Hi Carolina, was wondering how things are with you now? Did you go for cyberknife?
truffle shuffle, are you feeling any better?
Do let us know how things are going…you are all often in our thoughts…as are you too, Lissa never knew
hugs, Moijan???
Hello Truffle,
Ashamed??? Well, I’m glad you came on here. Please do not beat yourself up, you’re allowed to feel the way you do right now… there are no rules! I recall going through the same thing & it’s possible most of us on here have. Before I started chemo, my oncologist seemed vague about my future. It wasn’t her, it was me. I don’t know if it was my interpretation of her wording, attitude… whatever it was, I thought there was no hope so I refused to ask about time. And it didn’t help that when I saw ad campaigns about cancer or read articles, etc. there were all these smiling, courageous faces that I felt I had to live up to. Nothing makes me more happy & encourages me more than to see the smiling faces BUT the pressure I put on myself to be brave was incredible! Anyway, whatever you’re feeling is valid… the unknown is scary! Feel free to rant & rave on here. Take all the time you need. You’re no wimp! ?
Much love, Lissa ? xxx
Thanks Moijan. I hope you’re doing well too.
Also thinking of you too Carolina. Let us know how you’re getting on.
Much love ? xxx
Hi Lissa, Truffle and Carolina,
was reflecting upon your exchanges, truffle, with Lissa, Your trepidation is very understandable…and maybe your feelings could be a kind of self preservation mechanism? You know…‘im afraid to expect too much…in case’ . i think we all do that at times and was thinking that must be such a very lonely place to be…wish we could sneak in and whisper reassuring words into your ear xx
but, Truffle…‘what if’ ? What if things work so much better than you fear?
I did say to my onc, when my mets came 3/4 years ago, ‘please, never tell me I have say, only 6 weeks to live’ and he said ‘we dont do that’…I was really happy to hear that because although Ive always wished to know the score re my diagnosis…I also know that if anyone said that to me…chances are it would happen, because when a doctor says something…we tend to believe it! And that takes hope away psychologically.
the other thing is…there has been research that shows that very sick people who were pronounced at high risk, who attend support groups have lived twice as long as expected…this forum is a kind of support group
and I really believe that sharing with others in this way helps us survive xx
Lissa, you asked how I was,I am apparently improving on Eribulin…am awaiting my reg tms result this week…
i have to stay on it ‘until it stops working’ before he said that…I had hopes it might have been a miracle cure…but his words have eaten some of that hope away…see what I mean?
If I think more laterally…I can see that people do sometime get cured of this Buggr…and in relation to Truffle and Carolina…have read about improvements that wbr and other treatments can bring about.
And you, yourself appear to now be on a very hopeful path xx
Carolina, am sorry we havent heard how you are…but my guess is that wbr takes a little while to recover from…I would expect you to feel a bit tired. Lots of love and best wishes…hang in there xx
Moijan.???
Truffshuff…just wanted to echo what the others have said…you are not a wimp and you shouldnt be ashamed. You are a normal human being faced with the biggest nightmare we all dread and you are having perfectly normal reactions. We all know how you feel…please use us as your punch bag. Hope you start to feel a little better soon. Lots of love. x
Stresshead
have private messaged you
Moijanx
Hi again Truffle…just did a little searching and came across this oldish thread on a website(2012)
well, there seemed to be quite a few positive answers re wbr effcts, from doctors on the page…may think its worth a ?
cancergrace.org/radiation/topic/brain-radiation-success-rate/
Love and best wishes
Moijanx???
Hi lovely ladies,
Apologies for not coming on here for a while. Had a busy week last week - think I overdid it - then had chemo on Friday so am feeling a little rough & miserable. Also did my back in so in pain! 
A good excuse for me to start watching House of Cards so thanks for the suggestion Truffle. I’ve heard it’s brilliant but I always come to these things late. ?
Hope you’re all doing well as can be. Praying for good news for you Truffle. ??
Take care until…
Much love, Lissa ? xxx
hi Lissa , Moijan,
Got 5th chemo tomorrow , hope I get a liver scan then , no clues if it is working or not, just hope it is then they will start the brain treatment . I am feeling a lot more calmer now, think we adjust to anything given time dont we ?
Just had a good weekend in the lakes, so chilled , but got to get bak to house of cards, loving it , hope you ladies are feeling good. xxxx
take care , keep well xxx
Hi Truffle,
Fingers crossed xxx
what seems to happen is that after wbr, ladies don’t let us know how it went/ how they found it etc. I guess it also makes them a bit tired.
If you feel up to it afterwards, Truffle - do
Let us know how it went, obviously only if you want to xx
Am so glad you feel calmer… yes that website gives a pretty good description of the process and that people find it helpful
Hopefully you will get good news from your scan xx
Moijan???
Hi Moijan,
How are you doing?
I’m feeling a little better thanks. ? Managing to move around a little more. Getting out of bed’s a hilarious task though… picture, if you will, a giant tortoise stuck on it’s back waiting hopelessly to be rescued.
??
Yes, I’ve both an MRI & a PET/CT within the coming weeks. Can’t wait to have them but am terrified at the same time! ? Thanks for asking.
Truffle, I think Moijan’s right. Sounds like it can be tiring post wbr so there’s little choice other than to rest… loads. CyberKnife exhausted me but not straight away. I imagine wbr is more immediate. All the best with number 5 tomorrow & hope you can have a scan soon with good results.
