Heyyyy! how is everyone doing??? I haven’t been on here in ages yet again……
I’ve finished chemo now, my last one was 3 weeks yesterday…… so felt strange to not go yesterday, you know what I mean??! and I’ve had an mri on my breast now, as they want to check it before surgery…… which is booked for the 15th May!! did I see someone else mention theirs is that day too???
I’ve been for my pre-op appointment, which went well I’ve never had surgery before but actually I feel pretty calm about it, I just basically want it over with now…… I think after overcoming chemo and that fear etc, I’m pretty un phased now, but would love some advice or just help with what to take in with me (as they haven’t told me anything) and what has helped people post op, like anything I should buy or do that may help my recovery??
Also, I’ve decided to just go flat, I’m pretty flat chested anyways…… and my tumor was quite big hence why chemo first so that’s the best decision for me and I’m happy with it……. has anyone in this group had the same op, if so how did it go…… were you in hospital for long etc, I know all depends on the person and other health issues etc but just thought I’d ask 🫶🏼
Hey im 6 weeks out from chemo been in for the phesgo jags for her2 + twice without chemotherapy which is weird but nice at the same time as its getting used to not feeling crappy! Although i think the jags still leave a slight off taste in my mouth and my tummy has been a little dodgy today not sure if its related or not.
I have surgery on the 15th may im doing a double mastectomy and diep reconstruction im trying not to think about it to much or i get myself worked up. Im staying in for 5 nights but its a major op, ao im not sure how long for a mastectomy. Do you need radiotherapy? Im having radiotherapy after as i had over 5cm of dcis.
Hi everyone, I’ve not visited for a while, so thought I’d pop in. I finished radiotherapy before Easter, it was a bit of a nightmare for me, an old back injury - four fractured vertebrae - made it difficult to hold position which was exacerbated by the breath hold. I managed 3 before they gave up and decided to replan without the breath hold. Had my first ovarian supression injection last week, port out on Monday, starting Letrozole next week. I’m also in the CDK inhibitor club, starting in June, but I’ve been given a choice between abemaciclib and ribociclib. Oncologist said that ribociclib has fewer gastro symptoms, but higher risk of immunosupression. You take it for 3 yrs rather than 2, but in cycles with 1 week off. He also said there’s more evidence to support its effectiveness at lower doses, and referred me to a trial called NATALEE. I’m inclined to try abemaciclib first and see how I get on because I like the idea of getting it over with sooner. Deperate to get my eyelashes and eyebrows back! Did the Moving Forwards course over the past two weeks, recommended. x
Love this photo - you look very pleased with yourself!
Interesting information.
I started radiotherapy this week - finish on 21 May - and am finding it quite hard emotionally. I think I’m fed up with it all now.
I have been on Letrozole for two months now and start Abemaciclib about the same time as you. I’ve been messing around with the timings of the Letrozole - have so far done half an hour before bed, bedtime itself, breakfast and I’m now trying 5.30pm - so far this is the best. I don’t feel wrecked during the day and manage to (sort of) sleep at night. Best of luck. x
@stevie86 I am 2.5 weeks post surgery. Double mastectomy with expanders. So pretty much the same surgery. I have been pleasantly surprised. I’ve never had an op either and was very scared. But the recovery has been so much less awful and less painful than I imagined and I have a very low pain threshold! I’d describe it more as discomfort (although sometimes more severe than other times!). I did have some sharp pains in one spot in the first week or so but had lots of reassurance that it was normal nerve pain and would settle and it has. I was only in hospital one night and to be honest I didn’t use a single thing that I bought with me! I ended up just staying in the hospital gown and not bothering to change and I couldn’t face the shower with my drains and dressings so didn’t bother with any of that. So u didn’t use any of my toiletries or my nightclothes. I’d recommend button down tops/shirts for the first couple of weeks. And make sure you bring your post surgery bra into hospital.
I won’t lie - the drains are such a pain, and getting them out was a lovely day! But overall I have been pretty mobile to the point where I’m getting frustrated not doing things I want to do because of the ban on lifting heavy things etc. I am desperate to get back in my garden and planting and weeding. But I guess that’s a good sign. Perhaps without expanders recovery may even be better for you!
