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November 2019 Chemo Starters

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Re: November 2019 Chemo Starters

Hi All

I missed a day and am overwhelmed with messages! I think we are all going through a deep trauma and we look for control where we can. It is at times petrifying and I was crying going to the chemo ward... Or Chemo Land as we call it. The reality was better than my fears. Lots of fellow cancer warriors!! My control has been a number 3 buzz cut like VivMc. I like it..but I know a lot of fab short haired women. My partner says I look like a young boy with boobs (we have been together since we were 16 so there is alot of banter). I have also become obsessed with researching tattoos to cover my nippleless mastectomied breast...just because I want some control back. Luckily I have years before I can ever get one so no snap decisions ie my children's faces 😂

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Re: November 2019 Chemo Starters

Thanks for the tip! I deleted all my social media because I was getting really upset about seeing everyone and their (outwardly) happy lives, but that's a really good tip to know and I'll make sure I do that, thank you x

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Re: November 2019 Chemo Starters

If you join the Paxman cooling Facebook group you will see lots of photos of ladies before and after treatment and many mid treatment- some of them appear to tie a scarf on top of the outer cap ( done up under the chin like the Queen) to maintain the pressure on the crown connection as that is when the cap connection is generally weakest and it is where most thinning happens 

whatever happens keep capping as it protects follicles and helps with regrowth

good luck 

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Re: November 2019 Chemo Starters

Yep bought the paxman complete kit as well as baby hair detangling spray, detangling combs etc. Prepared to wash hair once a week, not going to use any heat on it, cool water when washing it etc. Literally obsessed over the proper way to care for it with scalp cooling because I'm a huge huge control freak and it's the absolute terror of the unknown and uncontrollable that's getting to me. Despite everything I do, it could still all fall out. I'm going to make sure that cap is as tight as possible on Wednesday! X

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Re: November 2019 Chemo Starters

Hi Vaneysha

 

FEC is like EC but with an extra drug - it’s the E that affects the hair so it would be the same for both of us.  I am not on paclitaxel so can’t comment on that but it’s the same family as Docetaxil so I guess has similarities. It is really hard - I don’t think the contact with my scalp was close enough for the first session as my hair loss was patchy - I lost more than 40% - nearer 80% eventually probably and it was soul destroying so worth making sure it’s as tight as you can tolerate. 

The unit are excellent about it and make sure I have everything I need for the prolonged time I am in there as it does add to the time. Have you read on here about shampoo and leave in conditioner?  Worth doing a search about how to care for your hair which is different to normal. There are loads of recommendations including combs etc. 

What I would say is, don’t give up - even if you lose hair I was told it helps with regrowth which it seems to have done in my case!  x

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Re: November 2019 Chemo Starters

Dear Wolvesgirl

 

Thank you so much for your message. I'm not really very familiar with the different types of chemo so I'm trying to compare your treatment to mine but don't really understand it - although every situation with the scalp cooling is unique I know. Im happy to put up with the extra time and any discomfort it'll bring, what I'm worried about is giving myself hope for it to be destroyed. Is FEC the same as EC? I have that for 4 sessions then paclitaxel for 12 sessions. Would I know fairly early on if I'm likely to keep my hair? I can certainly afford to lose some, just not all of it... I've just tried my wig on to try and calm me down (that plus two diazepam as was on verge of panic attack) it looks "normal" but I just know how fragile my self esteem already is and I just feel like I'll be less of a person without my hair. Very pathetic to think of it that way I know but I'm just trying to prepare myself. Eyebrows and eyelashes I can handle, never had much in the way of eyelashes anyway and I've been a winged eyeliner wearer for years, and can draw eyebrows on... But hair is my whole thing. I can't believe yours started growing back - so if i lost loads of hair on scalp cooling would I just carry on using it anyway and it could help hair grow back even on chemo or am I misreading? Xx

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Re: November 2019 Chemo Starters

Thank you, that's really positive. I have really thick hair and I'm worried the cap won't reach my scalp properly, I could easily afford to lose 40% of my hair but I know it's different for each person how much they lose. I only wash my hair once a week because it's so thick so thick so I can handle that. Really needed to hear experiences like yours, thank you x

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Re: November 2019 Chemo Starters

Dear Vaneysha

 

I have read through your posts and can identify with so much of what you describe.  I am from the August 2019 group who are fab and I cannot tell you how supportive I have found this forum.  I really just wanted to respond about the cold cap.  I am nearly twice your age but have always had thick hair which so far had not got any grey in it.  Along with all the anger and fear that the diagnosis brought with it my main issue was losing my hair.  I know it sounds odd but I totally get where you are coming from with it, even at my age.

