Yes KC, think there was some issue as I didn't get notifications either. Was just by chance that noticed there was messages last week.
Good to hear from you guys 😊.
Glad you're being fed do well Debs..💕 and that your Steve is looking after you...
Hubby still ill, finally going to docs tomorrow..
I def don't have mad heart stuff with the h/p/t but my bowels are playing havoc. Drinking as much water as I can so don't end up having to go in for any meds in hospital.
I have managed to get up and about more today but stomach pains etc are not being kind. Rice for tea tonight!!!😅
Nice to get a phone call KC, especially if you have been feeling down and weepy. It's the little things that make the difference
I got a parcel 2 days ago from a pal I went to Uni with 30 yrs ago. We keep in touch but haven't seen her for about 4 years. She wrote me a lovely card, sent goodies, tea, creams etc and it made me cry...
Lots of hugs xx
I asked to be prescribed pyridoxine 50mg 3 x daily for hand foot syndrome it's a B vit studies have been done on slightly higher doses and jury is out , you can find some research on line. I'm paranoid as neuropathy can become permanent so let them know I have neighbour who now cant get credit card out of her purse and a colleague who cant drive !!! Get in touch with your team Helen I would . I've had to pac and no neuropathy xxx KC xxx
Looks like I havent been getting my notifications of messages, thought everyone was quiet lol , have missed you all !!! 🤗 shows how much I need this xxx KC xxx
I guess we are head down walking in the storm, doing our best to move forward , I had 2nd pac yesterday and added bonus no steroids for afterwards only iv dose
Last week was tough but guess that's the carboplatin , very weepy very very tired slept day and night and out the blue outpatient nurse rang me and was really helpful lots of advice and meds offered though declined ( sleeping pills)
Def on the up today so hoping the pac isnt too bad .
Love to all my fellow warriors, chin up keeping trudging and wear your pants on the outside , superwomen 🦸♀️
Love xxx KC xxx
I use a baby toothbrush and children’s toothpaste when my mouth is sorest.
Feeling brighter this afternoon.
Long may it last lol
Steve is gem, he went out yesterday and brought back ice lollies and spaghetti bolognese “in case you fancy it.”
today he went to the local cafe and they cooked me a bacon sandwich while he waited, couldn’t really taste it but did eat most of it.
He also came back with a microwaveable chicken burger just because it mentioned peppery on it and he thought it might stimulate my taste buds & liquorice allsorts to help with you know what lol.
He says its payback for me when I cared for him after his stroke, 18 months ago, He still has limitations but honestly he has been a rock.
No love it’s simply called love. We look after each other no matter what. !
sorry it’s not the right way up xx my effort this morning. It definitely worked as a distraction- Steve says I’ve got more colour (excuse the pun) and I feel more awake now than in the past two days xx
Just dropping it to say still here, but not had a few good days, really achy bones, back really sore and mouth thrush, o the joys of chemo
I think I will join your colouring group as my step daughter bought me a few books and pencils a few months ago, but has just been stuck in the draw and I have joined the crochet group, just simple a blanket for my dog and a one for a friends cat. Well we all have to start somewhere lol
Lisa hope it goes ok today and hopes its not to bad
Deb hope your feeling better and not as weepy, your hubby sounds like a gem x
Viv I take cod liver oil and a load of other vitamins to boot, don't know if they have helped, but feel as though I should be rattling x
Helen think I prefer the T to the FEC, not as bad as I was on that x
KC hope your ok x
Sorry if I have missed anyone, but sending hugs
Stay strong everyone xx
How did you get on with your 2nd Paclitaxel yesterday? Hope you had a few good days before going through it again.
Sending hugs xx
Good luck with Pacl 2 today Lisa, hope all goes well 😊
Sorry your having crash day Debs...😔. Glad you got meds sorted though.
I am determined to do some fantastic colouring now...maybe will soothe me, ha ha
Really going to force myself to go for a walk today, even if it's to the end if the road, before evil storm C comes and gets us this weekend!!
Steroids finished yesterday so see if there is any difference today...
Huge hugs Debs xx
I really hope the prescriptions help and that today is a better day.
When is your next round and how many more do you have to go?
Hope your steak pie behaved last night Viv. We all really DO want to see the colouring!
I’m off for second Paclitaxel today.
Hope everyone else is doing ok xx
Sorry you’re feeling crummy Viv
today was definitely a crash day plus I’ve been very weepy.
Dr prescribed Nystatin and Fluconazole for me without seeing me.
Went back to bed at half 7 x
Hope everyone has a better day today xx
I am def going to check out the cod liver oil, omega 3 capsules. I thought my fingers felt a bit tingly but not sure if I am just being paranoid...🙃
I am very excited as managed to make tea and sit with family for a couple of hours so that boosted my brain a bit. Back in bed now to recover 😅 as walking is def still an effort..
