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December 2019 Chemo Starters

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Re: December 2019 Chemo Starters

I’m quite lucky work have been really good and said I can come and go as I need to because it has kept me sane throughout the last 2/3months.

 

im a regional manager usually but am going to be working from home doing work at my computer and Skyping in to meeting when I feel well.

 

I think it depends what you do as well, I work in day nurseries so I’d be silly to carry on as normal as there’s so many bugs etc going round but I need to do something to keep me distracted when I feel up to to it

 

you definitely need work to be flexible tho I worked Monday Tuesday then hit a wall about 4pm and was exhausted on Wednesday, had my picc line redressed and when I got home fell asleep! 

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Re: December 2019 Chemo Starters

Because the injections are to boost white blood cell production they stimulate the bone marrow so there is potential for joint ache. Hopefully you might not get this side effect, but I am expecting I will as I have hip and knee trouble on and off anyway. My solution to that is painkillers and heated wheat bags with crossed fingers.

 

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Re: December 2019 Chemo Starters

Ngh1974

im not going back to work til it’s all over and done with. Don’t think I could face it!! Taking time for myself to get fighting for again and put this nightmare behind me xx

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Re: December 2019 Chemo Starters

Hi all

I started my injections on day 3.. took before bed with Paracetamol and all ok there. 

I’m also a nurse (in theatres) so didn’t really bother me too much.

have def lost my taste buds, which I’m gutted about. 
Its nice that we’re all quite young on here.. Hopefully we’ll be able to chat and help each other out.. it’s nice to know there’s others going through the sane **bleep** as you, if that’s makes sense? Xx

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Re: December 2019 Chemo Starters

Fluffball I am sorry to hear that, but I have heard so many positive stories so hang on in there. Sound like you’ve got amazing support around you and we’re here for the highs and lows.

 

Sorry to hear about the port insertion. I’m having mine done a week on Monday but I think it’s via an old school method (I hope!).

 

To those who have already started chemo, your positivity is brilliant and I’m writing down all the tips. Thank you!  I worked out I’ll end up having 16 rounds of chemo in total so need all the hints and tips for survival I can get...

 

What are people doing about work during chemo? I’m desperate to carry on - I love my job and having to step down for a period feels like it would be an added crappy side effect. I know I need to look after myself but I have found the distraction of work incredibly helpful. 

Hope you’re all having good weekends x

 

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Re: December 2019 Chemo Starters

Hi all,

 

real name Kathryn 😁

 

so searching on these forums apparently the sore nose is quite common but still find it random some suggested remedies are sudocrem and Vaseline in case anyone finds similar going to try them I’ll keep you updated!!

 

DJ43 I’ll keep you all updated with symptoms but think iv been fairly lucky so far altho I am very conscious that it’s only my first round

 

one tip I did read was drink 2l of water the day before, day of and day after chemo. I did, I don’t know if that’s helped or just coincidence but I’m willing to try anything!

 

iv also been on the injections days 5-11. I’m quite slim so was worried it would hurt but not too bad although I did suddenly realise yesterday, on day 10, if I sit down while I take it it’s easier to grab the fat🤦‍♀️ They seem to give me headache tho not sure if it’s coincidence 

lady 34 I too am on the anything that tastes good will do ... ate a box of Jaffa cakes for breakfast this morning 😂

 

this thread is definitely more me even though I am just outside the 70’s, I’m 1980, the other thread I was reading they were all talking about plant based diets and altho I respect them and their choices my favourite restaurant is TGI’s and Miller and Carter 👍

 

fingers crossed we all continue to have a relatively good reaction 🤞

 

 

 

 

 

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Re: December 2019 Chemo Starters

Hi Silvertong

I didn’t know it could cause aches will take paracetamol if needed. Nurse told me to inject in the morning. So much to learn don’t know many of the abbreviations used on this site either. 