 

I too, am fiercely independent and do not want many people to know about the diagnosis - I can't bear the pity which is an issue for me I know!  I have some close friends who have supported me through this and my husband who has been amazing.

 

Anyway, the cold cap - give it a go.  I have found it completely manageable.  I did lose quite a lot of my hair after the first cycle and do need to wear a wig (more later) but - I have not finished chemo yet (I am on FEC-T) so have had three FEC and two docetaxel (one more to go) - it is growing back.  I am hoping that the docetaxel doesn't make the new growth fall out but it is looking hopeful so fingers crossed.  Try anything that might make you feel better.  

 

The wig - I can't tell you how many people have said how nice my hair looks!  I was a bit disappointed really as I always thought that my own looked better but apparently not.  If I am being honest I don't think people are that observant - they see you with hair and thats it.  

 

I hope all goes well for you - you have a lot on your plate at the moment and it must all seem so hard.  

 

Kindest regards

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Re: November 2019 Chemo Starters

Cold capping isn't painful , uncomfortable or that cold after the first 10 mins  ,take a panadol 30 mins before if you are concerned, it's perfectly doable but adds time and above all helps protect the follicles

I had 15 sessions of chemo and probably lost 40% but no bald spots ( it stopped shedding after the Fec and was regrowing during taxol)

I had more difficulty with going from being a daily washer to a once a weeker so had a hairpiece that I could wear for going out if my hair was a disgusting mess underneath

Read the Paxman site , join the Paxman group on facebook

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Re: November 2019 Chemo Starters

twinklestar, just wanted to send you a hug.

crying is good I think - sometimes I feel like I’m coping but other times I want to sob my heart out, or scream, but somehow I can’t even cry - I’m just so scared of it all.

I feel for you re. the childcare. I’m lucky mine are a bit older at 12 (twins) and 16, but they still need driving places and much as my friends all want to help it is hard to keep asking.

Lisa x

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Re: November 2019 Chemo Starters

Thank you xx

I have bought a wig, it's home, hidden in a cupboard for now. Cost a fortune, cried when they put it on me, in my head I was just thinking WIG WIG WIG. It looks OK but it's still a wig and I really, really don't want to need it. I'm scared of one of my kids yanking it in public and stuff. I'm scared of the frustrating amount of time it'll take for my hair to grow back and look normal. I'm scared of the first time I shower and the hair falls out. And my husband's reaction to his bald egg wife. And my older two children saying something or getting upset about it. It's just something I never expected to have to think about at 33 and I'm so, so angry about that. 

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Re: November 2019 Chemo Starters

Gosh Vaneysha- it sounds like you have a lot going on. Bless you xxx Maybe look into a few different style wigs - just in case? There seems to be some really natural looking ones out there. One day at a time xx

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Re: November 2019 Chemo Starters

Hi

I asked for another oncologist but the breast nurse said she was even worse than the one I had. No empathy and terrible bedside manner. Talked to me like I was some sort of dimwit instead of a professional woman with 2 degrees. It feels like a one size fits all attitude with no concern about the individual and other health problems. I feel like running away, not doable I know but it consumes your day and night. Nightmare. X

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Re: November 2019 Chemo Starters

That is awful particularly about your oncologist. I've been a total pain and emailed an essay of questions (was more like an anxiety vomit) not been answered yet but I will persist. You should too. I'm really sorry about your predicament. Conveyor belt sounds right. Having chemo increases my prognosis by a poxy 11% and I'm wondering if it's even worth it. But I have accepted I owe it to my girls and husband to try. And I'm either all in or all out. So as much as I despise every single second of what's to come (and it's a lot) I'm doing it, but not because I want to. I really really hope you can get your questions answered - can you ask for another oncologist? 

