For anyone that’s having a mastectomy soon and likes following a rehab plan, I followed this one and it helped me get my full mobility back pretty well: 12 Week Post-Mastectomy Breast Cancer Series - The Limit
For me it helped having a day-by-day video series that lasted a little bit longer because the exercises I got from the hospital physio only took me so far.
@jayveebee funny I asked my oncologist that exact question today. Now she told me in our area it’s one year after surgery. So for me I was diagnosed August 2024, chemo finished January 2025, SMX Feb 2025 so that means my mammogram will be Feb 2026!
Like you it worries me but my oncologist tried to reassure me today
@hasnae87 have a look at pre loved reloved. If you went to CIC Jo was there. She will have a drain bag she will send to you
https://prelovedreloved.org.uk/
Everyone else looks like you had such an amazing time in London. I was sunning myself in Corfu otherwise would have been there to have fun and put faces to names. Hopefully next time xx
There is actually another CiC event in London on 19th July - they said on Saturday that this is their first time trying an event in a cinema, apparently we will watch Mrs Harris Goes to Paris then they have a room booked for us to chat after.
So will be rather different than all the dancing on 5th! But I imagine there will still be lots of hugs available so if anyone fancies it then might see you there 
Feel free to DM me if you do and want to meet up - we (or rather, @kartoffel who was the organised one 
) set up a little WhatsApp group so we could know who to look out for so if you like the idea please include your phone no. and I’ll make a group.
…and this is where you register with CiC if you want Cancer in Common - Cinema Style | Cancer in Common
@knock-knock would have loved to have joined you for that but I am at a wedding that day! I am such a social butterfly this year! X
I went to see my oncologist today with a great big list of side effects of I am assuming Herceptin as follows
Dry eyes (so much so in the mornings I force one of them open)
Dry and crusty nose (sorry if that’s TMI)
Dry mouth
Ongoing stomach issues
Unbearable night sweats
Any other menopausal lady problems
And a question about when I should expect my one year mammogram
I am so lucky with my oncologist who is the most real Dr I have ever met! Anyway she said she couldn’t really help with much at all only the crusty nose which she gave me a prescription for.
We discussed the hot flushes and I asked about the new drug that’s been approved elinzanetant. It’s not available on the NHS yet but you can get a private prescription.
So all in all a nice appointment but sadly no real cures for my side effects. She did say some are more likely menopause though than Herceptin - yay!!!
Any tips from you guys as always greatly appreciated 
@kartoffel Thank you I will have a look at this as I’m having a mastectomy tomorrow. Really nervous and dreading the results but it needs doing.
@naughty_boob @gromit12 @jayveebee @isthisreal hope all your mammograms are clear
@hasnae87 best of luck for your mastectomy next week. Xx
Thank you, best of luck on yours too tomorrow lot of hugs
The exercises aren’t too strenuous. I can’t remember if you’re having any lymph nodes out too (sorry, my brain is mush).
Don’t push or rush yourself with them, just try to do them daily. Even a little goes a long way, hopefully you’ll be able to chase around with your son soon.
I packed way too much for the hospital (but would do it again), I didn’t end up wearing my pyjamas or robe.
If you can’t find a drain bag you could try a handbag with a decent sized middle or a simple tote (the biggest drain is sort of the size of a lucazade bottle, and they may give you a nice soft one instead).
The singer Jessie J had a mastectomy a couple of weeks ago and she posted a video of the drain so you can gauge the size of it if you’re curious.
I’ll put a link below (slide 14)
https://www.instagram.com/p/DLQc1Q9MAEF/?img_index=13&igsh=MjE2MmV4MnFwM3px
I’d focus on the silver lining of the wait for the mammogram. If you find anything or are worried I’m sure they’ll be over cautious but in the meantime you get a year from surgery to get used to your new chest and it’ll be really healed.
I would have waited to ask for mine but I also thought I felt something on the other side (which has since gone away) and was happy to have another mammogram less than 6 months from surgery just to make sure, even though I was worried my boob would pop the stitches (my imagination, honestly).
It wasn’t even that painful in the end, these procedures and chemo are making our pain thresholds better I think. Not much phases me now. And watching videos of the operations also helps me mentally.