My bottom half is still very sore owing to several toilet visits and hoping my steak pie for tea will not punish me overnight...
You do not want to see my colouring Helen, I am truly dreadful and it has already been criticised by my husband for terrible colour choice....
My fingers are def drying up but washing them 100 times a day doesn't help...
What toothbrushes are you guys using? Trying to find a baby one maybe as my gums are sore.
Did you get to doctors Debs?
I can’t remember if this has already been mentioned, but onc told me omega 3 for peripheral neuropathy - he said to take 3 cod liver oil capsules per day(I.e. 3 x recommended dose).
Of course you might get other side effects from 3 x cod liver oil per day (like all the local cats chasing you round the block 🙄 🐟🐟🐟)
I didn't make it to knitting- my friend had a virus, and I didn't feel like facing newish people whilst feeling a bit weird! So I flaked..... but at least I can practice a bit before next Tuesday....I blooming well need it. I will promise to post, when I finally finish something!
Loving imagining you all colouring...look what we have been reduced to...haha....I was so bad at colouring as a child, I don't find it very relaxing! Can we have some pictures, guys?
I am still preferring T to FEC... I am feeling tired, have no taste buds and having some muscle aches. But better than feeling really alien with a racing heart on FEC.
The only thing that has started to happen today is that I am getting numb fingertips...I know this is a thing on T, but it is a bit freaky.
I have decided that I need to move my fingers a lot and exercise to increase blood flow (which doesn't even make sense as it is a nerve issue)...probably wont make any difference!! But at least it wont do any harm. Any advice for numbness would be appreciated XXXX
Oh no, Debs that's rubbish. I just have really sore neck/throat and jaw, feeling very dizzy this morning. Will also try and venture to sofa for a nap, ha ha.
Think I preferred the EC zonked nausea than this, def!! At least I was more mobile with that...
Can't complain though, at least I have someone at home looking after me and the house, kids etc.. My heart goes out to all the people dealing with this crap on their own..😔
Think he was more concerned than anything xx
tastebuds started to go yesterday today I’ve got full blown thrush again xx trying to get in at Drs fur nystatin etc xx
I got a mindful colouring book about beating cancer xx must get it out xx
Today I’ve got up and gone straight to the sofa. Already had a nap lol xx
next chemo is 20th xx
successful babies though lol xx 💩💩
Colouring is good Viv! I don’t know about you, but I get very bored on the crash days as I don’t have the energy to do much physically or mentally but I hate just sitting or lying with nothing to do. I think I could manage some colouring too then 😊
How was the knitting group Helen?
My gran taught me to knit at a young age and I remember loving it (along with teaching me to crochet - she had crocheted everything in her house!), but I’ve forgotten how to now. Another good thing to ease the boredom; maybe we need an online knitting club!
Sweet jackets Debs x
Oh no, that's rubbish Debs. I still have taste buds but not much else... was he impressed with your nap halfway through? I cooked tea a few times at the weekend but then got hot flushes whilst eating and had to go lie down...
Have you lost your taste buds for the whole time?? When are you due your next cycle?
Steve had cooked roast chicken dinner, it smelt fab but I couldn’t taste any if it xx every thing had the same texture, couldn’t tell whether it was roast parsnips or chicken . Had to leave it and have a nap half way through xx
I did some colouring in today, does that count?
And I 'm sorry if I repeated myself in my last message, guess my last remaining brain cell might go soon...
Good to hear you are fairing well...😊.
Still on steroids till tomorrow Helen but have been pretty much bed bound since yesterday 😔. Weak and fuzzy and achy still. Even itching my nose is an effort...Was looking up side effects of Herceptin and Pertuzumab and and they seem to be just as bad as docetaxel to start off with. I am assuming triple wammy of drugs has probably just done me in... hoping will improve over next few days. I am trying to get up and do bits but would love to be able to go for a walk.
You will have knitted a whole collection by the time you finish chemo Debs..🙂
And you better show us some of your artistry Helen..😅
Hope your heart rate behaves itself Helen.
Nausea, nosebleeds, heartburn and constipation are my main issues today.
Knit a baby jacket yesterday, (not the ones pictured they were from the weekend) but I’m not happy with it, still I expect it will still sell. I’m a bit of a perfectionist when it comes to my designing. Lol these two are my designs, but not ready to type up the pattern yet, still want to test another size first,
hope you have lots of and the knitting club. Look forward to your projects, don’t forget I’m here if you get stuck.
Not as manic on steroids now hence less posting 😂
Well done for dancing Lisa... It is the best medicine!!
