Starting chemo in September

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Hi Ladies

Welcome Curlyglad, sorry you have to be here but this is a good place , an oasis in all the turmoil!

Jay,
Glad you got the picc sorted, it must be so hard with them keeping changing things all the time, its not really fair. Good for you that you didnt just go along with it when you didnt feel ok with the plan. The bc nurses are a god send my one is an angel!
Do you mind me asking how come you get a picc line, it hasnt even been mentioned to me, is it better to have one?

Anyone on chemo today- good luck xx

Love Jox

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Hi Jo…

My BC nurse is lovely too, she has really helped me today, the woman who rang to change the appointment was the manager and a bit abrupt, I didnt really feel like I had a choice, then when I got off the phone I started thinking there is no way with my needle phobia I can do it like that, so phoned the BC nurse to see if she could help.

I think here in Brighton its a choice for everyone to have a picc line, not sure if its different in other areas but certainly worth an ask…

Jay X

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Hi all and wondered when i might see you over on here curly glad scans were good!
My skin has broken down even further my skin cons says she’s come to end of line i’m so worried about doing chemo with the GCSF and more worried still that they might not do chemo at all as my skin is weeping. bandaged from the neck down can hardly even go for a pee have to type with baby fingers and i’m at my wits end - i really feel that my skin is my biggest problem at the mo daily hosp sessions every morning i’m there for about 2 hours but today took 4 aqghhhh!
Hoping will still get portacath as skin so inflamed but not even heard from them yet and due to start next fri aghhhh!

OK THAT LOTS OUT OF MY SYSTEM!

BCN’s are a wonderful breed each one I have net has been so lovely and they fix things (within reason of course)
Rainbowjo - in northants picc line standard if you doing chemo and herceptin but my friend just had hers for FEC-T only, i’m getting portacath as such a high risk infection any way with skin and my son has a few difficulties and exposed pipework could be dodgy!
Jay we have to keep on top of things ourselves a lot eh! but well done for getting things sorted so you can cope better x

Good luck for tom Jo and Ginge well done with cold cap x

Oh Julia didn’t realise port would be done under local? Still waiting for my info grrr! Hope wedding is truly lovely and fingers crossed for sunshine!

Kate triple neg means you won’t get tamoxifen, herceptin or other hormone treatment but when i looked into it chemo tends to be well received, there is a good thread on here x

hope you all well xxx

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Oh Sandipantshell you sound as if you are having a horrid time of it. The portacath in my case was local and enough sedation that I don’t remember much about it, certainly didn’t hurt. Other places may do it under general anaesthetic.

At least dealing with a Bridezilla daughter is taking my mind of off the chemo to come next week. It will be lovely to have all the family together.

Having a BCN has been really good as I’m passed from surgeon to radiologist to oncologist, she’s been a constant source of information and help and used to us all being a bit (lot) fragile.

Enjoy your evening everyone, I’m thinking red wine before the taste buds turn on me in the weeks to come.

Julia x

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Sandipants

You really are going through the mill poor thing. This thing is blood shi**y.

I still don’t know if I’m positive or negative. Need to find out.

Sometimes don’t you all think when will it ever end. sorry feeling a bit low today and only just started chemo.

Southernlucy - enjoy your wine - on a brighter note its friday tomorrow and weekend with the family to look forward to.

xx

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Morning Ladies…
Hope you are all ok…

Nicola and Rainbow really hope yesterday went ok for you both, and you arent feeling too bad today…

Sandi, you poor thing, as you you havent got enough to contend with as it is, I really hope youe skin improves very soon…

Julia, hope you enjoyed your wine, its well deserved…

Ginge, I hope you are feeling better this morning, we are allowed to feel low, we are all going through so much at the moment, how are the SE?..
It does seem like a long road ahead, but we will help each other through it…

Take care my friends…

Jay X

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morning girls, Welcome to everyone who has joined this week and love to all those moving on to the the chemo trail. Could we develop a board game in the monopoly theme as I keep moving two steps forward and then three back and then on other days life is ok.
Got my wig yesterday , decided against the tina turner/bob marley as I don’t do hair now so I am certainly not going to faff with a wig. Have decided to get my hair cut very short as I have decided that I will be able to cope better with losing short hair than long. Does that make any sense?
The taste thing is still bad and the worst is that I have gone off chocolate completely and the fridge is full of things people bought me!!
Not feeling too bad may try and do some work next week, off to see GP this pm.
Weather clearing up here in the peaks .
Have a nice day girls.
Fi XX

