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February 2019 chemo starters

Member

Re: February starters 2019 - yes, we rule!

Morning all

 

I had another half decent kip!  Lovely.  Although I did have to take a paracetamol to get to sleep in the first place as I had the proper full on T leg pains.

 

Daisydi, I must admit I can never remember the stage and grade stuff.  Maybe my mind is blanking it.  Had to go back to my consultant letter to get the details:

 

31mm grade 3 invasive ductal cancer with extensive lymphovascular invasion.  Strongly ER positive and HER2 negative.  Oncotype DX score 34.

 

I can't find anything that mentions the stage.

 

And yes, right boob.

 

My surgeon said that had the lump been bigger or my actual boobs smaller, I would have had the chemo up front to shrink it before surgery.  But because my boobs are/were a good DD/E cup, she had room to manoeuvre.

 

So instead I went op first, then chemo and radio

Member

Re: February starters 2019 - yes, we rule!

Morning Daisydi, I am up early.

Going for a walk with H1.

Re. my cancer I am T2N1M0.

This translates as stage 2 tumour, 1 Node positive ( don’t know why it’s a 1 ,as 2 out of 13 removed nodes were positive but 1 was a sentinel node) and 0 metastasis.

 I am ER/PR positive and HER2 negative.

My treatment was surgery first, chemotherapy second (more than half way through now 🤪) to be followed by radiotherapy and Tamoxifen .

Yes, it was the right boob.

Have a great day,

Rosina

PS I was advised to go ahead with the chemotherapy as it gives me 7.3% improved survival at 10 years .

Off to enjoy the present moment.

I did take 2 ibuprofen last night in order to sleep without lower back pain. Slept well ⭐️

Member

Re: February starters 2019 - yes, we rule!

Hi Rosina, I am doing the best I can to get a job and move leaving behind all this, but it is not easy.

We were both caught in a situation of ending degrees, starting jobs, recuperate financially.

Then, suddenly, it was my kidney followed by V's cancer.

And no plan B or savings to cope.

She has to finish her treatment, I have to keep caring for her, injections, dressings, cooking, baking, cleaning, cope with the bills, uni, debts, etc., etc., and find a job, and hopefully move away from this university.

She cannot think about all this, she is frail, Chemo brain hit, she just needs to rest.

I have to be the one opening the doors for a different life.

I just do not know how, but I keep going, waiting for a miracle after so much rubbish.

S#####t happens!

Member

Re: February starters 2019 - yes, we rule!

Thanks for info re injections.  Havent decided yet when to do.  Will make my mind up tomorrow.  So Rosina and Implausible we all had right boob problems.  What grade were your cancers.  Mine was grade 2 and originally staged at 2 but maybe now changed but last time they said it was 2b.  I did ask my oncologist last week why some people had chemo first and he said it depended on grading and HER status.  I think we 3 are all ER+ and HER-  He also said I would be getting Anastrazole and radiotherapy about 3 weeks after chemo finishes so if everything goes to plan I will hopefully be finished treatment by August.  What a lovely thought.  Then I will have to decide if I want more surgery to match up breasts.  Not sure about that one yet.  Anyway enough of me wittering on, must be the steroids.  Night night. Ive got a really funny sensation on my nose feels like something crawling on it.  Very strange.  Must be the T

Member

Re: February starters 2019 - yes, we rule!

Hi Sandraindurham,

 I know that ‘patience is a virtue ‘ but you guys are on the receiving end of continuous excrement to put it politely.

At what point do you say ‘enough ‘ ?

 I had 5 and 1/2 years of teaching at a place that was emotionally , mentally and physically exhausting. When it got to the point of me waking up from nightmares in tears I knew that I had to move on. 

Stupid me I wouldn’t leave until I had another job to go to, which I got .

Within 2 months at this new post the same people who hired me then decided that I was meeting their expected standards.

 I spent 5 months jumping through hoops, being observed on almost a weekly basis, working from 6 am till 12 pm, presenting lesson plans 48 hours in advance of being observed getting no feedback on my planning only to then be shredded to bits after having been observed by 2 ‘senior leaders ‘.

My confidence was eroded, I doubted everything I was doing, then ‘capability ‘ was on the cards ( for teachers this is  where they have to prove that they are capable of doing the job they were hired to do) my union advised me to not enter into the  ‘capability ‘ process.

 It was the best thing I did !!!

I resigned, left, got my life back.

This ‘I won’t give up’ mentality is not always a great idea

I did supply work for 4 months and then landed my current post where I am looked after and appreciated.