Stay well everyone. And please keep us posted on how you’re all doing.
Take care until… ???
Hi Marnster,
welcome to this thread xxx
lovely to hear from you.
Currently, there are three ladies on here sharing brain met experience, Carolina, Lissaneverknew and truffleshuff…
Oh, and lovely Stresshead, Charys, Zena and other cuties pop in from time to time xx
Hugs, Moijanx
Truffle!
Thank you for sharing that snippet of news… yes it’s possible… there’s a lot about many of these drugs that they don’t know. Your current one is pretty powerful
At any rate…, an improvement that you have noticed is excellent news.xxx
Everything crossed for a continued trendxx
Welcome Marnster,
In the nicest possible way, we’d rather you didn’t have a reason to join us but since you do, we’re glad you chose to & you have our support. I’m so sorry to hear you have a brain met & wow, what a lot you’ve had to deal with over the last four or five months! Your brain met case sounds similar to mine & I’m hoping the fact that you’ll actually be discussing surgery with the neurosurgeon is a good sign - that’s what the medics said when I got my first brain met. He was successful in removing my met & then CyberKnife radio was used to zap two other tiny inoperable spots that came up after. Important thing is you acted quickly after feeling the numbness. I mentioned the numbness in my arm to my medical team but it was four months before they made the correlation between that & my brain. Am sure you won’t have to wait long before a treatment plan is in place & there’s always hope it will be more successful than the last.
By the way, where are you thinking of traveling to? ?
Keep us updated when you know more & will be thinking of you in the meantime.
Moijan , yes good news is always welcome so you having a lower tms count is encouraging & I’m keeping everything crossed the MRI shows improvement too. Completely understand the reality that a lifetime of chemo is frustrating but it is what it is. I’ve resigned myself to the fact that my hospital is my second home & will continue to be from now on. I certainly shouldn’t complain considering you only have one week off out of three! I’m on Kadcyla (once every three weeks) & up until now, my scans have been clear. Don’t know how confident I feel about the upcoming scan results though??!!! I shudder every time I feel the slightest twinge of pain or something unrecognisable going on in my body & the thought of changing to another chemo is daunting. Like you say, we’ve no idea what’s around the corner.
Truffle , brilliant news re your vision. How unsettling it must’ve been so onwards & upwards for even clearer vision. My blurry vision is almost gone so anything’s possible. ?
Ladies, wishing you all a fab weekend. Very grey in London so I’m staying in, haha!
Much love, Lissa ??? x
Hi Lissa
You really have been a Godsend, by joining this thread! I’m sure your experience and feedback must be quite inspirational to Caroline, Truffle and now Marnster. Even though every case is different, there is likely a common thread of just how very scary it feels to think you are maybe the only one battling through this particular jungle.
The one thing that hit me when I joined in this thread was that Brain mets feel even more scary to most of us, because maybe they are the one thing a lot of us have been dreading… I mean, we use our brains to mentally outwit negativity and work out our choices. I suspect that this could account for the smaller amount of ladies chipping in…
Which is quite ok… hopefully they will see that talking about scary subjects can be a way of battling them…also any ladies with brain mets who skim through but don’t feel able to post … hopefully they gain some comfort and information along the way. Xx
Hope everyone is having a good weekend, yes Surrey is also grey, but less cold now.
I’m still envious of the lovely Australian weather, beaches, food etc that Marnster has access to xx
moijanxx
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Hi all,
Welcome to Marnster! I’m so glad that a ‘gaggle’ of people are coming onto this thread, started by Carolina. Well, obviously not glad you are here, but glad you’ve found a place to add your voice, share experiences and get some support. Truffle-shuffle…that IS a great bit of news…that you’ve actually felt a noticeable change to your vision…long may it continue! Strength to all of you on your continued fight, you awesome group 
Hi , I’m still here; in awe…
Lissa , you’re fab … everything crossed for scans and try vikings( Netflix) too its gory but brilliant xx
Marnster… **bleep** crap time… hate this cancer so much …but as Lissa said good about surgeon, and yea where you thinking of going off to ???
Truffle … double of Tom hardy sounds good but not much else … glad that chemo has gotta hold of that and stopped it … it’s magic when it works let’s keep that going and get you driving again xx also love house of cards … so intense ?
Carolina , I think of you most days , I hope you are in a far flung land sipping cocktails but if you are not and need anything just ask xxx
Moijan … brill about tms falling long may you get good results, including those pesky scans xxx
I’m not much good to anyone and my words are just words I know that . I don’t have the same battles as you guys do. It’s just getting the bloody bad days over and done with and out the way as I’m only doing the good days from now on.
((((((((Hug)))))))) for all of you xx
Hi Zena
Sorry you are feeling ‘bleepy’. So many relevant words I could shove on here…but the moderator woulld likely intervene…actually if … WE ALL agreed to have a swear day, we could say that’s what we were going to do… and test it out! Hi Lissa, Truffle, Marnster, Carolina, Charys, Zena… Whaddyasay, Shall we have a swear day together? What day shall we book? We could set a time… how about??? Wednesday this week…, ok ladies… on Wednesday we will have a ‘gloves off’ swear day, but we’ve all got to do it ! Who will go first I wonder?
Hugs Moijanxx
And naughty Zena, stop knocking yourself… your words are just fine xx