Starting chemo October 14

[LainieG]

Oh good luck for tomorrow Sue! Sorry you're not having the kind of night you want tonight. That's such a shame. Just make sure the family spoil you after tomorrow and make sure you have your own way for your first week. You'll be fine. I feel I'm getting through this so much better than expected. This forum definitely helps. We can rant and moan all we need to and also have a wee laugh when it's needed too. Good luck again and try not to stress too much. Remember you've waited a long time for this xxx

[Dianexx1962]

Good morning all hope you've all had a nice lie in !!
Well my chemo starts on Tuesday .....a bit nervous to say the least .
Any tips and advice would be appreciated .
How did everyone else feel after their first chemo ? Hoping to continue to carry on a little job I do helping out in a gift shop but I know I will have to see how I feel on Wednesday.
Many thanks Diane x x

[sue456]

Hi ladies

Hope u r all having a good weekend and not suffering to much. 

Eeek it's the day before chemo starts and I'm very nervous. Family all coming over this afternoon, which would normally be great to see them all. One of my son's proposed to his girlfriend last nite and there is a ring and everything that goes with it. Sounds very selfish of me but she is ok but very snooty and her family that we haven't met yet are to. Our family are very down to earth . So I never feel comfortable when she's at ours. Today I just want to lounge around in my jogging bottoms and hoody and do what I want to do. That's not going to happen.

I want to spend time with grandson on my own, that's not going to happen either. Sorry for rant.   Sue xxx

[AMDriver]

Hi Jingo-x

thank you for your reply - has given me some hope. The sore patch is definitely smaller today and not as bad as it was either but I am losing a lot more hair than I would expect on a normal day (what's a normal day any more!) and I am terrified that it will fall out in clumps....

My daughter and son-in-law and 2 grandchildren are coming up on Tuesday and will be with me till Saturday - the boys are 2.5 and 1 - so they will keep me busy! I'm hoping that I will react as well to the second chemo session on Wednesday.

My thoughts will be with you tonight and I hope you are well enough for the chemo tomorrow.

[nicnac15]

Thanks ladies for comments re paracetamol id heard it can mask temp too so im worried to take it. going to bed now so hopefully once asleep i will be ok but head is throbbing will ring in morning if no better. x

[Junash]

My son initially worried about his friends but then he changed his mind - think novelty maybe ? Never have really found out whist changed - but I went with it but they're a little older - some are eleven, probably makes a difference. Wouldn't turn up at school though without hat, think that would bee too much for him and me.

[Murphy1963]

Hehehe love this 🙂 I'm chuckling away here thinking of us all. Kitten, head hair went day 17, it started coming out in the shower from day 14 and day 17 it all matted after my shower and I had to get it cut out. I still have some stubble.

My son really worried about my hair and that his friends might laugh at me so I'll always be careful they don't see me without a hat or scarf on. I'm finding it really easy going out with hats and a scarf round my neck and no one would even know you were bald.

[LainieG]

My hair started to go on day 14 kitten. By day 16 almost all gone and I got my friend to shave it for me xx

[Junash]

Update on hair - still have my hairy big toe -- attractive not. Hoping that disappears like Lainie beard 🙂

[Junash]

Xfactor has that affect on me 🙂

My downstairs disappeared first, in practically one hit - think about day 10 after 1st FEC - have spiked bits on scalp like a Mitchell brother but am hairless everywhere else. strange we all get it all differently.

How gorgeous but poignant that your son looking for pics of his mum with hair, my son 10 & his friends saying they can't imagine me with hair. I hate wearing hat indoors so they've got used to me now.
A new normal.

[Epicureankitten]

Murphy1963 - this really made me chuckle 😊 I haven't started losing my hair on my head yet so I can't help - but when you find out can you let us know?! We will all be intrigued now...!

When did everyone's head (!!) hair start to fall?? I am only on day 6 of my first FEC and am curious x
I feel that The BBC broadcast AutumnWatch - and I feel like I am broadcasting "Hairwatch" to all my friends at the moment as they all ask the same "has your hair gone yet?!"
Just as well I'm at peace with the prospect of baldness now 😁

[LainieG]

I'm the same Murphy. Head hair gone but down below still there. On a positive note the beard's gone lol. Hope it doesn't come back xx

[Murphy1963]

Hiya ladies, sitting watching X factor and it just came to me. Hair on head gone but still intact down the other end!!!!!! If you don't mind me asking, how's it with others???? Day 11 2nd fec, I would've thought it would've gone by now.

