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November 2019 Chemo Starters

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Re: November 2019 Chemo Starters,

This  t cycle has left me tired quicker, even with the steroids, sleeping through the night has been hard too xx 

appetite and tastebuds rubbish again too xx 

 

 

Ah well not much longer lol x 

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Re: November 2019 Chemo Starters,

It's the blooming steroids I think!

 

I am still on them so feeling pumped..but know I will be in bed Weds. I am tapering mine more..will see if it works!

 

Got the larger pot of steroids for T...eight a day instead of three!

 

Sounds like the come down is hard, Debs? What has your energy cycle been this round ?

 

The once thing about having a break was how amazing it is that your body will bounce back from all this s***.

 

Loving the life drawing model story LisaπŸ˜‚..I am bad enough at recognising people without them being usually naked! My Mum used to do alot of life drawing, and there are quite a few naked framed pictures at their house...one of whom became my sister's baby group friend! My sister would have childrens parties at my Mum and Dads house...but her friend was just happy to see herself framed!

 

I wish I felt so chilled about my body being on display!

 

 

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Re: November 2019 Chemo Starters,

Afternoon ladies 

Another one wiped out today xx 

on the positive I have finally given birth xx 

all I’ve done today is loo and load & unload washer and tumble. Then it’s back to napping on the sofa . 

Hope everyone feels better tomorrow, can’t remember if it’s a anyone’s treatment day . 

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Re: November 2019 Chemo Starters,

Well after my steroid high friday I well and truly crashed yesterday andΕ• today , like you chris am wiped out , worst I have felt am guessing it's the cumulative effect of EC first time I have resorted to going back to bed during the day and I dont like it!!! 😴😫

Roll on next few days , is it just me or do we seem to live by our cycles lol and boy do I want to cry feeling so emotional right now  , I know we are pushing through but this is really poo πŸ’©, sorry ladies low day today 

XxxKC xxx 

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Re: November 2019 Chemo Starters,

Afternoon Ladies 

Well I don't know where Saturday went I slept most of the day, felt so drained could hardly lift my head off the settee. I was told by the nurse that I was slightly anaemic so ate liver yesterday, i know not everyone's cup of tea Smiley Frustrated

 

 Ah Debs hope you got all your pipes sorted, nothing worse something you could have done without Heart

 

Helen it sounds so interesting some of the things you have done, I said to the hubby yesterday that I think we need to come out of our comfort zones and do something different, life's to short and all that. 

 

Viv I am a bit OCD and with having a lot of birthdays in January and February I got all the cards in and presents so that if I felt crap I wouldn't be panicking Smiley Indifferent my hubby said I'm daft and shouldn't have flapped about it. 

 

KC glad you have finally given birth a weight off your mind Smiley Very Happy

 

Sorry if I've missed anyone chemo brain still kicking in

 

Hugs Heart

 

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Re: November 2019 Chemo Starters,

I used to do lots of life drawing Helen. One time I went to a Mother’s Day assembly at school where grandmas were also invited and I thought I recognised the lady sitting in front of me, but couldn’t work out where from... Took me a while to realise I’d just never seen her with clothes on before! πŸ˜‚

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Re: November 2019 Chemo Starters,

Yes ..you need to choose your ferments with care at they are an acquired taste...or just have some live yoghurt..apparently wine is a ferment so it's not all bad! 

I may now not give birth for a week...so am not overly optimistic that I am cured!

House flood sounds like a nightmare Debs...at least Chemo privilege means you don't have to shift anything and people are on standby to help! You can just knit wacky shocking pink garments in the background. People are asking for knitters to make things for Australian animal burn victims if you can't think of anyone you know who likes shocking pink. Also have you heard about knitted knockers.?

