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Starting chemo in September???

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Re: Starting chemo in September???

Good luck tomorrow Pots, hope its not too bad at the bar and the days following 

 

Sue

xx

Barbarella63
Member

Re: Starting chemo in September???

Soooooo tomorrow's lucky contestant on the chemo games show is pots14 flying solo tomorrow!! Good luck pots hope it's better this time, it was for me thank god!, glad you and the folks are back on track!! Sadly for me there is not enough garden left to make a sculpture of any kind, but I have a cat who is moulting and I could improvise lol
Lulu34
Member

Re: Starting chemo in September???

Pots glad things are seeming a little better today... Hope things continue to improve and the parentals get the idea... Sometimes folk just havent a clue what its actually like to be going through this no matter how close you are they can sometimes put their foot in it.

Big hugs all round girls xxxx
elma55
Member

Re: Starting chemo in September???

Aw Pots, it's good to rant, no need to apologise.  Nice that you've sorted things with your folks though.  Haha birds nest, brilliant idea - wouldn’t take much visual tweaking either if you know what I mean!  Good luck for tomorrow with your next taste of the swamp juice – if I’ve got the date wrong btw, forgive me, I’m still semi-immersed in chemo fog. 

 

Hope all’s well with everyone else, and good luck to those with appointments tomorrow.  It’s nearly the weekend, have a good one, everyone! xx

 

 

Pots14
Member

Re: Starting chemo in September???

Hi all,

 

thanks for your lovely comments. Ended up writing a letter to try to explain what was (and what was not) supportive. They've both reacted brilliantly and have had a long chat with them today. So easy to for misunderstandings! My parents live extremely close so sometimes getting the balance right is difficult. I didn't realise I was quite as emotionally on the edge as I am, probably because every time I look in the mirror I see a bad version of Professor Trelawney from Harry Potter looking back at me!

Went out for walk today and feel much better.

Suggestions for hair garden sculpture - birds nest.

 

Take care all of you, onwards and upwards,

 

Pots

Lulu34
Member

Re: Starting chemo in September???

Scottyb im another TNBC. First diagnosed with it age 40 after a hormone pos bc in the other side at 37. No family history either but was able to be gene tested as young onset TNBC can indicate a gene mutation.... Brca2 in my case.


I run tnbc group on facebook your welcome you join it if you fancy.

Pots sorry your folks are going overboard.... Hope they can take a chill pill and butt the hell out!... Have you thought about directing them to cancer support services like maggies centre which supports carers as well as patients.

Seeing my tomoz and discussing my annual leave v sick leave arrangements.... Shes usually very reasonable so fingers crossed.
Nikki49
Member

Re: Starting chemo in September???

Fec 2, Day 2
Just popped on to say a quick hello to ScottyB, the girls on fb told me you'd posted in the forum. As you can see I had my second dose yesterday so feeling a bit rough at the moment. I'm also TN.
Take care xx
frenchfancy
Member

Re: Starting chemo in September???

Hi Pots,
It's absolutely allowed, necessary in fact, to vent whenever you need to and don't need to apologise!
My thoughts on how some people deal with what we tell them is that they want to put a positive spin on it as they feel that helps keep us more 'up' and positive about looking to the future. I can sort of agree with that but they should also appreciate how badly it is affecting us NOW and there are days when we can't see past that. It's very much a balancing act for us & them, they feel they need to help and we want them to. It's finding a middle ground that works for both!
Barbarella63
Member

Re: Starting chemo in September???

