Hi Valentines
Well just spent a lovely day with my sister. We dont get to see each other often so it wad nice.
The only thing that spoiled it wsd my hair on high speed shedding mode. In a couple of hours my kitchen floor was covered. After she’ d gone i decided to wadh itvas it wss so itchy and grubby. Ive just come out of bathroom it was lovely to give it a gentle wadh but im gutted as have probably lost a third of my hair thrown down the loo judt now. I am really gutted . Oh on late shift i sooo need him right now. My kids are downstairs and i need to cook dinner do the scout run etc. and just be good old mum but inside im a mess xant stop crying.
How have you all coped i guess we dont ee just haven’t got a choice.
Sorry to share just feel so low!!
Also excuse typing on phone please xx
Fec T
Fec2, day 6.
Still feel like crap. Can’t focus properly as eyes keep watering - or closing. Burning through digestive system. Actually felt a bit nauseous this morning. Burping getting worse. Couldn’t get warm earlier today, temperature is ok though. Keep thinking of the one more Fec and three Tax ahead, and really getting p****d off thinking about rads later. Sorry to be so negative, not like me at all.
Funki, very relieved to hear you are still with us. Everyone else, hope things are getting easier for you. Linda, have I missed one of your posts? Read you have an onco appointment, but can’t find your own post about it. Good luck, hope you get a date soon.
Excuse me while I go off and have a big screaming fit.
Kath xxx
Tup, just read your post again. What a moving story. You are such an inspiration. You all are.
Lots of love and hugs xxxx
Dear, dear Jackie – many many cyber hugs. I know just how you are feeling as my Husband is out for the evening and I am just on my way in to wash my hair. I know what is going to happen. We must just be strong, because we don’t have any choice, do we? It still sucks! Louise
Lavendersun, I knew I was going to have to shave it off but kept putting it off but like you I had to wash my hair & it came away in handfuls especially around the sides , it was very upsetting & a shock when I first saw myself , plus I looked like a cancer patient where before no one would know & it’s just another realisation to what’s happening to us . I am much better once it’s all gone but as I posted earlier still get emotional on occasion
have a good cry it does help, we are all having down days , do an easy tea for the kids & get your pjs on , tomorrow is another day
huge cyber hug xx
Sorry Kath your sounding a bit bleugh too hang on the beloved day 10 will be soon upon you xx
Hi Valentines,
WELL … I have some news at last, and it wasn’t what I was expecting at all.
I had my first interview with the Onc. The long and the short of it is I am to have FEC x 6 followed by 18 cycles of Herceptin and radiotherapy. OK I sort of knew that, but wasn’t expecting FEC x 6. I was expecting FEC x 3/ T x 3. I asked why, and he said they only normally give TAX to node positive people. I was kind of relieved and felt happy. (Bizarre)
THEN he said he would make me an appointment to have my PORTACATH fitted!! I was totally gobsmacked and thrown off balance. I have been struggling to decide whether or not to have a line in from the start, and which sort, or wait to see what happens with my veins. The decision has been taken out of my hands - my hospital always fits Portacaths for those needing Chemo and Herceptin because of the number of infusions involved over 12 months. They give PICC lines to those that need them who are on chemo only.
THEN he said I am eligible for a trial - the Aphinity Trial for the targeted biological drug called Perjeta (Pertuzumab) which is given at the same time as Herceptin for 18 cycles. It has been approved for use in America and Europe for metatistic breast cancer, but this trial is for primary breast cancer for HER2 positive tumours with no node involvement.
hey ho xxxxxxxxxxx
Evening Valentines. Day 12 FEC cycle 2. Have just logged in after a couple of days absence. Been working mainly from home but did go into the office this morning. Chaired our senior management team meeting which was fine. Team pleased to see me. Saw a couple of other people I know who ignored me. I was wearing a scarf which does rather scream CANCER!!! I don’t even like wearing scarves and would rather go au naterel (as Alison put it) but I don’t think the world is ready for that.
Side effects have receded a bit although the chemo ‘fog’ never lifts completely. I have a sore left arm where the cannula was inserted and along the vein but there is no swelling or redness. Should I be worried? Still eating (and burping) for England. Emotionally I’m generally ok I think. My OH might not agree!
Funki - you do seem to have had an awful time of it. I do hope things worked out today.
Alison - your puppy is gorgeous. Quite jealous. I would have another dog in a flash.
Tup - I also found your story quite moving.
Jackie, Gill and others - the hair thing isn’t easy (my current silver lining is money saved on conditioner!) but it will get easier I’m sure. And it is temporary. I’ve been told that hair can grow back quite differently so in idle moments I am fantasising about curly red hair!
