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Here we go! Neoadjuvant chemotherapy starts 27 April 2015

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Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

How are you now Charlotte? Hope your continuing to improve and not had any post surgical problems. Also hope the pain levels are dropping and manageable. Thinkin of you. Also La-La, not sure when your op is, but all the best and get in touch to let us know how you've fared. X X X 

Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Thanks again ladies. Will def buy a couple of front fastening bras in both D & C sizes. I'll also get in touch with palstic surgical unit to see what advice they can give me too. X X x

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi LaLaand Weannie, you should have a pre-op appointment as they need to do various blood tests and the nurse advises you on support garments etc.  You should also receive a pack with leaflets and a DVD about what to expect - I got that when I first met the surgeon and more info from the pre-op.  So I would give them a ring if you've not heard. They told me to get one bra the same size and one a size larger, mainly because of initial swelling.  I found the usual size fits best, they said I might end up a bit smaller but at tye moment it seems much the same size - but I know they will drop a bit once the swelling goes down!  Good luck ladies! x

La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Plan is for my boobs to go down to a D from an E, but I bought E cup sport bra as they are pretty snug anyway.

Charlotte, are you finding the fit of yours OK?
Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Charlotte and La La,

 

I agree with you LaLa, it's so good to hear that the ladies who have gone before us have come through it so well. Gives us a much needed boost to hear theyre happy with the end result. And my goodness Charlotte, only 4 nights in hospital!! You must heal up so quickly.

 

A big thank you ladies for mentioning big pants. Hadn't even thought about that. Will pop into Primark to have a look. I had my meeting with my surgeon a year ago, and had my vascular ct scan at the beginning of the year. I've had no contact with my plastic surgery team since then. Thought they might have me in for a wee chat to let me know what to expect, but they've not been in touch. I work in the hospital where my op is taking place, so I hope to get over to talk to one of the nurses at some point before I go in. Oh, and thanks for the heads up on the front fastening bra. That was one of the questions I was going to ask. Can I also ask if you bought a bigger size than you thought you'd need? Don't actually know what cup size I'll end up with, but the plan was for a C cup, so do I get that bra size, or go for a D cup? Sorry!! So many questions 😬😬.

 

So glad that you managed get your insurance company to cough up La La. Funny how they take your money quickly enough, but never seem to want to give it back when you need it. When's your op date? Mine's 2 weeks tomorrow and I so get what you're saying about sailing through chemo and worrying about the op. But we'll soon be the other side of it and getting on with our lives. X X Ann X X 

 

 

 

 

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

I meant to say 1 night before and 3 nights after!

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi LaLa and Weannie.  I'm happy to offer any advice if needed!  I was only in hospital for 4 nights in total - 1 night before the operation and 4 nights after.  They just want to allow enough time for you to be controlling any pain, make sure the blood vessels are working, no infections, bowel movements are ok and you can do some physio exercises!  

For,the first day I had a corset from the hospital as I couldn't get out of bed, so I'm sure you could try that instead.  But I know the M&S knickers are particularly restrictive, the ones in Primark are much better.  And I found I needed the Large size instead of Medium which I would go for in normal clothes!   I bought two different types from Primark - the knickers up to the ribs and then some shorts which are a little bit lower - I've found the latter ones much more comfortable and easier to get on!  Good idea about the front opening bras, as I've had the back opening ones which have been ok but sometimes need help.

 

Good luck to you both!  The waiting is the worst, but you will be glad when it's done xxxx

La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hey Weanie, I can't believe how well Charlotte and Georgia have done after their ops... it really helps calm the nerves!

My op is same as Charlotte's.. I was all very calm thru chemo but this week have got really anxious.

Good news is I threatened formal complaint and magically Simply Health agreed to pay the full costs for surgery!
(Funny how when I asked her nicely to have a word with her manager about it she said there was no point.. but when I said I wanted to escalate and asked what formal complaint process was she asked me to wait til she had a word with her manager and magically the waters parted!
Hmm.
(Pays to threaten formal complaint these days... think exec bonuses must be based on customer sat/complaints!!)


