September 2019 Chemo Starters

[Naomi40]

Hi everyone, it feels like ages since I have been on here probably isn’t that long but sometimes days feel like weeks. 

My last chemotherapy was meant to be the 14th January but it ended up being the 31st December. I had to go into hospital on Boxing Day as I had a temperature of 39.1 . My bloods apparently showed my infection markers were quite high and I was given 3 different lots of iv antibiotics and after 7 hours was sent home as my temperature was normal. 5 days later on the 31st my bloods showed my infection markers were still high but because I didn’t have a temperature I was given chemotherapy and I ended up catching the flu which meant I never got the last 2 of my weekly chemotherapy. I’ve now seen my surgeon and I have an appointment with a plastic surgeon for mastectomy/reconstruction using my own tissue. Has anyone else had this procedure. I get so anxious over many things, the aches I feel in my rib cage on one side, the cramp like feelings I get in one of my legs. I just feel so scared about everything 

[bonnieb]

Haven’t been on for a while hope you veryone had a good Christmas and all doing ok . I spent a week in hospital just before Christmas with neutropenic sepsis, came it on the 20th so did get to spend Christmas at home although under the weather . Last chemo session tomorrow, can’t believe how quickly it had come around . If there is one thing I could recommend before starting chemo it would be to have a port catheter fitted for treatment . Had mine fitted just before 4th treatment as veins refused to cooperate any longer . Since having it fitted it has been such s different experience . I wish all of you well with any further chemo you may have to have . Onwards and upwards   Now just the radiotherapy to look forward to 

[Bethybluesky]

Hi Kattz,

When my mouth was full of ulcers on FEC, I  used the Difflam mouthwash that my oncologist prescribed 3 times a day and although it wasn't pleasant, it did clear things up.

I had a choice to make between mastectomy and lumpectomy due to having more than one tumour. I chose a lumpectomy (although this did seem to end up being 80%of my breast anyway!). It meant I retained my nipple and some of my breast tissue. I had a lateral intercostal artery perforator flap reconstruction which left quite a long scar but used tissue from my back to give me a new breast. I am now having radiotherapy which I think is a given with lumpectomy but not always needed with mastectomy. 

Hope this helps you think things through and that you are feeling a little better.

[Naomi40]

Kattz,

Thank you, I will certainly try the bonjela.

Mainly living off crackers and water at the moment because of an upset stomach .

I received my appointment to see my surgeon near the end of January to discuss  lumpectomy ( I have 2 tumours)  vs Mastectomy.

Did anyone else have that decision or did you already know what was happening?

[katttz]

Hi Naomi,

I got this too when I was becoming run down. The mouthwash is horrible but worth persevering with. Maybe water it down a bit?

i also used a non alcohol mint mouthwash which was soothing. You could also suck ice cubes.

Bonjela could numb particularly sore areas. 
Avoid spicy, salty foods. 
I also use a child’s toothbrush because it’s a lot softer .

Hope this helps xxx

[Naomi40]

Any advice would be really appreciated.

My tongue is so sore and red that eating, drinking and brushing teeth is painful because it touches my tongue and it hurts. They gave me a mouthwash but that hurts too. 

I mentioned it to my oncologist and nurse but they didn’t say anything 

[katttz]

Good luck today Naomi 🍀. I hope your temp has settled down and you’re able to go ahead with your next round of chemo xxxx

[Naomi40]

Hi everyone 

I hope you are all doing okay.

 I had to have my picc line removed today as it had moved 8cm out of the vein and was sitting at the top of it but with only 3 treatments left they felt that having a cannula for the remaining would be okay.

Apparently when I went to the hospital because my temperature was 39.1 the crp markers were up indicating an inflammation somewhere in my body but they never told me that at the urgent care centre it was my oncologist who told me that today and I’ve had to have it checked again and will find out the results tomorrow and if I can have chemotherapy tomorrow. I’m just going with the flow of it all.

 I hope everyone has a great New Years Eve x 

[katttz]

[yorkshire_defector]

Naomi
Yes thanks, the chest infection is decidedly better, just left with an annoying cough now, apparently that's the last thing to go. So feeling much better than I was.