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Hi everyone x

Had my first chemo yesterday - first of FEC x 6 and counting down! Managed the cold cap!! Ended up with a weird flower smell in the back of my nose?? Was feeling ok on leaving the hosp but the sickness really hit me later, I took my anti-sickness tabs and went to bed. Waited for sleep but no, it didn’t happen. Instead my brain was writing a best seller! Aghh!!

I think you are all very brave, it is a long suffering journey but we will all beat it! :slight_smile:

Anyone had itchy palms??

xoxo

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Fi - any chocolate going spare send it down to me in Devon. I’m trying to put the weight on I lost cos of all the stress! Maybe it’s time to get back on the cream teas.

I’m also having hair cut very short next week and I’m taking my hairdresser (who’s a friend) to help me chose a wig so she’ll be able to advise on how she can cut it to make it look like my own. All my life I’ve had curly hair and have often tried to straighten it so maybe it’s time for a new look anyway.

Had bad night last night and was awake and up from 2.30 but I’m feeling ok at the min so will go out and make best of this muggy day. I’ll try and stay awake until proper bedtime and then maybe I’ll sleep right through. Anyone else having trouble sleeping?

Met up with colleague yesterday who went through all this a year ago and she looked amazing! So fit and well! She said the chemotherapy is really do-able and was not as bad as flu she’s had in the past. She also worked p/t most of the way through (in very stressful job)and in total only had 2 months off work in the year. Of course she said everyone is different and it might not be like that for me but all the same it was great to hear it cos, in my head I’ve been thinking I’ll be laid up for months on end!

Sandi - You’ve got it extra tough at the minute - but you don’t need me to tell you that. I hope you’ve got help there with the kids and everything else. Don’t be proud - accept any offer of help people give you.

Stay in touch everyone xxx

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Hi…

Fi, It does make sense to get your hair cut short, alot of people have said it is a bit easier to deal with, when its short, I already have short hair, so i dont have to make that decision…
Saying that a friend of mine had her hair cut short, and didnt lose any of it, but she has bowel cancer so maybe it depends what chemo you have, it seems to be quite certain for us dosnt it…
So glad to hear you arent feeling too bad, how are you sleeping?..

Curlyglad, My sleeping patten has been pretty bad since I was diagnoised, I seem to fall asleep ok (on the sofa!) as i’m so tired, but wake up from 2am onwards, then cant get back to sleep! its so frustrating, and makes the nights so long, I really dont want to take sleeping tablets if I can avoid it, so no you are definately not alone…

Take care

Jay X

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Bumped for flutterby

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Hi all going to be starting chemo in around 2-3 weeks when my mx has healed a bit more. Just really worried and confused with it all. Really concerned about hair loss and wondering if anyone has any tips, advice before treatment starts and during.
Going to be having chemo for 6 months and herceptin for 12 months, do you need to have a picc line or catheter fitted or do they see how you go?
Thanks
X

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Hi Flutterby,

Welcome to the gang although sorry you have to join us too!

I’m probably not the one to talk about trying to reduce hair loss, as I’m not having the cold cap (personally, I couldn’t cope with it and would rather that resource went to someone else). However, I’m sure one of the ladies will be along soon with advice! There is an excellent headscarf video quite early on in the thread.

I’m not too sure about ports & picc lines as my hospital haven’t mentioned it to me yet. But again, you will see there’s lots of discussions on it!

