There were a few days I was overwhelmed with the whole experience and sobbed, along with the regular wee cry’s in the shower telling myself it was hard but it was just a chapter to get through.
I had peripheral neuropathy during chemo, not unmanageable but discomfort with numbness in finger tips and toes. I’m 6 weeks beyond my last treatment and I have a little still present mostly in my toes, pretty sure it goes away rather than I just don’t notice it sometimes. Hoping it will leave entirely as I get further away from treatment.
I guess emotions for all of us with be up and down for a while, as we come to realisation with it all. I find it difficult because a lot of the time I feel fine, not back to normal, but still well, and so facing the prospect of further treatment, including surgery is daunting.
Thank you for the reply on the neuropathy, although I very much hope like you that the nerves will recover and it’ll disappear. I’ll let my medical team know, although I’m sure dosage on my final two chemo will be altered x
I’m on Day 3 of letrozole and so far no issues- I am on a 3 monthly jab Leuprorelin which hasn’t really affected me, other than “running slightly warm” but I’ve never been one to feel the cold so am not sure how much is the meds and how much is just me being me. The oncologist said letrozole shouldn’t affect me either as the jab doesn’t, so fingers crossed she’s telling the truth!
But today I collected my abemaciclib and am going to be brave and start that tomorrow . I’m almost as scared as I was before starting chemo - my oncologist has said that it’s much easier than chemo, but the list of and type of side effects seem just as bad, which scares me because I feel like I’m so much better than I was 2 months ago and I really don’t want to go back to feeling like that . Even though I know it wasn’t too bad overall, I know it did get me down. I have anti diarrhoea tablets and anti sickness to take as needed, and blood tests fortnightly to start with. I’m going away for a week on Saturday and really want to get back to work on the 23rd, but am worried it will knock me back again and I won’t enjoy my holiday or will be too exhausted for work . And I know my health is what matters and I mustn’t run before I can walk but I really just want some normality back and am so fed up and teary . Which I know is normal - I will stay positive and take each day as it comes, and I know my family and work will be supportive, but it’s just another niggling worry I really don’t want and I’m so fed up of feeling like a burden on everyone .
On a more positive note, the return of the 6 Nations this weekend (I love rugby - grew up in Gloucester, which is definitely a rugby city - we don’t talk about their football team ) and when I look back to how far I’ve come since the last 6 Nations I’m very proud and can’t wait to see where I’ll be by the 2027 tournament . I’m also looking forward to the winter olympics and am glad I’m still off work to enjoy them
Sorry about the rant - I just had to get it off my chest, and I know you all understand. Hugs to you all, I hope you’re all more “up” than “down” (which I am normally!) xx
just getting caught up, it’s so good seeing everyone reaching different milestones in all of the different treatment paths we’re all on now post chemo! I start radiotherapy next week, and I’ve felt reassured by some of what I’ve read in here regarding radiotherapy so I don’t feel overly worried about it so thank you all for sharing your stories
I’m right there with some of you around the emotions, I’ve been quite up and down this past few weeks & I think it’s all sort of caught up with me. However, thankfully the ups are really high so help balance out the lows. I’m just being kind to myself and accepting whatever emotions show up - we’ve all been through so much, so we deserve to give ourselves that space to feel whatever! I have had worries flair up though, I have health anxiety anyway and even though I’ve been told there’s no cancer my anxiety around health is still high so going to reach out to my team to ask to be referred for therapy.
Other than that, I have been trying to slowly ease myself back into life while taking into account the post chemo fatigue and not overstretching myself! Anyone else feeling the fatigue hard??
Glad to hear some people lashes have started coming back! I’ve been using UK lash and it’s working wonders helping growth so would recommend that for anyone interested.
I have another of my younger women support groups tomorrow so looking forward to that. It’s delivered in this local breast cancer charity that does lots of wellbeing treatments for women, so I’ve signed up for a sound bath next week and they also have a spinal flow treatment I’m going to sign up for once I’m finished chemo. They also do oncology massages and boy do I need a massage badly but that may need to wait for a while as not sure how the breast will feel after radio it’s such a great charity, so I’m feeling lucky. Does anyone else have anything like that near them?
I hope you’re all doing well, and have some nice plans for the weekend! Sending love
Morning ladies, lovely wet Saturday here!. I’ve been low key sorry. Totally with you on the emotional front this week. I’ve been trying to clear my parents house ready for sale and that combined with this has been a lot. I did a whole day Thursday and then was in bed by 7 aching with a temperature. My right arm right by the mastectomy scar is aching so much. I wasn’t even lifting with that side. It feels like a heavy armband if that makes sense. I’ve been told that it could be scar tissue setting in. The problem is I start radiotherapy Thursday and my movement is decreasing instead of increasing. Has anyone else had this?
I had peripheral neuropathy with one of my chemos but it didn’t last long thankfully. I would wake in the night to my thumb twitching on its own. It did settle before my next session and the team weren’t concerned.
Love the idea of a sound bath. I’m off to Maggie’s on Tuesday so will see what they do.