@silvertong wrote:

I just had to do my first injection yesterday. It would seem these start at different points depending on what chemo you are having and maybe how often. I opted to do mine late so if it causes aches it will be overnight and I think I can manage that better. Was quite nervous about it but the needle is tiny and yes, belly fat is a bonus in this scenario! Just as well as I have to do 7 of these every 2 week cycle Woman Indifferent

 


 

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Re: December 2019 Chemo Starters

I just had to do my first injection yesterday. It would seem these start at different points depending on what chemo you are having and maybe how often. I opted to do mine late so if it causes aches it will be overnight and I think I can manage that better. Was quite nervous about it but the needle is tiny and yes, belly fat is a bonus in this scenario! Just as well as I have to do 7 of these every 2 week cycle Woman Indifferent

 

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Re: December 2019 Chemo Starters

Dj43 that’s good to know you’re on the inside of treatment experience as a nurse so admired the chemo team I had and the patience of the nurse injecting me. 

 

Not it sure why they’ve given me the cell boost injections as my reading prior to chemo was good. Perhaps just to boost recovery. 

 

Youll be fine. I started to flinch when I saw the needle but it’s so fine I felt nothing 😀 fat helped. 

BW xxx

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Re: December 2019 Chemo Starters

Hi Aurore

At least you have your actual diagnosis now and the treatment plan is forming. But yes all the waiting around is difficult isn't it!

A friend of mines colleague (I mentioned her earlier in the thread, she was the lady who had excellent response to chemo and her tumour had disappeared by the time she completed chemo before her surgery) she was also involved in a clinical trial, though I'm not sure which one, so it certainly seemed to help her! 

Hope you have a good weekend, won't be long til you get started.xx

 

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Re: December 2019 Chemo Starters

Sorry I'm doing these replys individually but I'm murder with names and don't want to confuse the thread by mixing people and their situations up....God knows what I'll be like if I get chemo brain, my poor family, lol.

 

Lady34

Glad you're still feeling well. So did they start you on the injections right away? I though they waited to see how your blood count responded to first dose, so that's good to know. I think I'll definitely try the manuka honey tip that one of the 2017 girls suggested. 

I don't know how I'll be giving myself an injection, even though I'm a practice nurse and gave other BC ladies their big hormone injections regularly, doing it to myself is a different matter😂. So well done you!

Hope you have a good weekend.xx

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Re: December 2019 Chemo Starters

Welcome to the thread ostrich Kat!

Glad to have someone else already on the chemo cold cap path for advice. 😊

I'm metaplastic triple neg. Already had surgery with clear margins and clear nodes but some vascular invasion around the tumour. Pleased with the clear margins but metaplastic unfortunately is particularly aggressive, high chance of recurrence, and quickly, and higher chance of distant metastases even without lymph node involvement. Also has a rep for being a bit more chemo resistant than other triple negatives so really have to hope it doesn't travel  🤞.

Due to start chemo on Thursday so glad to hear any tips on managing symptoms.

Hope you continue to feel well,

A sore nose? That's random...wasn't expecting that yo be a side effect, lol.

Hope you have a good weekend.xx

 

 

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Re: December 2019 Chemo Starters

Hi everyone,

Been a busy couple of days for everyone by the sounds of it!

Fluffball, I'm  gutted to read your news I can totally understand you having a melt down, metastases is the one word none of us want to hear BUT they're small, you've still to get the chemo and if that does its job it'll mop all that right up! 

I was speaking to a fellow metaplastic lady who had lymph spread (into her collarbone) and our particular type of BC is known to be chemo resistant, after her chemo it was all gone and she's now 5 years clear!

So even when you feel the odds are against you our remarkable oncology teams can do wonders. So just keep on keeping on!!

Xxx

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Re: December 2019 Chemo Starters

Good morning ladies thank you all for your messages. Didn’t sleep well last night though was tired after first chemo but couldn’t switch off. Some of this due to relief that I’m on the way forward and ok. 

 

Little did I know that my stomach fat would be so useful 😀 Injected Filgrastim today got 5 days supply to promote white blood cells. 

 

Taken nausea tab and 2 others so on it and focused. Appetite feel nothing but forced myself as had to eat before meds. Found lime marmalade on toast went down easily. 

 

Staying in for for at least 5 days I’ve decided plus nice nurse advised having one or two baths a day to relax and manage germs. 

