Getting ready to begin

Hi Everyone,
Not been on for a few days due to as Ali says ‘Chemo Hangover’ felt quite spaced out this time but actual chemo went better.

Tracey i’m on TACx6 just had my second i was told it makes you ‘a bit sicker’ than the other - FEC? Not having FEC so can’t really compare but all i have had is nauseous feeling but not sick for 7-8 days but think if i drank more water it would be less, after that some quite weird pains down my spine, shoulders and lower back but co-dydramol gets rid of them ! also having a blood cell booster injection everyday for 7 days after chemo which is working, as my overall count was 2.6 and only needs to 1.5 to go ahead with chemo they said! but day 9 i really perk up- its very sudden i wake up and back to normal, which is this saturday so cant wait ! main thing is to eliminate the pain and keep your digestive system going! you still get the -no taste much but haven’t suffered with any mouth ulcers yet so thats good.

Dancing Girl - Boys are getting used to no hair but i thought it wouldn’t bother me and i’ve found it really does haven’t been out since last Fri when i shaved it off and don’t seem to like my wigs anymore so just wear my bobble hat that i’ve always had for winter even in the house, think its a comfort thing as it doesn’t makes me not look any different, keep thinking i’ve got to get used to it as i’ll have it for a while.

Shell x

Hi All

Ali - was browsing another thread yesterday and came across a post by you about weight loss leading to possible delay of treatment which I thought would be well worth mentioning here. I had FEC 4 on Wed of last week and am still feeling sick and very weak. I’m wondering if it’s because I’ve lost some weight so the chemo is having a stronger effect on me. Or is it just a build up of the drugs? I was only weighed before FEC 1.

I’ll ask the onc next time, but just wondering if anyone has any thoughts meantime.

Oh and also read a very funny thread called WIND, which is very appropriate this cycle!

Shell - My daughter (8) was very upset about the no hair thing at first but is totally used to it now. Like you, I’m wearing a wig less and less and have discovered hats which I’m sure I still wear often even after my hair has grown back.

Hugs to all

Lilac x

Hi
Lilac - Sorry you’re feeling poorly. Just a thought but could part of the weight loss be dehydration. FEC3 for me was the worst but because I was so tired and sleeping lots I was defenitely not drinking as much as on others. Noticed my wee was alot darker for upto a week after chemo and the tiredness didn’t lift until day before FEC4. Did make huge effort to drink loads more after chemo since and have found the last 2 easier, despite the gum hiccup. Number 4 done so we are getting there, roll on xmas!
Big hugs to you and hope you pick up soon.

Has anyone been getting nerve tingles. It’s a bit like the feeling you get with goosebumps but no goosebumps and goes all the way to the end of my fingers and toes and happens when I am on the sofa, in bed or getting tea. It also happened last night in the middle of a hot flush. It’s not painful but is uncomfortable. Not sure if it is due to the chemo or the antivirul tablets i was given last week which are used to treat shingles. Anyone any thoughts or ideas?
Ali.
x

Hi, Sorry, you’re feeling so sick and weak Lilac.

I lost 6lb the first week after FEC1, managed to put 3 or 4 back on before no2. I’ve lost 6lb again this time too. I drink plenty, but just have no appetite that first week. Will try to put it back on now as I don’t need to lose weight (sorry those of you struggling with the reverse!). I hadn’t heard about them not going ahead if you’d lost too much weight - they didn’t weigh me again though.
I had an idea that nuts might be a good thing to eat as they are quite high calorie for a small amount of eating - also healthy as although high fat content it’s good fats. Got OH to add some to the shopping list today - might be worth a try if you like nuts, Lilac.

Alicats - last night I got a strange tingling, in one long line, across my nose and cheeks - happened twice for a few minutes each. Not painful, just weird. Chemo seems to be able to cause any number of weird things.

Beeboo. I’m sure you’ll get more used to the hair thing soon. I mostly wear hats, scarves round the house. Nice big, thick hat to go out in the cold (makes me look about 20 years older!). Just wear the wig to to be indoors in public. Oldest son is OK with the full monty, daren’t show the very depressed son. I must say strong winds are very unsettling when you know you only have a wig or hat which could go at any time.