I’ll m with on the rugby front, If I’m forced to rest then at least there’s that and the winter Olympics on.
No worries at all @sunshine-smile I’ve not been on for a while either. I’ve been sent a form for my cousin to complete about the genetic testing and we aren’t even in touch (many years now) so I don’t know what to tell them there. Hopefully it won’t make a difference as she lives in France anyway and was treated there.
Happy belated birthday @schwartzwald did you celebrate at all?
Low key but still wonderful. Life returns a little at a time. 9 holes of golf, lost one ball, hit one tree, three putted twice. Went out for dinner at a local steak place and enjoyed a gratis limoncello. Home by 10pm, asleep by 11pm.
Hi all, just a quick question. Did any of you talk with your oncologist about further treatment after your final chemo?
I finished chemo in January and am not due to see my oncologist until end of March, but in my appointment last July he said that I would probably have radiotherapy after I finished chemotherapy. As the March appointment seems a long way off (10 weeks after final cycle) I emailed the oncology unit to see if I could get an appointment a bit sooner, as I discovered that there is a 12 week optimum time frame to have radiotherapy following chemotherapy.
Today I had an email from oncology asking if I was ‘planning’ to have radiotherapy, as if its my decision! I’m rather confused by the wording, as I thought that it was the oncologist who decided on which treatments I should be having! Any information or thoughts on this would be helpful.
Hi @pips12, I was told from the start that I would have chemo, mastectomy then RT. I would speak to your team. I wouldn’t be able to make that decision, we rely on what the specialists say. So I would give them a ring.
@pips12 i would phone today. E-mail is a little slow. Based on the tumour type, grade, size, and stage as well as your age it should be fairly clear if radiotherapy is needed. Also they should have given you a written treatment plan at the beginning. My team used the breast cancer now booklet plan and fulled that in. Did you have that?
Hi, @outdoorsy I have phoned my bcn and had a word with her this morning. She explained that the wording in the email may have seemed to be incorrect, and that the Dr is actually trying to push things forward. I get the explanation, but I thought I would see the oncologist f2f soon after chemo finished to discuss treatments.
I feel better having spoken to bcn and will now await the reply from oncology.
I do have a cancer research booklet but it was filled in each cycle and the Dr’s letter only outlined a possible treatment plan
@emma-jayne How is your arm now? Have you spoken to your team about it? I stopped my exercises after surgery for a week or two but started them again last week for radiotherapy so not sure if you’re still exercising or if that may help? The radio team may be able to advise. I started my radiotherapy yesterday by the way, again we seem on very similar timelines! How are you feeling about it? Will update on the sound bath, that’s happening tonight!
@schwartzwald happy belated birthday! Sounds like you had a lovely day!
@pips12 glad you feel some reassurance after speaking with your BCN & hopefully you’ll hear back from oncology soon. But yeah, it’s weird how different health boards work. I seen my oncologist the same week I finished chemo and she gave me an estimate for radio start date at that time, I didn’t see her for 8 weeks after that but I knew that as I was having surgery in between. Let us know once you’ve heard back, which hopefully is soon!
Hi @louise15 well not great tbh. I’m currently in hospital on IV antibiotics since wed. Expected to be here now until Sunday. I ended up with an infected seroma which they’ve aspirated 3 times. Has delayed my RT and Phesgo until sorted. I’m fuming with myself even though I’m not sure what I’ve done to cause it.
How are you getting on? How was your first radiotherapy? Oh and the sound bath. Still tempted by that once I’m up and about again.
Oh no, I’m sorry you’re in hospital! As for the seroma, my understanding of those is that it won’t have been something you’ve done they just naturally occur sometimes after surgery. So you can’t blame yourself, so please try to give yourself a break RT and Phesgo will still be there to get completed once you’re all better!
radiotherapy is going ok at the moment, I’ve now done 4 of them and so far I’m feeling ok but I was told it will likely be in week two I’ll feel tired and potentially have some skin tenderness.
the sound bath was interesting! Would do it again - I think I need to focus more on relaxing my mind some & something like that sort of forces you too. I don’t know if it would be for everyone but I found it interesting and would do it again xx
Hi all, just catching up after a lovely week away where I completely switched off from everything hospital related . Just what the doctor ordered!
@emma-jayne so sorry to hear you’re in hospital, I really don’t think it’s anything you did. If it’s any consolation I had seroma issues after my second surgery (node clearance) where it was leaking through the stitches, it took a good month to dry up and delayed my chemo start by 2 weeks, but I got there and you will too - I know it’s annoying when you just want to get on with treatment, but they have to make sure you’re ready to physically cope with the next stage, so please try not to worry xx
@louise15 I’m now 3 weeks post RT, my skin has been absolutely fine, and no tiredness yet but I think that can peak at 6 weeks? So apart from the throat/oesophagus issues (cleared up within a couple of days) and a sore shoulder for a couple of days, I have been fine - fingers crossed you are too
@pips12 hope you get the radiotherapy sorted soon. I was quite fortunate, saw the radiotherapy team mid November before I had finished chemo, planning scan mid December and they had me down to start straight after Christmas/New Year break. But like someone else said, it was clear from the start that I would have RT (it comes “as standard” for breast cancer according to my breast consultant - lucky us ) so it all went quite smoothly in that respect.
