Marlyn, nothing is tmi on this thread sweetie. The reason the support is so great on here is that there is nothing we can’t discuss.
Morning all, I'm a bit late to the table as I've been struggling on the bowel front, oh my....so much worse than first cycle! Senna did diddly squat, have now progressed on to the movolat and prune juice....god it hurts....edinbird....fingers crossed for you too...especially going to have a scan, can't even begin to imagine leaving the house today while I'm in this state...
loved all your beautiful pics, really made me smile whilst sat on bog with iPad ( tmi)
say another prayer for my bowels please????? Bloody love you all to the moon and back xxxxxx
well done you.
I completed an MA part time whilst working ( teaching) in my 20s and that was tough enough.
Couldn’t imagine doing a PhD , at any age.
Congratulations most certainly deserved.
Yeah it is hard to make future plans without knowing how well we will feel..... I'm hoping to get to an event in New York in October and I would usually have everything booked by now, but leaving it till the last minute this time as I don't want to get my hopes up too high
And oooh! Dr James!! Very cool indeed!
MBJ, beautiful happy photos, its so lovely to see everyone's photos ,all these lovely memories, well here's looking forward to the new memories we will all make with our families and friends. I've just received P&O brochure and really fancy the Caribbean cruise in November but my hubby is saying its far too early to be thinking about a two week holiday but maybe a week in December if herceptin injections don't come with too many problems, at the moment I think its only my lovely memories and dreams that are getting me through each day, I start off trying to be so positive but then read, see or hear something that sets me off, absolutely love the photos xx
Morning all. Love seeing all the photos. Seems like you are feeling ok Sarah and Edinbird after your second session. I had CT and bone scan but only after 4 positive nodes were found. When it was just the one after first surgery they didnt bother. Thankfully they were clear but I was beside myself with worry. Think thats only natural. I had second guessed every scenario and have now come to the conclusion that it was pointless as it was so exhausting so just trying to go with the flow now. I am now on day 16 and have still shed no hair. Going to wash it in a minute so lets see what happens. I will continue with the cold cap in any case as there is absolutely no way I am going bald. Hope you get out today Nettie xx oh and Happy Birthday Seaside Star xx
Glorious photos Dr MJB and well done for all that hard slog.
HAPPY BIRTHDAY Seaside Sar. 🎁🎉🎂 xxx
Oh yes, happy birthday to Seaside Sar from me too!
And Susie, I'm in Swindon. Kind of ended up here by accident but I've been here 18 years now, so I guess it's home as that's the longest I've lived anywhere (left home when I was 16 and then hopped around a bit)
And I'm still laying in bed too. Been awake since 6.15 though. I'm in no mad rush to get vertical....
Love that jumping off the boat pic Rosina!!!!
I've never done that. Added to the bucket list
Last post then I really must get up. Had to make my own coffee this morning, so drinking it in bed and writing here. Yes, it's the E that's the main culprit when it comes to hair loss and no one has mentioned to me that coloured hair may not cope so well with cold capping. I too have no intention of going grey gracefully, my dear Nan was colouring her hair well into her 90s, and I intend to do the same.
Loving the photos. We don't have many on our phones or my tablet as we both prefer to use cameras. At home we have got a digital photo frame and currently have last year's photos from our holiday in Greece and 40th Wedding Anniversary photos from Dubrovnik, prior to diagnosis. I did have our photos on there from when we went to London in January, before chemo started, but it just reminded me of why I was there in Jan, and not June, which is when we'd planned to go.So last year's photos it is.
Nettienoo, can't believe the way you're being rippled off. £19 is disgusting. Just hoping you get to escape soon. Sending my love❤.
Implausible, Wiltshire, next county to me then. Know it pretty well as it's close to Hants where I grew up and we lived near Swindon for a few years. My nephew lives in Wilts too.
Have a good day everyone, Happy Birthday SeasideSar, good luck to those of you who have got chemo today. Deffinitely brewing up a storm here.☁️🌨🌨🌨🌬🌬🌬🌫☔☔.
Rosina, lovely to put a face to a name.
Implausible, amazing, especially the alien autopsy one. 😂😂😂😂 and sex? What’s that? I seem to remember it was something pleasant in a past life but now.......no way Jose.
Trixielady, I was started on 5 days wbc the day after chemo and they continued that on for 3 more days in hospital so 8 days in all. Worrying that it doesn’t seem to have worked at all.
Edinbird so hard not to overthink everything eh love?. We all do it. You are doing so well though. Xxx
And a couple more. Didn't want to risk too many in one post.
I want to see everyone else's happy times! As long as they don't make you too melancholy. Like I said, there will be more to come!
