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May chemo starters 2018

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Re: May chemo starters 2018

Linda Corrine - we’ll sone for being at work. I woke up this morning e pecking achy muscles - 😊happy to say I’m ok😊. I’m bathing with Epsom salts and my favourite Neals yard each morning - think it helps. Xx
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Re: May chemo starters 2018

@Jempd I am at work today as feel ok! Yes i heard that too re T and hair but seen people who have lost it on T. I think its thinned since last FEC. couldnt sleep much last night but just feel like waiting for muscle pain to start although am taking patacetomol to pre empt it as better than treating it apparently after the event. Not been to the toilet yet today so taking laxatives still.
Hope hets67 you feel better soon.xx
Shi Community Champion
Community Champion

Re: May chemo starters 2018

Hets you keep 💪💪💪Darley by like you are, discuss a reduced dose with your onc, I went to 80%dose for 2-6 because Chemo 1 floored me, my view was well i’ll Try anything and you sound the same as me 😁Jem, hets is getting the cocktails from the gally and will be maceranering back down the plane isle when she’s out 🤞🤞🤞tomorrow 😁😁😁💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Keep going girls 😘😘💕💕✨✨shi xx
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Re: May chemo starters 2018

Tracey MAC - how the temp today? Back to normal I’m hoping- it’s difficult in the heat.
Herts - so sorry you’re back on AB😖, hope this morning finds you feeling a little better. When are you having brain scan? All this on top of chemo 😖. But you have always been positive and hopefully home on Saturday- are you watching the match? We are all here cheering you on and giving you big virtual hugs🤗. The nurses and doc are always saying to me I’m looking good - what am I suppose to look like? Hair thinning and looking very sorry for itself , eyebrows starting to fall out!! Not sure how I’d be looking if they said not looking good today!!! 😊However like you try and keep positive and smile.
Tropic-al good luck today- after today 100% fec ✅- for me this felt really good. SE have been ok for me this time , had to get up really early today as my youngest had school trip leaving early- my head is feeling a little swimmy now😖. Hoping no problems with needles today for you.
Linda Corrine - how are the SE with the T? Hopefully you’ve been sailing through it. Sorry you couldn’t cold cap, I remember reading somewhere that hair might grow on T!! Hope bandana shopping has helped.
Shi- thank you for your messages to us on this thread, you keep us going. Now many of us are over half way hope you’re preparing for our arrival in Greece!! We will need towels on those sun beds , lovely cold cocktails☀️🍸⛱ 🤗😍
Sorry if I’ve missed anyone- take one day at a time and then ✅ off😊
Big hugs to all you amazing ladies 🤗
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Re: May chemo starters 2018

Thanks for the words of encouragement Willie xx
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Re: May chemo starters 2018

Hets, hang in there, this too shall pass and you are strong enough to handle it.
Shi , thankyou, I called my unit as my temp did incresse slightly but settled again so I will.monitor it overnight call them.if I am concerned and they will contact me in the morning for a review.
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Re: May chemo starters 2018

Keep going ladies!!! I’m still in hospital they seem to be being super cautious this time because they can’t find the source of the infection. So a full 48 hours IV AB and then 24 hours obs on oral AB so I don’t think i’ll be home before sat morning. They have also ordered a brain ct scan because I’ve been having headaches for the last couple of months but I’m really not worrying (much) about that because feel sure I would be a lot sicker if I had stuff going on in my brain (family and friends say there has never been much stuff going on in my brain 🤣). But what’s now making me more frustrated is that they are delaying round 4 by a week and I am seeing onc next week to discuss whether the increasing risk from worsening infection which seems inevitable with each cycle is starting to outweigh the benefit in terms of risk reduction of having the chemo. Hate being in this situation because other than this I’m generally coping ok and looking really well. I’ve also been really positive but that’s starting to fade as well! Not waving the white flag yet though, I won’t give up that easilySmiley Happy xxx
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Re: May chemo starters 2018

Leanne17

 

I've jumped over from the July starters and saw your note about getting a PICC!   I made a song and dance about getting a PICC line ( I was terried as at least all of my surgeries have been when I was asleep), however, it was so easy and painless.  I am scared of needles and it's made the chemo thing (I've only had one so far, mind) really easy.   I compared having it to being an electric car, I just pull up, plug in, charge up and away we go.   

