63315members
333052posts
cancel
Showing results for 
Search instead for 
Did you mean: 

October 2019 chemo starters

Member

Re: October 2019 chemo starters

I know what you mean Lou.  I’m now not wasting any energy on shaving!!!!   If however I still have bear legs over the winter I won’t be happy 😂😂

Member

Re: October 2019 chemo starters

Hi positivelou😊 thanks, yes the kindness and love takes me over the edge sometimes , just makes me realise more the amount of pain I’m putting people through. But I need to be like you today and put my positive pants back on and get on with it ! I know I’m luckier than many others and your treatment plan sounds like you’re already climbing Everest!! So big hugs for that ! I’ll take a look at the Facebook forum . I don’t know if others have seen this on the Macmillan forum this morning but I thought I’d post it here too. It’s a free mastectomy bra from Stella McCartney 

https://stellamccartneycares.org/shop/mastectomy-bra

have a good day all xxx

Member

Re: October 2019 chemo starters

My husband, who has perfect timing at knowing the bits he can laugh about, and the bits he cant, says I need some kind of tiny Hoover constantly stored about my person, so that I can quickly suck up any stray piles of body hair that fall out in public. This image makes me giggle so much I'm generally okay about the baldness that's looming. 

 

Although if my underarm/upper lip hair doesnt fall out too... I'm going directly to the European court of human rights. 

Member

Re: October 2019 chemo starters

OMG Purpletrunks. I thought it was just me.  Wasn’t expecting to lose ‘other’ hair before the stuff on my head 😱 🤣🤣🤣

 

I’m  shaving my head on Friday night so I’m now gingerly washing my hair and hoping I don’t lose any (or too much before then) 🤣🤣🤣

Member

Re: October 2019 chemo starters

Hi smclaire  

 

Sorry you find yourself here but as you do, it's good to have you 'onboard'. I'm with you about feeling like this will never end. I've had a full on treatment plan from the get-go. 6 FEC-T, 12 months herceptin/pertuzumab, surgery, radio, then 10 years hormone tablets. PositiveLou has a plan to have climbed to the top of the UK's 4 highest peaks by next xmas, and then to conquer an international peak in 2021. But, on low days I worry that this will never end, more things will be found, and i will be constantly on treatment until it finally spreads. It is a rollercoaster indeed. Yesterday morning I could hardly raise a smile, nothing felt worth it. But today I'm off to the park for a coffee and leg stretch. 

 

@Kath that's a lovely way of putting it about the warm feelings. It's so true, the out pouring of love and kindness has really touched me too. Although sometimes I find it overwhelming because I'm like '**bleep**, this must be serious', or the realisation hits that I'm THAT person, the one with cancer that everyone rallies round! But, I totally agree with you that the beauty in this nightmare is feeling the warmth of humankind. Even though, cocooned in love as I am, I do feel desperately lonely too at times. As much as they care they can all go 'home' and I cant. 

 

@smclaire, are you on the younger womens breast cancer board thing on facebook? There are lots of positive stories shared from women who are in similar positions to yours.

 

Much love to you all,

PositiveLou ( LowLou has done one today 😊)

 

 

 

 

Member

Re: October 2019 chemo starters

Ah thanks Kath , yes I’m so lucky I have a wonderful network of friends and family and I’ve really felt positive up to now. I think it’s the whole chemo thing that’s making it so real And stirring up my emotions . I’m so pleased to hear you’ve found positivity in this awful chapter , good luck with your treatments xxx

Member

Re: October 2019 chemo starters

Hello smclaire

This sure is a rollercoaster for the emotions and the dips are horrible. I totally get the fear, had lots of that, and the grief. When you love the life you have it’s tough to see it change in this way. This may not register right now but honestly I am finding that just as much as cancer is sharpening negative feelings it is massively intensifying positive feelings of love, warmth and joy in family and friendship. Hope you can find a shoulder to cry on - a few tears and a big hug seems to move those feelings along!

love

kath

Member

Re: October 2019 chemo starters

Thank you Claire, I’ve been reading all the posts on the forum throughout and it’s such a great support network! I’m trying to just keep really positive in front of my family because I don’t want to worry them but every now and again I have a mini breakdown 😢. I’ll pick myself up , get out for a good walk and face the next step in this journey on Thursday with the support of all you wonderful people who I know are feeling exactly the same ❤️ Good luck for all your treatments xx

Member

Re: October 2019 chemo starters

Hi smclaire,

 

I completely understand where you're coming from. The fear is always there. Even when you feel it's a good day. But it does change and you will get through this. We are all here for any rants at any time but also to celebrate our wins. 