Bought my flannel nightshirts and zip front sport bras!
Just figuring out if I can wear a corset instead of big support pants! (nearly put my back out trying to haul into a pair of M&S support pants yesterday!!! Can't imagine attempting that with mastectomy arms!!)
I figure if I wear a corset I can get away with no pants under my nightie which will make going to the loo a whole lot easier!
Need a word with my nurse to check ok.
Seen other DIEP ladies wore corsets/wraps.

Niki xx
Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Ahhh, thanks Charlotte. I'm always wanting to run before I can walk!! My hubby and daughter will have to take over walking duty till I'm fit enough. Pretty fantastic that you were only in for 8 days though. Hope I'm the same! Is it ok if I get in touch on the odd occasion with any questions I have? Can't think of anything right now, but will def have a query or 2 as my op approaches. Just so glad that all's gone well for you. Take care X X x

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Not long for your op now!  As regards mobility, I think you will have to literally 'do nothing' apart from physio exercises and short walks - without doggy pulling on lead! - for the first few weeks.  I have to walk quite slowly because of the tight skin on the tummy area and swelling in the breasts.  I unpacked the dishwasher and needed to lie down after that!  But I was doing quite well at getting around slowly until the pain started from the  hoemotoma and since then I have been trying to do less!  After 6 weeks though, you should be able to do everything, although it's a longer wait (9-10 wks) for aerobic exercise, so I'm thinking I will wait about 3 months until I go back to my flamenco classes and start back swimming after 6 weeks all being well.  I think you will need help with dog walking I'm afraid!  Plan for lots of help and that way you will recover more quickly x

Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

So glad all's gone well for you and that you're pleased with the result Charlotte. Am also glad it's all behind you. My op's two weeks on Thursday, so a wee while to wait for me. I hope I bounce back as quickly as you have though! Can I ask if your managing to be fairly mobile? I hate sitting still for any length of time and love walking my dog and going to jazzercise. Hoping to get back to normal ASAP. Perhaps I'm being a bit unrealistically? X X 

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Ann, all went well with the operation and I came home on Friday.  I've had some pain with a hoemotoma (blood collecting under the skin) and had to go back to the hospital, but they decided it was too small to drain so will just disperse in the next few weeks.  I've got some codemol so all should be ok pain wise now!  But generally, I was really glad to get it over with nd am pleased with the result too.  How are things going with you? Charlotte x

Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Charlotte,

 

Wondering how you're getting on after your op. Hope that you're recovering quickly and doing well. Been thinking of you. Ann X x

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Ann,

Thanks. I'm going in today and the operation is early tomorrow.  It's a nice small hospital at least and the care seems good. Charlotte x

Sissylw1980
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Bernie, sorry for not replying sooner. My chemo doesn't start until January, however the added worry of migraines is something I can do without as when I get them they are so debilatating! Sissy xx
Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Flamenco,

 

I know it's getting very close to the date of your op. Just wanted to say good luck and I hope you're up and about as soon as poss. Ann x x 

Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Sissylw1980, I had terrible migraine when on thd first 3 cycles of FEC T. It would start within 4 hours of chemo followed by sickness and nausea. I had a cocktail of antiemetics oral and intramuscular. On occasion I was going to be admitted in the early hours but there wasn't an isolation bed so the doc came to me at 3 in the morning to administer the antiemetics and pain killer. I am certain the FEC would have been better if I did not already have the ongoing condition. Before I started the Onc said she had removed everything that is known to cause/irritate headaches/migraine and px me the strongest antiemetics in the hope I would be ok but unfortunately it didn't work. I continued to take my daily Migraine preventative meds and rescue ones but nothing worked I just had to ride it through! When I switched to Dox for the last 3 the migraine stopped and I have not had one since July which is amazing! Are you having trouble with them during chemo or about to start chemo?
Sissylw1980
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Bernie, sorry to jump in, I've been reading your thread with interest! Regarding your migraines, I also get them and they're linked to my monthly cycle. Did you have a lot of trouble with them when going through your treatment? Sissy xx
Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Thanks for the welcome Bernie. If I were you I'd stick toTeva. Wish I had, although the Mylan brand is working a treat for me at the mo. X 

Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hello bassa7676, I'm not thin and had quiet a few side effects the worst being on Dox that virtually rendered me unable to walk. I was relatively ok with the Fec other than it made my migraine unmanageable. Interestingly I have not had one migraine since the last Fec. Before Chemo I had them regularly! I suspect the oestrogen being 'switched off' is the reason the Migraines have stopped. There has to be something good out of all this!😊 x
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hello Weeannie1 welcome to our little group. I have just had bilateral mx but not having reconstruction yet. Will start radiotherapy soon. I've just checked the brand of my Tamoxifen it is Teva thankfully I have only been taking it for a week. Shocking re your insurance LaLa! x
Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi La-La,

 

No , I wasn't slim to start with. When I found out that I had to have chemo, I immediately thought that I'd be ill and lose a lot of weight, so I actively fattened myself up before hand. I had very little side effects other than a morning sickness feeling and fatigue, and to stop the slight nausea I ate whatever my body craved. And yes, my body craved salt and vinigar crisps, marshmallows and cake 😟. This meant that I had already put on about 10 lbs by the end of chemo from my diagnosis weight. So now I'm about a stone and a half from that weight when I factor in the tamoxifen weight gain. Quite the chunky monkey now!! But i know that I need a good bit of fat from my waist area for my op, so have decided to let things be till after that's been done. 

 

Nice to know that there's another brand of tamoxifen with few that I can try if this one start to give me gyp. 

 

Take care ladies. X

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Thanks for all the advice.  I see that I've been given the Teva brand of tamoxifen so it's reassuring to know that most people found this ok.  I've already put on a stone since diagnosis so I'm hoping it won't get any worse.  That said, I didn't have too bad side effects on chemo, so maybe the weight gain helped. Still, I may need an oophorectomy in a year or so, because of my BRCA2 gene result, so I will be going into the menopause one way or another!  

bazza7676
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi, 

 

I'm sure I read that people who were overweight have fewer SE's than thinner people.  

La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

3 of our group suffering badly from flushes/aches, seems to be worse for the thinner older ones of us again for some reason. (FEC seemed rougher on slimmer ladies... my onc said may be down to having less 'resources' available. I do think the ones of us with a bit more meat on our bones seemed to have less or zero nausea. (I had absolutely zero, I am 3 stone overweight!!)
Be odd if obesity is a contributary factor in giving you cancer but subsequently helps you get through chemo!)
(Weenie I know you said you had put on 10llbs but were you very slim to start with?)

I am not on Tamoxifen yet, still in T part of chemo (2 more weeks to go! On Paclitaxel which is pretty gentle but I feel more tired and less focussed as each week happens! (Wasn't the most focussed person before! 😉

Having Herceptin 3 weekly for a year.
That makes me feel a bit achey a few days after (like 'exercise achey', not unbearable)

This and the conversations going on amongst the girls in our group has spurred me to do my homework on brands.
One of our (younger) girls is on Activis and says zero SEs bar a bot of trouble sleeping.
I fancy that!!!
Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Been on tamoxifen since August last year, and it's been a bit if a learning curve. The first brand I tried was Teva and this is the one that most of the ladies on this site seem to prefer. Was fine for a wee while, then the hot flushes started to really get me down and I changed to Wockheart brand. Big mistake! The flushes were really awful, the joints in my hands and feet became very sore and the sweat was running down my forehead and back. I tried both of these brands for 6 months each and decided to go back to Teva, but unfortunately there was none to be had from any of the pharmacies that I tried. I actually came on this site to find out if anyone else was having difficulty getting their preferred brand, and one of the lovely ladies told me that she had researched tamoxifen brands and that the one one with  least additives was a brand called Mylan. My local boots managed to source some fro me and it's been absolutely fantastic. I feel more like my old self than ever. I still have the odd hot flush, but mostly in the evenings. I have gained about 10lbs, but hope to get myself sorted out once my op is over and done with. The joint pain is still an issue, but that is probably more due to my age making it worse than it would be for a younger person. Hope I've not put you off!! There a quite a few ladies who have no side effects at all, so here's hoping you're one of them. And I still have a fantastic life for the most part. Just this flipping cancer malarkey is the gift that keeps on giving x x

Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi there.  That's really bad LaLa about the price increase on your insurance and having to pay extra for your surgery too.  I think the insurance companies are very good at weedling their way out of paying up.  And it seems you get the same service on the NHS - I was even sent to a private hospital for an MRI scan as it was the only one in the region that had a breast MRI scan!  And it was lucky they did the scan as they found more cancer which changed my surgery from a lumpectomy to a mastectomy.  It sounds like you might be better off going with the NHS - maybe you can have the operation on the NHS but in a private hospital?   At least that way you would get something out of your insurance, but either way you don't want to delay your operation.  

Im sure I will have my hands full with my 2 and 6yr old daughters after the operation.  My husband is very much a "doer" thankfully.  He's good with the kids and cooks good food, not so keen on cleaning but luckily we have a cleaner!  My mum, sister and friends have all offered to help out so hoping I can get them all to rotate in helping out in the first few weeks.

I'm waiting until after the operation to start my tamoxifen as there wasn't enough time in between recovering from chemo and having surgery.  Also, they said you have to stop tamoxifen 4 weeks before surgery if you're taking it, as you said because of the blood clot risks.  By the way, how are you finding the tamoxifen so far?  Did you have any problems with insomnia, hot flushes or weight gain?  I'm a bit worried about the prospect of more side effects from drugs that I will have to take for the next 10 years!  But hopefully it won't be too bad and side effects will settle down.  Xx

Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Thanks for the welcome ladies. Been looking forward to this op for so long, but just feel so jittery about it! I'm up in Aberdeen, so no choices for me. There's only one large hospital which is Aberdeen royal infirmary, so that's where I'm booked in to. It's got a fairly good reputation, and I've got a lovely surgical team, so really have nothing to worry about (she says, fingers crossed 😬!) Hoping for a C or D cup when it's all done and dusted. Got another 8 weeks to wait, but know it'll pass quickly. Your op is quite soon Flamenco and with two little ones to care for while your recovering, your def going to have your work cut out for you. I hope you have friends and family to help while you recover? I'm 52 now with a grown up 26 year old daughter, so she's said she'll help out after the op. My husband is a trier, but ends up doing everything wrong (on purpose I think 😉) so it'll be good to have an extra pair of hands. Are any of you ladies on tamoxifen? Wondering if we have to stop taking it because of the risk of blood clots while in hospital.

 

Think they've got a bloomin cheek asking you for a top up on your insurance La-La. And doubling your monthly premiums is a disgrace. Speak about being between a rock and a hard place! X x 

La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Where do you live Ann/Weanie?
Which hospital are you having surgery at?
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Just found out my 'super surgeon' chatges £635 over my health insurer's set price for recon! So either I stump it up or try to flip to NHS for it.
No harm asking for NHS but a bit peed off as I suspect I won't keep the same date, and just annoys me that they won't take into consideration that by doing it in one surgery rather than 2 or 3 they will save thousands!

I am not seeing much benefit from having private insurance to be honest.
AND they have double my monthly premium to £135 for the Oct renewal.. talk about unethical!
I'm having a word with FSA to see if there are any rules around hiking up premiums mid treatment!!

Weanie, welcome to the Boob Buddies! Happy to chat 🙂
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Yes of course, happy to let you know how it goes.  I'm quite nervous about it too, especially with two young kids to manage with a long recovery.  But hoping that I will be okish after 3 or 4 weeks at least.

