Starting Chemo, June 2010

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Hello I’m new to posting but have been reading this Forum for a while. Just eligible for this thread as have first of six FEC next Tuesday. Am at that point of wanting to get on with it now, but will enjoy last 2 days of Freedom having days out ! then a day catching up with chores, cleaning house etc then … sit back and see what happens, cold cap, injections, SEs here we come !

Wig - had a first appointment today but nothing really my colour - various shades of grey, so the lovely lady is ordering some in for me. Quite thought there would have been many in grey but guess this wretched BC affects so many younger ladies. Pleasantly surprised wigs arent too tight fitting. Do you all manage without using sticky tape ? I’m worried about windy days on country walks if the FEC allows me out of the house over next 18 weeks.

What a great place this Forum is.

Kirsty

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Hi Gill

Sorry you are having such a rubbish time. I’ve just had my first fec and am waiting for the hair loss. I really don’t know how I will feel when it happens but I’ve never been that bothered about my hair. For me I think my eyelashes and eyebrows will be worse.

Am so sorry that this made you miss out on doing something you wanted to do today. That is one of the worst parts of this. I hope you feel better soon. Debx

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Hi all,
Well I’m in here somewhere amid the fug, It’s not too bad really (my typing will be a giveaway tho)just a bit nauseous, no sickness. Decoded to stretch the steroids over the 4 days so no hyper episodes although I did sit on top of shed no 1 roof yesterday to paint side of shed no2 (I know Suzi 2 sheds!!) till my neighbour said…I think you’ve done enough now!!. She was right tho.

Waiting for lansaprozole to kick in then I can have brekkie (not taking any chances this time).
Arm still sore with vein pain and my new panic is now about how I will be with a line in…found an old post (Sorry Maria) that said some found it restricting and painful and the infections (eek eek eek a whole new worry)

Sandra your wig is really fab, you look soooo much younger (and you looked young already)hope you are ok and getting used to your new hair friend as well as your new chesty friend…how many new friends you have these days. Anyway hope all is well…I still have a splattering of fine hair all over , very thin in some places but actually getting used to the look (never ever thought that would happen) and even been in garden with my natural look as it’s too flippin hot for wigs. Good job neighbour is an ex nurse whose friend incidentally has just retired as a chemo nurse at my hospital! Small world.Love the new background pic…why don’t our oncs dress like that all the time (mind you only if they were good looking ones lol)

Gill hope you are ok and counting the days till your wig arrives, it really is the most poopy thing isn’t it but hey when we live forever it will be well worth it :-))Get some cool cucumber pieces on those eyes and give them their sparkle back xxx Good luck tomorrow with No2 I’m on no 2 and it’s not too bad :-)) thinking of you hun xx Have the indegestion stuff before it starts is my advice on this one.

Hi Deb hope you are feelikg ok after no1 and the SE’s are copeable (is that a word?)

Hi Kirsty, nice to meet you. Sorry you have to join us but we are a great group to help get you through all this so hang on board…hold tight cos it’s quite a ride with us sometimes lol. Support in abundance is what we are and slightly crazy on the odd occasion. Good luck for Tuesday, you will be fine and put any concerns on here and someone will be around who’s been there to help you out. Hugs xx

Carol hope you are feeling ok. I got a cheaper wig from wigstoreuk online…it’s ok but not as good as the Nustyle ones. Re my veins…Oh my God I had numerous heat packs, drank loads of water, had it running under hot tap for ages, 2 and a half hours and 4 attempts (painful attempts too ) and not a bl**dy vein in sight. The one they used tried to give up near the end …didn’t think it was going to let the last 30ml in but we persevered and i hurt like heck. Lots of vein pain now and I only got the one arm to go at cos of node clearance…oh the joys.Scared about having a line in but no way will my veins cooperate next time as nurse said they will just go worse from here in great!!

Jo and Sal hope you are both ok and Jo the sickness stopped after the jab.
Hope Lesley is ok and having a great holiday and forgetting all about peachy mother and Love to Vickie (who visited my whilst having my 2nd FEC ) and Sarah)
Ok off to eat then lie down…burny feeling at back of throat come on lansaprozole do your stuff :-))) xxxx Suze Xx

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Hi all,

Thank you for your good wishes about SE’s. Feel a bit brighter today can’t seem to stop sleeping, all at the wrong time though soundo all day and then wide awake until 3:00am. Nausea and sickness seem to have stopped though.

My youngest has just come down with cold! Nightmare, am avoiding him like he has plague bless him. He thinks I’m being really grumpy so I’ve told him I’ve got germs so he won’t feel too bad.

Sandra, I love the wig!! What a fantastic look.

All the best everyone.

Love JOxx

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Afternoon all

Am still emerging from chemo fog- really wierd. Feel sick all night and until about 1.00pm then feel fine again until bed time. Have tried eating little and often- keeping crackers and bananas by the bed- glugging gaviscon etc. It just reminds me of morning sickness- hope it gets better soon.

Am going for my wig on tues- hope I look as good as you lot.