Aw pots feeling your pain on the parents front!, mine are elderly (in their 80's) and I'm their only one, they don't really understand chemo and can't retain the info I tell them, it drives me insane even though I know they are really concerned and worried! All they want to do is come over and look after me which given their age is ludicrous ! They live about an hour away so they can't just drop in for an hour!! They have been over to " help" on my good weeks but they are just a hindrance really as we go over the same stuff again and again! I feel really mean keeping them at arms length but I can't cope with them at the moment! I absolutely love them to bits...just not right now!!! I think you should have a little rest from them for a while and concentrate on you! Big hugs to you keep your chin up xxx
samjs
Member

Re: Starting chemo in September???

awww Pots sorry you are having a tough time with your parents. i think  all of us feel we can't deal with things like we did before, it's natural, we are in a crap situation.   Sometimes people (not only parents) don't listen and misinterpret what we tell them, possible because they are struggling too. If you are well and on a good week  go out. I have been told I don't need to lock myself away  but need to be careful so I have antibac and wipes at the ready for week 2 of the cycle.

Hope you feel a bit more like you and you are right we are doing brilliant!! 

SAm xx

Pots14
Member

Re: Starting chemo in September???

sorry to spout off. Feel guilty about being unreasonable, just can't cope with what I'd normally cope with.

Should have said:

 

SuzzieG - sorry your chemo's been delayed, but glad your feeling better and when your body is stronger you'll be in a much better position for the zapping.

 

Elma55 - don't think you need to worry about your seroma becoming infecting. Can't remember all your seroma history, but a seroma is sterile within your body. It's only when they drain it there is a risk of infection so the chemo in itself shouldn't cause it to become infected.

 

take care all of you, none of us deserve this and we're all doing brilliantly!

Pots14
Member

Re: Starting chemo in September???

why is it that some parents are incapable of treating their kids (I'm 45 for God sake!) with a modicum of common sense? Misunderstanding some information, repeating it as if it's fact and not listening to OH when he tries to correct it with the effect that I feel guilty going out (even though I feel fine) in case my f..................in neutrophils go down. just has the effect that if my chemo is delayed or have to have the dose reduced it'll be my fault even though I know that's absolute rubbish. Have cried my eyes out and now I'm absolutely furious.

 

Pots

Guest user
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Re: Starting chemo in September???

Hi ScottyB, welcome to the Stars. Hopefully you will find the help and support you need to get you through all this here. We are all at different stages on the chemo train but all heading for the same station. I started my treatment on 3rd Sept and have now had 2 FEC with one more due mid Oct. then 3 Taxotere. Been quite lucky so far with SE's but don't enjoy the boring days that this has thrust on me. Hope you find something to help pass the time. Our Facebook support is quite a good way! Take care xx
Lucy_BCC
Member

Re: Starting chemo in September???

Hi ScottyB and welcome to the BCC forums

Alongside the support you have here our helpliners are on hand with practical and emotional support weekdays 9-5 and Sat 10-2 on 0808 800 6000

 

You may find the links to our 'Younger women's' information pages helpful where you will find lots of inforamtion regarding diagnosis and treatments as well as further support ideas from BCC :

 

http://www.breastcancercare.org.uk/younger-women?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_c...

 

Take care

Lucy BCC

 

 

 

 

Barbarella63
Member

Re: Starting chemo in September???

Hi scottyb welcome and sorry you find yourself here but the support is great. Hazey87 is only 28 I'm sure you and she will get along famously, she's on a hot date at chemo club central today so may not be up to posting! Gotta quickly plug the September stars Facebook group totally secret and just for us! It is really busy with constant posting but it's a great help and loads more personal with photos and laughs, definitely good if you want cheering up....it's a little bit cheeky too lol if you wanna join private message one of us and we will sort it! In the meantime stay strong and keep your chin up xxxxxx
Jackpot
Member

Re: Starting chemo in September???

Hi Scottb

I'm also triple neg, aged 45, also no family history of breast cancer, have they offered you genetic testing for the brca1/2 gene, apparently most people with the faulty gene end up with tn, I'm going for mine in nov

Take care
Jackpot
elma55
Member

Re: Starting chemo in September???