My 9 year old was searching through photos on my iPad earlier looking for photos of his mum with hair. Bless him xxx

[Junash]

I checked with oncologist as I get migraines - I take paramol which once said was fine, it contains paracetamol. Funnily no migraines since starting chrmo but thrn I suppose it's put me into menopause and my migraines were always around the start of my period.


Day 5 since 2nd FEC - am doing well especially now the prune juice has done its job, feel much better. Bit tired but think I've pushed it a little - csn feel some naps coming on. Who ever mentioned coconut water - think you, horrid taste in my mouth but coconut water is so lovely, clears taste for a few minutes.

[LainieG]

I'm on 8 a day too Sue for fibromyalgia. Will need to check it out xx

[sue456]

i will have to check this one out before i start chemo on Monday because i take 8 paracetmol everyday because of back and hip problems. sue xxx

[LainieG]

While I was in hospital last time they were giving me my paracetamol with the other drugs. I've never been told not to take it. I've noticed that we all seem to be getting different advice. It's very confusing isn't it. I'm getting antibiotics for the steroid induced acne and someone else was told there was nothing they could do?? I will check that anyway but I was in for an infection when they were giving me the paracetamol?? So confusing xxx

[Peta]

Nicnac

Oh Lainie, I've been told the opposite. I always used to take it for my arthritis, but I've been told NOT to take Naproxen, paracetamol, aspirin or Ibruprofen etc because they can mask a temperature, which can be quite serious. It can hide the signs of neutropenia apparently by keeping your temperature down so you don't realise that you're ill and have a rising fever.

Maybe you could give the helpline nurses on this site a ring for advice?

I've never called them but the host keeps posting to say we can ring them for advice.

[LainieG]

Hi nicnac. I take paracetamol regularly for another condition and it's been fine. Docs never told me not to take it so you should be ok with that xx

Hi Peta. I feel ok today. Forgot to take a dose of my anti sickness tho and started to feel a bit nauseous. Not too bad tho. Will definitely try the frozen fruit. Sounds tasty too xx

[nicnac15]

Hi there does anyone know if u can still have paracetamol ive had a banging headache all day and need it gone been so tired today hardly moved hope i feel better tomorrow as its my sons 7th birthday party fingers crossed xx

[bettypoppit]

Hi Kitten, i suffered from terrible acid indigestion - took a tip from on here for omeprazole. ..did the trick and my oncologist has advised to just keep on with it...just another se of the steroids he said!!!

[Epicureankitten]

Jingo - thank you! I don't feel so crazy now lol I have been getting heartburn too - maybe it's linked - I will speak to the Doc on Monday 😊
X

[jingo_x]

could be some kind of heartburn/indigestion?   I had it a lot in week 1 and 2 and took lots of indigestion tablets, oncologist suggested I take omeprazole during my next cycle - just whilst i take the steroids and tablets

[Epicureankitten]

Afternoon lovelies - how is everyone today?
I have woken up today with such a weird feeling in my upper tummy - like it's inflamed?
Sort of nervy feeling - bizarre I know but I wondered if anyone else had felt this?
I finished steroids Thursday and anti sickness last night - I don't feel nauseous at all today - so far - but I just have this funny tummy feeling - No upset tummy either?!
I am chuckling to myself as I imagine you all looking at this thinking "what is she going on about?!" 😃😃

Hope everyone is not feeling too bad today x

[Peta]

Hi Lainie

Hope you're feeling okay today. I found eating lumps of frozen tropical fruit straight from the freezer quite soothing on my mouth, but I don't think my mouth was as sore as yours. Worth a try maybe?

So Christmas, it obviously depends completely on the individual hospital. Like the treatments all different.

[Bevster]

Message for Murphy 1963:

Hope you pick this up hunnie! 

Tried to respond to your private message but after typing war n peace...lol, it wouldn't send & I've lost the whole thing!! Eek 😕 

Would you PM me again & perhaps, if you don't mind, pop your personal email info on there so I can respond to you properly that way?

Hope to hear from you soon.

