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August 2018 Chemo starters

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Re: August 2018 Chemo starters

Hi Jude, that's quite understandable re hair! I used the cold cap for FEC, but it had thinned too much when I started on T. I didn't think I lost all my hair, but my daughter's said that I did! Maybe I was a bit delluded! I think YD felt sorry for me, she said I might have had about 3 strands left!

My hair has grown back really well! I didn't put anything on it to help it's growth and it's so thick I've had to have it thinned at the top twice! I can't say I like it much cause it's got a curl and shorter than I'm used to, but looking at it I don't think anyone would guess that this time last year I didn't have any! (apart from 3 strands! Smiley Happy) Hope your's has started to grow back well.

My eyebrows however seem to have given up half way across!

I'm ok thanks, but have found the emotional side quite hard at times. Probably not helped by the fact that although I finished rads in June, I wasn't told I was NED until just before Christmas. I'd had (still can't get used to saying that!) a few mm's of cancer in my internal mammary chain and both the chemo and rads oncs were confident that the rads would zap it, but I couldn't have a CT too soon afterwards to check, so it's been hanging over me. I've been having some counselling through Macmillan and some massages through a local charity and they're helping. How are you? x

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Re: August 2018 Chemo starters

That’s good news Jencat - anything that’s helps to prevent recurrence is worth doing.
Hope you are doing well, as you are 10 months in front of us - did you lose your hair & if so how’s it come back? Sorry I’m a bit obsessed with the hair malarkey
Jude x
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Re: August 2018 Chemo starters

Nearly there Sue, I found it was a relief to finish rads more so than the chemo x
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Re: August 2018 Chemo starters

Good luck with the radiotherapy Cat, drink plenty of water & keep moisturised!
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Re: August 2018 Chemo starters

Hi Jude, Sue, Jo and Cat, I'm from the Oct '17 thread and also on bishosphonates. (Zoldronic Acid) I have a 6 monthly infusion. I'm also post menopause. I had cancer in 3 lymph nodes and TN. I was told by my onc that it helps to stop bc spreading into the bones, but recent studies had also shown that it also helps to prevent a recurrance xx

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Re: August 2018 Chemo starters

Good luck with the radiotherapy Cat - I've found it so much easier than chemo.

Remember to moisturise lots - I take some with me to apply after treatment before I get dressed again and then reapply at least twice more during the day.

Sue x
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Re: August 2018 Chemo starters

Thanks for the info Jude.

I'm due to have a follow up appointment with the oncologist once my radiotherapy is over so I guess they'll talk to me about further drugs then if necessary.

I finish rads on Thursday and am so looking forward to this stage being over.

Sue xx
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Re: August 2018 Chemo starters

And Jo good luck with the trial! 👍
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Re: August 2018 Chemo starters

Hi Lovely Ladies,

I started radiotherapy today...1 session down, 19 to go! 😀

Jude/Sue/Jo - I’m also on bisphosphonates, 6 monthly injections for (I think!) 2 years. Similar to Jude I’m 51, post menopause, Her2+ with no spread to lymph nodes. I’m also just starting Tamoxifen.

Keep smiling ladies 😘
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Re: August 2018 Chemo starters

Hi Jo

 

So it’s hormone treatment for you, will that put you into the menopause or have you already had that pleasure? If you have been through it, do you go through it again?

Well done for going with the trial, hopefully you’ll get the product rather than the placebo especially if it’s already had good results with secondary bc

 

Take care

 

jude x

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Re: August 2018 Chemo starters

Hi Sue

Bisphosphanates prevent loss of bone density, I think breast cancer & the treatment of, can cause bone loss. Why some people are put on it & not others I’m not sure - I’m 56 & post menopause so whether that has any relation to it. My cancer was HER2+ & hadn’t spread to my lymph. One of the oncologists has said bisphosphonates can also help mop up any stray cancer cells in the bones but mine hadn’t spread...

To be honest  I’ll take anything they suggest if it may help

 

hope you are ok

 

jude x

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Re: August 2018 Chemo starters

Hi Jude,

I’m on Letrozole (hormone tablet) as mine was hormone positive and I’m also on biosulphates but I’m on a 6monthly infusion. I have to go to the chemo unit to have it administered. Interesting how you are on a daily tablet and I’m a 6monthly infusion. 

I was told the biosulphate was because the Letrozole can cause osteoporosis and it is to counteract that SE and also strengthen the bones for any future invasion! Also on Calcium tablets to help the formation of calcium in bones. I will also be on biosulphates for 3years.