Now if I could just clear this brain fog and fatigue…
For the dry mouth I recommend the artificial saliva, Bioxtra. I’ve really been suffering with dry mouth so my oncologist prescribed it. I don’t think you buy it over the counter. My oncologist was happy to prescribe (didn’t have to beg or anything).
@anb1 Good luck with your surgery tomorrow. Hopefully a speedy recovery.
Hi @galdiolus (who I’ve just realised is not a flower, gladiolus!) I’ve been told to take Omega 3 by oncologist. Gives me indigestion (Kadcyla!) as tablets even with meals but I’ve seen liquid forms that are supposed to be easier. This worked on my dry skin and eyes and general for all inflammation. Magnesium also cleared for use. Good for sleep and muscles. Look up which form for which. Friends swear by sage tablets for sweats. I only get them when i drink alcohol or caffeine or overdose on sugar. I was on hrt before this but weaned off before chemo. Since then I’ve followed the Mediterranean diet and all meno been bearable. Except dryness down below. Oncologist also approved vaginal oestrogen ring and all comfy again. For any supplements only get clean brands eg. Dr Vegan or British supplements online. Viridian in health food stores. No fillers. High quality potency. Get shopping. You’re worth it.
Oh and had dry mouth since started Kadcyla. My chiro gave me tongue exercises (yep really) for my neck and back problems. Sorted dry mouth! Bonkers. V discreet no poking tongues!
I have a few of these side effects on phesgo, although my oncologist suggested they were just lasting effects from chemo….
What did they prescribe for the dry crusty nose?! It’s the worst! Mine just suggested to use a saline spray to clean it out which I’ve been doing but hasn’t resolved the issue.
I also have a dry mouth and a gross vinegar taste on the phesgo, I thought it was the docetaxel back when I was having them both but seems it was the phesgo 
Be thinking of you tomorrow.
@galdiolus great news about Elinzanetant, I tried Fezolinetant for 6 months and it was great but with consultant fees, pharmacy fees and postage as well as the actual drugs it was £2000 per year which was too much. It took nearly all hot flushes away in a matter of days but I had it off licence as it hadn’t been tested on breast cancer patients. Luckily Elinzanetant has. Let’s hope NICE hurry up and agree it can be prescribed on the NHS. I’m on Oxybutynin for hot flushes, it seems to work in the day but I have them every two /three hours from 9pm to 7 am which is debilitating not being able to get any much deep sleep.
Just completed the CBT course for managing hot flushes, main points are
-diaphragmatic breathing,
-reframing your thoughts and behaviour, don’t stress about them, let them just happen,
-sleep hygiene including restrictive sleep window, same bedtime and getting up time; if you wake for more then 15 minutes, get up and do something; try banana and horlicks/hot milk; sometimes just accept good enough sleep, especially if you get enough deep sleep in the first few hours of being in bed.
@sez @jayveebee @sooz1
Thanks all for your replies, yes I need to relax about the mammogram and just keep checking each month and trust myself!
Interesting about the sage and magnesium. I started omega 3 about 1 month ago so I shall keep up with that. Can you believe the NHS recommend CBT for sweats - like it’s in our minds!!!
My oncologist didn’t recommend anything for the dry mouth so I might email her about your recommendation. She did however mention the topical oestrogen so she said she will write to my gp about that.
For my nose she has prescribed Naseptin (I think that’s what my prescription says #drswriting!
That’s interesting about a Mediterranean diet, I wonder if that’s the olive oil?
As for Galdiolus trust me that was a typo when I set this account up 
it was meant to be Gladiolus like the flower as it represents strength. I don’t think I can change it now so just go with it 
Thanks everyone ad always for your great tips and advice
@naughty_boob now I have to eat my words about the CBT for the hot flushes 
Same as you it’s the broken nights are exhausting. I can deal with them in the days and they pass quite quickly it’s the internal boiling at night 
Let’s hope NICE get elinzanetant approved soon 
got to start supporting these side effects of chemical induced menopause xx
https://menopauseandcancer.org/ is an interesting site, they will have tips
And I’ve had the most random selection of low level infections so nose could be one too and absolutely need antibiotic cream.