Yes...you have to be careful about buying weird stuff. I always get my youngest to do interesting things with me that are often a bit challenging...a few years ago when she was 15 my eldest recommended we go to a free life drawing class with clothed models. On our session it was a nude man with everything out! Then I got us tickets to an immersive experience when she was 14, a few weeks after my brother died, when you had to lie under a tree with headphones and listen to a audio about you being a corpse and the chemical processes of your body decomposing! A few months ago we went to an event where you had to feel weird substances given to you by a stranger, half of it was in the dark! So I am getting a bad reputation! And that's without Chemo impulsivity! I switch it up with nic3 things to keep her on her toes!

 

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Re: November 2019 Chemo Starters,

Yay Helen, well done you... I am very jealous...I have gone the other way now πŸ˜‚

'Ferments' doesn't sound very appetizing right now. Keep imagining pickled onions and feeling sick, πŸ˜‚

Congrats to everyone who has given birth....

Debs that is a rubbish day, hope nothing got ruined...that is not something you want to deal with. The pink wool looks like it def wants something made from it. Reckon some baby hats for some very cool babies...

I am avoiding shopping too but youngest's birthday on Tuesday so trying to buy something that is not inspired by chemo fog...

I haven't tried out my orange curtains yet.....

Xx

 

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Re: November 2019 Chemo Starters,

Helen I am jealous lol

 

well my restful day didn’t go to plan x 

A pipe broke off the hot water tap giving us our very own indoor pool xx

Em Dan and Harry to the rescue. They moved washer tumble dryer cooker and fridge freezer to clean underneath xx   

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Re: November 2019 Chemo Starters,

Chemo shopping is dangerous!

I am skint after Christmas so am fairly safe atm! 

After feeling sick and anxious last night, I feel OK todayπŸŽ‰.. I think the steroids they pump into you before the E don't agree with me!

Don't mean to boast, but I have just given birth on day 1 WTF!! Took 4 and 6 days in round 1 and 2. What did I do differently, as I am as shocked as the rest of you! My partner who is a health freak made me eat lots of home made ferments on chemo day which I grumbled about. So I can't tell him it may have helped as he will be insufferable. Otherwise I have been taking your advice and takin it easy! After lying in bed watching TV, working out the mystery of who bought the family plot in 1897 so my uncle can be interred (apparently you need the consent  the nearest blood relative) and having tea. I managed to do a dog walk as well so a day well spent ❀️❀️

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Re: November 2019 Chemo Starters,

Yaaay KC congratulations on your safe delivery lol 

 

i spend way may time looking at stuff I need, knitting patterns and wool are my downfall. My excuse is I will at some point use it, so not actually a wastelol

However I did manage to buy a  shade of neon pink which arrived yesterday! That was definitely a chemo fug purchase what the heck am I going to knit with that. . DE146815-343C-4454-A5D0-D8DBBC594CDC.jpeg far brighter and orangey pink in true light x 

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Re: November 2019 Chemo Starters,

I'm with you Debknits lazy day for me , I did the ironing ( on steroids yesterday) whilst I felt up to it and popped out for a tasteless tea with family , However I have given birth !!!! Yeahhhhh god bless that medicine but downside is I cant go far today need to be near a loo lol , just cant get the happy medium . 

 

So I'm currently flicking through shopping channels ( how bad is that ) trying to convince myself we do not need  vionic boots , power air cooker , and a cruise !!! Well ok maybe a cruise when all this is over lol 

Have a good day everyone πŸ’•KC xxx 

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Re: November 2019 Chemo Starters,

Morning 

I have Denusomab injection every 4 weeks xx 

 

Still waiting very patiently to give birth lol xx porridge with berries for breakfast x jacket with beans for tea. Prunes and liquorice eaten xx 

just worried I’ll open the flood gates when I get going 

 

oh the joys!! 
Any way the plan since I’ve been awake since half 1 already is to have a pj day no intention of moving far xx 

happy day fellow fighters xx 

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Re: November 2019 Chemo Starters,

Morning Helen, 

Hope you are feeling a bit more perky today...😊.

