You made me laugh for the 1st time today😂. Loved the eating bit. My Mum, of all people is driving me nuts. I know she means well, but if I get another email or phone call asking how I am or getting on I'll scream. I've already lost it with her once this week. We have since apologised to each other. But then........guess what? I had a letter yesterday and another email today asking the same question. I know she's worried but she just keeps reminding me that I've got BC. I suppose we'll have many more sh't days. We're only human after all.
Rant over, feel better now☺
Oh flipping hell now I dont know what to do. Wish they all said the same. Wonder why you shouldnt have it? A friend of mine told me to definitely fast but the oncology nurse said definitely no....
I am so impressed that you can write to everyone on one post how do you remember what to say to everyone. We have 2 cats and a dog. Two of whom were kindly left to us when our daughter and family moved to teach in the middle East.. we have been out to visit but not for a over a year as we have built a new house in our garden, now living in it, and then of course came diagnosis. Your cat looks lovely I will try to attach a photo of mine now, tried earlier and lost whole post.maybe send this now and photo on its own. So keep a look out for some ginger and white furry things!
Well done different advice going around. I was told no probiotics and the booklet on diet and cancer says no too. Oh and I love a Yacult in the mornings 😣
Yes I have Netflix will have a look. A walk and ice-cream sound something for me to aspire too. Once the nausea wears off.
I have been to Brighton with the family for a seaside walk.
Ate vegan mint choc chip ice cream 🤗 every day do something you enjoy.
If you have Netflix I recommend the film ‘Healing’ currently on there. It is a bit Americany but the mind -body- spirit link that is explored is fascinating.
Hello all, interesting about probiotics, I stopped before chemo...why? I have no idea..but will start up again tomorrow.
emotions are a weird old thing, yesterday I was all ready to tell the postman to feck off if he had given me the wrong look....and when a friend in Spain gave me chapter and verse from some old cut and paste crap I found myself sticking two fingers up at my I pad!
Today has has been so much better, even had a little walk....and actually managed to see two of my residents....
appetite is back with avengence....today I have polished off....porridge with fruit, a toasted tea cake two packets of crisps a cheesy mushroom omelette three satsumas.....and now looking forward to me dinner!! I feel like one of those people on " my 600 lb life" waiting to be fed......
i am relieved this site site seems to be working now, I am following you all and I bloody love every single one of you.....xxxxxx
Sounds like you are pretty prepared, Daisydi.
And don't worry about the crying, I'm a tough old bird usually but I've cried in front of the docs twice, and had a third good hard sob in the hospital loo.... I should imagine they would be more worried about you if you didn't cry at least a little bit on this journey
seems to be working at the moment. Just been for my look around chemo unit and made a fool of myself blubbing again. Asked about fasting and they said definitely not. Told them I got travel sick so they will give me extra stuff on Monday. Also recommended taking probiotic for gut health, anti sickness bands and a hat to come home with as hair will be wet so just ordered everything from Amazon so I'm ready to go. Also wig lady will be contacting me and I get one free! Unit was bright and airy though and not depressing. Ive also bought Simple shampoo and conditioner and my friend has sent me some very expensive products to help with coldcapping. Cant do any more now, just need to get the first one under my belt.
Yayyyyy! I appear to be able to contribute again. I haven’t been able to do anything for two days and was getting to the point of tears with frustration (doesn’t take much at the moment) and there was an awful lot of expletives coming out of my mouth. I did manage to send a private message to Sissy60 to see if that worked but then couldn’t access her reply until just now. I have been keeping up to date with everyone’s news and I feel there are a lot of cuddles needed at the moment. Xxx
Oh how fantastic are your hubby's work to move that meeting for you??? That's so heartwarming!
I wasn't really brave, I was cacking myself! But I had no choice with my big strong man being so unexpectedly useless he isn't usually phased by anything
Hi Implausible and everyone
You're braver than me. I'm such a coward that when my husband told me he would be going to a meeting in Glasgow involving 2 nights away during stab week I freaked out😨. Upshot is, that said meeting has been rearranged and up to 40 people have agreed to date change so my husband can still do the deed. I can't thank them enough.
MJB, and Daisydi, I washed my hair with Simple shampoo followed by conditioner the day after chemo, then very gently every 3 days. Hair still intact, apart from the 4 that escaped the other day, at day 13, but I'm sure it's not going to hang around much longer. Still I'm ready now as my wig arrived yesterday and the styling stuff , etc arrived today. Definitely intend to continue with cold cap until the day arrives, which hope it won't , when my hairdresser will look on sadly, shaking her head and tell me she can do no more for me😢
Sissy, Is it worth asking about having a PICC line instead, it doesn't seem as daunting as the thing they want you to have. I had a local, had my arm layed across a cushion and away the nurse went. I could close my eyes or look at the screen if I wanted to. Not scary at all. I must admit though, I didn't want this attachment but it does make taking bloods and giving chemo easier. Have you thought of asking for a sedative or could some meds be given to help ease your fears. I was on medication for anxiety from just after diagnosis day until chemo day, so perhaps that made things a little easier for me.
