Good morning Penn, sorry you are having a bit of a rough time of things. Can you not take a non-drowsy anithistamine? Then it wouldnt make you so sleepy. I only use non-drowsy ones when I need them. Have a word with the doctors or nurses, at least that would be one side effect you wouldnt have.
Day two with my family today and the plan is to get my 70 year old mum on one of my horse today. She has ridden all her life, but die to leg ulcers and 2 knee replacements she hast ridden for 10 years, so today is the day if we can actually get her on board. It will be videoed so we can all have a laugh later!
I am living every day to the full pre-chemo. I am absolutely dreading it, I think mostly as I have a phobia of being sick, hence having Emend prescribed first time. I know I can handle the nausea and other SE's but vomitting will be another ball game for me.
The post-chemo injections are okay to give yourself. It is a VERY fine needle and you can inject yourself in shoulder, thigh or stomach. The thought is more daunting than the actual progress – you’ll be okay about the process after the first time . These bone marrow stimulating hormones are to stop us developing Neutropenia, a potentially very serious failure of the immune system. Prevention is better than cure!
I was supposed to be having one injection per day but allergic reaction (apparently rare so don’t panic) means I have been swapped to one injection of slow release drug to last the week. Still reacting even with piriton cover but being zonked out on piriton every 4 hours to keep allergy under control is small price to pay. Docs again Monday for check.
In addition to my lovely red skin, my taste buds have gone south (almost everything tastes like cardboard) and I had to dispose of hair from shower tray yesterday. Sign of things to come?
I’m going to try and stay awake long enough later today to update all the lists.
Rose I hope you are feeling better, you had your chemo same day as me and I don't feel achey so I hope you're not brewing an infection? Ring your oncology helpline if you aren't any better even without a temp, you don't want admitting when oral antibiotics earlier would have sorted it maybe?
Heartburn has been my whinge today but thankfully that's better, Woo hoo! Forums aren't for everyone maybe one to one counselling would be better for Rainbow? Night maisies another day on our cancer journeys complete!
Hope everyone had a good day.
Penn I have to jab myselfday after chemo thay say it is like an epi pen??? this is for neuts??? OMG not sure what it all means but really so not looking forward to that I have to put it in my stomach. Is that the same as you?
I have got to say that as awful as losing your hair is I actually wasn't too upset when mine went. The tingly feeling is the start I actually shaved mine off a couple of days later as it hurt!!! Felt like having it tied too tight in a ponytale! I then felt that I was more in control of it and it sort of took the shock away? Although I do have a beautiful shaped head LOL or that was what the headstrong ladies kept telling me! I get another wig this time so am off next week to choose another one. Although to be honest I only wore my last one once! Preferred to wear scarves and hats. I do hope you feel better about it once it actually happens.
Good night all and hopefully everyone gets a good nights sleep xx
i just ordered one off amazon, bit different but thought id feel better atually having one here, a horrible thing to lose your hair, this is one thing i m not looking forward too.
lois can i ask you bout hickman lines do they get in the way and do thet leave a scar ive got to have one put in and cos ive no scar on my actual breast, 6 inch one in arm pit im bit concerned, silly really but worried bout the whole idea of a central line, hope u didt mind me asking xx
cheers Lols you are of course right. The being sick I can deal with as horrid as it is at the time but the hair loss is just plain cruel.
A friend of mine had chemo few years ago (not for BC) and she said she really missed wearing her wig when her own hair came back so Im hoping I have a similar experience with mine.
Chezz I'm the wrong one to say anything cos it's my big dread. But you can do this Hun, you won't be the first and certainly not the last just look he many Maisie's there are never mind who will follow us!!! This is for your gorgeous children , you, your OH and everyone you love. You will still be you an amazing August maisie who has everything to offer the world, a year from now this will just be a biiiiiiiigggg learning curve and you will be helping someone else in our position now. As my OH says uve done nothing wrong, head up wear it with pride. Xx ju
Just been on July thread and looks like when scalp starts tingling thats the start of the thing Ive been dreading most. The hair loss. Its started tingling a bit today so Im dreading waking up tomorrow and finding a load on my pillow.
No matter how crap I will feel though I know you will all pull me through it and its just yet another leg of this journey.
Gotta brave the shave at some point no way Im gonna sit and wait for the b**ger to come out in clumps.
Hi Maisie's, been making most of lovely weather walking dog by waterfalls and then of course pub lunch!!!!