On one of my bad days last week, a story from one of our other ladies about getting up and out for the first time in a week made me smile so much, it brightened my day. I was so pleased for her. It's a community and we will pull you through with us on this bumpy road x

Member

Re: October 2019 chemo starters

Hi all, I’m having a picc line in on Wednesday and due to start 4 cycles of EC on Thursday . I was diagnosed with IDC in July and had a mastectomy in August. Initially oncologist didn’t think I’d need chemo but Oncotype score said otherwise. I’ve been really positive up to now but the last few days I’ve been obsessed with the fact that this is never going away and I feel really low. I’m 45 happily married with 2 gorgeous children and I’m just really scared 😟 x

Member

Re: October 2019 chemo starters

Ah, sorry I hadn't clocked you have  port. I dont have pic or port, dont know why but I'm going to ask. 

 

Nope, no greasiness here. But my body hair is starting to come out 😳 going to have to make sure I wear trousers with elasticated ankles to catch it all 😂😂😂😂😂😂 

Member

Re: October 2019 chemo starters

Oooh they look cool! No, mine is under my skin along my collarbone and into a vein by my heart. they couldn't guide it in the normal way and instead went through my neck. My vein is not happy. 

Anyone else having insanely greasy hair and skin? I'm trying not to wash it too much but it's bugging me. 

Member

Re: October 2019 chemo starters

Member

Re: October 2019 chemo starters

I had chemo 11 days ago so I'm in prime neutrapenic territory. Last night the dr said they worry less about viral colds, its bacterial infections that can be more serious. So, fingers crossed your cold comes and goes with no added dramas.

 

❤❤

Member

Re: October 2019 chemo starters

That's horrid not to sleep ClaireL, can you buy some kind of sleeve to keep it safe and in place? I dont have a line so dont know if that's even a thing.

 

Thanks for your kind words. I have been overwhelmingly surprised at the support and I love I have recieved from friends but still seem to feel so lonely. 

 

Xx

Member

Re: October 2019 chemo starters

I think that’s exactly how I feel about my line! I swear I can feel it at night more!!

Member

Re: October 2019 chemo starters

Hi purpletrunks

 

When did you have treatment? They thought I couldn’t possibly be neutropenic as that usually kicks in after 10 days or so. 

sorry you’re feeling so crappy. I have got the family cold so taking my temperatures every hour. Convincing myself I’m fine 🙂 

 

im glad it’s not just me then. I dread going to bed as I always feel more anxious then. I don’t really know why. 

keep smiling. We will all get through it xx

Member

Re: October 2019 chemo starters

Take care and rest my lovely. Keep in touch with your unit and be as glum here as you need to. I really hope you feel better soon. Although I know that's almost a ridiculous thing to say at the moment. 

Thinking of you and keeping everything crossed the extra bugs go away soon. Sounds like a horrendous night for you. 

Nothing new here just not sleeping well because of my port. Keep thinking it's going to move or do me in. The way the crazy brain works at these times huh. 

Xxx

Member

Re: October 2019 chemo starters

Hi folks, 

How are we all this weekend? Lots of love to the lady who just had chemo and slept for 17 hours! 

 

I have had a crappy few days. Feels like a new drama every day and my mood is dropping daily. Friday I was diagnosed with a uti, then yesterday my throat got sore and a gland popped up. So I spent the evening in the chemo helpline unit. They were crazy busy with several ambulance admissions and one poor woman screaming for ages whilst they tried and failed to get a catheter in. It was horrid.

 

Eventually I was sent home as they thought it was safer at home. I'm severely neutrapenic with levels of just 0.09. My throat hurts to swallow and my temples are pounding. But I dont have a temp so gotta keep a sharp eye on that.

 

Just cant stop crying. Went for a lovely walk in the woods yesterday with a good friend, but fear I over did it and brought on the sore throat. 

 

Sorry for the glum post.