Susie I got access denied too, but I logged out and in again and it seems to be behaving now. Fingers crossed. I'm going to try to "hug" your post as I haven't been able to do that
@Susie B wrote:
Just testing. Just wrote a bit to you then I got access denied 🤔. That's a new one
I am well today, apart from having period pains (of all things..)
I feel the feeling is like being in a trance.. The steroids made me eat a lot though, so try and have snacks ready. It helped me with my nausea, it’s like being pregnant 🙈
Our bodies are definitely not ours. I’m taking every day as it comes and resting xx
I hope the rest of your day goes well xx
Ha ha I had a mild swear word in my post and the forum has automatically bleeped it out. We're in the forking Good Place!
As for paracetamol, I thought that was ok as long as you check temp first. Oops. I took some yesterday.
Just noticed we are up to 666 posts on here now. Thought I'd better post quick to get us past the number of the beast!
(Ah, we're ok, Ally and MBJ saved us while I was still typing )
Sandra in Durham I really feel for you! I genuinely think that this bloody thing is even worse for our nearest and dearest than it is for us. Or tough in a different way, at least. I know that my partner - although doing his best to be alternately very stoic and piss-takey when he is here, as he knows I respond well to dark humour in difficult times - is privately finding everything very difficult. After my first chemo session was over he looked so drained. I think he had been very anxious on the build up. My 16 year old son is taking it hard too. He had a big cry the other day, about everything else that had ever gone even slightly wrong in his whole life, because he didn't want to admit what he was really crying about.
I think the worrying about the chemo beforehand is much worse than the actuality, so hopefully once you are - both - one down, it will be easier? People keep telling me that the 18 weeks will go quickly. I hope they are right! So yes, all the very best of luck for today!!! Re goody bags, I was given one with some lotions and potions and a "relaxing colouring book". I haven't touched it and would be more than happy to send it to your daughter if you want to private message me your address?
Sissy, if you don't end up starting till March, don't you dare leave the Feb group! You can always join both, I'm sure, then you get double friends But it will be much better if they can do the first infusion to your original schedule via cannula or whatever (if your veins are up to it) rather than having to delay. Waiting to start is the worst bit. I would nag for that if I were you!
Susie B I asked my other half to do my tummy jab for me and he totally freaked out. He wouldn't even be in the kitchen with me for moral support while I did it. He's such a giant wuss!!! The chemo nurses were trying to talk him into it but he was still "no no no no no no no" Luckily- like all these things so far - the anticipation of it was far worse than the actual deed.
Daisydi, re cold cap, I've pretty much resigned myself to the fact that I'll still lose a lot of hair, so that I won't be too disappointed if/when it happens. But I've read lots that says that even if you lose it, if you cold cap it still does less damage to the follicles, and therefore grows back better, so I figure it's worth it just for that? Worth a try. Hope your nail varnish is super glam I even did my toes, for the first time since I was in my teens!
Ocean21, sod "age appropriate colouring"! I'll be 52 in April and I have no intention of stopping colouring my hair every colour under the sun for at least the next 30 years! I'll be the crazy old lady with the mad hair walking a giant iguana to the shops on a lead It's your first session today? I hope it goes brilliantly. And if they do put you in the darker room, turn it to your advantage and have a little kip I was actually so relaxed by the time they got to the drip part of the infusion I reckon I could have if I tried!
Trixielady, glad you had a great time with your pal. A tiny bit of normality and fun is so important. The more we sit at home in our own company, the more time we have to mope and dwell I think. Safe drive home today.
MBJ congrats on getting through your first session. Hair wise, they had put conditioner on my hair for the cold cap, so when I got home I rinsed that off with lukewarm water, and patted it dry then let it dry the rest of the way naturally. That was 2 days ago and it's getting a tad greasy now but I'm going to leave it a little longer. I think my nurse said not to wash it more than twice a week. I hope you had a good night's sleep and the nausea/fake hangover is dwindling.
Edinbird, I wish I could answer your question about when I'm waking normally, but the first night after chemo my son and his friend woke me by coming home VERY LOUDLY at 2.30am! And then this morning he came into my room at 3am to see if I was sleeping. Which I was, until he woke me to ask me if I was asleep The first time I got back to kip after. Last night not so lucky. I've now put a sign on my bedroom door banning middle of the night interruptions! Side effect wise I am still very lucky, so no nausea to speak of yet. Just a woolly head and intermittent tiredness. I also feel cold. Not like I've GOT a cold, I'm just needing to put the heating up higher than usual and wear more layers. The thermometer says my actual temp is fine though.
It's worth trying those anti sickness bands, I wore them all through my chemo and overnight the first night, and I swear they helped. Although I guess I might have been ok without them, who knows? They also gave me 3 days of that fancy Emend stuff which I'm sure also did a lot of the legwork. I've taken my last one now so let's see how I feel tomorrow....
You poor guys having to deal with periods too with all this! I had a hysterectomy 2 years ago after years of horrendous periods and fibroids, best thing I ever did!! So I'm very lucky on that count. I feel for you, really.