I understand that V needs to continue her treatment but does she need to continue with her doctorate? Can’t she   stop? Put it on hold ?

 I don’t know how you are keeping all these plates spinning !!!

Life is too short to not enjoy it.

V is young.

You both need a break.

Allow yourselves a ‘time-out’ from trying to jump through hoops for others.

Hugs,

Rosina

Member

Re: February starters 2019 - yes, we rule!


@Implausible wrote:

But there must be something.  If she was a full time student on her own but needed full time care they wouldn't just leave her there to starve.  And similarly if there is a carer (you) they have to provide cover so you can leave the house occasionally plus respite.

 

This is completely untenable.


Reality is what it is. I can be a carer (I have a card because I have been V's carer due to her health issues) but no respite.

If a person is on her own in some councils welfare comes a few days, there are nurses, etc., but, in truth, she is my baby, and she would not feel comfortable with a stranger.

And, then, there is the crazy dog, the most unbelievable Chihuahua that does not allow anyone nearby her Mum Smiley Happy

We just have to be patient, things will improve.

I think the worst part came from the university. They have hardship funds and when Veronica applied, when she was diagnosed and had the mastectomy, they told her that she should have though about it before applying for the university (uni starts in October, Veronica was diagnosed in the end of November).

Member

Re: February starters 2019 - yes, we rule!

I'm still doing the arm exercises too.  Although only once or twice a day rather than the 3 times a day I did before.

Member

Re: February starters 2019 - yes, we rule!

Hi Ladies 

Its strange isn't the difference in advice we're given , i was actually given a front fastening zip up bar and yes had to wear it 24 /7 for a month until my drains were taken out. I eventually brought pull on bras from asda as i was told i couldn't wear underwire bras with an implant in but i actually had a couple of sports bras that fasten at the back, can't wait for the next surgery to replace my implant and uplift my other one xx plus i am also being told to keep exercising my arm to prevent issues later its still numb underneath xx

Member

Re: February starters 2019 - yes, we rule!

But there must be something.  If she was a full time student on her own but needed full time care they wouldn't just leave her there to starve.  And similarly if there is a carer (you) they have to provide cover so you can leave the house occasionally plus respite.

 

This is completely untenable.

Member

Re: February starters 2019 - yes, we rule!


@Implausible wrote:

 

If V is now needing pretty much full time care is there any assistance you can get from the NHS??


Oh, we are both full time students, which means that we are not entitled to anything at all!

Member

Re: February starters 2019 - yes, we rule!


@Implausible wrote:

Thanks for the nice words but I can assure you I wasn't fishing for compliments!!!  I was just explaining why I've decided to ditch the cold cap and go for the full shave....

 

I kind of wish I hadn't bothered cold capping at all but it was worth a try I guess?

 

More importantly..... a chemical burn??????  How?????

 

If V is now needing pretty much full time care is there any assistance you can get from the NHS??


Honey, with me you can be sure of one thing: I never, ever, say something I do not think or feel!

It comes with all age, I am entitled to be true and raw Robot tongue

V calls me Mumzilla... just to give you an idea of my 'lovely' personality Smiley Happy))))))))))))

Well, it seems that in some cases chemo can give this, the toxicity is not well metabolised by the body and these lovely things happen. Sometimes people get ulcers, other have this.

The blurred vision is another situation where the toxicity is too much.

Well, I have been stocking everything.

Let me see: we have two types of Difflam, the one that is a spray is excellent for this, Corsodyl, Listerine Nightly Reset (no alcohol), betodine for dry mouth Smiley Happy

Member

Re: February starters 2019 - yes, we rule!

Hi Implausible, the hair shave was absolutely sole destroying for me but I was brave qnd let my niece shave it the weekend before my second fec and I also let my hubby video it being done for when and if i ever actually want to watch it but still to this day i have difficulty letting anyone see me without my wig and it might only be hair but unfortunately thats not how I see it, I was happier losing my booby. Well done you anyway xxx 

Member

Re: February starters 2019 - yes, we rule!

Trixieeeee my friend, how are you?

Well, I look like #### to be honest Robot LOL

Trying to put all pieces together but failing completely!

I simply don't know what to do, she cannot be left alone, I have to go chase dinosaurs for dinner.... well, it is all a mess.

I have bills to pay, university work not done at all, no income and all the time I am seeing her in pain, really scared to the point that she has to hold my hand to sleep.

I look like those people trying to balance a lot of plates spinning in the air, running around..... they will start to fall eventually!

Well, let us see what will be the result from her oncologist appointment in two weeks, I am not convinced about chemo taking into account the impact in V's case.

