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February 2019 chemo starters

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Re: February starters 2019 - yes, we rule!

The range of info we get told about this radiotherapy bleep is a joke! I am 46 and was told ages ago I would have 25 sessions. The breast surgeon said this was due to the tumour being close to my chest wall so it needed an extra boost. Then last week it changed to 20 sessions and I wasn't going to argue with that! As for Tamoxifen, I've been told I will start taking this when radiotherapy has finished.

 

All I've got to add today is I will never take my eyelashes and hairs in my nose for granted again. Just back from a walk where several flies decided to launch themselves straight into my eye and my nose wouldn't stop streaming. End result, me looking like I've been bawling. Come back hairs!!!

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Re: February starters 2019 - yes, we rule!

Hi everyone 

Finally caught up with everything,  I know I read some prior to and after surgery but I don't think too much stuck in my fuddled brain. After feeling fairly awake and with it over the weekend I think I'm paying for it now. So it's a case of taking it easy today but won't forget my exercises🤸‍♂️🏋️‍♀️. 

Ocean21, like the idea of an online reading group, it would be nice to stay in contact and have something else in common other bc. As with some of the others though I may have to wait until this Barrying bc is over I haven't read a book since my diagnosis. I can't even concentrate on one of my 'holiday reading' books📚☹ and they're easy reading. Thank for all your beautiful photos.

Deano I know it's difficult, but try to see the input of a guide wire as a positive thing. If your Gremlin was still big the surgeon wouldn't need it so it must be fairly small. Sorry I don't know/remember what size your lump was or is. I had a titanium marker placed in my Gremlin during my initial investigation and biopsies so that it could be easily located during surgery. On another point, this may be of help to you aswell Edinbird, if the weather ever warms up or you get fed up with wearing tops with button openings I've discovered that I can step into the cheap and cheerful Asda swing vest tops and pull them upwards and slide my arms in. They're the one that cost £4 or£6 or so much for 2. Sorry can't remember exact cost. Pop a cardigan on and you're ready to go.

What an array of things we are told about our treatments. The relationship between age and length of time receiving radiotherapy seems rather odd. At  62 three weeks should be the number for me. I'll let you know but that won't be for a while yet. Who likened it to a game of Bingo? Lottery would sum it up too.      

Right, my tummy is telling me it wants lunch, so I had better oblige. Need to pick some lettuce and it's raining🌧🌧🌧. Quick dash outside it is then. 

Have a good day everyone, or at least the best you can manage if you are feeling under the weather. xxxxxx

 

  

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Re: February starters 2019 - yes, we rule!

Hi Marlyn, 

thanks for sharing the story of you chatting to the lady who is having 18 cycles of chemotherapy 😳

I still have difficulty absorbing this fact.

18 cycles - a very sobering thought.

I have been reading up on Tamoxifen as the oncologist said that I start taking this medication once radiotherapy starts .

 I also re- read my notes to see what the % benefit is from taking this hormone therapy and it’s actually more than the chemotherapy (!!!!) at 5 and 10 years so I will give it a go.

 Off to do some yoga stretches now before I flip 🤪

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Re: February starters 2019 - yes, we rule!

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Re: February starters 2019 - yes, we rule!

Thank you, nice to know in not alone

 

Xx

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Re: February starters 2019 - yes, we rule!

Hi everyone 

Just having a quick flick through today's posts. I'm knackered and slept most of this afternoon so hope to catch up properly tomorrow with everyone.

Edinbird, I was told on Friday not to drive for two weeks and keep the initial trips short. You don't need to tell your insurance company about surgery.  As for starting dates for things I'm taking one step at a time. I have an appointment with my surgeon on 27th June.  

Rosina, sorry about the delayed chemo. And thanks for the tip about lavender. I've got fresh and dried to sniff.

I'm going to read the rest of the posts now. Oh maybe not Chris has just returned from D(r)download! Hope he knows how to use the washing machine. Love you all xxxxx 

Love you all. xxxxxxx  

 

 

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Re: February starters 2019 - yes, we rule!