Hope the SEs lessen. Stella

Hi all
I lost a lot of weight after surgery and through chemo one - was stress they decided. Over two stone, and i wasnt over weight to start with. Put about half of it back on, but had to concentrate on eating lots and high calorie. Can’t do it for the first few days after chemo though. Nuts are good, also i eat avocado like they are going out of fashion, add lots of oil to salads, soups etc. If you aren’t avoiding dairy, cheese is good to add to stuff and at the moment i think weight is more important than cutting things out of your diet if it means it makes you recover quicker. A nutritionist recommended whey powder, not he body builder one by one called whey to go, it is more natural, and you add it to smoothies and soups to help build weight. Might be worth a look?

I have such a collection of scarves, went a bit over the top when I knew I was going to lose my hair. In these cold winds I reckon one is not enough though, so the expression ‘double hatter’ has crept into our family vocabulary, meaning it’s a cold day!

I wear a hat out mostly, have worn the wig only twice, to the pub where I didn’t want the attention and the looks from the people who hadn’t heard about me having chemo.

I do go bald in my yoga class though, it’s not comfortable to lie down with one on, and I think it might fall off anyway when I do the upside down stuff. They have all got used to it, and no one takes any notice any more.
Best wishes to all.
X
Rusty

Hi All,
Had not thought about the wig/wind issue, so that did make me laugh. Feel that it will only take a gentle breeze at the moment to dislodge my hair - it is on borrowed time!!
Debs and Shell - glad to hear you are both feeling well. I suppose I will be able to compare the ‘merits’ of FEC and T quite soon! Nausea has not been too bad - more like morning sickness than anything else. One thing that I have noticed is the ‘hangover’ aspect that everyone describes. Exaserbated by lack of caffeine for me- took me a couple of days to realize that I was probably having major coffee withdrawal headaches on top of chemo ones. I’ve just stopped drinking coffee for the duration now, so hopefully next time will be better. It seems a little unfair though- my twin pillars of my day- a Starbucks flat white in the morning, and a nice glass of wine at the end of the day have both gone!!

Flu jabs everyone? A GP friend of mine suggested I get one- the whole family is entitled to one - so I’ve booked us all in. With three school age kids, it seemed like a good idea.

On the weight loss theme- it’s too early to tell for me, although I have lost half a stone since diagnosis, but I think that was the initial shock and stress,
Love to all, Tracey

Tsr, I thought the flu vaccine was a live jab, so your body wouldn’t be able to cope with it with your weakened immune system. I really would check with your chemo unit before you go ahead. I know some chemo nurses tell you not to have live yoghurt in case of infection.

I am happy to be proved wrong, and maybe I am on the cautious side - i won’t take antacids without checking with my chemo nurses first!

Best wishes
Rusty

Hi all i have just had this conversation with my chemo nurse the flu vaccine isnt a LIVE virus its the nasal drops one apparently is ( you can google it) so if you are feeling well and no prior allergy problems then she said its ok to have one
xJulie
coldflu.about.com/od/flu/f/flufromflushot.htm
cancerhelp.org.uk/about-cancer/cancer-questions/should-i-have-the-flu-vaccine

Yes, I was wondering about the flu jab too and will ask my onc at next chemo.

I’ve turned a corner at last this cycle and was able to get outside for a walk in the park. The nausea has diminished too, although not the horrible chemical taste. I’m addressing that right now with a large piece of strawberry cheesecake - goodbye weight loss!

My wee girl was very upset before school today - the past 10 days have been tough on her. Amongst other things he said she wished I’d never gone for a check-up then I wouldn’t have to have the medicine that makes me sick. It’s so hard watching your loved ones struggle with all this, especially your children. Stella, you have all my sympathy.