Take care,

Axx

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welcome flutterby, same treatment as me , I have had my first chemo and it was not as bad as I thought.
I have resigned myself to hair loss, have got my wig and going next week on a scarf tying course.
I am sleeping ok but waking up a lot, also tired through the day but trying not to fall asleep on the sofa watching rubbish telly. I can’t settle to reading. I have found that if I can go out each day I am better.
Got my exemption form today and collected difflam mouthwash.
Off to the pub now .
Night girls
FI XX

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Hi Flutterby

welcome to our little gang. I had my first chemo on tuesday and had the cold cap. (my y is not working properl so excuse m typing as I have to keep banging the laptop)!!! ou put it on 40 mins before and then during chemo and then have to keep it on 2 hours after. I found it to be OK but time consuming. I didn’t have the port fitted for the 1st chemo but having it done before the 2nd as I don’t have good veins and as they can only use one arm as i had total lymph clearance and they said it can damage the veins. I have sorted out a wig and some scarves in prep for losing hair but it might not happen. I am not getting it cut until it starts to fall out.
Other girls will have much more experience than me so hope this helps. ginge xx

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Hi flutterby,

I used the cold cap too and didn’t find it that bad. I am now a week and a half in so it is too soon really to tell if it worked or not. Does anyone know how long it is before you start losing it? I read it was about 2 weeks I think. I collected my wig today in preparation, I wore it home from the hairdressers and even popped into waitrose in it. It felt weird but I am sure I will get used to it.

I can’t remember who asked about itchy palms but I suffered with this too. My hands and feet were hot and itchy for the first few days after chemo (fec) but seem fine now. I used e45 cream, it is lovely and cooling if you keep it in the fridge.

I hope everyone has a good weekend.

Kate xx

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Hi - just popping in from the June/July threads to see how you ladies are doing.

bigbirdkate - if you are going to start losing your hair then it will begin around day 14 after your first chemo. For me, when I ran a comb through my hair I would find normally only a couple of hairs with each pass of the comb. By day 14 it was around 10 hairs. By the time of my second chemo I had quite a large area of scalp where the hair was very thin. I did the usual comb over, but in the end - like most of us end up doing, I shaved it all off and now wear my wig.

As for the itchy palms - yep - I have that too, usually just for the first few days after chemo. Along with constipation, wind, trots, fizzy mouth, food tasting like cardboard or soap.

It’s all do-able. I am halfway there and I was very scared when I started.

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Morning Ladies…

Welcome Flutterby, so sorry you find yourself here, there so much to take in in such a short space of time, its no wonder we feel confused and overwhelmed, not to mention, I seem to have turned into an emotional wreck! but from what I read this is all normal, and coming on here finding that alot of the girls are feeling the same, really helps…
I cant help much as I havent started yet, I am hoping to get a picc line fitted early next week, in my area it seems to be on offer if you want it, it might be worth looking into, especially with you having Herceptin as well…

Fi, glad to hear you are doing ok, hope you had a nice time at the pub…

Ginge, hope you are alright too, I havent done anything about wigs or scarves yet, apart from look at a couple of sites, do they talk to you about it at the induction appointment? its all coming a bit quick now, they have changed my appointment 3 times and it is now on Monday!!..

Kate, how are you feeling a week and a half after starting?..

Sandi, how is your skin, is it slowly improving, I really hope so…

Nicola and Rainbow dancer, thinking about you, hope you havent had too many SE…

Eozev, and Maidincornwall, havent heard from you in a while, hope you are both ok and not suffering too much…

God another essay, sorry girls…

Have a good weekend everyone…

Jay X

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Thanks supertrouper, I will prepare myself for the dreaded shave as soon as next week! I am not too worried about having no hair, I just am worried about the in-between time when it starts to fall out.

Jay, I feel pretty much normal now. I am not tired at all (got more energy than my OH!) The only SE I still have is a slightly sore mouth. It feels like I have burnt the roof of my pallet and I still have a horrible taste. Nothing a few mint won’t cure. My arm is also a bit sore as my vein is bruised. This will be solve next week when I get my portacath.

I am not sure if I am taking it too far trying to avoid infection. I feel fine but am staying away from people in case they give me something. I am obsessed with washing my hands and cleaning! Is this normal?

Kate xx

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OMG I can’t stop eating. I am so going to be ten ton tess by the time this has finished with me.
If I feel sick I eat, so I am eating most of the time. Horrible taste in my mouth. Hopefully I will feel like you Kate next week and have loads of energy. Not looking forward to the Portcath if feeling like this. Rather they put me out to do it!!
Hubby cooking me a lovely stew tonight - so into my comfort food at the mo. Wonder if hes doing dumplings!!!
Have a good evening everyone
Ginge xx