Wtp - great news about your hair! Mine had started coming back slowly at the end of the EC but it’s still very fluffy and also lots of white! Was very dark brown before so not sure what’s happening. Hope your white cells are behaving and you can have treatment this week. I will hopefully be on 3/9 this Thursday.
Beedot - like you my arm is not painful although still has furrows. I keep forgetting to use the hirudoid as it’s just one more thing to keep remembering to put on/swallow/inject and my poor brain has really lost the plot. Can u believe yesterday I was supposed to collect another child from school along with my younger son and I completely forgot!!! How awful is that??? Half an hour after we got home I got a call from the school saying “errrrr we have x here and he says he is meant to be going home with you” I was mortified! Rushed straight back to collect him - luckily his mum saw the funny side of it!
Thanks Egg.
I’m er+ (7/8) and her2-.
I did know that chemo wasn’t ever meant to get rid of my lump or even my enlarged lymph nodes (the biggest had 1cm of cancer in it - huge!) completely but was hoping for a better response than I’ve had. It’s the thought that the cancer is still living and breaking away and circulating that is my main concern.
I find both my oncologist and surgeon a bit evasive - I like facts and information and they seem reluctant to give it to me which makes me suspicious! My OH says it’s probably because they don’t actually have anything to tell me or any answers at the moment, not that they’re withholding it! It’s easy for him to be rational!!!
I haven’t got a date for surgery yet - am seeing the surgeon in a couple of weeks.
X
My dear friends
It saddens me to see so many of us low and browbeaten.
But as Egg says, we’ve had a rough 6 months, not counting the awful time waiting for results and diagnoses.
We will be with you Egg every step of the next 7 weeks.
Beedot - I had a nasty rash at the beginning of Tax on my neck, and I got something from the pharmacy that calmed it down - no use me telling you what it is as it’s Spanish. Maybe you could ask?My nails felt like yours initially, but that awful sensation soon disappeared, and all I have now is a white line on my fingernails for each chemo treatment. I have no idea what will happen when they reach the top! Wtp, my hair is exactly the same - really fuzzy. but very little growth yet above the forehead - but hey- it’s actual HAIR, and I’ll take anything.
Blue and Scotty - I can only imagine how you must feel waiting for MRI and surgery.
Maybe it’s different in Spain, but I’m ER (and PR+) but HER2- and I’m so glad I had my surgery first.
I’ve had my planning session for radiotherapy and will start in a couple of weeks, so I’m using this time to sort out things I haven’t been able to do before.
yesterday, for the first time in 6 months I didn’t sleep in the afternoon, and actually felt fog free enough to do my Spanish Tax return.
I know I’ve had my Bobs, but really those apart, and the fatigue, leaves me feeling I’ve got off really lightly compared to most of you.
We are all in it together, for the long haul, and I am so grateful I found you all.
Much love and hugs.
Lovely to have a group hug. I’ve caught up with all your news and I really feel for those of you who are waiting for surgery. I’m sending you love and hugs. There’s no point me saying try not to worry as we all worry all the time, don’t we?
Well done Scotty on finishing and I don’t think you’re missing out on anything as none of us have felt the euphoria we expected/wanted to feel.
I haven’t posted for a while as I have nothing new to report. Nearly four weeks since last chemo and all side effects still present and correct. No hair at all. I realise I have got to be really patient. I have made a list of all my side effects and I will tick them off as and when they go. But it’s going to be a long haul. Saw the oncologist yesterday and he said some side effects can last a year. Patience!
I’m starting radiotherapy a week today and have my prescription for letrazole which will start about same time. R x
For Scotty66
Another brave warrior teddy crosses the chemo finish line.
Your badge and certificate are recognition of your bravery and tenacity in successfully completing the course.
Welcome to the Grad club Scotty.
I’m not sure if I am allowed to post this link, but a fellow breast cancer survivor posted this on Facebook.
Maybe too late for us lot, and not relevant to me as it only applies to HER2+ cancers, but interesting nonetheless.
Hi all,
So grateful for the group hug - we all need it. Starting rads 30th May but feeling overwhelmed by it all at the mo so pushed to the back of my mind. I think its the 60 mile round trip and , as some of you have said, the length of time we’ve all being dealing with this awfulness already. Off for Herceptin without chemo this aft- should be getting the 'no chemo; euphoria today but really not feeling it. Has anyone been affected by the cyber attack? My hospital was one of the worst hit apparently so who knows what this afternoon wil present!
Group hug back at all of you Xxl
Dear Ebim it wasn’t a rant at all it summed it up so perfectly. Everyone on here has been through so much and yet we just get on with it and try to keep things normal. I really hope that everyone continues to check in and post through their radio and ongoing treatment, as it helps so much.
Blue, sorry to hear you are down and worried about stopping chemo. I read on one of the proper sites that studies show that the effectiveness of chemo before or after surgery is the same. I had the same worries when my chemo start was delayed by 3 months after my initial surgery and I voiced it to my consultant using your exact words- surely it’s circulating, looking for somewhere else to set up home? And his response was “it doesn’t work like that”. I can’t say I know how it does work but I was comforted by his words.
Ebim - that is not a rant, you are good at rallying the troops.
Egg - that’s a lighter moment, so funny, forgetting a child! At least you didn’t leave him somewhere and forget where.
thanks to all for the tips.