Hi ScottyB, glad you found us here on the September thread.  I had my first cycle of FEC-T on 24th September so not far behind you, I'm also TN like you but a lot older.  You're right about the struggle to keep occupied, I'm still working on that one!  Hoping it will get easier as we move along.  One thing I have noticed is that I'm enjoying doing mundane chores - got really excited this morning when I managed to change the bed and load the washing machine, a bit sad really but hey, it's an improvement on yesterday!  I get fidgety if I sit around for too long so I'm off for a walk this afternoon, something I'm hoping to do more of over the next few months.  Let me know what ideas you come up with.  Be safe xx

 

ScottyB
Member

Re: Starting chemo in September???

Hi All

I was diagnosed with TNBC in August and had my first chemo on 20 Sept now 'looking forward' to the second one next week! I felt ok with the first dose just not myself. I am 31 and there is no family history of cancer of any type so this is all so new to me and my family. At the moment part I struggle with is being off work and not seeing people very much so now trying to find a hobby to keep myself occupied. Hope everyone is getting on best they can

Take Care All x

frenchfancy
Member

Re: Starting chemo in September???

I for one am not looking forward to the 'T' half, but still have the next & final Fec round to get through. Will leave the worrying till that's done if I can manage to. No point adding to stress levels unnecessarily is there?
Sounds like some of us not having the best time of it at the moment, with side effects and other worries, and really hope this improves soon for you ladies xx
For all able bodied (ish) enjoy every moment you can!!
Hope you get on ok today Hazey and good luck to anyone up for scans, tests etc.
I think a few are on a pamper outing as well so come back relaxed and feeling well xx

Going back to bed for now, can't even face the sofa today, so shattered!! Catch you all later xx
Nikki49
Member

Re: Starting chemo in September???

Pressed post before I finished.... Chemo brain.

Hope everyone is managing their se's and I good luck to Hazel hope the cocktail is kind to you.

Take care everyone xx
Nikki49
Member

Re: Starting chemo in September???

Fec 2, Day 2
Hi Barbs, glad you doing better this round, me too I really upped the water intake this time had a litre before and a litre after and almost through the second litre. My next trip for the Fecking last dose will be 22nd October, then we have the 'T' delights to look forward to, mustn't complain we'll be half through by then 🙂
Guest user
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Re: Starting chemo in September???

Hi Barbs,

 

Good to hear that you seem to be better this time round. My next date at the bar will be 15th October, my last one of FEC (yeah FEC off !) before i start on the T.

 

Hope everyone is ok and apologies for not always posting on FB just find it hard trying to juggle work & home life etc. I always make sure that i read every post, just dont always have the time to have input....MUST TRY HARDER 🙂

Barbarella63
Member

Re: Starting chemo in September???

Morning girls sorry I have been absent from here not felt the best the last couple of days but getting there now! Coped better with the dreaded chemo on round 2 though and was only sick once so very glad about that!! Sorry Susieg you are having a tough time at the moment bless you hopefully your will get your next chemo soon no one likes delays as psyching yourself up for it then having it cancelled is not easy. Let me know when you get a date and I'll update the list. Talking of the list can the following peeps let me know when your next dates are

Rachelr
hg12
Bonnie8862
Seaview
Ally51
Susie-g
Maseo
Hawkie.
KatePB.
Kraftireader.
Julo.
Thebatman
HEvg123
Beam67
Icle-v.
NIkki49
Blue-topaz

Pots glad you're home again sounds like you've been through the mill too bless you! Just have to keep on thinking its doing its job and if you are feeling I'll think what it's doing to any stray cells hiding around the place!!! Hope all stars have as good a day as possible, I for one am taking it really easy, being waited on by OH and still in bed!!!
frenchfancy
Member

Re: Starting chemo in September???

Hi Pots,
Welcome home again, it's not fun when we have hospital stays through this, though it does sound like you had better than some of us . Glad you got picc sorted & should make it easier in the long run.
Not good about hair time but we've all gone through it. Like you was pulling mine out in bits so left it as long as I could and then gave it a gods wash where most if it came out. Feels so much better and I know it's only a matter of time before all lost. However, now means 'wiggy' has come out to play!!!
Glad to hear you're also feeling abut better now as well and that infection identified. It's great we can give each other a heads up on symptoms & what to look out for when we're getting infections.
Hope you continue to improve and as I said, good to have you back xx
Lulu34
Member

Re: Starting chemo in September???

