Hi ladies, hope we are all getting by ok today for those who haven’t reported in ?
I live in North Wales, near Holywell… lovely part of the world… of course, NHS Wales is different, but I’ve been happy so far with my care, having never been ill b4 (I’m 42) so this is my first experience of the health system for me anyway. I work as reception manager for a local council, and so far very supportive.
Oncologist today was fine, confirmed I was positive everything! HER2, PR & ER!!
So, I’m gonna get TCH - 6 cycles of TCH then another 6 of the H. Also 3 weeks of radio after chemo part finishes, and rounding it off with tamoxifen after!
I’ve decided to try coldcapping, as I’ve got to b in all day for the first 2 cycles, so thought I may as well try it.
Just need to sort someone to see to the dogs when I’m in all day, first round is 14th Feb…!!! Happy Valentine’s Day to me!!! ?
Sarah xx
Ah Sarah so you’ll have the same as what I’ve already had minus the herceptin (I’m er+ pr+ her2-)
Good old Docetaxel! I very quickly settled in to a routine with it. I had 4 cycles all do able.
Don’t hesitate to ask for advice.
T-2 days! Off out with a friend tomorrow to do a beach clean followed by coffee & cake. I’m a big believer in the power of oxygen to heal us. Got to get out before Storm Doris hits at the weekend!
Right ladies I’ve had an idea.
Presuming most of the world is on Facebook now, how would you feel about starting a group? I do struggle with the format of the forum (not complaining at all about this beautiful community!) but I don’t always get notified about posts & feel FB is in a more user friendly format. Also easier to share pics/info/humour. We could make it private if anyone has any misgivings.
Just a thought. No biggy if no one is interested.
Jojo xx
Hi Jojo, I’m would be happy with a FB group. It would be easier for posting photos etc.
Jo xx
Fb works for me, I use my phone mostly and these threads are hard to follow on here lol xx
Re: Facebook - Ann and I have already hooked up and I think it’s a good idea but not to replace this forum as some people don’t do facebook. So as long as we also post and support on here but also share stuff on Facebook too.
I wouldn’t want to leave anyone out. maybe we can create a private group - how can we find each other though? I run a comminity page called Broseley Totally Locally and you should be able to find that easily. If you search for Julie Owen you will find a million!!!
Let’s see if we can hook up - I’ll create a page and see who joins up.
Julie
Hello everyone
I have been following this and the Jan starters for the last week as I wasn’t sure which one would fit best with my chemo timing.
I am on 6 cycles of FEC-T like quite a few others, and had my first dose last Thursday. I certainly felt dosed up afterwards with the bag of pills, GCSF and mouthwashes! Side effects have been mixed - no nausea, but definitely some after effects from the Dex steroids and probably the single dose GCSF. Not quite sure what to expect as I go through this so just taking each day as it comes.
I live in Colchester and I haven’t found any local support groups so hope I can get support through this forum.
Tessa
Hi everyone,
Firstly, thank you for your welcomes and I hope everyone is doing ok today.
I live in Manchester (originally from West Midlands until I was 12- remember going to Ironbridge on a school trip Jules!)) and am being treated at Christies. I would be up for FB too.
Well… had my bloods done yest for the gene testing and then went out for lunch with friends and then for tea with mums from school (with 2 glasses of wine!), so feel I enjoyed my last day of “normality”. In work this morn & then off to Christies later for echocardiogram, bloods & see onc for signing the forms etc. I had ecg done 2 weeks ago at first visit to onc. Then tomorrow is the Big Day! The lovely lady at the Family History Clinic yesterday, used to be a chemo nurse, so it was nice to chat to her. She said the nurses had tried the cold cap themselves, so they would know exactly how it feels to discuss with patients and she said thet half couldn’t stand it, but other half were fine. So still going to try. Took a selfie this morning after washing hair, thinking well this is the last time it will be like this for a while, as even if I don’t lose it all, it’s going to be greasy (as can only wash once a week), frizzy (as can’t use straightners etc) & a lot of grey roots (as no dyeing)!! Kinda thinking maybe bald will be easier!!!
Zena - I know what you mean about my nan and mum, but yes it is positive
Tessa - welcome x
Sarah - We have a caravan in North Wales near Pwllheli, not sure if anywhere near you?