 

I hear you about the heat, I';d rather have this whole bald thing happen in the winter when I could hide under a hat or wig but we have to play with the cards we're dealt (in the **bleep**test game of blackjack in the word!). 

 

Willie xx

 

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Re: May chemo starters 2018

Hi all,

 

some ups and downs for some of us but hope everyone is doing well today.i treated myself to a big fat second today and now preparing myself for FEC 3... Yes tomorrow will be half way Jem..hoping that they feel I still have enough hair to carry on capping but think I should be ok. Hoping to continue as it gives me confidence but will prepare myself if not. Can't say I'm looking forward to tomorrow and the week that follows but at least I know pretty much what go expect from these drugs so more tennis and football for me next week with morning or evening walks. We're all doing brilliantly. Hope everything goes well for those ahead of me moving into T..big hugs. 

Tropic_al xx

Shi Community Champion
Community Champion

Re: May chemo starters 2018

Traceymac, please just give your unit a ring and make sure all ok, you are getting to nadir bit of the cycle where you need to be extra careful, best to make a quick call and keep safe😘hets, we’ll expect you to lead the he conga down the ward corridor then 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻💃🏻Triple bonus points for you if you can get nurses to join in too, keep 💪💪💪💪 keep focused ladies you are getting closer to your 🛎🛎🛎🛎 and all doing amazing 😁😁😁👍👍👍💕💕✨✨✨shi xx
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Re: May chemo starters 2018

@hets. Hope you feel better soon and can go home!! I feel a little guilty all of you seem to be having these horrible side effects and I’ve been so good. Maybe it was having the holiday to look forward to keeping me going. I just won’t let it stop me living my life.
You never know how strong you are until you have to deal with something like this hey ladies?!???
Sending you all with bad se’s Lots of hugs strength and positivity. Get out there and don’t let it get you down!!! We got this girls 💪💪💪💪💪
💕💕💕💕💕 Leanne xxx
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Re: May chemo starters 2018

Had 1st T yesterday. Couldnt do cold cap as hair too thin round top so cant pull it over top bit so abit peeved. Suggested gauze and hairnet but they said the gauze would stick to my head. So have ordered 4 cotton bandana scarves or similar from annabandana. They said i may keep my hair but its itchy and at least i am prepared.
Had to have an xray as my picc line had moved but was still in an ok position. Thought it could be removed although prob best to keep it to avoid bruises as they said my veins look like i will bruise easily. Was told to be careful but not sure how exactly?
Just felt cold and abit tired yesterday. Feel cold again now whilst in bed but thats usual for me but will check my temp shortly i think. Not felt sick but didnt go to the toilet yesterday so had 3 laxatives. Will see what today brings but so far so good.
Nice to meet up yesterday Jacqi and hope the fasting is going ok?
Jempd thanks for the message re clarity for if got 2 or 3 more T. Yes it would be nice to know but over half way now as 4 down. Yey!
Hope all ok. x
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Re: May chemo starters 2018

@Hets, get well and get yourself home, how strange that they don't know why you are spiking that temperature.
We are all doing so well considering several weeks have gone by with a multitude of side effects from us all.
I am day 8 of third FEC and been up all night with cramping and intermittent diarrhoea, temp has been fine and i haven't gone nover the 4 in 24 hours guideline but it's something that hasn't happened before. Seems to be settling now
Maybe coincidence and nothing to do with the chemo.

