Hi @donna_51 - I am on letrozole for ten years (!) I’m waiting for the side effects to kick in.
My joints are tired already from chemo and no HRT. I’m adjusting to the new normal.
Well done on ticking off the treatment list. People think we’re done just because chemo is done, but we’re not. Hard explaining this to family and colleagues.
My worse one is Abemaciclib in January for two years. I’ll see how bad it is and how it reduces my risk. Keeping fit/exercising and eating well might have more of an impact on reducing risk. Who knows. It’s also about quality of life. Abemaciclib requires a lot of supervision including biweekly blood tests. It’s incredibly expensive too.
Is anyone on Zometa yet. I hear the first one is hard post injection. Someone told me to take an antihistamine first
@donna_51 I have started on tamoxifen already(that for 2 years then 5 to 7 years of letrozole). I was nervous about it but to be honest i havent felt any worse than end of chemo…ive had massively achey joints (as i know ive moaned about several times!) but chemo would have caused that too. Im taking vegan algae, think it might help a bit but early.
I too was in menopause and on HRT previously…
@jbb sorry im not having all you are so no knowledge. I know my friend with secondary cancer is on letrozole, she gad to take it with ribociclib…the idea is the combination extends the effectiveness. But she stopped ribo as too many aches/side effects, and has exceeded how long letrozole should be effectivene for her. So it really is personal choice…i hope things arent too tough on you…
Hope everyone else still ticking along ok. Im now 4 RT down out of 20…doing ok, but im still emotional. I do think this year is catching up on me mentally…going to look into some counselling…
@donna_51 I’ve started Tamoxifen. I have 5 years to do. They will assess me in 2 years to see if I need to switch to something else. I was perimenopausal before this. I already had muscle aches after chemo finished, including a really achy right knee at night! What’s that about?! Haven’t noticed any extra issues yet but only started this week.
I have developed an achy right shoulder (my surgery side) which could be due to the radiotherapy (I’m on week 2 now) so need to start some of my surgery exercises again. I have a review tomorrow so will ask about my shoulder then.
On the plus side my fitness has definitely improved since being back at work. So once I finish radio I reckon I’ll be ok to browse the shops and Xmas market at lunchtimes
Hi all … can’t offer any feedback on the after drug treatments, in fact these have never even been discussed or mentioned to me, so not even sure I’ll have them?! Asuming I will
Just wanted to join the conversation about family and colleagues thinking it’s all done now chemo is over … this week I have really felt that as well and it’s both frustrating and upsetting me in equal measure in particular my partner and older children … I feel like now I’ve gone back to work the expectation of me being the house servant is back in full force … I’m seem to be doing everything without any offers of help, no one asks if I’m ok … despite me visibly looking very tired and out rightly saying it (although I’ve stopped now as no one was taking any bloody notice ) I feel so upset about it all but then also feel I can’t keep telling them or trying to explain anymore… and this probably isn’t true but I just get the sense people are “bored” of it all now and don’t seem to understand the impact it has had and they think I should be getting over it now!!
I know I’ve had the added upset of my dad but I’m also really emotional… back to crying everyday at least a couple of times… all done in private! I feel anxious as well about going out now … I had a meeting today and normally I’m not phased but I felt so nervous going into one of my schools with my bald head (my hair has really fallen out again which I think has knocked me back again) ! It was fine in the end and I know it’s all in my head but I hate feeling like this … it’s starting to really get me down!
Sorry for the rant… just having such a shit day!! x
@charlie22 rant away, that’s what we’re here for. Sorry you’re having such a bad day.
I do think it’s hard for people to understand just how hard it is even after chemo is finished if you’ve not been through it. People just assume you’re getting back to normal. I have older kids too, two boys 17 and 19. Do you tell them exactly what you need help with? That’s what I do. Tonight I didn’t have the energy to walk the dog when I got home as I was going to cook dinner and sort some washing so I asked one of them to do it tonight and the other could do it tomorrow. I sometimes get a few grumbles but they do it. My husband does help out too, but I don’t think they fully understand how I’m feeling sometimes.