Marlyn I wish I could "hug" your post because it sounds like you really need it!!!! Have a 🤜 fist bump instead I know what you mean, I'm getting all the same encouraging messages from friends, sometimes you get a bit fed up of being told what a wonder woman you are, when all you are really doing is head down, getting through it as best you can, and trying not to worry too much about the future.... but it's still nice for everyone to check in with us and we know they all mean well. I did see some pals yesterday when I went to pick up my comics and of course they all asked about the chemo and all that but once we had got that out of the way, we just all had a good chat about normal nerdy stuff, and that really gave me a lift. So maybe take one person up on their offer of a brief meet up, it could be a real tonic.
Moving also I think is a good idea if you can face it. I'm doing a 2 mile walk every day. Don't fancy it before I go. Don't desperately enjoy it during as I'm weaker than usual and have to stop for sit down breaks on the way. But once it is done, I feel much better for it. And they reckon it keeps the fatigue at bay, counter intuitive as that sounds.
Glad things are "moving" in other ways too
I haven't been since chemo day, think it's time for me to brave one of those horrid laxative drinks.
Ally, sorry you didn't make it into work, I know you were looking forward to it. They've signed me off for 4 weeks from my first chemo, so I can get through the first full cycle and the **bleep**ty week of the second one. But when I do go back I've negotiated a 3 day week (I only used to do 4 and I reckon I can live without that 4th day's pay for a while if I'm careful, and if it works well I might never go back to 4!). And for my low immunity weeks I'll be working from home as it seems there is always someone in the office with the lurgy! I am looking forward to getting back to it though, I can feel my brain dying!!! Probably why I am writing such long posts on here just to keep it ticking! I'm also worried about what I'll be able to manage when I do go back to work, my work isn't physical but it is very mentally stretching (maths, basically), and I'm worried I just won't be able to think well enough to be at all useful. I'm so scatty at the moment! But I guess I'll just have to see how it goes when I get there. Thankfully my second in command is coping brilliantly since I've been away and I'm sure she can prop me up a bit if needed when I get back the mentor/mentee roles might swap for a while
Glad to hear that they are on the case fixing the forum! Thanks for calling them Sissy. It has been a nightmare. I didn't realise how dependent I already am on you lovely lot until I couldn't chat to you on my chemo day. I felt totally cut off from my best support network.
MBJ my eyes feel tired but I'm not having major problems with light. I've heard that can be a side effect though. Wonder if they can give you eye drops for that? Worth a call to your chemo nurse I'd say....
Phew that was another essay. Sorry!
As I usually include a photo, and I've just found out it was #loveyourpetday yesterday, here's my cat Rio, who I love every day she is being especially cuddly with me recently, which is probably just because I'm home more than often due to not being at work, but I wonder if she can also tell that I'm not at my best.....
Better than yesterday when I came home. Next time I will go straight to bed. I have not been sick but nauseated most of the time. Managed some rice crispies for breakfast. My head is the worst like as if I can't really wake up, I did cold cap so maybe that has something to do with it too. I rang the triage earlier to see if I could take two paracetamol I had already checked my temp which was fine. The nurse took a while to decide and I could hear her on the computer. Gosh our bodies a not our own that's for sure. Thanks for asking I hope you are doing ok too. X
I didn’t, but smells are awful for me! Anything with a fragrance is turning my stomach.
How are you feeling today? Xx
I anybody or did anyone suffer from photophobia, my eyes are so sensitive to the light. I had first chemo FEC yesterday. Thanks friends x
I’m on my period too 😩, it definitely doesn’t help..
Ok re medication.
I understand about having a plan in place, and not knowing what you can manage, especially as how feel can be very unpredictable. I was disappointed this morning that I could not go in 😒
Rant away please it’s what we all are here for when we are allowed to log in!!!
Feeling every bit of this for you and friends/family can be great but can say oddest things that make me want to deck them lol. Or cry. Usually the latter! I think hospital think I’m a neurotic loony... seeing onco again tomoz. I’m glad you are physically recovering but the ‘poison’ can have a very lowering effect on our system so I’m not looking g forward to that bit as I’m low as I can be.
I CALLED BC CARE AND THEY ARE WORKING ON SITE TO FIX IT. Hopefully be ok by tonight. I assume others called as they knew about it...more calls the better! It’s terrible for us all at this time to not be able to get posts or reply 😬😬😬
Hugs to all. And if you see this nettynoo sending you love and it will be up and running soon xxxxxxxx
You really make me laugh. Yes I know what you mean by be strong etc etc. Feel as if I have been run over at least twice by a big bloody red bus. This is something we just have to endure it's bloody horrible we don't want it and are no stronger than anyone else.
I hope the posts now 😠😠
I was given three days steroids, three days one anti sickness and five days another. I’ve been taking the steroids at breakfast and lunch and the others before bed (one lot is every 6 hours) and it’s those wearing off that seem to get me.
I was told to take a week sick from work so I’m not needed or expected until Tuesday but I really want to get a plan in place and just don’t know what I will be able to manage which I hate 😕
Guess my period will be draining me too
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😕