 

Hubby gone shopping with long list 😀 may not want meals so fruits veg may do smoothies plus FAST FOOD 🤣 yes believe it. I’m going to make myself a burger or hotdog and salad with sauerkraut on the side for gut bacteria. Fancy bland things may do shepherds pie on Sunday. 

 

For now feeling good counting my blessing. Checking to see if any shrinking is going on. Hard to tell though. If anyone’s felt a difference please share. 

 

Yes 70’s ladies rock alongside 50,60,80,90,2000 ladies. Wishing us all rocking on xxxx

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Re: December 2019 Chemo Starters

Hi all, 

after 3 weeks of tests yesterday it was confirmed that I am triple negative grade 3; 2.1cm tumour and 1 lymph node involved. Was due to meet oncologist yesterday but cancelled at the last minute and met with the consultant instead. They would like to put me forward for a clinical trial therefore will need to meet with the oncologist leading on it at some point next week. Plan is to start with chemo (not sure what it will look like) and possible other drugs if I agree to the trial and am accepted on it, getting marker inserted on Monday. A bit more waiting for me (which I can’t bear anymore) but should hopefully (sic) the week after next! 

It has been useful to read all the message on this group and I am going out today to buy my chemo bag. So good to read how you girls have started your chemo... and are so positive. 

I am also a 70s baby (1972 exactly) and based in London! 

Aurore 

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Re: December 2019 Chemo Starters

I too am just seeing what happens with the chemo, then take things from there.

im the other way.. not much of an appetite yet ( not like me at all) seem to have already lost my taste buds! 😱

just managing to eat very plain, smallish meals xx

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Re: December 2019 Chemo Starters

Yeah I had the surgery first as they thought it was just DCIS and only did lymph node biopsy as a precaution then the results came back and everyone was a bit surprised!

 

they are recommending radiotherapy after altho I’m not really on board with that!

then have to have more surgery as they didn’t get a big enough margin and my surgeon wants to remove all the lymph nodes ,

think I prefer that to the radiotherapy but going to get the chemo done and see where I’m at!

 

glad you found the cap do able as well feel a bit more reassured now! 

Just wondering tho, how’s your appetite? Everyone told me to eat when hungry as I’ll struggle ... literally hungry all the time !!! Going to finish chemo obese if I’m not careful 😂

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Re: December 2019 Chemo Starters

Hi ostrich-kat

nice to hear from u

youre a bit further along than me.. chemo first for me to hopefully shrink my big (4cm) idc and lymph node then surgery to follow, then radiotherapy.  Mines grade 2, stage 2.. her2 neg, receptive to oestrogen. 

my nurse also had to check the cold cap as I found it so tolerable (used head band too) .. we must just be hardcore!! 💪🏼

feel ok at the mo, so taking this as a good sign.. I too really don’t want to lose my hair either, but we’ll just have to see what happens eh?? 
xx

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Re: December 2019 Chemo Starters

Hi carolyn

 

sounds like we’re on a similar journey!

 

im 39 have idc and dcis, 1 ln involved grade 3 triple neg.

 

iv had surgery and started fec-t 6 rounds every 3 weeks on 27th Nov - this thread seemed more relevant so going with it!


i tried cold cap, despite everyone telling me it’s the worst thing and don’t bother! I didn’t find it too bad, was advised by a local charity to wear a headband on my forehead and ears and this really seemed to help. Infact iv been worried it wasn’t on properly as I found it so manageable!

hopefully it will work as despite lots of people telling me that the hair loss is they least of my worries’ it actually is my biggest!

 

I seem to be ok so far, tired and nausea after my first round for a couple of days then felt good so prob did way too much the next 4 days and crashed day 7! Lol

 

my biggest side effect is a really sore nose and headaches.

 

anyway sorry for hijacking your post!

i hope your first season went well, let me know how you get on x x

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Re: December 2019 Chemo Starters

Thank you Carolyn!

 

It's just a bit of a sick to the system seeing those specks, up to now I've been hoping the blood markers were simply an abnormality - but, as you say the hope is the chemo already planned may well get rid anyways, hence no MRI until next summer.