Take care all,
Max x
Hi all , woke up feeling rubbish this morning think its all the recent prodding , poking and injections .i start chemo next week so god help me .though this site is great id also be up for fb as i do find its hard to keep up on here lol x
I’m sorry I’m not on fb as my job . But you all go ahead girls I’m very sick and prob making you all worry xxxxx
Hi zena sorry to hear its kicking you again hopefully it start getting better .have a feeling i may end up the same and now starting to dread it , my bodys struggling with all the prodding and poking over the past few weeks , its taking its toll already so used to being ill and getting on with it but this week has got me xx
I got very very bad morning sickness - and put in hospital so I’m very bad with nausea- it’s like the feeling when your just about to be sick but constantly never going - hard to explain but painful and debilitating… you will not be the same Hun… it’s so rare … the sickness drugs are good I’m just an odd one …
sorry the prodding is horrible, I know - feels like our bodies now not our own and belong to this new scary world …
I have promised a friend I will go see her and walk on the beach at the end of this chemo , so I have to do it … I can’t even think about my kids it overwhelms me with worry … my 4 year old won’t come near I’m so sick and my boys are looking worried too . My 9 year old read me some twits last night and it was heaven xxxxx
Awww bless them , its so hard for kids and so unfair that their innocence is ruined by crap like this .mine just keeps hugging me , he told my mum he got upset at school and told his best friend as he knows he won’t tell anyone, he dont want his other friends gossiping about me so does not want them to know .he told her he had to tell someone and feels bit better now he has …he has not said any of this to me not sure why .but least he is talking to someone x
Oh gosh Hun , it’s so worrying I know … lovely that your little one has got such a good friend x
My bcn gave me a book called mummy’s lump. I think it’s helped a bit as they could see pics and ask me stuff … although when they very little, it’s all just very overwhelming …x
Hello ladies,
Just playing catchup. I’ve had my hospice day today. Somewhere I thought I’d never be but I am really enjoying it. I did some silk painting, had a manicure, was well fed and watered and then finished off with a group session. So glad I was well enough to go even though I’m still in chemo fog.
So sorry you are feeling crap Zena. Big hugs to you hun. I’ve been describing it as being like pregnancy. I was queasy but not sick and desperately tired…just the same now. Oh, and my brain…where did that go?! I agree about FB. I use it so would love to have a group but think it’s important to keep this thread going for those that don’t use FB.
Max, I’m from a little village called Kettleshulme…nobody has ever heard of it! I’m under The Christie/Stepping Hill. I’ve also been referred for genetic testing. What does it involve? I’m not too worried about the procedure itself but I have 5 daughters so really don’t want those faulty BRACAs. Is it your first chemo day tomorrow? If so, good luck.
I think I need to spend a bit of catch-up time to see where everyone else is up to. I’m terrible at names at the best of times!
Hugs to you all.
Jo xx
Hi Everyone
Zena - sorry you are feeling so bad.
Ann - hope it goes well tomorrow - I will be thinking of you.
Jo - I’ve had a Friends Request on FB from a Joanne Coward - is that you?
I’ve had a bit of a mare today - despite so much fruit and veg etc and plenty of water I have been in so much pain with constipation. I had a Beauty/Pampering session with a group of new ladies and although it was good I felt so bad. Going to seriously take steps to avoid any more! Today is Day 7 so I will be taking stuff from now on! OH bought me some Aloe Vera Juice so will have some before bed along with tabs!
The abrupt oncologist I met a few weeks ago (a locum) has left! So my 1 week appointment is now next Wednesday instead. Hope this one will be nicer.
Hope you are all okay.
Julie
Hi Julie, yes it’s me. I was just pooping in to let you know I’d sent you a friend request but you’ve already noticed. Anyway, it is me and not some random nutter…just a regular one that you sort of know!
I’m off to be ladies. Night night and big hugs to those who need them xxx
Ann, please don’t apologise! You have done a fantastic job at catching up…so much better than me.
Good luck tomorrow with chemo. You sound ready. I took iced drinks with me. I heard that sucking ice cubes helped to reduce sore mouth. I wasn’t up for that so went with cold drinks. I put a bit of lemon juice and ginger (puréed root and sieved) lots of ice and diluted it with water. It was really refreshing and worked for me. I also took ginger buiscuits, Haribo tangtastics, ginger chocolate…didn’t touch any of them.
I’m day 4 and feeling good this morning. Was expecting to drop a bit today as the steroids have finished but ok so far. Quite wakeful last night which a lot of ladies seem to have got with steroids.
Please ask away if you need to. You can find me on FB if that’s easier and PM me. I’m Joanne Coward (not too many of those!) xx
Hi ann thank you .i start next week now starting to dread it , purely as ive been feeling weird this week with lightheadiness and like i cant keep up with my breath …not something ive suffered with before .think chemo is going to be a nightmare if im like this already x
Morning ladies
A FB group is a great idea, so is anyone up for setting it up as a private, or secret, group?
I am a week on from first chemo, think that’s about the same as Jules and Zena. I haven’t had any nausea, and don’t know if that’s because I am not prone to it or the pills I took. I had Emend, ondansetron, domperidone and dexamethasone. Gosh, how that lot rolls off the tongue, eh! I also had the single shot Gcsf jab on Friday.
The steroids or Gcsf, don’t know which, definitely made me bloated, red faced and hot flushes by Saturday, and was a bit wired! The out of hours chemo line said it’s pretty common and it takes a bit to get out of the system. My onc agreed that I could stop the steroids and will review the dose before next appt.
if any of you have the gcsf, then it did leave me feeling a bit achy, esp in the hips and shoulders, and feeling a bit stuffed up.
As as for constipation, foods that I found helpful with a lot of fibre were Fibre One cake bars ( not particularly cheap) and Ancient Harvest lentil and quinoa pasta ( high fibre and high protein), and surprisingly didn’t taste too bad when drowned in sauce!
as for dry mouth, I got salivix pastilles over the counter, and will ask for them on prescription. I didn’t like my chemo nurse advice to suck on barley sugars, as I am trying to avoid coating my teeth in too much sugar!
Good luck for those of you starting today. You may want to warm your veins up beforehand unless you are having a line put in.
Tessa