Shi Community Champion
Community Champion

Re: October 2019 chemo starters

Don’t forget to book your look good feel better sessions through your local Macmillan centres 😘💕💕✨✨shi xx

Member

Re: October 2019 chemo starters

Hi,

 

hope you dont mind me jumping in from the June 2019 chemo starters 🙂

 

you mentioned temperatures.   I was told to take my temperature first thing in the morning every morning,  which i did and also kept a record of the readings.  This way you will see what your average body temperature is and will know if it begins to climb.


i had my chemo over 12 weeks and i didnt end up in hospital at all 👍👍

keep those eyes open !! 😳😳  good luck..
mini mad  xx 💖💖

Member

Re: October 2019 chemo starters

Thank you aj72 for this info re Boots, will look into it!

 I started chemo yesterday and survived the cold cap. No nausea yet. Hurray! I did sleep 17 hours straight afterwards though 😮. It feels such a relief to be getting on with treatment at last, two months since I went to GP with lump! Actually the health service has been great - kind and efficient, I just got delayed because I had a lung infection, bad timing that!

hope everyone is doing great today x

 

Member

Re: October 2019 chemo starters

Hi all

 

As well as the pampering sessions, check out your local Boots store as they may have a Macmillan Beauty Advisor who can offer advice on hair, makeup, nails and skincare ...  I’m going to mine after my head shave 💋

 

https://www.boots.com/health-pharmacy-advice/macmillan/feelmorelikeyou

 

 

Member

Re: October 2019 chemo starters

I will let you all know on the course. It comes right before my next round so no doubt I’ll need it by then!!

 

not to scare you all but please keep an eye on your temps. I ended up in a and e last night (not bad for less than 24 hours into your first round 😳). I’m fine and they were amazing but never think you are being a nuisance. We all need fast action if it’s ever required. 

I feel much better now btw!

 

annie

Member

Re: October 2019 chemo starters

My mum has her PICC line fitted yesterday ready for her treatment on Monday. She said it wasn’t painful, and the procedure took about 50 mins. She then went for an X-ray and the line needed pulling out by 2cm and then all was well and good.  She is having Pertuzumab on Monday and then Herceptin and Docetaxel on Tuesday, so will update on this. 

I did a fundraiser for my birthday and raised £167.00 for breast cancer now - I’m glad this will be going towards this charity as it helps so many people, and it’s amazing to hear first hand experiences. 

Member

Re: October 2019 chemo starters

Hi Annie

 

I’m glad your first chemo went well, and the cold cap was not as bad as anticipated! 

my mum has breast cancer and starts chemo on Monday. I have mentioned to her about the look good feel better course (I go with her to all the appointments/ tests so I can pick up info that she misses). It would we great to hear your feedback on the course! I’ve heard really good things from it. 

x

Shi Community Champion
Community Champion

Re: October 2019 chemo starters

Emzlew please let your unit know ASAP if you suspect you are starting with a cold. You can’t be complacent during chemo, please keep safe 💕💕✨✨Shi xx

Member

Re: October 2019 chemo starters


@KathCurtis wrote:

Dear ClaireL and Emzlew

it’s a hell of a rollercoaster. Some days are just crap. Lots of low points and tears for me. But then I have also experienced kindness and love from friends and family and that has warmed my heart hugely. I think we just have to let the feelings wash through us and trust that it won’t always be like this. It’s hardest when you still have little kids and need to put yourself together for them, very tough.

Just heading out to my first chemo. It’s like jumping in the deep end when you don’t know how to swim!

wishing everyone as good a day as possible x



@KathCurtis wrote:

Dear ClaireL and Emzlew

it’s a hell of a rollercoaster. Some days are just crap. Lots of low points and tears for me. But then I have also experienced kindness and love from friends and family and that has warmed my heart hugely. I think we just have to let the feelings wash through us and trust that it won’t always be like this. It’s hardest when you still have little kids and need to put yourself together for them, very tough.

Just heading out to my first chemo. It’s like jumping in the deep end when you don’t know how to swim!

wishing everyone as good a day as possible x




Hi all

 

just had my first round of chemo. I had the cold cap and i found it’s surprisingly ok 😃. We just have to wait to se if it works. I’ll keep you posted. 

I feel fine now. Relieved 😅.  I’m sure the fun is all to come but one step at a time. 

is anyone else going to a look good feel better course? I’ve booked on one just before my next round by which time I should have an indication of the degree of hair loss I can expect. 

keep strong everyone. 

annie x

Member

Re: October 2019 chemo starters

Dear ClaireL and Emzlew

it’s a hell of a rollercoaster. Some days are just crap. Lots of low points and tears for me. But then I have also experienced kindness and love from friends and family and that has warmed my heart hugely. I think we just have to let the feelings wash through us and trust that it won’t always be like this. It’s hardest when you still have little kids and need to put yourself together for them, very tough.