I had a single mastectomy and auxiliary node clearance back in October, so for me this is the second part of treatment, have a seroma still 😔 which is annoying, but told them no more draining as it just keeps coming back, so simply waiting for it to reabsorb naturally - the op itself wasn't a problem for those with them in their future, I had a cute anaesthetist which helped too!!! 😁

Right... Operation find brekkie is now on!!! 😁 Xx

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Re: December 2019 Chemo Starters

Hey fluffball

firstly.. so sorry to hear your lasted news, but its so important to stay positive!!

as u said, it’s 2 tiny specks on lung. And the chemo drugs can do wonders these days and will no doubt blast them into oblivion with the rest of the nasty cells. 
Is chemo your 1st treatment too? Before any surgery?

Honestly my lovely, cancer really isn’t the death sentence it once was.. there’s so much they can do nowadays.. and finding new techniques and drugs every day. 
positivity (I know it’s hard sometimes) is really important. Studies have shown this. 
You’re right, us 70s born babies are bloody fabulous and tough cookies!! 
let’s all keep in touch, share stories, tips and emotions and I’m 100% positive we’ll all come out the other side and my god, we’ll be stronger for it! 
lots of love xxxx

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Re: December 2019 Chemo Starters

Good morning ladies... 

 

I think I've caught up, lovely wig back there Dj43, very natural, Carolyn great to hear you've bounced back really quickly, gives us hope!

 

I went to get my portacath fitted on Thursday, to get the news that the scan picked up definitive evidence of metastasis on the lung 😔 - whilst my diagnosis had been that they were sure it had metastasized, they hadn't found any evidence only clues in blood markers, so it never felt real. Now, 2 tiny specks I was shown on an ultrasound scan have completely floored me. 

Whislt being shown, I was simply saying "OK, we knew something was around, yeah, that's tiny, what now?"  calm, collected, outwardly dealing with it. I chatted whilst having my port put in, it was a brand new machine so the doctor was using it for the first time, so what should have been 45-60  minute procedure turned into a 110 minute procedure, plus the added information being put into my file and I was in there for over 2 hours, then 40 minutes for a quick x-ray (which had to be taken twice because doughnut here didn't think to take her bra off!!) and home with my son and niece who had accompanied me 

I got home before I fell apart, my hice and son didn't know what I'd been told so I kinda freaked them out!

Anway... Fast forward lots of discussion on the phone, a funeral I attended yesterday where I was doing a reading through tears and emotion, made so such worse by my own news and fears, and my team have decided that for now, we are going ahead with plans as they are, an extra scan or so with a full MRI at the end of the active treatment already planned before anything else is discussed. 

I've spent last night chatting with my son, niece and husband, trying to come to terms with the confirmation of what up to now has felt ghost like and unreal and now putting on some of those big girl panties, a pair of docs and a headband and facing the world with rather new eyes.

Brekkie and the pictures this morning to see Jumanji and laugh, say goodbye to niece and son tomorrow and start the chemo Monday wih hubby by my side.

For those who've joined since I last posted, apologies for the rambling rant/howl and hello 👋, for those who've started treatment since I last posted - yay, already a step closer to the end! Let's keep those stories of how little this icky treatment has hit us too and have a great December 2019 group!!! Oh... And I was born 1972, so by the looks of things I got into this world a little earlier than many here, but oh my, aren't we 70's babies just awesome!! 😁 

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Re: December 2019 Chemo Starters

Lady34, glad it went well and you were good to eat, that's a good idea for the slow cooker might do the same!

Carolyn99 that's good you u/sound was encouraging news, hopefully that chemo will blast the one lymph node involved. Xx

 

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Re: December 2019 Chemo Starters

Lady34

so glad to hear that. I took 2 paracetamol 30 mins before, and think it def helped. 
has my marker put in today and ultrasound confirmed cancer only in breast and the 1 lymph node nearest the breast, so good news.  I’ve felt great today.. no problems whatsoever. 
let’s hope this chemo does it’s job and blasts those nasties! 🤞🤞xx

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Re: December 2019 Chemo Starters

Take all your anti sickness meds as advised and keeeeeppp drinking!