I've lost the plot.  It has just taken me about 10 zillion hours to change my sweaty stinky bed and to put the green bin out.  I'm knackered!  Think I am having 15 sessions of r/t but then I just turned 60 in April.  Hate saying that age.  I feel about 3 at the moment.  With the driving I just waited until the consultant appt 2 weeks after op when dressings were removed and they said I could drive.  Didnt even think about telling insurance company.  Saying that I cant really remember as it was so long ago as I had 3 ops.  All a bit of a blur like everything else at the moment.  I really dont think I could have another single chemo, ever ever ever again. Hate every minute of it.  The thought of 16 just makes me feel so sick,yuk!  My toes are really strange very red and hot and all the skin is peeling off around the big toes but they are not numb so I suppose thats a good thing.  My fingers feel like they have been stamped on but holding them under a cold tap gives me some relief.  Im waiting for all my teeth to fall out as I keep eating chewy mints too but I am trying to suck not chew.  Ive found some bras on Amazon that are nursing bras and separate the boobs so when I look down one doesnt seem so full and with clothes on its really hard to see that one is bigger than the other.  I can move big girl to the side and little one just sits nice and pert.  Hopefully big one will shrink a bit when I lose a bit of weight and I wont need more surgery.  Wonder why you have had to have so many r/t sessions Maryln.  Nearly done for you now.  Im dreading mine especially to my neck.  Must go and have some dinner.   I'm starving again ......

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Re: February starters 2019 - yes, we rule!

Ugh.  That poor lady Marlyn!!!

 

My chemo mate from the hospital had 16, but it wasn't quite as bad as that sounds, as she had 4 ECs fortnightly, which she didn't much like, but then 12 weekly fairly low dose Taxol which didn't seem to bother her at all, side effect wise.  She was full of energy, away every weekend, working every weekday except the Tuesday when she had the actual chemo....

 

But 8 full FEC and 8 full T?  I'd be ready to throw myself off a cliff partway through that lot!!!

 

Edinbird re driving, I was told that I should call my insurers to let them know I was having/have had surgery, and that whether or not they place any restrictions, and for how long, varies according to the type of surgery.

 

My experiences back that up, because I've had the same insurers (AA) for years, and with my hysterectomy they said I couldn't drive for 6 weeks - but with the lumpectomy they didn't give me a time, they just said I could drive as soon as my doc was happy for me to drive.

Doc told me to go for it as soon as I felt up to it.  Which I certainly wasn't at first.  I ended up driving short distances from about 2 weeks after the op and slowly built back up.

 

 

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Re: February starters 2019 - yes, we rule!

Thanks Ladies, re. Your responses regarding radiotherapy.

You have made me laugh, it’s like flipping bingo 🤪

I am definitely speaking to the radiologist as I suspect it’s got more to do with the severity of lymph node involvement than age. Don’t think the oncologist wanted to tell me this as he is baffled by the fact that I go in saying I feel fine ( no temperatures, feeling unwell etc) and that I have hiked 16 miles the day before and then the blood test results give him a different picture so that he keeps stressing the temperature taking and A@E etc. Nurse who was in there with us was telling me that I have been extremely lucky. She was also impressed with my hair 😀 she also admired a ring I was wearing and chatted to my husband about healthy eating. She was lovely, put me at ease. The oncologist is like a textbook, and a bit distant.

 I am back to watching ‘Line of Duty’ to distract myself.

Hugs,

Rosina

ps. The other thing that makes me chuckle is a friend who wanted to know what I was going to do for my 50th ( she had been bugging me for like 4 years before). Well that got taken care of nicely 🤪 no forgetting this year now!!!! 

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Re: February starters 2019 - yes, we rule!

I'm 53 and am having almost 5 weeks...( thus is my last week) who knows how it's worked out.....

 

sat chatting in waiting room today with a lovely lovely lady who had 18 cycles of chemotherapy??!!! 8 fec and 8 T .....oh boy did I feel for her.....xxx

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Re: February starters 2019 - yes, we rule!

Hi Rosina xx

 

You must be so frustrated no wonder you’re upset. And the nonsense about age and rads... I wish that everyone had the same protocols or at least the same advice about them! I just wish I knew when mine are starting and how many. But I can’t know that until we know if the op is a success. But even the surgeon telling me 8 weeks and the oncologist 6-8 weeks is annoying! I want to know what’s happening for the summer, for my birthday, wedding anniversary, new job, I want to make sure I can get on the moving on course at Maggie’s... so much to consider.

 

It’s got me thinking about my op... how long before any of you started driving again? The surgeon said I’d be signed off for two weeks. Looking online it looks like you need to tell your insurance company, what did yours say? I’m worried I’ll feel able to but the insurers won’t let me!

 

Ear is still being a pain too... less general pain but it’s constantly blocked so the pressure makes it ache. Fed up of it.

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Re: February starters 2019 - yes, we rule!

Rosina,

I'm 47 and I'm having 3 weeks, or that's what he told me. It all so different in all areas. x

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Re: February starters 2019 - yes, we rule!

Oops!

 

I fell foul of the naughty words monitor Smiley Happy

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Re: February starters 2019 - yes, we rule!

I have 4 weeks and I'm 52.  I swear they just make this **bleep** up as they go along!

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Re: February starters 2019 - yes, we rule!