Hope everyones wobbles get sorted and your little boys cold gets better soon Jo. My youngest managed to get rid of chicken pox a few days before chemo- very thoughtful of him but at least it was out of the way.

Fingers crossed for a better night tonight- although with this heat- yuk- oh and dont mention the football. debx

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Hello all

At last found a website with head gear I like ! am not a hat or scarf person but reckon I’ll need something to wear to sleep in and around the house. Hoping the wigs ordered in will suit me for all excursions outside the house.

The website for lovely head gear is scarfhut.co.uk Anyone used them ? Only one full day of freedom till Chemo No 1, will be glad when its over, keeping busy to take my mind off it, and treating myself to trip to John Lewis tomorrows for silk pillowcases !!! heard they help with caring for the hair - dont snag and pull like cotton ones apparently and are kind to tender skin (also said to be good for asthma sufferers etc). May be an excuse to get silk sheets too - sound cool and maybe more !!!

Thanks for the welcome Suze, Best wishes to everyone.

Kirsty

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Lovely wig Sandra! Just been to the two day YoungWomensForum in Swindon, can thoroughly recommend attending, all of us there agreed that the hair loss was traumatic. With a few ladies there further down the line it was good to see how nicely it had grown back for them. Not been wearing my wig in the heat either. Hugs to everyone. Tinax

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Wow, so many posts… Been in the post FEC2 fug, so might not find it easy to catch up. Sorry to all for hair loss. Me too! Cold cap’s worked a bit, but I have a ginormous bald spot, so a buff is more than necessary. Can’t work out whether to just shave or keep going with some. So depressing to have it coming out in handful though.

Emend didn’t work for me. I was absurdly grateful to get it, but then had a reaction to it, akin to being hit by a truck. Swollen red face, couldn’t move. All a bit scary really. Oh and ironies of ironies, it made me more sick than whatever it was they gave me last time. I am though unlucky, as 1 in 1000 have such rare SE’S - just wish it wasn’t me. Feel lots better today, as I think they’re cleared from my system.

Ah well, eh. Least it’s sunny. I’ve only got one more FEC to go, then onto Tax, and hear that’s less likely to make you sick, though more likely to make you ache. Big yeay for that then.

Can’t catch up with all as still too addled, but loving the wig, Sandra!

Hi to Kirsty. Ignore my moans, you’ll be okay. My first FEC was really fine - only nausea that’s dogged me and many on here haven’t had that at all.

Deb, hope you’re more upright by now. Glad the pox has gone. At least that’s one less thing to worry about. I can imagine in the heat that wouldn’t be fun to around a small person with itches.

Jo, hope the cold has fled, and the SE too. I hear you on being grumpy. Yesterday I was like a bear with a sore head. Managed a bit more cheerily today, so hope you did too.

Suze, really hope the drugs are working well. You sound very on top of them. I only have one lot left, and they make me feel worse, so am on nothing for now. Poor you with the veins though. I have one blg black vein now, so am nervous next time might be a mare. Hard to cover up in this heat too. yuk.

  • Gill, hope the wig arrives soon. Sounds like you’ve had a horribly long wait for yours. Have you tried Buff’s though? Bit of a favourite in this house. Very adaptable for total hair loss or a having a bit left. Might be worth a look?

Got to go now. Sorry if I missed anyone but here’s to a sleep filled night for us all. xj

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Hi Ladies,
Suze, Well not sure l will ever get use to the wig. but thank you, we know how to cheer each other up don’t we?
Yes so many new ‘friends’ although l prefer all of you to my two friends!!
Oh l wish my neighbour was an ex nurse, instead of 5 young children, that are lovely, just don’t want to frighten them when they pop their heads over the wall to say Hi! so l have to make sure l am suitably dressed!
Not sure l would like to see ‘my’ onc dressed like that! as nice as he is, think his bot. would not be as ‘firm’ as the french onc’s bots!! xxx

Jo, hope you are feeling a bit brighter, the weather doesn’t help, but those two little faces must help you! xxx

Midge, Good luck with the wig! xxx

Tina, Thank you, l am finding the wig comfortable, had it on every day since Thursday, even in the heat today, l have been fine, bit of a case of no sense no feeling l think! xxx

Julie, Poor you, sound as though you are really suffering xxx

Hi Kirsty, good luck with scarfhut, difficult trying to see what suits xxx

All being well 2nd FEC this friday just come round so quickly, have felt really good this week, so l will be ready and waiting!

Wishing mild side effect to one and all
Sandra xxx

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I’m back, been offline for a few days to celebrate my birthday (didn’t go anywhere, just out and about, went for an Italian meal last night, that was fabulous! May be suffering a bit for it this morning but it was worth it…).

Julie, my lentil biryani recipe is simply - chop onion, poach in a little water to soften, throw in curry paste of your choice, add rice, lentils, mushrooms whatever. Cook until rice and lentils are soft.

Couldn’t work out why it tasted so sweet though, then realised that was the red pepper in it - normally I don’t find them at all sweet so that’s a taste change. I’m finding processed sugary things too sickly, but honey-roast ham tasted amazing! I don’t have a sense of smell so my sense of taste has never been that great, things usually have to be very sweet or very spicy for me to like them, so in some ways it’s actually improved a bit!

