Sleep well tonight ladies - tomorrow is a new year!
Hope the side effects arent too bad…
lots of love and thank you
Mx
Hello everyone just to wish you all a happy and healthy 2013. I am thinking of you all and send lots of love and hugs
Cathie xx
Just checking in from the Jan bunch to wish all you brave ladies a happy healthy 2013!
I have my first oncology appt on Jan 2, and am currently in La-la land, I mean Canada, the land of snow and ice … went for a geat walk today as Chinook raised the temp to almost freezing! 
Happy New Year, and God bless us, every one!
hi first FEC 1 out of the way 5 more to go, had my first nights sleep in ages, went to bed at 10.40 didnt wake untll 9 this morning, cant belive it thought i was going to start all side effects straigt away, but woke up feeling ok. got district nurse coming to give me 1 of 4 injections today, cant remember what they are for though, but feeling good, (at moment) .
does anyone on here live anywhere near Bedford just wondering where we all live, would love to meet up with you all xx
take care and happy new year to you all
lolly
Hi Ladies…
LOLLY123: Im glad your first fec went ok, i think we all thought it was going to be worse than it really is/was i didn’t sleep to well after my first fec so its good you had a good nights sleep. My SE were ok-is but i did feel very sick (wasn’t sick) and tired. I hope your will be ok.
I am from Reading.
HAPPY NEW YEAR
Good luck with all all apointments and chemos have a good day.
Sharon Xx
Hi Crackers-Well we’ve all made it through the first chemo and into 2013. I’ve not been on for a while because the TC was bloody awful. Sorry folks.
I’m on day 6 now (if day one is the day you get chemo-my husband disagrees with me on this and has me one day behind but by God I’m calling it day 6!). Starting to feel a wee bit better so feel I can finally type. Just to warn you-be prepared for horrendous heartburn and get in your supplies. I was given the omnipotent drug (omniprezole?) along with 3 days steroids and some other anti nauseau drug (metoclopramide). The heartburn really kicked in on night 3 and I couldn’t sleep. Eventually downed some Gaviscon and tried to sleep sitting up. Eventually I dosed off. One of the mistakes I made was not to take as many metoclopramide as I should’ve as one of the nurses said it was for nausea. Well I didn’t have any nauseau this time (a bonus on the TC regime) but when I was up to reading the instructions I noticed it was to reduce stomach acid. So don’t do as I did. Get yourselves dosed up.
Getting through hogmany was hard and I finally succumbed to a wee greet on the couch in front of the weans. Not good. I swore I’d never cry in front of my kids. I just felt so fed up and sorry for myself and didn’t think I’d make it through to the bells but thought I’d toss and turn if I went to bed. I think the pressure to be upbeat at this time of year just got to me. Anyway I had a snooze and felt better and saw in the bells with a smoothie and bit of cake. So I made it! Turns out chemo doesn’t stop the old periods right away (too much information?) and a rather desperate wee period arrived today. Hence the tears? Well that’s my excuse anyway.
Anyway, the sun is shining today after many many days of driech Scottish rain, so I’m putting on the hiking boots and going for a shuffle in the countryside before my Ne’er day meal.
Hope my post hasn’t worried anyone-think the reaction has a lot to do with dose level and my C drug was upped to 1000mgs so I’m going to see breast nurse with a wobbly lip next time to see if they’ll drop it a bit.
I’ve got soul but I’m not a soldier!
Morning all,
Today is my cancerversary. On New Years Day 2012 I became aware of a large hard mass sticking it’s head out the side of my left boob. 2011 had already been the year from hell (or so I thought) with nothing but death and loss, spent mostly in hospitals or at funerals. Other stuff that I can’t even think about too. So, I convinced myself that no-one can be that unlucky and I would be one of the 9/10. I was at the GP surgery by 9.10 am on the first working day and she pulled a funny face but didn’t bother to send the referal so it was over 3 weeks later (and a bit of shouting) that I spent the day in the breast clinic. “it’s a cyst - I’ll drain it now”…“oh, thats not a cyst”…off to ultrasound “It’s an infected abcess, I’ll drain it now”…“oh, thats not right”…back to the first doctor…“it’s a bruise”…“not everyone remembers getting them”. A bruise? Really? I now know he meant necrotic tissue but thought I was too stupid to understand that. It was him that was stupid. “could it be hormal?”…“very unlikely, it’s too big”. So he gave me antiboitics. Are they good for bruises? We went to the Isle of Wight for some reason and the BCN phoned me whislt I was in a pub (trying to forget about it) to tell me it was all clear and cancelling my follow up appiontment.