Potssounds very eventful time your having.... As for redicing the dose the way chemo works is that every body gets the max amount but some folk will have serious side effects this is because they had too kuch and its trying to escape in other ways.... So reducing doesmean your getting less just means you dont have to get rid of as much. Which will mean your SEs should better.... Anyway hope its all much smoother the next time.


Lxxx
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Re: Starting chemo in September???

Hi Stars, just a very quick message because I need to get to bed after an eventful afternoon and evening. So sorry to hear that some of you have been out of sorts and things have gone a bit out of kilter. Hope everything gets back on track soon.
Good luck to Hazey85 for tomorrow's trip to the bar and to everyone with appointments etc.
Love and hugs to all. Keep shining bright. xx
Jackpot
Member

Re: Starting chemo in September???

Hi elma55
It was a long day with a nice shiny new bruise to add to the collection ... My arm a bit like a pin cushion right now....
Not been to bad with side affects a couple if bad days each cycle and taste and smell changes...so bearable

Hope your feelin better soon

Jackpot x
elma55
Member

Re: Starting chemo in September???

Hi there Jackpot, you must be shattered after your day.  I had a radioactive jab with one of my scans - they do sting a bit don't they! Yes, you're definitely right about the waiting being the norm, just keep yourself busy until then.  Hope you haven't had too many chemo side effects - it does seem to be an individual thing.  I felt like a zombie today for the first time (day 😎 so slept for most of it - now trying to catch up with posts, but think I'm ready for bed again already.  You take care too xx

elma55
Member

Re: Starting chemo in September???

Pots, there you are – we were all wondering where you’d got to!  Sorry you’ve had to spend time in hospital but glad they looked after you really well.  The neutro-sepsis thing is a bit scary especially as you say when symptoms aren’t that obvious.  Thanks for the warning signs!  Glad you’re out of the woods now.  Crazy that the phlebot’s can’t take blood from piccs – there are a few like that at my hospital.  I like that you’re collecting your hair, that is a cool idea, fascinating stuff isn’t it!  I’m going to ‘do’ something with mine, maybe a garden sculpture … who knows.  Stay safe xx

elma55
Member

Re: Starting chemo in September???

Oh Sue (suzzie-g) that really sucks!  It's bad enough trying to psych yourself up for chemo without being told you can't have it.  Weird that you feel so well too but that must be a good thing.  I'm day 8 of first cycle and the chemo appears to have flattened most of my seroma, just left with armpit fluid now, but have to say I'm a bit worried that low immunity this week might have an affect on what's left.  Things to do - difficult when you're used to working.  I would get out and about as much as you can, fill the time that way - of course there's always xmas shopping!!! 🙂 or just give yourself a few little treats to make up for it.  Hope you're back on track next week xx

frenchfancy
Member

Re: Starting chemo in September???

Suzzie,
Sorry you got delayed again for your next dunking but they obviously want to make sure your as well as can be to deal with it. At least your feeling a little better with the antibiotics now and you're at home. Sounds like they looked after you really well too. Xx
frenchfancy
Member

Re: Starting chemo in September???

Hi jackpot,
Can't comment on the contrast for ct scan unfortunately. 4 times they jabbed me and couldn't find a blasted vein!! Did it without in the end. Waitin is always the worst bit. Try not to worry too much xx
Jackpot
Member

Re: Starting chemo in September???

Hi all
A long day at hospital today, first time I've had a pet/ct scan....boy them radioactive injections can be painful ,
Got to wait till the 16th for the results...waiting for results seems to be the norm these days

Take care
Jackpot
Guest user
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Re: Starting chemo in September???