254C5D42-4339-4018-9BD1-C182CF4E5156.jpegWhen upset crush and sniff lavender

Hi Ladies, 

yes I was upset and kept tearing up. I am OK now.

The other bit of news that took me by surprise was that as I am under 50 they are prescribing 4 weeks of daily radiotherapy as opposed to 3 weeks ( if I was over 50).

H1 says it’s up to me if I have 3 or 4 weeks and nobody can force me. 

Oncologist said that was a discussion I would have with the radiologist.

 I was really hoping it would all be over by August.

 Thanks everybody for your kind words, they really do make a difference. I used to play snakes and ladders at school with the kids, now I am living it 🥴

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Re: February starters 2019 - yes, we rule!

Rosina, I feel your frustration and disappointment. Especially big Nettie cuddles for you today. 

Seaside, ouch. No more mints eh? 😘 x

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Re: February starters 2019 - yes, we rule!

Rosina so sorry you have been delayed again.  I bet you just cant wait to get this out the way.  Big Hug x

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Re: February starters 2019 - yes, we rule!

Rosina,

Sorry to hear you've been delayed. I hated it when I was delayed, but it did give you another week to feel human again.

Take care of yourself, I know how disappointment it can be. xx

 

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Re: February starters 2019 - yes, we rule!

Oh Rosina, that's a pain. Poor you. I know you're keen to get it over and done with. Bloomin neutrophils!

 

One of the ladies I met at my local support group has had her last 2 treatments delayed as well. On top of that, they have added an extra T session as they have reduced her dose to 75%. She doesn't seem to mind too much but for me the thought of having 4 T sessions instead of 3 would have been a no no.

 

I am off to the dentist later to replace the temporary cover which has broken off my broken tooth. It came off while I was chewing on a mint to revive the ever bland tastebuds. That will teach me!

 

Hope everyone else is having a good day.

 

Sar xxx 

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Re: February starters 2019 - yes, we rule!

Oh Rosina I'm so sad to hear you have another delay Smiley Sad  you seem to bounce back so well fitness levels wise every time with your big walks and stuff but your blooming neutrophils aren't having any of it!!! Grrrr!!!  hopefully it is only the one week this time and then you will be all wrapped up x

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Re: February starters 2019 - yes, we rule!

3ED2CC48-5DEA-4307-AA24-280C290F4F2C.jpegPoppies in Priory Park, Reigate

I have had another delay, neutrophils at 1.2. Chemotherapy bumped to next week. 

H1 came with me . He is very good. Feeling emotional 🥴

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Re: February starters 2019 - yes, we rule!

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Re: February starters 2019 - yes, we rule!

Hi everyone

Just popping on for a quick catch up before bed time, as is becoming a habit Smiley Happy

 

Deano, great to hear from you.  Although not so great to hear that T knocked you for six for a full week Smiley Sad  Seems par for the course, though - I think that all of us have found T blooming hard work!  Hopefully you are now on the up and up.

 

I have also lost near enough all my eyelashes (got about 3 stragglers left on each eye), and have very watery eyes as a result.  It is flipping annoying but I guess it is just a waiting game until they decide to come back :/

 

The thing I'm really worried about are toe and finger nails.  Mine have all started to low level hurt over the past day or two.  And I've read too many horror stories about people who are a month or more past their last chemo and suddenly all their fingernails fall out!  Smiley Surprised  fingers crossed!  (Gently so as not to dislodge the nails Smiley Very Happy )

 

Oh Rosina I love that quote from the window
( ‘ Weeping may endure the night , but joy cometh in the morning ‘.).  It's basically bible-talk for "hang on in there girl, it will get better".  Which is something we all need to hear from time to time throughout this process!

 

Susie, my surgeon said exactly the same about drains not being necessary and fluid reabsorbing.  But she blooming gave me one anyway!  In the end though hardly anything actually drained into mine and they took it out after a day.  So I guess she could have not bothered....

 

Daidydi, thanks for your kind words (made me blush Smiley Happy ) and did you say that your brows and lashes are already starting to grow back?  That's really encouraging.  I do miss my eyelashes.
Hope the 'roids aren't keeping you up all night.