I do so admire those of you with young children who are carrying on doing the usual mum stuff. My three are all adults now. Daughter back from uni in a couple of weeks - can’t wait to see her. I have been sending her pictures of me as my hair has got shorter/non-existent so she won’t get a shock when she sees me in the flesh.
On the subject of flowers - I love them and I had loads when I came out of hospital. My neighbour brings me the occasional bunch of daffs or I just treat myself now. I had a lot of cards too but have thrown them away now - I don’t really want any cancer ‘souvenirs’.
My friends and family have been absolutely wonderful. Although my youngest brother (a testicular cancer survivor who thinks he’s a bit of a wit) does have a habit of texting me the question ‘are you still alive?’ from time to time. I have posted before about work colleagues - some people have been surprising and some have been a big disappointment but people react in different ways and sometimes they don’t know what to do or say and sometimes the reminder that we are all mortal is a bit much for them. But I just focus now on those people who have been brilliant.
Angie xx
Linda I have often wondered why some of us are FEC, while others are FEC-T so I’m glad that you’ve answered that for me. I had suspected it would be something like that but wasn’t sure. Have you got a start date? I got mine on the same day.
I hope everyone is doing well & coping with their SEs. My acid pee seems to be easing (slightly), so let’s hope it’s the antibiotics kicking in & my neutrophils are rising. I just want it all to keep to the time schedule as I just want this chemo journey done & dusted. Karen you are exactly 1 round ahead of me!
All the very best Ladies
Dyane
FEC1/6, day 14, Antrim Area Hospital
Linda - pleased today went well for you, like you m havint a port fitted next week simply because i have poor veins it seems a bit far fetched as im just having 4 cycles and nothing compared to the extras youll be having.
Jackie - my thoughts with you this evening without your oh and having to put on a brave face.
a big, big hug to all especially those who are not feeling so good xx
Hi Ladies
Day 1 cycle 2 Fec
grrrrrrr… happened again… not posted … cba to re-type ladies but Im doing ok so far… 4 hours at the hospital today… came home with 5 booster injections yay!!!.. got a feeling I will be on the sofa in the early hours with my blanket…woozy head at the moment… mouth has gone a lot worse…lets see what tomorrow brings…love and hugs to everyone xxx
Oh Tuppence… what a lovely post… i have just come back from my 2nd lot of chemo and it was lovely to read…made me smile
Kath… have you finished your screaming fit yet? come back and rant and rave on here hun… huge mega hugs for you
Everyone else who have sent me lovely messages for today… I thank you from the bottom of my heart that out there i have a band of sisters who know exactly how Im feeling… lots of love to you all xxx
Hi All
Second day of round 3. Enjoyed some rays on the patio today, wrapped up like an invalid but still very pleasant.
Effects are starting to kick in and, Kath, I can definitely identify with you with the burning issue. I suffer from relentless acid reflux, stomach cramps and constant burning toilet trips. I’m even thinking of asking for an endoscopy when I’ve finished with this - after all what’s another scan? I also had to have a picture taken of my arm yesterday as the docetaxel has, rather painfully, burnt out a vein and surrounding tissue and left a huge brown mark. I’m just a bit concerned that I will be left with some permanent reminders…
Dyane - I’m glad your burning issues are starting to subside. I’ve also gone through periods of sensitivity and even disabled my facebook account when only one person commented on a ‘sad’ status. I’ve since reactivated it , though!
Angie - Just mention your sore arm when you next meet your oncologist - it’s common, though, to experience some tenderness at the injection site.
Lola - I’ve heard good things about this new drug so it could be worth enrolling on this trial.
I do feel sorry for all of you losing your hair. Having had almost complete alopecia all my life, the few strands I had remaining did not upset me when they fell out. I have also had a hair piece for many years which was attached to my meagre hair follicules ( a bit like hair extensions) and is now glued onto my head with wig tape!
Tup - Hope your side effects continue to ease. I wrote all mine down in detail. The oncologist I saw ( not my usual one) did not seem particularly interested and just said I should expect some unpleasant effects because the treatment is so strong - helpful, I thought!
Alison - Your puppy is totally gorgeous. My childrens’ gerbils aren’t quite such good companions! I’m thinking of getting another pet but, sadly, my husband is not so keen.
Yankee - I also thought you were cooking for Brian Blessed and had to reread your paragraph carefully. Not looking good for next week when I’m supposed to proof read reports from work next week!
Apologies for missing anyone out - feeling rather out of it now. Have a relaxing evening everyone.
Diane xx
FEC1 day6
Thank you Tuppence for sharing your past experience - must be strange comparing such extremes. Sorry you’re having the same sort of SE’s as me. From what others are saying it will get better.
