Thank you for all your heartfelt wishes...I’ve been hiding from the world recently but slowly emerging now
I had a thorough check at the eye hospital on Wednesday and I still have double vision but it changes from day to day...there is damage to the optic nerve so vision is cloudy/dim in that eye and sometimes I hardly notice the double vision...it’s horrible though
I’ve managed to go swimming and walking on my own and seen Bugsy a few times...although not confident about getting on him yet or ever but maybe if vision improves (nobody seems to be able to predict) then I might get on board
My oncologist is leaving me on faslodex this cycle but if markers go up a lot she’ll want me to try chemo...I really don’t want to go that route and have always said I won’t but she’s trying to talk me into it...said I’m fit and should cope (different view since I last saw her??!!)
My GP has prescribed some fentanyl patches for pain...not too sure they’re much better than oxycodone tbh but I’ll give them longer and try to find a dose that suits
Not much more to say apart from this disease absolutely sucks big time and I wouldn’t wish it on my worst enemy
Love
Barb xx
Written by
Barbteeth
To view profiles and participate in discussions please or .
So lovely to hear from you Barb. Even though not great news...... just to know you’re still coming to this board makes me smile. Thank you for the update.
Always good to hear from you.
Chris
Your ears must have been burning. Was wondering how you were yesterday.
I’m glad you have been out but the vision is such a big issue for you. Let’s hope there can be some kind of improvement soon.
As far as MBC treatment goes weigh up statistics and then see how you feel about having it. Think I would feel the same as you but honestly, I think you will be ok as you have a strong will and mind.
Thank you for sharing your update. You have been in my thoughts. Sending you lots of love. Know you miss riding Bugsy. Hoping for some positive change!
I am so sorry for you with your pain. That is the worst of it all. Even worse, would be the would be emperor of the USA fooling the people to allow him four more years in the reign of terror.
Amen to that. I don’t know if we can survive another 4 years of “the emperor’s” reign. The only thing that makes my cancer worse, is that it will probably be around a lot longer than 4 years—but it is only affecting me (and of course all my metastatic family here).
Thank you for responding. This particular misery loves company and is hoping for an overwhelming majority of company. It is so bad that we have to talk in tongues in this country, now.
Thanks again for the update. I also appreciate our catch up today! It's good to see you active on this board again. It's not been the same without you.
Sophie x
You take whatever pain measures they give you Barb. They can find a level to manage your pain. You should not have to suffer with needless pain my dear.
I have been in Abraxane since May and the worse side effect is exhaustion. That just seems to be me though as many people have it and it’s not bad for them. Just to let you know from somebody having chemo.
You are always in my thoughts and I worry about you. Thank you for taking the time to update us. We have all become a little messed up family on here and we care about you. I’m glad you can go talk to Bugsy ❤️
Barbteeth, good to hear from you, but so sorry for what you are dealing with. Please advocate for proper pain control, as it's unconscionable to have a patient experience significant pain when there are ways to mitigate it. Sending you a hug.
I’ve done chemo twice now, and it isn’t fun, but in some ways I found it easier than my current Afinitor/Faslodex combination.....I strongly encourage you to try it! It stopped my cancer for 23 years the first time, and was very good at decreasing my Mets when I was on it earlier this year....give it a chance! So sorry for all the challenges you’re facing...thinking of you!
I’m so glad you have posted...had been thinking about you and missing you on here . I know you are strong and fit , and will do whatever comes next ...you have a lot to live for ! Keep going and give Bugsy a snuggle ! Much love x
My sentiment is like those of the others, so very good to hear from you! Even though things aren’t great right now, it sounds like you’re doing the very best to stay positive. Hugs and prayers.
Hi Barb. Great to hear from you! Like you, I’m learning to live with my condition. If you have to go the chemo route, I would suggest trying oral chemo . I’m on Capecitabine (Xeloda) now but on metronomic (low dose) 500 mg twice a day. I’ve only been on it 10 days so I don’t know if it’s kicking back the cancer but I don’t have bad side effects. Just a bit of nausea on the 4th day and sleepiness/fatigue some days. But that’s about it so far so it is manageable. Maria
You have been very much on my mind. I am sorry it has been so horrid for you. I am glad your oncologist is more positive than before. And I hope you find a treatment solution that is both effective and tolerable for your quality of life.
Will keep you on my thoughts, I do my healing light circle every Saturday and will send energies to you and everyone.
I miss swimming, just don't feel safe to go to public pool on my meds with the pandemic. But have booked a ticket to go walking in one of our parks this afternoon, so looking forward to seeing autumn trees. Carolynx
Barb, you have been missed on this board but I get that giving yourself the space to concentrate on your issues is so important. It can be healing in itself. Sending good vibes your way. xx
I was so happy to see your post but so sad that you are suffering. It's just good to know that you are still here. I am praying that your vision improves! Your posts have always resonated with me. You are so genuine in your expressions: funny with a little edge, You shine. Keep on shining.
