Amber/Mel - thanks.
My BCN is soooooo scary even my surgeon gets told off by her - my friend said she hates coming to the appointment because she always feels like she is getting told off when she asks a question on my behalf.
Guess I’m just in limbo land for a bit longer (I got dx early feb - seems so long ago just want to get on with things and know what I’m actually facing)
Does anybody elso know what lymphovascular space invasion means in reality???
Meemo - Mel is right. You need to speak to the professionals about this. None of us here is qualified I’m afraid. I can so understand what a shock this must have been for you. Please try not to Google, although this is hard to resist. Please speak to your breast care nurse ASAP and try to get a quick appointment with the oncologist - he is the expert. Take care sweetheart xxxxxxxxxx
Meemo what about phoning the bcc helpline? Someone there may be more qualified to help you and easier to talk to than your bcnurse.
FEC-T Cycle 1 Day 17
Wow! Only a few days since posting and can’t believe how many new members. The number of people affected by this is astonishing and very very sad - I hope everyone finds some support here.
Hope you are all coping with SE’s…it’s a great feeling when they subside!
My hair started to fall big style Mon/Tue (day 13 & 14) so day 15 I made the decision to have my hair shaved off!! Wow what a change - I have been dying my hair for years and although I knew roots were greying I had not appreciated How Much!!
At least I know how it may look when it returns and I can decide later how to manage it. Day 2 into my new ‘do’ and I have to say…its s bit chilly out. My wig needs trimming so until that is done I am relying on my hats. The hair loss is all over and not at all patchy so can get away with the cropped look for the moment, also it does not appear to fall as rapidly since removing the weight.
I can recommend the Headstrong class run by Mcmillan Nurses a great chance to try on different hats, scarves etc, they also gift you a scarf combination to take home.
I have booked into Look Good Feel Better on Monday so will let you know how that goes.
Take care everyone, I hope you all have a peaceful weekend
Love Lori xx
Hello everyone, I’ve been catching up on how everyone’s been doing while I was away over Easter. Sounds like quite a few people are now well into the routine. I came back Saturday and then had my third excision this Monday. I’m still hoping to start before the end of April, I get my results on the 19th and if margins are clear this time I know they are keen to get going asap.
One lesson I’ve really taken to heart from reading posts over the last couple of months is to tell the medics when you aren’t happy about something or have a problem. For one thing Its pretty clear that there is variation round the country in what is offered to us to (for example) help with side effects. I felt really unwell after my 2nd GA and also with some of the painkillers and my BCN suggested I might be sensitive to morphine. I talked to the anaethestist and he tried something different (think I had fentanyl instead of morphine), and I came round in recovery much more clear headed than before and was back to normal right away. And they were all pleased that it had gone better for me too!
I think a lot of us are probably not used to asking for things to make our lives easier - but I’m gearing myself up for doing this when I see my oncologist.
x
Deborah
FEC-t Clycle 1 day 5.
Had slight warm feeling when going to the loo last night. Woke at 5am with tummy ache and took paracetomal back to bed. Woke up with slightly red face and neck but temp ok. Feeling better but panicky.
I know the BC nurses are good but they have to be hospital is an hour away on rural roads with lots of tractors & tourist traffic and i live in a rural village just outside a popular tourist seaside town. The GP operate a ring between 8am & 9am to get same day appointments. Its nearly always engaged and when you get there its nearly always a 1/2 hr wait in a packed waiting room. They have said they can get me in quickly but the problem is getting through for an appointment time. Hospital tel also engaged. Going to try again. Sorry just needed to type, cry, and feeling sorry for myself.
xxxxxx
Hi Primrose,
I hope you have managed to sort something out, and sorry you sounded really distressed.
The best course of action is to phone the out of hours emergency number given you by the chemo nurse. They will tell you exactly what to do.
Please don’t even consider going to your GP surgery. This is NOT wise. Surgeries are full of germs. Your GP should be able to prescribe something over the phone. Do not let any receptionists fob you off - you are receiving chemotherapy and as such can be treated as more urgent.
Hope you are sorted xxxx
Hi Primrose as long as your temp ok you’ll be ok it’s sounds very normal what you are feeling. I also live in a rural area an hour away from nearest hospital.Try not to worry too much just keep an eye on temperature.
Annabelle x
Hi Primrose
The Helpline has just opened and will be open until 2pm if you are struggling to get hold of the hospital. They’re on 0808 800 6000 and will be able to discuss your concerns with you and offer support.
Kind regards.
Louise, Facilitator
Fec T, Cycle 1 Day + 5 (or is it FEC - D, according to my gp it is, I’ll need to check with Onc!!)
Morning ladies, not a great start to the day. Doc just gone and prescribed anti biotics for this damn cold. She said it will be my low white cells and gave me ABs incase it gets any worse (I thought it was a bit early for low white cells but apparently not). I phoned NHS 24 simply to ask if it was ok to take regular caugh bottle / lemsips etc so guess it is a really good service that the doc came straight out no questions asked 
Apart from that, mouth is raw but still no sickness, thats all my anti sickness tabs and steroids finished now so here’s hoping …
Got my app for LGFB on 22nd so looking forward to that, just need to sort wig now
Meemoo - so sorry I can’t help you must be going mad with the waiting about and lack of clarity, it’s the most awful part. I hope you get answers soon. Have you tried your own GP, mine was very good at explaining things and very knowledgable
Diggywiggy - hope you start to feel a little better soon xx
Amber - hope you get to enjoy your swing, well Jell!!!