Bevster xx

[geeG]

Hi Ladies - I see we are all wondering about Christmas - just so long as SE can be controlled by then - and how about 2 days extra steroids, eh? Hugs x x x

[LainieG]

Meant to say I have chemo on boxing day and it's going ahead. They're open that day. Just closed on Christmas Day xx

[LainieG]

Hi Peta. I'm ok, a bit drowsy like you but not too bad. My blood pressure was very low today so nearly didn't go ahead. I'd been feeling light headed all day. After lots of fluids and lying back with my feet up it came back up so it went ahead thank goodness. I'm ready for the sore mouth this time so hopefully that won't be so bad. Good luck . Hope the SEs aren't too bad for you xxx

[nicnac15]

Good evening ladies hope your all well as can be expected feeling abit better today finished all tablets and started injections for 5 days my friend was able to do this for me (shes a nurse). Managed to get into work today for a few hours as we run our own business. My chemo around xmas is planned for 22 dec if all goes to plan im dreading that as i want my kids to enjoy xmas hate not being able to plan this year already cancelled my new year holiday was going to cuba. ! But next year it will happen x hope u all have a good weekend with minimal side effects xx

[Peta]

I had chemo 2 today, feel drowsy so just a quick one from me. Hope you're okay Lainie, you were in today too. I'm on FEC and they dropped my E to 50% because my liver looked a bit stressed. It might go back up next time if liver is happier. I was hospitalised and had loads of antibiotics and an infection during first FEC so that might be why.

Christmas, my #4 is due on Boxing Day. Apparently they're shut so I'll be pushed back a few days. They told me they wouldn't do it earlier, because it could cause problems and then you'd be in over Christmas - and that would cause problems for them as they try to empty out all but essential patients and staff then - so the likelihood seems to be that you'll be pushed back, not bought forward.

Hope that helps and you all manage to fit Christmas in, particularly those of you with little people.

Hope you're all well and all feel better again tomorrow. Xx

[bettypoppit]

Hi jingo_x, yes - snap, monday for us both. Sorry to hear you are a little under the weather at the moment...fingers and toes crossed you can shake it for monday. I am feeling quite chilled about it too - at this point (back on Planet Denial lolol) but like you, expect to be having a meltdown by Sunday night...but putting all my eggs in my hypnotherapy basket early monday morning!

Kitten, i love the smoothies...easy to sip and digest - ive also got some frozen fruit i chuck in too...raspberries, mango, blackcurrants...delish. I'm hoping that eating well throughout this whole process will help. Have eaten a fair bit of spinach this week and a friend suggested black pudding for the iron (aparently body can absorb better from animal than plant) so we had a spanish inspired chorizo, bean, tomato and black pudding supper Wedn.... bloods this morning...hoping I'll be 'good to go' monday.
Big hugs to all - i really think we are all doing pretty well 🙂 xxxx

[jingo_x]

AMDriver I am a couple of data ahead of you, cold capped on 6th. I had the same sore feeling on my crown about 3 days ago, assumed my air was about to fall out in a patch but it still hadn't and has now stopped feeling sore. I am day 19 and definitely shedding more hairs than usual but no patches yet.

Due my second FEC on Monday (same schedule as Bettypoppit I think?) and struggling to get rid of a cold and cough so I can have the chemo.

Feeling relaxed today but think I will be in a bit of a tizz on Sunday night!

Hope you all have nice weekends lined up, I am planning my little boys 6 th birthday and spent today doing early Christmas shopping (25-50% off all toys in Sainsburys until 28th October if anyone else has little ones to get organised for). I hate shopping so glad to get it out of the way!

[Murphy1963]

Junash, I am the same, I am dreading the festive season this year. Had an email from work today telling me the date we are going out for Christmas dinner and as it happens it'll be on my good week, so that's good. They've also asked if we go for traditional fayre or just a curry, I've said everything tastes like cardboard to me so I'll go with the flow 🙂

Junash, you are normally ok with se so hopefully you'll be the same that cycle too.

