Hi Lisalouw
You sound very much like me I have IDC 4.8 cm tumour and going to have TC chemo and cold cap.apparently cold cap is only 20% effective with this chemo but was told this 14 years ago when I had AC chemo but I did keep my hair.
I have to have chemo first tho then surgery. My bone and CT scan was clear still waiting for snb results had the op Tuesday. Also triple neg.
Rough road ahead I know but we will surface the other side before we know it
Wendy x x
‘Of all the timelines in all the Twitterverse, he walks into mine…’
Today’s post on chemonights.blogspot.co.uk/
Wendy I’m so glad your scans were clear , that’s really good news , I figure what you got to lose with the cold cap , and everyone’s different , I’m at the can’t sleep point , ahhh drives me crazy , and very soon I’ll have a little visitor in bed who wiggles like you don’t believe it , is this your second time round, you mentioned chemo 14 yrs ago , it’s so scary isn’t it , hope your tucked up in land of nod at this time Lisa xxx
I continue to be completely manic and hyper: it’s very, very weird, and I’m starting to think it is caused by the Domperidone.
Last night I was up writing until 4.30 am, tonight it’s 2am, and I’m finally getting t o the point where I think I might be able to sleep if I go back to bed now.
Nausea continues, although under control; hair all still attached (day 13, I did the cold cap); no other side effects so far except massively magnified sense of smell… Skin very dry, fingertips a bit numb (or am I imagining that?)
The OH and I had a lovely, lazy Christmassy day today, and revisited our youth watching the TOTP Christmas Special. i had forgotten about the Barron Knights - I LOVED them when I was a kid.
Tomorrow we are going to see ‘The Hobbit’ -another childhood favourite. Lifeslowly starting to be a bit more normal - apart from the hyperactivity - and hopefully this will continue until dose 2 on Jan 2nd. They say the next week of the cycle, the third week, is the good week.
I so hope that is going to turn out t obe the case.
Gotta go to bed now - think I may have finally tired myself out.
Morning Girls,
Popped in to check on you yesterday but just lurked. Thanks to Wendy, Maire, Cybele and anyone else who sent me good vibes. I felt like I had ruined Xmas cos no-one could come near me or hubby due to colds etc so aged parents (who both have cancer) banned and massive Irish family partying without hubby. Just about remembered now that it was actually cancer that p*ssed on the party not me.
Anyway - well done Shaz on chemo no 1. Start ticking them off. Boiled water sounds like nonsense to me, unless you get your supplies from a ditch.
Maire - I love your stream of conciousness catastrophising. It goes on in my head all the time too.
Lisa and Wendy - we can start a TN club.
Cold Cap - worked for me on FEC-T. Hair thinned, few baldy bits. Wide head band is all you need. Many chemo nurses will tell you it won’t work cos they can’t be bothered with it and the extra time. (news flash - not all nurses are angels). Wash hair once a week with simple products, don’t use anything else, don’t dry etc. Don’t wash it 24 hours after chemo. Wet hair and apply conditioner before cold cap, make sure it is tight all over, make sure it stays on proper amount of time. Make sure you have woolly hat to wear to get out of chemo unit cos you will be freezing and will look ridiculous. The fact is it is up to you - do it if you want and don’t if you don’t. Just don’t let a lazy nurse talk you out of it. Warning - not being bald will lead to people saying things like - “you look well” because you don’t look like what they think someone with cancer should look like when you actually feel like sh*t. This will lead to you wanting to kill them. Hide the knives. At the end of that rant I can say that I am glad I did it cos I got proper hair so much more quickly at the end. (takes breath)
Did you miss me???
Oh - Cybele - loving the blog but it is OK to take a break and go to sleep. Do a mini-post sometimes? Just a pic or a link? Or get someone eccentric (do you know anyone like that?) to write a guest spot?
xxx
Oh, Cressida, that made me laugh - the bit about wanting to kill people. Exactly. I have this mantra I have to repeat to myself when people say unfortunate things. ‘They mean well. THEY MEAN WELL. Don’t say anything you may regret later. THEY ARE TRYING TO HELP’
One very nice woman on twitter reduced me to tears last week when she tweeted at me how her 74 year old neighbour had romped through chemo, never missing a day’s work as a theatre guide (whatever that is - what the h*** IS a theatre guide - some kind of voluntary work? ), and putting it down to drinking a large glass of red wine every day, or some such s***. I wish I could drink a glass of red wine every day, in fact half a bottle would be nice, to take the edge off things, but I can’t touch it at the moment because it smells like vinegar.
This was at the point before we got the nausea more or less under control, and it made me feel completely inadequate, but I KNOW she didn’t mean to…
Cancer isn’t a f***** competition. I’m not working at the moment, but I have NO IDEA how people manage to keep working through all this.
Having written that, I’ve just realised that since the day before chemo started on Dec 11th I HAVE been working, long hours every day, on the blog, and in fact that work, albeit not paid work, is what’s keeping me sane.
Hah. OK, maybe I do understand how people can keep working through this, after all.
My level of self-unawareness continues to know no bounds, apparently.
God, I’m slow…
Hi Caroline
i thought you mightvhaveca giggle reading this thread…
breastcancercare.org.uk/community/forums/living-breast-cancer/stupid-things-non-cancer-people-say
Hello again Crackers,
It’s great to hear everyone’s news. Gives me a good laugh. It’s some journey.
I no longer look like Jo Brand but have morphed into the guy from The Prodigy-you know the Firestarter one. Same hair style: tuft at top and over ears.
Have been puzzling over odd blister behind toe and at base of ring finger. Discovered this is a side effect of chemo and they usually stop chemo till it resolves. They are going to just love me. I’ve already had chemo delayed due to white blood count and am due to move onto new stuff. I am officially a very bad patient. Still got annoying sore throat. Cressida, You warned me about it. It is def. chemo throat.
