Ah great thanks for that @ldm
I have onco appointment on the 31st so assume sometime after that as assume I need did you have baseline bloods before starting? Did you or @pipspops have them?
Have you had a dexa scan before the decision to have the zolendric acid infusion? Or are they just going ahead with the infusion anyway? Is it every six months?
Xx
@bex1 yes I was completely bald, I didnāt cold cap. In had EC and Paclitaxel - I lost my hair really quickly on EC and it started growing back a couple of week before my Paclitaxel chemo finished, although it wasnāt much at that point. I think it was just after Christmas when it suddenly started growing really quickly (my hair has always grown fast). I lost what was left of my eyebrows and eyelashes a couple of weeks after chemo finished, these suddenly started growing back beginning of Jan and are better now than they have ever been. I still have no hair on my arms or legs - itās all very random xx
@kerrylou1 yes I had to have a blood test which covered both of the treatments. Once it starts I have to have blood tests every 2 weeks till the Abemaciclib is settled and then every month as it can affect blood levels.
The infusion is every 6 months for 3 years xx
Yes I had bloods before meeting with oncologist to dispense tablets, then also every 2 weeks for a couple of months I think. She said itās to check levels and most importantly liver function. Basically thatās the one which will determine if we can stay on the tabs regardless of any other side effects (lower dose wonāt correct that one).
After 6 months Zoladex and Verzenios will be done/prescribed by GP surgery not hospital.
Hi ladies @kerrylou1 congrats lovely. Hope everyone has had a good weekend. Well I went out again. Was very busy in my local so I saw a few more people i havenāt seen in a while and had to do a bit more explaining about my bandana. Was ok though as I could reassure them that my treatment has finished now. Something strange happened though. 2 ladies who i donāt know at different points through the night came up to me to share their experiences. One had gone through surgery and was still having treatment and the other was starting radiotherapy on Monday. I tried to reassure her. Tbh it wasnāt easy talking as we were on the dance floor and was very noisy and she wouldnāt stop hugging me. That may be because of the alcohol as well. 
bless her.
she said she thought i was brave and amazing. Which made me smile as i wasnāt sure why. Maybe just because i was out having fun. But if this has taught me anything is to enjoy life whenever we can. Xxx
Hi ladies!! So sorry for staying away for so long. Gonna be honest, im struggling lol. Barely keeping my head above water at the moment. Not that my family and friends would know because Iāve been my usual bubbly enthusiastic self but inside has been a WHOLE different story. I havent wanted to upset anyone by saying how Iāve felt because theyre all so happy that ive finished radio and chemo and that my hair is growing back etc. Feels wrong to burst their bubble by saying how i actually feel!
Anyway, enough about all of that negative bla bla bla haha.
Congrats @angieb1 for ringing the bell 
you look so happy in that pic 
@idcand49 sorry for the really late reply! So I had the jab in the tummy hormone, zolodex i think its calledā¦ probably got that wrong lol. And start letrozol (again probably got that wrong lol) on the 22nd. I start the abimiclab doodah thing tomorrow, and the bone infusion thingy at the same time. Cant keep up with all the names of things, everything has a nickname in my house 
@ldm totally agree with you about taking everything to stop the blighter coming back!! Inject it into me eyes and up my backside if youve got to haha.
Lovely seeing everyones updates. Hope everyone is well
Aawww its lovely that you had a nice night out!! I had something similar as well! But mine was at Aldi a woman i had never met came up to me to tell me how brave i was and kept hugging me too haha. I wouldnt mind but i was very confused, i was only trying to get milk and bread haha. She was sweet though, everyone was looking. It was very strange haha. Seems like a lifetime ago now.
When people see you functioning, it gives them hope
Aww bless you. Sorry you are struggling so much. I know what you mean though about staying cheerful for others. I think its like fake it till you make it. Most of time i am ok but i remember many years ago hearing the news that someone l knew had lost their fight. I said to be myself right be prepared if you get it then thats it. I know now thats not rational but its those words i keep hearing at times. I wish there was someone you could open up to maybe even your bcn? My husband randomly asked me the other day how im feeling mentally. I was a bit surprised he that he thought to ask. He said i seem ok but wanted to check where my head was at. Hes suffered with his mental health so i supposed he gets it bit. I reassured him im ok most of the time. Im thinking of you and you dont have to be strong for everyone else. Im sure they would be strong for you. You have been and still dealing with so much. Look after yourself sweetheart 
Thank you honey! Thats a lovely msg.
