Good morning Marilyn,
I understand your frustrations, I feel on here we can be ourselves, as we are all on similar journeys. We have to go what is right for us, each day is very different.
I hope thes thee rest of your day goes well, I’m thinki of you xx
Good morning ladies,
I hope that you are all well today 🤗
Edinbird, how much steroids was you given? I was only given 2 days, but 7 days of anti sickness. So, I’m sure today that I will be extra tired! I was hoping to go into work today, but thought I’d best not chance it..
If you still have steroids, take your last ones around 1pm and you should sleep through xx
Morning lovely ladies,
The site drove me nuts yesterday, it seems i have to request a new password if i want to post!
Anyway, yestarday was day 6 post chemo and possibly mentally my lowest, i know i am lucky to have friends asking after me and wanting to see me but i am not interested.....i am fed up with messages like....you are stronger than you think (not today im not) be positive...(piss off...you try having chemo) keep smiling (wtf) I know im having a wee rant but what i do know is you ladies will understand......family want to come down to see me....i am not good company right now.....
However i feel a little better today, it started well with being able to go to the loo! such a bonus!!
I shall endeavour today to move around a bit more. I love reading all your posts and totally identify with you all......xxxxxxxxx
Thanks, it’s just the getting into a position that is comfortable for my stomach too. I ended up laid on my side with my hand between my knees to get the pressure point in the skin between your thumb and forefinger. That worked until I needed to swap sides. Eventually I must have got off. Didn’t hear my husband go to work (he’s in another room though)
Also got my period which freaked me out initially seeing a load of blood in the toilet! To be fair it’s almost due and what with stopping my pill it shouldn’t be a surprise but it was! Once I realised it wasn’t in my pee I felt a bit better! 😳
try Yoga Nidra.
Learn the routine so you can do it without guidance.
Go through the routine mentally to yourself when you wake up in the wee hours
I’m the same hugs are out for now 😞
Anyone else finding they wake in the night as soon as their last meds wear off? Last night I woke at 2.30 after having taken at 8.30 - previous night was 4 having taken at 10... last day of full meds so a little anxious about tomorrow but I do have one set I take until Saturday. Gonna try and dig out some anti sickness bands I have somewhere unless anyone else has any bright ideas for something to settle me in the wee small hours?
I am able to read posts but not ‘hug’ or comment unless I reset my password every time.
I obviously have pissed of the gods of technology.
Otherwise all is well.
Love and blessings to all,
Thank you that was so kind and thoughtful.
If I have to log out and back in anymore I am going to 😠😠😠
It’s natural as a mum to want to shield our children from pain no matter what age they are but there are times like this when it’s out of our control and that is the worst feeling as your powerless to take this away from her.
You can help her by getting yourself as clued up as you can on all things breast cancer,it’s so much less frightening when you fully understand the process and the reasons why she is having to do this.
Take control of all the practical things that you can do for her while she is going through treatment and remind her this is a blip and you will all get through it one step at a time.
Its all consuming while you are in the midst of it but times passes by so fast and you do come out the other side, I’m 4 years post diagnosis next month and can barely believe where the time has gone!
Rage as as much as you need to but this stage will pass and an acceptance of the situation creeps up on you all, dig deep she needs you X
Yes! She went past Singleton hospital and I’d told her about you so she sent you my love as she went past and thought of MBJ!!
hope all went ok and you feeling ok xxxx💐💐
Hi all, tomorrow is the day for my daughter: 1st of 6 treatments with FEC.
She kept saying that she was so afraid! I look like the most demented person in the world not knowing what to say.
We had agreed that we were shaving our heads together before 1st session so we booked for Browns in Durham in advance, but they really messed up the appointments and now we will not be able to do it.
We learned that in Durham there are no Feel Good workshops, no goody bags when starting chemo and the room looks sad and dark... probably is just me.
Gosh, I wish I wasn't so nervous, I keep waiting for a miracle or just to wake up and discover that this was just a nightmare.
You have no idea how much I admire you all, so courageous and brave. Me, I am a misery, I am seriously having trouble accepting her pain, the fact that she is losing her hair, her eyebrows, and I keep nodding with a very straight face when I just want to smash my head into a wall!