 

Ive also just signed up for a trial so I might be on another drug.....or maybe  it, but whatever I will get additional monitoring so quite pleased about that. The trial is for primary hormone positive cancers with 4-9 lymph nodes involved. 

It’s using a drug that is already been used for advanced cases of bc and can slow down the spread, they are seeing whether it prevents recurrence in primary cases. 

 

Jo

 

 

 

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Re: August 2018 Chemo starters

Hello Jude

If you don't mind me asking - what are the bisphosphonate tablets for? I've never heard of that type of treatment

Sue xx
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Re: August 2018 Chemo starters

Hi Jo

 

I have been using the Nioxin products so whether they have helped...but it is thickening up more than length.

I spoke to my hairdresser on Friday & she will use a dye suited to white/grey hair, she is confident it will take ok

It’s been a tough gig so I think we are entitled to feel a bit emotional at the end of radiotherapy - what additional treatment / medication are you on now?

I’ve got 3 weekly herceptin injections until September & have just started a daily bisphosphonate tablet which I need to take for 3 years

 

Take care all

 

jude x 

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Re: August 2018 Chemo starters

Sunflower18, I was really emotional when I finished rads too. I only made it as far as the reception desk before I burst into tears! You're right, we've been on a very big rollercoaster and I'm not keen on them! xx

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Re: August 2018 Chemo starters

Wow Jude, I can’t believe you are getting your hair coloured in a couple of weeks.....my hair is barely visible,  not much at all. It is literally just starting to show and very fine. 

I finished chemo on 12th Nov but I think I will be getting value for money with my wig!,

 

I finished radiotherapy today....I’ve thought I would be so happy to finish but I was really emotional and got very tearful when I got home. 

I suppose though this whole journey has been a rollercoaster xx

 

 

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Re: August 2018 Chemo starters

Tarnia - that’s great news re your surgery - you must feel relieved, radiotherapy is quite straightforward compared to chemo - top tip take antihistamines as they will help with prickly heat rash - unfortunately I was only told at my second to last session 😂
I do wish I’d had my eyebrows microbladed before chemo as I didn’t realise there was a risk of infection once chemo had started. I have found a very good eyebrow pencil which gives hair like strokes - provided that you use it very lightly - Naqier beauty microblading etebrow tattoo pen, I bought colour 01 which is a dark brown, think I got it off amazon
I’m aiming to have my hair coloured in 2 weeks so I’ll update then - fingers crossed
I still need to get on a look good feel better course!

Take care all

Jude x

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Re: August 2018 Chemo starters

Thanks Sue, sounds like everyone is finding radiotherapy ‘a walk in the park’ compared to chemo. A bit of soreness I ca handle 😉 and I think applying cream regularly helps. I went on the look good feel good session a while back, definitely worth going even just for the lovely free goodies! 👍

Congratulations on the results from your surgery Tarnia, great news! I had my eyebrows microbladed before chemo too and agree that it turned out to be a good decision.....it’s bad enough having no eyelashes! 😉

Take care everyone 😘
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Re: August 2018 Chemo starters

Hi Jude 

My last chemo was 6 weeks ago and this week I’ve lost the last few remaining top lashes. 🙁 bottom ones have long gone!! I’m willing them to grow back quickly but no idea how long it will take! I had my eyebrows microbladed before chemo and I’m thankful I did as not much eyebrow hair remains either 🙁.... on a plus note, I last epilated my legs around my 1st chemo (16/8) and haven’t seen a hair since! Now that I don’t mind 😂.

 

Very interested to hear how everyone is finding radiotherapy. I have an appointment with my oncologist tomorrow to discuss it.

 

Had an appointment yesterday with surgeon and was told they found nothing, no cancer or DCIS, with my last surgery (27/12) so been signed off by him until my next mammogram which he said will be December (a year after last surgery date)! 

 

Take me care all.

Tarnia 

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Re: August 2018 Chemo starters

Good luck with the radiotherapy Cat - compared to chemo it's been a bit of a doddle though I am now starting to get a bit pink and sore and I'm going bra less around the house. Plus I got the joyous news yesterday that the pinkness will likely intensify after treatment has finished......

My hair sounds pretty much the same as yours Jude - white with dark bits whereas before I was blond. I've read that this is due to it being 'chemo-stressed' and that the colour should return in time. I'm still wearing my wig when I go out - I want it to be a bit longer before I go 'au naturel' so I'm going to leave it a while before I colour it but I'd be interested to hear how you get on colouring it!