Getting some pains but manageable, and tired but still not as trippy as FEC, so I am preferring it. Also I now realise my heart was doing really weird stuff on FEC which isn't happening this time.
I feel I am tempting fate and will end up in A and E.
I have definitely had my babies coming very suddenly this time so nice not to feel bloated... Just had some near scrapes... Once on phone to my brothers friend (my brother died 3 years ago but his friends still see my Dad every week!). I hope he didn't hear the clatter of me running to the toilet😂
Liz O Riordan was great... She is v pro exercise. She said she had to give up being a surgeon because of neuropathy/long term physical problems, which must have been heart breaking. But she has really turned the negatives into positives and readapted her life.
I am going to a knitting group tonight... I will be the dunce as I know some of the people there are fantastic.... Also finding it challenging to learn with one brain cell!
Obviously feeling inspired by Debs ❤️
Def impressed by your dancing 💃💃 and glad you got out out..def good for your soul 😊
I am floored today, Day 4. No energy, no shower 😷, not left my bed...
On the plus side I have caught up with some netflix, it's a sunny day and I have a beautiful view from my bedroom window...
And only 3 more sessions of this particular cocktail to go..
I am lying on an icepack to relieve my piles at the moment 🥶 no running to toilet yet..
I forgot to ask you about Liz O'Riordan, Helen. I bought her book a couple of months ago but haven't actually read it yet. I know she's a real advocate of exercise but not sure it would actually have been safe for me to walk anywhere today..😅😅
Hope everyone else good
Good tip about the lip balm up the nose Debs (things I would never have thought I’d say were a good tip lol 😂), I’ll definitely try that.
Viv, my next Paclitaxel is on Thursday and aside from all the things I moaned about earlier I actually feel quite ok at the moment x
Hi Helen, 8 mins running is impressive to me! Well done on starting the couch to 5k 🏃♀️ (sorry, no bald lady runner emoji available 😂)
Hope you are feeling better KC. My worst days on pac were 3 and 4. After that I’ve gradually felt better and have found it a bit easier than EC I think. I’m on 2-weekly so I think my dose is probably a bit higher but more time to recover.
Hope everyone else doing ok despite it sounds like everyone is lacking in energy today.
I actually went out last night and I mean out out. I went to a local band’s gig (raising money for a local cancer support charity). It was good fun and I got up and danced to quite a few numbers. I felt it when I woke several times in the night with back and hip pain, but it was worth it just to feel a bit normal and like I can still join the party 😊
Ha ha, Lisa, love the chemo face lift. Made me chuckle!! Who needs fillers eh?
Yes, have been keeping my nails short, can't believe how much they keep growing 🤷♀️
When is your next treatment?
Lisa, I’m getting the peeling skin especially around my fingertips, which is such a nuisance when knitting as they keep snagging the wool, also have the nosebleeds daily. The inside of my nose is so dry, I’ve taken to rubbing a natural lip balm inside the nostril, this has definitely helped me.
My nails have gone from normal pink to kind of white-ish. The chemo nurse and onc both said to keep them very short, to prevent them catching on something and coming right off.
My skin has been extremely dry to the point of tiny scabs appearing (and bleeding if knocked) so I’m going through tons of moisturiser all over my body; the hospital have been giving out Pliazon moisturiser so I’ve been using that with some success.
The other issue I’ve had is the inside of my nose bleeding constantly, which is no fun.
My face has gone red and a bit puffy after every treatment. I had assumed it was the steroids. Ironically, during this period people comment on how well I look... The puffiness fills out my wrinkles and gives me a slight face-lift, so I also look 5 years younger 😂
Of course will send you one, just pm me...no payment necessary. From one chemo warrior to another 🙂
Glad you are feeling better Debs 🙂 and congrats on giving birth...
I am attempting roast chicken dinner to make me feel I have accomplished something today
(Apart from smelling nice). Although I am cheating with frozen roasters and veg!!!
Hope your resting and relaxing 😊 if you do get 2 polybalms could I pay you for one & the postage?
Have a little more energy than yesterday, have managed a bath, and run the hoover round the front.
Mouth furring up again, but I kept some of the nystatin back from last infection, so I’ve had some just to keep it at bay.
Have finally sewn some buttons on two cardigans, but other than knitting I’ve not really done much today.
have managed a little childbirth this time around. Yaaay.
Hope everyone manages lots of rest and we all have some get up and go tomorrow.
Anybody got treatment this week
Yes I am clean and fresh and managed it to the sofa. I keep walking round the house for short wanders to keep me going but feel like I don't have much strength in my poor wee body...well not so wee but I like to dream...