Sorry guys, having a bit of a melt down!
When you say Singleton you don't mean Singleton hospital in Swansea do you. If so then that's where I was today getting my first dose. Gosh wouldn't that be fab.
Hi Trixielady and Girls
Well chemo went ok. Some issues finding a vein - painful. Cold can was ok I found the pressure points on my forehead the worst. Can any of you lovely girls tell me how long before I should wash my hair I am not keen on the hay stack look!
Post chemo felt very nauseated juts after the treatment ended had another tablet, but it's been there most of the time. Managed to eat some toast earlier and just had two cream crackers. Going to take my antiemetic soon just waiting to see if I kept the crackers down. No sickness though and I have a lovely new bowl by my side too incase. Feel a bit more normal now but earlier it felt like the Megga hangover from hell with non of the fun before it. I had to come to bed as all the house noises (husband being helpful bless) was really getting on my nerves. Hope I won't be awake all night now as I have slept a bit, but I will just go with the flow. Hope you are all ok I have not been able to read today's posts yet. I hope this posts now as I need you girls. Almost afraid to press the button😕
Hi Sissy60 , so what's been happening? Why can't they do EC without a port thought there was another ways? Xx
Hope you had good time in Ponty with your pal and it was good therapy!
Wondering how MBJ did today. My daughter walked past her hospital in Swansea and thought of her:)
The site is very random and frustrating! Never know if it works or not🙄 I’m prob not starting next week now, saying they can’t do EC without a port... that just not true! Oh well will be a bit behind you guys but will benefit from all the wisdom and handy hints🥰 Hope everyone ok💞
Well ladies congratulations on your first chemo, hope your all doing well ? I've had a lovely time playing about with headscarves with my friend, although the hair is now coming out thick & fast think I've got my head around it. Looking forward to the drive home tomorrow, Sissy60 the thought of your garden shed sounds wonderful bless you, how are you feeling now? I've got really lost of with the thread don't seem to be able to take it all in at the moment, so welcome to all our lovely new ladies and good luck for everyones 2nd chemo next week, pleased your oncologist appointment went well Sarah xx
Thank you for your words of encouragement. Believe me when I tell you that chemo will be fine. Just remember to treat it as friend who will get you better.☺. Put another way I'm not dreading my next session. xx
I love your energy ❤️
I am still feeling well, just a bit tired and Nauseous today. I’ve taken my anti sickness tablets, so I’m feeling a lot better. I’m hoping to go into work tomorrow because I’m on a course, and I would like to finish it 😁
Beautiful picture too, thank you for sharing.
I hope the rest of your evening goes well xx
The cold cap looks very fetching 🙂 The room you were in looks nice and bright.
One of the chemo rooms the nurse showed me last week is dark and tiny. Hope I’m not put in there tomorrow,it’s depressing enough as it is.
You talk of bright hair colours has me thinking. My daughters is into wigs at the moment, lots of trendy young things are apparently. She’s got some colourful ones and I have to say she looks fabulous in them. Then again she’s great at make-up so she manages to integrate whatever hair colour she’s wearing into over all look.
For some reason I fancy putting some blue/turquoise colour in my soon to be acquired fake hair. I was considering more sedate ‘age appropriate ‘ colouring but on reflection, b*llocks to to it I’ll order some blue hair:))
Susie B forgot to mention that I have had 3 surgeries since October and I was terrified of the first one but can honestly say it was nothing to worry about and I am dreading chemo much worse. There really isnt much pain and my first surgery was a mammoplasty so a lot of tissue was moved around but I didnt need to take anything more than paracetomol and ibruprofen
Thanks girls for your rundown of your first experiences. Very reassuring. One thing I have been told about the cold cap is that it is essential to fit it really tightly. I am so hoping it works but I understand that you do lose some hair even with it on but I am hoping to keep enough to not have to wear a wig. Must go shopping now as I need nail varnish to get myself prepared for Monday x
Thanks for the words of encouragement re surgery. I keep telling myself nothing has been as bad a I expected, biopsy, CT scan, PICC line insertion, chemo, cold cap, so why not surgery. Again it's that old adage, fear of the unknown😨. Loving the cold cap photo. I found the cap was fine and not at all painful, even during that first 10 to 15 mins. Just hope it was put on correctly🤠. Self injection with the needle💉 too much of a coward for that so my husband will have to carry on doing that one.
