Just been catching up with all the posts, haven’t been near the computer for days. Hope everyone is doing well at the moment and SE’s are manageable. Off for FEC numero quattro in half an hour, can’t concentrate on anything. Had the blood test from hell yesterday, I don’t think there was any blood in my left arm yesterday! Anyway after an evening of heat packs it’s improved a lot this morning.
Bye for now ladies love to you all, stay strong x
Hi niknak-good luck for today.
Spooky-I keep falling over and typing is a complete saga. I’m sure my motor skills are not what they were.
Tax wasn’t quite as bad as I thought-though bone pain in my face and jaw has been a bit of a suprise. I have bad thrush and sore throat too. I’m going to try and venture out today for a bit.
Anne, lots of people who work with kids have to stop work so try not to feel too bad. I go in now for one week in three just to keep in touch really (and the full pay issue is pretty important too!)
Hi to all Sapphires-more than half way now xx
Hello all you lovely Sapphire ladies. It’s a grey miserable Wednesday and I haven’t posted for a couple of days so thought it was time to get on the forum and have a good old rant. Anne - I used to work with little children too (nursery age) and loved my job but realised it would be totally not good to work in that environment whilst in the middle of treatment. I have flashbacks of working days when I have had children ask me to help wipe their bottom, or who have sneezed all over me or the activity (usually playdough!) or wiped their runny nose on my hand,head, shoulder etc and think that was okay back then but wooo not such a good idea now. Don’t beat yourself up about it, you have to keep fit and well and it’s okay to be a bit selfish. In fact, it’s okay to be a LOT selfish - its the one time in your life you can be. Gosh I used to work with a lady who couldn’t deal with bodily functions at all and we had a great time once with two pre-schoolers - 1 being sick, the other with raging diartohea, me with gloves and aprons trying to clear it up and my colleague projectile vomiting at the same time- you really don’t want that and chemo - not a good combo!
Totally agree with you Sukiem on the whole falling over thing. The whole “room is spinning” thing is getting rather tedious now - its like recovering from a bad hangover which would be fine if I could stomach being raging drunk but can’t even do that properly at the moment!
On a more positive note, they finally found a sonographer who could do arms and all fine on that front. And I spent a great afternoon up at the Fountain Centre yesterday with David and his lovely ladies on a “Look Good, feel better” therapy session. I came out with eyebrows (although one was slightly higher than the other!), smelling like a beauty parlour, still bald but definitely feeling a bit more positive - we had chocolate too which is always a bonus. Lots of freebies too- like an early Christmas pressie - so ladies if you can get to one in your area can thoroughly recommend it.
Feeling a bit more positive today. Only one more chemo to go. Then I can turn round and stare that beastie in the eye and say “You know what, you’re not so tough chemo, I took you on and I am still standing. So there!” (and then I might run away very fast in case he swings back and punches me in the nose!)
Seriously though ladies, we can do it, we can do ANYTHING! Cyberhugs to all you warriors out there - kick the blooming thing in the teeth! Hope all your SE’s minimal and you are all coping ok. X
Hi Sapphires-just wanted to check in as its a bit quiet at the moment.
I’ve found my first tax much easier to deal with than FEC although have had nasty gum abcesses and a white tongue (sorry-TMI) together with a definite loss of balance.
I went to see my surgeon today who was pretty adamant that I’d be having a mastectomy rather than lumpectomy mainly due to the disparity in my MRI and ultrasound (which indicate my tumour is 2-3cm) and the fact that it feels larger although is shrinking a bit with chemo. She wants to remove it all which I guess is sensible. Shes recommended an implant and something called a strattice (which involves a ‘hammock’ made of pigskin that holds the implant). Weird and wonderful.
I was also told that I’ll be having surgery 3 weeks after my last chemo-my hospital does turn it around v quickly!
Just to say I hope everyone is ok and that whoever is off to the Younger Womens Forum this weekend has a great time ( I know you are keyfeatures) x
I have a new and exciting SE - benign paroxysmal positional vertigo (BPPV). Well, I assume it’s a side effect - maybe it’s just bad luck. It’s caused by a particle of calcium in my inner ear being sloshed around and I have to say it is the most horrible feeling. I do like the word ‘benign’ though. Benign is nice for a change.
The only symptom is that when I’m lying down flat and turn over I get severe vertigo. Standing up I’m fine, which is just as well. But rolling over in bed makes the room spin so violently I have to hold onto the mattress to stop flying off it!
Anyone else had this?
It should, in theory, go away by itself eventully. In the mean time I am to deliberately trigger the vertigo, as it will help my brain to deal with the response. it doesn’t exactly help with chemo-nausea though.