 

Susie (again),  your thing about anaesthetic and suddenly waking up in a different room and it's all over really made me laugh.  Because it reminded me of how confused I was the first time that happened Smiley Very Happy 


I know now that that's how they operate, they get you chatting and distracted and boom!  You're out cold! 
But the first time I didnt know that, I thought they would count me down like they do on the telly so I would know when it was coming. 
Instead, one of the anaesthetists asked me a question about my holiday and I started answering him in theatre, and then woke up on the recovery ward and continued answering the question!  Then I got really confused that he wasn't there and apparently I said to the nurse "he asked me a question and then walked off!  How rude!".  And she had to gently explain to me that that was about 3 hours ago and he had since finished his shift and gone home Smiley Very Happy

 

All this talk of bras, I could really do with getting a new one.  I've been living in the same 2 post surgery bras since my op in January as none of my old bras fit any more given I'm 2 different sizes.  But now I have managed to lose one of them (how did I do that??) and I need more than one bra to last me till my next op!  After I've recovered from that second op though and I'm all "evened" up, I'll actually be able to wear normal bras again.  Can't wait!

 

Hope your ear is starting to ease up Edinbird?  And definitely don't forget to apply for that "special day" thing.  If the football dates don't work out perhaps there is something else you'd like to do?

 

Hi Nettie.  Thanks for checking in so we don't worry.  Hope you come through the side effects fog soon x

 

Think that's everyone who has been on today.  I hope that all the others are out there living their best lives x

 

I had a fairly dull day today, didn't do much, went to Hobbycraft, got stuck in their car park on the way out for over 40 minutes because there were roadworks nearby which caused complete gridlock.  Thought I was going to have to abandon the car and walk home! 

 

Then when I finally got home I spent hours cutting little people out of vintage magazine ads for collage materials:

20190616_174005-picsay.jpg

 

While watching 6 episodes of the Year of the Rabbit which is funny but very sweary! 

 

I've had more interesting Sundays but the main thing was my taste buds were working, I don't feel utterly exhausted and my nose seems to have finally stopped bleeding.  Woohoo!  Here's to recovery from chemo-bashing!!!

 

Night all x
Another new week beckons, throughout which I expect all of us to continue kicking ass!

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Re: February starters 2019 - yes, we rule!

Hi Susie

Thanks got the update and glad to hear one minute your having a cannula and then your coming around. I am scared as well asI have to have a wire fitted as my gremlin has shrunk and the surgeon needs to trace it down to the lump to remove it not looking forward to fnc and the results but one thing is I couldn’t do chemo again 

keep the updates coming and glad this bit is now over for you and thanks for the top tips on the bra front

Deano ❤️😍❤️😍

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Re: February starters 2019 - yes, we rule!

Hi lovelies, just popping in so nobody worries that I’ve gone quiet. Having my stopping steroids awful slump so in bed but hopefully will pick up later tomorrow (that’s the normal schedule). There is sun shining through the windows......at barrying last! SusieB I am so so happy to hear how well you are doing post op. Don’t worry too much about the swelling. If you feel too mismatched get your husband to get a pack of that cotton wool that comes in long folded piece and pad with that. I did it for a few weeks until I felt more even. Worked well. Before I got the cotton wool I used a folded sock. 😂 

Love you all. Xxx

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Re: February starters 2019 - yes, we rule!

Hi Edinbird and Deano

Quick update on bra front. Hubby just returned with 2x 36C M&S bras, I'm usually 34C. Fits fine around chest and I have set straps so that the bra doesn't rub on the incision. Bad boob fills cup beautifully which is more than can be said for my good boob. Anyone got a spare chicken fillet?☺

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Re: February starters 2019 - yes, we rule!

Thanks for the surgery info Susie. I bought some non wired bras in the sale in Sainsbury’s a few weeks ago but they’re a bit tight already so I’m going to order some extenders off eBay so I can adjust the size if needed. They were £4 a bra so wouldn’t be the end of the world if they didn’t fit but still can’t be bothered to get more!

 

Went back to bed with my sore ear but I need to go shopping and take more antibiotics so better get up. My ear has felt blocked and ringing all morning it makes me feel even more tired. It’s all itchy inside and feels like a load of fluid should drain out not that it would. I was going to sleep but then my mum rang and that was the end of that.

 

In case anyone was wondering I didn’t take the Willow Foundation form in on Friday I hadn’t printed it out and the football fixtures went totally against me the match I wanted isn’t until the end of April!!! I might take it next week when I get my CT results. There’s no rush I can submit the form during my rads but it still wouldn’t quite cover the timescale I need 😕

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Re: February starters 2019 - yes, we rule!

My cushion. Just hang it on your shoulder and the cushion stops your arm from rubbing up against the wounds. Don't know why all my photos seem to come out sideways. 15606926858701074015405.jpg 

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Re: February starters 2019 - yes, we rule!