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Re: November 2019 Chemo Starters

Hi

yes I have seen the GP and he has given me anti depressants but they give me nausea. I will have to persevere through till they work I guess. I have not been sleeping or eating and at times I feel that I’m losing my mind! I even rang the Samaritans one night at 3am just for someone to talk to. It’s not that I feel like harming myself, was just desperate. I’m not sure I will have the chemo, I’m a lot older though and I want quality of life. I feel bullied into treatment and it seems like a conveyor belt approach. My oncologist was awful and wouldn’t answer any of my questions so left floundering in the dark. I also have other health problems that will be exacerbated with chemo. Awful awful dilemma x

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Re: November 2019 Chemo Starters

Hi Louie604

 

Right there with you with the emotional side. Currently on 4 different drugs just for my mood - I went suicidal after diagnosis. I refused to even consider chemo when they said I had to have it, and tbh I'm still doubting it now and I have to get a port put in tomorrow (kicked up a rigut fuss about that too, dreading it).

If you haven't already spoken to your gp about the mental health side then definitely do - anti depressants etc don't fix the problem but they are helping me push through. It's a long long road ahead and that's the part I'm struggling with most of all. Diagnosis out of thin air and strangers telling you they need to completely butcher you from the inside out to make you "better" when the cancer never even made you feel ill but the treatment will. It's just so unfair. X

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Re: November 2019 Chemo Starters

Hi 

I know exactly how you feel. My mental health has deteriorated since diagnosis and I am struggling with it all. I live alone but have adult children around but they have their own families to care for. I will have my operation soon and the team want me to have chemo afterwards but I am on the fence at the moment. I just want to say I feel for you as it’s awful and a long journey.  I wish I was braver than I am but it’s terrifying to say the least . 
sending support and hugs 🤗 x

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Re: November 2019 Chemo Starters

Even with my husband being around, childcare is a challenge (we have a 3, 2 and 6 month old) as we don't want them running around during hosp appts etc and we don't have much other family nearby who can help so it means I'm going to have to do chemo alone (I've pulled shutters down on friends as can't bear them to see me being so vulnerable...i am so fiercely proud and hate the thought of looking like a victim) I totally get it, I'm really independent too so it's horrible having to ask for help.

I've gone the other way and barely eating since diagnosis (which was on my bloody birthday) I used to have anorexia many years ago and it's been hugely triggered. I'm a healthy weight these days but lost 12kg in a few months through stress and I'm worried the effect that will have on my treatment. This is such an ugly disease - the treatment more than anything - regardless of who we are, the impact on how we look can have huge repercussions on how we handle what we have to put up with. I'm petrified of all of it. 

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Re: November 2019 Chemo Starters

I too have had my surgery. Had a wee cry yesterday as already feel unattractive- already felt ugh due to weight gain from general pig out/growing older and caring/not caring on repeat about weight! I’m not huuuge (size 16), but I’ve always been a size 10 even after kids - now 9 and 7. Now I have boobs that are approx 7-8 cup sizes different, one without a nipple - and the prospect of being heavier than I want, wonky boobs AND bald is horrible. Eventually my surgeon will do a breast reduction on my remaining boob - but it’s going to be a long ride. 
Very jealous you have a husband who works from home. Childcare has been a major stress for me as parents don’t live near and also work, so relying on friends, which is hard as I’m fiercely independent x Hope the cold cap works for you - let us know xx

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Re: November 2019 Chemo Starters

Hi Vaneysha,

I’m sorry I can’t help with advice re. cold cap; I hope someone else might be able to help there. My chemo is starting Friday, but I won’t be having a cold cap.

My mum had chemo and lost her hair, but she bought a wig very similar to her own style and you genuinely would never have known it wasn’t her real hair, so that’s an option if the cold cap isn’t as successful as you hope. She said she enjoyed not having to wash and style her hair for a while! Her hair grew back quickly after the treatment and it was actually nice to see her with different styles as it was growing out - she really suited a pixie crop, though she did grow it longer again.

I really hope you keep your hair; I know the cold cap works for a lot of people so fingers crossed.

Lisa x

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Re: November 2019 Chemo Starters

I’ve used the cold cap for my first three weekly sessions and honestly it’s completely doable!  I make herbal tea to drink and have warm scarves and clothes and just listen to guided meditations while I have the gloves on and read when my hands are free.  I had quite long hair as well and cut it to just above shoulders to make it easier to manage with the cap and also just in case it does all fall out.  