Perfect rundown of first day!! Excellent! Scared to write much in case it disappears!
so good to hear you made it to comic shop!
Yes ok bit nerdy...but comfortingly normal 😂
so pleased it was ok.. wish the site didnt keep logging us out😬
Due to freaking the radiographer I might not start till March😥 they refusing to do first chemo without port which is crazy as I know it’s done all the time with EC. Hope I can still be in feb group.. can’t lose you gals now!
I really hope the forum gets back to normal soon! I was so gutted that it was playing up yesterday as I'd planned to keep in touch with you guys all through the session, to keep me sane as much as to keep you all in the loop. Never mind.
I think I've found the trick now, write the post offline in a separate notes programme or something, then log out and log in to the site and copy and paste and post really, really quickly!! I still can't do the "hug hearts" things though without it sending me packing.
Anyway - I want to catch up with quite a few of you so this might end up being quite an essay, I'm sorry!
First - Sissy60 - I'm so sorry about your portacath trauma 😞 😞 😞 how awful! are they going to reschedule? When I had mine they didn't worry my head with complications at all! or maybe I just wasn't listening? (la la la la la la) . I totally get that you were probably crying more about the chemo itself than the port - as I know you've been wobbling on the whole subject big time. The only advice I can give is that my port - although looking a bit weird and making me feel like an android (it doesn't hurt but I'm very aware of it), worked like an absolute DREAM yesterday, and given how feeble my veins are and how much of a struggle it is just having blood tests or getting a cannula in for anaesthetic, it was so much easier. As for the whole chemo yay or nay dilemma. I was obviously really hoping it wouldn't be necessary, but now (especially since - so far - albeit only 2 days in) it's going well, I'm actually really glad of the opportunity to have that extra bit of insurance. I'm all for throwing absolutely everything at it. Ask me again in 17 weeks after I've had the cumulative onslaught of 6 cycles and I'm all bald and exhausted!! 🙂
And talking of hair - oh my gosh, Ocean21, I could have written this paragraph word for word!!! :
"I love my hair not for 'wow look at me 'reasons but because after my marriage to my ex husband broke down , in the face of his relentless nastiness , how i presented myself to the world was the one things that i could control and he coudln't. My hair is also one of the things people know me for."
I'm 100% known for my mad colourful hair. And it's also very much a case of me reclaiming me and living loud to contrast with 12 years of a very abusive marriage where I basically didn't dare be anything other than super meek. I have already had it cut short in preparation for the chemo and I'm lost without it. On the plus side, I'm kind of blessed on the wig front as there are tons of cheap, mad wigs out there that fit my aesthetic. I gave one a test run on Sunday and it was rather fun. But I can't wait for my "real" hair to come back, and for it to be strong enough again for me to bleach it and colour it again.
Trixielady - I hope you are having a wonderful time in Pontefract with your friend. We can't be at 100% activity during all this, but I don't think it's healthy to be at 0% either. Do what you can do, listen to your body, slow it down when you need to. The benefit from spending some time with your buddy will be huge.
Right - I've just got to take a quick break from writing this magnum opus to go stick a needle in my gut. Not looking forward to this part!!! 😄
OK - that was....ok! I had a few moments of standing there with the needle pointing at my belly muttering "I can't do this, I can't do this", but then when I finally got the balls to stab it in, I barely felt it! the needle is tiny, it was an absolute doddle. Yay, go me!
Right, where was I?
Ally and Edinbird - seeing you both get on well the day before my first go, really helped calm my apprehension. I hope you are both still feeling ok.... Ah just saw your latest update Edinbird - I know what you mean about all the lotions and potions!!! I don't usually do any of that lady-pampering stuff! You've reminded me about the nail oil, I haven't done that yet today. It all takes up so much time!!