Sending positive vibes ladies, we can get through this.
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Re: May chemo starters 2018

Most of us are getting half way through now, can you believe it! @leanne have a lovely holiday, sad to be losing my chemo twin 😘. I had been feeling better and had a lovely 2 days with my girls in London beg of this week - and got some lovely lose linen dungarees from the market - think i’ll wear them 24/7! But stress of football was clearly too much because my temperature spiked again Tuesday night so back in hospital. Apparently I’m a bit of a mystery but hoping I will be home today and in the meantime I spend my time talking to the variety of lovely inmates here - woken up this morning to a few new victims! 🤣🤣🤣
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Re: May chemo starters 2018

Linda Corrine hope you get clarity soon. We have so much to cope with.
Cycle 3 day 2 - all good today- taken it easy, went for a walk to see the sea, sat listening to the gentle waves and seagulls reading my book😍it really is my happy place. Need to hold onto the good days.
Tropical-al sounds like you have been enjoying week 2 and 3😊. Sorry hair thinning. My hair is looking sad, when I asked nurses at assessment if ok to cold cap- they thought I had lots left which was encouraging, I wore a wet theatre cap to ensure no ice burns on areas thin. Good luck for Friday- I’m guessing half way- that’s also 100% fec ✅.
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Re: May chemo starters 2018

Hi everyone,

sorry I've been away trying to enjoy some good days with friends and working from home. Even went to my friend's 50th fancy dress last weekend which I thought I wouldn't go to..dressed as a burglar (B party) so that I could wear a black bandana over my thinning hair on top from the cold cap.  Just had bloods taken and preparing myself for cycle 3 of FEC on Friday 😒. Have been ok really on these drugs so just need to keep hydrated and sit out the horrible fatigue next week made worse by the hot weather really. At least there's the football and tennis go watch. Really dreading changing to T and Herceptin next time but have a few weeks to go before that. 

 

I could ups see the chat about PICC lines..I have a port which needs less flushing than a PICC line and sits under your skin. Was still a faff for them to get the needle in last time (and bit painful) but hoping for better things this time. It really depends how many more cycles you have to go I guess and any problems with veins. I was struggling with cannulas and have lots of treatments to go still, but either are nicer than cannulas in my opinion.

 

Right..must go and do some work before a walk and the tennis!

Hope you're all feeling ok today.

Tropic_al xx

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Re: May chemo starters 2018

@Jempd Not due to trial as not on trial now. I assume I find out after the August or 6th one but not sure now you have asked as I didn't ask but will next time. I have seen the oncologist the last 2 times for the pre assessment maybe because my ops in London at another hospital as I got a second opinion. I have had the last pre assessment time changed and today's time too so maybe they are all with the oncologist although that's the 8th and I won't have 8. She did say I would see someone else after the ultrasound as she's on holiday after cycle 5 so I would have seen her.

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Re: May chemo starters 2018

Cycle 3 today - felt teary before but held it together. This one felt tougher, slept for 2 1/2 hours when I got home. Now trying to focus on the football! At least I’ll be able to watch Wimbledon😊. Hoping SE not so bad, planning on walking a little more.
Leanne - no SE - that’s great and hope it continues. Sorry veins not good. I had PICC line from the start, it has been easy for bloods and chemo , but yes it is very obvious. There are so pretty covers.
TraceyMac hope you are now the other side of SE.
Herts- really hoping no more hospital hours for you this cycle. Wrap yourself in cotton wool🤗
Linda Corrine - it must be hard the not knowing - is this because of the trial? When will you know how many more. ‘hell on earth’ - really understand that. However I’m also trying to be thankful that we have access to this treatment when there are other women in other parts of this world that don’t have access, someone on another thread was encouraging by saying chemo is our friend- in my dark moments try to focus on this and find for me it helps.
Second half of footie beckons.
Big hugs to all, 🤗🤗
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Re: May chemo starters 2018