I usually get aching arms, think it was just because it was so localised in one spot, feeling bruised as oppposed to aching and came on so quickly. I too get aching ribs and back for a couple of days but think that may be due to the fibro thingy jab I get to boost my bone marrow. Think the jab also makes me go 'weak' for a couple of days too...Anyone else get jabs?

The sun is shining but it is blowing a hooly, will try an venture out for a walk today holding hubby's hand ( he will love that as apparently I don't hold his hand enough).

Hope everyone else is good today and Happy Weekend πŸ’•

Xx

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Re: November 2019 Chemo Starters,

Hi Viv

Not sure if the same, but I always have tenderness/soreness in week 2. Tends to be my ribs the most, but also in leg and arms... Not sure if it is a muscle thing or a bone thing. Is it just your arm or elsewhere as well.

I do also get a sore vein in my trunk so it could be your veins... But it usually improves by week 3❀️ Shi's heat pad idea is good. I also use CBD.. Totally legal, you can get it from Holland and Barrett. It takes the edge off anxiety and I find it helps with discomfort.

 

I am feeling nauseous tonight...🀒... Sounds like we are all feeling a bit rough. I came home and ate too much lasagne that my daughter had made... Just drinking ginger tea

I am disappointed for you Debs that the toilet is still a distant dream... Hope things get going. ❀️

 

Let's hope things are looking up for us all tomorrow πŸ€ͺ

 

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Re: November 2019 Chemo Starters,

Thanks Shi, will keep an eye on it.. unfortunately no one working at the weekend so will ring hotline for advice if if gets worse and swells up. Am going to take paracetamol and see if that helps.

Hope you have a good Friday πŸ’•

Xx

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Re: November 2019 Chemo Starters,

Vivmac, please keep eye out for your hand and fingers swelling ❀️ I used heat pad and ibuprofen gel on sore arm, but checked with my team before I used the gel. But that was me, I checked with team on everything and made sure doing everything correct ❀️ Don’t be hard on yourself when you have wobble day πŸ’ͺπŸ’ͺπŸ’ͺremember weebles wobble but they don’t fall over 😁 Nov thread you are fantastic and fabulous β€οΈβ€οΈπŸ’•πŸ’•βœ¨βœ¨shi xx

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Re: November 2019 Chemo Starters,

Thanks Shi. I did put hot bag on it earlier and it helped. It's been really tender and painful since last night but hasn't got worse and no swelling. It's very localised. Will see how it is tomorrow... my other arm was sore for about 2 weeks after chemo and felt like sore muscles. It eventually went away. If this gets worse i will def call in. 

Xx

 

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Re: November 2019 Chemo Starters,

Vivmac sending πŸ‘­ try heat pad on your arm one of those microwave ones helped. If still sore phone rapid response just to make sure no blood clots. It’s like tap dancing on a tight rope sometimes getting through chemo but keep tapping, you are all doing fantastic even if you don’t think you are ❀️And most important you are keeping each other πŸ˜πŸ‘­β€οΈπŸ˜ as you tap through together. πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: November 2019 Chemo Starters,

Evening ladies,

Think I am actually falling apart today, not sure why it's me hard this time. Day 7 and still Nausea, bowels, woozy, sore back, and for some reason my upper arm feels like someone has punched it, almost like its bruised. Hoping it's not my veins finally saying goodbye. Just had major breakdown, crying but feel a bit better now.

I need to get out of the house but have just felt too crap.

Sorry about your collander arm Helen but hope all goes ok tomorrow and yes really lay of the classes till chemo is done and you don't need picc line anymore. You can join us walking people, ha ha.

My nausea also bad this time Chris, maybe our insides finally had enough...

Debs I can highly recommend a dedicated poo line, ha ha. Hope all your remedies kick in soon!! I think I may have drunk too much prune juice yesterday.

KC, I already forgot everyone' s threads so sending you a hug for any ailment you have....

Love and hugs xx

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Re: November 2019 Chemo Starters,

 

 

Re steroids chemo brain was working overtime. You’ll be pleased that’s it only for 3 days after the initial big dose. 