LaLa - I'm glad to hear you're getting something out of the operation for yourself, good idea!  I think I was so nervous about the whole thing that I didn't know what to say when the plastic surgeon asked what result I was hoping for!  I said I just wanted to look the same, but he did tell me that with a double recon I might end up a little smaller.  I've never wanted any kind of plastic surgery so it seems strange, but I know I will feel a lot happier doing it all in one operation, despite the long recovery. 

Weeannie1
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hello ladies, hope you don't mind me butting in. Due to go in for bilateral mx with immediate DIEP reconstruction on 2nd December, and I must admit to being worried about it. Hoping I can pick your brains on the odd occasion? Have been waiting for a long time (finished active treatment a year last month) and this surgery is elective, hence the long wait!! X Ann x 

La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Meeting with plastic surgeon went well!
BMI not an issue.
Ooh we are having the same op! (not many of us double bubbles about;)

I said I wanted them perky (gone droopy with age) and he said 'Do you want me to lift them as well then?' and I said 'Bloody hell yes!!!'

So it looks like I could end up with the Tatas of a 20 year old after all... AND a flat tum! Bonus.
He advises D cup (I'm quite broad).
Quite excited now.
Operation looks like last week Nov/first in Dec.
Hopefully I won't be in hospital on 11th Dec... my 50th birthday!!!

Will pm you x
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi LaLa. Good to hear from you. That's a long time to do chemo, not surprised you're fed up, but such a relief it's nearly over! I finished mine on 9th Sept and now have my op planned for 10 Nov. I'm now having a double mastectomy with double DIEP reconstruction in one operation, so definitely possible! It turned out I'm a BRCA2 carrier, so I've decided to opt for preventative surgery at the same time. My op is at East Grinstead as they don't do DIEP in Brighton, it involves quite a big team of surgeons so good to plan ahead. But the good thing is that it's all done in one op like you say, and it's not much extra recovery time compared with a single recon (only an extra week and half an hour more in surgery time).
In case you want to join us, we're now talking via a private FB group (just 3 of us). If you want to join, send me your email address privately and I will send you a FB request - if you have a FB account. But no worries if you wd rather not get the daily messages, as I know you have a lot on your plate. We can always just do the odd message on here when you feel like it x
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Bernie! Sorry, not been on here for AGES!

Well, I am STILL on chemo because I had 4 x EC followed by 12 weekly dose of Paclitaxel. Nice because Paclitaxel has none of the SEs of Docetaxel... but means my chemo extended to 6 mths! Fed up of it now but racing towards the end... only 3 more weeks! Last one on 22/10, woo-hoo!

Off to see my plastic surgeon in Charing Cross this afternoon. My one in Basingstoke only does the LD Flap recon and I don't want that I need a bilateral mastectomy, and my somewhat conservative surgeon refused to do recon at same time as mx, (was talking 3 separate operations over 12 months!
B*gger that.)
If I can I want this all sorted in one op... one anaesthetic, one recovery!
Around 80% of recons are now done at the same time as mx.

Fingers crossed I have not put on too much weight during chemo to rule this out!!!!

How are you all doing??
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi just though I would post in here and see how we all are. I know some of us have been taking elsewhere but just wondered how you are getting on LA LA and everyone? xx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi there,
Glad to hear you're feeling a lot better now Bernie. The massage must have done you the world of good too. The masterclass sounds good, I'm booked into my basic workshop next week, so it would be good to hear how your one goes too. I guess the counselling could be helpful if there's anything you find it hard to talk about with family or friends, but then there might be things you're not ready to think about anyway. I know one thing on my mind is the gene test. I've asked for a referral, as I want to know for my children and close family. It's unlikely that its genetic in my case, but I know sometimes the result can be inconclusive (if you have a gene mutation that not much is known about) and then what do you do with the result if it's positive. I think you have a counselling session before that test anyway. I wonder if anyone else has considered taking the test?