Crikey Peg that is an exotic s/e. You poor thing it sounds not nice particularly when you feel sick anyway. Take care x
Hi all,
Spooky, did you have eyebrows when you did the look good thing, i bought something ready from benefit with wax and powder, is it easy to explain what tips you were given? i havent noticed mine disappearing yet. thanks for your messages about school. i know it would be really stupid to be there, and i dont miss it all the time, im no good with vomiting either! onwards to next year when i will be moaning about it again.
peg, blimey, thats a horrible se. i hope it doesnt last too long.
Sukie, how you feeling? not what you thought about surgery, but I’m glad you wont be waiting so long, they are bl**dy quick. you sound quite okay, so well done, not that i am making light of it at all. you have been strong and supportive on here and i wish you good luck. i dont want to sound patronising either, its a another part of this when i will be through the chemo and you start the recovery of surgery,
spent all of yesterday morning waiting for district nurse, i cant quite lie in bed, being sweaty and just let them turn up. so i showered got re dressed and then lay in bed, madness! my shower takes 2 mins now with avoiding picc line and no hair.
have a daughter 16 after christmas and whilst im not interested in doing shopping etc, im trying to at least have 16 little things for her to open. went into superdrug and have done 7. so proud of that. any ittle things i could add?
wonder how next week will be as its into day 10 etc of fec and some of you really suffered.
do you sometimes feel glad that another day is over?? , i get to teatime and just feel relieved that i found something to do.and when its dark outside its closer to bedtime.
my daughter has just told me she has been talking to a young teacher who 's mum has just had wle and now told she will need chemo and rads. helen wanted to share and be supportive and they had a good chat, how grown up is that. very proud, she has been taught by the mum and wanted to know a bit more because she misses her.
sdfmeg? Em how are you? xx
I hope you are all doing okay for the weekend, and get good sleep. dont have any plans but just nice to have family around me. xxx
Hi anne, thanks for your nice comments and no I don’t think you are at all patronising-always enjoy reading your posts.
I am ok and what I’ve learned recently is to expect the unexpected. I’d rather get the surgery out the way as soon as possible and this op is much less complicated than some of the other reconstructions.
I agree with you that at the moment getting through the days is my only goal. I bought myself a memory foam mattress today as I spend so much time in bed and can’t wait to test it out later.
Your daughter sounds lovely and a real support. M and S and Boots have some great stocking filler bits and pieces (3 for 2). I chickened out of xmas shopping and got my mum to do it
Hi all hope you are all doing okay. Sukiem - I agree with your comments about Tax - I also think it’s a bit easier on the SE’s than FEC - certainly better regarding things like mouth ulcers for me etc. The worst thing I have found is the achy bone pain - even with all the painkillers it is still malingering! And also struggling with dizzy spells - however not a patch on you Peggy - must be horrible but “benign” at least is good!
Sukiem - I have still to sort out my surgery and see my surgeon next week to plan it. Previously he was quite positive I could get away with a lumpectomy if tumour shrinks down (it was originally 2.5cm on dx). However that was before they confirmed lymph node involvement. Also awaiting genetics back - if that is positive its a bi-lateral mx and probably ovaries out too. Not really much of an option either way methinks! The strattice thingy sounds wonderful!!!
Anne - what a lovely daughter you have - kind thoughtful and mature. what a wonderful idea to have 16 little pressies to open. I am sure you will get it all done in time. Made me a cry a bit when I read your post - the only thing keeping me going some days are my kids - determined to kick this blooming thing up the you know where because my kids are full of live and love and fun and I want to be here as long as I can to see them grow up. Right that’s enough feeling sorry for myself and doom and gloom!
Totally agree with you Sukiem about expecting the unexpected - recent months events have given me a new mantra “expect the worse, hope for the best!” Always been a glass half empty person- trying to be half full now!
Right off to pick up hubbieand and collect a curry! Life’s good. (oh and Anne have lost my eyebrows - but not really bothered - could be worse could have lost my mind - oh s!@ already have!) wishing all you lovely brave ladies a happy and restful weekend. X
thank you spooky your post made me tearytoo. so did you have any joy painting on pencil eyebrows? or anyone else for that matter,
been to the pub for early dinner, its a bit tatty but food etc. homemade fishcakes, and even a glass of wine, but realised i forgot me laxatives so now sipping hot water with a bit of prune juice, just to help things along,!!! sorry everyone.more info than you needed.
love to you all
xxxxxx
Amd66 - for eyebrows I highly recommend ‘Browzings’ from Benefit. You get a wax and a powder. You paint the wax on with the bevelled brush provided, then set it with the powder. I’m so impressed with it I think I’ll use it even when my brows grow back! I went to their counter in Harvey Nicks and the girl applied it for me, giving me a mirror so I could watch what she did. It’s not cheap (about £22 I think) but way worth it. I think there’s a you Tube vid with someone showing how to apply it too.
thank you pegglass, that was the one someone recommended on here somewhere, I forgot I even ordered some, but glad I know to use the wax first!!
anne x
Hi Im from october pumpkins
Hope you don’t mind me joining in with you. Your comments about different SE’s etc have made me laugh which seems to be very hard for me to do at the moment.[I am not laughing at you but with you, hope that makes sense] I have just finished fec 3 and awaiting for tax on 7th december. I am quite worried about it but you lot seem to make it less of a chore, by the sound of it anyway!