Luckily I managed to hang on to quite a few eyelashes throughout my treatment - they did really thin out esp the bottom ones but I never completely lost them all - masacara was still on option for me. But just as I thought I'd gotten away scott free with that side effect I have thought just this last week or so that they are disappearing again!! Looks like chemo is a gift that continues to give for a while!! Luckily I'm on a Look Good Feel Better course next week so hopefully I'll pick up some tips there on what to do if they do decide to pack their bags and leave town!

Hey ho - wot joy 🤹🤹‍♀️

Take care all XX 😘😘🤗
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Re: August 2018 Chemo starters

Hi Jude,
I lost a few more eyebrows over the last couple of weeks too and lost my very last eyelash at the weekend! 😳 No sign of anything growing back yet so will have to be patient!
Take care everyone 😘
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Re: August 2018 Chemo starters

Hi Cat
Good luck with the radiotherapy, hope it all goes ok - you are nearly there.

Unfortunately my hair has come back mainly white with a few odd darker hairs so I’m thinking a wash-in type semi permanent colour - a warm golden brown, rather than a bleach.
Annoyingly I seem to be losing eyebrows again & eyelashes 😠, I’ve no bottom eyelashes at all & hardly any top eyelashes now. Has anyone else had this happen?

Take care all

Jude x
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Re: August 2018 Chemo starters

Hi Lovely Ladies,

Sue & Jo - thanks for the insurance company details. It will be so lovely to get away and relax!

Great that you are coming to the end of your radiotherapy, another tick ✅. I just found out today that my radiotherapy starts on Monday.

Jude - good news about your hair and great that you can dye it so quickly. Will that involve bleaching?

I’ve also been very positive during treatment and heard the same, that it is common to have a crash at some point post treatment. Some of my friends and family are talking about how great it will be to move on and put it behind me again but it’s not quite as simple as that is it!

Hi Dikat, I was also given a mouthwash that I tended to use only when I needed it and it worked a treat.

Bye for now. Take care everyone 😘
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Re: August 2018 Chemo starters

Thanks Sue. I will definitely give it a go x

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Re: August 2018 Chemo starters

Hi DiKat

I used Difflam 2x a day for the week after chemo and never had any problems. Can't say if this prevented it or if I would have been ok any how but probably worth using it as a preventive measure.

Good luck

Sue x
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Re: August 2018 Chemo starters

Thanks for that Jude1962. Yes I did get that prescribed once I'd started having problems. Maybe I need to use it from the start as a preventative. Will ask tomorrow x
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Re: August 2018 Chemo starters

Hi Dikat

I suffered with a sore mouth & mouth ulcers with first chemo, I told the nurses for the second chemo & they prescribed me difflam which is a mouthwash - it did help although it tastes shocking!

Good luck tomorrow 

Jude x

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Re: August 2018 Chemo starters

DiKat, Feel free to gatecrash!

sorry I can’t help you with the ice chips x

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Re: August 2018 Chemo starters

Hi everyone

I'm from Dec 2018 thread so hope you don't mind me gatecrashing. Just wondered with all of your experience if anyone used ice chips during chemo sessions to prevent mucositis. I had it really bad after my first one and ended up hospitalised with neutropenic sepsis. Have 2nd FEC tomorrow and wondered if I can take any preventative steps. 

Thanks in advance for your wisdom. Sending love xx

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Re: August 2018 Chemo starters

Hi Sue & Jo

 

I’ve been the same during diagnosis & treatment - positive, optimistic & basically just got on with it.

 

I’m now 2 weeks on from finishing radiotherapy & have had my checkup with my oncologist today  - all ok - next checkup in 3 months. I’ve also got my checkup with the surgeon at the end of the month when I’ll be advised of the date of my first mammogram post treatment. 

I’ve not had a downer as yet but am expecting one at some point...although I have had odd thoughts of recurrence 

Have to say though that the chemo is just like a bad dream now, as if it happened to someone else!

 

jude x

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Re: August 2018 Chemo starters

Hello Jo

I've just got my booster sessions to go too. So I'll be finished next week 👏👏👏😁😁.

I remember my GP telling me that often people stay strong through treatment and then crash when it's over. I'm dreading that happening to me - I've been quite strong and philosophical about this whole business that I'm just wondering if it will hit me then or if I will get away relatively mentally unscarred. I think for me the whole treating it means fighting against it and getting rid of it which I've found to be a really positive thing - I guess I'm thinking once the treatment is over you are no longer fighting it proactively - more just willing it not to recur. I'm already dreading the annual mammagrams (or rather the results from the annual mammagrams). I'm hoping to keep busy and occupied for a few months whilst I finish convalescing doing nice stuff ( holiday to Austria with my partner, a spa trip with friends) in the hope it'll keep my mind off it. And then I'll be back to work with no time to think of anything else......

