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October 2019 chemo starters

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Re: October 2019 chemo starters

As a warning, I stopped reading that book very quickly because some of the statements made me feel quite rubbish about everything and questioning some things. It may have gotten better so may be worth it but thought I would warn you. 

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Re: October 2019 chemo starters

Thanks very much ladies for the warm welcome. SHI - I’ve just ordered the book you recommended, thanks. Yes we sound very similar Claire, I’m going to give it my all, and remain positive whenever possible. I hope the rest of the week goes well for all you ladies who are already smashing your way through your chemo ❤️❤️❤️🙌🏻🙌🏻🙌🏻

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Re: October 2019 chemo starters

Thanks Kath x

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Re: October 2019 chemo starters

Good luck for tomorrow Claire. Soon be another one done and closer to the end 😊👍

kath

x

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Re: October 2019 chemo starters

Hi Grassy

i have weekly Paclitaxel plus 3 weekly Carboplatin for triple negative bc on Fridays. Just had second dose of first round. Paclitaxel alone seems to give less side effects than the two together. 
kath

x

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Re: October 2019 chemo starters

Hi Leanne a good book that helped me when diagnosed tn in June 17 was surviving triple negative breast cancer by Patricia prijatel. I was 45. Glad you’ve jumped on thread 👭👭 plenty of tips and everything as you’ve probably read already and the red one will make your wee pink for a bit after, just keep plenty of fluids flowing through you during chemo, ring your rapid response for anything, the main thing is to get through chemo safely, get your kylie gold hot pants on like us oct17 chemo thread did and 💃🏻💃🏻🕺💃🏻💃🏻🕺 your way through 😘get your look good feel better booked through your local Macmillan 👍 free makeup and tips on how to do your makeup 😁 👭we are all here ❤️💕💕shi xx

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Re: October 2019 chemo starters

That sounds familiar. I was diagnosed in July and had my lumpectomy in September. Margins and lymph nodes clear but tumour was twice the size they expected. Stage 1, grade 3. 

Just trying to keep the bugger away now. 

Youve got this though, and any day you haven't, we are here. Except tomorrow when I plan to go to bed as soon as I am home to avoid nausea and sickness!!

Good luck to everyone else for tomorrow and this week xx

 

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Re: October 2019 chemo starters

Thanks Amanda, I’m so ready to start chemo on Friday and begin the journey of kicking cancers ass 🙌🏻🙌🏻 I’m 38 married with 1 son who’s 10 and I live in the Lake District x

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Re: October 2019 chemo starters

Hi Claire, mine is FEC-T. 6 sessions 21 days apart ( 3 x fec & 3x T) followed by lumpectomy upto press. I’m going for clip/marker fitted this week, then picc line on Thursday as I have rubbish/invisible veins 😂🙈 dr assessed my cancer as stage 1, grade 3. Biopsy from my armpit we’re cancer free. Lump was around 15mm, although I feel it’s grown ( dr said it would as it’s aggressive grade 3). I found the lump on 17th September so I feel like it’s been a whirlwind xx

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Re: October 2019 chemo starters

Another FEC-T here!  2nd round on Friday all being well.. 

 

Shaving my hair tonight. 

 

Hope all goes well for you everyone this week! Sending lots of love 

 

Emma xx

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Re: October 2019 chemo starters

Good luck for tomorrow Claire!!!

 

I’m second round of FEC tomorrow all being well 🤞🏻🤞🏻

 

Let me know now how you get on. 

 

Amanda 

👩🏻‍🦲💋

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Re: October 2019 chemo starters

Hi Leanne and Grassy!! 

 

I'm er+, her2+ and on FEC-T every 3 weeks.

 Dose 2 on weds.

 

Lou xx

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Re: October 2019 chemo starters

Welcome Aboard the October boat Leanne !!!  Grab an oar !!!

 

Are you having treatment before or after surgery ? 

 

There are a couple of triple negative ladies on here who should be able to help you with any questions or concerns. 

 

Be assured tho that the treatment itself isn’t so bad, we just have to manage the side effects. No matter how big or small your worries are please contact your unit. 

 

I’m all set for my second round of FEC at 12 noon tomorrow as long as my bloods are okay. I’ve got everything crossed 🤞🏻 

 

I’ll come back on after treatment to let you know how it goes. 

 

Take care and try not to worry, you’ve this and we’ve got you !!! 👊🏻💪🏻

 

Amanda 👩🏻‍🦲💋❤️

 

 

 

 

 

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Re: October 2019 chemo starters

Hiya,

 

I'll be starting biweekly paclitaxel after my EC. Three more EC'S to go before I start. 