Yeah im starting the HOPE course with macmillan in February and thats all about moving forwards after cancer. Thats the thing though, i think because its all still very active in my mind, everyone else is like āafter cancerā and i dont feel like its āafterā. I feel its very much ānowā.
Thats so lovely that your husband asked though, you know what most men are like so thats been brewing to ask you for sure. Nice to know youre on his mind. My husband checks in with me every now and again when he sees me looking vacant. Xxxx
I will probably do a course at some point ive an appointment with my bcn next week. Just as a catch-up. Also my oncologist next month the only meds i am taking is bone strengthening ones instead of the transfusions. I suppose they will tell be about any blood tests i need or when i will have mammograms. And yes people think thats it now all over. For us it will never be all over. I do think in time we will feel ok again but it will take that time to heal mentally as well as physically. Xxxx
@zaran firstly sending you a big hug.
I completely understand where you are coming from. Iām booked on a hope course starting in Feb and the Moving forward course but Iām starting to think itās all to early. I start the same two treatments as you tomorrow and started hormone therapy in Dec. To me it still seems like so much to deal with and if Iām honest Iāve been really tearful recently - I think all the stress of radio (mine had a number of restarts and extra scans) and now all the burns/skin reactions from that (Iāve got some bad ones) and starting the next thing - I feel I havenāt stopped. I cried at my oncology appointment and my final radiotherapy review the other week and I donāt even know why. Yet when people visit I put on my fake positive and they all comment about how well Iām doing. You are certainly not alone in how you are feeling xx
@zaran @ldm you wouldnāt be the only one to feel that way when your active treatment has finished. I found the end of my chemo/radiotherapy time quite lonely, not going regularly to clinic, having PICC line dealt with or having bloods done. I still had Herceptin for several months and the nurses came to my home every 3 weeks but it was lots of different nurses so didnāt get develop a rapport. In May I had my negative genetic tests so decided it was time to book the BCN Moving Forward course.
I see you have booked a MacMillan Hope course and there is also a āWhere Now?ā Course at Maggieās
I finished Herceptin mid September and still have some ongoing issues, possibly Letrozole side effects, aswell as radiotherapy and cording issues.
Sharing how you feel on the forum is great as you are anonymous. Family and friends sometimes think you should be able to get on with life, back to normal etc but it takes time. Be kind to yourself and I hope the MacMillan course helps.
There is also free counselling available via MacMillan and Maggieās. Some employers also offer it, if you are employed.
Take care. You are doing great.
Thankyou for sharing your thoughts - it has helped me put some of my thoughts into perspective.
This is exactly how I feel - I should be making plans to return to work and feel like if I say April 1st that is too far away and people will think - shes well why is she staying off. However we still have hormone therapy zoladex abemaciclib and bisphosphates to deal with (I havenāt started the last two yet). Plus my hair is still falling out but have regrowth at the same time and am almost 9 weeks post chemo.
@zaran i think it is great you are saying how you feel even on here - hope it has helped a tiny bit xxx
Sending you love @kerrylou1.
Iām signed off from work till end Feb. It was March last year that I was diagnosed so I think thatās going to be a tough month. I honestly canāt see me going back to work yet. I think with the amount of treatment we are still going through and effects of chemo/ treatment to date then we need to put ourselves first (I say that but constantly totally stress about it so understand your concerns). My confidence is also rubbish at the moment due to hair loss and the dread of people asking me if Iām ok and getting emotional in front of them.
I have found this forum group so unbelievably helpful and supportive xx
@zaran sending you big hugs mādear, this is the place to say it out loud, sorry youāre having a rough time. Iāve called my zoladex the āharpoon jab thingā, letrozole āthe one before bedā. Havenāt got a name for my abemaciclib yet (still no side effects thank goodness, but not counting chickens yet).