Oh, and I keep applying and being rejected Smiley Happy)))))))))

I am such a people's person Woman Tongue

Member

Re: February starters 2019 - yes, we rule!

Thanks for the nice words but I can assure you I wasn't fishing for compliments!!!  I was just explaining why I've decided to ditch the cold cap and go for the full shave....

 

I kind of wish I hadn't bothered cold capping at all but it was worth a try I guess?

 

More importantly..... a chemical burn??????  How?????

 

If V is now needing pretty much full time care is there any assistance you can get from the NHS??

Member

Re: February starters 2019 - yes, we rule!

Oh Sandra, so sorry to hear about Veronica, pass on a big hug for me please, its absolutely barry rotten this, have they been giving her the corsodyl mouthwash?? I get it after each chemo session xx What are they doing about Veronica's chemo ?

How are you feeling as i feel for you as well its not easier being the one giving the support especially when your not well yourself. 

I've been for a heart scan today so fingers crossed chemo cam go ahead on Monday but I'm still also suffering from breathlessness xx

Member

Re: February starters 2019 - yes, we rule!

Just back from the hospital with my daughter, another sleepless night, she has a chemical burn in the back of her throat, increased heart beating, blurred vision, terrible headaches, and she hardly walks.

I have to bring her everything and cannot leave the house, what a mess.

In the end, neutrophils great, ECG normal, liver, kidney functions, all normal, it is just our 'good friend' FEC the barbarian striking all the weak points!

What a #######

Member

Re: February starters 2019 - yes, we rule!

The bands suit you Edinbird.  They look totally ridiculous on me. Think I have the wrong shaped head for them.

Member

Re: February starters 2019 - yes, we rule!

My Implausible/Sarah dear friend: could you please take a closer look?

You are so, so beautiful! Yes, the hair is different, but would you look at a Monet and say that the frame is what makes it beautiful?

Look at your eyes: they can catch all the luminosity in the world!

Look, Veronica shaved her head completely and she went through the same process, and I shaved mine because I really did not care, it will grow back, even more beautiful and strong, and, in a way, it will be a symbol of what you have won!

Every single bit of hair that came down is a symbol of a really nasty war, but you are winning, and those scars will disappear!

Look again in the mirror: what you are seeing is the naked face of a warrior that will not go down.

OK?

Member

Re: February starters 2019 - yes, we rule!

Oh don’t worry about the surgery talk I’m not worried about the anaesthetic I’m just frustrated by the unknown. My boss came round earlier and I was trying to explain what’s happening next and when and I am a little more informed but a lot of it is totally made up! Trying to work out how I might feel by then too... well who knows?! Just day by day which doesn’t help planning. Will be interesting when I get my occ health assessment...

 

I had all my headbands turn up today. It’s very odd for me as I never have my hair back and I felt very strange with it on at first. But I’ve worn it all day and everyone I’ve shown thinks it looks good. Here’s number one... have various designs in different colours, six so almost one for every day of the week! It’s a Hygge Band and there’s 5 for the price of 1 at the moment (also went for a lucky dip one at a really cheap price in case you think I can’t count!)

 

 

image.jpg

 

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Re: February starters 2019 - yes, we rule!

Implausible, I think you rock the look. I. A. Understand no cold caping and shaving your hair. I’m feeling pink when we can colour our hair again. The kids are horrified think it makes me want to do it more. I still have quite a bit, with very large roots showing now. I keep looking at the wig I’ve paid lots for, hoping that I never have to wear it, but double edge sword as didn’t have the money to buy it and never wear it. 

Rosina I think I’m with Sarah and would have called an Uber today, I popped into Asda on the way home from hospital and felt like an old woman walking around in a daze. 

Love to you all ladies, it’s tough but we are doing this 💪

 

 

 

 

Member

Re: February starters 2019 - yes, we rule!

Implausible, totally agree with you on shaving your head, hubby shaved mine off a few days after first cycle...oh and btw.....I still think you look pretty awesome with or without hair....it will be growing back sooner than we imagine.....xxxx

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Re: February starters 2019 - yes, we rule!

