Hi Everyone. I haven’t posted in a while but I am reading posts and keeping up with everyone’s progress. Glad to see that we are all managing or having minimal side effects. I have been asked by the onc to complete a daily web based app that keeps track of your SEs and if anything is out of the norm it gets flagged to the chemo Help line and you get a phone call within the hour. Is anyone else using this? I think it’s a great service and provides reassurance that your not o your own.
With all the talk on hair loss and wigs - made me think I’m on FEC the whole time, so I might start growing my hair back in time for Christmas!
Ha ha love the Chemojies!!
Katie - just back from onc appt and with confirmation of BRCA1 my treatment plan has changed. I’m starting weekly paclitaxel x 9 on 6 July so we can compare notes with the addition of carboplatin once every 3 weeks which is supposed to be really good for tumours caused by BRCA1. She said " let’s just throw the kitchen sink at it" lol
Are you trip neg too like myself and Heather?
Shows the importance of chasing up the genetics testing I didn’t think it would make any difference.
EC seems to be doing its job anyway - lump is now half orig size, according to the handy measuring tool they use and the onc has requested another ultrasound to check this (a bit more scientifically!).
Two more EC to go - this Thurs and 22nd June
Rosie65 - half the size that’s wonderful I’m so happy for you it makes all this more bearable knowing it works - good news I’m celebrating for you I’m unwrapping a Lindt chocolate ball and enjoying it as my toast for you xxxx
Mai7, I did it. I wasn’t going to do it today I spent all night awake worrying over it and then thought what’s the rush I can do it next week or at any point. This morning I was trying to make myself presentable for my outing and my hair was frizzy and coming out and I felt awful.
When I got there the lady said no pressure I can go back anytime for the shave (that filled me with dread as you know my 1st experience in the salon didn’t go very well) anyway I tried on my wig and she trimmed the fringe etc and I told her my head was a bit sore and the wig was putting pressure she said that once my hair was out that would ease off and then it will feel more comfortable and then she told me how a lot of people shave before necessary because it feels more comfortable the kind of pressure feeling when you touch your hair goes. I pulled off the wig and strands of his come with it and into my coffee and it suddenly dawned on me this is going to get worse and messy over the next week or so and did what an extra few weeks of hair falling out, being paranoid of washing and unable to style etc so I asked her do you still have time to do it.
She said yes - clippers - buzz - 3 mins later I’m looking in the mirror at my bold head and amazingly instead of feeling upset all I felt was relief.
The hair thing had been playing on me so much and I think now it’s gone my anxiety went with it. I’m happy I did it. Maybe later as reality kicks in and I have to rely on the wig and scarfs I’ll have a wave of panic I haven’t been out yet but so far so good no regrets and the scalp feels free and the tenderness has improved
I’ve done it it’s another step ticked and completed
Xxxx
WolfEE well done. It is a sense of relief. You do dread it more than anything and the realisation is relief and kinda dont care!
So pleased for you rosie65. Must be a relief. Yes I’m triple negative too. Glad someone else is on same as me. Was feeling a little daunted at weekly! My oncologist also said I would have other is genetic testing is back and positive but don’t think it will be back in time.
Busy bees that app sounds good. I haven’t heard of it before x
Mal, it’s a generic tool I think, but it has been customised by the hospital as there are videos on there with the onc and a nurse I recognise. It’s only recently been taken up by the hospital I’m at. You have to be prepared to fill it in every day to generate the overall picture for the regime.
Thank you ladies for your good wishes. I am celebrating by sitting here in my newly acquired colourful turban.
Like you WolfEE I finally braved the shave, you articulated exactly how I felt about my hair. Now I just feel complete relief.
The wig (as yet unnamed) has been cut and shaped today to suit my face and I’m really pleased with it. Bought some scarves/hats too.
Katie - I’m also a bit daunted by weekly. I’m currently working from home but may have to forget that in July/Aug. I must have looked a bit crestfallen when she told me as she said “don’t worry you will get through this”
Onc upgraded my goody bag by adding Buscopan and Difflam mouthwash. Wonder if we’ll get a balloon and a slice of cake with our last treatment?
I definitely have goodie bag envy. I think the hospital have the minimalist approach. I only got the anti sickness steroids on my last visit as I had tablets left over from the previous treatment. Shouldn’t complain as I obv don’t need too much. Fingers crossed it stays that way.
Glad you’ve got supportive friends. I’ve got the PICC line flush this morning too. The Limbo shower cover has been great. Mai7 here’s an I’ve been brave sticker for you. ?
Love the brave sticker ? This is me today I’m going out popping in2 work and I can’t stop thinking about germs ? And it’s my first time out with the wig!!! I’m up, showered (and yes it was wonderful not having to dry my hair) because of this I’m now ready to go but it’s to early so sitting nervous watching the clock! Wig already feels heavy! Wonder what they are like in the rain?
Have a good day eveyone xxxx
Trish, I’ve got big bro recorded I’ll watch them going in when I get home this afternoon. I also need to watch a few back episodes of game of thrones at some point ready for new season - can’t wait
Morning all. Lots of brave ladies today. Well done guys, I love hearing you cope helps pick me up when I wilt. . If my chemo brain is correct good luck Annie with the line. I think its this week??
This is my germ avoiding week so staying put today. I have got some cravings and long to mooch in Waitrose ( we never shop there - but husbands at work and if I eat it all he will never know ?)
I am round 2 day 8. SEs are arriving but about 4 days later and much less severe. Mouth is rough today. Will try mouthwash as I now have 2. I had a bit of a meltdown with my injection last night . Only one more this round. I can do it !!
Hi Rosie. Great news about your lump reduction Tha must put a big smile on your face and help you keep going. I have a carboplatin chaser at the end of my treatment day cocktail. (it was the only chemo my mum got for ovarian). This one is my quickest bag. Only takes 30 min but is fresh out the fridge so is bloody cold.i wrap my cardi round my arm and sit in the sunny chair ? 
Mai7, the website is vitrucare.com but I think you have to be set up by the healthcare team to get access to the app.
Glad most of us have now had the shave. It makes life easier to not see the hair falling out in clumps. I didn’t like the idea of a wig and I only wear a hat if my head feels cold.
Only 1 week to go to my 3rd treatment - Time seems to be flying by!
That sounds really interesting busybee. I would use something like that if my phone would work. Mai what goodies are you requesting? Always nice to know what is on the menu at other hospitals.
Ashley is staying in the box today. Some days you want to be normal but can’t be bothered today. I am staying in and going braless and wearing a bold pattern scarf. Today I rock chemo patient. My mum is popping over later and I know the first thing she will go is ask me to take my scarf off.
Hi everyone I’m just back from having my Hickman line in. Obviously it wasn’t nice but it wasn’t as bad as I let myself believe and I actually feel quite proud of myself. Now comes the worry of looking after it I guess. I’m already questioning why the dressing is so bloody ? Xx
Well done Annie. ? brave award for you too. X
Well done Annie . Glad it wasn’t too bad. Try to get them to give you a time for when they come and flush it so you’re not sitting around waiting (like I am at the moment)?. This is why I do my own injections… Still, I have coursework for my diploma to do. I love the lion picture Mai.
Hi daffodil. My hospital gave me a voucher and recommend 3 places nearby. Talk to your chemo nurse. Go try some on. I love my short cut.
For headscarves it depends what look you’re going for. I know there are quite a few makes out there so it’s worth a look on somewhere like Amazon or Amoena. As was a bit of a watersports / hiking kind of girl I’m using my Buff headwear which feels more ‘me’ and are very easy to put on. X