Hope meeting with onc today results in better care for you and that your last chemo goes well tomorrow (will be mentally ding-dinging for you, not sure if you get to ring a bell??) and that your kids are suitably grateful for the benefit of a take away.

When do you get the lung scan results?

Katzz
You're ahead of me, I will hopefully have my op probably a bit after you, I have however been taking advantage of sales to get some button ups tops & cardigans as have realised that most of wardrobe requires too much upper body contortion to get into. Bra is next on list but given still need to have discussion with surgeon will hold off on that one.

Today is the end of my post chemo meds so am planning on having a very quiet & pathetic week, and if its not then happy days! It would be lovely to be able to get out on bike as chest infection has prevented that over past few weeks, we'll see.

I speak to a lovely lady through "someone like me" on here and she also suggested the flat friends facebook thing...am in 2 minds but will see (never been a great one for & with social media) and I do think I do want reconstruction.

Have a great New Year all, quiet one for me with pals.

Sam X

[katttz]

Hi, I’m back and I survived Christmas! 

A few ups and downs with you guys I see. ☹️
I’ve managed to avoid hospital but think having my final chemo on 23/12 followed by steroids got me through . 
we had my in-laws up to ale over the kitchen and Boxing Day everyone had the s***s quite bad apart from me and the kids....result!! Although my chemo squits are due to start any day now 🙄. Everyone went home on 27th and I’ve been drained since. Afternoon on the sofa planned. 
Appts from hospital seem to be coming thick and fast. 7 appts in January which includes surgery on 23/1.

Naomi, I also gave a CT booked for a lung nodule. I wasn’t even told about it, I just saw it on the computer with the onco nurse. She said if it was anything to worry about I would have been told however the surgeon is following it up... I haven’t told the family about it though. Don’t think they need to know until after the ct. saves me talking about it to them. 

Good to put a face to you Naomi, thank you for posting your pic ☺️.

As i’m having radiotherapy post surgery I’ll not be having reconstruction During surgery . Can’t remember if I mentioned I’ve joined ‘flat friends’ on Facebook for women living without reconstruction. There’s a public and private group if you want to search for it. Making me think in a whole new way of what is ahead. Good and bad xxx 

Keep fighting ladies, we will soon be looking back at this time and will be amazed and proud at how well we’ve done. 😘

[Naomi40]

Sam

It sounds like you have definitely had a rough time with everything. 

I hope you are feeling better and all the medication the hospital gave you has helped and your temperature is lower. 

I bet you are relieved about chemotherapy being finished, I can’t wait until mine is. Just another thing to check off the list of a long line of treatment plans. I hope everything goes well with the meeting with your surgeon for mid January. Sending you lots of hugs and I hope you have a lovely new year. I’m treating my kids to take away for New Year’s Eve what with having to have chemotherapy that day. 

[yorkshire_defector]

Also had my last chemo today!  It felt good.

Still have to go back to the unit for monthly shot of zolodex (so they can kill my ovaries off! As am oestrogen positive) so they're not totally free of me yet.  Meeting with surgeon mid Jan re surgery.....can't wait (I jest).

Onwards & upwards and looking forward to shrinking body parts.

Sam X

[yorkshire_defector]

Naomi 

Sounds like just what I had but they could tell it was a chest infection.  I do hope your temp stays normal now as mine kept spiking for next few days despite what they gave me in A&E and antibiotics for me to take at home.  I was told not to go back and to expect this but on advice of McMillan (my first line of defence in my cancer support team) ignored this and was told (by a different hospital) that what I'd done was right.

Hope the meds given are working quicker than mine did ( took 48 hrs).

Suspect your infection, like mine, is just adding to the lethargy and will pick up a little when you're over it.  I'm planning on a short (and annoyingly slow) walk tomorrow.

Your timing wasn't as good as mine unfortunately as the 48 hrs kicked in Sunday so felt not too bad Christmas Day so stuffed my big fat face...lovely!

Hope you're already improving.

Sam X

[Naomi40]

Thank you Sam I hope you are doing okay. 

