Afternoon all, and a very warm welcome to all the newbies.
I’m feeling fine, apart from the constant nausea/sleeplessness, but can feel the anxiety starting to build up again with FEC 2 looming up on Wednesday. Having used the cold cap (and having spent a lot of the time while it was on pressing it as close to my scalp as poss after the warnings about it having to fit tightly), I haven’t lost any hair at all yet: I have, as instructed, only been washing it once a week in mild shampoo, and only combing it very infequently.
Of course this may all change after FEC 2, but am keeping my fingers crossed after hearing from (and about) people who have kept their hair, albeit much thinner, and with the odd bald patch, by using the cold cap. And also what Cress said about how it grows back much quicker if you haven’t lost it all - I can see why a lot of people can’t be a**ed , though, as it does hurt a bit to start with, and keeps you at the hospital a lot longer.
Cress, funnily enough I , too, had been thinking we should have a a virtual New Year’s Eve party -especially as there seem to be quite a few people on this thread who are having their first chemo on Monday.
I was as high a kite for the whole of the rest of the day after having FEC 1, thanks to the third drug they inject you with that ‘may cause feelings of lightheadedness’. That bit, I’m quite looking forward to…
I had my first FEC yesterday, 28 December. It may have been after Christmas but I think I still count because since diagnosis I have been feeling crackers, and not those things you pull with bangs and novelties and terrible jokes.
I swear that my days range from almost normal to on the verge of a nervous breakdown. Christmas was a relief but then reality hit again.
I did have the cold cap. It was freezing when I put it on and I shivered a bit but then - nothing much really. I am worried that it won’t work. It didn’t feel bad enough. The nurse said I will lose the hair in front of my ears because it couldn’t fit in, but the rest fitted in. The nurse put her finger in the forehead and pulled out ice. My dad said he could see the ice too. so I hope it was working. It was just really long winded. The nurse said it has a 70% success rate. If I’m in the 30% who lose all their hair I don’t know what I’ll do. I’d rather give up than go bald is what I really feel.
My head tingled about an hour or so after the cap came off. I am scared that this means my hair will fall out.
Someone bought me a hot/cold water bottle for Xmas. If I freeze that at home and stick that on my head will that stop my hair falling out, or stop the chemo killing cancer or make no difference whatsoever?
Since then - I feel absolutely normal today. Er, I am relieved I feel normal but it doesn’t seem right. They gave me anti-emetics and steroids. But I’ve only got enough till Monday. I took them for breakfast and lunch. Should I keep taking them each time I eat or should I wait till I feel ill in case I run out?
If I’m not ill does that mean it isn’t working.
Will I get sicker over the next 2 weeks?
Will I get sicker with every session?
hi all as promised i have changed my profile pict to show my new hair style, i was VERY long before i cut it to a bob, now i have cut it again, ready for the fall out, sad really because i quite like this style, shame i cant keep it a bit longer than the two weeks before it starts to fall
hope everyone is ok and welcome to all the newbies and anyone else out there looking to join us crackers xx
It sounds like you have a lot of questions following your recent treatment, do you have a breast care nurse you could contact to talk things through? Please do also remember the BCC Helpline is available to provide information and emotional support. It reopens on Monday 9am-2pm Tel 0808 800 6000.
Hi IWTL, I have just seen your post and I am not much use in the evenings as I am so knackered but I didn’t want to leave you with no answer. At least you are underway now - you have started chemo so you can begin to tick them off. We all feel hysterical at times - we are completly entitled to. The whole thing is a total nightmare. You can always come on here for a rant. In my opinion the cold cap works well for nearly everyone who perserveres with it, so there is every chance you will keep most of your hair. Don’t drive yourself bonkers with cold water bottles, I think you will laugh at that later. Hopefully we will all be able to laugh later. Sickness pills - not everyone feels sick - but they should give you extra just in case. Best to just take then for the first few days as it is easier to prevent feeling sick than it is fix it. Next time ask for extra, or if you do feel sick - phone them up. Most people don’t need extra steriods, just for a few days. Everyone really is different - you can’t assume you will have the same side effects as others - some people do very well. It’s difficult the first time cos you fear the worst. Next time you will have a better idea. Make some notes about the side effects you are having so you can tell the nurses and they can help you. Sending you a hug, xxxx
hello December peeps, I’m starting chemotherapy January 4th can you please pass on any tips that would be useful especially about the cold cap . when to wash hair before and after chemo. I have read loads of posts but forgot everything ive read.
Thank you for any advise. Absolutely dreading it !
xxx
HI TWBAD
I’ve had two fec and used the cold cap both times although my hair is considerably thinning (started 2 days before second treatment). So I might be one of the unlucky ones…
…it adds time to the treatment and is a little uncomfortable, but wasnt unbearable for me… i just found the chin strap tight.
the nurses slapped a load of conditioner on my hair prior to putting the cap on, i think this helps to make contact with it…
and they advisd me not to wash it for 2 days after and then ideally only once / twice a week and with an organic products and no heat styling!
Hope all goes well and will be thinking of you on the 4th.