Rainbow rose completely understand your decision but please feel you can come back anytime this is such an emotional rollercoaster we are all on and if you feel at anytime we could help you just pop back.
everyone suffering with se's today and tonight hope it all ends soon, dreading my first session but at the same time want to get it over with.
This is going to sound a bit soft but out walking with OH and dog today , gorgeous surroundings, go swimming, woods, waterfalls, sunshine I felt some acceptance of everything. Also everything seemed more alive and fresher and more real am I going crazy I dunno? Another nice thing sat in pub garden and people talking to me ( no idea about bc) and I felt normal, what a relief !!!
Off to read now, have peaceful night all Maisie's xx ju
sorry youre leaving us rainbow, i too suffer badly with depression and have done for the past three years since i lost my hubbie, its a horrible thing, i hope you are getting counselling, my BC nurse says its something i should have and will look into it.
my nerves have gone today re my chemo im worried still over this strange cold/ hay fever feeling ive got, dont want a delay tbh, but not sure whats wrong, think its prob stess or my nerves playing up??
i went to my mums today OH drove first time ive seen her since my op and she gave me £20 and a banana, think she was bit shocked by my short hair but dodnt say anything i usually take her shopping but had no energy today, came home and slept.
hope everyones se are not too bad, sorry to hear bout those who are having probs.
for those going to the bar this week, have a pampering relaxing weekend, im trying too
hi thanks to all you lovely ladies that have replied and given me the much needed support I am feeling better. Lynsey 44 same as you have my appt for chemo 23 aug and look around the unit on the 20th Aug we will hopefully meet up at the windmill centre.I live northshore area of blackpool did you attend the wig demo last weds at rose reception Gill x
Hey tylerrose, if it's any consolation, I'm feeling exactly the same (and I'm not working - you must be superwoman!). Make sure you get lots of rest, me old fruit, to keep as many of those white blood cells as you can!
Wow Penn hope you are feeling better and the allergic reaction to the drugs is wearing off! i seem to get strange allergic reactions so im hoping i do ok! im allergic to the anti sickness drug cyclizine so must remember to ask for somthing else when i go!
As others have said Rainbow im sorry you are leaving us but if you ever want to return we will be here for you xx
Thanks Chezza im going to make the most of next week as think im going to be busy with hospital stuff most of the week after! oh the reality of whats going to happen is sinking in now!
Am i the only one for the 23rd?? do i need a single name then?
Also have any of you lovely ladies got a picc line? my veins are pretty small so im going to mention having one but im a bit nervous about having it, but not having it seems worse at the moment!
Breezy glad you are home did they give you some yellow stuff to put in youyr mouth for the oral thrush thats what I got tastes like aniseed. Just take it easy next few days chicken.
Rainbow if you read this just like to echo what the others have said if you ever feel you want to have a rant etc we are all here for you and whilst we cant take the pain away or make anything better we can support you as much or as little as you need us to. Take care and hope your journey goes well.
Debs glad you pottering round again
Pen hope the piriton works and dont worry about the list you look after yourself first and foremost
Jill/tollie yes we will sort something in a couple weeks
Lyns glad you got your date sorted now enjoy the next week
Hello Maisies , I'm back , got took to a & e early hours of Friday morning with severe sickness and got admitted until lunch time today , like cheap they put me on drips and I had intravenous antisickness and antibiotics just in case , still got Meds to take at home I've also got oral thrush now oh the joys haha and they will be giving me super strength anti sickness for my next cycle so that's a relief . So I'm home in bed tired and still nauseous but eating little and often , welcome to all the new Maisies I will try and catch up soon xx
Afternoon maisies, it looks like you have all been busy whilst I have been away which is good. Glad your op went well sam fingers crossed you get your next step sorted soon, keep your chin up and a good cry will do you good better to get it out than hold it in hun.
No more sickness for me since that first day but just feel off my food toast seems to be the only thing I want to eat and ginger nuts. Taking my sickness pills to keep things at bay (fingers crossed lol!) and sleeping quite abit but it is all doable girls so nothing as major as I thought. Keep getting a nice rosy glow from the steroids so no need for make up ha ha!
I hope the rest of us with se's are coping thinking of you penn and hope they get you sorted quickly. Gilly have a fab weekend with your parents, this bc certainly makes you think about what is important in life, enjoy!
Enjoy your weekend maisies and will catch up with you later x x x
Katherine I will be on Delamere will pop up to Sulby to see you if that's ok If you are too ill can go away!!!
Chezza that would be lovely I can get to Liverpool in about 15 mins.