Christmas Day was okay, didn’t feel to great and barely ate anything but soldiered on for the sake of my children. 
Unfortunately just after midnight I awoke and had a temperature of 39.1 so off to the hospital I went, luckily I had no infection was just a result of a reaction to the chemotherapy but they gave me 3 lots of iv antibiotics as well as paracetamol and fluids and kept me there until my temperature was normal but also did a chest x ray. I finally got home around 8am and have spent most of the day sleeping. Have an appointment with my oncologist on the 30th so need to talk to them about the fact I can hardly eat anything and have zero energy.

 I hope you had a great Christmas x 

[yorkshire_defector]

Naomi
Am in a similar predicament in that energy levels are very low...very annoying as want to be doing lots of stuff & be outside getting fresh air, guess I'll consider myself lucky that there's lots of tosh on t'telly to keep my depleted brain occupied.

Given we're both ending chemo treatment the lethargy is to be expected, and am sure once we have our last chemo's we will slowly regain that energy.

Am "tidying" house (boyfriend has done hoovering & washing the little star) in slow stages today, with lots of sitting down between phases. On the plus side will sleep well as santa delivers his gifts tonight eh?

Unlike you however I am still managing to eat (am on an auto setting as it all tastes pants though!). If you're struggling to eat you may want to get some advice as you need some energy to cope with remaining chemo's. Am not 100% convinced but am sure this chemo lark isn't supposed to kill us...just cause significant challenges mmmm..

Also do keep taking temp as my energy levels were even worse as had temp/chest infection so that didn't help. Call your team re rib ache, they should be able to give you some reassurance but I know when I had my taxol everything ached so am not surprised.

How are things with your partner? I do hope that she's being more supportive (and has got you some lovely gifts of course), especially as its Christmas Eve!

Seeing doc and doing bloods later on, will see whether last chemo remains on Friday given am coughing so much I keep pulling stomach muscles....on the plus side I do have some still.

Merry Christmas Eve

Sam X

[Naomi40]

I find myself struggling this week, hardly any energy but I think having zero appetite and not being able to eat because of it doesn’t help. I had to have a ct scan last week because of a nodule found in my lung 4 months ago and I’m anxious about the results especially as for the past few days I’ve been experiencing discomfort in my ribs but am not sure if that’s down to me experiencing joint pain from paclitaxel. 

How is everyone doing with their treatment at the moment.

 I hope everyone is looking forward to Christmas 

[Naomi40]

Me Just before chemotherapy and me with 4 more treatments to go. I feel like that smiley person doesn’t really exist and I’m either snappy or I cry a lot. I’m all organised for Christmas but I don’t feel joyful at all and I just want this year to be over with even though next year won’t actually be any better 

[yorkshire_defector]

Yep, antibiotics by the bucket load, oral and IV.

Have to laugh re recent request though - can I remove my jumper to bring my temp down...so its my jumper that's causing the temp of 38.6...silly me, probably shouldn't have pretended to be a turkey and be in the oven overnight at 180 degrees either eh?

Ever get the feeling you're being fobbed off.  The jumper stays on !!

Sam the defiant X

[berylperil]

Hey Sam, 

Sounds like you are having a rough old time. There are so many rotten bugs around, everyone is hacking away. Have they given you antibiotics? 

Rest up, lots of fluids and keep your chin up.  X

[yorkshire_defector]

Crikey chemo certainly is the gift that just doesn't know when to stop does it.

Think my body has had enough...at docs then in A&E last night with high temp re chest infection (annoying cough for over a week), sent home and back with same issue this morning.

Perhaps if I believe that I'll be here for Christmas it won't happen??  Fingers crossed.

Anyway suspect the chest infection, and whatever else is going on, will delay the last EC, don't mind too much as it would be nice for a change to have some bl00dy energy!!

And I was so looking forward to a day of watching cr4p on TV in new jimjams (doesn't take a lot to bring joy to my life nowadays) while the poor boyfriend was dispatched with body armour to hunt for festive nosh on the mean streets of Surrey....think I got the better end of the deal actually.

I hope everyone is well and I'm the only one testing the NHS this weekend.

Sam X

[katttz]

Ooh mini mad,

I hope my hair comes back thicker and straight! I had very annoying fine wavy/wiry hair. It was an effort to do everyday hence I didn’t bother most days. I remember when I first got my wig and I was getting so many compliments from people in the playground , not in the know, about how lovely my hair was looking, a lovely friend brazenly commented, “shows how **bleep** your hair looked most of the time before with all theses compliments your getting”. 😂😂

I haven’t had surgery yet, booked in for 23/1 for R mastectomy and anc.