Just heading out to my first chemo. It’s like jumping in the deep end when you don’t know how to swim!

wishing everyone as good a day as possible x

Member

Re: October 2019 chemo starters

Hey emzlew,

 

I feel exactly the same. I haven't slept all night tonight for some reason. Just lying here. Feel like my chest is playing up but it's not. I fear that every day. I try not to lie on the port side in case it digs in and does something to me. 

My little boy has a bug at nursery so I'm terrified he will get that now too. He brings all bugs home for the weekend every time. 

I too hope it passes for both of us because I just feel I have a black cloud following every move I make. Like my life isn't mine anymore. 

 

Take care my lovely, you're never a pain to rant here. 

 

Good luck with the fundraising Amanda x

Member

Re: October 2019 chemo starters

Evening all

 

Hope everyone’s doing ok and be going to feel better.  Thinking of those in the group getting ready for their first treatment. Try not to worry too much and remember we’re here to listen and help 🤗

 

I’m having FEC and so far have felt ok.  It’s Day 11 in the first of six cycles so still a long way to go - no signs of hair loss yet despite my hubby giving it a jovial tug daily. 👩🏼🤣

 

It’s Breast Cancer Now’s Wear It Pink day on Friday 18th and I’ve arranged a little fundraiser at my village pub and I’m shaving my hair off !!!!  If it’s gonna go may as well make it worthwhile 👩🏻‍🦲👩🏻‍🦲

 

Amanda 💋❤️

 

 

Member

Re: October 2019 chemo starters

Hi everyone

 

Yes Jencat, I'm on FEC-T 

I have 3 of FEC and then 4 of the Docetaxel with Herceptin and Pertuzumab. 

7 rounds in total and I had my first one last Friday (4th) next one due on the 25th

 

I just wondered if it got worse or much the same but I forgot that things change halfway.. ?! 

 

Does anyone else get the hot flushes?  Is that a thing? 

 

I'm feeling like I'm getting a cold tonight.  My little ones have had one and my wife so it's bound to happen.. 

Just typical it all happens at the very start! 

 

I hate how this has made me feel.  I'm such a positive person.  Always see the bright side.  I hate how this has made me into someone who is scared of their own Shadow...  I really hope this feeling passes!!  I'm scared to get a cold.  I'm scared of any ache and pain in my body.  I thought my heart was playing up on Monday (pretty sure it was indigestion).  I hate how is made me fear my beautiful children and what they might pass on to me!

I hate what its done to me!! 

 

I need to take a breather and regroup!  

I need to start to relax try and find the old me somewhere!  

Please tell me it's just a phase and it's all part of the process.  It will pass. 

 

Sorry to rant!  Just getting sick of the sound of my own voice (in my head) because I'm too scared I'm going to be pain to everyone if I keep talking about it!! 

But I need to talk about it.... Aaargh!! 

 

Is anyone from around Reading area?  Are there any good support groups you know of?

 

Thanks for reading this far... 🙈❤️💋💕💗

 

 

 

Member

Re: October 2019 chemo starters

Good to hear from people. Really sorry to hear PICC and Ports have been so horrible to set up! But good to hear about cold cap working, going to give it a try!

i don’t think i am seeing all messages btw as some replies refer to ones I don’t think I saw. Do you all just look at October starters thread or is there another/better way to view? Anyhow hope we all get a good nights sleep.

Sending all good wishes

Member

Re: October 2019 chemo starters

I used the cold cap and it did work . Good luck ! 

Member

Re: October 2019 chemo starters

Hi Emzlew,

I found FEC seemed to follow the same pattern, although I might have got a bit more tired as it went on. Docetaxol was the reverse, the first one was the hardest. I don't know if you're having the same, (sorry I can't remember what chemo everyone is having) but other chemo's might be different. Glad you're feeling brighter today x

Member

Re: October 2019 chemo starters

Sorry to read about the problems with your PICC line today Annie and hope your chemo goes well tomorrow x

Member

Re: October 2019 chemo starters

Hope your chemo goes ok tomorrow Kath x

Member

Re: October 2019 chemo starters

Hi Claire,

I'm from the Oct'17 group and had FEC-T. I found that the 3 sessions of FEC seemed to more or less be the same, but with T I found the first one harder and the next two seemed easier, maybe my body had adapted by then to the change of chemo x

Member

Re: October 2019 chemo starters

Hi claire

 

like you I’ve had my eyebrows done. They were really dark but I’m really pleased how they have worked out now. 