 

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Re: December 2019 Chemo Starters

Hi ladies

thanks Carolyn99 yes feels good it’s one done. It was fine just 4 hours. Cold cap has some discomfort but worth it advised for next time to take the 2 paracetamol 20 mins before arriving so it will kick in good time. 

 

Put a stew into the slow cooker last night so had a nourishing bowl soon as I got home. Going to try to sleep or at least cat nap now. 

Praying my meds travel straight to the tumor and kick ass! 

 

Doing well so far ladies. All the best xxx

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Re: December 2019 Chemo Starters

I hope it's been ok, Lady34....

As Carolyn99 says, one down. xx

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Re: December 2019 Chemo Starters

Good luck lady 34.. u will smash it! 1 down soon! Xx

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Re: December 2019 Chemo Starters

Many thanks Dj43. Awake most of the night. Taking sandwiches in case needed. Will check in with you all after. 

Xxx

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Re: December 2019 Chemo Starters

Good luck for today lady34,

Hope you get through it no problem and with little in the way if SE's.xxx

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Re: December 2019 Chemo Starters

Well the wig looks really natural DJ43. I am impressed.

Mcxxx

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Re: December 2019 Chemo Starters

Awwww, it’s nice that there’s a few of us around the same age on here. 
I Definately feel like this whole thing is happening to someone else.. even after my first chemo!! Strange eh??

Hopefully, when all done this will feel like a distant dream and we can get on with our lives! 

my surgery is to follow chemo, so I too feel like I have a long road still ahead of me, but I’m staying positive and we really are in the best possible hands! 
we’ll get through this ladies, and we’ll be stronger at the end of it! Positive Mental Attitude!! 💪🏼💪🏼💪🏼Xxx

 

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Re: December 2019 Chemo Starters

Ngh1974 

Sounds like they're hitting you hard, but glad you're recovering from surgery. 

I'm a 1975 baby! But right at the end so not 44 til end of the month, so I'm hanging onto that 43 ?.

 

Mc22 I think the wig is synthetic as the hairdresser said it can't be styled with tongs or heat appliances but I think it looks quite natural so if the cold cap doesn't work I won't be devastated to have to wear this when I'm out and about. Xx

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Re: December 2019 Chemo Starters

Ngh1974 

Sounds like they're hitting you hard, but glad you're recovering from surgery. 

I'm a 1975 baby! But right at the end so not 44 til end of the month, so I'm hanging onto that 43 😊.

 

Mc22 I think the wig is synthetic as the hairdresser said it can't be styled with tongs or heat appliances but I think it looks quite natural so if the cold cap doesn't work I won't be devastated to have to wear this when I'm out and about. Xx

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Re: December 2019 Chemo Starters

That’s great to hear carolyn99. I’m definitely going to go in with a positive attitude so hope that will help too!

 

I am a ‘74 baby. I’m only just still in the ‘Young’ bracket for cancer.

 

Does anyone else feel like it’s a total out of body experience? I still don’t quite believe it’s happening to me....

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Re: December 2019 Chemo Starters

ngh1974

hi

i has my first chemo on tues afternoon, few days of nausea but I felt as right as rain today, so don’t worry.

i had the cold cap on the whole time, and found it more uncomfortable than painful.. first 20 mins is the worst.. then it just goes numb.. it’s doable! And worth trying( if we do lose our hair, we’ve tried all we can to keep it)

are u a 1974 baby? I’m 1975. 
Xx

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Re: December 2019 Chemo Starters

Thought I'd say hi.  Feeling I need a bit of solidarity. 

 

Had my op on the 11th Nov (double mastectomy and lymph dissection) and I'm tender but up and about and even went back to work yesterday. 

 

I've got a long road ahead and seems I'm going to be given a truck load of chemo - 24 weeks worth.  Initially every 3 weeks then weekly for 12 weeks.... I was pretty disappointed but it is what it is. I'm going to do all I can to try to keep healthy and as active as possible. 

 

You're all asking similar questions to the ones I have floating around my head so it's really helpful and reassuring. Port insertion on the 16th and chemo starts on the 17th Dec.  I'm going to attempt the cold cap so would be interested to hear your experiences. 