I was diagnosed DCIS invasive Her2+. 

Sam, I just never expected so many spots, its like they multiply overnight!

I actually sell Tropic skincare and a customer knocked on my door on Monday to place an order because she hadn’t seen me around. I don’t know her that well and I thought it was a delivery guy. I looked my absolute worst. I was in a grubby dressing gown, a beanie to cover my Kojak head and full on spots and puffy eyes. Her face was a picture 😂😱

Beryl, yay! Congrats on your last chemo, so pleased your bloods have been playing ball and you can now look forward to Christmas. I’m hoping the steroid highs will get me through Christmas. All being well tomorrow with my bloods I should be having my last chemo on Monday. In laws are up for Christmas and will do all the cooking allowing me to ‘relax’. 
Feeling energetic at the mo so managing to get lots of Christmassy stuff done. Mainly hunting round the house for all the presents I’ve bought then hidden😂.

I’ve been on a bit of a wrapathon too whilst drinking Baileys. Bit more shopping and house cleaning to do over the weekend and then tools down on Monday for everyone else to take over! 

Have a lovely Christmas ladies, fingers crossed we all feel good enough to get through it all ok! 😘😘

[berylperil]

Hi ladies!

Kattz, thank you for sharing, we're in this together.  In the spirit of sharing our new (and temporay selves), and so as not to get too dispirited, my  barnet status is I  still have some very sparse strands of  hair on my head . When I say hair, what is there is pale, grey singular hairs which are alarmingly curly. Now, whilst this may sound encouraging,  girls the reality of this look is it's  one of a pubic hair style. So my head remains covered lest I channel the look of an elderly woman's  front bottom! 

I am also the palest of girls on a good day (I am fair and an ash blonde  in my normal life), I am now looking ghost like in the mirror. I was also quite a lazy girl with make up, and now finding it very necessary to put 'a face' on before heading out.   

Think the fact that I am not completely bald is due to my martini cocktail being   a carboplatin and Docetaxel combo (shaken not stirred),  for my triple neg and not the FEC syringes etc. I have also been blessed with  the softest skin of my life and it's clear, 'every cloud' and all that! 

I also want to say that yesterday I hit the blood count highs after my week delay, so my last chemo session is now behind me and it's the morning after! So after feeling low in the preceding days, now feeling quite good. No ceremonial last chemo bell to ring  in the hospital but as it's the season for bells, plenty of chimes about, and I have metaphorically rung the bell anyway! 

So steroid madwoman is still with me  for a day or so, then the inevitable dip, hopefully emerging for a bit of Christmas spirit and eating. I am pleased to report I have lost weight (this was needed as I am a generous woman with a good set of child bearing hips that are nicely covered).  But come Christmas day, I hope to shovel down a generous dollop of Christmas pud with a lashing of brandy butter atop without a guilty glance and knowing it will shoot through thanks to the GCSF injections, ha!! 

Have a good few days girls what ever you are up to.

Beryl x

[yorkshire_defector]

Forgot to mention...tea tree oil really helped fend off the naughty zits for me.

[yorkshire_defector]

Katzz

Love the pictures, I wouldn't even post one of pre chemo....if I was at all photogenic I would have been a supermodel (and not an accountant...).

You are so lucky to have a good shaped head, it helps so much.  

Just a word of warning re spots, my skin is (when I don't have chemo) greasy and the chemo has made skin more "normal" so unlike you I've had the least spots ever on face during the past few months.  However (this is the warning) after cycle 1 of EC (week after) I came out in the most humongous zits ever (as a seasoned acne sporter even I was impressed) which pre-dated high temps and admission to hospital with neutropenic sepsis, am sure however you're monitoring your temp regularly but might be worth a discussion with your support team?

I also got folliclitus, some delightful small whiteheads on head which I think were more due to some scalp conditioner (for cancer patients) that wasn't a good idea.

Great this chemo lark isn't it?

Rest assured without make-up I look a little like Uncle Fester but with make-up (and some false eyelashes) am looking pretty darn good (still).