Hi Deano 

I had a  lumpectomy and full nodal clearance the same as you're having. I don't know if you've read my previous posts but one of my biggest fears was having a general anaesthetic, so the prospect of surgery for me was pretty terrifying. A few weeks ago I was back on meds for anxiety, that's how bad I was. Anyway fast forward to operation day and I reached a sense of calm. I was the same when chemo started, at last something was being done to get rid of Gremlin. Both the aneathatist and surgeon came and had a chat about the proceedure, the anaesthetist asked lots of questions and checked my neck glands, throat, jaw action and several other things. After that it was a case of waiting so I chatted to you lot and played somes games on my tablet, then it was show time. I was taken into the pre-op room where I was met by two medics. One put a cannula in injected me with a relaxant, pain killers and anti sickness meds. I'd already informed the surgeon that I didn't want to chuck up after surgery thank you very much. The other medic put probes on me and fitted a blood pressure monitor to my leg as I have a PICC line. The next thing I was being spoken to by a nurse in a completely different room. The proceedure was over and done with. Most surreal feeling I've ever had. I think because of my anxiety they didn't tell me when they were injecting me with the GA. I had a mask over my mouth and nose for oxygen. She chatted to and carried several observations, bp, heart rate, pain, etc. Then I was wheeled back to the ward. Hubby was back at the hospital by now. Few more checks by another nurse and did the three Ts - toast, tea and tiddle. I don't do tea so had water. My mouth was very dry and remained so for the next 24 hours. Oh and throat was a little sore from the breathing tubes. In for operation around 11:30 back to ward around 2:15pm home by 5:30pm for fish and chips. Your op might not be quite so long as I had volunteered to take part in a trial within the trial I am on. I'll explain in another post. As for pain, I think the discomfort after boob and lymph node biopsies was worse. I've taken paracetamol as there is a bit of stiffness but that's about it.. I started my exercises late Saturday afternoon and tried to move my arm as much as possible. I haven't got a drain which is a huge bonus. Will keep you posted on that one. The hospital also gave me a cushion, donated by the Inner Wheel to use with seat belt, whilst sleeping and anything you'd like to use it for. Can also be used as a neck rest when travelling. As for a bra for afterwards buy larger than your normal size. I bought a couple of post op bras in my normal size but due to the swelling they're too tight. Hurriedly ordered 2 more from M&S next size up 36C rather than 34C which my poor hubby is currently collecting for me. I'll let you know if they fit. Sorry if I've waffled on too much. Upshot is it's true what everybody on here has said surgery is easy after chemo. I'm surprised to say that I agree. Will keep you up to date with my progress. Make sure you take full advantage of the break between chemo and surgery. I was lucky as I had 9 weeks☺. Take care Susie B xxxxx             

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Re: February starters 2019 - yes, we rule!

Afternoon all just checking in to put my two penneth in.  Lizand Sarah I have had far too many side effects to list and am now day 7 post last T.  Re taste buds dont really think you can do anything about it but I am drinking fresh tap water infused with fresh lemon and it does stop everything from tasting like kak.  Debi I have had severe pain in my wounds from surgery all the way through my chemo,especially where the anc scar is. It all seems to swell but it does go down eventually.  I am not due any more chemo so now maybe it will get a chance to heal properly.  I have discovered organic joboba oil which I put on my face, hands and nails in the evening.  It does keep skin really soft as apparently it is very close to the make up of the skin.  I have used Evonail on my finger nails throughout chemo and they seem to have survived for now.  I have used a botanical treatment on my hair, eyebrows and eyelashes and used the cold cap with much success so far.  Even though I have lost hair, eyebrows and eyelashes they seem to be coming back.  Just hoping the last treatment doesnt take the lot!

 

Hope everyone else is ok.  Glad to see some of you with new hair and Rosina you look beautiful just as you are and Implausible Sarah I love love love reading your posts.  Its the highlight of my day.  We are total opposites I have few words as you can probably tell so I love reading your posts.  Susie hope your recovery continues. Maryln you look fab too.  Hope you are ok Nettie.  I am still on the steroids which are keeping me awake most of the night with sweating but they are keeping all the nasty side effects at bay for now.  Take last lot tomorrow so will see what happens then.  Love to all xx

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Re: February starters 2019 - yes, we rule!

Hi Rosina 

My surgeon doesn't feel that a drain is necessary as she believes the body will naturally reabsorb whatever the body produces to protect the area it thinks has been attacked. She just told me to think of it in the same way as a blister forms and if left alone the area will dry out. I currently have a nicely swollen boob, D cup(?) from C cup and some swelling where the nodes were removed. Started my arm exercises yesterday evening and generally moving my arm as much as possible. If the swelling becomes too large and uncomfortable they will drain it at the hospital. After seeing a drain whilst at my pre op chat, different to pre assessment, I'm glad I haven't got one attached. xxx   

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Re: February starters 2019 - yes, we rule!