I am just cleaning the house before Tuesday thought I would get it out the way although have had 3 breaks already and only done upstairs! Can't pluck up the enthusiasm LOL x
Hey Janine, I am so sorry to hear that, I am really sorry that we havent been able to be a support for you and make you feel better about it all.
I grew up near you in Corringham and Fobbing and only moved to Sussex 11 years ago, may family are all still there, wel they are on their way here at the moment.
I hope you make your way through and we are all here for you if you ever need us. Stay strong and your chin up.
Well ladies I've decided to leave the forum. I find it all a bit too much and believe me when you've already been suffering with depression for a year and half it's like you've already fallen into that black hole and there's no way out! So good luck and hope all goes well
Don't know what happened there, thought I'd read all the most recent posts then when I posted dozens more appeared! Yes, I will be on Sulby ward all week - will you be on the ward too then on Tuesday? We'll have to try and track each other down provided I'm not flat on my back/throwing up!
Hello to all the new maisies! 🙂 sorry you have to be here but this is a great group to be in!
Well ive just got my start date fri 23rd Aug. i go have a look round the unit on the 20th so need to make a list of questions to take with me as my head is all over at the moment! but feel a lot better now i have my start date!
Venice are you being treated at Blackpool Vic? have you been given you atart date yet for treatment? i was having a hard time dealing wiht this but now ive got my date im feeling better and coming and reading on here is great for me! you girls rock!! although we are such a big group i loose track of everyones treatment and were we are up to and ive not even started yet with treatment i have no excuse!
hope you all have a great weekend and all side effects are minimal
Just sending an electronic hug to those who are feeling rubbish today, welcome to the new Maisie's. The white cell booster seems to depend on where you get treated, some seem to give it to everyone other seem to wait and see if your white cells drop and then give it to you. I'm told it is very expensive! i'm off out to have some fun on my pre chemo weekend, just painted the nails and ready to go, Gilly R have a lovely time for your parents birthday xx
Venice/gill - it's the waiting that's the worst I think, not knowing exactly what's in store and your imagination starts working overtime doesn't it? Hang in there, it won't be as bad as you think, and we're all here for you xxx
A quick post. Thank you for all your good wishes (MUCH appreciated), I’ll update the latest lists and group names etc when I’m feeling more with it. Reaction to bone marrow stimulating injection version 2 (slow release, 7 day Neulasta) taken last night is persisting but not as marked as with the single daily dose I took on Thursday. As I am not going to take another injection until next round of chemo the Out of Hours Doctor suggests piriton every four hours and see GP Monday unless symptoms deteriorate. Zonked out on piriton.
For those about to have or having these bone marrow stimulating injections: don’t panic. Allergic reactions are very rare, my lovely oncology nurse (Joan) said it was the first time she’d come across someone having this reaction to the injections in her 9 years at the hospital. Trust me to be awkward.
More later when I’m more awake. Hope all having a good weekend.
Hi Ladies I'm feeling on the crap side today can't wait for 1 o'clock to come the I can lock up and go home, my body feels tired and a bit achie but I am on day 9 so into vulnerable section I think although not sure, chill this after I think will have to leave the ironing haven't the energy to face it, how is it when you don't feel well you feel tearful as well 😞 luv to all xxxxRose
Tollie we arent that far away perhaps we can meet up too one day when we have couple of cycles under our belts and know when our good days coincide. Im only bout half an hour away from Liverpool
Right Im gonna brave the Tesco big shop now wish me luck ladies!!!!
Re thw white blood cell booster think if you are on FEC you get them whereas with Ec you dont. However as my bloods went right down with EC they said they gonna give me them now anyways. Think sometimes like with the anti sickness they try to give you the minimum and if on cycle one you are bad they try and sort it out for cycle 2
Venice you will feel better from a psychological point once you get started and getn one under your belt. It sounds really scary but if we all keep a virtual eye on each others SE and make sure if in doubt we call the hotline we will get through it.
Juan Sheet love that advert. However Im no longer the lone ranger as Lols and Daisy are up with me too although Im one cycle ahead so we are now the Dixy chicks aka the cheesy d**ks!!!
glad to hear you doing as well as can be Annie.
Tash re the mountain you arent at the bottom like the grand old duke of york you are half way up. However unlike the grand old duke of york hope you havent had 10,000 men or i will be very jealous ha ha!!!!
Gill you are not alone, I feel just the same today. Just had a really good cry on the OH. I don't have that many really down days but when they hit, I feel like I have been hit by a truck. God help me when chemo starts, praying I get my onc appointment in the post this week so I feel I am a little nearer starting.