I think that's why I haven't asked for scans. I'd rather believe the docs when they say "oh don't worry it'll all be FINE".... And I know if I did have them I'd be a wreck waiting for the results :/
Anyway, here's happy photos from my holidays.
Hard to believe we will ever feel as carefree as this again isn't it but I know plenty of breast cancer survivors (because this disease really seems to be common as muck!) and they are all now living life absolutely to the full, so I know we all will too. I dont think we will ever forget this experience, or totally stop worrying about it coming back, BUT we will be able to travel and go to concerts and have delicious meals out (including all the prawns you want, Sandra ), and maybe even get a sex life back! (I assume I'm not the only one who isnt really in the mood right now ) We just need to get through the rest of this treatment malarkey and then it's all uphill from there....
I so hope your iffy areas are nothing, Its awful having to tell family, I was so lucky my sister was actually with me and had tests within the week and then needed 2 vacuum comb biopsy( think thats what they were called) showing the signs of the little buggers so the ball started rolling but they said they what check yearly as the biopsies removed the suspect ones if you could believe that! Big big hugs xx
I too get in a right state prior to having scans which are to do with BC. My lump was 21mm, grade 3, HER2, with some nodal involvement.and I just remind myself that my CT scan towards the end of December was clear. I think it's human nature to react the way we do especially with this diagnosis. If we're not worrying about scans and treatments, we're worrying about results and side effects. The whole thing is sh*t.. So I'm not going to tell you not to be anxious, but just hang on in there. Take care xxx
Morning lovely ladies
Hopefully your not too bad from chemo ? unfortunately only time will tell
Implausible from what i was lead to believe it is the epirubicin that makes us lose our hair.
Photos are fab xx
big hugs to you all
Please don't think you upset me it's just my sense of humour. I just thought it was laughable that the nurse could think that it was dye rather than chemo that makes us bald. Maybe coloured hair is more susceptible but who knows.
Sarah I met up with an officer whose wife’s cancer had spread to her bones and I was all ready to stamp up and down and demand scans and they offered me them before I even got going! So was so relieved when the bone one was clear but then got the news that the CT showed some iffy areas... it could be anything but it’s hard to be positive when so many things have already gone the wrong way. I can’t bear the thought of having to tell my family and friends if it’s spread just like I can’t bear the thought of telling my sister and cousin if it’s genetic still waiting on the letter on that. The liver is pretty much the worst place it could be since it regenerates so fast. If I wasn’t bunged up I would be crapping myself 😬
You look lovely so happy and full of fun. It's hard to remember how that feels I know. I also feel I can't let the worry guard down incase I get my legs chopped from underneath me again like they were siix months ago.
I know what you mean about spending money on TV in my awful ward there was no TV and the WiFi would not let you do anything not even post on here. I don't buy a big phone package as normally for data I use wi-fi. But I too was lonely in hospital and not well enough to read. So I paid for extra data to watch sky go on my phone lasted all of tow episodes of SUV! So then got offered a bigger deal which I jumped at. Probably still got most of that credit left.
But just do what you need to do to keep you sane in there. I hope you get to go home soon.
I assume they are reviewing your chemo for next time.
Think I had better get up, hubby is up and seen to the animals so it's safe 😄
Free the Stafford one! let's hope you get home today. Hopefully you enjoyed the company of the TV at that price. Its windy up here today I'm in between Sunderland, Newcastle probably nearer to Durham and Chester - Le -Street.Sorry can't remember if I've already asked you were you on the WBC injections ?. How are you feeling this morning? Big hugs xx
Storms are generally worse in the west of Scotland Susie we get the remnants out east but there has been plenty of rain and wind. Hoping it’s ok when I walk round to the hospital as any more knots will mean more big lumps of hair away...
And I didn't start mine to cover grey hair, as I didn't have any then, but it's a handy side effect as I spy a couple of greys in my roots as I haven't bleached it since diagnosis.....
So yes I intend to do this for many years to come!
Good for you Implausible colour it girl
I am going to colour mine too when I have any that is actually attached to my head!
I have always said I am NEVRR going grey, I never intended to grow old gracefully so why start now. My mum was 85 when she died and she was the most glamorous lady I know with a full head of blonde hair.
Edinbird good luck with the poops and the scan!
I haven't been offered any scans at all to see if anything has spread elsewhere, even though I had a positive lymph node
My docs' (surgeon and onc) are both singing the song that it's unlikely to have gone anywhere else and if it has the chemo will sort it anyway.....
Maybe I could ask for scans after the chemo, just for reassurance?
I hope your scan gives you that reassurance straight away x and yes it has been crazy windy down here in Wiltshire too, for about a week. I've lost a few tiles from my roof which will need sorting, my other half's garden fence is down, and the lid blew off my wheelie bin and ended up halfway down the street!