Hi Debi2

I didn't have breast pain where lump (Gremlin) was but I did get occasional dull ache under my arm from where the lymph nodes were swollen. I had a lumpectomy and ANC on Friday 14th and am feeling fine. Keep in touch. Take care Susie B xxx

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Re: February starters 2019 - yes, we rule!

Hi lizandsarah

I think you've had some replies regarding taste and weight gain. I had 4 rounds of FEC prior to surgery (I'm on a trial) and it took around 3 weeks for taste buds to return properly. As for weight gain I've put on a few pounds but put that down to craving cheese toasties, going off healthy salads and fruit. A few days in France probably added to the weight gain. As you'll see from the replies chemo affects us all in such different ways. Just go with it. Good luck with your last 2 sessions.     

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Re: February starters 2019 - yes, we rule!

Where the quote comes from

I did a google search on the quote underneath the angels feet and it comes from a psalm.

See link.

 

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Re: February starters 2019 - yes, we rule!

Correction, the quote is ‘ Weeping may endure the night , but joy cometh in the morning ‘.

Angel on the left has blues and purples and a star above their head, Angel on the right is yellow and green.

The whole composition is glorious 🤗

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Re: February starters 2019 - yes, we rule!

Quote under Angels :

’Weeping endures for a night, but joy cometh in the morning ‘.

 I am off to walk 🤪

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Re: February starters 2019 - yes, we rule!

Deano,

at one point I was practically living on spinach soup with nutmeg.

Recipe:

300g spinach ( more if you desire)

2 onions 

3 cloves garlic 

veggie stock ( tea spoon of marigold veggie stock in some hot water)

nutmeg.

oilive oil enough to sauté the onions and garlic.

Add spinach, add veggie stock add nutmeg.

Don't over cook, blend , eat.

Member

Re: February starters 2019 - yes, we rule!

Hi All 

Well what a week T finally crushed me last week I couldn’t walk or stand and my tastebuds well what can I say what bloody tastebuds!! Hoping they come back usually 3 weeks later 

Susie did you have lumpectomy I have mine on 10th July and full nodal clearance followed up by rads any updates on your experience is much appreciated.

there are fine long posts and Marilyn you look good is your hair returning after 8 wks?? What about eyelashes and eyebrows I can’t stop my eyes watering I’m wearing sunglasses on full days but look I like a meat fly. 

Anyone anaemic - I am and so fatigued. Rosina do you know any good natural supplements recipes I could use to boost me

hope all of you are recovering from chemo and those yet to have it look after yourselves we’ve come so far and can go a little further

love you all ❤️💖

 

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Re: February starters 2019 - yes, we rule!

Hi Debi

 

I’ve just finished chemo and got surgery next month so I still have a lump! I got a little soreness or aching at times in my breast and under my arm but nothing of significance. I would find that a couple of days after chemo the back of my neck felt a bit swollen and fat but the definition and firmness around the base of my skull would return after another couple of days. It wouldn’t feel painful particularly just like I’d slept funny.

 

I don’t know if that’s any help? My main aches were in my back and pelvis the first time I had the filgrastim injections, a sore lower abdomen for a couple of weeks and then my knees and ankles and legs cramps overall every T cycle.

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Re: February starters 2019 - yes, we rule!

Aha I misunderstood, sorry

 

We have a few ladies in here who had their chemo ahead of surgery , I'm sure they will be along soon to let you know their experiences.

 

 

 

 

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Re: February starters 2019 - yes, we rule!

Hi

 

Thanks for the replies it makes me feel better.  I haven't had my surgery yet so the pain where my lump is concerns me ( i have got it in my head that it is growing ) I think i am going to call my BC nurse on Monday about it and the head pain.  

 

You ladies are great.

Debi

 

 

 

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Re: February starters 2019 - yes, we rule!

Evening all

 

Hope everyone has had a good-as-can-be-expected Saturday?

 

Weather here is still a little off and on but the sun is at least attempting to peek through occasionally.  Not that I have actually ventured out of my jamas or out of the house today!

 

Catch up time before I succumb to the delights of sleep....

 

Seaside.... just be grateful they leave you 3 crisps.  My kids eat the LOT, put the lid back on and then put the box back in the cupboard!!!  Drives me mental.  I think it is because that way they know it will take me a while to notice whereas if the empty tube was in the bin within seconds of the food coming into the house, I'd have a go.  I mean, I have a go later when I find it in the cupboard too, so it doesn't even spare them a telling off, just delays it a bit....

 

Trixielady, swimming is the one thing I can't WAIT to do again, are you nearly at the point where you are cleared for the pool?  Lucky you!  Mid September for me and counting down. 


I guess the one advantage of the short hair will be not having to hang around in the changing room to blowdry it....