Hi all,

 

Home from hospital, delayed for another week as infection still present, another week of antibiotics, carn't complain feel better than I have in months, so this infection must have been growing undetected for awhile now.  wondering  what was side effects of chemo and what was infection, I guess I will find out next week if they go ahead.

 

 I will use the time to catch up on all the jobs I have saved for when feeling better, sounds like a new year resolution (might not as got in the habit of watching trash tv)  could go to work for the week ( no mess up my sick leave)  could find some artistic gene I don't know about and create something ( probably just a mess) could take up exercise  (that really is a new year resolution) Anyone any ideas? what are others doing to pass the time?

 

Hope others that were up today and this week  for poisoning feel ok, and your se's are minimal.

Sue    

Pots14
Member

Re: Starting chemo in September???

#1 day 15

Hi there,

Escaped yesterday from hosp. Admitted via A & E  last week with neutropenic sepsis.Little buggers (neutropils) had taken flight and nowhere to be seen (despite 5 days of injections by OH). So IV antibiotics, more injections, daily bloods, quite a bit of blubbing from yours truly (my poor OH) and being kept in my room with door shut and people coming in having to wear gloves and aprons (and for one day masks as well). Staff were all lovely but am so glad to be free..............................Was on  phone arranging to be picked up before the drs had got out of the room!

 

So sorry some of you had grotty time in A&E. My experience was superb. Don't know if this was 'cos oncology team had phoned ahead, but was whisked straight through and although I was there for a few hrs before got admitted, had cannula in, bloods taken and first lot of antibiotics going within 20 mins. Cake and card going to them!

 

Ended up with PICC rather than portacath and is no prob at all. and yes it is frustrating that it often can't be used because of lacking of training (none of the phlebotomists could use it to take blood, which I find surprising).Had to have a cannula in  A&E  but that was because to start with they didn't know where the infection was so if they used the PICC line and that was the source of the infection it would have just made things worse.

 

Turned out buggie source was just my sore mouth, and the only signs that my neutrophils were in my boots (couldn't detect them at all in A&E) was felt very tired when I had been feeling better and a one off feeling I was going to faint. At least I know what to expect next time and won't be lulled into a false sense of security Oncologist  said will try giving the injections for longer next time, but may have to consider reducing  chemo dose -  thought of that makes me pancky. Even though felt like a caged tiger and so so bored would rather spend 1 wk every cycle in isolation  than not get the fullest dose I can stand to kill off the bastards.

 

Hair literally coming away now. Morbidly facinated if I'm honest. Thought would lose it in clumps but it's just thinning and thinning. Must have had v. thick hair 'cos looks the same  on my head so far despite plaky bag  with birds nest in it! Am running hands through it and brushing it  every few hrs to add to collection. Son still thinks it's "cool"  

 

Have tried to catch up where everyone is but am muddled with who's who and what's what, so please excuse the generic welcome all newbies and whoevers up now - hope it goes as well as it can. 

 

Going to pull some hair out now....... 

Pots

 

Jackpot
Member

Re: Starting chemo in September???

Hi barbs/everyone
Have sent pm so u know it's a genuine request...looking forward to sharing experiences as we all go through this it's nice to not feel alone...I'm day 6 fec 2 and not feeling too bad right now, currently at the hospital waiting for a radioactive jab for a pet scan and hoping for the best... Hope you feel better soon x
Jackpot
Barbarella63
Member

Re: Starting chemo in September???

Hi jackpot just a quick welcome as I am day2 FEC#2 and feeling a bit pants to be honest!! You need to click on the Facebook link https://www.facebook.com/groups/Startroopers/ to request an add then message one of us on here with your real name so we know you're genuinely on the forum. You are welcome to post as much or little as you like everyone is different, be warned there's humour dodgy wig pics scary haircuts and lots of advice and support. Hope you're not offended easily the language is a little colourful sometimes lol barbs xxx
Jackpot
Member

Re: Starting chemo in September???