Yep, after a quiet night it's just starting to get windy down here in Somerset🌬. From what my husband told me last night it was pretty bad up in Scotland. He's in Glasgow at the moment.
thanks for all the information.
I obviously wasn't a prime candidate for a trial of which I'm pleased about. It was just that I will be taking herceptin with my T 4th chemo and I'd heard it mentioned a lot. Hopefully the side effects from the tablets will be manageable for you, from what i understand I'll be starting tablets afterwards too. Big hugs hope you have a lovely day xx
thanks for all the information.
I obviously wasn't a prime candidate for a trial of which I'm pleased about. Its was just that I will be taking herceptin with my T 4th chemo and I'd heard it mentioned a lot. Hopefully the side effects from the tablets will be manageable for you, from what i understand I'll be starting tablets afterwards too. Big hugs hope you have a lovely day xx
"Free the Stafford one" - I'm on it!!!!
Along with the reverse side "let them watch telly for free, you moneygrabbing barstewards!"
Funny you should mention happy photos, I've just ploughed back through the last 3 years of Facebook photos as I felt a bit guilty that my reporting of the nurse's words about dyed hair had upset MBJ
It was more the fact that she seemed to think that pulling a curtain round would mean I couldn't hear her, it made me giggle out loud. Which presumably she heard as it goes both ways
So I thought I might print out a little collage of my more recent hair abuse, and then if by some miracle I manage to keep hold of a half decent amount of hair by the end of this (unlikely to be honest by the state of my pillow and shower tray over the last 48 hours), then I can present the nurse this with a flourish! I won't, of course, because I'm not that passive aggressive but I had fun making the collage anyway
Let me go find a couple of better photos that aren't just close ups of my head I passed a few this morning when making this.... they made me smile, but I also barely recognise the person in them at the moment:/
Oops have loaded photo but it looks like it has messed up anyway, all the resizing I did in the app has gone so some of the pics I'm out of shot! Never mind, you get the jist what a waste of an hour!
I don’t know if Storm Gareth is still hitting everyone but it’s very windy here! Lots of love to you all from windy (and probably rainy soon cos it always is!) Edinburgh 💙
Aw Nettie lots and lots of love to you xx those photos are so much fun you’ll get out soon!!
I’m currently working on free the Edinburgh one when it comes to bowels... seems banana and porridge are insufficient for my needs and kept me up with stomach ache last night... I have my liver scan this morning and I’m so anxious about that it won’t be helping. Not about the scan I had an MRI for my heart but just about the implications... no reason it should have spread to my liver but there’s so far no reason I should have any of this horribleness a 15mm lump so small but it’s already clogged up my lymph nodes since October so who knows where it’s been headed these past 6 months? But it’s only grade 2 and a lot of triple negatives are 3.. so not quite so aggressive... anyway can’t keep summising just got to let science do it’s thing. Wish my bowels would do their thing!
I just bloody well love you girls. All of you. Implausible, right get that “FREE THE STAFFORD ONE” board on now and get over here. It might just work. I have joined you in your cheesy cravings. When they read out the menu options I’m like “anything with cheese?”. I am seriously thinking of getting my husband to bring in a block of Cheshire Cheese (my fave) as I’m sure I could down it in one go. Prawns though Sandra.........nooooooo. Love them normally but even the thought now! 🤢 I’ve finally succumbed to paying out £19 for 3 days tv. Such a rip off that I’ve been resisting for days. Really wanted to see The Great British Sewing Bee last night on a decent sized screen rather than my phone.
I am desperately trying to remember how it felt to be the normal woman I was as feel consumed by all things cancer/chemo whilst in hospital. I’m sure you can all identify. This whole process makes you not feel like you anymore. I’m going to post some happy photos of me doing something fab before all this kicked off so I can try and remember a bit of the old me. Yes I know I’m too old for music festivals but I loooooove live music. I would love to see other people’s happy/crazy “before all this **bleep** went down” pics too. Love and hugs. Jeanette xxx ps don’t judge me on the blow up man. It definitely did not belong to me. ☺️
Hi fellow cold cappers
Don't give up yet! I've only got 40% to 50% left of my short hair but I'm not giving up just yet. Who's to say that the hair loss won't slow down. Cleverly cut hair can make a difference, as my hairdresser showed me today, plus as I said earlier, grey hair for some of you, may be lurking, thus filling those gaps eventually. If, like me you still have a fringe, then who's to know what's underneath if you wear a hat. Yes I've got a wig for when my colour grows out and turns grey, and I've got some bandanas for bad hair days, but going bald voluntarily is not an option. BC is not going to win on this one, not against me anyway.!!! Sorry fighting talk over, I'm off to bed🛌🏾. Night, night.