I had two nurses try around 4 times each to sort my picc. Cried when I got home. I just need a good nights sleep to prep me for tomorrow 

 

I’m going for the cold cap. Anyone else doing the same?

Member

Re: October 2019 chemo starters

Hi all,

 

Had the eyebrows put on today. Currently look like a supervillain and the boy asks "what that on you mummy" as soon as I get him from nursery!! Straight out of the mouths of babes! They will get lighter and I'm pleased with what they have done.

My port has been my biggest pain so far apart from my first night after my first treatment. 

I'm sorry the picc line took so long to go in Annie! That sounds horrendous and I think I would have lost the plot!! 

I've heard cycles can be the same whilst you're on the same drug. Not sure how much changes when you switch though. 

 

Glad you're doing a bit better emzlew, been thinking of you all. Good luck with the start dates tomorrow and next week everyone. 

 

 

Member

Re: October 2019 chemo starters

Hi everyone

 

i have had my picc line put in today ahead of first treatment tomorrow. 

can I swear? Good lord. 2 hours to get it in (insert smutty innuendo here). 

tomorrow should be a breeze by comparison!!!

 

how’s everyone else holding up?

 

annie

Member

Re: October 2019 chemo starters

Hello Emzlow

Good to hear you are feeling a bit better. Was that your first chemo? What’s your regime?

Tomorrow  I start 21 weeks of chemo, once weekly for 12 weeks then 3 weekly for another 9 weeks. Glad to start treating this tumour but not looking forward to the process.

hope everyone else is doing ok

xx

Member

Re: October 2019 chemo starters

Hello lovely ladies! 

 

How are you all?? 

 

I'm feeling much brighter today after feeling utterly exhausted all week! 

 

Do the symptoms follow a pattern each time after each chemo?  Do they differ?  Do they get worse?? 

 

Does anyone else keep checking their hair?  I keep expecting to wake up with my scalp on my pillow next to me?! 🙈😬

Member

Re: October 2019 chemo starters

It certainly will... I will walk every day now and be back up on the hills next week. Not much that stops me getting out into nature 😊😊😊😊

Member

Re: October 2019 chemo starters

Go Purpletrunks !!!!!!

 

glad the sun was shining too 🌞

 

gentle walking will help with fatigue, getting your energy levels back up, sleeping and your state of mind. One foot in front of the other - it’s what we do to get through this 👊🏻👊🏻👊🏻

 

Keep up up the great work 💪💪💪💪

 

Amanda 💋

Member

Re: October 2019 chemo starters

You are quite possibly a superhero! Well done lovely! You got this!! 

Member

Re: October 2019 chemo starters

Had to share lovelies... I just walked around the block. 🎊🎉🎊🎉🎊🎉🎊🎉 and the sun shone on me 😊😊😊. Its such a huge difference from yesterday and I just know I will be able to go a little further each day. It's a small win, but I'm taking it!!! Onward, upward ( until round two 🤣🤣🤣)

Member

Re: October 2019 chemo starters

Thank you minimad. Very helpful feedback on chemo 🤗. I see respiratory doctor re my lungs and oncologist tomorrow. If all is ok i start chemo this Friday or on Monday next week. Xx

Member

Re: October 2019 chemo starters

That's amazing Lou, 

 

You're doing so well. Keep taking each day at a time. Thinking of you. 

 

Thanks mini mad, I'm hoping the chemo will keep it at bay with no recurrence. Time will tell. 

 

Claire

Member

Re: October 2019 chemo starters

Hey KathCurtis

 

yes i am sooo relieved to be done with the chemo but even now i still have aches and pains and the fatigue/tiredness is pretty awful.  But i am finding that each day i walk my dog is getting quicker 👍👍👍

 

the chemo i found doable once you get into a routine at your chemo unit and getting your bloods checked everytime.  I had a PICC line put in as my veins in my hand arent too good after the first attempt with a cannula....  side effects are different for everybody,  i had most of them but not all at the same time.   You will be given premeds before your chemo and the nurses keep a close eye on you.   I saw people fast asleep whilst having their sessions.

the Filgrastim injections help keep your neutrophil levels healthy.  You will gradually learn all this as you go along.

what i will say is dont be afraid to ask about anything,  i was full of questions !

do you have a start date yet ??    Take care  mini mad xx 💖💖