My hair has been absolutey rank, really thick, straw-like and greasy, finally found a shampoo that would help with it so that was a relief. Had nasty red itchy spots on my scalp and chest, so have been using a tea tree facial wash for that.

Had nasty acid indigestion for a few days last week, but either it went of its’ own accord or the acupuncture last Wednesday stopped it - that was the most powerful session I’ve ever had, nearly passed out when she started but felt so much better afterwards.

On the plus side, my hayfever has gone and I’ve stopped biting my nails, so it hasn’t all been spots and acid burps! I’ve also lost a pound in weight this week, but I think a lot of that has been sweat!

Off to Hobbycraft today to stock up on card making stuff for when things don’t go quite so well and I don’t want to leave the house - at least I can make some Christmas cards!

Keep it strong ladies!

x

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Happy Birthday Mrs Sloth! My hayfever’s been a lot better this year too. And thanks for Biriyani tips. Sounds delicious.

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I am really fed up with cancer today!!!

1st Fec I have to say hasn’t been as bad as a thought it would and I know that I knew exactly what to expect. But still I’m not ready for my hair to fall out yet and it already is!!! I’m showly shedding and it seems to end up in my mouth or face all the time!

Just realsied how many explanation marks I’ve used. Must calm down. They did tell me my hair would fall out so not sure why such a shock.

Told the boys all about it at tea time and my oldest took the lead and let out a huge belly laugh. But then when I was putting him to bed he said to me that he had laughed as he was worried he would cry and he didn’t want to make me sad. Poor little man he’s only 5 years old!

Anyway Happy Birthday Mrs Sloth, the Biryani sounds fab and I reckon I’ll give it a go once my taste buds feel back on track.

Sandra know what you mean about your onc mine is a very stylish woman so she’d definately have changed the picture! Good luck for bloods and second FEC on Friday are you 3xFEC and 3 T? Nice to know you felt good this week as helps all of us a step behind you to know there’s hope we’ll feel better soon.

Julie, Gutted for you about EMend I hope you find something else that works for you, Doc gave me something that disolves under lip which has been really good for the nausea, went from V bad stomach cramps to nothing v quickly, sorry if you’ve already tried them just hoped might help. Just looked are called Prochlorperazine Maleate (Buccastem ).

Tina, Young Womens Forum sounds great I went to a local group and it was great to see women who had their hair coming back. I saw someone out and about today who was at chemo on Thursday and she said can’t bear heat from her wig either so has decided to be brave and go without for first time, hysterical though as she had it in her handband I nearly wet myself when she showed me!

Kirsty Scarf website looks fab have to let us all know how you get on with them and the silk pillowases - sounds wonderfully indulgent doesn’t it!!

Midge, Hiya, I know exactly what you mean about the heat my lovely OH has set me up with a standard fan that is a god send as I don’t seem to be able to cope with the heat at all!! Even been sleeping with it on. Hope your youngest has recoved from the pox! I remember my boys were very proud of their pops! Jake even loves the ouple of marks he still has left from his smicken pops! I do remember though how clingy and grumpy they were with it so thank goodness it went before the Chemo. I’ve lost track of days but if your chemo is tomorrow then good luck and here’s to mild SE’s.

Suze - You really cracked me up with the thought of you having had your chemo and then sitting on your shed merrily painting!!

Sorry t anyone I’ve miseed I’ve run out of steam. All the best everyone!!

Love Joxx

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hello, ladies

FEC no 2 fug gradually clearing! SE not quite as bad this time (probably due to the lower dose).Spent most of Sat in bed but didn’t sleep ALL day. Appetite coming back today. Went to my day at the hospice day centre and had a “work out” in the hydratherapy pool with the physio, lunch and then some reiki, never had that before but will def have it again.

just started raining here-Yipee

Kirsty- the silk pillowslip sounds like a good idea, probably cool too in this weather.

Suze-sorry you’re having so much trouble with your viens-even with the hot pack-mine ok so far but early days.

Mrs Sloth-Christmas cards already. I make my own cards too and my OH says it’s time you started thinking of ideas for this years. I have several birthday cards to make before that!

Sandra-still trying to find a suitable background for my next pic.

Carol xx

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Hi all

I started FEC T on the 16th but having at home so feel really isolated. Does any one get really bad headaches???

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Good Morning, Gill-yes feeling bette today, actually HUNGRY so I’m off to have my porridge, Still raining here.

Sorry you had an ordeal at the hospital. when I went last Thursday, they nearly got my notes mixed up. ther were two Swanns at the clinic at the same time-weird.

Have agood day

Carol

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Hi

Gill what a pain. As if it’s not time consuming enough. Glad u got it sorted though. The good thing is they are sure to be really organised with you from now on.

Am feeling a bit more human today too Carol. I actually fancied a cup of tea this morning. Hope these new sickness meds keep it all under control. My mouth still feels dry and I still have the yucky taste. Does that last whole time or should I be hopeful that it will wear off too.

Am wig trying on today. I am so not into the idea . Dx

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