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Just been diagnosed, BC - triple negative

13 Jan 2020 23:47 in response to Mich8

Hi Mich

Bless you, I know how your feeling exactly, I have sat there and cried, well sobbed and said the exact same thing to my husband, will I ever be me again, it's huge what we're going through and as brave as we try to be the chemo runs us down, especially the combo, it's horrid, I had my last combo today thank goodness, but the paxol has decided to give me a rash, ON MY FACE so no eyebrows bum fluff for hair and red blotchy face but if its making us feel and look this bad, just think what it's doing to the cancer I also get really frustrated that I don't have the stamina I used to have, I've noticed if I do to much one day the next day I'm flat out on the couch exhausted, so don't feel guilty about having a compleat slob out, your body is working hard, that's what the nurse told me when I told her how I felt. Were nearly at the end of Chemo, and although that's bloody great in every way, it's also a bit scary as we have to get on a different bus, surgery and scans, I'm feeling very mixed emotions and that confuses me as I have been crossing of the days to be rid of chemo, but as my friend said, if you can do chemo you can do anything keep strong, know its the combo draining you, I will be in the same place as you by Thursday my hubby can time it down to the minute, every combo cycle has followed that pattern, I get my kleenex out, and just let it go, its a release. You will be you again soon, so I'm reliably told by friend who went through this 6 years ago Lots of big virtual hugs ,

Just been diagnosed, BC - triple negative

14 Jan 2020 10:36 in response to Davia

Hi ladies,

It seems we all have the same emotions and feelings. I still have days when I have a total meltdown but unlike Davia mine have no pattern.

Mich, none of us look our best right now!! Although I used the cold cap throughout, I sometimes wonder why I bothered!!! I used to have long blond thick hair and now it is short and really fine. I need to cover my head to go out. Also, hardly any eyebrows on top and none on the bottom. I have been steadily gaining weight, only a pound at a time but it all adds up. I really hate looking at myself it the mirror as it isn't me looking back. We need to remind ourselves that it is only temporary, I know it's no consolation but there is light at the end of the tunnel.

Davia, as you said mixed emotions at the end of chemo. I am so scared that my lump hasn't shrunk as I can still feel it. still, ultrasound and mamagram on Friday and results the following Friday. I'm not sure what will happen if it hasn't shrunk.

Mich, still not BRCA results I take it?? The waiting is the worst.

Stay strong you lovely Ladies, this time next year we will be on our survivors thread talking about our lovely long hair and how all this is now a distant memory.

Love and strength to you all,

Sue

Just been diagnosed, BC - triple negative

14 Jan 2020 11:17 in response to Mich8

So sorry to hear your diagnosis, sending lots of support to you. I have my appointment at 2.30 today and it's been the longest just over a week of my life, I just don't what to expect, I'm trying to remain positive but read into everything. I thought if it was good news they would just tell me over the phone, as so many of my friends who I have spoken to have.

The fact that I have an actual appointment booked makes me think it's not going to be good news.

Not long till I find out now and I will deal with what the outcome is. 
It's how I tell my 8 and 5 year the the news is what i am worrying about should it not be the best news. 
xx

Just been diagnosed, BC - triple negative

15 Jan 2020 02:59 in response to Niknik

Ladies, sorry once again for the radio silence.  I'm having a much harder time wih the ec chemo.

 

Lindylu, how are you getting on with the chemo?  Time does seem to fly, I can't believe mine is over already.

 

Mich8, I've been doing a bit of yoga and meditation.  Finding it quite helpful.  There;s a lovely meditation video on youtube, look up "meditation for cancer patients and carers", it's an American doctor and it's a really nice guided meditation.  Such a pain about the delay to the BRCA result.

 

SueBea, totally understand you being worried about the surgery date but surely they will stay within the recommended time limits?  Just a shame you have to suffer additional stress!  Good luck with the mammogram and ultrasound, just a couple of days to go.

 

Davia, I've never been a fan of NYE.  This year I was in bed by 9.30 Happy

 

Niknik, I'm not sure if I've missed a post from you somewhere.  What is the appointment you had booked?  Hope it went well.

 

Sorry this message is a bit all over the place ladies, trying to go back and read all the recent messages.  Hope I've mentioned everyone.  

 

The EC has made me feel so sick and very tired, had my last one on Friday.  Monday I felt the worst I've felt since starting, it was awful.  I've also been much more emotional the last few weeks.  However, felt much better yesterday and today.

 

Had my ultrasound Monday and the doctor doing it said she could no longer see the tumour which is amazing news.  She could still see something small in the lymph nodes on the mammogram but that will be removed during surgery.  Had the PET scan yesterday, will have to pick up the report in a couple of days and take it to my surgeon next week, surgery 7 Feb.  

 

Hope everyone is ok, I really will try and get in here a bit more often.

 

Sending lots of love. x

 

Roz, nice to hear from you.

 

Interesting reading all your comments about the pic line.  No-one ever even suggested it to me, I've had all 16 doses straight into the same two veins.  I have to say though that arm is sore now.  I've never had a problem with needles but in the last couple of days I've been injected several times as I've had all my scans again and each time they put the needle in I feel sick.