Think I would have to have gone over the barrier Rosina but then would I have been run over by a train or something.  Sarah you are very brave to shave your head.  You still have eyebrows.  Is it too painful as it is.  Seems a shame to lose what you have left but I understand why you would want to.  I have been so lucky with my hair but I think its to do with the fact that my hair hasnt seen any bleach or colour for a good few years now so it was prob in quite good condition.  I used to get highlights but got so fed up of them really drying my hair out that I just wait for summer and get the natural ones.  Saying that we are not out of the woods yet but I am quietly confident that it cant all fall out now.  Have lost most of my eyebrows though and my lashes are quite thinned out but I am not so concerned about them.  My cold cap yesterday was excruciating.  Brought tears to my eyes but I cant stop now.  I have also been using a botanical treatment which is supposed to protect the hair and follicles from the freeze so I dont know what has worked but I am not changing anything for the next two.  I have done really well today, been shopping, done loads of washing up, been to see my mum, done loads of washing, taken the dogs out, fed all the plants and now I have my feet up.  My sister broke her ankle last year and bough and old mobility scooter which is now in my garage ready for me to drag the dogs around if I cant manage to walk.  Seems weird to think that side effects kick in some much later.  I am feeling well, have no nausea and am taking no tablets.  Halved the steroid dose for today so will carry on with another half dose tomorrow and then see what happens.  

When my surgeon found one positive node he was happy to just do chemo and no more surgery, the American way but the MDT insisted that I had full node clearance.  My main concern was lymphodema as I am right handed but so far so good just paranoid now about getting cut or bitten.  Does anyone know of a good skin kind insect repellant.  Last year I really reacted badly to every bite and swelled up in large areas and I dont want that again expecially with no lymph nodes on the right.  Its been such a beautiful day here and I am now tempted to cut the grass but think that may be pushing it ...

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Re: February starters 2019 - yes, we rule!

Hi Susie B,

I decided to go right and take the long and scenic route.

Ended clocking up 6,000 steps.

Currently flopped on my bed, experiencing  lower back pain with a vengeance. 

Wondering weather it is due to :

1) PMT - period due this Friday and so far it hasn’t given up. When I was told it would stop I thought it would immediately!

2) T drug 

3) White blood cell injection-.last one was today and I didn’t do it very well as I wasn’t concentrating properly so lost half of it ( does rubbing lost drops on the skin work ? ) .

 I am going to pick (1) from the above.

Rosina

PS I also managed to burn the pine nuts ( toast not bbq them says my fool proof recipe).

Yes definitely PMT

In my next life I want to be a plant .30DD34C7-8119-48DA-857F-FFABCD319D35.jpegApple Blossom sounds good to me.

 

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Re: February starters 2019 - yes, we rule!

That was Rosina not me, I haven't got off the sofa today, let alone gone out for a walk! Smiley Very Happy

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Re: February starters 2019 - yes, we rule!

Hi everyone 

Sorry Edinbird blame me for the surgery stories. I had a call this morning asking if I could see surgeon tomorrow - they had a spare appt so that meant I would definitely get that out of the way before my holiday. I know I'm having a lumpectomy but, like you the nodes are an absolute mistery.  I had a few questions prepared, but needed a heads up on what else I could or should ask. Hope your throat gets better soon.

 

Leading on thank you so much to all of you for getting back to me. I am terrified of the anaesthetic so will definitely make sure they know about that one. As for bras I've already bought a couple of post op ones from Asda. Reasonably priced and soft and comfortable. Will ask surgeon if I'll need any others. There were a few questions I hadn't thought of and a couple I don't know if I'll want to ask at all. I don't know what I would have done with your support.

  

Sonia28 I hope they get you sorted. PICC line problems on top of the thrush is the last thing you need. To date Klingon has been fine but I'm a bit concerned bc nurse is happy to go 11 days without being cleaned through etc. I fully expected to have PICC care on the Tuesdays before and after my little jaunt to France. Hope they know best.

 

Implausible so what did you do after being faced with your little conundrum🤔? I don't think I would have braved going over the barrier, much as I would have liked to.    

 

All the Best to everyone I haven't  mentioned. Thinking of you all xxxxxx 

 

 

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Re: February starters 2019 - yes, we rule!

Ok anyone with a weak stomach look away now, as these photos are NOT pretty!!!
 
I haven't showed anyone outside of my immediate family just how god awful I look now, but if I can't be honest with you ladies, then what can I do?
 
OK deep breath....
 
So.....my hair is now so downright horrid that the sight of it depresses the living daylights out of me.

 

 

Ok this post is all messed up.  Ignore this photo here and pretend it is right at the bottom of the page where it is supposed to be.  It will all make sense laterSmiley Happy
 

20190202_141909-ptticsay.jpg

 

 (See pics below)
 
So I have made the decision today to just shave the whole thing off.  Bald has to look better than that!
 
And I'm going to ditch the cold cap for the last 2 sessions.  Not like it did much for me anyway!
 
I did find it really uncomfortable last time and it will be a relief not to have to bother.
 