Thanks jacq
I’m trying to prepare myself to have it but would rather not this time of year. If it was winter and covered I wouldn’t mind so much!! But hey ho what will be will be. Xx
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Re: May chemo starters 2018

Found out today I am having 3 or 4 more cycles depending on the side effects. So last one is 15th August or 5th September. So I may be halfway through or I may be over half way or two thirds of the way through "hell on earth" (thats my name for chemo) tomoz as had 3 already.
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Re: May chemo starters 2018

Hi Leanne
Just wanted to let you know that I have found the picc line to be an absolute godsend. Drawing blood and chemo infusions are so easy and totally pain free( I am a bit of a wuss with needles)!. Yes it has to be covered to shower, but other than that I’m happy I had it,
Jacq x
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Re: May chemo starters 2018

Hi ladies
Hope everyone is doing ok. I’ve still had no bad side affects post cycle 3. Feel so lucky. The only issue I have are me veins and arm are very sore. Veins are raised and can’t straighten my arm without pain. Has anyone els got this?? Any tips to help?? I’m worried I will have to have pick line for final 3 cycles. Really didn’t want to have it.
Got my holiday first tho so 4th cycle will be postponed until 27th so hoping it will be better by then. Xx
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Re: May chemo starters 2018

Thanks Tanya,
I slept better last night as the dex has finished. I drink so much but always feel thirsty, I am able to stop the munchies that way too.
The worst is the fatigue and constant unclear head, it's difficult to focus. I wouldn't feel safe to even drive in my first 5 or 6 days we have to just ride it out and trust it will pass.

I hope all you ladies have had a weekend filled with overcoming your side effects too 🌞
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Re: May chemo starters 2018

Hi Tracy I start T on Friday 13th aarghh !!! And have appointment with the doctor when I have my bloods so I expect she will tell me more about it all then. As for sleep I was told not to take my second steroid of the day no later than 12.30 pm or I would not sleep and that if I was tired try to only sleep before 1pm it did start to work. I'm now feeling more myself so it does get better. I've also upped my water to 5 pints a day and that's stopped me rading the fridge all the time as all I want to do is eat when on the steroids x
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Re: May chemo starters 2018

Hi Tanya,

I am unable to open your photo from my phone, will try on the computer later. I am day 4 of FEC cycle 3 and only managing the same sleep as you, it's so tiring along with the constant feeling of a hangover without alcohol.
Glad to hear that you are starting to recover, it gives us all hope. Are you switching to taxotere for cycle 4?
Hope everyone is trying to somewhat enjoy the weekend of sunny weather despite what we are going through. Love and hugs xx
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Re: May chemo starters 2018

bald.pngHi ladies, I thought I would have a go at trying to post my bald look again .... hope your all doing well, this heat is not good for me It makes me more tired.  Im day 9 of cycle 3 and at last starting to feel more myself and finally managing 6 hours sleep, which is heaven as the first week I only manage 2 or 3. sending everyone best wishes and love xxx

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Re: May chemo starters 2018

Thank you Hets,
I think i will give that a try if I don't sleep tonight. Thanks for the tip. Much appreciated xx
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Re: May chemo starters 2018

Hiya, re not sleeping on steroids. I happen to have zopiclone (3.575mg) prescribed to use as and when (had this before being diagnosed) and I am finding it a godsave during steroid nights. If
You have an understanding gp/oncologist you may want to consider asking for the same. Of course it’s a personal thing.
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Re: May chemo starters 2018

Linda Corrine, you are wise to stay away from me of who aren't well. Even though we feel better, we are still immino suppressed and prone to picking up viruses and infections.