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Re: November 2019 Chemo Starters

Hi Vaneysha and Twinklestar, 

I had my hair cut down to a no3 the day before Chemo, opted out of cold cap and now on Day 16 I notice lots of little hair on my pillow and in the shower. So didn't take long to start the shed..Till I was in my 30's I had short hair so don't feel it as much as you guys but psychologically I think it's def just that final thing that says 'I have cancer'. Had some dark moments this morning.

I too teach at a secondary school Twinklestar but will have to be off for at least a year as am same as Vaneysha, HER +, and stuck with Herceptin for 18 cycles after initial chemo, so immune system scuppered for a while.

Hope you get wigs, hair sorted and just remember you are beautiful whatever ❤.

Xx

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Re: November 2019 Chemo Starters

I feel like a brat but I'm in a fortunate position where I don't have to work and my husband is able to work from home indefinitely (but primarily look after the kids). I'm also very lucky to be able to get my treatment at a BMI so even though the treatment is all the same and I will still feel just as crap as anybody else, I have some options with getting good cold cap help from nurses etc. I will definitely be able to handle the pain the cold cap might bring but I just want to know if it's even worth having hope for doing it especially as I'll have to have it for 16 sessions.

 

I also had very long hair up until 3 days ago when I had it cut into a long bob. I thought it would upset me but it didn't and in fact I love it which makes the prospect of it all falling out even more upsetting. I'm just not a hats and headscarves kind of person. I'm really vain and I know it's arbitrary compared to our health but it really matters. My mental health has plummeted since my diagnosis and at the moment hair loss is on par with the fear of the cancer coming back. I just can't believe I have to deal with this. Still in that disbelief stage that I even have (had? They got rid of the tumour already so I don't even think I have cancer now???) cancer at all. 

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Re: November 2019 Chemo Starters

Vanesha- I don’t have any answers...!

But I am also worried. I went from saying -and really believing - I didn’t care about the hair as I just want to put health first. However, with chemo a real possibility for me now, surprise, surprise I find it actually does concern me! I found this Youtube video which I found fascinating looking at the difference even a week makes post chemo. 
Are you looking to return to work? I’m concerned I’ll be desperate to get back to work at the end of it all as the £££££ will be in a dire state! I’m a teacher - so even though I doubt I’ll go straight back to the classroom, I’ll still be walking round the kids (secondary- so teenagers LOOK at the weird person with a gypsy headscarf ensemble! 😩)

 

https://youtu.be/RDgqqSZhzRE

 

My oncologist spoke about the cold cap. I spoke to someone who tried it - only managed one time they said it was really really uncomfortable- but everyone is different. I don’t think it’s for me. 6 months ago I had super long hair - but had a few chops for a change of look. Had highlight as well as a treat to start to disguise my sneaky greys (kind hairdresser calls them sparkles!). I no have a chin length bob of lovely hair I will miss a lot 😔 If I am having chemo (find out on 25th and will start 27) I’m doing to get the shortest pixie cut possible. I don’t feel able to shave it 😔 Good luck x

 

 

 

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Re: November 2019 Chemo Starters

Hi

Starting EC chemo x 4 every 2 weeks on Wednesday, then taxol x 12 every week followed by hercpetin every 3 weeks for...ages, can't remember how long, I struggle to even listen to what they're telling me. 

I'm so, so scared. I'm in my early 30s with very young kids and it's the hair in particular I'm so upset at losing. I have a wig on standby and I will be trying the Paxman cold cap but it just seems like the amount of Chemo I'm getting means total hair loss is guaranteed isn't it? Really just want some hope that I might keep my hair if anyone has any positive comments. I can even handle hair actually falling out and being bald during the treatment but it's the time it'll take to grow back afterwards that really upsets me. I really want to keep my hair 😔

I have stage 2 IDC grade 3 HER+ and ER+. Didnt spread to lymph nodes. 

