Treehouse, I went grade 2 and found it easy to manage as you don't have bits poking out! Did your family upset you or was you ok? After I shaved my head I sent Mum a black and white photo of me so she could react away from me and she's only seen me in the wig since! I told my mum right from the start that she is banned from crying in front of me. She has to be my strength and has to go elsewhere to weep! It may seem harsh but it works as she always seeks strength from others and comes to me strong (a bit anxious sometimes). I can't cope with weepers, I just wouldn't know what to say and it would feel like it's my fault. But that's my way of coping....... Xx
MJK, I think we are all kittens looking in the mirror and trying to connect with our inner lion! Has your attitude changed at all towards your diploma since your diagnosis. Has it increased or decreased in importance for you?
Well done Annie on having Pic line success. 🏆
my daughter has lupus so we are quite sun aware, but it appears that anything above a factor 30 actually blocks the healy effect you get from sunlight too... you live and learn!
there is the option of a collection of fabulous hats, from the internet and quite cheap, two arrived today - a velvet paddington cloche and a lovely grey with crochet flowers. Also have indoor hats and caps and scarves. Not usually one of make light of difficulties, as a right old grouch recently, sometimes we need to be the best of what we are at any given time. For me, that's the hat!
late reply and hope you are much better now, but .. I made up a mouthwash gargle of bicarb and lemon juice, as it has some anti bacterial .properties, and I have also been using it is an air freshener - just a tiny amount of bicarb (as it will show is wee white things around the room) distilled water from the kettle, proprietory lemon juice. Or fresh if you are either organised or posh, nt like me! Threantened mouth and throat issues have not deveoped, though I bet they do now, but hope this helps .. poor you
Where did you get a decent wig from? Am looking to get a funky short one after I cut my hair short. Also any chemo scarf advice.
Treehouse, I think you've already got them all lol, you're the ultimate carpetbagger of the goody bag! I'm going to ask for some Difflam in case I get ulcers again and some Movicol, I'll also ask for Omeprozole to be added at some point but have some left for now from an old GP prescription. I think we've all exchanged notes enough to go and give Onc's pressure for the best of everything! Good luck with your Mum's inspection and rocking the chemo scarf!
Thanks BusybeeS, I've made a note of the website and will mention it to Onc tomorrow. Im going to try and get a couple of upgrades on my goody bag too!
Aw, thanks MJK, I feel very special now with my bravery award. Here's one for you also 🦁, hey, just hope I don't turn into the lion in the wizard of Oz! Here's a pic of a card from my Mum which we all deserve to share:
Been awake since 2 am watched BGT on catch up,was fun to watch 🙂 Quite a lot of hair appears to be shedding, hey ho is inevitable. Feel pre menstural, tearful and moody. Nurse at 9 to clean/flush picc line. A friend coming over service my bike and cook me dinner and give my wonderful friend Jilly a break xx
WolfEE, well done on braving the shave. You'll find having a shower so much quicker now and wig-hair just has to be put on and looks like you just walked out of the salon! Will we ever want to go back to our own real hair and all associated mantenance!?
busybees, do you have the name of the web app? If so, I'll look it up. I've been keeping a huge spreadsheet so far.
Rosie, on my last chemo I asked the nurses whether I'd get an "I've been brave" sticker!?
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?
Wolfee well done, so pleased for you, I had such a sense of relief when I did mine as I felt it was always there and becoming obessed with hair coming out every day. This way all the stress has now gone for you. I find I wear mainly scarfs and feel really comfortable in them and you can get really pretty ones to.
Rosie, and I'm sipping a celebratory peppermint tea in honour of your shrinkage! Size matters! Best of luck with your new treatments.
BusyBees, your online SE monitoring is a great idea. Is it a generic web tool or unique to your Hospital?
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
WolfEE, glad you got the tribble, ready for your life to be filled with Trials and Tribbleulations! Did the hair shave take place or are you still hanging on to it for now?
Treehouse, have you been taking your Omeprozole or are you still getting heartburn with it? I think I've worked out that I only get the bad heartburn around days 7-13, same time as sore mouth, which correlates with low immune period.
Raitchr, sorry to scare you with talk of T! I've worked as a forecaster so can't resist a bit of trajectory and extrapolation. Although predicting T effects will probably require a crystal ball! Glad you have your side effects well managed now.
Katie, if your med ends with Taxol then it's in the same drug group as Docetaxel so we can talk over T.
Think I maybe the T guineapig, got last FEC 22 June, not even thinking about the T yet! Day 5 today and better than 1st cycle. Just tired but making the most of boys being back at school. Mouth is ok but a little sensitive, no constipation this time!