How are you finding it?

X

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Re: October 2019 chemo starters

Hi there, is there anyone else on weekly Paclitaxel? I started on 8th October and am just coming up to my third dose.

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Re: October 2019 chemo starters

Hi Leanne,

 

Welcome!!

That is my diagnosis too. What's your treatment plan? 

I am on my second dose of EC tomorrow. 

Claire x

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Re: October 2019 chemo starters

Hi I’m new, I start chemo next Friday 25th October. Triple negative breast cancer.

 

leanne x

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Re: October 2019 chemo starters

Thank you Shi, that’s very helpful! I don’t think you can ever be over cautious with this stuff! It’s a good tip about tracking your temp too 💕 x

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Re: October 2019 chemo starters

Jasmine you take your temperature as you like. Because I had a graph chart with each week of my cycle day by day, I tracked mine through the day and night, it was just what I found to be useful, I put on the graph when I’d taken tablets and done injection too, chemo brain fuzz can get you a bit confused. Don’t forget though not having a Temperature doesn’t mean nothing is going on, if you don’t feel right but no temp phone rapid response, if pee burns and no temp phone rapid response (I had 6 days casa nhs after first round, burning pee no temp, luckily I rang the rapid response because I was nadir and neutropenia) also any thrush, mouth or otherwise it’ll need antibiotics not over the counter cream. Thrush mouth is common during chemo ensure you get fluconzole 👍 hope this helps 💕💕shi xx

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Re: October 2019 chemo starters

Annie, I asked the oncologist how often you have to take temp, she said only if you feel unwell (not very specific!) or before you take paracetamol. Although saying that I’ve heard people have been told to take once in the morn to monitor it.. don’t think you’re a nuisance, they’d rather you let them know than sit at home and worry XX 

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Re: October 2019 chemo starters

Lovely to see so much positivity on here. You ladies are rocking fundraising, awareness and hairloss!!  

My injections are nivestim. I had the searing bone pain in my jaw and back. It’s still lingering but my god. It was like early labour pain 😩

 

is anyone else constantly taking their temperature 🤒? I’m getting through those covers like no ones business!! And my ears differ quite a bit in range. 

I think I have spoken to the unit at least once a day since I started. I feel like im being a nuisance. But I’ve ended up in a and e twice already. It’s going to be a long 6 months ...

 

it’s good to see some smiling faces on here xxx

 

annie

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Re: October 2019 chemo starters

Good to hear pain passed now Emma. So sorry it was horrid!

And AJ you look brilliant- go you!

Had second of my weekly chemo yesterday- just the taxil this time and I feel pretty fine. Must be the Carboplatin that caused some of the unpleasant effects and that’s only once every three weeks so I feel it’s a bit more manageable than i first feared. Genuinely the waiting to be treated bit was the worst time.

wish you all a happy weekend 

love

Kath

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Re: October 2019 chemo starters

You look amazing with no hair!! Well done!! 

 

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Re: October 2019 chemo starters

Emma

 

Theres still time to do a fundraiser.  All of October is Breast Cancer Awareness month !  

 

I went straight in for a Grade 0 - no messing about !! 

 

I think it can add pics. Let’s try ...

Hubby and IHubby and I

 

Me wearing ‘Frenchie’Me wearing ‘Frenchie’

 

BB6C59FE-02A7-46DE-9C91-276FBC23F7D2.jpeg

 

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Re: October 2019 chemo starters

Hello ladies! 

Very well done on your successful head shave!  Brilliant of you to turn it around into a positive and raise money and awareness! ❤️

 

I'm thinking I will have to shave mine later today.  I'm shedding lots now.  Did you just do a grade 4? 

 

I'm excited and nervous. I'm kicking myself that I didn't turn it into a fundraiser like you! 

 

I believe my injections were called Zarzio?! 

I didn't have a problem with them until the last one.  The following early hours I was in so much pain in my lower back.  I've never experienced anything like it.  It was such a deep painful throb!  I had to have a hot water bottle and some paracetamol.  That helped.  Then the next day it was gone and I've been fine since?! 

 

Emma x

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Re: October 2019 chemo starters

That's amazing AJ72, what a fundraising result!! Glad your buzzing about your baldness. Have you felt rain on it yet? Very curious sensation!!