Other half is going to shave me at the weekend.  He is used to it as he does his every morning Smiley Happy  we will be bald twins!
 
Wish me luck Smiley Happy
 
Sarah - who genuinely can't believe that chemo has gone from that last pic at the bottom to the new ones in just 3 months.  That photo (bathroom selfie showing off a new dye job Smiley Happy ) was taken on 2nd Feb , 10 days after my lumpectomy, and 2 weeks before my first round of FEC.
 
You wouldn't think it was the same person would you?
 20190501_102338-picsay.jpgAnd my face isn't much better but to be fair I am 5 minutes out of A and E Smiley Very Happy

 

20190501_102506-picsay.jpg

 

20190501_102354-picsay.jpg

 

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Re: February starters 2019 - yes, we rule!

Proper catch up time

 

First of all, huge congrats to Daisy and Ocean for ticking another one off the list.  Woohoo!!!

 

Enjoy those first few T days which are definitely nicer than the early FEC days, and I hope that when it does kick in for you later on it is mild and forgiving x

 

Ocean as ever your photos are spectacular.  Some of those wouldn't look out of place in an exhibition, really!

 

Rosina your description of the crowded yoga yurt with everyone limbs a-tangled and stuff catching fire in the corner, really did make me laugh!  I actually think the delay in your treatment worked in your favour, as day 3 post T is more manageable than day 10, from what I have read.  I think you might have struggled!  Although that said I couldn't do it at day 3 either Smiley Very Happy

 

Marlyn I am keeping low but not moving very fast today Smiley Happy

 

Oooh Susie I didn't realise your holiday was so soon!  Brilliant!

 

I have sadly decided not to go ahead with my long weekend in Edinburgh in a week and a bit.  That is my "good weekend" and I am sure by then I will be feeling ticketyboo.  But so soon after my little hospital trauma (my other half laughed yesterday when we got home and I called it that, as he is used to me not being phased by anything, but it really WAS traumatic!), I don't think I would feel comfortable too far from home.  Pity though as I was looking forward to a coffee with our lovely Edinbird!

 

Nettie how are you feeling today?  Are those glands behaving?
That train ticket smile fooled me for a second Smiley Very Happy
And today I have made it up to 3 on your scale Smiley Happy

 

And Seaside?  Hope you are still on the mend and enjoying your boxsets Smiley Happy  I am finally watching Umbrella Academy and enjoying it a lot more than I expected to.  I read the comic when it came out about 10 years ago and wasn't particularly impressed.  The TV adaption seems to have mainly taken the better bits.  So that's good.

 

For all of you worrying about a gen anaesthetic for the first time, that is totally normal.  I was "lucky" that I had had a hysterectomy 2 years ago, so it wasn't my first rodeo.  I actually quite enjoy a GA now as that night you have the deepest loveliest sleep!! Smiley Happy  but before my first one I was TERRIFIED.  I even wrote the kids letters to open in case I didn't wake up!!!  Luckily they didn't know about them or they would have been worried.  I was a twit.  It was a breeze.

 

Injection wise, my nurse tells me to do mine at midday, but I am not sure why.  If you haven't been told a specific time I guess you do what suits you?

 

Oh Sonia you are in the wars Smiley Sad  hopefully patched up and home from hospital now and feeling a little better?

 

Rosina...what would I do with the closed footpath?  Today, call an uberSmiley Very Happy

 

Big love to everyone

 

Sarah x

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Re: February starters 2019 - yes, we rule!

I have to have my injections after 1pm as that’s when my treatment finished, but anytime after that, just the same time each time. I do mine about 8:30pm.

 

Im to home now, blood levels were raised so weren’t sure to begin with, but happy to let me go home, and await swab results from PICC line. 

Member

Re: February starters 2019 - yes, we rule!

Hi daisydi 

I always had my fillywotsit injection at around 5:00 pm. Mainly because my hubby would definitely be home by then to do the deed. It helps if you take the syringe out of the fridge half an hour before injecting. Thanks for the information regarding surgery. My fear like yours is having the anaesthetic. I'm terrified😨😭.     

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Re: February starters 2019 - yes, we rule!

 

This sign was up on my return from Lidle ( had to go for a bag of spinach).

 It hadn’t been there on my walk in , I had used the foot path 1/2 hour ago.

I469CAA57-5554-47CD-8372-1308024142B2.jpegWhat would you do ?

Initially I was shocked ( who has done this to me ??? why ???) then I was amused 🤪 adventure !

Do I go left or do I go right? How do I get home? 

Left means less walking but more traffic and not scenic.