Oh wow. Yes. I hope this new treatment works well for you. Discovering and going they the side effects is yucky. Hopefully the mouthsores clear up fast. Thanks for keeping us posted. Faith
Barb, Happy to see your post but sad that you are hurting. I know this MBC journey has its ups and downs. We are all stronger together. Hoping the best for you with whatever course of treatment you decide. Please know that you have many who are praying for you. Keep the faith!
I was just thinking about you when I checked in yesterday. I’ve been sporadic lately too so I was hoping I hadn’t missed anything important from you.
Give the Fentanyl a good try. It works for me with the addition of Dilaudid for breakthrough pain. My breakthrough pain was getting worse so I had 5 days of radiation to my back and shoulder. It started to kick in yesterday and I felt so much better and got a lot done in my office for a change. But I didn’t sleep well yesterday, so today I’m a mess again. It just seems to be an up and down thing for me that I need to accept.
I’m now on oral chemo as well. Capecitabine. It gave me terrible nausea and vomiting until they knocked the dose down by one pill per dose...to 300 mg Bid instead of 400mg. I feel fine on that dosage. Don’t be afraid to try a chemo of some sort. You can always stop it and say no more if that’s how you feel, but you have daughters that I am sure still want you around.
Before the oral chemo I ended up in the hospital with hypercalcemia from not being on anything for three weeks. That was wicked and I don’t want to do that again!
Our best wishes in making your next decisions and figuring out wha direction to go. You know we will all be behind you. I was ready to quit when I was having the severe nausea and vomiting, knowing it wasn’t the life I wanted. My oncologist was quick to say he understood and that probably lowering the dose would do the trick. It did, so I now chose to plug along.
I’m am sure they would not but I know they would want you to try to see if something worked. If nothing works they are going to still feel bad but they will accept your choices, I am sure. I am not arguing for you to feel bad, just to give a good try before you decide that something won’t work. I know I was about ready to give up with my latest treatment because I felt so crappy but my oncologist was able to make it work. I feel so much better now. All of our situations are different so whatever decision you make, we will be there for you.
Hi Barb, so good to hear you are slowly feeling better. I just noticed you said you have never had chemo is that right? I am on xeloda now and I have no hair loss, my skin is glowing and no side effects so if you need chemo ask about that one. I know it’s different for everyone but you can always stop if it’s not for you.
It’s so lovely to hear from you. You sound upbeat despite all that’s being thrown at you.
I always said I’d never try chemo no matter what .... however I understand that it is far more advanced these days and when stage 4 they adjust the dose accordingly to attack the C whilst trying to give less side effects.... I know a lot of ladies doing well on capecitabine - could that be an option for you?
My close friend has just been diagnosed with stage 4 lung cancer and I’m devastated.... She’s in agony, already on morphine, having some targeted radiotherapy and awaiting a treatment plan. She was widowed young with 11 year old twins and now this ... F**k cancer !!
Forgetting about C for now ... Bubble & Squeak, my chicks are 15 weeks old and not far off laying or waking us up with a cock a doodle doo 🐓🤣. I think they look more like hens but can’t be sure ...
I’m still doing ok on my trial drug but I’ve got a couple of painful wobbly teeth so will call my dentist tomorrow... I need to be careful as I’m still on Denosumab.
So happy to hear from you. You have been on my mind. I am happy you have been to see Bugsy I sure he was happy to see you.
Take care and know we all love you and keeping you in our prayers.
Hi Barb. Thanks for letting us know how you are doing. You really have had as shit time of it, and I feel for you. Sounds like you are coming out fighting now though which is great news. Why don’t you consider trying the chemo (if it comes to it). You can always stop. You never know it might not be as bad as you think and may even help with your vision. Please know I am thinking of you
Thank you for the update Barb. Praying for improvement for you. Glad you’ve been able to walk & see Bugsy. One day at a time we walk this difficult journey. Enjoying the moments we can. ❤️🙏❤️
I have been thinking of you and am pleased to hear from you. I am hopeful they can do something for the vision.
Hi Barb!
I'm so late in seeing your post, I'm sorry, and I see you posted an update today, but did want to tell you that I was so glad to see you here on the board and to read that you are up to "emerging" a bit.
Gosh, what you're dealing with!! I'm so sorry! The vision issues must be frustrating and I can only imagine the pain...
But glad you were able to get some swimming in plus some time with dear Bugsy. I wonder if he knows that he's got a huge international following/fanbase here...as do you... (heart).
As always, sending my best wishes and love to you and your family, including Bugsy .
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
. 
Update
Update 
Update
Update from onc today