Lilac x

oh Lilac good on you for the cheesecake girl worry about the weight loss later you deserve it for now . You just have to make sure you tell your littleone although its making you feel sick now its just showing its working and making you better.xx take care Julie

Hello everyone

Well didn’t get to France last w/end due to rough sea meaning ferry might not run and I wouldn’t get back for pre chemo bloods! So went for bloods and then pre assesment and they were very ok so had FEC 2 yesterday afternoon and apart from usual foggy head and hangover effect am ok. Walked dogs in pouring rain this morning…good to HAVE to get out…really helps to be honest!
Had a very funny incident on Tuesday…my hair is starting to clog the shower so I took the dog clippers to it on Monday and now have very fetching number 3 and lots of woolly hats. The hospital wig people gave me a wig they couldnt rehome on anyone elses head and were horrified when I asked them to cut it like my hair…its usually short and unruly. They are more used to ‘styles’ so found it hard to say the least! anyway now have spiky unruly wig…Soooo gave it a trial run on tuesday complete with hat over it as was freezing…however trial run was to 8 year olds parents evening where the little angel announced to a room full of parents and kids…‘Hey mums wearing a wig…mum lets see it, can you take it off and show everyone’ The whole room erupted in hysterical laughter form the adults and surprised gasps from the kids and I must say I have not laughed so much in ages!
Out of the mouths of babes hey?

That is sooo funny!! Kids are wonderful - so matter of fact. I remember my wig - made of disgusting man made nylon stuff. I used to have great fun taking it off in the car at traffic lights - the look on the other drivers’ faces… priceless!!

As soon as I got into the house I used to hang it over the banisters and if it had been in a smokey atmosphere (pre no-smoking days), I used to Febreeze it!!

I had FEC too and did pretty much the same as you but got the OH to clipper the hair and then shaved it off myself. Quite liberating but scary all at the same time.

xxx

Hi Rusty,
No, I had already checked with the head chemo nurse- like you I am a very cautious and obedient patient!!
Tracey

Hi all,

Well it looks like the cold cap has made no difference. Day 16 after first chemo and my hair has suddenly started to fall out big time!!!
My family are being really supportive, but it is really hard to deal with even though I was expecting it to happen.

Julie
X

Bad luck Julie…at least you were offered a go…I just had to go with baldness! Going to shave mine in next day or two as even 1cm bits falling all over the place is really getting to me!..all over keyboard as I write!
Just avoid mirroes for a while LOL!
My family have just accepted it and a couple of mates have said no hair suits me…mmmm As I don’t ever use make up I might have to learn!
Hope ur feeling ok folks and have a good weekend!
LIF

Hi LIF,

I must admit I dreaded washing my hair this morning and was very careful when I dried it! I have got a wig (it is sitting in my wardrobe on a stand, with a bag over the top!)but finding it hard to deal with the reality that it won’t be long and I will have to use it.
It seems that everyone seems to cope with the hair loss very well on the links that I have read, which in some ways makes me feel that I am not handling it very well.

Julie
x

Hi all
Julie- I thought I would handle it really well because I’ve been so positive through surgery and results but I was shocked when I didn’t handle the hair loss very well still not really shaved it off last fri and haven’t been out since I was quite excited about my wigs Because they’re really nice but I don’t seem to like them now ! Only go bald when I sleep which is quite nice but I am having a bit of a problem looking in the mirror still. Finding wearing my normal winter wool hats comforting because I look the same I know I will get used to it but I’m sure it will take time so your not handling it badly on your own !

Shell x

You remember that fashion there was for a while for guys to shave bits out of their eyebrows? Well that’s what I look like right now except not so neat! Thank goodness for Look Good Feel Better - we were taught how to fill them in with a pencil and I have to say they look fine. Eyelashes going too but plenty of eyeliner really does the trick. Then there’s the blusher to hide the pale face - I’ve never worn so much make-up in my life!

Lilac x

I have had a good, positive day. Had my sister in law and her cousin over today(who went through chemo 2 years ago).Spent the afternoon being shown the art of tying head scarves and actual got my wig out the cupboard and tried it on again. The wig really made my head itch so I think I will be wearing scarves more.
I can’t believe how much hair has fallen out in one day!!!
Hope you all have a good weekend.

Julie
x

Oh Julie,
I’m sorry - I’m looking dubiously at mine. Day 12, and no cold cap, so won 't be long. You’re still you - with or without the hair- it’s just a bit of an 'identity, ’ none of us want isn’t it? Got my suburban turban hats waiting, but like you, I’m sure I won’t like them quite as much when they are a necessity…
Tracey x