I take laxatives the night of chemo and will again tonight if nothing happens, it has happened each time with FEC if that helps xx
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Re: May chemo starters 2018

So do I need to take the laxatives on Tuesday still? I was going to ask on Tues at 9 when I see the oncologist as she said I would get the same side effects each time but maybe she just meant on FEC!
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Re: May chemo starters 2018

I am working full time but have taken 4 or 5 days off plus bank hols after the chemo. However i went in today and someone has a cold so i came home again as although its week 3 i dont think its worth the risk. I work in an office and like you want to feel normal for 9 to 11 working days when i feel ok to work as it stops me worrying about stuff.
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Re: May chemo starters 2018

TraceyMac the steroids keeping you awake is awful- hope you got some sleep.
My friends are amazing - this week (week 3) appears to have been a social whirl of walking, coffee and lunch! 1 friends runs this Sunday and then the other next Sunday - it is so humbling, I cry more over their kindness rather than this awful bc.
Hope se aren’t too bad - be kind to yourself.
Xx
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Re: May chemo starters 2018

@JemPD when are your friends doing the race for life? You have amazing support but it does turn the emotions on when people show they care.
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Re: May chemo starters 2018

Hi Linda,

Regarding working full time, I have been taking a week to 10 days off after each cycle of FEC and then working until the next one. I felt more tired after the 2nd and I just had my third yesterday which is likely why I am up at 3am! Returning to work is an individual choice based on how you are feeling and the nature of your work. Are you office based? Can you work phased return hours and see how you cope? Don't make yourself work because you feel you have to . I choose to do it because I enjoy the week and a half of a more 'normal' life between treatments. Stay well and put your health needs first xx
Shi Community Champion
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Re: May chemo starters 2018

Hi Linda, t can make you have squitty bum, so you might need to up your carbs. If you suddenly go hot during the infusion and your chest tightens shout out to the nurses, they will need to stop it, it could happen on any of the infusions with t, just wanted you to know so you keep safe. If it does happen ask your onc about abraxane as alternative, they don’t isually give it as it’s more expensive than t, but a few have been switched to that if they rest to the t. Keep 💪💪💪💪all of you, you are doing amazing 💕💕✨✨✨Shi xx
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Re: May chemo starters 2018

@hets67 yep its a relief to have more of a plan now. Most people respond to docetaxel and they said assume you will have 7 cycles. Is anyone else working full time once they get over the chemo each cycle? I am just worried re infections and stress as I work in insurance which can be stressful.
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Re: May chemo starters 2018

Hi Linda, good to hear from you. It must be a relief to have more of a plan? I can’t comment on docetaxal I’m sure others can, but looking on forums and from other friends it seems some people cope better with it than FEC and some find it harder. X
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Re: May chemo starters 2018

Found out today I am having docetaxel on Wednesday for 2 cycles then an ultrasound then 2 more if I respond. I have had 3 FEC so no more of that I am glad to say. What are the main side effects from docetaxel? I know you can have pain and dry skin and take steroids. I have a meeting with the oncologist on Tuesday so should get the steroids then as have to take them the day before the chemo. I would have had 4 FEC and 4 docetaxel and cyclophosphamide potentially at a later date and a biopsy after the FEC as I was on a trial. Its just nice to know rather than being in limbo.

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Re: May chemo starters 2018

@tracey Mac huge congratulations to your daughter! I have daughters around the same age - they have been incredibly supportive but a shave would be a step too far for them!! Can’t think of any tips on cycle 3 except what you already know - make the most of the time on steroids and don’t plan anything for days 4 onwards! @jem I’m just going bald, with sun hat if walking in direct sun and sometimes turbon type cap inside if I get cold. I’m ‘just’ doing 6 FEC - not sure if that’s better or worse or just different sort of yuk! Symptoms def becoming cumulative so god knows how I will be by the 6th cycle. Is anyone else having Zoledronic Acid? I had that with my 3rd cycle.
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Re: May chemo starters 2018

@JemPD, yes last FEC tomorrow then 3 T,'s which I am not even going to think about until next month 🤞
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Re: May chemo starters 2018