To cut a long story short a little voice kept reminding me of how stupid they all were so I went back and I shouted. Another doc put his head on one side and spoke slowly “well, it hasn’t gone away, but that’s what you get with these hormonal things”. Then I REALLY SHOUTED. He literally ran away. The nurse/chaperone giggled nervously. The consultant arrived and took one look and said “that does not look good”…off to ultrasound…he wouldn’t even speak…took 3 biopsies…found myself in private changing room with consultant BCN…then back with consultant who said the c word.
After that it has not stopped. Pioson, cut and burn do not seem to have made it go away.
I am sorry to post so indulgently on New Year’s Day, but I really wanted to wish you all a Healthy New Year and to thank you for letting me join you despite being in a slightly different postion to most of you. I have no evidence of secondaries so I don’t feel I can crash their threads but, everyone seems to agree that the lack of evidence, if it is true, is a miracle. So off to more chemo I go.
Love to you all, keep on keeping on, Cress, xxx
Cressida-you don’t know it but I so admire you. How you have endured this battle I just don’t know. When I’m feeling low it dawns on me that you’re going through this again!!!
Your posts keep me going.
Hi Marie
had my first TC yesterday feel ok so far. When did you start feeling poorly? I know we are different and am expecting to get get se about day 4 when steroids stop.
Wendy
Wendy. Think I began to feel grim on day 2 and probably worst on days 3 and 4. Starting to feel better today. Will be better prepared next time.
Getting sore ears today but no temp.
hi ladies, happy new yr and hope you had a decent Xmas , as much as you can dealing with all this , I had a reprieve with my chemo being delayed as had cold for my first session of TC , the last 2 wks has sped by and now the nerves are building up again, due for my bloods tom and then chemo on thurs 4th, I’m also trying the cold cap , does anyone know if they took there own conditioner to use whilst the cap is in or do the nurses supply it on the day, I’m taking mine anyway my head doesn’t like any strange products , I’m hoping as you mentioned the fear is worse than the actual treatment , I’m going on my own as my parents will be having my son who’s taken to not letting me out of his sight since I had my op so I’ll be stressed before I’ll get there coz he will be sobbing before I leave , im petrified of having an allergic reaction and no one noticing , i keep trying to keep up with everyone but it’s 10pm when I get to read posts and by that time sometimes I can’t fit cancer in my head otherwise I’m up all night grrr, I’m moving in with my mum for a few days on thurs for help with my little boy , Marie I did think you looked gorgeous in Cher and glad you managed to get a drink , is it ok to drink whilst on chemo , I do like a glass of wine to de stress , mind you I’ve read some if you think it tastes of vinegar , I do love vinegar though so that won’t stop me , sleep well ladies hope your ses not too bad tonight xxxx
Courage, my Sisters in Chemo - and if you have any to spare, could you please send me some? I didn’t have much to begin with, Tesco’s is shut, and I’ve completely run out.
DREADING FEC 2 tomorrow morning more than I can possibly say…
love and huge hugs to you all… xxx
‘Twas the Night before Chemo’ -
today’s post on chemonights.blogspot.co.uk/
Cress -just read your post- Very Big Hug - that is just AWFUL. Thank goodness you had the gumption to tell those idiots to take another look. Am so sorry you 've had not one, but two such horrible, horrible years. xxxxxxI won’t say that this new year has to be a better one for you, because I know from personal experience that doesn’t necessarily work - but I truly HOPE it will be . Boy, do you deserve a break…
I had been wondering about how come your cancer had come back so very soon - I had assumed, foolishly, that such a thing was unlikely. If you’re up to sharing it, it would be helpful to know what your original DX, surgery and the treatment was, and how it has come back. I guess despite all the doctors’ guff about favourable statistics, this could happen to any of us, and soon. it would be good to have an idea of what could happen, and how.