SusieB - I'm in the majority here in as much as I had my surgery first, 2 lots in fact as I had general anaesthetic and an overnight stay for both the lumpectomy on Jan 21st and the portacath implantation last Thursday. But in both cases, honestly, it was a doddle. I was pretty much fully back to normal both times in 2-3 days tops. I think I was less worried about surgery because I had a hysterectomy 2 years ago (that was my first time in hospital other than childbirth) and I was terrified before that .... but it went so smoothly that this time around I was "yeah, go for it".... 🙂 I was waaaay more nervous about the chemo - because it's new. Everything is super scary the first time, our minds are our own worst enemies!
I'm going back into theatre after I've finished my chemo and radiotherapy to have my other boob lifted to match my new pert post-lumpectomy one, and I'm honestly not remotely phased by that thought. Hope that helps a tad?
Seaside Sar, glad to hear that you have been doing so well as to only warrant 10 minutes of your consultant's time 🙂 that's great news. I'm not looking forward to seeing my hair start to come out either, but I'm at least expecting it.....
As for me ...... my first FEC infusion yesterday went remarkably smoothly. Cold cap first (I'll try to attach a super attractive photo of me when it had just gone on, mardy forum willing!!). It was deeply unpleasant when it first went on, proper mega ice cream brainfreeze, but without the fun of the ice cream. I wasn't sure if I'd be able to hack it, but lovely nurse assured me that it would be fine 10-15 minutes in. I set a timer on my phone so I could count down the time, and by 8 minutes in I was absolutely completely adjusted to it, and apart from the heaviness of the hat I barely knew it was there for the rest of the session.
As for the actual chemo part, it was a doddle. "sharp scratch" as they say when the needle went into the port, but from that point on it was completely straightforward and painless. A few saline washes and then 20 minutes each for the F, E and C. It went really quick. No allergic reactions thankfully, and no nausea or metallic tastes etc etc. They brought me a nice jacket potato with cheesy beans half way through and it was delicious!
Then 90 more minutes of the cold cap and then it was hometime. Had a short walk (2 miles) with my other half in the afternoon, just to give myself something to do, and because I was glad I felt up to it (I did have a little sit down on a park bench half way round)
I kept waiting for the side effects to kick in all evening, but, touch wood, nothing yet! I slept well last night, had another little walk this morning, and have been eating normally. Feel a little "heady" - you know like that fuzzy feeling you get when there's a headache due - but other than that, all good.
Am about to head into town to pick up my weekly order from the local comic shop (I'm a nerd), which I didn't expect to be able to do this week, so....result!
No decorating the front room though! Nothing too energetic 🙂
OK -time to attempt to post this!
Ive not been able to log in!! I slept almost straight through 4pm - 4am just waking for dinner (bolognese which tasted yuck!) and my sickness pills. When I woke I felt sick after about 2 mins of looking at my phone and I normally look at it until I drop off if I wake at night so that was frustrating! Once I got up I was ok.
Washing my hair and just generally getting up was a mission as I have long hair but don’t normally use conditioner (not cut mine as I feel like I’d be giving up immediately) so what with a slow wash, conditioner, combing, nail oil, body lotion (that equally I don’t use), face cream, eyebrow lotion (for the semipermanent makeup), brushing my teeth and mouthwash - finally ready to get dressed!! I am thinking about just working from home more and more as it’s such a rigmarole!
Feel a lot better now I’m up and eaten my lunch. How is everyone else faring? It’s also good that I don’t have to constantly update people, just reply to well wishers which is a lot less draining 🙂
Hope you're all OK today.
I had my first review appointment with my oncologist today. It was very uneventful as I have been remarkably well 😂 All that's changed for my treatment plan is the addition of some Difflam mouthwash for the dry patches that I experienced and they recommended Senna for the bowel problems I had. I was there for 10 minutes, having sat waiting for my appointment for 50 minutes 😞
The more notable event is in fact my hair, which has decided to slowly depart, 15 days after chemo 1. I woke up at 4.30am and was able to pull more than several strands of hair from the underneath at the back of my head. As I am typing, I can feel tingling in the sides of my head and can pull out small tufts at a time. It's not particularly noticeable but it's creeping me out all the same.
Now for a phonecall to the salon about that wig...