 

I found shaving it off very liberating. My daughter had two lovrly little girls over to play yesterday. When I took my hat off in the car they stared hard and one, in the earnest way kids do, said " people will see you, you could get a wig". The other thought hard and said "you look better with hair". Bless them. I think I probably do look better with hair!! But I'm good without it, and I'm good not looking my best. Because I'm alive! And I'm enough just as I am.

 

That said, I was rather inspired seeing Tilda Swinton looking bald and beautiful in Marvel's Endgame. I thought I might embrace the look and dress up as a wizard for 6 months. The kids didnt think it was such a good idea!! 🙄🤣

 

I had no pain with injections but was warned of very bad bone pain. Call the helpline though, just in case, and to get pain relief.

 

And I dont think we can share photos on here, which is a shame but I guess it's a bit public. We would have to move onto whatsapp/facebook for that. 

 

 

 

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Re: October 2019 chemo starters

OMG ladies - head shave done and a massive success. £403 raised on the night and currently £200 on our Just Giving page.   Absolutely overwhelmed by the support of my friends.😊❤️

 

Had a fantastic evening and my hubby shaved his head too 👩🏻‍🦲👨🏻‍🦲

 

Spoke to loads of ladies (and men) about checking themselves regularly, which was my main aim of the evening, so success all round. 

 

Absolutely buzzing and being bald is bloody great. I love it !!!!!  Embrace it  ladies, we are all beautiful 💋💋💋

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Re: October 2019 chemo starters

Hi AJ

i had no pain with injections and that doesn’t sound right. Do give your emergency number a call!

love

Kath

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Re: October 2019 chemo starters

Which injection? The immune booster? 

I was ok with mine but I would call the unit to make sure. 

I hope it feels better soon x

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Re: October 2019 chemo starters

That sounds amazing - good for you! 💕

has anyone else had searing pain after their injections. I’ve taken my last one and I feel like I’ve been hit by a train. Searing pain in my jaws and back

 

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Re: October 2019 chemo starters

Hi ladies 

 

My venue is all decorated ready. I’m shedding like a shaggy sheepdog so can’t wait to get rid of my hair now. Head shave at 10pm tonight after an evening with friends and family for drinks, laughs and raising awareness. My kids (18&16) are having a go with the clippers too and can’t wait ! 

 

I called into my work today and they are taking part in Wear it Pink and had raised over £100 in support !!! Also I called into a Currys today wearing a slogan T-shirt and pink tutu and one of the salesmen gave me £5 for the cause!!!!

 

Does anyone know if we can add pics on here ? 

 

Amanda 

👩🏼✂️👩🏻‍🦲😀

 

 

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Re: October 2019 chemo starters

Apparently there are some brilliant adhesive ones!! My hair lady said she uses them and she has alopecia. Hypoallergenic too! I'll see if I can find out the name. 

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Re: October 2019 chemo starters

ClaireL 

 

I would love to have my eyebrows done but just cant afford it.  

I've asked some of the mums at school to check my eyebrows when I start to pencil them on to make sure they are in the right place..!! 🤣

My wig lady told me it would be the 18th that my hair would start and she was spot on!  

It's my eyelashes falling out that is scaring me sightly.  Does anyone know if you can use any falsies or are there specific ones? 

 

xx

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Re: October 2019 chemo starters

Hi all,

 

Just had bloods ready for second go on Monday so spending this weekend with my family. Baking with the little one with puddle stomping and playing trains 🙂 

 

How was the headshave today??

 

I'm a bit behind you guys but am expecting the hair loss from next week. Eyebrows have healed nicely so at least I won't look like an egg!!! 

 

Have a great weekend everyone. X

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Re: October 2019 chemo starters

Hi all

i am on the second of my once weekly today. So probably sleeping most of the weekend 😝

Take it easy everyone. 
kath

x

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Re: October 2019 chemo starters

I LOVE boxing!  It's such a tonic after a rubbish day. I wanted to go this week but I've had a stinking cold. Hopefully next week..

Well done on 15 mins!  That's amazing! 💪💪

Do you still have a PICC?  It doesn't bother you whilst punching? 

 

I'm planning on taking the little ones out this weekend too.  Mine all starts again next Friday.  I know you are a couple of days before me so I knew my hair would start very soon after seeing yours had started. 

I will see how much falls out after a shower later to determine when I will shave it?! 