 

After reading all your comments about hair loss I had a good look in the mirror the other day (something I've been avoiding) and realised my eyebrows are nearly gone.  Eyelashes are mostly still there but very light.  I haven't had to shave under my arms for a couple of months but checked out all "other areas" that may need waxing and realised no hair there either!

 

I've also put weight on.  I normally see the same oncologist but she was away the other week and I saw a different guy who said in the normal blunt Chinese way "you've put weight on! never mind, diet when treatment is over". ...

Just been diagnosed, BC - triple negative

15 Jan 2020 09:01 in response to SueBea

Hi Sue,

I hope Friday goes well, I have that feeling to, what if chemo isn't working but my oncholigist said all the ladies feel like this coming to the end of the Chemo, let us know how it goes and sending good posative vibes your way x

Niknik How did your appointment go, was thinking of you, with my thee boys, there older than you two little ones, I waited until I got the full facts and sat them down and told them, but yours being so small maybe  wouldn't understand, so if it were me I'd keep it very simple, I'm sending big virtual hugs x

Hi Claire

Last EC that must feel great, I to had a very bad time on EC it wiped me out everytime so I feel for you 

I think we're all feeling more emotional coming to the end of chemo, it could be the accumulative effect of all the chemo. Good luck for your opp on the 7th what are you having? I'm due a pet scan after my chemo is finished, can't say I'm looking forward to it, I hate ant scan now, go into anxiety mode, but I'm hearing that you all feel the same. 

Oh bit of posative, I went shopping yesterday, got hot so took my hat off and walked around with just my bum fluff hair, I have a light covarage on head, it's white all over lol I started going gray age 26 but the lady on make up counter said its the in colour, get me lol, shame about the style I said, she laughed but also said it looked nice, she was being kind, I felt a bit naked to begin with but after a while It just felt natural. Hat went back on when I got outside, my head was cold lol

Oh don't talk about weight, I have put so much on and what with the steroids retaining fluid my face looks bloated and red with the paxa side effect rash, I have been told not to diet until treatment is over, I'd find it hard as my appetite is crazy Silly 

Well lots of posative vibes to you and sending big hugs, keep strong ladies xxx

 

Just been diagnosed, BC - triple negative

15 Jan 2020 10:27 in response to Davia

Hi Ladies,

Davia, well done for taking your hat off in public, I wish I had the confidence to do that!! I found EC easier than Taxol, it's probably the dose but it's all so unpredictable.

NikNik, have you had your results yet? let us know and we will do our best to support you whatever the outcome.

Caire, great to hear from you. Are you back in the UK. Wonderful news about the tumor. Mine still feels the same size which is a worry but Friday is D-day.

Mich, how are you feeling now? I'm glad to report that my chemo brain seems better. No silly mistakes or talking total rubbish (i hope)

Love to you all,

 

Sue

Just been diagnosed, BC - triple negative

15 Jan 2020 20:00 in response to Claire12

Hi Claire.

Hope your se have eased off now and you're feeling brighter.

I'm now back to feeling human after last fec and am enjoying each day doing something nice until 24th when i have my 3rd and last fec after that its onto 3 Docetaxel, i'm hoping thats as nice to me as the fec has been.

Hope the rest of you ladies are doing ok Happy

Linda x

Just been diagnosed, BC - triple negative

16 Jan 2020 12:10 in response to SueBea

Hey Ladies,

Ah thank you for your wisewords Sue & Davia Wink  It does make sense and so frustrating when we get these lows and nothing we can do about it. I'm always trying to be up beat and have things to focus on, even my sisters say i'm the most level headed one of the family (err worrying as i'm also a div, with a chemo brain now) but at the moment i dont feel level headed at all lol!  Weird how when my body suffers my mind does too, it all happens wham bam the same day when its all grey outside!

Chemo went ok today, well except for me passing out!  The nurse had barely finished the pre-meds and i was a gonna! A few of them mentioned "had a nice sleep" as i was looking around and noticed the only one left in the unit.  Hmm hope i wasn't a mouth breather.  At least next week is at 9am, i prefer the morning ones as the afternoon really throughs you out and dont like being the last patient there lol!  I woke up feeling normal this morning an no pain, so as you said Davia I'll be prepared for the weekend, although only Taxol so should be too bad.

Lovely to hear from you Claire, ah dont worry as long as you are doing ok.  Yeah EC is tough on the body, my 4th one took my ages to recover.  Great news though on your tumour, whoop whoop.  I must chase my next appointment, as i'm a ******* and went to the wrong hospital.  I'll ask again at my pre-assessment on Monday.

Ah thanks for the advice on meditation video, I'll take a look.  I'm going to the glass bath meditation tonight, on me own as my friends cant make it.  Oh well at least I'll get to chill, not sure i'll fall asleep with the steriods bounching around but sure it will do me good. 

When do you fly over?  that's good you have a date for your surgery.  I didn't work out my treatment dates very well as forgot i have another two taxol after the combo, doh.  So will take me to the end of feb. Although dont have all the dates yet, they only give me out a few at a time in case they change. Ha, ha cheeky docotor, i can just imagine him saying that. 