Oh bless you and thank you. The first chemo is the worst. It's the fear of the unknown that's the problem. Have you had any chemo yet? I can't remember, I've seen some of you posts but can't remember if you've mentioned chemo - sorry. I know where you're coming from when it comes to having things attached to our bodies. It almost feels you're shouting at world 'look at me I'm ill'. I didn't know what a portacath was so l've just googled it. Oh got it. Similarto my PICC line but in the chest area. Looks more discrete than the thing attached to my upper arm just above my elbow. Look up PICC line then you'll see what I mean. To be fair I've had it in for just over 2 weeks and I hardly notice it's there until I have a shower . I've bought a selection of covers from annabandana to help protect the line and to make a fashion statement ha! ha! when I start wearing short sleeved tops. As for sleep I've forgotten what a good night's sleep feels like since 7th December (diagnosis day and 2 days after my 62nd birthday). xxx
Susie... surgery scared me too but not as much as chemo does! It’s not a giant op and recovery is fast. You really will be ok.. promise! 🤞 Honestly it’s better than chemo.. once its done it’s done and it’ll be so good to know that any Gremlin remaining will be GONE!
i just went for portacath procedure and they refused to do it and sent me home as when they told me complications I kept crying my head off. Really it’s the reason I’m having it making me cry but they said I was too distressed to consent! Poor young radiographer but I only had an hours sleep, in fact that’s usual these days 🙇♀️ Hope this bloody posts the site is logging me out every time I log in...xxxx
My 1st cycle was fine which I had on the 8th. I came away with enough sickness meds to sink a battle ship and a couple of other goodies. I suffered with fatigue from day 3 to day 5, the 4th being the worst. The the nurse I saw when I had my PICC line cleaned thinks it was sudden end of taking steroids. Hopefully my onc will wean me off more gently next time. The only other problems were really minor, that awful strange taste, which affected my taste buds, indigestion which resulted in rather loud and embarrassing burps and belches😲😲 and very mild constipation which soon cleared (no pun intended) after taking a sinlge dose of an over the counter laxative. I was back to my normal self by Saturday😊. I'm seeing my onc next Wednesday so hopefully he'll prescribe some meds to put everything right. My next chemo session is 1st March. As for surgery it'll be a lumpectomy together with some or all lymph node removal.
that seems to have worked! I gave up on the forum yesterday it drove me nuts...
how did you first cycle go? What op will you have? I had a lumpectomy and thankfully sailed through it, it's the chemo that's knocking me about, and iv only had one cycle!
just starting with a test message as the site likes to boot me off or send my messages to ether....xxx
That seems to have worked. Right lets try again🤞.I know many of the February starters have had surgery first then chemo, I'm doing the opposite. I have a small, 21x18 mm agressive HER2 (positive/negative inconclusive) gremlin, which was found during routine 3 yearly screening, stage 1 or 2. I'm having FEC, which after my first round seems to have injured Gremlin slightly - just hope its not wishful thinking. Anyway is or are any of you fellow February starters doing the same. The thought of surgery after chemo is scaring the s**t out of me😭
Just testing too. Reset password twice and lost last feed to the ether. Perhaps there's a chemo monster out there that swollows everything up👹. Here goes nothing.
sending ‘hugs’ to all. I am having problems clicking on the heart icon ( it logs me out- or something- changed my password x2 so far).
Thinking if you all,
Testing testing. Is the board back to normal yet?
Huge good luck to those starting today!
I will post longer later when I'm sure I'm not going to be sending my words into the ether 🙂
Good morning Edinbird,
How are you today? X
I am feeling well, I felt a bit nauseous when I first woke up, but now I’m ok.
Good luck ladies for those of you that are starting your chemo today ❤️
Hoping this one posts!
hurrah Sarah! Well done! One down YAY🙌👏🏻👏🏻👏🏻👏🏻 No 🤮 and just chillax you deserve it! Xxxx
MBJ Jo Brand just as hot as Sharon Stone!
Be a feisty nurse/patient tomorrow. Take no nonsense!
Carry on Chemo... filming near you🤦♀️
Hi Ocean 21
I know what you mean about hair and identity. Mine has nearly always been long and blonde. But just come back from the hairdresser's with a Sharron Stone cut. Cold capping tomorrow. We just as you say need to To rock a new style.