Hope all goes well Bernie with the masterclass! x
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hello ladies hope you are all ok? I am having a much better week this week had a nice day today lovely complementary therapy foot & leg massage. It was heaven! I have been walking every day that I feel ok and for some reason my feet hurt. I'm thinking its the annoying steroid weight gain making my feet scream at having to carry the extra weight!! I then took the bull by the horns and went to a cancer support centre for a look round. I booked on the looking good master class, yoga and goodness knows what! I did feel they were a bit pushy making me sign up for a counselling session! Has anyone else done this? I feel uncomfortable about it and think I will ring and cancel! x
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Glad you are ok Hannah. I think the dreams maybe relating to bring out of control of our current situation as they reflect trying to escape from somewhere?! Flamenco I will send you my name and change my settings for a bit as they are set to friends of friends only currently.
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi flamenco I have sent you a private message with my facebook name. Don't think the dreams are related to the stay in hospital.... Just generally I am around hospitals a lot at the moment xxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi there Boob Buddies! Glad to hear you're ok Hannah and feeling more recovered from your hospital stint, but it sounds like you're having some anxious dreams after that experience. I had a few dreams about my hair coming out and that I woke up with a completely red eye (I did get a blood spot in my eye, but all gone now!) Hope Glastonbury is great, I'm sure it will be whatever the weather!
I looked up the FB group problem and realise that I will need to invite you to join the group. I've had to make it a secret group now, otherwise it would appear on your friends' newsfeed when you join which you may not want (not everyone in my FB pages knows about my diagnosis, so best to avoid this!) So if you're happy to give me your FB names, I can then invite you all to the group and we can have our secret group! Xx
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Yes Bernie I have weird dreams... Last night I was running from police around a hospital and then trying to get away in a canoe on a river close to the hospital I had to drive he canoe like a car....?! Very odd xxx
hannah203
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi ladies
Sorry have been quiet and not there to support you after your disappointing results flamenco. At least there is a clear plan of action now. Glad you tried the support group I know what you mean about the AA meeting style, sometimes its a bit cringey but its nice to hear other peoples stories. Glad the children's party went well, a couple of days before chemo I went to a 4th birthday picnic and was running around with the kids All day - couldn't do it now!!!

I am very excited for Glastonbury 😄 I am getting everything ready. Hopefully weather will improve. Love the boob buddies banner idea he he. I have said to people look out for me I'll be the one waving a green wig around in the air haha.

I had a look for the Facebook group but couldn't see it. I use a fake name on here in case people I know stumble upon the forum somehow (I have had a problem with cyber stalking/bullying before) so will reveal my true identity there 😉 xxxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Yes, not sure what's wrong, will fix it though - luckily my OH is a techie!
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi can't seem to find Boob Buddies? There are a few groups with that name but for breast feeding or that are in America x
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Thanks LaLa and Bernie for sharing your diagnoses, S it helps me understand a bit more the differencing treatment, though like you say LaLa it's sometimes more about what's right for you and how you want to feel at the end of it. I need to do plenty more homework about the reconstruction side of things, too many options it seems! Xxx
Flamenco
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi there LaLa and Bernie. Good to hear from your both again! I know what you mean LaLa about spending too much time talking / thinking about cancer. I feel like it consumes half my day, with telling people about what's going on, reading things online, appointments and support groups! Maybe the FB page will be easier as we can just post one line messages when needed etc (hard not to get into a monologue sometimes!) I've set up a Group within my own FB page, as I couldn't seem to set up a new account without deleting my old one (you need a separate email address I think). At the moment, the page is open to public for searching but closed to them for viewing our postings. Once we've all joined, I can then make it completely secret if we want. It's called 'Boob Buddies', so hopefully you can all now search for it and join. Let me know if it doesn't work for any reason! I haven't posted a main picture on there yet, so feel free to add! Xxx
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

PS: I'm chemo first because Eric (big noisy lump in left boob) is G3 Her2+
Ernie (my little quiet lump in right) is Her2-
Both are progesterone /oestrogen + (hence 10 years Tamoxifen)
My nodes were negative.