Sam X

[mini mad]

Keep your chin up Katttz.... just one more to go....

i am post final chemo 3 months now.... strength is slowly returning as is my hair,  which has come back the same colour and still dead straight 👍 oh and its thicker... eyebrows the same and eye lashes the same length but def thicker..

dont know ur past story,  have u had surgery already ?  Oh and i had Triple Negative BC.

[katttz]

Thanks mini mad but feeling quite s**t at this moment but only one more to go 😊🤞

First picture was taken pre diagnosis so spring time, second picture two weeks after first chemo when I shaved my head. Third pic was last month and the fourth with full on spots last week. Hoping they’ll clear off once chemo is out of my system. X

[mini mad]

Looking so good 💖💖

How long from first picture to the last ??

[katttz]

I’ve been taking photos of my ‘journey’. I understand why I’ve been hibernating from life....for now.

[katttz]

Hi Berylperil,

sorry to here you’ve been delayed. I totally get your tears. Any deviation from the timetable feels like an emotional let down however as much as we want this stage of treatment done and dusted we have to be well enough to manage what it throws at us. 
The last thing you need us a hospital admission if it went ahead 😱

My final chemo is booked for

Monday with blood test this Friday . I’m full of cold and have been for over a week, dripping watery snot everywhere, to the absolute disgust of my kids 😂. 
Unless I stick tissues permanently up my nose I can’t get to the drips quick enough 😂😬

Hoping this doesn’t affect Monday’s final treatment 🤞

Has anyone else’s skin gone to complete pot. I sell natural skincare products and my skin has always been ok, as in no spots or particular problems. I am now covered in spots and my eyes are so puffy... I look bloody delightful!!  

[yorkshire_defector]

Naomi
Sorry to hear your partner isn't being as supportive as I would expect but good that things seem to have improved. This is such a testing time in so many ways.
I also live apart from my partner and see him too infrequently (as his work is manic) but luckily have friends who more than fill the gap, I think we unfortunately just have to accept that times will be tough for us but also on our closest relationships and try and steer through the choppy seas as best we can without going overboard.
Also I guess I'm lucky in that I don't currently have enough energy to argue!

Beryl
Such a shame that your chemo has been delayed, I know it must be such a huge disappointment. Darn those white blood cell counts, but better to delay treatment rather than make you feel even more pants than by having chemo whilst your body can't cope eh? I'm not sure (though am less convinced day-by-day recently) that chemo is meant to kill/torture us.
On the plus side you've now got some timelines to operate within, and hopefully plan some fun things round them...I know I will be when I get mine next week.
With the sound of your cheeks am thinking Aunt Sally! I have taken on a cancer chic look of late, looking relatively gaunt with sunken eyes, dark circles and ever diminishing eyebrows and eyelashes. For some reason the boyfriend (not that I care) tells me I look good but the look on friends faces tells me otherwise...I would have fitted on the catwalk well during the heroin chic period (well my face would).

I must say the last few chemo's really do take it out of you don't they? I've been feeling rough all week, not comfortable in skin per se & can't get comfortable no matter sitting/lying/standing. With the residual peripheral neuropathy my feet are better when I stand & walk but have buggar all energy & enthusiasm to do so (what a quandary)..am going to drag my carcass outside today if it kills me.
Taste bloody buds have also deserted me, what do I want to eat? I really don't know but I'll tell you something that I'd rather drink bleach than taste persimmons again...euuggh!
Have also noticed, that despite always having 3 square meals a day (yep am force feeding self) have lost weight, am still a fatty bum-bum but am losing weight too quick and thought with steroids it was supposed to be the other way around?? When started this adventure was 98kgs (start August) am now 80kg with 4kg lost in last couple of wks (on the plus side if i had the enthusiasm to bottle this could make a fortune..the lengths people will go to lose weight & all).

Am hoping this is the end of my pathetic, post chemo time. Am going to cheer myself up by buying some new jimjams (in a smaller size!) as seem to spend most of time in them and suspect with surgery & rads things ain't gonna change in the new year..rock and indeed roll.