I am going to order polybalm too so can get extra bottle for someone...
In stead of smelly cat, I have had smelly dog not leaving my side today..
Yes agree to planning a few nice things the week before next chemo, def keeps me going. I have blown a few plans at short notice but do warn people this might happen.
Hear there was another terror stabbing and man shot round the corner from eldest's childs house in London so am going to investigate that right now...
Hope everyone having good Sunday...
Thanks for mentioning face symptoms...I won't panic if I look a bit blotchy as long as my temp stays down.
Am lying in bed today...reading and feeling tired but relaxed. Realised I accidentally only took 2 steroids yesterday instead of 4 so am now confused about how to taper...cotton wool brain alert! May just Do 2 a day til they have gone xxx
I have ordered some polybalm..thanks for the tip Denim.
I get two bottles so am happy to send one out to one of you lovely women, if you pm me your address...would you like one Debs, as you look like you and your nails need some tlc?
I don't know how you weekly guys are managing...no choice I suppose. The cocktails you are being given must mean you can't separate out the different side effects. I really find that planning to do a few nice things when i know i will be OK makes all the difference to me mentally as I get discouraged if I stay at home too much . But am blowing people out quite a bit too if I change my mind. But today I am lounging in bed with my smelly, hairy cat and a good book. Not made it to the shower yet , so you are doing better than me Viv!!
I am wiped today, barely managing to get out of bed...😔🙄...am going to force myself into the shower so at least I won't be smelly aswell as immobile, 😅...
Glad you got some sleep. I have steroids x2 for next 3 days so maybe will help with flushed face...
Hope everyone else is doing good
Hope everyone ok.
Finally managed to sleep last night, well most of the night
Viv my face has been flushed for the last 3 days, but it has settled down now. No steroids left so will see how I go through the day. I had reduced mine as I thought 8 was excessive. just done 4 first day after treatment then 2 following days and seem to be ok with it.
Debs hope you feeling a little bit better, I love your knitting, I can knit, but nothing like what you produce you should open a knitting shop, I think when you see babies in knitted stuff its so nice.
About your nails Deb I was told to use this nail varnish as it has silicuim in to protect my nails. I had to order it from France via e-bay, but it did'nt take to long to come. It was around £16 and have used it since the start of my treatment, so don't know if you might want to give it a look.
I had the docetaxel on Thursday and went onto reduced steroids today. Heard rash and slight swelling and tight skin might be normal side effect. Don't have a temp or anything. Will see how I go as it's the weekend and limited oncology at hospital...
Will keep an eye on it and if it gets worse will call in
Ha ha, not sure where I got America from Denim!!
I think D/H/P is standard but maybe depends on size of BC and stage? Did he change it after your shrinkage?
I am feeling quite flushed and tired tonight but def different to EC.
After my steroid high the last 3 days I feel like the drop down to 2 instead of 8 a day must have an affect. Have hardly spoken today, finding it hard...ha ha
Thanks Helen! I agree with the mentally peculiar feeling on EC - I described it as feeling alien! It was such a great feeling to feel mentally ‘normal’ from around day 10!! Very best of luck with the running 🌟🥇
VivMc, My onc seems to think that weekly Pac is better tolerated than Doc - I hope he’s right! Maybe it’s something to do with the H/P cocktail with it? Although I haven’t asked why he originally put me on the Doc option. I see him on Wednesday so will ask then. Btw, I’m in Warwickshire!
I hope you feel better soon KC57, and that this is only during the first week and your body get used to the drugs 🤞🏻
My first Pac with H/P is next Friday...
Helen you are an inspiration, my energy levels are zero.
steroids my @rse, no energy, no desire lol
Back to being constipated, oh the joys..
have slept most most of today away, hopefully will have more get up and go tomorrow.
Enjoy Chicago xx
Good to hear from you Denim. You live in the States, am I right? Glad you have survived the EC and ready for the next step. Thanks for nail advice, will check it out. If you don't mind me askingcwhy have you changed from Doce to Pacl?
I'm with you KC, 2 days after D/H/P and feeling a lot more wiped today.. think H/P added to Doce probably don't help..
Really hope you get a few good days KC and that as your system gets used to new drugs it will adjust better to them... sending you lots of positive thoughts..💕
Impressed with your running Helen, was chuffed with my 20 min walk yesterday, ha ha.
Long may your energy last 🙂.
Hi Helen first carbo and pac 3 days ago not doing great tired but not sleeping , no appetite, no taste , no diarrhoea infact the opposite again !!!! Totally out of kilter hope I shake it as next pacliataxel is Wednesday , I dont want this cycle for 9 weeks ughhhhh , sorry ladies down day today xxx KC xxx