Mx
Afternoon everyone,
Lolly you look amazing, had my hair cut really short yesterday and I have not learnt how to put photo on here eat or maybe I’m not just brave enough , I will take inspiration from you . You can do this good luck and thinking of you.
Hi Elki Wow you certainly had a time of it I am sorry, hope you are feeling better now.
MandyP I think we are entitled to feel neurotic this thread and BC nurses and everyone I have to see and who sees me usually in a state of panic tells me to ok. Herbalist sounds good and no never heard of holy basil. Massage a good idea might try that too.
H144 I’m still relatively new had surgery Oct 24 and first FEC on 20 December. I am 54 and no we are not oldies. I didn’t do cold cap either for exactly the same reason as you. Heartburn has been a bit of a pain but hubby did me a twinings ginger and mandarin tea with half a teaspoon of manuka honey Using slightly cooled boiled water, it really helped. Try not to go alone to appointments, I don’t but I find it hard to ask a friend if family just can’t do it but I am learning, always good to have someone with you as I just hear all the negative stuff. Everything crossed for you and lots of love.
Cress a mind of helpful information as always and tHANKYOU as always. Having a better day today put on makeup to detract from new really short hair and went for a walk, complete with hat and scarf of course but no surgical mask today!
Sue I agree lets kick butt in 2013,great idea
Sharon, Cress is right settee for couple of nights is only temporary.
Cybele, glad you felt of yesterday and like you my anxiety starting to build for FEC2 and you Re doing co,d cap you are brilliant
I want to live AnnaB is absolutely right speak to the helpline, I have and they were brilliant tank I have phoned Bc nurses quite a ,lt too which what I thought were silly questions but they too are amazing.
Love to you all
Cathiexxx
ps repostedthis as obviously typing gone to pot today so sorry if reading twice.xx
Hi everyone Couple of days after 2nd FEC and thankfully not feeling too bad - anti sickness tablts are working! Hope I’m feeling the same tomoorrow as having a few people round for New Years Eve - not the original plan but didn’t know about bc with original plan! Can’t believe what has happened over the past month!
Cathie C - thanks for your comments. You are right about not going to appoinments alone and I will try to arrange somebody to be with me in future. Your hubby’s remedy for heartburn sounds good and is definitely worth trying.
IWTL - I think we all feel as though we going mad & that we have stupid questions but as anurse told me no question is stupid if it’s worrying you. As others have said use the helplines as they are good.
A Happy and Healthier New Year to everyone x
it’s nearly 2am and I’m wide awake and I can’ ttake a Lorazepam, because I took one last night, and if I take one every night I will become a dope fiend…
I’m going to be a complete zombie when I go to see the oncologist in the morning.
To all those of you who having FEC 1 tomorrow - good luck! The whole things rapidly becomes a lot less scary after you’ve experienced it once - for me , the fear before FEC 1 was HUGE - now I’m coming up to FEC 2 and thinking, yeah, whatever…
OK, that may be a slight exaggeration, but in the same way that living with a diagnosis of breast cancer has become the new normal -
(took 3 months to get there, what with the whole denial, anger, refusal to participate, threatening to run away to Goa and eat mangoes, and generally sticking my fingers in my ears and going 'la la la la la ’ etc, but I’m there now)
having chemo is now another new normal…
It’s horrible, but it’s doable.
Hope you are asleep now Cybele. You might be better off getting some Zopiclone (sleeping pills) then using Benzos to sleep. They are still addictive but not so hard to get off. Save the Lorazepam for what it is good at - putting the lid back on hysterical anxiety. I only tend to take my diazepam when I have become a crazy sobbing nutter. Some might say I need more of them…
I am now up cos I think I have hubby’s cold, so I had to get up and take temperature. OK at the mo. Terrified of A&E. Last place I want to go for new year, but it is where my chemo unit makes you go if you have a temp. Last time it was rife with Noro virus, the doctor was about 12 and had never seen a Hickman Line, No-one was washing their hands, they just wouldn’t do the blood test and kept trying to Xray my chest, scan my heart, examine my feet (I am not kidding), anything but just take the blood to find out if I was neutropenic. I felt lucky to get out alive, and I think that was cos they had no beds. But I have a very sore throat and I keep sneezing. I think I may be needing the diazepam soon…
hi everyone,
been for my first FEC, wasnt as bad as i imagined, the nurses was lovely and freindly, took about 2.5hours so that was a bonus as was expecting 4hrs for some reason, didny do cold cap whimped out, at home now with my bag of goodies, waiting for the side affects to kick in, hope they wont be too bad as feeling like normal at the moment ,suppose it will be tomorrw when it starts.
love to you all happy new year. 2013 is when we kick a**e x
lolly x
Just had my first FEC and decided to give the cold cap a try just to see what all the fuss is about - jeez - can’t believe not even a small dose of aspirin is offered for that agony when an elephants syringe of morphine is actually what is required. Childbirth was a doddle in comparison! It better work after all that. Got a wig appointment booked tho as backup. Happy New Year all you lovely brave ladies. It’s a horrid place to find ourselves in but we’re all going to soldier on and dropkick this nasty little beastie cancer into nowheresville where it belongs. So there. Here’s to a 2013 filled with good news…xx