I did go out without a hat or scarf on sunday!  never though i could, but i was so hot and botherered I couldn't be 'bothered' what i looked like lol!  It was only a wetherspoons, a rather busy one but hey like you said we are going through so much at the moment we need to do what feels right. 

Hows everyone feeling today?

xx

 

 

 

Just been diagnosed, BC - triple negative

16 Jan 2020 12:25 in response to Lindyluu

Hey Linda,

Glad to hear you are managing ok after your fec. its good to have things to keep us upbeat and busy.  I'm going to walk my friends dog this afternoon, small things but helps eh.

xx

Just been diagnosed, BC - triple negative

16 Jan 2020 12:37 in response to Niknik

Hi NikNik

How you doing?  I see you have your results now, have they given you any more info on your treatment?  It was weird when i was diagnosed i had a sense of relief after so many weeks waiting but still felt very numb like it wasn't me its happening too!

Hope you doing ok and sending big hugs

xx

Just been diagnosed, BC - triple negative

16 Jan 2020 13:13 in response to Mich8

Hi Mich, glad your feeling better today, and well done for being brave and going out without wig or scarf, it feels weird at first doesn't it, but I was like you, hot bothered and just pulled my hat off lol

I am feeling gross today, like you say, it doesn't just effect your body, I get so low on these days after the combo, my mind goes into overdrive its horrid, just got in from having a short walk, nothing to strenuous but blows cobs off lol 

I have two more paxo after this, and got letter yesterday with rough date for surgery, 21st Feb. I finish chemo on 27th Jan so will have a little break beforehand, but scared as never had an opp before I am having full clearence of lymphs, I should see surgeon before hopefully but not got an app for that yet. X

Claire I listened to the meditation videos last night they were good, thanks for the tip, hope your feeling better x

Well I'm hoping my calm brain will be back soon, lol 

Sending you all virtual hugs, keep well ladies xxx

 

Just been diagnosed, BC - triple negative

16 Jan 2020 14:16 in response to Mich8

Hi Mich,

I am so impressed that both you and Davia have been out without covering your heads. I wish I was brave enough. I still can't stand seeing myself in the mirror.

I also preferred the early chemo appointments although I never seemed to get home till evening.

I have an ultrasound and mamagrem tomorrow, I'm not looking forward to it as I'm terrified the tumor hasn't shrunk. Oh well, it's out of my hands so I'll handle whatever comes my way.

I'm glad you woke up this morning with no pain, long may it continue

Lots of love as always,

Sue xx

Just been diagnosed, BC - triple negative

16 Jan 2020 15:43 in response to Mich8

Hi Mich

Hope you enjoyed your walk, it is good to keep upbeat like you say but sometimes i cant see the wood for the trees then i remember this isnt going to last forever *phew*

I am enjoying being able to walk my dogs again, i try and walk everyday even when i'm feeling fatigued as it does make me feel better, though the weather is making me not want to go out. 

Like you and Davia I have braved the outside without my wig / hat. I was so worried about having my wig in time but now i have it i find its making my head too hot so i have given up with it. I have bought a nice reversable cap which doesnt make my head too hot from a good ebay seller, i think she makes them so i am planning to wear that to work next week.

Sending hugs to you all.

Linda x

Just been diagnosed, BC - triple negative

16 Jan 2020 23:19 in response to Davia

Hey ladies,

Sorry to hear you feeling rough Davia, good you went out for a walk.  I haven't been walking much either with this yuckie weather.  Was going to head out today but now i have cystitis so rather painful.  I did manage to go to a meditation session tonight which i really enjoyed.  It was the sound bath meditation.  Now to listen to the videos.  the steroids are making me buss though! Glad to hear you have prov date for your opp.

Funny you should say that Sue, i freak myself out every time i wake up and look in the mirror!  I look like my dad! He passed away 10 years ago, but having no hair or eybrows makes me realise how much i resemble him! I've always been self conscious, being taller than the average woman at 5"10 i've always just wanted to blend in.  But now i've actually got the courage not to give a damn.  Well this week at least, ask me again next week lol! 

Before i forget, good luck for tomorrow, thinking of you Happy

Well done Linda in your walks, i do enjoy mine,  Hopefully cysitis will all be gone tomorrow and I'll take doggies for a walk. I wore my wig for a couple of hours today to show my friend and in the end i was like wanna see my bald head instead!  I had red marks all over my head and forehead lol!  Hmm might have to see if i can adjust the straps!  So yeah I'll be wearing a lot more scarves.

Ah all the best for work next week.  Is this the first time back after treatment or have you been working.  Sorry cant remember.

 

Hugs xx

 

 

Just been diagnosed, BC - triple negative

16 Jan 2020 23:45 in response to Mich8

I've been back one day on nye, i'm only working 4 hour shifts mon - thurs as its chemo day friday, I want to try and work on my good week and that way my full pay sickness will stretch that little bit further as i'll be on half pay end Feb. Cancer really is the pits isnt it, not noly doesit hit us health / emotional wise but also hits us financially.

I deffo prefer being bald around the house I just have to remember to put a cap on if the door goes lol.

Lx