I will get the kids involved too ☺️ 

 

This all really sucks but it makes the special moments even more special!! ❤️

 

Enjoy every moment of your weekend 🥰 

 

Em xx

 

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Re: October 2019 chemo starters

Hi Emma, 

 

Another martial arts fan eh? Nothing like punching something really hard for stress relief eh?! I managed 15 mins today 💪💪🤣

 

Mine started falling out on weds, so I got the kids (8&10) to shave it with clippers. It was actually quite fun. They shaved me a silly style first. I wasnt sure how I would feel but actually I'm ok with it. Except I just walked out in the rain and the feeling was very odd! 🤣🤣

 

This weekend is my 'good' one before it all starts again next weds. So I've devoted it to making sure my family have a really good time. Playdates and sleepovers for the kids, and I've shipped the parents in laws in so my husband can go to a really exciting martial arts event. Seeing them all happy will make me very happy. And I think I will do some cooking cos that makes me happy too. 

 

What's everyone else up to...? 

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Re: October 2019 chemo starters

Amazing idea with the kickboxing!!  I go to box fit and I didn't know how id be feeling..  I've had a stinking cold this week so I did go but I'm hoping to go next week! 

 

How is everyone?  

My hair has started to fall out today.  I wasn't sure how I'd feel about it but yes, I'm a little freaked!  I'm enjoying having short hair again and quite like how it is at the moment but nope.....I will have to shave it before I look like a carrot half scrope (as my mum would say) 😁

I keep catching my 5 year old little man looking at my hair.  I think he thinks it's going happen all of a sudden.  Bit like a Christmas tree. Shake me too hard and it will all fall out like pines off the tree!! 🤣🤣

 

This time next week I will be on my second treatment.  Am I allowed to ask for stronger anti sickness meds?  

 

Does anyone have anything exciting planned for this weekend? 

Emma x

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Re: October 2019 chemo starters

Purple trunks, that’s good that they don’t hurt too much, and I have heard side effects can be quite painful.

i find uti’s very sneaky, often lingering for a while before showing symptoms. I’m glad you got checked out though and you’re feeling better! 
my mum actually started her period the day on treatment (before). She was thinking It may be her last due to the same thing (she’s 45). 
that’s an amazing idea about the kickboxing, looking forward to hearing more about that! X

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Re: October 2019 chemo starters

Evening!

 

@jasmine I had the injections. They prick slightly but dont hurt as long as you plunge very slowly. I really hated doing it though. And I had side effects, but I'm generally sensitive to medication. 

 

I am due on this week and have had a tiny bit of spotting but consistency and volume are different. I'm watching for a few days before getting it checked out. 41, so expecting medical menopause. 

 

Two trips to the chemo helpline this week. Sat because I had a uti and then a sore throat.. they discovered I was severly neutrapenic.. 0.09!! That was terrifying, but all has been fine. Weds I was back in because I have a red rash appear.. they weren't too worried but I was thrilled that my nutrafil were already back up to 0.7. So still neutrapenic but going in the right direction!!

 

This week I have been to yoga at Maggie's and today I managed 10 minutes kickboxing... that's a result as I'm still pretty weak!!! My husband owns a martial arts club and we have decided to start a free weekly 'kick cancer' session for anyone affected by cancer. It's very good for physical and mental health and it's really hard to find aerobic excersise that's suitable for cancer patients. Idea is to let those whosoever ones have cancer come too. No doubt ( one of my professions is a fundraising consultsnt) I will squeeze some fundraising off the back of it too... maybe a kickathon of some sorts. 

 

Anyway, this is my 'good' week before round two next week. So I'm trying to do normal things! 

 

Oh and my head hair is coming out now... really hope the lady shaving her head keeps the thick blonde hair until the shave... good luck.. you have my full respect for making that so public!! 

 

Xxx

 

 

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Re: October 2019 chemo starters

Evening!

 

@jasmine I had the injections. They prick slightly but dont hurt as long as you plunge very slowly. I really hated doing it though. And I had side effects, but I'm generally sensitive to medication. 

 

I am due on this week and have had a tiny bit of spotting but consistency and volume are different. I'm watching for a few days before getting it checked out. 41, so expecting medical menopause. 

 

Two trips to the chemo helpline this week. Sat because I had a uti and then a sore throat.. they discovered I was severly neutrapenic.. 0.09!! That was terrifying, but all has been fine. Weds I was back in because I have a red rash appear.. they weren't too worried but I was thrilled that my nutrafil were already back up to 0.7. So still neutrapenic but going in the right direction!!