Great big celebrations next year though for all of us xxx

[Junash]

Mine is dec 23rd and they said they'd like to keep it at that as closed 24 25 26 so for me it is what it is :-(. Thats also my sons 11th birthday - so double whammy - have booked xmas lunch in local pub with famuly but god knows how I'll be doing. Great big bloody celebrations next year!!!!!! am dreading this xmas period xx

[Murphy1963]

Hi debtex, I know what you mean,mi will be due mine 17 December and I was sitting yesterday (that'll be Christmas Day in that cycle) thinking I'm going to be a bundle of laughs. My mum will be coming up to scotland from norwich on 16 December so she'll be here to do all the work, but yes going by how I've felt this week, we are going to be pretty miserable. I know you've got a young daughter, my son is only 9, so I want his Christmas to be perfect but I don't know if I could face my treatment any earlier, but I don't relish the thought of putting it off for a week either. It's a hard one that's for sure xxxx

[AMDriver]

I had my first chemo on 8th October and used the cold cap. Had 3 days in hospital as I was neutorpenic and had a throat infection this week but otherwise my appetite has remained unaffected and I have been lucky not to feel too tired. Monday for blood tests to see if I ca have the second dose on Wednesday.

Just this morning a patch of my scalp around the crown of my head is very sort - almost like it is burnt, the rest of my head is fine - but the crown is so sore I can't touch it - has anyone else had this? and if so can I do anything about it?

[Debtex]

Has anyone had a steer on chemo around Christmas yet ?. Mine is on 19th dec so I'm going to be pretty wiped out for festivities . Onco said they could sort something out but no more detail . I don't want to delay it and prolong the process but I'm also scared to bring it forwards in case it hits me harder because of less recovery time .

[Epicureankitten]

Bettypoppit - I didn't think of coconut water - I am going to give it a go with some fruit and the linseed as I have heard that it is good for you. I had a radpberry and oat smoothie today and I have had a far more productive morning - bit more energy.

Peta - the loss of my sweet tooth is so strange! I have always always hated dark chocolate but yesterday I popped Into the local shop and really fancied a box of dark chocolate mint matchmakers! So they are in my freezer waiting for when the fancy takes me 😊

Hope things go smoothly for you ladies who are having their chemo today x x x

[bettypoppit]

Hi Murphy1963, it's great to hear you sounding so chipper 🙂 Enjoy the housework...when i finally got started on it, I felt good with myself for getting a grip and getting on 🙂 Hope you do too.
Hope everybody has a good or 'ok' weekend. Xxx

[Murphy1963]

Hi ladies, glad to hear everyone is getting on with it. After an emotional and feeling horrible week, today I am feeling a lot better in myself. Been visiting a fellow bc lady I've met at my sons school and it has given me the kick up the backside that I needed. When I think about it, it's only another 4 weeks really of feeling rotten (I'm day 10 after 2nd fec) so we can do this 🙂

Hope anyone having their treatment today has a minimal se weekend. I'm off to do some exciting housework, first time I've thought about doing that in a while. Love to all xxx

[Junash]

Lainie and Peta thinking of you both today - hope it goes smoothly and SE are minimal - one step closer xx

GeeG as you're in ginger mode like me, ginger and tumeric tea from Sainsbury's is lovely & soothing - esp b4 bed xx

Hello everyone else, hope you're doing well xx

[LainieG]

Feeling really good just now. I have done for the last 2 weeks. Chemo tomorrow and I can't sleep! I think it's the thought of feeling rotten for a week after tomorrow. At least I now know that it gets better. I think that makes it easier to cope with it.

Well done geeG for going to work. I wish they'd let me work! It must be a good distraction. Hope you manage to keep it up 😊😊

[geeG]

Hi Ladies

Good to find you all - when anti-nausea meds finished I needed to get more from GP - now Day 8 of first cycle so hoping nausea will fade soon - anyone else struggling to drink water? Nausea jumps from 3 to 10 in a flash! HUGE THANKS to Whoever It Was that said ginger ale is good - I hate (and loathe!) ginger - but see Canada Dry Ginger Ale? - breakfast / noon / supper!!! (How can I drink THAT?!)

2 full days working done this week - hoping for much(most) of tomorrow too - FANTASTIC DISTRACTION THERAPY! Hoping to catch up wig y'all over the w/e… hugs n all best wishes … x

[bettypoppit]

Re food, i did 5 days of fruit smoothies (tbsp oats, tbsp milled linseed, 1 pear, 1 apple, 1 can coconut water,1 avocado..splash of lemon =about 3 servings), shortbread, crackers, veggie soup (carrots, pulses, sweet potatoe, onion, chicken stock) and little and often as and when i felt like it. Turned into the honey monster end of week1 for 3 days...just couldn't stop eating. Went off tea & coffee also. Somebody mentioned tomato soup which sounds good.
Blood test for me first thing in the morning as #2 for me 9.15 monday morning. Going to be listening to my hypnotherapy cd before i head off to hospital, in the hope that it can help me deal with the needles. Fingers crossed.
I would also agree that a little fresh air and light exercise helps to boost energy. I felt quire revved up after and by about day 7 & 8 i was walking more and doing more around the house. I have to say, i have no idea how anyone can work week 1 or 2... i certainly couldn't.
Good luck lovely ladies having treatment tomorrow ....hope it all goes well. Xxx