Welcome aboard Sarah. looks like there a few of you strating chemo next week. Busy week at the bar.
Chat later I really should get washed and dressed!!
Hi Sarah, no I'm not on those - my injections are to encourage my bone marrow to make more white blood cells to fight infection. I have them for 7 days each cycle, I think. I'm not sure why some are given them and some not - is it only Penn and me at the moment?
I'm afraid I don't know anything about dose dense chemo either! I'm sure someone on this site will know though - good luck!
Chezza I live on the Wirral just over the Mersey! I have to agree on the RED bit don't like either red sides!!! Although do wish our! manager well but not too well lol x
Katherine I saw the portable scan lorry thing when I was there on Friday.
Will you be on Sulby ward? I am in on Tues at 10.00 for chemo could meet for coffee if you are feeling up to it. Not nice having to stay in but as you say you will be in the best place.
Welcome Sarah to the madhouse I am sure we will hit 50 members soon, which is scary and sad. However maybe girls are joining cos we're such a good group instead of lurking as a watcher? Gill ( Venice) I am sorry you are feeling overwhelmed I think the limbo waiting to start chemo is the worst part, I had exactly 6 weeks from mx to 1st chemo and it was hard. I tried to get out and about, see friends and family, and make the most of feeling well. I went on a haven introduction day too which is a fab place, they will send you a dvd and info if you don't live near one. Annie I know how you feel, it's that strange vague just not right feeling, I wouldn't be up for days out either! Just need to be a bit all about me at this point methinks? Have a good weekend Gilly sounds lovely and as I said to begin with all about not dwelling on things and making the most of pre chemo days! Xx
Thanks for the lovely welcome. I read your post Annie62 and your comment about the district nurse coming to give you your injection. Are you on the dose dense every 2 week thing? If so would be very interested to hear how it is going with respect to SE. I am feeling a bit apprehensive as there does not seem to be much literature about dose dense chemo. Thanks Sarah
Toillebelle, Yes my Consultant is Mr E. Will let you know when next one is after the dreaded first one on Wednesday. Got my PICC line at 11 then Chemo at 1.30 so a double booking for me.
Hi Bakedwhenstressed, hopefully I'll bump into you & Toillebelle sometime in Clatterbridge.
hi feeling really really down today just realising what i have to face reading good news stories but am wondering will this be happening for me . So sorry to be so miserable not yet started chemo feeling very overwhelmed gill
FEC cycle 1 day 4
I'm still doing fairly well, not taking anti sickness but I'm very off my food and can't even face watching master chef which i love normally. Seem to have developed a gag reflex to steroid tablets so the last two got involuntarily and spectularly gobbed down the sink this morning. Oops.
as predicted by our Lone Ranger Chezza, I'm very tearful. Husband said last night "lets go out this weekend" and I nearly stabbed him with a teaspoon. I know he means well, love him, but I'm quite resentful of people who aren't going through this and can't possibly understand how hard it is. I feel like I'm at the bottom of a huge mountain looking up...
on the plus side SEs are manageable and I'm sleeping ok.
chez if you weren't Lone Ranger we could have nicked the line from the kitchen roll advert for you - Juan Sheet - strong like bull !!!
perfect for you with your Spanish link xxx
love to all xxx
Hi folks, I did post on here yesterday but think it got lost in the avalanche! Welcome to all new members, I'm losing track, Penn will have her work cut out updating that list every couple of days!
V. tired yesterday after no sleep the night after chemo but took half a sleeping pill last night and slept on and off. No sickness or nausea, just feeling a bit strange and not with it (not all that unusual for me though). Waiting for District Nurse to come and inject me now but think I'll do the rest myself - just hope I don't get a bad reaction like Penn.
Good morning Maisies! Didn't post yesterday as I had my PET scan, then developed a thumping headache afterwards due to lack of food (scan was at 12:45, no food for 6 hours before). Had to laugh, as Mum and I were wandering the corridors looking for the scanning department she pointed out the window to the portacabins for the building work and said I'd probably be in there. When they collected me for my scan - it was out the back in the mobile scanning unit, so it was actually done in a lorry, a step down from a portacabin I'd say!
Hello to those who are having treatment at Clatterbridge - me too. I'll be in all next week, maybe we could get together in the coffee bar?!
I agree, chezza is definitely the best at naming groups. It's me, Ruthy and Christine up on Monday I think - how about the three musketeers? Quite fancy dressing up in those costumes for the reunion!
Hope all those who had chemo recently are doing well without too many ses.