 

Good luck everyone!  I look forward to going on this unenviable journey with you..... x

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Re: December 2019 Chemo Starters

Took the senokot not the senior 🙄sorry text gremlins 💕💕Shi xx

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Re: December 2019 Chemo Starters

Hi chaffinch ❤️ Dec thread our Oct17 gang still talk daily and laugh daily 👭👭and 👭👭 our Jencat and buddyfan are on the threads too. Great wig 👍 they are so amazing now, no one can tell 👍 take it one treatment at a time, keep focused and laugh through this together, and you will laugh, the steroids will get you bouncing off the walls be ready for 2 am chats with each other on here and partners telling you to put your phone down as you chat away to each other all the time ❤️❤️ But who else can you share botty trouble stories with but your chemo gang who will understand when the steroid block you up, get senokot and movicol and anosol. I had chemo on a Thursday and took the senior for a few days from the sundays during fec. On t it was the other way 🌪🌪🌪botty 😳 carbs had to be upped 😳 but remember we are all individual and it can be different for each of you ❤️💕💕Shi xx

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Re: December 2019 Chemo Starters

Start chemo in the morning all I can do is eat kettle crisps. 2 big bags so far 😀🤣😀

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Re: December 2019 Chemo Starters

Your wig looks fabulous, really natural. Is is synthetic or real hair?

Mc22

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Re: December 2019 Chemo Starters

Fantastic Dj43 looks totally natural 

xxx

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Re: December 2019 Chemo Starters

Dj43.. looks fab xx

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Re: December 2019 Chemo Starters

Looks great, DJ43 🙂

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Re: December 2019 Chemo Starters

I haven't had it cut to shape yet but this is the one I got today. We get a wig voucher up here and a list of hairdressers that participate. This should've bee £320!! It's really great though, I can pull the fringe back and you'd never know, the hairline is invisible. So at least if the cold cap doesn't work. I have a wig ready. It's lighter than my own hair, I'm strawberry blonde kinda colour, pale ginger so they didn't have one my colour, this looks like I've had my hair highlighted.x

 

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Re: December 2019 Chemo Starters

IMG_20191205_151641.jpg

 

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Re: December 2019 Chemo Starters

Just popping in to say hello. Made me quite emotional reading your thread. Shi & I & our October 17 chemo group were a couple of months in at this stage 2 years ago. Hang in there ladies it’s doable but take time out and take care of yourselves. Ignore as much as you can the demands of everyday life and do only as much as you feel you can. It helped me to try and keep up a normalish routine but everyone is different just do what feels right. After I came out the other side of each cycle which was usually after about 5-6 days I would take myself outside for a short walk each day which helped no end with my mental and physical well being. Even in the days after chemo I’d make sure I walked around the house a bit each hour or so, seemed to stop me feeling too sorry for myself. You really appreciate the simple things like a bath and getting dressed and when you actually fancy food and enjoy it. Take your anti sickness meds regularly fir longer than you think you need them if they don’t work ask for stronger ones don’t suffer in silence. I found a few almonds helped when I was feeling hollow and nauseous I felt like I had morning sickness 🙄. Take Manuka honey at least 10+ to support your immune system it worked for me after borderline low white cells after first cycle never had the problem again. Use the support here. We have made true life long friendship that totally get each other. Cone here anytime for support such a great resource for advice and laughter. We laughed way more than any of us thought possible at first. Wishing you all well 😘
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Re: December 2019 Chemo Starters

Blimey must be good quality. I’ve no experience of wigs never felt fake hair so had no comparisons. Haven’t tried mine on yet. Hoping I won’t need em. 

Xx

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Re: December 2019 Chemo Starters

Lady34

i got mind from a special wig place near where I live. It’s nice, long and dark like my own.. it cost me £230.. not cheap! Xx

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Re: December 2019 Chemo Starters

What wig place dyu mean the hospitals provision. Nurse told me they had this but I couldn’t be bothered to go there so got em from wish.com. Ones a bit plasticky but the long hair ones ok looks ok. Been looking at ladies with false hair as their everyday norm and decided to be creative with it. Not quite Cher more like Sonny 🤣