral are some times unfairly maligned coping mechanisms. This is one of those times. Embrace them now and then.
I know Southwell very well...my husband used to live in farnsfield and I used to have dressage lessons sometimes at Brackenhurst...it’s a lovely part of the world
Barb, you have been my bright spot in this journey with my sister. I pray things improve with you. My sister was bedridden for 2 months and each day was a struggle, but God smiled on her and now she is much better, she can't walk as before, but she can walk and is not in pain. May God smile on you too....
I think it is wonderful that your daughters are there for you to help. I am old school too so I think that if you do not feel sick, that is a good sign. Hopefully the ophthalmologist can figure out the best way to help you. 🙏🙏🙏🤞
Barb the break away will do you the world of good. You need to remove yourself from your surroundings and explore a different place or just relax in your own world.
I’m sure the Opthalmologist can help you in some way otherwise your Oncologist wouldn’t have recommended it.
I know you are back in that dark place again but there’s help so don’t give up the pleasures on offer.
Enjoy your time with your girls. They love you and would want to see you in a positive way.
Nothing to add to all this wonderful advice except to say hang in there. Horse people are tough. And a bit crazy. Being brave doesn’t mean you aren’t scared shitless.
I am so sorry for what you are going through. I am sure you feel isolated and with virus how could you not. I find it often brings me down. I will be praying for you and as hard as it try and stay hopeful.
GOD BLESS YOU, BARB! Just found out Monday that my cancer has progressed after 34 months of stability. I am in your corner with love and empathy. May your eye doctor have just the right solution!! 💗💗💗💗💗
SeattleMom - I'm so sorry to read about your progression. I'm not sure this is accurate, but I think you've been on Let + Ibrance? If this is the case, please know that I switched from that treatment to Faslo + Ibrance almost two years ago and it has worked out pretty well so far (fingers crossed!). I don't know if this is your next treatment but in case it is, I'll mention that I feel much better, e.g. energy/knee problems), on the Faslo than on the LET.
Please do let us know how you're doing...And, again, so sorry for what I imagine was disappointing news...
Thanks so much for reaching out! Yes, I finally found out what the second letdown feels like, so on to second line of treatment. ☹️
I had progression in both my left and right iliac and a slight growth in a lymph node in my chest. My oncologist said next line would be faslodex but also brought up participation in a Phase I-II research study. At first, it piqued my interest, but I ended up wondering why she would offer an early phase trial when there are still a few “tried and true” options available to me. Any thoughts? She’s a research scientist so it makes me wonder if she’s more interested in running trials versus a doctor/ patient relationship. It made me a little sad, because I really respected her a lot and enjoyed her care.
Another question for you: why did you remain on Ibrance after you had already taken that in your first treatment plan? Just curious.
Hi Barb, Just wanted to let you know that I'm thinking about you, as I'm sure many of us are. Sending love, and wishing for the best with the eye doctor and everything else...
I’m starting radiotherapy on 2nd September so not too long to wait...5 sessions
I’m trying to be hopeful but very difficult..saw my usual optician a few days ago and he’s making me some glasses with prisms so I can focus...not too convinced they’ll work tbh...I’m really wanting the radiotherapy to sort the vision problem...apparently it’s the lesion pressing on one of the eye muscles making my eye look upwards instead of forwards...very disorienting and peculiar
Barb, So glad to hear that you have a promising plan re: the eye issue -- that does sound disorienting! And is a reminder that this disease can cause truly unexpected issues!
I'll be thinking of you, wishing you success with the radiation...
I've been trying for a week to think of something useful to say. I have nothing. I'm shattered for you. You just keep getting kicked in the teeth. I hope you've been able to nuzzle Bugsy, and the radiation therapy works wonders. I think of you every day. Andi
Thank you Jo...means a lot....any vision improvement will be a bonus
Just want to start the treatment now...waiting is so soul destroying...I can’t eat and not sleeping well as I’m not exercising...I can manage to read a bit and watch tv with one eye covered so not totally incapacitated
Barb, I hope you're doing okay-- one day closer to the treatment!
I had a random thought for you...I recently had a minor eye issue, wore patch for a couple of days, and found that listening to pod casts while laying down with my eyes closed really helped. As engaging as TV/reading, but requiring no effort from even the good (but overused) eye.
And of course there are a million options...I chose sort of (virtual) page-turner types, e.g. serialized investigations, because they kept me from getting too antsy.
Just a thought, along with a message that - like all of us - I'm thinking of you, hoping for the best... (heart).
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Thank you my friends 🌹❤️🥰
Thank you for your support!
