I’m ok so far thanks @felineoptimist. Glad you’ve finished and found it doable. I’m so glad I was selected for 5 days too - already the idea of driving there and back for more than 5 days sounds like a lot. I felt quite tired yesterday but because of the time and a slight delay I ended up at the worst time for traffic and I’ve been avoiding that mostly ! I did feel a little emotional too - I heard someone else say that and I can kind of relate. You’re just laid there with this machine circling round you which is so unlike any other experience isn’t it - somehow (and I know this sounds silly) but it made me realise i have (had ?) cancer all over again !
Feels a little tender today but I’m sure it will all be fine and, as you say, pass by in a flash. I have also heard about the side effects kicking in when they would have (towards the 15 days mark) I guess we’ll see.
I can relate with the prescriptions admin - I had a little of that too, it’s all sorted but there is some life admin that goes with all of this isn’t there
So glad to hear you’re doing well @foxgem and back driving too - that’s such a boost isn’t it, being able to get to places under your own steam. Choosing not to and being unable to is a totally different thing. I’ve been parking a little bit away from the hospital too - trying to keep myself moving as much as possible to combat the potential fatigue from radio.
Sounds like you’re making good progress in so many ways which is great to hear. I’m a side sleeper too so not being able to do that for so long (and ongoing) must have been a challenge. Hope you can get back to your usual way of sleeping soon - it makes things feel a little bit more normal. Sleeping is still an ongoing thing with me but that’s mostly the hot flushes. I’ve booked in for some Auricular Acupuncture via the local cancer charity starting in a few weeks - I’ll report back if it works !
Good luck with the dexa scan today and enjoy your chocolate treat - you definitley deserve it .
Dexa scan was nothing to worry about at all. Super easy. Lie on the bed and the machine slowly and quietly goes up and down over you. Easiest 5 minutes so far!
Yes please definitely report back on the acupuncture @clarabelle1 I have heard lots of good things about it but I havent looked into it myself yet
Seen oncologist today who has confirmed that the histology results came back even better than they expected. Plan going forward is for 12 more rounds of Phesgo (targetted theraphy for HER+) and radiotherapy as the initial tumour chemo destroyed was large.
Saw RT consultant. plan is for 5 days RT just to mop up anything that might want to cause a problem where breast was just to be cautious. No Rt needed under arms. 12 rounds of Phesgo and so far nothing on top as my bodies response to chemo has been more than successful.
Starting to think I may be able to think of going away and even being in the sea again later next year. Still cannot believe that’s even possible given Ìt looked so grim based on biopsy results and initial scans.
I’ve reached that strange part of the journey where I’m supposed to be “normal” again and I’m not sure I’m doing it right
I have no bloodtests booked in, no follow up appointments until next month and then 1 again in February. I collect my pills once a month from the chemist. And that’s it
It feels very strange and I’m a bit lost to be honest. It doesn’t help I quit my job before my first lumpectomy back in December so I literally have whole days to myself. I am supposed to be job hunting but I am struggling to jump back into a nothing job. I am worried I won’t be able to keep up with people. I am worried I won’t care enough about the job etc
I am clear now to do more exercises but I am reluctant to for fear of injury
I don’t over eat and I’m walking lots and yet the steroid chemo weight still lingers
What next? I really don’t know. How is everyone else feeling?
Ditto! I return properly to my job in education after half term but finished radiotherapy last Thursday. But no appointments till Nov and no scans etc in the diary.
I have been tired this week - bed at 9pm for a normal night owl! So far radio has been a walk in the park by comparison to chemo especially the pesky taxel based one. We have a break in Cornwall booked for half term and I am threatening a swim in the sea if my boob plays ball and doesn’t have any skin issues (looking good so far).
I have now been on my Anastrozole for the month although there was a four day break when my prescription ran out and my GP had not been advised of it. I chased with my oncologist who said “You don’t need to call me for this just call your GP”
“Err I did but you failed to advise them of my meds”
“ahhha yes that would cause a problem!”
Anyway I am now on the GP pharmacists Anastrozole which is a different brand….. maybe this is this months symptom rollercoaster for me to keep an eye on?!
I do feel in limbo and second guessing random aches and pains. Trying to remain positive and focus on future plans but can’t help but have reoccurrence thoughts as weaker moments. I guess we have to learn to process this past year and move forward….. easier said than done at times!