I have a deep inner conviction, that I have not shared with my doctors or anyone else, that this little f***er is going to come back and get me again. They say in my case there’s a 91% chance if disease-free survival in 5 years time, but that means 9 women out of 100 will get the cancer back during the next five years. I keep thinki g I only has a 4% chance of getting it in the first place - so I was that 1 woman in 25; why shouldn’t I also be the 1 woman in ten?
And there’s a doomy thought to take to FEC 2 with me this morning…sorry. Just not in the mood for chemo this morning… as if I had any choice in the matter.
Onwards and upwards, and off to the Poison chamber to have my head frozen…
Good Luck Cybele today - hope its not too bad.
Cress - your post was amazing - you are such a strong woman…and this is just so sh*t!
I had my second FEC and have been feeling pretty ropey…totally different to before and my back seems to be consumed in a spasm…it has been so painful - i cant find any painkillers that even go close to relieving it…back to the GP’s today.
I’m sure it is all tension (at least I hope) but it has been just so consuming and i have allowed it to become so, which has annoyed me even more…
My hair is very thin now, not a lot left so think am gonna have a shave today! and give up with the cold cap…i must have been one of the unlucky ones!
Weather not so great in Yorkshire today… wet and miserable…
So where do we get the positivity from when feeling so rubbish???
xx
Cybele-I had to respond to your post as I can totally relate to those deep inner convictions you have.
I feel the same and I think this diagnosis has made me reevaluate everything and think that anything could happen in a way I never had to face up to before.I find it hard feeling so vulnerable but suspect most of us feel the same.
Good luck today. I love your blog by the way-it’s very funny and very true (especially as I know some of the main players!). I finished chemo on Friday and the time has flown xx
Lisalou-I didn’t really feel like alcohol for most of the 3 weeks between treatment but I had a week off and knew my blood counts were healthy so treated myself on Christmas day. I reckon I managed to down a bottle of fizz and one additional red over the course of the day. I felt fine. A bit wozzy with first glass (good wozzy not bad chemo woozy) and thereafter I took to it like the proverbial duck. No hangover next day-paced myself and had lots of nice food. It was soooo good to step off the chemo train for a week.
Back to not feeling like it now. But even if I did feel like a glass I would avoid it due to the ravages of chemo. Probably won’t have another drink unless I get another reprieve. However there is a lovely big glass of the red stuff sitting at the end of the line along with a myriad of treats I’m planning for myself. Some of the treats are quite minor but I won’t be wasting a minute of my time when chemo is over. Kind of ignoring that I’ll have herceptin and tamoxifen to contend with for a year or so!
Anyway-once again good luck for those with rounds 1 and 2 this week. We’ve got a good wee band of feisty endurers on here.
Off to read Cybele’s blog-great fun by the way!
Morning Crackers,
Hubby has gone back to work for the first time since before Xmas so I am back by myself with only cancer for company and he’s an annoying little sod. I think I am correct in my assumption that anything as annoying as cancer is male.
Warning the following is not bright, postive or sunny. It is true.
Cybele - my cancer has not come back so much as refused to go away. When they finally diagnosed me they persuaded me to have chemo first so they could monitor the effectiveness of the treatment. This made sense - if it was not working then it could be changed. I think this is more important for triple negative as chemo is all they have. There is no actual evidence in terms of survival that chemo before or after is any different. Unfortunalty the stupidness did not stop at the B Clinic doors, because they failed to accurately measure the size of my lump. I was not offered an MRI and did not know I should have been shouting for one cos I have never had cancer before and was busy having a nervous breakdown. You don’t need an MRI to measure if ultrasound is able to do so but they didn’t tell me that mine was too big for the ultrasound. I heard them say “3-4cm” but, apparently they said “3 or more cm”. (Anyone got 3&4pence for a dance?) They used a ruler on my skin. “It’s about 12cm, don’t worry that won’t all be cancer”. Well, tha’ts alright then…
To cut another long story short I discovered the fact after 3xFEC and started shouting again, demanding to be referred to another hosp, crying etc. In the MRI it turned out to be 10cm and showing every sign of not caring about FEC. The Onc looked worried and prescribed 6xTax. How we laughed, how could they monitor the effectiveness if they had not measured? The Onc promised that ladies with larger lumps would get MRIs in future (woohoo - I have a legacy). The MRI after 3 Tax showed that, it had not got more than 10cm but had grown fat. It was expanding sideways. I was sent to get rid of the evil thing. Complete mastectomy, little hope of recon, then sent to be burnt to a crisp. I finished super rads beggining Nov and it is literally just the last couple of days that the burning and peeling has stopped.