Lisalou-Think I’m moving onto the same chemo as you, Taxotere and the C one. That’s if I’m allowed. Fec didn’t agree with me.
Cher is spending most of her time on the wig stand, sulking. I’ve had her out and about a few times but it’s much easier to just pull on a hat and scarf. In a way we’re lucky we’re having this in the winter. Not only because hats are easy to get away with but also because it’s mostly dark and people can’t see our poor hair or the glint of anger in our eyes as we experience our evil thoughts!
Hi ladies, don’t know why having a tearful and paranoid day but sounds like I’m not on my own which is reassuring. I can’t remember when the worst days are meant to be can anyone help? And is infectin risk at its greatest from day 7 god I think I will just hibernate with gels, wipes ,creams,tissues, masks and anything else I feel like a nutter. I can’t help worrying about my family very upsetting for them but you are right it’s the sh…t cancer and all that does go with it and we all deal with things differenhly but they are wonderful . My daughter took me to cashpoint and I was horrified how dirty cash point machine was and when I gothome
Having head shaved New Year’s Eve defo full dose of diazepam that day and hats, scarves etc to the ready! And of course tissues.
Sorry if I sometimes repeat myself again chemo mush brain!
we will all be with each other not just for Christmas but all of the time. You are all amazing, you help me and so many others and you are right we are bloody working each and every day dealing with this unwelcome demon in our bodies plus whatever else we can do each day so well done us.
might have another diazepam now as not cried for about hour and half but really tired.
loads of love and sorry this is to all of you also seemed to have lost typing skills.
Cathie xxxx
Hi Lisalouw, I’m having my first chemo January 4th and triple negative! I live with my daughter who is 19,she isn’t coping too well at the moment. lm nervous and worried there seems so much involved, so much to remember and so many things to buy. I will be trying the cold cap , mu oncologist didn’t ask he just said youll be having tje cold cap explained all about it and said I could stop if I wanted or not bother at all. Thought I was going to have to fight for it. Well good luck for the 4th , maybe see you on the January thread. Have a lovely Christmas. X
Hi i am having my first Taxol & avastin with cold cap on the 27th , trying not to think about it until after xmas, keeps popping up in my head though. Took my 11 year old to see The Hobbit the other day was ok , wait to see the rest of the story. I too am TN this is my 2nd time round , had FEC x 6 in 2008 .
Hope you all have a restful xmas, then may the battle commence !!
Sarah66
Good luck sarah66 So unfair to get it once, but twice ! Was you tn 1st time?
Lets hope with have a good peaceful Christmas but like you its there ALL the time.
love and hugs. xxxxxx
Pat
I HATE my husband today - he said he thinks i’m going to be really ‘precious’ when i start chemo - and this is from someone who has never had anything worse than a large boil on his bum. He is worryingly already showing signs of compassion fatigue (he is a lovely man don’t get me wrong but they can only take so much can’t they?). I’m also really in a dither about whether or not to have the cold cap. My Onc said there’s a 2% chance of a few cancer cells lurking behind in the scalp and not being killed off. But neither do I really want to lose all my hair if I can avoid it…please could someone make my mind up for me.
One other thing is just how crappy does one feel after the first course of chemo if having FEC? I’m having my first round on new years eve and have our bezzie mates coming over in the evening just for a quiet evening of supper and banangrams but is this mad and will i feel horrendous/sick/shattered? Or are we OK to press ahead?
Happy Christmas one and all xxxxxxxxxxxxx
Hi Alpal,
I have put for you below the link to BCC’s publication regarding chemo, I hope you find it helpful. Also I have put you the link to the area of this website for our ‘Headstrong’ service which I also hope helps.
www2.breastcancercare.org.uk/publications/treatment-side-effects/chemotherapy-breast-cancer-bcc17
Take care,
Jo, Facilitator
Hi Alpal
I had my first FEC on the 6th. I was fine for about 48 hours, albeit a bit wired and unable to sleep but i think everyone is different.
I did try the cold cap, but had no idea about the 2% and to be honest wouldnt want to take my chances given theyve not proven to be in my favour so far… so if you find out anything more on that, Id be interested to know.
I think if its what you fancy doing for new year then do it! as long as your friends are aware that you may have to retire or not as the case may be!
Hope your husband doesnt annoy you too much!! Just tell him you’re perfectly entitled to be precious given the circumstances…end of! thats what i told mine!
xx
Alpal - just saw your post and I am too knackered to respond properly but the day you have your very first chemo you won’t feel instantly ill. You might feel knackered from all the stress tho. If they are friends they will understand. You might welcome the distraction. I like to have some sort of treat after chemo. Tell them you are exhausted and they have to take that into account. As for hubby - maybe you could arrange to see your BCN together so he can understand the situation for you better? He might be scared and just not know what to do. You are going to need his support tho, so he can’t just carry on sticking his head in the sand. As for the cold cap - breast cancer rarely spreads directly to the scalp! I have never heard that concern before. Why not try it the first time and decide whether to carry on after that? Deep breaths Hon, you can do this. xxx
Hi Alpal - having just read Cressida’s reply - her advice is probably much better than mine on the husband front!
Thank goodness you’re out there Cressida…xxxx
'Don’t worry about a thing, ‘cause every little thing gonna be all right…’
Today’s post on chemonights.blogspot.co.uk/
Hi All
It is 1o days since I had my first chemo (FEC) and have had my hair cut really short and it feels absolutely fine none of it is coming out, will I definitely lose it? does anyone know that if you dont use the cold cap you will definitely lose your hair when you have FEC?