Right means practically walking into town but much prettier and less traffic.

Could I ignore the sign and just clamber over ?

What would you do ?

Member

Re: February starters 2019 - yes, we rule!

Daisydi 

I do my injections in the morning.

Just after breakfast.

Nobody indicated a specific time. 

I am a morning person so I just get as much done am , so that I can forget about it afterwards. 

Rosina

Member

Re: February starters 2019 - yes, we rule!

Hi SusieB

all will be well tomorrow. 

With my lumpectomy they also did a sentinel node biopsy.

The sentinel nodes are the ‘guardian nodes’ in the breast and the gateway into the rest of the lymph system.

My lump was 43 mm ( and they got good clearance) one sentinel node was positive .

I was a day patient for this op. In the early morning and out by the afternoon . No worries, no pain, lady anaesthetist ( who I liked - she asked me what my favourite tipple was on a Friday evening: red wine , last thing I remember,  then I was back on the ward annoyed that people were talking over my head and I just wanted to keep sleeping 🤪 it was the nurses making sure I got fed and watered 🤗)

As one sentinel node was positive I was advised to have right axillary node clearance- which I did .

10 nodes were removed and 1 was found positive.

 I again came home the same day with a drain in which came out 3 days later.

I slept in a sports bra from the time I left the hospital on this second op. Till when the drain came out . It was a front zipping sports bra from M&S , I then switched to a M&S soft bra ( no clippers, poppers, zips) more like a crop top but for adult women  .

 I did the arm exercises I was sent home with RELIGIOUSLY x3 a day .

Starting with the shoulder shrugs even when the drain was in.

They kept on re. Me stocking up on painkillers but I only took ibuprofen at bedtime. It was more discomfort than serious pain ( then again I compare everything to having had staples in my lower abdomen after a c section- and nothing has ever been as bad as that 🤪).

Also walk as soon as you are able, don’t stay lying in bed. You want everything to circulate.

Re. Strong painkillers the only time I took cocodemol ( codeine) I passed out in my bathroom- fortunately I could tell I was feeling funny and called out to H1. I will not take them.

Did I ask questions?

The one that I have written before me says :

’what is my prognosis?’

I wanted them to tell me and we went through PREDICT together with my surgeon.

Hugs,

Rosina

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Re: February starters 2019 - yes, we rule!

Funny the different information we get,

MJB, I was told to have front fastening bras, I got the M&S ones. I did have mastectomy  a reconstruction so not sure if you needed it to keep every thing in place, also had to wear 24hrs. But when I had mastectomy I was told anything without an underwire. When I went to get my  prosthetic the other week she told me Asda do good post surgery bras ect on line. I also ended up investing in a expander to make my bras  breathable, not sure if it was swelling or weight gain as I’ve definitely had both. I did invest in some bralettes, for after a feed weeks after surgery when I felt I couldn’t breath in the bra at night. They were just difficult to get in and out on my own 

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Re: February starters 2019 - yes, we rule!

Hi Susie

 

I am rubbish at asking questions of the docs, so I probably didn't ask much!

 

But in terms of my surgery, I had a lumpectomy and a couple of sentinel nodes taken out at the same time for testing

 

I was in for 2 nights, I think?  Gosh I can barely remember.  I think that was because I was late into theatre (7pm ish).  If I had been in earlier I would have been home the next day.

 

I had a general anaesthetic which went super smoothly, and I felt fine after coming round, no nausea, and the pain there was was quickly sorted with one dose of oramorph.  Once that wore off I was onto just paracetamol and ibuprofen.  They offered me codeine but I didn't need it and it always gives me bad constipation so I declined.

 

My post surgery right boob is quite lovelySmiley Happy  pert and firm and in considerably better shape than it was before.  My surgeon did a great job!  There are scars but that's life....  and she was able to save the nipple although it is a bit flat now.  

 

They ended up taking out 2 lymph nodes, one of which came back positive.  Which was disappointing as they had all looked healthy on the scans.  I have opted not to go back for a full clearance though as my surgeon and onco have showed me stats that basically say that chemo and radio should zap what is left, and the recurrence risk is not improved in my particular case by also clearing the rest of the nodes out, so why bother....

(I will always worry about that decision coming back to bite me!!)

 

Hmmm..... what else to tell you.  Recovery was pretty smooth.   I was fully recovered in about 3 weeks.  Just in time to start chemo.

 

Oh and bras.... I was given 2 front fastening post surgery bras and I had to wear them all the time, day and night.  They are super comfy, I am still wearing them (although not overnight any more).  I haven't worn any of my old bras since surgery.  My boobs are so lopsided still that I don't think I could find a "normal" bra to fit.