@rfg- I would have loved to have had the other removed as well tbh , more from the symmetry point of view . I have to say in the recent heat it was liberating to at least take one of my boobs off glad to hear recovery is going well x
@flower5 - congrats on ringing the bell !! You look fabulous x
I’m so sad our unit doesn’t have a bell , there’s zero fanfare or even goodbyes when people finish treatment on our day therapy unit … it’s a bit pants
@flojo - it just feels relentless doesn’t it …
I may not surprised you are not feeling it … how many sessions are you having ?
@stevie86 and @shannon27 - you are both going in for surgery on the same day !
I was terrified before my op but I needn’t have worried… I think the anticipation was way worse than the surgery x
I had my herceptin infusion just over a week ago and just before hand saw my oncologist who said they aren’t happy with my cortisol levels as they are too low , seems the steroids are interfering with my bodies own ability to make cortisol
Another long day on the unit … then spent all evening fighting yet another allergic reaction …
Plus the steroid affects and then I had to work all weekend because my bills won’t pay themselves!
Hubby started a new 9-5 job so I was flying solo this week driving my daughter to and from school 12 miles away and trying to do stuff round the house … subsequently this weekend I feel really il ((self pitying whine )) oh to feel normal again !
My hospital are being rubbish again , I had to chase up my heart echo as it had been overlooked and I’m supposed to see the oncologist before each infusion but I haven’t been sent an appointment which means I’ll have to drive to the hospital to chase it up
As they never answer the phone . Isn’t it exhausting when you constantly have to chase up
Oh @arty1 this is all so very rubbish for you. Sounds like the chemo experience has never really ended for you because of your reactions. Just rubbish! I’m so sorry. I have felt so grateful to be not working throughout all of this, and I only have to drop my daughter at the bus stop down the road 3 days a week - and I am exhausted all the time! So I can only imagine how you are feeling. It’s all so relentless. Plus you find the headspace to be so supportive on here to us all! Thank you by the way!
Sorry you are not feeling so well @arty1. That’s not much fun. I think it takes so much out of us all.
I have 15 sessions - 3 down, 12 to go and it’s feeling a bit relentless. Also going to the hospital every day is quite triggering. I’m finding it harder than I thought.
I have to go for a check up on Tuesday too as I noticed a bit of staining in my bra, which I think is coming from my good nipple. The nurse said she would be surprised if it was anything sinister but it needs checking out. Needless to say, I’m feeling in a panic about the whole thing. The thought of more surgery or treatment - never mind that the chemo and Letrozole haven’t worked - is depressing. Hopefully it will just be one of those things, though. It’s only a month since I had a full check with the surgeon. XX
Thats rubbish you are having to chase them up, you always hope your team are on top of things. At the end of my treatment i should of got a heart scan but they never scheduled it before my 7th phesgo, so had to wait 3 hours to get my jag as they had to okay it with the oncologist. Then get a heart scan before the next one!
How are you feeling now?
Yes 15th may for surgery, im trying not to think about surgery to much as i will freak myself out. Ive spoke with someone who has had the same surgery at the same hospital which is reassuring. i have invested in a electric recliner from my local home basic store (2nd hand furniture) as my 5 year old wont sleep in her own bed and my surgery is diep so im going to need space to heal xx
Hi everyone what a day but it confirms to me we are lucky to have the NHS taking care of us. I was back to see the breast clinic today because of a slight staining on my bra where my nipple would sit. This was a week after calling the team about it. They checked me out and thought it might be the Letrozole, but sent me for an ultrasound.
I’m due my first mammogram in June, but while I was there, they decided to do that too. The ultrasound was all clear and I got my mammogram results there and then - all clear. So not panicking about waiting for the postie. It threw me a bit but I’m grateful for the care I have received. I’m feeling a bit battered about as I then had radiotherapy this afternoon but I’m feeling more chilled now. xx
@flojo - that’s great news about the mammogram - I can only imagine how relieved you just feel xx I’m supposed to have my annual mammogram in July but quite frankly my hospital are so rubbish I’ll probably have to chase it up .