Well I am now on Day 11 of the dreaded abemaciclib and so far it’s not been as bad as expected. I have had 3 bouts of diarrhoea, one Day 3, one Day 7 and one this morning, but they’ve been sorted pretty quick by the magic loperamide, then I just get a bit of a sore tummy the next day a bit like you get after a tummy bug. I’m a bit wary of what I am eating and drinking, but so far it feels manageable though I am really hoping they drop my dose a bit. I managed to get out for walks last week when we were away with no disaster so am feeling a bit more confident about managing when I’m back at work. I have to get bloods done tomorrow and then have a phone appt with my oncologist on Tuesday - I guess the bloods will tell her more than I can, but I have kept a diary a bit like we did with chemo so I can give her accurate feedback. But if anyone else here is due to start abemaciclib please don’t look at the horror stories like I did - people are too quick to say the bad things and it might not be that bad!
Hi @pips12, my understanding is radiotherapy is compulsory for most breast cancers, if not all. So no choice really. I would push the Oncologist for a start date. It’s really frustrating how different trusts work so differently xx
Hi, things have suddenly moved very fast since my last post. I had a call from the radiotherapy unit asking me to go for a planning scan yesterday (Wednesday 18th), which is did and I will start my treatment next Tuesday 24th. Ten sessions over 10 days not including weekends. So pleased that I pushed to get it done. It will be another phase ticked off. Sending best wishes to you all xx
@pips12 glad you’ve got your radiotherapy sorted now.
@bramble1 how did you get on with your bloods this week? Hope all is okay.
@louise15 hope the rest of your radiotherapy is going well. The week after I finished my 15 sessions was definitely the worst for tiredness and the following week was worse for my skin, although it was only a little bit itchy in the evening. Otherwise not too bad.
I had my total hysterectomy with ovaries and tubes removed on Wednesday so am recovering at home. Only had to stay in overnight. The pain from the gas they use has been the worse thing, but that seems to have gone now, hopefully!
I’m starting on Ribociclib at the end of March, has anyone else started it yet?
I’m nearly 6 weeks into the Exemestane and that seems to be settling a little, my joints and bones aren’t hurting quite as much as they were, but I haven’t really been doing anything either so we’ll see.
Hair is coming back quite well, pretty grey, but mostly have a full covering. I’m hoping the Ribo doesn’t impact it growing back too much. Eyelashes and eyebrows are also making a return so starting to feel a little more like myself now - the no eyelash/eyebrow look is very strange!
Hope everyone is getting on okay with treatment and recovery
. I’m almost as scared as I was before starting chemo - my oncologist has said that it’s much easier than chemo, but the list of and type of side effects seem just as bad, which scares me because I feel like I’m so much better than I was 2 months ago and I really don’t want to go back to feeling like that 
. Even though I know it wasn’t too bad overall, I know it did get me down. I have anti diarrhoea tablets and anti sickness to take as needed, and blood tests fortnightly to start with. I’m going away for a week on Saturday and really want to get back to work on the 23rd, but am worried it will knock me back again and I won’t enjoy my holiday or will be too exhausted for work 
. And I know my health is what matters and I mustn’t run before I can walk but I really just want some normality back and am so fed up and teary 
. Which I know is normal - I will stay positive and take each day as it comes, and I know my family and work will be supportive, but it’s just another niggling worry I really don’t want and I’m so fed up of feeling like a burden on everyone 
) and when I look back to how far I’ve come since the last 6 Nations I’m very proud and can’t wait to see where I’ll be by the 2027 tournament 
. I’m also looking forward to the winter olympics and am glad I’m still off work to enjoy them 
it’s such a great charity, so I’m feeling lucky. Does anyone else have anything like that near them?
Went out for dinner at a local steak place and enjoyed a gratis limoncello. Home by 10pm, asleep by 11pm.
RT and Phesgo will still be there to get completed once you’re all better!
. Just what the doctor ordered!
) so it all went quite smoothly in that respect.
and so far it’s not been as bad as expected. I have had 3 bouts of diarrhoea, one Day 3, one Day 7 and one this morning, but they’ve been sorted pretty quick by the magic loperamide, then I just get a bit of a sore tummy the next day a bit like you get after a tummy bug. I’m a bit wary of what I am eating and drinking, but so far it feels manageable though I am really hoping they drop my dose a bit. I managed to get out for walks last week when we were away with no disaster so am feeling a bit more confident about managing when I’m back at work. I have to get bloods done tomorrow and then have a phone appt with my oncologist on Tuesday - I guess the bloods will tell her more than I can, but I have kept a diary a bit like we did with chemo so I can give her accurate feedback. But if anyone else here is due to start abemaciclib please don’t look at the horror stories like I did - people are too quick to say the bad things and it might not be that bad!