Hugs
Beedot X
Hi Ebim
I’m due treatment tomorrow thanks. Bloods today were fine so going for it tomorrow! Next week will have all 3 on. Wednesday so not sure which day it will be moving forwards.
I don’t think there will be ever really be a normal if that makes sense. I guess at some point the side effects will lessen and we will get on with all the day to day things we did before, but I don’t see how things can ever revert to “normal” after what we have been through. Lots of us will be on some kind of treatment for a while I am guessing and also monitoring so I guess it won’t completely go away? I know exactly what you mean - people assuming once chemo over that’s is - but it isn’t!! I’m also rather sick of people saying “you look good” when really I don’t!!
Scotty,
The Herceptin jab was ok, this was the first without chemo but they have all been subcutaneously into my thigh. It wasn’t really painful but my ankles did swell up a bit last night, so hoping this is short lived and not a sign of heart failure!
Ebim,
On the subject of ‘normal’ , I feel its hard to know whats normal as I feel the treatment so far has stripped me of my identity and I don’t recognise who I am any more. I feel I can see a person who has got through chemo but its not really me, so how can anything be normal when I don’t recognise myself? Only on this forum I feel do people get this.
Egg, you and I are chemo buddies tomorrow…but it’s my last one! It sounds crazy, but I’m looking forward to moving on to the next stage of treatment, ie surgery for me, but am obviously not looking forward to tomorrows chemo and the effects! I’m still feeling anxious re my mri results and the effects of chemo on my lump not being as I’d hoped, but from reading stuff online, see that my type of tumour rarely gets a complete response from chemo (I think 9%?), which means there are a lot of women getting a partial response like I have! I do still wonder though what that means for the future and my prognosis…
With regards ‘normal’, I would have said before all this that normal is what feels right to you. And at the moment, this definitely doesn’t feel right!! Bearing my definition in mind, I do hope to come around to being a way that feels right to me again and feel comfortable with myself, though do not expect it to be what felt right before all of this! I hope that makes sense?! At the moment, I’m clinging onto aspects of my personality that are largely unchanged from before - there aren’t many - and hoping that I can cling onto them as a foundation for the new me.
X
egg, i am also a bit fed up of people saying ‘you look well. You would never guess you’ve got cancer and are having chemo’!!! Because I know i look like poo!! Swollen face, fat body, fluffy patchy hair, hardly any eyelashes or brows, circles under my eyes like bruises…you all know the score!
I’m also fed up with people telling me I’m doing well! That’s because I put on my happy face around them! Recently, I’ve started telling people how I really feel…and they don’t ask again, they don’t really want to know the truth it seems!
Hello everyone. Just checking in on the group hug. I’m a bit behind as haven’t been on for a while mainly due to feeling very low, so it was some comfort to find I’m not alone.
Was away in north Devon on holiday last week and spent what seemed a lot of it being very teary and having dark thoughts about the future. The side effects of the last tax are still with me, in fact I have a couple of new ones. My ankles are very puffy like pregnant lady feet - had my bloods done yesterday just to check nothing wrong but onc thought it was just another side effect of the tax. My muscles in my legs and arms ache constantly and walking up any slight incline is painful. All of this makes normal seem a very long way off. How can things ever be normal when there is a constant fear of recurrence.
i had my planning meeting this week and my radiotherapy starts Monday for 4 weeks.
sorry for the rant!
good luck to blue2 and egg for tomorrow and anyone else being treated this week. X
Egg and Blue. Please let us know how it went, and Blue I will get your badge and certificate ready.
I’m feeling very low again - that will teach me to try and feel “normal” again.
Almost 3 weeks after my final Tax, yesterday a mahoosive BOB appeared right next to the two I had to have drained previously.
I only finished my antibiotics the night before.
So, later this morning I’m off to A & E again, where I’m fairly confident they will admit me for another GA and draining.
Docetaxol - the drug that keeps on giving.
I thought it was over, but you know what they say:-
I hope those of you have been feeling so very low are starting to feel better…
Oh jackie that’s rotten news - I hope the drs can sort out BOB once and for all! Keep us posted.
Getting ready to head off now to hospital with my charged up Kindle!
Blue will be hand holding you telepathically!
Oh no Jackie - poor you. Hope it gets sorted. Sorry to hear you have been feeling low Esther. Egg and Blue, good luck today. Teddy warriors, we must stick together through bobs and tough times. R x
Oh Jackie, I do hope you’re OK. I think you’ve had such an awful time on chemo, radiotherapy will surely be a breeze for you? (Apart from the commute every day for weeks).
Good luck today Egg. I told my husband and youngest this morning that some people get a gift, flowers or have a celebratory meal to mark their last chemo. My OH said ‘oh’!!! Clearly nothing planned in this house later then!!
Hope everyone not been chemo’d or visiting A&E can enjoy some spring sunshine today.
X
Woo hoo! I am done!!
Oh Suze - you made me laugh with your 30% off- although I’m sure it’s not funny losing 3 nails ?
I had my 9th weekly tax today- neuts back up to a whopping 3.3! Amazing what a wk off can do!
3 weeks to go and MRI booked for next thurs after chemo and hopefully results the following thurs. really scared- feeling your pain Blue. Hate that scanxiety (such an appropriate word!!).
Jackie - nooooooooo!! I couldn’t believe your last post. You really, really don’t deserve this!
Blue - congrats on finishing!!! Do you know when roughly you’ll have surgery? Fingers crossed for the MRI!! When is it or have you had it already?
Lots of love xxx