I've been looking at the Nioxin stuff and will be ordering some - my hair is growing back but would be nice if it could be a little thicker - still I guess it's only 6 weeks since my last chemo so I shouldn't expect too look my old self immediately.

Have a nice day all - hope I don't bring you all down with my musings.

Sue xx
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Re: August 2018 Chemo starters

Hi Sue, 

Im hoping I’m on the final hurdle - 3 more days of my radiotherapy booster week. 

 

It is going to seem weird next week- no appts or hospital visits! Strange as well- finish the treatment and then see you again in a month at a check up.....eek scary stuff. I remember reading that some people find the end of treatment a hard thing to deal with- in some ways I will be relieved and really pleased but in other ways.....it is a daunting prospect....or is that just me!

 

Have you finished your treatment yet Sue x

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Re: August 2018 Chemo starters

Hello Jo

Are you still having treatment or have you finished now (I've lost track of who is where 😬).

Sue x
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Re: August 2018 Chemo starters

Hi all,

 

I have booked a summer holiday to France and managed to get insurance with a company called Insurance Choice. I thought it was a reasonable price and they cover my husband for his diabetes as well!

 

I got the name from the  MacMillan website. 

 

Jo x

 

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Re: August 2018 Chemo starters

Hello ladies

 

Please see below for a photo of the list of insurers I got from the cancer support center at my hospital.  This is based on feedback that has been provided over the years from other patients.  If you can't read the attachment send me a private message with an email address and I'll send it to you that way.

 

IMG_20190107_205831755.jpg

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Re: August 2018 Chemo starters

Hi Ladies - hope you are all ok

 

Cat - I’ve been using Nioxin for the last 4 weeks & my hair is coming back quite well - whether it’s from nioxin or it would be ok anyway I don’t know but I’m going to keep using it.

Unfortunately it’s mainly white but I had a patch test at the hairdressers so I’m going to have it coloured at the end of jan

 

Would appreciate any recommendations for holiday insurance

 

Jude x

 

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Re: August 2018 Chemo starters

Hi Lovely Ladies,

Following on from previous posts on the topic of Nioxin (to encourage hair growth/thickness)......

My friend who owns a hair salon went to the warehouse today and they recommended to use Nioxin after A full head of hair has grown back.

Not sure if anyone else has received different advice or has already started to use it with good results?

Take care all 😘
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Re: August 2018 Chemo starters

Hi Sue,

Thanks, that’s really helpful.
I’m planning to book a holiday for approx 4 weeks post radiotherapy although I will still be having Herceptin until October so it will be interesting to see if that will make a difference, as it may be considered continued active treatment for the purposes of insurance. I will investigate.

I hope the acupuncture session goes well.

Thanks 🤗😘
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Re: August 2018 Chemo starters

Hi Cat

I used Staysure in the summer but they won't cover me whilst I'm still undergoing radiotherapy. I did get an online quote from them though having declared my cancer (and pretending my radiotherapy was over) and I was really surprised that for an annual policy for both me and my partner it wasn't much different to what I've paid in other years. Currently everything we've booked is cancelable at no charge so if anything unexpected happens we can just cancel but I am intending to sort cover after I finish radiotherapy.

I know that the cancer support center at my hosp has a list of insurers that will cover cancer patients though I haven't yet looked at it. I'm there tomorrow for an accupuncture session to help with hot flushes so I'll try my best to remember to have a look and I'll post an update with some other companies.

Hope everyone is doing ok

Sue 😘🤗😘🤗 xx
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Re: August 2018 Chemo starters

Hi Lovely Ladies,

Hope you’re all doing well 🤗

Jo, great to hear you’ve nearly finished radiotherapy. Good luck with your last week!

Tarnia - I’ve also heard that we should wait until 6 months after chemo before dying our hair...but I also think that’s if you are using chemical dyes/bleach.

Sue - Glad to hear your hairs growing back. I’m 3 weeks post chemo (and just waiting for my radio dates) and have the tiniest bit of fluffy baby hair so far. My friend has a hair salon and she is going to pick some of the hair growth product we were talking about next time she goes to warehouse. I also had a back massage recently, so lovely...your story made me smile 😀
What company have you used for travel insurance? Anybody else any suggestions on this topic?