Sorry for the panic. 

 

Very tired today and was awake at 2 am. Heartburn or steroids who knows. 

Prunes, liquorice are needed as I’d laid off them after reading T could give the opposite reaction. So I’m three days waiting for something to happen. Apart from looking at and ordering a new car, we’ve stayed close to home  just in case T, prunes & liquorice all decide to work their magic at the same time lol 

lots of rumbling and gurgling going on. Maybe I need a dedicated loo phonecall. 

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Re: November 2019 Chemo Starters,

Hi KC and Chris

I had alot of bowel issues last time.. Thought it was the Senna and 6 days not visiting loo!

Amazing how we miss our bowels when they grind to a halt. When I feel better, I try to eat alot of ferments such as pickles, veg and have opti bac to repopulate my gut. I am guessing the Chemo basically kills your microbiome...

Sorry to hear about nausea Chris.. So **bleep**ty... I was given some gin gin sweets, which are a bit too sweet and some ginger sugar free chewing gum.

 Xxxx

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Re: November 2019 Chemo Starters,

Yes, I’m also having Cyclophosphamide(Cytoxan). Still a little itchy today, but the rash is gone!

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Re: November 2019 Chemo Starters,

Hi Chris 

I'm more tired this time , think it's the cumulative effects probably and I know it doesn't help but crumbly guts mean movement to me , I'm 4th day not going at all so stepping up the anti constipation stuff tbey gave me , I dont feel particularly  bloated so dont know where on earth the food is going though I guess I'm not eating much to be fair . 

 

And yes the gift that keeps on giving !!! Fingers crossed 🀞those pesky glands stay down for you , I note back in the forum some girls thought ginger biscuits nibbled helped with nausea that might be worth a try ? 

πŸ’• KC xxxx 

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Re: November 2019 Chemo Starters,

Morning All

Feel well and truly wiped out this time, but no swollen glands up to now so there is a god, fingers crossed not jumping the gun. πŸ˜‹

 

Has anyone had a dodgey stomach the nausea really bad this time which I didn't have with the first 2 FEC and the wind terrible you would think there was a wirlwind in my stomachπŸ™

 

God this chemo is a gift it just keeps giving all these lovely side effects ☹️

 

Hope me everyone has as good as a day they can 

 

sending hugs πŸ’•πŸ’•

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Re: November 2019 Chemo Starters,

Hi All

 

Finally got my line back in...took four insertions in different places, so have an arm like a colander!. Luckily the regional PICC trainer was there and she eventually got it in....cursing my veins as she went! I think the general consensus is that if this one fails I will just get it in my hand...As it is more traumatic for everyone trying to get it in, and getting a Hickman will cause further delay. Am quite looking forward to getting on with the chemo tomorrow now...the last fecking FEC!

I have been banned from doing exercise classes and yoga by my partner, friends and family in the hope that this PICC will last..managed to get 5 classes in this week before going cold turkey....

 

It sounds like we are all feeling apprehensive about the T...I am hoping that means it won't be as bad as we are all imagining!

Hope you are still OK Debs..

The steroids for T sound strong which I am worried about the comedown being worse but I am genuinely looking forward to having diarrhoea! Perhaps I need to dig out some big, sturdy pants!

 

Keep going guys β€πŸ€—

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Re: November 2019 Chemo Starters,

Hi Amyhey,

Are you having Docetaxel on it's own or in combo with something else?

Xx

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Re: November 2019 Chemo Starters,

Hi ladies,

 Not sure I have recovered yet from giving birth again, πŸ˜‚πŸ˜‚

I had bad downer from steroids today day 7, lay on the sofa most of the day wiped!! I keep thinking it will get easier the 1st week...πŸ™ƒ

Yay Lisa on half way πŸ˜€

And yes Flou and KC, def a bit apprehensive to change in meds but knowing all of us are doing roughly same time just gives me that bit of reassurance.