 

I hope the docs can get to the bottom of the breathlessness and get you sorted.  It must be frustrating and be holding you back Smiley Sad

 

Was it Patricia Cornwell who did the Scarpetta books years ago?  I used to really like those. 

 

 

Dawww Nettie, that's such a nice thing to say!  I was worrying that I go on way too long in my super wordy posts and that you were all wishing I'd wind my neck in a bit!!  So it is nice to know that you enjoy them x

 

I've never been a fan of using one word where ten would do Smiley Very Happy

 

How is your leaky drain pipe today?  Did your hubby surprise you with competent DIYage? Smiley Happy

 

My other half won't even attempt DIY.  If I need anything done around here I have to throw money at people from the yellow pages and hope for the best. 

 

And I hope your son is getting over (or perhaps even regretting and fixing?) his breakup.  And no they never fully grow up to the extent that you don't have to worry about them any more, I don't think.  I know that my two oldest boys (28 and 29 years old) would be utter wrecks for a while if they split up with their girlfriends.

 

Sonia it is weird the advice the oncos give about hair loss on T.  I didn't even cold cap for my last 2 sessions but didn't lose any more hair.  I only lost hair on FEC, and that was WITH the cold cap.  Yet when I said to mine about how I had heard that you don't lose so much hair with T and I'd even seen a few people whose hair started to regrow during T, he said that definitely wasn't possible and that T was even more aggressive re hair loss than FEC. 

The evidence doesn't seem to back up their adamant position....

 

Hope your pooping situation is on the mend!

 

Lovely stained glass windows Rosina, I can't enlarge the photo on my phone, though, can you tell me what the quote says?

 

I also really enjoyed Line of Duty - I binged all 5 seasons about a month ago. 

 

Susie you struck gold not needing a drain, as they aren't the most comfortable things to get around with.  As for the blue nipple, mine was tinted blue for weeks!  But it did finally fade back to normal nipply colour, so don't worry Smiley Happy

 

Marlyn I love love love that photo of you and your cheeky smile  Smiley Happy  your hair looks really even in coverage and it has come back super fast.  That is so reassuring!

 

I'll try to take a pic of mine.  My scalp is a bit dry so it looks a bit manky. 

20190615_210920-picsay.jpg

 

20190615_211015-picsay.jpg

 

 

 

So all the hair you see is what the cold cap saved.  It is a bit sparsely spread, and there isn't any new regrowth yet in between.  But in terms of the length, that's about 8 weeks worth as well, as it was shaved just after my 4th chemo, and I'm now 2 weeks last my 6th one.

 

I look like Chad Smiley Very Happy

Screenshot_20190615-211446_Gallery-picsay.jpg

 

 

 

Edinbird, sounds like you have had a down day, here's to tomorrow being brighter x

And to our two visitors from April....  lizandsarah, hi.  Yes I have had nasty taste bud issues with T, and I'm sorry to tell you that in my case they got a little worse each cycle.  But in all cases it was only temporary, kicking in on about day 4 or 5, and resolving itself by day 10 or 11 or so. 
Unlike yourself I didn't end up losing weight but gaining, as food was tolerable as I was actually eating it, but the after taste was disgusting.  I could only describe it as feeling like my mouth was coated with clay or grease.  Ugh.  And the only way I could make it go away for a few minutes was to brush my teeth or drink or eat.  Hence I was constantly snacking. 

Different foods seemed to work better each cycle, it is a bit of trial and error I'm afraid.  I was all about cheese on toast in cycle 4 but by cycle 6 I couldn't face cheese at all. 

The one thing  that always seemed to taste nice and relieve the yucky mouth a little was fruit....pineapple, berries, bananas, satsumas.....  oh and also mini twister lollies!

Hopefully when you get past this bout of the nasty taste buds you will be able to treat yourself to some comfort food to get back those lbs you lost (if weight loss is a worry not a bonus!)

 

And Debi2 - yes I had a dull pain where my lump originally was in my right breast, and under my armpit where they removed my sentinel nodes, for a good week after all 6 of my chemo sessions.   My onco did prepare me for this as he said the chemo works against the healing process and can cause recently healed tissue to temporarily "unknit".  So I guess that's what the feeling is?  If you get a sharp or very strong pain, though, I'd call your helpline.... mine was never bad enough to require pain relief.  It was just uncomfortable and noticeable.

I haven't had headaches or neck aches though.

 

I think that's everyone. 

 

As for me I've had a busy day prepping index cards by throwing paint at them through texture stencils and all sorts, to make backgrounds for some collages I want to pull together.  It was tremendous fun to do something creative for the first time in a month or so.  But tiring as I was stood up throughout and my legs are now very tired and sore and wobbly!