I agree with you @foxgem this is a strange time. Like @joodles I finished radiotherapy last week. It is so much easier than chemo but I too have felt more tired this week and even fell asleep today ! I went for my Auricular acupuncture this week too - hard to tell yet if it’s made any impact but I can say that I had a hot flush during the treatment . I have 4 sessions and then can assess if I want to have a further 4. I’ll keep an eye on how it’s going and report back further if it does work. I’m gradually picking up my life - not back at work yet but have spoken to work - they don’t expect me back and I’m giving myself some grace. I need to be in a good emotional space for my job and I know that I’m not there yet. I’ve decide to talk to the local cancer charity support team about emotional help and take it from there. I have been seeing friends and having time away when I can. I just know though that I’m a different person now - not sure if all the changes are temporary or forever but again I’m trying not to overthink right now. I know my body still needs to heal as do I. It’s hard to know though which parts of my old life I want to pick back up again and which I’m ready to leave behind. Alcohol has been consigned mostly to the past - makes me feel rubbish and I’m still having nice times without it. I’ve still got the Ribociclib decision to make so that’s weighing on me a little. I think not having a clear schedule of appointments and goals is a bit destabilising after a year when someone else almost took over your life schedule. I feel good to have lots of it behind me (although all the meds are obviously going to be part of my life for some time to come ) and I’m happy to have the outcomes I’ve had but I know I need to take a bit of time to absorb what’s happened and how to live in my new reality - as you say - all a bit strange, glad it’s not just me
I’ve just got back from my first holiday! Neuropathy played up a bit with all the walking and sightseeing trips (Malta) but it’s such a big step back to normal’ Top Tip: if you know your passport is going to have to be renewed within the next year, get it done BEFORE the chemo! - I have to live with that photo for 10 years now!
Penny Brohn address the post-treatment scenario, I believe, - and I think they offer something here, too. My daughter has used both organisations (counselling with PB) and found them helpful. I was retired already so that bit was easier. I know I cant (and dont want to) pick up exactly where I left off, though. I have different priorities now. I do get tired more than before, too.
Re abemociclib (sp?) I ve been talked into giving it a go in a few weeks. Letrozole is OK and this may be, too. My persuasive onco said dose adjustments are normal and frequently do the trick but she would not expect me to put up with sfx that got in the way of me doing everything I want to. That’s the difference from chemo, she said. Ribociclib is tougher, apparently.
We’ve all been through so much and done so well! XX
Morning, ladies @foxgem … I feel exactly the same!!!
I finished chemotherapy in August, had surgery beginning of September, had NED last week - but - feel nothing!! … because I’m TN, I’ve got radiotherapy (5-10 sessions) and continued immunotherapy until April next year (because obviously there’s nothing else for reoccurence) … no dates confirmed yet of which is stressing me out massively!!! … I’m going back to work on the 9th November of which I’m both looking forward to and also, nervous about (I worked throughout chemotherapy and am just taking 8-weeks off for surgery) … I feel lost in every way … I’m not really sure who I am, how I feel, everything really … it’s the strangest feeling … and I know it’s very normal for us in this situation …
Butting in from April starters as your post really resonated with me. I completely understand how you feel @foxgem . I’m 6 weeks post double mastectomy, had my first Herceptin injection this week but no other appointments for a while. Part of me keeps thinking, what now? We had to be so strong throughout some pretty horrible treatments which took all our energy just to keep going. I feel like I held it together during chemo and surgery because I had to and am only now starting to realise what we went through.
Be kind to yourself and take the time to think about what you want to do work wise. There are Breast Cancer Now Moving Forward courses that you might find helpful. I went to my local Maggie’s centre recently, they offer lots of groups and courses.
I’m with you on the weight loss front as well. I can only walk currently, no weights or other exercise allowed. My stomach may be flatter from DIEP but the back fat and bingo wings are still there!!
@foxgem Ì honestly think it’s okay to have some time to process what you have been through. Admittedly that is a lot harder to do if you have financial constraints to manage on top. try and forget the old normal as that was BC (before cancer) and allow yourself to be the slightly messy mixed up ball of stuff you are now and with time that will unwind and form the new ‘normal’. Whatever and however that is for you.
Not easy, not fun but it’s part of human grief for who you were. ITs also okay to reach out to others for support as and when you feel able to. TBH if it had not been for the ongoing encouragement and support of others Ì would not be writing like this. You have endured more surgery than most, chemo than most and being told you have that BRAC gene when you already have children is a lot. add that to any other concerns you already had to bear and I get why work looks meh, the day to day concerns of others is meh. cannot comment about Chemo weight gain as side effects caused me the complete opposite.