Flou, I did hear that diarrhoea is one of the side effects of our combo...my insides will not sure what to do with themselves by then , ha ha

Hope you got some sleep insomniacs and that you are doing OK Debs.

Helen, were you not getting your line in?

Xxx

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Re: November 2019 Chemo Starters,

Hi Flou, I had my third round of Docetaxel yesterday and broke out in a horrible rash all over my body this morning. It was a reaction my doctor said. I took Benadryl and it mostly went away. Good luck!

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Re: November 2019 Chemo Starters,

Hi Flou your not alone I'm pretty nervous about the change to ! So will be keen to know how everyone gets on forewarned is forearmed and all that , strange about the rash but chemo never fails to surprise!!! 

πŸ’•KC xxx 

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Re: November 2019 Chemo Starters,

Hi Viv,

 

I’m in for 5 hours next Thursday for my first docetaxel & herceptin with gaps in between to check for any allergic reaction. I’ve steroids to take the day before too. I’m a little nervous of the change in meds and have been advised that fatigue and diarrhoea are the main side effects but they do give things to help.

Ive been more tired this week days 7&8 and got a rash on my chest which the oncologist didn’t seem to know what to do about, my acupuncturist thought it may be viral or hormonal but I thought it might be a reaction to the E.

hey ho, never a boring day! 
xxx

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Re: November 2019 Chemo Starters,

Just re read my reply below  

Platelets arent white cells but are produced in the  bone marrow along with white cells and red cells  sorry what I wrote was misleading 

KC xxx 

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Re: November 2019 Chemo Starters,

Hi Lisa 

I'm ok ish bit jittery and tired not sleeping , the usual really ,am struggling with bowels like most again !!! But hey ho .

They normally write down in my book my HB which are red blood cells  white cell count in total , platelets and neutrophils ( also part of white cells) these are all produced in the bone marrow which can be suppressed by chemo , low HB makes us tired and breathless, low white cell count and low neutrophils make us susceptible to infection and platelets help us with clotting , the effects from chemo are temporary but that's why they check each time to make sure it's safe to give so yours must have been ok 😊

The full range gives more of a picture as to what is happening 

πŸ’•KC xxx

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Re: November 2019 Chemo Starters,

How are you feeling KC and Chris?

KC thank you for the info about paclitaxel; I’ll look up about the vit B12.

 

And Debs, how are you now? Hope you are feeling ok.

 

Viv, I really laughed at your poop story πŸ˜‚ though sorry you found yourself having to birth again!

 

My last EC today - yay! Just need to get through the next week or so and I’ll be celebrating reaching the halfway mark.

 

I also asked about my blood test and results were platelet count 126. However, I have no idea what that actually means πŸ˜‚

It was obviously good enough for chemo to go ahead.

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Re: November 2019 Chemo Starters,

Chris, that was the same as me before the first cycle yesterday of T,  just 3 days of steroids, but they gave me extras to take home. 8 days starting tomorrow, and  3 days for next cycle. Plus new anti nausea pills. Was given domperidone but have ondansetron now. 

Also have been taken off the nivestim injections. 

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Re: November 2019 Chemo Starters,

KC, hope you manage a nap later. 

I’ve made a cup of tea ( before tastebuds go walkies), eaten a biscuit- taken my first 4 steroids, written out my new meds rota, how when etc, checked emails, done online banking,  my knitting will be next. Knit up to the armholes on the back of a baby jacket yesterday so early waking isn’t too bad for me lol.

Ironing is not about to be done lol 

Take care and rest when you need to . Xx 

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Re: November 2019 Chemo Starters,

Hi Debknits 

Also awake , wide awake !! Never sure if it's best just to lie awake or read news , Instagram  twitter etc. But my mind does so.mersaults unless I "do" something in the early hours when awake , I suppose I could get up and iron!!! But maybe that's a step too far πŸ˜‚

From fellow night owl πŸ¦‰ KC xxx 

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Re: November 2019 Chemo Starters,

Heartburn and nausea made their return last night xx 

I make  sure my last steroids are no later than 2 pm xx hopefully doesn’t make sleeping any harder than it already is lol xx 

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Re: November 2019 Chemo Starters,

I have only been given days before I have T day of chemo then day after when I left yesterday xx

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Re: November 2019 Chemo Starters,

Wow, 8 days? That is loads, not looking forward to thar Insomnia!!!