Take care all 🤗🤗🤗
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Re: August 2018 Chemo starters

Morning ladies

Hope everyone is doing ok. I'm partway through my radiotherapy (23 sessions in total). So far so good - I just have one slightly sunburnt boob.

My hair is also coming back looking very grey - I've been trying to pretend it's the white blond of my childhood but over the last few days I've come to the conclusion it's well and truly grey. It's still a bit like baby hair at the moment and feels quite fluffy. It's also a bit patchy in places and not quite as thick as I'd like it to be. I've been playing a game whilst sat waiting for radiotherapy looking at other women and trying to guess how many weeks post chemo they are based on hair growth. I've not had the bottle to ask any of them though just in case they are fewer weeks than me with better growth! 🤣🤣.

Has anyone tried the hair growth products we were talking about before Xmas? Any reports on them if so?

I've just had a lovely back massage courtesy of the cancer charity at my hospital. The therapist was a 6ft 4in bloke with hands the size of dinner plates that were so warm it almost felt like a hot stone massage without the stones! Unfortunately it wasn't as relaxed as it could have been as I spent the last 20 mins trying my hardest not to f@rt. Hey ho.💨🤣🤣

Have a lovely day all and enjoy your weekend what ever you are upto. We are hoping to finalise booking our summer holiday - we are self organising a trip round France and have just a few more places to book accommodation for - I really don't know how I found time to do stuff like that whilst I worked full time........

Ttfn Sue xx

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Re: August 2018 Chemo starters

Good luck with the radiotherapy. I found it so much easier than chemo just tiring as my appts were all before 9 in the morning! Most of them at 8.15 so at least I had the rest of the day without thinking about hospitals and treatment.
My hair is slowly coming back, it’s lookimg brown (which is my natural colour) but somewhat lighter than it was before the chemo.....but there are also a number of grey hairs in the mix! My hair is so fine, like baby hair and not much off it so can’t tell whether the grey or brown is winning.....time will tell x
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Re: August 2018 Chemo starters

Hi Tarnia, I'm from the Oct '17 thread and finished chemo the middle of March'18. When I saw my onc at the end of July she said it would be ok to dye my hair in Sept, so that was 6mths after the end of chemo. Don't know if you could dye it earlier if it was chemical free. Might be worth asking on some other threads if anyone knows x

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Re: August 2018 Chemo starters

 

Hi Jo

Good to hear you’ve almost finished radiotherapy without any major Se’s!

I had more surgery last week, but doing well no problems so far. Got an appointment next week to discuss my radiotherapy! Can see the light at the end of the tunnel!

My eyes have finally stopped running (5 weeks post chemo) and my taste buds are slowly returning to normal.

Hair isn’t looking too bad either although very grey 😏! Wondering how long I should leave it before dying it! I didn’t lose it all as cold capped just went very thin so had it cut really short.

 

Hope everyone else is doing well too. Take care all.

 

Tarnia 

 

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Re: August 2018 Chemo starters

Hi,

Happy New Year to you all. I hope everyone is doing ok and enjoyed the festivities.

 

I’ve finished my 3week radio sessions and just have the booster week to get through-how is everyone else getting on.

So far my SEs have been pretty good, just a bit of tenderness but nothing really to complain about.

 

jo x

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Re: August 2018 Chemo starters

Hi Lovely Ladies,
Happy New Year! 🍾🍾🍾
Here’s to a healthy 2019 for all of us.

Hi Jude, great news that you’ve finished your radiotherapy now too...another reason to celebrate 🍾

Take care, Cat 😘
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Re: August 2018 Chemo starters

Happy New Year lovely ladies. Hope you are all enjoying a good evening with family/friends and that we can all look forward to a happy and healthy 2019.

Lots of love,

Sue xx 🥂🍾🎉🍹😘🤗😘
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Re: August 2018 Chemo starters

Happy New Year to everyone, hope you are all doing ok
Jude x
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Re: August 2018 Chemo starters

Hi Cat - chill out & enjoy the break from treatment

I’ve got my last radiotherapy session on Christmas Eve - yippee!
In the last few days the area has gone pink & I've got a bit of a rash similar to prickly heat rash - but they have said my skin is looking good (even with above) & have given me some cooling dressings & suggested taking an antihistamine to help

Hope you can all enjoy Christmas without too may side effects & here’s to a healthier 2019

Jude x
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Re: August 2018 Chemo starters

Happy Christmas Eve eve everyone!!

Hope you are all feeling fit and well and looking forward to the festive season.

Have a lovely time all and enjoy.

Hugs and 😘😘😘

Sue xx