I’ve spent today gazing out at all the critters enjoying the spring weather in my garden. I’ve been visited by a very tame robin recently so I keep popping out to drop dried mealworms on the decking to try to encourage him. Got the camera at the ready.
Thanks Angie for letting us know it gets better. Have had a weepy day today thinking about 5 more of the same but am encouraged by all your stories. I will make notes to let docs know in case the next round can be improved.
Linda , you have had a busy day! Great news about the portacath - lovely to have someone make the decision for you. How do you feel about the trial? I looked it up and it sounds like it’s another good weapon in the armoury against the return if the BC. As it’s being given as well as and not instead of a tried and tested one it sounds very positive.
Dyane , glad your pee seems to be improving hope it continues to do so. I was interested to hear about the FEC/TAX thing too.
Sorry you’re feeling so yuk Kath. Hope your scream helped. OH and I had a good weep earlier and I feel bait better now.
How frustrating when you loose your posting isn’t it Sandra. I got so sick of it I’ve started to write in ‘note’ first then tap, copy and paste to the thread. This iPad learning curve thing is a steep one!
Hope you all have a peaceful night.
God bless,
Mandy xx
FEC1 day19 c/c
Hi Valentines,lots going on with you all at different stages,it all seems so complicated for some of you on different drugs with assorted se’s.
Have started to shed some hair now,was really scared to wash hair in shower this morning,worried I might see the whole lot in the plughole!!!Washed and conditioned very gently,quickly wrapped towel round head,as if that would stop it falling out.LOL went into garden to gently rub with towel then shook towel and hair,quite a lot was coming out.Brushed it gently outside whilst talking to the window cleaner.Daughter said birds would be glad of it for their nests. Gently blow dried it and it looked fine.Was sore on top but feels ok now.Trying not to mess it about although if it wants,it will come out.Going to carry on as spoken to others whose hair just went thin.Got bloods tomorrow then No.2 Fri.
Regarding flowers,my friends are still bringing them and they really cheer me up,friends are constantly phoning and texting and visiting,I truly feel blessed to have such lovely friends and family supporting me.Thank goodness I am not in my sisters shoes,she is having to live in Perth WA,her husbands idea,she doesnt want to be there and her eldest girl age15 doesnt want to stay there either,if this BC had happened to her she would have no family and friends around her.There is no place like home as Dorothy said in her red slippers.
Tup found your little snippet of history very interesting.
Those of you feeling down and teary,Group Hug hope all feeling better tomorrow Love Chris xxxxx
Dont know if anyone else is keeping a daily diary like me,I just put in the chemo day and date and how I feel and any se’s.Thought it would help planning days out if each cycle tends to repeat,
Love Chris xxx
Fec 2 Day 1
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR… can you tell I lost it all again!!!..
back to the old fashioned way of cut and paste
will repost later ladies cba to do it all again xx
Chris I’ve kept a diary since the day I was dx. I find it useful as I know exactly when any SEs started etc. I also found it very helpful in the early days when the worry was all-consuming. Having somewhere that I could vent & be totally honest without having to hold back helped me to get my head around things.
Like most of you I dread touching my hair as I’m afraid it’ll all fall out. I know it’s inevitable but my husband comes back from work on Saturday (oil rigs) & I’d like to have my hair then.
Dyane
FEC 1/6, day 15, Antrim Area Hospital
Day 15 Fec-t round 2
morning all x hope everyone suffering with SE’s are a bit brighter today , I’m on my " good week " but to be honest not feeling as good as I did on round 1, this has put me on a downer thinking will I get a bit weaker after every cycle , trying to buck myself up thinking Spring is almost here & the sunshine really does help , can’t put my finger on how I’m feeling I’m just out of sorts & a bit peed off not having much energy .
Thanks Angie for mentioning the sore arm , I’ve been suffering for over a week with a tender arm & stupidly thought it was because I had started carrying my handbag on that arm instead of my bad arm !! But your theory makes much more sense !!
Also anyone having split sides of mouth I can totally recommend Blistex relief cream , Alison previously mentioned this & I’ve tried it & it’s really helped, thanks Alison x
Those of us who are going on to T for round 4 ( sorry know this is a way off ) but I’ve read that black nail varnish helps against losing nails
Gremlins only posted half … To continue about anyone using black or dark nail varnish my top tip is to use a base coat underneath as prolonged use of dark varnish make your nails go yellow , been told to eat raw jelly , much to my daughters delight ! I know it’s a way off but I’m starting now to build up the strength …Also think that subconsciously I’m pushing the days trying to get this over & done with lol !
Did post a bit more but hey ho
Take care eeveryone
karen x