User Profile
Pink66
Member
Joined 13 years ago
User Widgets
Contributions
Re: Celebrating 10 Years Living with Cancer
Sending huge turtle hugs to you and your beautiful team. I hope you had a wonderful day celebrating such a significant milestone. I send to you the hope of many many more years to come as it is a great reason to raise a glass or two. All my love Sharon (Pink66)Re: Taking a step!!
Whoops, only just saw this.. The first post is always the hardest.. I promise :) :) :) Your creaks and groans could easily be from the Letrozole rather than the Denosumab. For me I found the Letrozole turned me into a very very slow and old turtle until I could wind up. I have been off it for ages now and as long as I am on Denosumab (3 1/2 yrs now) I am fine. I have had a couple of breaks from the Xgeva (Denosumab) and found that within a few months I ache like crazy.. First jab back on and I am much better. I am unsure if you know that Xgeva can steal your vit d and calcium and to maintain levels I have been taking magnesium, liquid vit d and 122 mg calcium. I also was taking glucosamine to assist with my joints... they are all safe with this medication and will not interfere. I am checking one more that helps with inflammation as I cannot remember and just waiting on the answer and will let you know. Hoping your aches subside and you can stay on this drug and keep your visitor at bay for a really long time hugs, Sharon xoxoxo4Views0likes0CommentsRe: Hair Loss?
Waving.. Sort of like the Pantene moment. It won't happen overnight, but it will happen LOL.. Such a strange place to be waiting and hoping it will not go but also just wanting it to be it over and done with. Sending you hugs.. (you never know, it may stay, there is always a small chance!!!) Sharon xoxoxoxoxoxoxox and xoxoxoxoxxo3Views0likes0CommentsRe: Attempted portacath insertion
Hi Christel, Well, that is really crappy indeed. So much going on and now having to return. I am surprised that they did not have a radiologist guiding the procedure but am unsure where you were getting it done. I would be having a chat with the hospital to discuss the 'part 2' of all this. Ports are really very useful and PIC lines can be too but can be a little more intense to maintain and can be knocked and moved more easily. A port only needs to be flushed every 4-6 weeks and normally cannot move. I also know a few ladies who have not been able to use ports. It can really just depend on the individual. For me, it was a little uncomfortable going in at the beginning but now I am so glad I had it done as it has saved my poor very skinny veins. You should indeed discuss the best options with your team. I wish you luck and hope your team can get you sorted our really really soon. Sending huge hugs Sharon (pink66)2Views0likes0CommentsRe: How to manage your notifications
Just a little addition to this post.. If you untick this box then you will not only stop the daily posts but the weekly posts and also the broadcast messages. This means that you would need to pop in to check what was happening rather than getting an email to notify you. Bonus is, if you choose to untick, you always have the choice to re-tick the box if you are missing too many posts. LOL, I feel like I am in the Matrix, would you like the red pill or the blue pill. :) Cheers, Sharon (pink66)4Views0likes0CommentsRe: Its all so new
Hi Paulan, I can only imagine the stess you find yourself dealing with right now. The roller coaster that is Breast Cancer is certainly not a fun ride!. The waiting is always rubbish and getting a letter that you have no idea what it means will only be adding to the situation. For now try to spend time doing things you love to help you to relax and also it could be worth a call to your doctor who is treating you for your CMD, it would be good to keep them in the loop. Six days will no doubt seem like the longest time on your life and I am glad you have been able to get an appointment sooner than they planned. No doubt the Dr will go over the test results and if there needs to be further identification or better still to begin the organisation of your required treatments. For me, once I had a treatment plan I was able to focus on that and felt much better over all. If you have not already done so, get BCNA to send out a My Journey Kit as the information in there is very informative and helpful and will will no doubt help with the "you don't know what you don't know" and help you get some questions together. Is there anyone who can attend the appointment with you? that is always helpful too. I am sending you warm comforting turtle hugs and hope they help to give you just a little more sleep while you wait for the next step to begin. hugs Sharon (pink66 - Super Turtle)4Views0likes0CommentsRe: Cosmetic changes to the landing page
Hi Cosette, I usually head for the button at the top but anywhere would be fine and one button with all the choices would be awesome. Banner in the middle, have only used it sparingly (though am usually signed in and miss that page most times) perhaps it is handy for new visitors??? share button.. LOL never thought of it.. always just copy the link and take it where i need it to be.. (to be fair, I dont social share much - only from my blog which is now automated so I dont have to think about it much)4Views0likes0CommentsRe: Little things, big things
As a 'wish list item', A 'how to menu'.. simple things like how to go to your groups.. click user name, profile, groups then choose is an example of something you don't know until you have fiddled around and tripped over it. A help menu if you like. Many people who come into the network are at varying levels of computer skills and a help menu could lessen any issues that may arise. It can be daunting to learn a new system and I think this would be a great addition to the system. right next to the posts / groups / members section mmm that may not be a thing but unfortunately turtles think big sometimes Cheers, Sharon0Views0likes0CommentsRe: Little things, big things
Hi Cosette, mmmm tricky question.. But I have had feedback from members and I have experienced it often myself. You create a post, finish it and press post, the pink circle of 'waiting' begins and does not stop. If you press post again it either does nothing or comes up with a window saying 'something went wrong'. When you then go out and come back in again and check it has indeed posted. Not everyone thinks to check as it says it went wrong and then we end up with a double post. This was before Christmas but today it happened to both of my posts that I have just added to the LWA/SBC. If the source of this error could be located somewhere in the 'haystack' it would reduce the frustration of many members (a few have said they wont post again because of it :( ) I have another post to do later, if I can get it to do it again (Look out, is Murphy anywhere here?) I will screenshot it for you Cheers, Sharon4Views0likes0Comments
Groups
Living with metastatic breast cancer
This is group for people living with metastatic breast cancer (also called stage 4, secondary or advanced breast cancer). This is a safe, understanding space to connect with others who truly get what it’s like to hear the words that you are living with metastatic breast cancer. Together, we offer each other strength, compassion, hope encouragement and a place to talk openly—whatever you're facing.