 

Once I have been "evened up" in August and am all healed, I shall go bra shopping Smiley Happy

 

 

 

MBJ
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Re: February starters 2019 - yes, we rule!

Hi Girls

Just to let you know I was advised by my BC nurse not to get a front fastening sports bra as you can't adjust them. In fact she reiterated this on Monday in the moving forward course and apparently the worse ones are the zip type. I bought two high impact ones from Marks I was measured but my God were they too tight after surgery. Not the first few days but by about day four I was in real discomfort. So my friend bought me a larger under bust size from 34 D I went to a 36 B as I just could not stand the tightness. In fact these were still tight so I ended up cutting two old bra fasteners off and sewing them on the new ones to give me an extra inch. I did have a mastectomy with reconstruction mind you. So if you are having a lumpectomy you will probably not get the same issues as I had anyway. Of course as we know advice is different everywhere and front fastening might be the preferred style in your unit. But just to prepare you they will be tight and you have to wear it 24hours a day. 

 

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Re: February starters 2019 - yes, we rule!

Just a quick update, went to get PICC flushed today, they didn’t like the look of me or my PICC line site, so have swabbed cultures and taken bloods. She said the hydrocortisone wouldn’t work as the rash is a reaction from  the chemo so have given me antihistamine. Presently taken myself off to get my drugs and. Lunch as not allowed to leave hospital until results are in which could take up to 2hours. ( I just want my bed, feeling very sorry for myself so little sleep last few nights not helping the ) 

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Re: February starters 2019 - yes, we rule!

First thing this morning I was thinking yay - last chemo is next month! Now I’m reading all the surgery stories and feeling I have so far to go... wish I knew for sure what surgery I need, I know what the surgeon wants but that depends on the effectiveness of the chemo. Still 6 weeks til I’ll know.

 

I know it’s in two lymph nodes but I don’t really understand what will happen in terms of removal, I guess I want as little as possible but I just don’t know and I haven’t asked as it’s not relevant yet. The not knowing is the worst bit 😕

 

Need to get dressed as I’m still sat in my pjs and people are due! My throat is hurting more, need to keep an eye on it but it’s kinda achy gland hard to swallow discomfort rather than anything else so hoping it’s just more aches coming on

 

Re the injections I do mine in the evening so if it’s sore I can just go to bed but so long as you are consistent I don’t know that it matters?

MBJ
Member

Re: February starters 2019 - yes, we rule!

Good morning Implausible

Oh it's so nice to read you are feeling ok. I love your assistant she looks very interested in her work 😀. 

Keep well, rest and play a bit. Hope your appetite is ok. 

Member

Re: February starters 2019 - yes, we rule!

Hi all, just a quick update about me, me, me Smiley Happy

 

Will come back later and check in with you all properly but just confirming I am ok, slept like a log last night (8.5 hours!!! Without even getting up for a wee!!! Unheard of!), and am feeling reasonable today.   Weak and a little achey but nothing major.

 

Took me a couple of hours after getting up to brave taking my temp but delighted to check in at a reasonable 37.0

 

Am back at work, but in case you worry about me exerting myself, work so far has consisted of one phone call and a few emails fielded on my phone while laying on the sofa under a blanket.

 

My assistant is helping:

20190501_112823-picsay.jpg

 

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Re: February starters 2019 - yes, we rule!

Just  quick question I have to start the injections tomorrow. Only one a day for 3 days.  When is best time to do.  It is Filgistram or something?

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Re: February starters 2019 - yes, we rule!

yes forgot about the bras sports bras and front fastening things for ease of examinations. Try to do exercises before you have surgery so you know what it feels like. Also bought a big v cushion to sleep with and had a lovely heart shaped cushion for under my arm.  I had to stay in overnight on all occasions as I live alone but that is not the norm you will be sent home on same day all being well

Member

Re: February starters 2019 - yes, we rule!

Susie, I had a lumpectomy, the surgeon said I was lucky as the lump was on the side, so I only have a small dent....I was a day case, went in 7.20am, up to theatre 11am, drinking coffee and eating toast by 3pm, home having me dinner by 5pm.

 

stock up on soft bras ( good old marks) and absolutely make sure you do the exercises they give you....xxxx

Member

Re: February starters 2019 - yes, we rule!