I understand what you are saying about hospital being triggering … I literally feel sick these days pulling up outside my hospital … Soon the radiotherapy will be over at least … it must be draining going every day
@rfg and @shannon27 I’m losing faith in my hospital tbh - I chased up my echo to discover my consultant had forgotten to order it correctly , so now I’m having it done this Sunday , then my pre treatment oncology appointment failed to emerge so I had to chase that , appointment sent today ., for the same time I’ve booked to have my bloods . Give me strength … So now I’ve got to try and get through to the blood test department who never answer the phone … in order to change the time and if I can’t , I’ll have to drive to the hospital an hour away and physically go in … not for the first time … I’m exhausted and stressed … I’m barely getting to sit for five mins in the day and having to constantly chase appointments is just too much . I feel a complaint to the hospital coming on !
I had to complain after my surgery as they forgot to call me in for my results ! @shannon27 that’s pretty poor that you hadn’t had your echo before your injection … I haven’t had an echo for months … I was promised every three months but that went out of the window
I was frightened before my surgery too but I worried myself without just cause really , I actually felt relieved to have the op … but my surgery was before chemo so I just wanted the cancer gone … no reconstruction for me so you will neee to really take it easy and rest , the recliner chair sounds ideal x
Sorry you are having a hard time with chasing the hospital. My surgeon arranged the mammogram - so I already had an appointment through for mid June, so they have now cancelled that. Hopefully they have a system in place to make sure it happens though!
I’m tearing my (lack of) hair out at the hospital over my dad! He was prescribed some cream for early skin cancer changes. He is 93… I cannot get it anywhere. The pharmacies all say there is a supply problem. The hospital has some in stock but the prescription doesn’t cover the hospital pharmacy. The dermatologist won’t send an electronic prescription to the hospital pharmacy for it - she says we need to find it externally (no idea why). So far, I’ve tried eight pharmacies and Boots where you can look up supply locally…I’m hoping they take pity on me and will write a prescription for the hospital. If not, I guess my dad won’t have his treatment. Grrrr!
I know. The dermatologist also says there is no problem with supply and to just keep trying - err, so the pharmacies are all wrong then! Even the hospital pharmacy said there was a manufacturing problem. I’ve had a look at a couple of online ones but no joy so far. It’s much harder than it need be - and presumably lots of people are in the same boat. x
Aw that sounds like a nightmare, its not good being stressed on top of all this going on. I think a complaint is necessary, its not fair that your having to do all the chasing.
Yes i have a feeling i may have to keep an eye on scans too just to make sure they are remembering i will ask my oncologist when i see her when will i be getting them so i can keep track.
Yes its coming in fast now the surgery, ive been trying to get organised and i thought i had hayfever these last few days but turns out ive managed to catch a cold, i hope it will be okay for wed for things to go ahead like you say its good to get things done xx
Hi @flojo - so sorry I just checked this!
Radiotherapy all done and it was easy compared to chemo! I’m tired but then I was tired anyway. I’ve been on tamoxifen since start of Radiotherapy. I had 15 sessions. Tamoxifen is doable - at min!
I still need to have the oncologist chat about about the abemciclib and I’m really feeling low about it all too. How are you? Xo
Hi, sorry for delay! I’m so worried about the abemciclib, it sounds awful from what I’ve read. I want to ask about starting on a low dose, did you get asking the question? How are you doing? I finished radiotherapy yesterday but with the worry about abemciclib, I’m not seeing any light at end of the tunnel xo
Well done for getting through your radiotherapy. I’m seven down and eight to go…I was thinking that was bad but met a lovely lady on Friday who was just finishing six weeks of radiotherapy, so I told myself to get a grip! I’m about two-and-half months into Letrozole - ok mostly. But dreading Abemeciblib like you. The surgeon said most people tolerate it ok but I’m not sure if he was just trying to make me feel better! I have an oncology appt at the end of May to discuss it. When do you start it? It’s a hard old slog but I had my first annual mammogram this week - mostly because I needed a check-up and they decided to do it while I was there. I guess it was good in that I didn’t have time to worry and it was ok. xx
I’ve never had surgery before but actually I feel pretty calm about it, I just basically want it over with now…… I think after overcoming chemo and that fear etc, I’m pretty un phased now, but would love some advice or just help with what to take in with me (as they haven’t told me anything) and what has helped people post op, like anything I should buy or do that may help my recovery??
glad to hear recovery is going well x
i have invested in a electric recliner from my local home basic store (2nd hand furniture) as my 5 year old wont sleep in her own bed and my surgery is diep so im going to need space to heal xx
like you say its good to get things done xx