Sam X

[Bethybluesky]

Beryl,

Just remember that you are far better having some white cells to protect you- particularly at this time of year. I was rushed into hospital with neutropenic sepsis a few weeks ago because I had none. I  had a temperature of over 40, a bp of 60/30, shakes, sweats, delirium and wanted to die.

Make sure your neutrophils are up and that you monitor your temperature religiously- you don't want to end up like me- even if waiting is a pain in the bum!

[berylperil]

Hi all, 

Well today hasn't gone to plan. Should have been last chemo. Platelets too low so despite recheck this morning have still have not made the grade.  Was tearful with disappointment as am now delayed by a week. Bring on those throat ulcers, belching, gagging and bloating for the Christmas feasting....

Am feeling deflated and fed up. I know it's protocol to keep me safe, but I had built myself up for a celebratory last session and now I have to sit and wait. 

Am not very patient either!

In other news, I  have date for surgery in  the New Year and  a plan going forward for rads early spring so that's positive at the very least. 

Over and out sitting here with my steroid induced pink cheeks in full flow, (like badly placed blusher),  looking like I am all dressed up and nowhere to go.... 

Beryl  x

[Naomi40]

Thank you everyone, we seem to be okay for the time being.

 I had an appointment at the doctor today because I found a lump in my groin. He said it’s a cyst and has put me on antibiotics for a week and said to see the female doctor when she’s back as it could grow and she can double check it. He then said to me even if it’s something serious it won’t matter as you are already receiving chemotherapy. Was not quite sure how to take that. 

[berylperil]

Dear Naomi, 

So sorry you are having such a tough time. It must be hard going through this when your partner lives a distance away. I am thinking the weekends together are maybe something you both normally look forward to,  but right now is all about getting through each day with this physically and emotionally punishing treatment and disease. This is such a rough time on us and our loved ones. I hope you can get through this together. Am willing you on, take care and sending hugs.

[katttz]

Hi Bethybluesky,

The construction malarkey is quite a journey in its own right! 

I have 10 year old twins so also quite self sufficient but also very demanding too. I’ve managed to keep home life pretty much the same for them, but put myself on strike this weekend and let husband take the load! Xx

[katttz]

Hi Naomi,

hope you’re feeling ok. Your weekend sounds pretty s**t! 
I’ve argued with my husband too and it’s bloody awful although I must say we need to be cut a bit of slack. Unless you’re actually going through what we are no one will fully understand the emotional journey and we all cope in different ways. 
My chemo nurse did tell me that things do get more emotional in the latter part of chemo and we can feel more tearful. 
Being told to ‘toughen up’ is downright mean. Don’t ever feel guilty for trying to get through this, we should be putting ourselves first to help us beat this awful disease.

Sending positive vibes your way Naomi 😘😘

[Naomi40]

Had a really crap weekend, huge argument with my partner. Got accused of being not as affectionate as normal and asked if I was being unfaithful. I got so upset and I cried, something she has made me do a lot this weekend. I broke down in tears Saturday afternoon because the reality of what I’m going through has finally hit me and even then she was still not very nice to me which caused our big argument. She then says she thinks my feelings have changed which they haven’t but I felt so unwell this weekend very lethargic and sleepy and as we only see each other on weekends (don’t live near each other)that’s where her accusations started flying about. I felt very hurt and angry by it all and find myself apologising for not being affectionate even though I didn’t realise I wasn’t being affectionate. She tells me she thinks she hasn’t been as understanding and sympathetic as she could be and that she’s finding it difficult to. I understand that she is and I always listen to her when she’s having problems but I just get told to toughen up and I need to get to grips with things or when I cry she says to me don’t cry. I feel so hurt still by how she has been towards me also comparing me to an ex who wasn’t always affectionate even though I said my situation is different. I’m sorry about the long post, I’m not even sure what I’m supposed to feel and maybe I am the one in the wrong. I just feel so upset by how she is and I’m not sure if we will get through this tough time. 

[Bethybluesky]

Hi Kattz,

From a medical point of view, I  dont think the seroma was a problem, but my boob was sloshing around like a hot water bottle and I  was in a lot of pain. Some of the fat from my back that was used for my reconstruction has been reabsorbed and I'm due liposculpture or a small implant now. This will happen after radiotherapy because of the impact this can have on breast size and shape. My operation was in July, and although the large scar has healed well, things are still settling down.