You’ve been through a lot and I imagine going back into work and attending meetings must be a bit daunting, especially with the added issue of the hair. Sounds like you handled it fine though. Hopefully your confidence will build over time. In the meantime come on here and have a good rant
@charlie22 big hugs! Youre not alone and youve had so much more to get through.
Keep the tears coming. Its healthy, but dont feel you need to hide them. Maybe you dont need to boo at Tesco checkout but it might do your family good to see how you are emotionally…
I feel very lucky my partner is supportive and telling me i need to slow and be patient…rather than cram my days catching up. Amd im def more emotional when i get tired.
We’re here with you/for you. But might be worth some talking therapy too?
Thank you @wjs and @nicd … appreciate your support and encouragement!!
I’ve never really given the kids jobs to do … apart from taking in turns to wash up, which they still argue and moan about and every now and again my daughter will walk the dog, but as the nights getting darker I don’t like her doing it. I suppose I could try with giving them set jobs around the house, it’s about time they did more tbh regardless of what’s going on! I’ve always just got on and done it … it’s easier, quicker and gets done properly but as my sister always points out that’s my downfall!!
I had another cry at my pre-op assessment… came out of nowhere! So I think I really do need to look into talking to someone… other than my mum, as I feel like I can’t keep ranting at her at the minute!
I’m just hoping it’s a bad couple of days and I’ll see the light by the end of the week … I’m also meeting my friends for the first time in aggggess next Friday night, so that’s always good therapy!!
Oooh @charlie22 I absolutely hear you!! My whole family seems to have forgotten what I’ve been through now all active treatment is done. My teens are soooo self absorbed and said that my life couldn’t be as bad as theirs as I get to be home all day! Honestly… I do show them fairly regularly how upset I am about things when it’s relevant - it’s good for them to see that life is absolutely shite sometimes But I have come to realise that peeps do want you to move on. If I’m being kind it’s because they want you to be happy, blah blah but if I’m being unkind/negative, it’s because people really want their lives to be good & me ‘going on’ about cancer, my journey, my recovery etc… makes them feel bad/sad/ruins their vibe!!! Sooo I think you just need to look at your support network and work out where you can offload, get emotional support. If you can fill your positive bucket outside of the family (counselling, local support group, us!) then life at home feels less draining… maybe??? As for practical tasks - I’m on a mission not to clear up after everybody and the house is a horror/student house. But it means they notice and they just might DO SOMETHING!!!
Let’s keep ourselves number 1 for a bit longer … cry, take time, ignore others who think we should be bloody survivors dancing round and bungy jumping… EAT CAKE !!!
@wjs I too have a slightly sore shoulder after 1 week of radiotherapy so I presume it does affect it. I’ve been trying to loosen it up but every morning it’s stiff again… arghhhh … time, everything takes time!!!
@donna_51 yes they said today the shoulder thing will be down to the radiotherapy so back on with some surgery exercises! Was back at ballet tonight so it got a good stretch there too Week 2 nearly done! It’s actually going quite quickly. Using the MooGoo cream and no sore bits so far
@donna_51 thats exactly how I feel my partner is, he doesn’t like me talking about it and I can tell he’s not really paying attention to me, and somehow it always turns into how he feels uncomfortable … then I feel like screaming try living with it!! We had an argument last night and in it he actually said I was “attention seeking” when I tried bringing up agin he’d not been very supportive over last few weeks, as not helped round the house etc!! Which was lovely!!
The kids one is always tricky … I don’t want them to feel burdened but at the same time they are getting older so should be more aware!! Teens … no one really warns you about that, it’s always the terrible twos … well that’s a walk in the park compared to trying to communicate with teenagers
Anyway I have finally plucked the courage and signed up to the McMillan support … I have an assessment call this morning at 8.15am … so first step done!!
Thank you (and everyone else) for making me feel I’m not the only one going through this!!