[Peta]

Hi kitten - it's good to hear that you're doing okay! My sweet tooth disappeared completely too. I ate lots of bananas and found frozen tropical fruit quite cooling and refreshing on the mouth. I also ate porridge and fish fingers - but not together! 😊

A friend of mine who is a doc said that the best way to keep your energy up is to go for a short walk - ie 10-15 mins once or twice a day. He says that boosts your energy levels. People do seem to just feel pretty knackered though, but I did find that my energy levels came back to near normal on about day 8 and have improved all the way along, so that now I'm pretty much back to normal - but I'll be back to square one tomorrow when I have my second FEC. Oh well, it's good to hear that others have done well on their second dose.

[bettypoppit]

Great to read all the posts 🙂 Linz so loving your 'will you shut up talking doom at me' ....brillient 🙂

[Debtex]

Hi all re hair just wanted to stress that I do have some but it's thin will bald bits after the cold cap I haven't lost it all - I didn't want to dishearten other cold cappers . Prob is it looks a bugger and I have to wear hat / scarf otherwise it's all over the floor . Today I had no choice but to walk the dog - ok going down the lane but it's a steep hill and I had difficulty getting home - was literally staggering ! Then did dishwasher , washed floors and generally knackered myself in ! So not back to full strength yet . Re food . I have gone from vegetarian to craving meat . Hospital told me this is my body telling me to eat protein which is what I need . I also have gone off sweet stuff and can't drink tea or coffee . When I go out its vimto or hot choc like a 5 yr old . One positive - prob won't last - is my skin is really radiant looking and seems less lined and my eyes look larger - ... Or maybe I'm hallucinating . I also 'got my pills wrong ' ( like an old nan) and took one instead of 2 steroids each dose ! Didn't seem to effect me - they give me nightmares anyway . Hope everyone doing gd x

[Epicureankitten]

It's so lovely to read how everyone is getting on. I too will have no real hope of remembering names and where people are but it's just nice to know I'm not alone by any means!
I am day 4 as I had my first FEC on Monday - sickness wise I don't feel too bad - I'm wondering if the anti-sickness drugs are just doing their thing. Last steroids are today too.
I have to say that yesterday and today I feel completely knackered. I went out for some fresh air yesterday and it was like a battery running flat! I have never experienced that before! Very strange! Does anyone have any tips regarding how to boost your energy a little? I was thinking smoothies or juices but I don't really know where to start!
On that note - is everyone finding eating at the moment? My sweet tooth has completely disappeared and I can't stomach the thought of anything cake or biscuit orientated!? I literally gag at the thought - which is so unusual for me - I admit pre-chemo I was a cake and ice cream monster!
I have been eating little and often - savoury things mainly. I am quite carb focused but I'm wondering if that is the steroids playing up? Mashed potato and steamed vegetables seem to be my thing at the moment which I guess is not so bad! On a smoothie note I am thinking that as my tolerance for sweet things is quite low at the moment maybe something kind of sharp/clean tasting like Granny Smiths would be best.... But I feel like I need some extra energy from somewhere or maybe I need to just accept that fatigue might be the one thing that I suffer worst with throughout this whole journey....
I guess only time will tell! Xx

[LainieG]

Hi Peta. I'm on metachlopramide and steroids for sickness and they seem to be working for me. If that changes I'll definitely ask for emend (thanks for the tip)

I'm still really impressed with you going out bald. I know we should be able to do that and not care but I am so self conscious even with the wig and hats. I think maybe I need to get used to it myself before showing it to others. I'm even wearing a hat in the house! I'm even scaring myself when I look in the mirror! ?? Ridiculous isn't it lol. I'll get there in the end.

Good luck with your blood tests and with tomorrow. I'm hoping my white cell count doesn't drop any more and delay things.

Love the idea of the flash mob descending on the 'kind ' soul. That made me laugh.😊😊

Love to everyone 💖💖