Morning ladies. Hoping you’re all enjoying the lovely weather.
Just popping in to see how your appointment went Michelle? Sending you positive vibes and a hug. Xxx
I hope everyone else is doing well. Xxx
Thsnks for those positive vibes Angela was ok have to ahave a couple more mris of neck in different positions to check how much the cord is compromised when moving going to ct brain too probably ruling out all other options for symptoms will see me in 8 weeks with further results and plan, if i get worse in meantime though he says i have to get in touch and they would admit mel told me of red flag symptoms to be aware of but i think if im careful etc i should be fine till i see him next oh the joys!!!
Its been lovely hasn’t it bet your enjoying the sun too xx
What a carry on Michelle. When will we get some peace. ?
At least they seem to be keeping a close eye on you. You’ll just have to try and switch off from it until you’re next scan is due. And hopefully you’ll manage the pain.
Whenever I mention pain I just seem to be brushed off. Like it’s not really important given the circumstances. I’m not in bad pain like you mind, but shouldn’t be feeling like this at 44.
Anyway, my daughter is just about to do my gel nails. Getting myself prepped to go for a few drinks in a beer garden then a curry later. That doesn’t sound like too bad of a Sunday does it. ?
Not letting the anxiety monster take over and i remember someone along time ago telling me pain is a controlled emotion i know when your distracted you don’t notice it as much haha and yours is probably just different not any less than mine if you know what I mean i hope you have a brilliant time at the beer garden its definitely the right weather for it and bloody why not eh!!! Cheers ??
Speak soon xx
Hi everyone, Mishy I hope your pain is under control, it’s not fair to have to go through all this, but at least it sounds like they have a plan. I also cried buckets in Mamma Mia 2 and so did hubby! Loved it. Angela and Carole, hope you are doing ok too. Kimi you sound busy busy busy, but at least some of it is fun! I’m still on gemcarbo and having treatment postponed almost every time but am ok in between ( please do your best blood dance for me on Thursday!). Off to see some old friends today in their new (old) house in Wiltshire, don’t you just love looking around people’s houses! Big hugs to you all.xxx
Hi Tatanya thanks i feel better now i know that the wheels are in motion it was definitely a tear jerker wasn’t it but a lovely film i am sending you ??? this fot Thursday no delays fingers crossed when you want to get it done and pleased you are ok in between treatments is it in cycles like the chemo you were in last time??? I think you are a real trouper all if you having to do his actually
Enjoy looking around your freinds house and the day ojt of course its going to be lovely weather again so we need to make the most if it xxx
Hi ladies,
Well I’m back on the chemo wagon. Tablet based capecitabine this time. I also just scraped my way onto a clinical trial for metastatic TNBC. Only a 50% chance of getting it or the placebo but we’ll have to see I guess.
Doesn’t seem to be as bad as the tax/carbo or the EC fortunately but the secondaries themselves are causing no end of pain. I’m on slow release oxycodone to help with the hip/leg/spine pain but I’ll be honest, it’s getting worse and quickly. Guts are in chaos from the handfuls of pills I take daily and I wheeze when I breathe in from the lung mets. Sorry kinda been a rough week so feeling pretty low about it all.
Friends pooled together and bought me an all black, easy to manœuvre wheelchair, I couldn’t stop crying when they gave it to me.
Mishy are you in the TNBC warrior group on fb?
My uncle did a 100 mile bike ride for the Christie and raised £771 which I’m pretty chuffed about.
I hope you’re all as well as you can be and although I don’t post often, you ladies are often in my thoughts. We started this journey together and although we met through awful circumstances I’m so pleased to have met you.
Hiya Missa do not apologise for feeling weepy you are having such a tough time atm and i cannot begin to imagine how it can be affecting you so you must be kind to yourself , your freinds gesture is a reminder of just how lovely some people can be how lovely they did this for you so you can get out and about with your family im nit in Facebook Missa but know that the group is meant to be a fab one im nit in WhatsApp either i know some of the girls i met at the maggies and hospital are but i am on twitter if you are on that ir any of you July girls
The soine pain i can empathise with you a little on that and don’t have mets its so bloody frustrating knowing thst my lovely July girls are going through this its so unfair i want you all to know i hold your hands wherever you are sending you ??? and positive vibes xxx
Re the trial missa why do you nit find out which group you are in and are there no others with guaranteed treatment i know that there are different trials going on but don’t know if it is in different trusts and certain criteria to get them xxx
Missa:heart:
Sorry beautiful that you are in pain, have you spoken to your team to see if you can have any painkillers/morphine? That’s a beautiful thing that your friends have done with the gift And positive news about the clinical trial ??you will be monitored closely won’t you even if you are on the placebo? I take cbd oil and black cumin seed oil as a tn, have you tried either of these? ???we You and always here for you ???Shi xx
Missa, so sorry you are having such a hard time. Do press them on the pain relief. Who’s looking after this side of things for you? Sometimes the GP is good at pain management, or else the Macmillan nurses can help. Don’t be shy about asking anyone and everyone until you find something that works. And fingers crossed for the cape, I know some people have had very good results and minimal SEs.
How lovely your friends are to get you the wheelchair, and your uncle for fundraising. Aren’t people amazing! Sending love.
Morning ladies.
Missa I wish I could give you a hug so I’m sending a virtual one and crossing everything that this clinical trial works for you. I hate that you may be on a placebo. I understand the need for this sometimes to eliminate the power of mind possibility but for secondary patients it just seems like too much of a gamble.