 

This week I have been to yoga at Maggie's and today I managed 10 minutes kickboxing... that's a result as I'm still pretty weak!!! My husband owns a martial arts club and we have decided to start a free weekly 'kick cancer' session for anyone affected by cancer. It's very good for physical and mental health and it's really hard to find aerobic excersise that's suitable for cancer patients. Idea is to let those whosoever ones have cancer come too. No doubt ( one of my professions is a fundraising consultsnt) I will squeeze some fundraising off the back of it too... maybe a kickathon of some sorts. 

 

Anyway, this is my 'good' week before round two next week. So I'm trying to do normal things! 

 

Oh and my head hair is coming out now...

 

Xxx

 

 

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Re: October 2019 chemo starters

I've gone the other way I think. I'm expecting mine any day but no sign yet. I have bloods tomorrow so will mention it then. 

 

Good luck for the head shave tomorrow!! 

 

Claire x

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Re: October 2019 chemo starters

Sorry AJ i am post menopause so haven’t paid any attention to this issue! Hope you have a good oncology nurse you can ask?

kath

x

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Re: October 2019 chemo starters

I think I read somewhere that they can be affected and that some in between spotting is possible. Bleeding and bruising is a possible side effect though so probably best to check with your hotline. 

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Re: October 2019 chemo starters

Hi all

 

random question-has anyone else’s periods been affected? I am not due and was expecting everything to stop but I seem to be evidencing there start of something?! Sorry if this is tmi xx

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Re: October 2019 chemo starters

Thank you Kath.

glad you got it looked at and good news about the port (I have heard good things) 

that’s good about the injections, my mum was hoping she could do them herself 💪 

hope everyone is keeping strong x

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Re: October 2019 chemo starters

Hi all

so pleased things went well for your mum Jasmine 🎉.

 I had the injections for 3 days and they were fine. Very easy to do yourself too, which was a relief. 
saw a nurse today who thinks my arm has phlebitis as a reaction to Taxil in the vein. Going to look into having a port.

love to all

Kath

x

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Re: October 2019 chemo starters

Hi Kath,

 

The lorazepam worked well so she was able to have treatment yesterday (herceptin and docetaxol). We were in from 9-5pm with monitoring as it was her first one. She slept mostly and felt fine. Bit of heartburn when she got home but think that was the roll she had laying down! 
slightly bloody nose today and altered taste to water etc but other than that successful first treatment. We got given the injections to start on Sunday - what’s everyone’s exp with these? (Sorry can’t remember what they’re called but they’re for white blood cell count)

 

Kath does your arm feel hot? I would ring the unit just to make sure it’s not the start of an infection or something, I’m sure it’s fine but it’s best to double check. 

x

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Re: October 2019 chemo starters

Looks like on the whole everyone is doing OK this month. Hoping I can report the same next week. 

 

Does anyone take baked goods into the ward with them? First session tomorrow and needing some distraction so thought making up  batch of ginger oaty crunch might be good. Don't want to leave it all at home though as then I'll eat it all! 

 

Think I'm all set to get started. Had an Echo today to baseline my heart as epirubicin has previous when it comes to heart damage. Yikes! At least they found one and it seems it's pumping fine. 

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Re: October 2019 chemo starters

Just a quick note to remind anyone with concerns (no matter how small) to contact their unit.

 

One of my side effects (and I have been very lucky) has been a dry/tickly throat and cough which is 100% worse at night leading to separate bedrooms, aching ribs and many sleepless nights. My unit were great advising throat lozenges and lots of water. Sadly this didn't help

much. 

 

I visited my GP on Tuesday simply to get my chest checked for my own peace of mind. My chest was clear however as a precaution he prescribed antibiotics and asked that I update my unit.  This I did and they asked I pop in just to get checked out. So bloods were taken and it turned out that on Day 17 I was neutropenic even though I felt absolutely fine  (other than the damn cough) and didn’t have a chest infection.  Antibiotics (as a precaution) and cough linctus prescribed.  As I felt okay and had no other symptoms I was allowed to go home on the understanding I returned the following day for further blood tests. This I did yesterday afternoon and again returned home. I received a call later that evening to say my bloods were ‘going the right way’ and ‘not to worry’. 

 

Hoping all should be good for bloods tomorrow then Round 2 on Monday 🤞🏻🤞🏻 

 

Moral of the story is that you may feel okay on the outside but be vigilant of what’s going on on the inside. 

 

On a lighter note, my hair is starting to ‘thin’ out but luckily being blonde I’ve lots to spare.  Trying to wash, dry and brush hair lightly so as not to turn up bald to my head shave tomorrow evening - that would be embarrassing 🤣🤣

 

Take care and stay well ladies 💋