 

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Re: November 2019 Chemo Starters,

Steroids - 4 dexamethazone twice a day for yesterday. Today and tomorrow then 2 a day for next8 days 

 

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Re: November 2019 Chemo Starters,

I tried prune juice today, it was disgusting....πŸ˜‚

That is the last time I answer the phone in the bathroom. Today I drank so much water I nearly peed myself. I am def going downhill...

I have been given steroids to take the day before my T but also having Herceptin day before too....

Xx

 

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Re: November 2019 Chemo Starters,

Glad you are OK so far Debs..were you given steroids before the T?

 

I heard the bump you up more with steroids,

 

Thanks for all the giving birth advice guys...I wish liquorice and prunes and water worked for me, though I will continue with them anyway. Not sure if getting my oncologist to ring me on the toilet will work either πŸ˜‚..I just don't think she would be up for it!! It amazing how it can become such an obsessive issue....I think you need to write the Memoirs of a Chemo patient Viv!

 

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Re: November 2019 Chemo Starters,

Hope you get a good night's sleep.

Keep well

Xx

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Re: November 2019 Chemo Starters,

I was so worried about the T mainly due to being scared stupid by the possibility  of anaphylactic shock. 

Absolutely nothing thank god,  it was felt quicker than the FEC I suppose because there was no one feeding the individual cocktails.

 

so far just very tired- keep muddling  my words   Eg worst case scenario I said worst canaries lol. Fingers and brain seem to have separated when it comes to messaging too.

will let you know how I. Feeling tomorrow 

 

D xx 

 

 

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Re: November 2019 Chemo Starters,

Hi VivMac 

That made me chuckle , first round I was 6 days before I gave birth !!! So I know how you felt lol and it reminded me today that its already 2 days so i have resorted to medication , I was given something called Strigol its sachets and tastes like soap which is probably what it is !  ( mixed with water ) I note the emergency protocol for impaction was 8 sachets in a litre of water over 6 hours , I so very nearly resorted to that last time. I understand with the next regimen of taxol derivatives it's the other way round we may not be off the loo lol oh the Joy's of chemo side effects bingo !!! 

Xx KC xx 

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Re: November 2019 Chemo Starters,

In the chair, kept a thermal glove on all morning and cannula went in a treat xx 

anti sickness going through now. Then the T part xx 

will let you know what what’s later xx 

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Re: November 2019 Chemo Starters,

Thinking of you Debs πŸ’•. So glad you got the vein

Xx

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Re: November 2019 Chemo Starters,

In the chair, kept a thermal glove on all morning and cannula went in a treat xx 

anti sickness going through now. Then the T part xx 

will let you know what what’s later xx 

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Re: November 2019 Chemo Starters,

Morning Ladies

 

welome cheeky glad you joined our little forum we are all very friendly and here to offer advice or help we canπŸ™‚

 

Viv you do make me laugh with your posts πŸ˜‚πŸ˜‚πŸ˜‚

 

sounds like everyone doing okπŸ’•

 

Saw my oncolgist on Monday to see if she would lower the dose any more after the way I've been feeling, but she said she couldn't so keeping my fingers crossed not as bad with this one like I was the first 2.

 

KC went ok yesterday, however I had problem with finding a vein, hot water then try to find a new vein, it really hurt when she put it in My hand all bruised today. 

 

so that's my last FEC so on to the taxadol will see how that goes. Viv wasn't sure if it was you or Debs having it soon, you can be our testersπŸ‘πŸ‘

 

Sending hug ladies πŸ’•πŸ’•