Doc is pro bilateral mastectomy as he is not keen on radiation therapy on both breasts.
I am currently E cup and want to go down to a C with the recon. In my head I imagine it is easier to feel any recurring lumps in smaller boobs.
And friends who have had lumpectomies then a mastectomy tell me mastectomy in some ways is easier recovery than lumpectomy.

I think at the end of the day we just need to do a little homework then follow our instinct.
Such a personal thing, and we are all having such different journeys.
What is good for one person is not necessarily good for another.
Just ask lots of questions so you can make an informed decision. xx
La-La
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi girls.
I'm doing ok
Just on EC (4x 3 weekly) so I think it must be gentler than FEC, as I am only having 2 really tired days and no nausea/headaches. Having Paclitaxel x 12 weekly afterwards.
Can't believe how fast the 3 weeks passes, have 3rd cycle next Thursday.

I am having to work throughout chemo, as I am self employed (run Europe as an agent for a Canadian software company)
Have a guy working for me who is really helping me out each week one as I am so not up to it that week. I can't handle stress right now, and some of the projects we are delivering are very stressful.

I am single mum too of an 11 year old (his dad has no involvement)

Whilst I wish I'd had critical illness cover so I could have taken time off, I do wonder if the fact that I have to work and look after my boy is actually helping me get through?

I will fish all chemo early Oct then having double mast and recon at the same time if I can. I just want one 'big bang' op rather than faffing about with expanders over another couple of months then having yet more surgery to get over. Consultant not such a fan but is doable. Have a meeting with him soon to discuss all options.

My lumps are shrinking well from chemo, onc says lumpectomy is an option, but I feel safer with mastectomy, just want all the offending breast tissue scooped out! (I have lots of spare belly fat they can recycle!!)

I have to ration the time online now as all I was talking about was cancer, and it was exhausting me. So I am not so vocal now.

Hope everyone is doing ok?

I cut my 89 year old father's lawn yesterday (2ft high!! I have 3 USELESS brothers!)
Dad tried to tell me off ('grass is wet/needs a strimmer/you should not be doing this!') but I was fine and it needed doing.
For all his grumpiness he was delighted when I'd finished. That was his father's day present.

I need to exercise a bit, have put on 1kg!! Was already 3 stone overweight but am apple shape with slim legs so manage to hide it... but weight is a contributory factor to cancer so I have to sort that out.
Going to start Slimming World next week (not to lose weight at this stage, more to learn about eating more healthily)

All feels a bit surreal this cancer malarkey!

Crap rainy weekend as usual for Glasto! Hope Hannah has fun and takes lots of loo roll and wet wipes! I'm of an age now where I'd have to stay in a Winnebago!

Have a hood Sunday ladies xx
Bernie610
Member

Re: Here we go! Neoadjuvant chemotherapy starts 27 April 2015

Hi Flamenco feeling like you were at an AA meeting made me chuckle! Not that I'm ridiculing AA thank God it's there for people who need it. Glad the birthday party went well know what you mean, children's birthday parties are exhausting on their own let alone with this damn thing. Your right I bet re the chemo-it must be the node involvement. I've got a selection of anti-sickness drugs now and painkillers due to the docs trying me on all sortsI could make a fortune I'm sure (only joking) dreading session 4, still it means only 2 left. I see the oncologist on Tuesday so will discuss it all with her, I'm not sure I could do this again so pray I never need to. I've had some weird dreams recently has anyone else? This morning I dreamt I had fallen in a fridge sideways that was full of water and I was drowning, I could see the light at the top and open door but couldn't reach it. I was just drifting in and out of sleep as had already woken up once I told my self it's a dream wake up! Very weird and unnerving!! How do you want to do the Facebook thing? thanks for offering to set up the group page. We could send each other other a private message with our links/names?