I am just starting to recover from 3rd fec now and managed to go shopping today, bought some food and goodies from tescos for Christmas, if I do manage to eat anything. Seeing onco on 24th Dec for chat and then 28th more chemo, what fun! nearly as bad as “Maranda’s mum”
Whoops, just blown my nose and going off for yet another nose bleed! I had a blood test on Frid. and hope Im not called back for anymore treatment.
Thanks for leting me yak to you.
PS Im almost a Sapphire as 1st chemo was 5th oct
Hi story so far, welcome and good to hear from you. We are all a merry bunch here. looking forward to seeing you pop in and posting.
Keeping my sense of humour is the one thing I am determined to keep hold of - so far I’ve lost my hair (loving my brazilian but not the bald head!), my balance (dizzy spells are us!), my waistline (I blame my weight gain TOTALLY on the steriods - nothing at all to do with all the cake i have recently been eating!), my blood (soooooooooo many blood tests I have lost count) and numerous days of my time (time spent waiting for scans, tests, nurses, oncologists, blood tests, consultants, surgeons etc).
I have my last tax on the same day as your first one story so far so will be sending you good vibes. I was terrified on the first tax because of all the things I had heard about allergic reactions etc - really silly as it was all fine. Much easier than the blooming FEC! Can’t quite believe Christmas is just round the corner - perhaps I should turn up for chemo in a dodgy xmas hat to get in the festive spirit.
Well wishing you a good weekend and minimal se’s. Will be with you in spirit on 7th. X
Welcome story so far and hi spookymoo/amd/peg and all the other sapphires.
Like spookymoo I have found tax a bit easier than FEC (but then I’ve only had one!). Tax is v hard on the mouth and bones though so make sure you have mouthwash and painkillers (don’t be fobbed off with paracetamol). Like spooky my balance is also all over the place but is getting better. I was advised to take L-Glutamine by a lady I met at the Haven which might be helping to avoid some s/e’s.
Spooky-your dodgy xmas hat can’t possibly upstage my bright pink cold cap (why are they pink? as if they aren’t already erm quite noticeable!).
I’m another fan of Browzings by Benefit and I’m a makeup fiend. My eyebrows are really thinning but this really does the trick
Welcome ’ story so far’, almost a Sapphire is as good as 
I actually started chemo on 31st August and they let me be a Sapphire too ! Thanks everyone.
I’ve had 4 FEC, and next for me is 3 of Tax and Carboplatin mix. I too am worrying about the first Tax… I worried about the first FEC too though, and that went okay. Worry seems to be a regular theme for me.
If all goes to plan with the next blood test (just had a weeks delay due to low neutrophils), I get my first Tax mix on 29th Nov. I’ll try to remember to let the list know how it goes. If you don’t hear from me, don’t panic… it is likely I have forgotten to write a message due to chemo-clogged brain not working right!
Sharing side effects and how we each deal with them, or not, has helped me through this horrid time.
So glad you are all around on this journey to share some smiles as we go. Even if it is a bit of an uphill plod/crawl most of the time, we will get to the top and enjoy the view, and then run down the other side and forwards
As for Christmas… it can happen without much help from me. I’m wondering how I will feel about cooking lunch.
A dodgy chrimbo hat sounds like a good idea… might make all the lovely hospital people smile.
June22
Back from the YOunger Women’s Forum in Brighton - what an amazing couple of days. Met some lovely people, learnt a lot, had a cry and a laugh, lots of tea and yummy food. Just generally fantastic. Feeling much more positive and confident and supported. What’s more, having gone there not worried about how I’d find the stamina to get through the days, it fldw by and I felt a lot more energised and better in myself.
InShock - it was great to put a face to a forumite! xx
That said, I’m not looking forward to tax 2 this week but it’s now theoretically less than a month until my final chemo.
Out of interest, those who have had tax, which painkillers are you using? What do you think is best?
Nicola x
Thanks very much for letting me join you, look forward to telling you everything, well almost, going to put my children in bed now should have done over an hour ago! but was too busy eating do-nuts.
Hi Nicola! Glad you had such a great time. I wish I’d come now as my s/e’s from Tax were not too bad and I’m actually feeling normal for the first time in ages.
I use tramadol for pain-they are pretty strong but less constipating than other codeine based painkillers. My onc also prescribed voltarol retard- an anti inflammatory. I also take L-Glutamine which was recommended by a lady I met at the Haven and which is supposedly good for muscle aches and peripheral neuropathy.