Hope you all have a relaxing and S/E free weekend
Take care, Pauline xx
Oh Primrose … sorry I can’t help you but I am thinking of you and wish I could give you a hug x x
Fec-t cycle 1 day 12
Woke up feeling fine this morning despite a late night and a glass of vino! Hair shedding all the time now not clumps but continuously finding hair everywhere and even if i touch my head i come away with a few strands, putting on moisturiser is now a real nightmare lol! My head has been itchy for days now so i suppose it wasn’t different shampoo after all.
Primrose - i have a dull ache in my tummy all the time too, a it like v mild period pain. I thoughtit was case i was due on, but it could be a s/e of the fec? Hope you get advice, espeially if its worrying youand put your mind to rest.
Amber - will wait till the kids are back in school and arrange to meet up if thats ok with you, my husband works on supply ships and is away for another 2 1/2 wks yet, that will make it easier for me.
I think we need to be asking more questions when we got to appointments instead of maybe nodding and agreeing with everything thats said then going home and trying to remember what was said or having lots of questions we wished we’d asked. I write my questions down now and am planning to ask them at my next appointment.
hope all you wonderful angels have a lovely day without too many s/e.
Christine x
Thanks for the advice about phoning the Help line … I did and feel soooooo much better.
I was told that it was quite normal to have LVSI on a pathology report but that a lot of consultants dont bother to mention it as it doesnt often change the course of treatment they are going to give you anyway. Feel so much more at ease now. AND the lady was just so lovely to talk to.
xx
Hi ladies ,hope im not here under false pretenses but feel i will prob just manage to sneak into awesome aprils am seeing oncologist on tues had op 14/3 ultrasound had shown no cancer in lymph glands so was devastated to find out it is in lymph glands had a couple of days were they were unsure whether to go back in for surgery for complete clearance and further breast surgery as didnt get clear margins or do chemo first. i was in dark place for those 2 days but now i know whats happening have got my head round it and ready to move on so just wanted to say hi xxcaz
ps can i just ask ive had mild flulike symptoms for several wks now just irritating as its dragging on anyone else have this my brain is sending me places i dont want to go then i think well youve had 1 shock after another your immune system is bound to be struggling at moment
Fec-t cycle 1, day 3
primrose hill - do hope feel better soon.
Didn’t get up until 11 today - been getting up and dressed every day by 9 since the DX in Jan. Anyway when I finally came down there was a huge bunch of flowers from my work. Really helped. Feeling down and still a bit sick but eating a little and often.
Never Google - always phone the helpline!
Hi Caz D
I had similar situation had WLE in Jan - orginally didn’t think any lymph nodes involved but then had more surgery end of Jan to get clear margins and full ANC. Have just started chemo (Fri). Was a bit sick first day but feelling OK -ish if a bit woozy. Hope it all goes well for you. Maybe have a word with BCN about flu like symptoms? BCC helpline is also brilliant if you want to talk things through. Just try and take each day as it comes.
NB x
Hi
I am a bit late as I already started my Chemo (FEC) on the 4<sup>th</sup> April but was wondering if I could join your group as I find it hard speaking to the OH and friends.
I am going back to work on Monday and was wondering if anyone else is still working thro the Chemo???
Kels
Hi
Fec-T cycle 1 day 13
Hope you all have had a reasonable weekend
My sore throat and cough got worse yesterday and ended up op phoning NHS 24, was told it was probably viral and to take ibprofen and a cough medicine, my temp was ok and I do feel a lot better today.
Decided to take control of the hair yesterday, one of my friends whose a hairdresser cut my hair which was past my shoulders and quite thick, then she handed me the scissors and told me I would have to cut hers. She had decided she wasn’t going to let me go through this on my own, so a few tears later job done. OH took lots of pics and Iam going to donate our hair to the Little Princess Trust who makes wigs for children. My scalp has been sore today so I reckon I timed it right, would have been more painfully with long hair. So the wig is ready To be let out!
I made up a playlist on my ipad for going into hospital for my op, I asked all my friends and family to choose a song and included songs s from past and present which are very poignant to my situation now. Two of my favourites are Step by Step, Whitney and Stronger! Kelly Clarkson. My hubby and I also play High Hopes by Kodeline everyday to get us through. Check out u-tube for Seattle childrens ward Stronger. if I ever think things get tough I watch this and think hey if these kids can do it so can I.
Lori - I wasn’t brave enough to shave but think it won’t be long before I have to
Primrosehill, Diggy, Pauline -hope you’re all feeling a bit better also anyone else suffering the dreaded s/e, it does get better, honest.
Cazd, Norabatty,and Kels35, welcome to the gang
wishing you all a good nights sleep and minimal s/e xxxxx
Hi AAAs and welcome to the new members.
It sounds like some of you are having a rough time at the mo with SEs and infections. I hope they don’t last too long.
Amber well done for taking control of the hair situation. Your hairdresser sounds like a very good friend and it’s so nice that you have used uour ordeal to help others. That must make you feek so much better.
Meemoo I’m so glad you’ve been able to speak to someone who could put your mind at rest. It’s so good that there is helpline available for advice when we need it.
Sleep well ladies. I hope tomorrow is a better day for you all. xx
Hi all thought I’d share my week with you. Monday hospital blood tests, meet chemo nurses, tour ward etc. Tuesday dentist. Wednesday wig buying trip. Thursday hospital to fit picc line. Friday start chemo. All feels very daunting. After weeks of waiting I do just want to get on with it though. Bring it on! Love to all you angels dealing with s/es guess I’ll be joining you. Is anyone else being treated at QE Birmingham? Anyone having E-CMF? I’m having the E bit for 4 cycles then radiotherapy then 4 cycles CMF. Seems to stretch on through most of the year, so I can only think short term- too much to take in otherwise.