Do what you can as and when you feel able. it’s okay to take some weeks to begin to navigate this strange country that seems familiar yet different that you now find yourself in. Find a way of doing that is some kind of excercises that brings you joy. I used to hill walk but that’s still a bit much and I have yet to solved the rubbing rucksack straps on new scars so I do shorter walks in large NT parklands and gardens. OKay I admit it after I do end up having a latte and scone but that is a good excuse to sit down in a chair in a nice for me setting. Never liked coffee but chemo changed that too. Means I can now go to Costa and enjoy a latte with my daughters. That’s a new normal plus.
NOt everything new is great. ẞTill cannot wear anything on my skin, Ìt reacts to anything but organic cotton clothing (argghhhh the cost thank all that is good for SeaSalt sales) Still have not found a bra that works that my skin likes.
Still working through phesgo for 11 more rounds and RT is booked to begin on the 28th which I have been assured should be a walk in the park compared to how badly my body reacted to chemo for HER+.
May you find that something that gives some joy each day, you have come so far and been so encouraging to others. May you have some time to meet with and be the you that you are inside after so much hard plain slog.
@wibbles Hello! Just thought I’d mention after an extensive search & way too much ££ I don’t have my winners (with some chest lymphadema as well) have been the Uniqlo built-in bra vest tops & not sure what surgery you had but I’m flat on one side & the SKIMS mastectomy bra is the sofest most comforting bra I’ve found
I agree @foxgem its a weird world after cancer treatment. I have to say I’m just trying to get my normal back and forget I had cancer - but I know that won’t work for everyone. Am back to running and hiking and weight training and seeing lots of friends and putting time in with my elderly mum and supporting my daughter who’s splitting up with her boyfriend….life kind of goes on. I fill my days no problem with exercise and cooking and reading and learning Spanish…I am vaguely considering voluntary work perhaps after Christmas if I can find something where I think I’d add value and not get bored. I’m sure you’ll find your new normal soon. As others have said you’ve had a tougher time than most with extra surgery etc so give yourself time to heal in all senses of the word. You’re strong and you’ll find your way
I came on to ask about recurrence fear and side effects and almost burst into tears reading your post as I feel exactly the same. I finished radiotherapy at the beginning of September and have started on both letrozole and ribociclib. I’ve had lots of side effects including joint pain and back ache but as time has moved on and the pains remain I’ve convinced myself it’s bone mets. I spoke to my oncologist who said nothing remotely reassuring (which I guess in inevitable as he doesn’t know) and suggested seeing if it gets better over next couple of weeks. I came off such a high finishing active treatment and am now probably the lowest I’ve been since diagnosis worrying it was all for nothing as it’s already come back. I have no idea how to manage these feelings and definitely can’t see how I will ever feel normal and care free again?
. I have 4 sessions and then can assess if I want to have a further 4. I’ll keep an eye on how it’s going and report back further if it does work. I’m gradually picking up my life - not back at work yet but have spoken to work - they don’t expect me back and I’m giving myself some grace. I need to be in a good emotional space for my job and I know that I’m not there yet. I’ve decide to talk to the local cancer charity support team about emotional help and take it from there. I have been seeing friends and having time away when I can. I just know though that I’m a different person now - not sure if all the changes are temporary or forever but again I’m trying not to overthink right now. I know my body still needs to heal as do I. It’s hard to know though which parts of my old life I want to pick back up again and which I’m ready to leave behind. Alcohol has been consigned mostly to the past - makes me feel rubbish and I’m still having nice times without it. I’ve still got the Ribociclib decision to make so that’s weighing on me a little. I think not having a clear schedule of appointments and goals is a bit destabilising after a year when someone else almost took over your life schedule. I feel good to have lots of it behind me (although all the meds are obviously going to be part of my life for some time to come ) and I’m happy to have the outcomes I’ve had but I know I need to take a bit of time to absorb what’s happened and how to live in my new reality - as you say - all a bit strange, glad it’s not just me 
… I feel exactly the same!!!
… because I’m TN, I’ve got radiotherapy (5-10 sessions) and continued immunotherapy until April next year (because obviously there’s nothing else for reoccurence) … no dates confirmed yet of which is stressing me out massively!!! … I’m going back to work on the 9th November of which I’m both looking forward to and also, nervous about (I worked throughout chemotherapy and am just taking 8-weeks off for surgery) … I feel lost in every way … I’m not really sure who I am, how I feel, everything really … it’s the strangest feeling … and I know it’s very normal for us in this situation …