Your post touched me because as far as everyone outside of this forum is concerned, weāre finished treatment. Weāre not and itās beginning to hurt that family and friends think we are, you are so not alone feeling this. We keep on as though itās all okay but I realised last weekend, and it may be the medication talking, that I felt quite unloved. I canāt put it another way. I feel like if people think I finished treatment before Christmas, whereās the āwell donesā? Whereās the token messages of congratulations? Or has it gone on so long people are fed up with and have actually forgotten us?
Iām pretty low maintenance generally- is that the problem? Oh itās only āpipspopsā, she wonāt have a hissy fit if we make no effort. But when two so-called friends I used to lunch with occasionally have not contacted me since before chemo, and one of my two step daughters didnāt wish me happy birthday recently, Iām starting to get the needle. My partner is saying the love words but Iām starting to feel like the bloody housekeeper, no surprises, no tokens of anything, no effort.
As you say, now the hair is coming back itās like itās all over. Iāll be making some culls to my already very small circle of family and friends and sort of make peace with the new look me. I hope you get someone to talk to and get this off your chest. Any courses and any 1:1 counselling you can get, grab with both hands. Xx
Sorry youāre also feeling like this hun. It does seem like people dont care. Im sure they do ive got some really good friend some were texting relentlessly throughout all treatment and some not so much. One told me she wanted to give me a rest because she thought everyone would be messaging and another is always apologetic saying she ment to but is busy. And tbh she is very busy. I think life gets in the way and the they just donāt get how bad we are feeling. Hate the fact you feel unloved, im sure you are. It is good to come on here to open up. Take care love. Xx
Thanks love, youāre right x
We are loved and cared about same as before Iām sure, but our lack of confidence, uncertainty about the future etc, sharp focuses any perceived slight or actual lack of thought. Iām so looking forward to being able to just shrug thoughtlessness off again, but the current vulnerable part of me thinks if I donāt stand up for my āworthā now, when will I?
I think we all need some good weather, lighter days and a project to focus the mind that doesnāt involve a hospital visit! 
I certainly do 
(thankfully, and I am very grateful, abemaciclib hasnāt affected me yet - but I suppose sitting on the toilet for a larger part of the day wouldāve taken my mind off most things )
I echo all your comments/thoughts.
I feel like I am 90, itās the unknown of what is to come; I saw my oncologist for the first time last week and just cried fgs !
She seemed bemused that I was so upset.
I remember when we started chemo and I had my hair cut off, there was an Acer tree in the garden that had lost its leaves quite suddenly and I compared myself to that. Weāve lost our identity but come Spring we will start to bloom again 
There is such a lot still to contend with, itās far from finished, we just have to get used to the new normal I suppose!
Sending hugs š«¶š»š«¶š»
Hi hugs to everyone who is struggling atm. It does seem to be that you get to the top of one hill and there is another one aheadxx I will interested to hear what you think of the HOPE course @zaran. I am waiting to start one.
Thanks for those that posted photos &news of your hair beginning to come back. You are all a few months ahead of me & it gives me hope!
I had my results appt for my surgery yesterday. The good news was the invasive cancer in my breast & node was all gone:) but they found a 7cm area of DCIS which was a shock as it hadnāt shown up on the mamogram or ultrasound. The area was removed but the margins are not clear enough so I need to have either a reincision or a smx with/without reconstruction. Surgeon said she couldnāt guarantee clear margins so the smx might be better. I am thinking smx might be safer just in case there are any other areas not picked up too.
I have a few days to think about it. Has anyone gad an smx diep with reconstruction on here? How was your recovery?
How are you doing @Bex1 and @caz1970 I hope you are recovering 
. @cf640 how are you?
Love to everyone xx
Hi @booklover1.
You got your results quick, I havenāt had a date yet hoping this Friday 
sorry to hear you have to face further surgery having found an area of DCIS though must have been a shock!
I took the bandages off a few days ago and it is a very neat scar but I get a stinging sensation every now and again and my boob is swollen so feels like I have the lump again 
.
Hope you are healing ok @bex1.
This journey just seems never ending at times.
Love to all