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Re: November 2019 Chemo Starters

Glad to hear you are feeling ok Helen 🙂

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Re: November 2019 Chemo Starters

Great news that it went smoothly Helen despite the really long delay...that is really rubbish regarding the 2 chemo wards, always amazes me how the nurses and staff keep going and juggle everyone and everything...

Looking forward to your crochet efforts, I feel like I need to take up a hobby.

I have bought journals to write stories for my kids. I have meant to do it for years so guess now's a good a time as any...although now what you mean, my words are jumbled for at least a week after Chemo!!

Hope everyone is having a good weekend.

Xx

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Re: November 2019 Chemo Starters

Hi All

 

First treatment down...feeling much better than I thought.

I was meant to start at 1.45..but started in the chair nearly 3 hours later, finished at 7ish. Apparently the nurses call it Black Friday as there are alot of people with complicated and long regimens who come every three weeks on a Friday! Also our hospital is now having to serve two extra inner city hospitals who have closed their chemo wards...I won't say anything political..... They were multitasking like crazy but still managed to be cheerful and informative. The good side of waiting was the chatting and comaradery between everyone....My anxiety melted away. The only think is I got a slight sting with the E when it went in but that may have been from the freshly sterilised PICC.

 

I feel a bit spacey and lacking in appetite. No nausea so far. I fed the dog twice (she isn't complaining!), and have been doing lots of word switching and weird spellings..this must be the start of chemo brain...

 

So I totally understand why foot could look like front...lucky Mini the rabbit to be named twice !!! You are very skilful Debs...I am crocheting some Christmas presents this year..but I am , by comparison, a bit basic !!

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Re: November 2019 Chemo Starters

Great to hear your 1st one went well Nhlanhla, can't believe you had an exam. 

And love the rabbit Debknits!!

Xx

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Re: November 2019 Chemo Starters

Yes, forgot to say thank you for your positive messages and thoughts mini mad, always good to hearfrom someone who has come out the other side. I guess there are so many side ffects we don't think about but happy you are doing well and have hair 😊

Xx

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Re: November 2019 Chemo Starters

Hi Nhlanhla,

Glad to hear it went ok, hope you had a good day and fingers crossed for the rest of your cycle. 

What exam are you doing?

Lisa x

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Re: November 2019 Chemo Starters

Ouch Debs, that doesn’t sound nice... I hope it gets better soon!

I love your Mini bunny x

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Re: November 2019 Chemo Starters

Mini mad - loved your update and yay for all the things that are growing back and healing.  It’s super inspiring to hear.  

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Re: November 2019 Chemo Starters

I had the warm bag too, in fact I had two lol. as they were running behind. 

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Re: November 2019 Chemo Starters

Mini the rabbitMini the rabbit

I popped this in the post this morning. Customer asked for the name MINI to be embroidered on the front: I read it three times as “foot “

lol

Gladly customer understood  my mixed up brain and was happy with the results 

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Re: November 2019 Chemo Starters

Hello Debs,

There are so many little things that you wouldn't think about! Glad it's nothing serious. I just can't believe how woozy I am by the end of the day, Onc told me it was fatigue and just to rest. What am I going to be like after 8 cycles of chemo..a zombie no doubt, ha ha.

Glad it's not just me having cannula. I get a hot bag on it for about an hour on my hand to get ny veins up while my premed antisickness get to work so quite pleasant...

Have you knitted anything recently?

My mum came up from London and bought me about  different hats to wear 😂.

Xx

 

 

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Re: November 2019 Chemo Starters

Hi Viv

i get my 2nd on 27th so you’re a week ahead of me. 
I had a cannula too.

 

had to phone the team this morning for advice. I have a swelling in front of my ear sling the jawbone, very painful too. Temperature normal. 

They were not concerned at all. Said blocked salivary glands are quite common and as long as temp remains normal and I can swallow, not to worry. 
warm compress. Massage, drinks and paracetamol. And call back if it gets worse or temperature changes. 

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Re: November 2019 Chemo Starters

Hi nmm,

 

im from the june 2019 chemo posts and i am now nearly 3 months post treatment.

the time actually went quite quickly.

i had Triple Negative bc ( twice in 2 years ) Paclitaxel once every week for 12 weeksand Carboplatin once a week,  every 3 weeks.  Oh and also Filgrastim tummy injctions and now Zoladronic acid iv every 6 months for next 2 years.