Ciao dall’italia Shi (hello from Italy)!😍
TraceyMac- wow, well done to your daughter- you must be so proud 💕. Hope FEC 3 goes well tomorrow- is this your final one and then T?
A few of my lovely friends are running race for life as a response to my diagnosis- again I’m really proud of them, 1 hadn’t ever run before and is up to the 10km😍
Hair- what a horrid se this is- the heat and wig don’t go so well together but persevering. Do you have a wig or are you enjoying scarves? I wear scarf indoors.
Hope everyone on cycle 3 is recovering from se- big hugs to you all. By week 2 you know you’ll be moving forward and looking forward to week 3. Trying to make the most of week 3- lots of lunches out with friends, enjoying the sunshine from the shade .
🤗
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Re: May chemo starters 2018

Hope everyone is doing okay.

My 21 year old daughter did her brave the shave for Macmillan today and raised over £1000, I am so proud and emotional, I am having mine cut next week, despite the cold capping my hair has thinned so much and needs to be shorter.

I have my third FEC tomorrow so any advice is welcome 🙄👍
Shi Community Champion
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Re: May chemo starters 2018

Jem 😁😁you are all over 🇮🇹 now look out the window can you see the leaning tower of pizza? That’s be hets car people when those prawns start to defrost, pheeewww weee they will be leaning too 💕💕💕✨✨✨Shi xx
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Re: May chemo starters 2018

Herts - so cross about your car situation . But in the scheme of things..
I’m week 3 of cycle 2 and back to my usually positive energetic self😊. Been brave and wore wig out of house- in school playground I’ve had 8 people comment on my gorgeous hair in 1 afternoon!(only 2 friends are aware of treatment). Felt a bit of a fraud really but I smiled and said thank you.
I’m sorry cycle 3 is so horrid for you😖. Have you called the team for suggestions? A few others on different threads have said walking each day has helped with side effects.
Big hugs to all, especially those in the pits of week 1- it does appear cycle 3 presents new and not so welcome challenges. We are amazing ladies who will get each other through this time. As Shi posted a few weeks back - we’re on our way to Greece where the sun is warm and the sea blue- perhaps the altitude over the alps is to blame!! 🏖😍☀️
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Re: May chemo starters 2018

@shi 🤣🤣🤣. I’ll do that, because it’s making me so stressed and irrational!! How is everybody else doing with cycle 3? I have the biggest headache!!!!
Shi Community Champion
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Re: May chemo starters 2018

🤣😂🤣😂🤣Tracey mac, it is the chemo and the rest of your goody bag that makes brains a bit 🤪🤪🤪 hets, concentrate on you, you are what matters right now, let them have the car back and ram some frozen prawns down the back seat or ram them under the spare wheel in the boot, it’ll stink lovely in this heat and they will have to rip the car apart to find the stench ❤️❤️❤️any comeback deny all knowledge and say a bag must have split when you did shopping or something along those lines 👍👍👍then sit back have a cup of tea and a Jaffa 😁💕💕✨✨✨Shi xx
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Re: May chemo starters 2018

Sorry Hets, misread the post. As Shi would say....blame the drugs!!!! It is an unfortunate situation that you could do without. Will probably.cost them more in admin fees to sort out than to just let you keep the car!
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Re: May chemo starters 2018

@Tracey Mac it’s me not She. Yes whilst I’m off sick. It’s ironic because it will cost them more because they will have to break the lease I assume (I’m mid term). Also ironic because we have an old car loan on our other car who are falling over backwards to help us so my husband can continue to get to work. No energy to fight it. Sure I will feel better tomorrow
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Re: May chemo starters 2018

Sorry to hear this Shi, not what you need to hear roght now with everything else to deal with. Are they taking the car whilst you are having time off work for treatment? Will you get it back on your return?
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Re: May chemo starters 2018

@shi good shout!! Day 5 predictably bloody awful (no other words to use). V tearful as well not helped by my employer emailing me to confirm they are taking my company (ergo family) car off me at beg August. Thank goodness for Poldark!