On a different note … can I ask about everyone’s hair? Mine was starting to grow and would say had about a CM of white fluffy growth all over! But now it’s really falling out again… in fact it feels worse than it did originally! I’m four weeks post my last chemo!!
But weirdly I have noticed my eyebrows and eyelashes are growing!!
@alig1961 did you get told anything on the hair course? Sorry I can only remember you doing it, so thought you might know if this is normal?
Hi @charlie22. Sorry I don’t recall anything about hair growth and then falling out again. I’m sat waiting for my last radiotherapy session and don’t have my notes with me. I’ll have a look when I get home. If you’re worried you can contact the cancer hair care charity, they seem lovely. https://www.cancerhaircare.co.uk/
My hair is fine fluff and doesn’t seem to be doing much growing. I’m trying not to worry about it. Easier said than done. Xx
@charlie22 my hair is falling out like anything - 6 weeks post chemo and it’s very itchy too. I can’t decide whether to shave the last bits or not. It feels a bit ridiculous to do it now as I didn’t shave all through chemo I’m a bit worried that if I shave then my wig is more likely to slip. Do those of you who are wig wearers and bald find it stays on ok?
@alig1961 WHOOOOO all done… yay… bloody celebrate this weekend!!! Onwards and upwards xx
No hair growth here either… 6 weeks post chemo. Some fluff but it’s worse than being bald. I’m giving myself til Xmas then I’ll panic about being bald forever!!! I am sick of looking like an egg or a very pale baked bean!!
@charlie22 how did the counselling call go? Keep going as talking to someone who is there to 100% listen to you is amazing!! xx
@alig1961 congratulations! You definitely need to celebrate in some way or
@pat Re the hair I’ve felt like I’ve had quite a lot still coming out. (6 weeks this week). However, I was reading something on the Cold Cap site about not rushing to do anything drastic with it. It can take a while to stop. My hair is coming in well round my ears and I can see fluffy bits on top of my head so I’m hoping that will help blend in the thin bits on my scalp soon! I washed it this morning and felt like there was slightly less hair that came out this time but that may be wishful thinking! Trying to be patient and see what the next few weeks bring.
I don’t appear to have any growth with my eyebrows yet - they’ve nearly all gone. Have a few top eyelashes but not the full set!
Thank you all for the congratulations. I’ve just had a lovely glass of jammy red wine. Now for pie and mash. Have a lovely evening everyone and thank you all for being there. Xx
Congratulations! I hope you enjoy your pie and mash and that your jammy red wine is delicious! - so well deserved X
@charlie22 I did one of the hair calls and I think I remember them saying that hair loss can continue post chemo. Good news that your eyelashes and brows are starting to regrow, hopefully your hair will follow suit. X
Asuming I will 
in particular my partner and older children … I feel like now I’ve gone back to work the expectation of me being the house servant is back in full force … I’m seem to be doing everything without any offers of help, no one asks if I’m ok … despite me visibly looking very tired and out rightly saying it (although I’ve stopped now as no one was taking any bloody notice 
) I feel so upset about it all but then also feel I can’t keep telling them or trying to explain anymore… and this probably isn’t true but I just get the sense people are “bored” of it all now and don’t seem to understand the impact it has had and they think I should be getting over it now!!
but as my sister always points out that’s my downfall!!
But I have come to realise that peeps do want you to move on. If I’m being kind it’s because they want you to be happy, blah blah but if I’m being unkind/negative, it’s because people really want their lives to be good & me ‘going on’ about cancer, my journey, my recovery etc… makes them feel bad/sad/ruins their vibe!!! Sooo I think you just need to look at your support network and work out where you can offload, get emotional support. If you can fill your positive bucket outside of the family (counselling, local support group, us!) then life at home feels less draining… maybe??? 
As for practical tasks - I’m on a mission not to clear up after everybody and the house is a horror/student house. But it means they notice and they just might DO SOMETHING!!!
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another one finished!!
or