It'll grow back sooner than you think, MBJ, I promise xx and you can have a lovely trendy pixie cut to start with and then back into whatever style you want. At least you'll have your hair back quicker than the rest of us in here xxx
But yeah, it's a bugger I wonder if my male, bald oncologist really understands how hard it is for a woman to lose her hair? My hair has always defined me. It's my mask. I already feel naked without it from having it almost all cut off before treatment....
But it WILL come back. And I shall continue to colour the life out of it
Well Implausible .and Deano
It's so good to know that loosing our hair and looking exactly like Friar Tuck is nothing to do with the chemo that nearly killed me or that the cold cap did not work. OH NO it's my fault for having highlights for the last 40 + years. Funny I have never been bald before. What a cheek. Also the lady next to you Implausible may be having different drugs. The young girl next to me was on a different drug as love her she was also pregnant. I saw her yesterday and she still has a full head of hair. So girls it's not our fault blame the drugs not the hairdresser. Can you see I am a bit mad tonight my dressing gown was covered in hair now when I took it off. One dose only bald for 6 months. ☹️
I had capped on my 1st session and my 2nd session is on Friday but my hair started to shed on Sunday and it’s gone very thin I’m debating not cold capping on Friday. I’m having my hair cut short tomorrow and booked in thurs for a wig fitting. My hair was doing really well as well but I don’t wanna look like a crazy witch woman with long thin hair and bald patches. I have visions of if I cold cap it will pull my hair off and I’ll be like friar tuck.
Hope your hair remains and to be honest I had a good session regarding side effects and everything went ok as I expected it to be bad after reading other experiences on here.
well I’m upset about my hair but it helps everyone else is going through it - my friend says it will grow back but we can’t grow you back - bless it made me smile
Love to everyone ❤️
And lovely Nettie , thank heaven for phone and internet and video calls!!! At least you're not completely cut off from the world.
But seriously, if they don't let you come home soon I'm going to come and protest outside your hospital with a sandwich board until they do!
I can't believe I'm still up at nearly 10 o clock on chemo night! Although I'm starting to flag, just watching to the end of something on telly. Other than tiredness I feel fine, touch wood.
Food wise, my cravings are all cheese related. Blue cheese is the one I really want, of course, because it's off limits
Also, talking of food, I was surprised to see a couple of you mention bananas for constipation as I've been through my whole life thinking that bananas bung you up! they are always the first thing I *stop* eating if I'm constipated.
I had a quick Google and it looks like I'm half right. Under ripe bananas cause constipation, over ripe bananas relieve it. Every day is a school day!
Re neutrophils. I got the print out today of yesterday's bloods. They like neutrophils to be over 1.5 to proceed with chemo (although the onc nurse told me they will accept 1.3 and up if you seem otherwise well). Normal range in healthy people who aren't being systematically poisoned like us is 2.0 and above. Mine was 1.96. Nurse said that was really good. Now I can't know how it would have been without the stupidly expensive special immune boosting honey....but that certainly gives me an incentive to keep taking the stupidly expensive immune boosting honey
Sandra, reading all that you've been through really makes me grateful for "just" having breast cancer! It really does! Hope you are on the mend as time passes x
And finally- hair - I lost the most I've ever lost in one go today, when i rinsed off the conditioner from the cold cap. It was quite sobering. But I'm still really encouraged by the other lady I met today. She was on her 5th cycle, her first 4 were fortnightly. She said she lost some hair after cycle one, and lots after cycle 2 which nearly prompted her to give up on the cold cap, but then none at all after 3 and 4. And she still has a really healthy looking head of hair. She says she can tell it has thinned out but it looked fine to me. No bald or patchy bits..... so there is some hope.
I did have to laugh though as at one point she had the curtain round her bed closed and the onc nurse was in there talking to her. Curtains obviously don't offer much sound protection. So I heard the nurse telling her that the reason her hair has coped well is that it is so healthy and "some women bleach or colour their hair too much and it doesn't fare so well".... And I wanted to yell "I'm right here, guys"!!!
Right...I'm off to bed. 2 down, 4 to go, let's get this over with and get our lives back! With or without all our hair!
Nettie I think I was 2 days before you on the Monday as this is my third week then chemo again next Monday. I thought neutrophils and wbc rose up again this week. I certainly feel a lot more normal although I didnt really suffer very much in the first place. I cant believe you have been in hospital all this time. I was trying to run this by my sister as she is the only family member near to me and we dont know how we would cope. You have done so well. Lets hope they get you sorted and home soon xxxx