My kids are 10 and 12, so reasonably self sufficient but my mother in law had the dog and my mum moved in to nurse me for a couple of weeks which I was incredibly grateful for. How old are your kids? Are you able to get help post op?

[katttz]

Hi!

Bethbluesky:

what month was your surgery and how have you healed, did the seroma complicate things? 
I must admit I don’t want to be kicked out of hospital as a day case after my op. I just won’t be able to rest properly at home with my crazy kids! 
I've just had to google your licap procedure. Are you pleased with it? 
I initially presumed I would be fine for a reconstruction during mastectomy. The surgeon told me I don’t have enough of my own tissue(back and belly) so would need an implant. However as I’ll now need rads it’s not advisable to have an implant before this due to possible complications.
Thanks for highlighting arm exercises as a must do although I am really anxious at the prospect of developing lymphodema ☹️. 

Berilperil:

Lots of good questions for your surgeon. They must base surgery on MRI results as well as chemo response. I was always having a radical mastectomy regardless off response to treatment so, ‘thankfully’, I’ve not had to consider other surgical options. 
I went in quite unprepared as they only rang me about the appt 2 days before (they obvs forgot to book me in!). 
I met with the BCN afterwards and I’m seeing her again early Jan . Due to having rads I know it’s best to have the op minus any thoughts of reconstruction at this point. I’m happy to accept that for now. I just want it all gone now with clear margins. I have a node that needs removing from my chest wall... not the easiest to get to as I found when they tried to put a marker clip in 😫. 

I think this next phase has hit me more than I thought and the reality of this impacting on my life  so much has hit hard.

When anyone asks ‘how’s it going?’ be it friends or medical professionals I seem to give the same response. 
I say life at home is ticking along as ‘normal’ but I have hibernated from my social life. I think this hibernating is taking effect on me know and I’m fed up 😢. 

Meeting a friend for a cuppa in a bit though, she’s got boyfriend trouble so I’ll get the low down which will distract me from my own woes 😉

xx
  

[Bethybluesky]

Hi Beryl,

Although I opted for a lumpectomy ( I  read that lumpectomy and radio are as effective as mastectomy), it turns out I  had about 80% of my boob  removed! I'd had my tumours injected with markers under ultrasound prior to surgery but it was still unclear where they started and finished so my surgeon took plenty of tissue to make sure- and did get good margins. They don't really know until they get in there and they want to make sure that they don't need to go back.

[berylperil]

Morning ladies, 

I am off to see the surgeon next week. I don't seem to have a clear understanding of the determinants for a lumpectomy vs. a mastectomy? If it's the latter how do they know if there has been adequate response from the chemo pre histology results? Is this why they delay reconstruction? Does both lumpectomy and mastectomy options have radiotherapy follow up? I have many questions! 

I have been semi prepared for possibility of further chemo post surgery (tablets) to kill any remaining active cells if the histology shows the chemo response has not been comprehensive. I think this is because I still have a palpable lump, I think they expected it to disappear entirely when they attached tags to the two sites I have back in August.

Feel very  dismal at prospect that there are more hurdles to face. I have lived in 21 day cycles and I think whilst this has been awful at times, it's also been a security of sorts. Coming to the end feels scary as I know have to shed this treatment security blanket and face the next stage. The challenge ahead for me is not so much dealing with the actual surgery procedure, in my mind it's the 'has it worked' question that will follow. This part of the triathlon is whole new reality of the cancer journey. As triple negative with no ongoing hormone treatment, I am pretty nervous and I feel like the stakes are just so high at every stage and phase. I do feel  great trust in my oncologist and surgeon, I am very thankful for that. 

[Bethybluesky]

Hi Kattz 

I had surgery prior to chemo and had a licap flap reconstruction. Although I didn't have drains, I  almost wish I had because the seroma build up was excruciating! I do think you get booted out rather early and I  was pretty wired from anaesthetic and opiate pain killers but soon got myself onto ibuprofen and paracetamol. You do feel relieved and grateful that the cancer has finally been cut out which is probably the most important part of all this treatment! I had no understanding of the fact I would not be able to use my arm on the surgery side but did the breast cancer physio exercises religiously and have full movement back.