 

i have a full head of hair albeit short,  my eyebrows have returned 👍 and my eyelashes are slowly growing 👍👍👍

i am still tired but not as much ,  pains still in my legs but again not bad like before.

still have tingly toes and ocassionally i get slight numbness around my left eye and cheek.

i have my 3 month check up with my chemo dr next week and will mention this but the side effects i guess while last for a while yet but i cant really complain,  compared to others on here.

so keep going ladies,  there is an end to all this..... one day at a time.

mini mad xx 💖💖

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Re: November 2019 Chemo Starters

Morning sisters, I also went for my 1st chemo yesterday.EC. The whole process wasn't as scary as I had anticipated. I had a headache and took Panado. I actually slept well except for my mouth feeling dry so I drank water and chew minty gums. It's the morning and I feel ok still. Wanted to go write my exam but don't want to risk catching something so I'll just walk, have breakfast and relax. 

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Re: November 2019 Chemo Starters

Hi Chris,

A journal us def a good idea. I had good intentions and my journal is blank...

Am going to attempt to fill it in tomorrow!! My mum has come to visit and is talking so much I may not have any peace to do it..

Keep that anxiety in check, it gets all of us. I got anxious today because I ate ham that had been open in the fridge for 2 days and then convinced myself it would make me ill. Seriously. Anytime my kids cough or sneeze I'm like, are you ill? Think it will get better.

Keep deep breathing...

Sending lots of happy thoughts

Xx

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Re: November 2019 Chemo Starters

Evening ladies, 

Welcome to chemo Flou, hope you have restful night. I have 2nd round on 20th so will be on a similar cycle with you Lisa. Welcome Twinkle..

Yes hard not being able to reply to individual messages so please forgive me if I forget who wrote what!!

Interesting regrading infection talk and video Lisa, I had no talk and no video, just told not to shut myself away and use hand gel, ha ha. I have a dog and just told not to let him lick wounds etc and watch when picking up poop! Again re germs, I have kids and told that again, can't shut away from them either!

One thing I was going to ask? Am I the only one not getting a PICC line? Was told I would just get cannula n my hand...not sure if that is aScottish thing...

Man, I am going to get germ anxiety I reckon. My hubby started sneezing yesterday and I spent all night worrying he was breathing bugs all over me, ha ha. Going Christmas shopping tomorrow while I still have energy..

Also I am drinking so much my water I spend half my day peeing.

Lots of love to all of you....

Xx

 

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Re: November 2019 Chemo Starters

Hi everyone, 

Just a quick update I had my first cycle today, EC every fortnight to start. Óveas in and out in 1.5 hrs, as always the nurses were lovely and gave lots of info. 
i also met some great comrades in there.

i left about 1pm feeling fine and went home and had some soup.

About 4 I started feeling a bit queasy so took one of the meds they sent me with and had a couple of gin-gins. I had an hour snooze and it seemed to work.

Had a little bit of egg pasta and now am just tired/woozy.

Have been taking my temp every morning so I know my baseline and can check against that whenever.

Done my 2 litres of water and still going... apparently that is the key!

will keep you posted.

All my very best to you all xxx

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Re: November 2019 Chemo Starters

Hi Twinkle

im sure your boys won't worry when they are opening their presents on Christmas Day. You shouldn't fret you just need to concentrate on yourself and get through the treatment. 

Im due to have my second treatment on on the 17th dec so I don't think I will be going any where on Christmas Day. Have said to my hubby that's there will next year, my boys are grown up, but they still like Christmas. I don't know about you but I feel as though every one is getting on with their lives talking about Christmas and what they are going to be doing and I sometimes want to scream at them. I know that people aren't doing it on purpose and people will get on with their lives, but   at this present moment in time I just feel like I'm am in no mans land. 

we just have to think there will be other Christmases and we can celebrate bigger xx

 

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Re: November 2019 Chemo Starters

I have my start date now - next Friday 22nd. I have had my chemo info session, where they scared they daylights out of me with the infection risk talk & video!

PICC line (hopefully) going in next Thursday. The leaflet they gave me shows it on the left arm and ending up near the heart, but my mastectomy and lymph node clearance was on my left so will they put it in my right arm?