They say 30 to 40% of ladies with primary bc will go on to develop mets (nobody tells us that) yet only around 3% of government funding for bc goes into secondary research.
It’s absolutely shocking that there aren’t more treatments available. And much much more needs to be done for tn ladies. It makes me so angry.
Sorry for the rant. When I get my head around my new situation I’m going to start campaigning or something. Haven’t decided what, but feel I need to be doing something rather than just sitting back complaining.
On a nicer note, the wheelchair, what a great thing for your friends to do and what a lovely uncle you have. I’m hoping the cape works wonders for you.
Michelle I’m on Twitter. Stupid long name
Angelao56980027
Good to hear from you tatyana. Hoping your bloods were good this week.
Good to hear from you too shi. Hoping we all have a lovely weekend. Xxxx
Hi Angela, yes thanks my bloods were fine so I got my treatment, but a reduced dose in the hope of not hitting the blood so hard next time. I’m happy with that, if having a smaller dose means it doesn’t keep getting postponed!
What I’m less happy about is that they’ve finally given up on my veins after repeated trouble with cannulas and this time some of the chemo fluid started leaking from my poor leaky vein, you can’t have that! So they sent me straight down to ultrasound to have a picc line put in, then I came back and got what was left of my chemo dose!
I was hoping to avoid a picc this time cos it’s just a hassle, no swimming (but I wasn’t swimming anyway because of infection risk with my feeble neuts), an awkward shower sleeve which I hate with a passion, and an extra weekly trip to get it flushed. But hey, at least I’m spared all those needless needles!
I so agree with you about the lack of attention to secondaries and especially TN. After my first cancer diagnosis I eventually figured out that what they were really saying is that it may never be cured, only if you are lucky you’ll die quietly of something else in old age before it has time to get you! But I don’t mean to be too pessimistic, because of course for 70% of people it never does come back!
Morning tatyana.
Good you could have your chemo but sorry to hear about the pic line. ? could you not have a port? I’m not 100% sure but it seems the in America this is the standard now. A pic line can effect holiday insurance? And as you say things like swimming.
My veins are also knackered. I absolutely dread getting bloods taken now. You’d of thought I’d stuck an orange up my arm the last time my gp took it.
About the 60 to 70% who are apparently cured. ?. As most women who get bc are over 50 most of them just die of something else before the cancer wakes up. I’m not sure I believe anyone is actually cured.
Here’s hoping that these TIL and immunotherapy trials can actually bring an end to this disgusting disease.
I think if more people knew the actual true figures then more money would be put into secondary treatments. Here’s hoping. ? xxx
I asked about a port and in theory they would do it, but apparently you have to wait ten days for the implant to heal before you can get chemo, and they didn’t want to delay anymore at the moment. Maybe when I’ve finished my planned six cycles of gemcarbo ( this is number four), depending on what’s next!! It does sound like a good idea, I met a lady on the ward who showed me hers and was thrilled with it!
It’s good that at least they’re open to the idea tatyana. I really hope you manage to get one. The pic lines seem awful. Another one of the crappy things we have to bear. Xxx
Morning ladies Tatanya good to hear from you sorry about the picc line how frustrating Angela hi i will look you up on Twitter today!! Reading through the recent posts from all of you has made me feel so frustrated i can’t believe that a trial offered for secondries would have a placebo i know they have do obviously do the trial but surely they should make shre if you have multiple mets they would make sure the drug is given when i finished my treatments i practically begged my onc if there were any trials iht the for TN prevention trials could i go on but not, i agree too tgey are so flippant to suggest that they think you are cured when actually thats not quite often the case my family think I’m negative when i say i have cine ti terms with the possibility that mine will come back it may nit also, i know so many who have and it it rubbish to think that still in 2018 this happens thank god for this forum and everyone on jt, its a scary **bleep**ty cruel disease i truly hope as research advances they can offer more i am just pleased to hear that you are all tolerating the drugs Missa hope you are feeling a little better today sweetie fir now kadies ??
Hi ladies
Missa I’m sorry you are having such pain and problems. I can’t imagine how you are coping emotionally and physically. Make sure you get out in that wheelchair and enjoy the sun, trees, flowers etc. So good for the spirit to be out with nature.
Tatyana that is a pain having the PICC again. I was so grateful for mine during chemo but oh so glad to have it taken out. Wouldn’t want one again! I agree with Angela perhaps the port would be better and less limiting.
I know I’m lucky not to have secondaries (that I know of) but it is always there in my mind and I still find planning the future is hard and don’t know what to say when people ask if I’m all over the cancer. I feel like I’m tempting fate if I make out that I’m cured but on the other hand don’t want to believe that it could possibly come back. We just have to live for the moment and hope for the best.
Hope you all have a good weekend. My husband’s birthday today so we are off to the theatre tonight and family round tomorrow xx
Carole thats exactly how i feel i hope you are well apart from your foot and hope you have a fab time at the theatre and your hubby has a lovely birthday sorry for the rant before ladies it just gets to me for all if you it really does you are all such ??
Hopefully the sun will come back out today and we can all get iut and enjoy it Mussa you will be able to get out and about so much now apparently we are having an Indian summer this month i hope so as it was chucking it down yesterday in Newcastle ?seeing my little Grandaughter today always guaranteed to make me smile that one!!! I cannot believe she will be one in a few weeks ?
Sorry Missa not Mussa xxx