Morning lovely ladies

Susie good luck for tomorrow, i had a skin sparing mastectomy nipple taken to due to the size of my tumour and the size of my DCIS, I just wanted it out then they found it in a node so a month later done full node clearance and luckily only found the barry in one,, just like daisydi i was terrified of the thought of the anaesthetic but once they were aware they were fantastic, I really can't remember the questions i asked if any, maybe, about showering, exercise  the speed, the numbness in arm and boob, the drains  driving xxx not sure what your question was now xx

Member

Re: February starters 2019 - yes, we rule!

Susie my first surgery was a batwing mammoplasty with sentinel node removal.  It was a big op but I was scared of anaesthetic as I had never had one.  Make sure they know you are worried the anaesthetist was fab when he knew how nervous I was.  Just to warn you none of my nodes looked abnormal on u/s and showed no sign of swelling under my armpit but in the end they removed 24 and 4 were positive.  I had to wear a really tight corset as there was a lot of tissue removed and moved around.  That was the worst bit.  I had a reaction to the waterproof dressing and developed really nasty blisters under it so keep an eye on that.  Should have taken it off sooner.  It really wasnt that painful just managed with over the counter painkillers.  I ended up with 3 surgeries and was very disappointed when I knew they hadnt cleared margins.  They removed my original tumour and found an area of DCIS which caused all the other surgeries.  My tumour was the same size as yours 21mm, not sure how much DCIS there was.  I was adamant I didnt want a mastectomy, an axillary node clearance or a drain.  I didnt have mastectomy although they wanted to do it third time but had everything else.  I just wasnt ready to have the whole lot off after going through 2 surgeries but then the third one cleared the 1mm margin so I was pleased with my decision.  I still have plenty of boob.  Just try to expect the unexpected and not be too disappointed if if doesnt work first time.  Good luck x

 

Also just remembered all the questions I needed answers too I couldnt get before surgery.  The waiting for results is the worst but once you have grading/staging etc. it is easier to manage

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Re: February starters 2019 - yes, we rule!

Hi everyone 

Just had a phone call to say I can have an appointment with my surgeon tomorrow at 9:40. Eeeeekkk! Not much notice. Can I put a shout out to those of you that have had surgery to ask what questions you asked and were there any that with the benefit of hindsight you'd wished you'd asked. I know I'm having a lumpectomy and I know there's some nodal involvement but not how much.Thanking you all in advance. xxxxxx

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Re: February starters 2019 - yes, we rule!

Rosina I made something very similar to this last night.  Yummy!  Got some left for tonight too x

Member

Re: February starters 2019 - yes, we rule!

Seaside Sar, well done for getting dressed. My husband can always judge my level of wellness by the following....

1. Is her sleep hat over eyes?

2. Has she been out of bed?

3. Has she had a shower?

4. Is she dressed?

5. Does she have makeup on?

 

I very rarely reach 5 but if I get to 4 I feel I’m winning. 😘

Member

Re: February starters 2019 - yes, we rule!

Morning Daisydi, yes I am OK now.

Yoga / core routine completed.

Breakfast of toast with orange marmalade and coffee.

Need to go out to buy some spinach for a spinach and chick pea sauté (another one of my fool proof recipes).

I have just listened to this podcast 

Elif Shafak - TOAST podcast 9B7C8BB4-887D-4176-B90B-456A3DB2B76E.jpegGood Housekeeping Vegetarian Cookbook

Sarah hope you had a good night’s sleep.

Nettinoo and Sonia28 hope you are feeling better.

Trixielady have you finished your puzzle?

Seasidesar are you feeling stronger?

Veronica ????

Love to all

Rosina

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Re: February starters 2019 - yes, we rule!

Hi Daisydi, my neck and ear still painful but have started on the antibiotics so hopefully (if it is bacterial) they will help. Xxx

Member

Re: February starters 2019 - yes, we rule!

Morning lovelies,

 

How is everyone doing today?

 

Hope you slept well, Sarah. Must be nice to be back home.

 

Well done, Daisy, powering through. Glad you're OK. Another one ticked off, woohoo!

 

Don't work too hard, Edinbird. Make sure you factor in some rest breaks.

 

Glad you're feeling OK after your first Taxol, Ocean. How many will you have?

 

Rosina, yoga sounds fun, if a bit sweaty! 

 

Not long until your trip now, Susie. How wonderful! Love the name figlets for the little figs 😀

 

Nettie, I'm going to start collecting train tickets 😁

 

Marlyn, Sonia, Trixie, MBJ, Deano, Sandra & V, hope you're all good today.

 

I'm getting dressed today. That's an improvement on yesterday already. Have been binge watching The Marvelous Mrs Maisel. Really enjoyable and takes my mind of the aches and pains.

 

Hugs to you all,

 

Sar xxx