Here are all the pretty colours:20190615_183050-picsay.jpg

 

Once I actually start making the collages I'll bore you all to tears with them for weeks I am sure, so enjoy the calm  before the storm Smiley Very Happy

 

Night night all

Sarah x

Member

Re: February starters 2019 - yes, we rule!

Hi debi2,

i personally always had pain during chemo where my lump once was.....I did mention this to my onco who said this was quite normal....

im a headachy sort of person anyway, so theses always got worse during chemo......I know it picks on your weaknesses.....

xxxxxxxx

Member

Re: February starters 2019 - yes, we rule!

Hi 

 

Popping over from April starters.  Just wondered if anyone as had breast pain where lump is while on chemo?  Also had pain at back of head and neck and wondered if it is another side effect.

 

Thanks 

Debi

 

 

Member

Re: February starters 2019 - yes, we rule!

Hello Lizandsarah

My sense of taste got a good bashing on Docetaxel ( Taxoterre). I have had 2 doses of it, one more to go.

I would say that it took 2 weeks after each dose for my taste buds to recover.

Egg omelette tasted like cardboard ( couldn’t finish it), I could distinguish sweet, salty and spicy.

Things I enjoyed eating: watermelon, mangoes, raspberries, honey, raspberry yogurt, dark chocolate, spicy lentil soup ( any veggie soup really as it was soothing even if I couldn’t get all the flavours) horseradish and mustard.

Ginger biscuits. Olives, tomatoes.

Coffee was horrible. Fresh orange juice stung like crazy. Tropical fruit juice from a bottle was much nicer.

Porridge with banana and soya milk.

My weight has stayed steady.

 I have been tongue scrapping and swishing sesame oil in my mouth daily every morning. Soothing and said to remove toxins.

Hope this helps.

Edinbird, hope you feel better soon.

SusieB, no drain, how did they avoid it ?

Netflix recommendation : Line of Duty , I am on season 1 episode 2 so lots to watch . 

Got all my ironing done today.

Hugs to all,

Rosina

PS love the photo Marlyn, your regrowth looks good and strong.

 

Member

Re: February starters 2019 - yes, we rule!

Hi lizandsarah

 

I think some of us have been affected more by this than others. Each T cycle I had problems but they resolved during the cycle to come back next time. First T water felt slimy and everything tasted too sweet. This was from a couple of days after the treatment. Took around 10 days to resolve. I didn’t get the slimy feeling again but had the sweet taste for the next two. I had my last T on 3rd and I had a couple of days where nothing tasted good. But I found after that if I persevered with a couple of mouthfuls it was ok just the initial taste was weird. My taste is almost back to normal now. I have had an ongoing problem with chilli since I started on FEC and I’m wary of trying anything hot just yet!

 

A lot of others on this thread seem to have had taste issues for longer and a lot worse so I’m sure they’ll let you know how they’ve gotten on.

 

I haven’t lost any weight just gained throughout... I hope it passes soon xx

Member

Re: February starters 2019 - yes, we rule!

Hi lizandsarah,

i was fec only and lost all sense of taste.....like you everything ( except salty crisps) tasted like wet slimey kak.....I'm now 8 weeks post last chemo and the mouth is still odd but way better....sorry to read your having real issues....I know my lovey sisters will be along soon to join in as most of them have also had the T .....

How have you been otherwise? Xxxx

Member

Re: February starters 2019 - yes, we rule!

Afternoon ladies

 

I hope you don't mind me popping over from the April thread, but I thought you might be able to give me a bit of guidance as i am guessing most of you have now finished FEC--T.

 

I've lost all sense of taste on Docetaxol and am now losing weight, everything tastes like cardboard! Got two more cycles to go.

 

How long did it take for sense of taste to return to normal? 

Thanks

Member

Re: February starters 2019 - yes, we rule!

Hi Susie

 

Hope you’re starting to feel more with it.

 

I didn’t have any blue dye to drink... it was clear, it was the contrast for my CT scan. The blue dye you had was as you say to do with lymph nodes. I’ll have to have that so they can isolate the four they are going to take.

 

For the CT scan they give you dye to drink to highlight the organs and then I did have to have some by cannula to highlight the blood vessels. Spoke too soon yesterday!

 

Just sat around today. No drive to do anything. Even eating at regular intervals to take my antibiotics is annoying. Might try and sleep again but I’m not that tired, just floating around in the middle really.

Member

Re: February starters 2019 - yes, we rule!

Oooops, didn't mention the dye was injected into the nipple area, hence the bruising colour.

Still having side effects from anaesthetic, so having difficulty in concentrating for very long and engaging brain. Will be popping in for short spells over the weekend me thinks xxxx