[katttz]

Evening all, 

hope we're all getting through a relaxing and hopefully pain free Sunday night (with the help of meds for me).

A week into 5 th chemo with final one booked for 23/12.

Met the surgeon on Friday and have been booked in for 23/1.

Next phase has suddenly become a reality. I’ve been told I’ll probably need rads too ( I’m thinking this is due to my ‘partial’ response  to treatment) Briefly met BCN and discussed the ‘what next’ once the op is over. Not having a recon as I need rads so I’ve joined ‘Flat Friends’ Facebook group. Looking at options as a uniboober.

Has anyone had their surgery yet or are we all neo adjuvants? X

[yorkshire_defector]

Naomi

Good to hear from you, when on my one (and only, am glad to say!) paclitaxel (I was on a 2 wk dose) I also had the aching legs & hips so feel for you.  I do hope your team are giving you pain killers, and if they're not working have you told them, especially as you've got another 6 blummin' rounds of them.  Although that said doesn't seem like you're doing well on other meds eh?  Sorry to hear that.

I've been so luckily throughout as meds have prevented things that would have/may have happened (am not one to play Russian roulette with meds so generally do as I'm told). And, like you, have found that appetite has been pants at times but thankfully ( as am a little piggy who firmly believes in 3 square meals a day) when prepared food enjoyed it (apart from some of my new, time on my hands, culinary experiments...less said the better).

Onwards & upwards eh. And just over a month before the worst part of the cancer adventure is over..

Sam X

[berylperil]

Hi all

I've been quiet from me  but for no real reason other than just ploughing on.

I too have the feet issue on docetaxel and agree Sam this stuff is Cillit Bang with bells on!  So it's last one on Thurs of this jungle juice (keeping it seasonal here readers). Really hoping that my bloods hit the right 'scores on the doors', have a feeling my platelets are too low as my nose keeps bleeding! Don't want a delay by a week as is protocol or Christmas  feasting (and drinking) really will be a bushtucker trial! 

No Christmas decs up yet, am always a late starter on this, but have got my shopping largely out of the way. I have also been out to my first Christmas Lunch (shovelled in 3 courses, get me!!), this was a tad ambitious as I held onto it for a short while before making a hasty dash to a busy department store toilets (the shame)!! 

Let's see what fun and games this week brings... 

Bez/Pez

[Naomi40]

Hi Sam

Hope you are doing okay.

I’m having weekly paclitaxel and have 6 more treatments to go. Hating the side effects of Joint/bone pain and my appetite is virtually non existent. I have a picc line and I get slightly anxious when my arm or shoulder aches or I get achy pains in my chest. The last 2 treatments I have had an upset stomach but can’t be given medication for it as it makes me feel worse. My skin is so sensitive that the dressings for my picc line irritates my skin. My last treatment isn’t until 14th January, will be glad when that part is finished 

[yorkshire_defector]

Hi all

Am hoping little activity means that you've all had no side effects or have finished chemo??

I've restarted EC after having been (literally) de-feeted by accelerated paclitaxel (peripheral neuropathy), managed to get oncologist to agree not to keep me on that nasty cillit bang, Barry Scott I now don't like you very much at all having put my disco dancing days behind me...Feet are improving, very slowly.

So all jolly good here and looking forward to my final (yays all round) EC chemo on 27th Dec, I just feel really sorry for then lovely nurses on the chemo ward who I know (yeah right) will miss me and my chat (!).

So its Christmas jumper (the boyfriends, who is 6'3'!) Everton style for bloods & doc meet on the 24th.

Hope everyone has that Christmas feeling, I've got tree up, presents bought and just cards to get delivered and written.

Sam X

[Bethybluesky]

Thank you Naomi,

My oncologist has cancelled the Docetaxel cycle I was due to receive next week and asked me to meet with her to discuss things the week after.

[Naomi40]

Thank you mini mad 

It does look like it’s bled quite a bit but I don’t feel unwell at all so I’m just going to leave it until Tuesday and see what they say about it at the hospital when I go for chemotherapy. I’m suffering with dreadful aches in my legs and my stomach and occasional little aches in the same arm as where the picc line is but I’m sure it doesn’t necessarily mean it’s infected well I hope not