Next Tuesday I am having my hair cut short and sending it to the Little Princess Trust.

 

Hello and welcome to Matinav and twinklestar.

 

Thank you to all the forum members from other threads who have previously had chemo - it is really lovely to hear from you.

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Re: November 2019 Chemo Starters

Hi NMM

Hope all goes well with your treatment  I’m now on tamoxifen (Hormone therapy) and so far little side effects. I just wanted to reassure   Everyone that it’ll soon be over And the waiting is the worst part and I found cancer everywhere and It came to consume me at times. Have a cry shout get angry but know that little alien thingy will be gone. I was cancer free when I had surgery and the relief is very worth it. Only programme on tv was master chef which didn’t mention cancer at all but it’s flipping everywhere ladies just try to shut it out whilst having your treatment oh and sign up for look good feel better it’s brill lots of free makeup you go in it through Macmillan xx❤️

 

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Re: November 2019 Chemo Starters

Chris631 - I’m due the same Fec-T 6 cycles, 3 weeks apart. Oncologist said would be about a month after last cycle that radiotherapy would start (3 weeks worth). Been trying to work out when I’m cycle would be Xmas day 😞 Feel for my family and my boys who are still totally into the magic of Xmas - I don’t want to spoil their time 😞

 

Helen - yes, it’s a double blind trial, so would never know. In the end I felt I couldn’t live with not feeling I’d done all I could (was given choice chemo or not as borderline). In a way the trial makes that choice for me - and mindset at moment  is chemo is happening. I also have to have monthly injections to suppress my ovaries as part of the trial - or have them taken out in the future :-0

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Re: November 2019 Chemo Starters

Hi Helen - finished my first round yesterday.  Side effects for these first three weekly treatments have been insomnia on the night after chemo - up from 3-5, some odd tingling in my arms now and then, wonky appetite and very mild nausea.  I’m fasting before and after chemo and getting weekly sessions with an osteopath, acupuncturist, and shiatsu practitioner which I think is helping a lot.  I’ve lost a bit of weight but I think that’s normal given the supported fasting and the weird appetite.  They don’t do the arm lines here where I live, I have a catheter implant thing below my collarbone on the left side of my chest.  Another scar 😞

 

 

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Re: November 2019 Chemo Starters

Hi Viv

i am due to start on the 26 so the waiting is the fear of the unknown, my anxiety is bad at times, but I think I will be in a better place once I have had on round, at least I will know a bit better how it effects me. I am going to keep a journal of everthing so will at least know what to expect for future rounds. 

Hope number 2 goes better for you and less side effects xx

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Re: November 2019 Chemo Starters

Hi All

 

As the set up of this forum means you can't reply to specific messages...then just a few replies in one email! I feel rude that I can't reply to everyone. My PICC was put in yesterday by a fantastic sister who was very experienced....I apparently have tiny veins (thankyou body) so it was a bit touch and go- but I am so glad that I now have a line for the whole of my treatment.

 

Twinklestar- that sounds like a difficult wait, as how are you meant to prepare for something that might not happen? I totally feel for you. Also if you have chemo, I presume you wont be told whether you are in the experimental or control group (that it will be a blind trial?). If you do get the go ahead, then at least you will start at the end of the month- and will have received a lot of tips from the wonderful people on here.

 

Viv- I am glad you have had at least one better week. Perhaps things will be better after this next one (fingers crossed)

Flou- I hope things went well for you today...sounds like you are in a good unit, so I am hoping your side effects are manageable

All the others who are waiting and feeling anxious- keep strong. There seems to be a raft of wonderful women who are lighting the way in front of us.

All the others who have started this month...what was the span of your side effects over the 3 weeks. ? Hope you have had some good days in the mix.

 

All the best

 

Helen XX

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Re: November 2019 Chemo Starters

Hi Twinkle

wlcome to the forum. We are all here to support each other although it our own journey we are here for each other. I am due to start my chemo on the 26th so a day before you, we can do this journey together. I have tried to prepare the best I can for side effects,a m having fec-t six cycles over 18 weeks then radiotherapy and hormone. 

Its not easy at times as I know especially with my anxiety, but there are lots of lovely people on the forums who have come out of the other side and I am just hanging on to that thought. 

Xx