Hi lulu34 and elma55

Nice to know there's other tns out there....well not nice to know but you know what I mean!!!!
I'd love to join ur Facebook group, are you on fec-t as well, it seems to be the poison of choice for bc these days

Take care
Jackpot
Lulu34
Member

Re: Starting chemo in September???

hey jackpot

im TN too.... once you get on FB give me a shout as i have set up a TNBC group too which your welcome to join... my FB details are in my profile.

xxx
elma55
Member

Re: Starting chemo in September???

Hi Jackpot, I'm TN and on FEC-T like you xx
Guest user
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Re: Starting chemo in September???

Evening Stars, just a quick good luck for tomorrow for Nikki49 and Blue-topaz. Hope everything goes well. Good luck too for any Stars with appointments. Love and hugs to all xx
Jackpot
Member

Re: Starting chemo in September???

Thanks everyone
How's everyone been with the side affects , I have chemo on a Wednesday and I'm sick Thursday and Friday and ok by the Saturday so it's bearable....it's the last three (taxotere ) that I'm dreading ...anyone on here triple negative?

Jackpot
Guest user
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Re: Starting chemo in September???

Welcome Jackpot we are a very friendly group all going through the same emotions and problems nice to welcome you!
Guest user
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Re: Starting chemo in September???

Elma I have been the same I went of chocolate but love nuts ,I cannot taste salt and my hot drinks have no taste but I supose that is a small price to pay to get us fit and well.x
elma55
Member

Re: Starting chemo in September???

FEC-T FEC 1 Day 7

Hello all, thought I’d look in as it’s the start of a new week, and I’ve been away on the foggy chemo train since last Tuesday.  I was a wee bit sick on the first day of chemo but took the meds as prescribed, drank gallons of water, and touch wood, nothing further to report apart from feeling a little sluggish first thing.  One thing I have noticed is that I do need to eat small amounts on a fairly regular basis otherwise I do start to feel a bit queasy, but I’m eating as normal – have gone off all chocolate except Picnic bars, can’t get enough of them!

 

Good luck to Barbarella, FF and Helen with your dunkings today, and to all Stars with appointments, etc.  Sorry to hear you’ve had such a rough time suzzie-g, and like you surprised they didn’t use your portacath, hope you’re on the mend now and ready for tomorrow.  Hope Icle-V, samjs and hevg123, are ok and keeping those side effects at bay. Welcome Jackpot, glad you found us – there are lots of us having our next cycle of chemo around the same time as you so you’ll have plenty of company.  Sending get well wishes to cinderssarah, hope you’re back home soon.  Also lots of luck to Nikki, Blue and suzzie-g for tomorrow, hope any side effects are minimal, let us know how you get on when you can. 

 

Keep shining all of you wherever you are!  xx

Nikki49
Member

Re: Starting chemo in September???

Welcome jackpot, I'm also having FEC-T poisoning no.2 is tomorrow..... eek!
Jackpot
Member

Re: Starting chemo in September???

Hi there
Thanx for the welcome, I would love to join you all on Facebook aswell x
pips64
Member

Re: Starting chemo in September???

Hi Jackpot welcome to Superstars, sorry you're here but glad you found us. Im having FEC T too. I've had 2 and 3 rd. is on the 11th of October 😞 . We also have a private page of Facebook. Superstars they're a crazy , funny bunch and you're more than welcome to join there as well
Guest user
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Re: Starting chemo in September???

Hi there Jackpot, welcome to the Stars, a place where I know you would rather not be but where I know you will find a great bunch of ladies who will give you everything they have in the way of support to help you get through this. If you are interested we also have an active secret Facebook page and if you would like to join us over there just let us know and we will get you included. Take care. xx
Jackpot
Member

Re: Starting chemo in September???

Hi all

Not sure if I'm doing this right, first comment seems to have disappeared, I'm a sept 4th chemo starter and would love too share experiences with you all

Take care
Jackpot