My original results showed I am TN, invasive, grade 3 with clear nodes. Clear nodes is good but the whole thing is an equation of typexnodesxsizexspreadxresponse to treatment and no-one knows exactly how the equation works. Size and chemo resistance is clearly my problem. I have not had any scans for secondaries since Feb last year and I have not felt the need to shout as I am having secondary chemo anyway and I prefer to stick my head in the sand.
I was strongly encouraged to have further chemo, despite there being no actual evidence of effectiveness (trials are underway). The fact is that any nasties that are too small to see will not have cared about the FEC-T either. My hubbie does not want me to die so I agreed to try it under protest. I REALLY did not want to. There is no way to moniter the effectiveness of GemCarbo now as the lump is gone. So I will never know if I have agreed to be piontlessly piosoned. The only thing I do know is that, if it does come back, I will always think I should have done it.
I was hesitant to put all this on here as I know how easy it is to get paraniod. Most TN responds really well to chemo and most cancers shrink or even disappear under the assault of FEC-T. The only lesson I have for you is to make sure the response you are having is being monitered. Ultrasound will do it in most cases but if you have a large lump you might want an MRI. For those of you who had surgery first - at least it is gone and the chemo is focusing on the “mop up” of any stray cells rather than the main cancer. Chemo really does work in the vast majority of cases.
Well, that has cheered us all up, will try to write another post to the rest of you as I have now read through.
Keep on keeping on, xxx
morning all, am currently in 6 East at Charing Cross, having the first dose of chemo pumped in. 4 syringes of Epirubicin. already had the Fosapprepitant and steroids. We are motoring!
hi cybele,
was thinkg about you today, hope all goes well, and the cold caps works for you,
sending WARM hugs
lolly
x
Hi again girls, if you have not all rushed to you hosp to shout for MRI’s
Good luck to everyone having chemo this week. I will be there Thursday, so long as my cold does not stop it.
Maire - thanks for your kind words, you really are in side effect city. I had terrible indegestion too - Omiprazole is great but if they have you on 20mg you can actually double it. (usual disclaimer - Cress is not a doctor - ask a real one first) I found that eating small snacks regularly rather than larger meals helped, as did cutting out spicy or greasy food, caffeine, alcohol and fizzy drinks. I tried never to eat after 6.30pm. You can use things like Gaviscon but seperate it from the Omiprazole by a couple of hours at least. I also raised the head of the bed by a few inches using wooden blocks. Gravity will then help the acid stay where is should. SORE EARS??? There really is no justice.
Lisalou - my unit expected me to bring conditioner and they expected it to be Simple. There is no actual proper evidence about the best conditioner but the fewer chemicals it contains the better. A nurse should sit with you for the first minutes of Tax to see if you react. They are very calm about any reactions and just get on with sorting it out. There was no sense of panic about me as I went red and my throat closed up… It is very common but very easly sorted. As for alcohol - I do not touch it until I have finished steriods and anti-sickness pills. I think after that it is more about whether you can stomach it. Have a small glass and sip.
Mandy - I can’t say this enough. You do not need to be positive. Positivity does not cure cancer. It’s just another stick to beat ourselves with when we cannot do it. Have a look at some of the tyranny of positivity stuff on the internet. It’s the one thing worth googling. Some of it is hilarious. When you are really fed up go on you tube and watch the daily mail song. I would link but I have to go to the hosp and get my bloods done to see if my cold has made me unfit for chemo. Can’t help secretly hoping it has.
I am really long winded today. Will try to be concise next time, xxx