please do let us know what the onc says re aloe vera, I've used it before when dealing with thrush and it was helpful.
My hair is well... hard to say - its not like hair thats for sure - sort of straw like and you can see the outline of my scalp ..hee hee I don't care - it'll grow back thick and curly -I hope! I've half an eyebrow adn hey ho this morning at the nose end there are tiny tiny hairs appearing!
Milk - must be very cold and only with a wheatabix! I drank lots of rice milk - it was the only thing I coudl drink fro a while and again had to be cold - the cold seemed to take the taste out!
I read that aloe vera juice helps with the stomach problems - so I shall ask my onc on friday and if he says yes - I'll pass on that tip . good luck everyone. :))
Lactulose is a ‘softener’ it helps the absorption of water and keeps the pooh nice and soft!!!! LURVELY! My breast care nurse said senna might be needed as well. I have stocks of things for constipation and for diarrhoea… having prepared for all eventualities I haven’t needed any yet. I guess it may depend on what ‘habits’ one had before… ah, the joys of bowels… drink loads of water nd enjoy the pretty pink wee!!
Lynn – the chap all but blushed when I relayed your comment!! He’ll be getting big headed – my secretary told him he was young and handsome the other day and he hasn’t let me forget it since!!
Best of luck to new starters – it certainly wasn’t as scary as I thought so i hope it is Ok for all of you
I was recomended Movicol for the constipation - I take it just for the 3 days on steroids after chemo, and it works well. 2 doses a day, and I stay comparitively 'normal'. After that I'm ok.
Hope it is good for others!
all the best
I just had my Epi on thursday and luckily didn't suffer either bowel prob..yahoooo well not so far. Just a bit of nausea and feeling a bit worn out but hard to tell when running around with toddler and 6yr old whether chemo or just motherhood..!!
My chemo nurse asked me what my pregnancies were like....apparently it can give an indication to how you cope with Chemo..!! Luckily mine were fab....still not counting my blessings just yet.!!
I was told to take selenuim by a breast cancer nurse but will now run that one pass my Onc...!!
Just check out that pinkish wee.....dont panic !!!
hugs to you all
I don't start my Epi until a week Friday and am still making a list of what to get. The chemo nurse said it could cause constipation or diarrhoea, and I could use any over-the-counter remedy, though they would give me something stronger if necessary. I don't like the sound of it being necessary! More terrified of constipation than the other as piles are dreadful. If diarrhoea was going to be the reaction, would lactulose make it even worse? Or just still prevent constipation, which dominated the whole time in hospital after my mastectomy. Will get ginger in all forms, biscuits, ale and wine, what about crystallised ginger, or ginger preserve? Ginger cake? Good thing I like it, I suppose! Good luck Sue and Rach starting yours this week, hope it is much less awful than anticipated. Hugs and strength to you both. Lyn xxx
Hi Ladies, First chemo tomorrow 12pm Epi. The tips for chemo are great and are helping me feel less nervous. Will try visualisaation. My white cat Ivor loves me being home too and cuddles up when i feel down or unwell. Poor OH I am foul to him at the moment ! Good luck all chemo newbies this week.
I'm to start my chemo (FEC-T) on Thursday. I've just sent the family away on holiday as I want to be alone to cope with it, although a friend is staying with me Thursday night just in case. Am getting the treatment at home - which is a brilliant idea (as long as I don't need emergency treatment - I live very rurally!) Have been buying some of the things recommended as tips, and am grateful for the excuse to indulge in Ginger Nuts! However oncologist also said to get LACTULOSE and start that a few days before treatment. Good idea?
I know what you mean, my cats are loving having me lying around so much!
I like you describing the epi as a beautiful colour. When I visited the chemo suite last week, the nurse said not to think red means blood, red means danger, just think red means love, hearts, red means roses, red means sunrise... I'm trying to learn more about visualisation and that is really beneficial - of course, the crunch hasn't come yet, but I hope these ideas will help. Perhaps I'll keep my eyes shut.
You're very lucky indeed to know what sounds like a very special and compassionate man - gives a warm and fuzzy feeling. All the very best to you. Lyn xxxx
Hey the cat always comes first and she miaows a bit but never complains when i am tired because we can just do lying down lap things!
i am lucky not to feel nauseous from treatment (and hey - he isn't that bad!!). diagnosis triggered him to say how he felt... we had been not saying anything before. So he has seen the mastectomy scar, was with me when my hair started falling out BIG TIME (a coincidence because he lives 5 hours away) and was there when i had the no2. apparently bald one breasted woman are ok... am laughing
my next treatment is last of epi - it is a beautiful colour and that is all i think when having it. i have been ok - i know people do feel sick but hope you will be ok. i just feel a bit grot/tired for a few days, sore eyes and no brain. 3 days after i feel loads better.
ps... cat will be here even if he walked!!
Lol Jennifer, I think I'll stick to being in love with my animals for now! How do you balance falling in love with nausea and hair loss???
Sue I've just put a note to you on Sharon's 'dog' thread, I love porridge and Weetabix (not together) but had thought milk would worsen any nausea - I'm delighted to think I may be able to have my favourite breakfasts after all! My Epi starts a week Friday so you're a bit further down the line. How's your hair, dare I ask...? Lyn xxx
I'm partly posting to bump this up - i wish i had had some of these tips when i started chemo - tho i loathe GINGER!!! i'm laughing... really loathe except root ginger.
I never ever thought i would look forward to a chemo sesh but the next one sees me half way through!!!! YAY!
The tip i didn't put in before was ... fall in love... umm i did and it certainly takes your mind off things!!
eal69eal... i hope first chemo is ok and u take care!!
I'll be heading off for my new chemo with cmf adn found all the tips here sooo helpful - thank you to all you folk who have posted.
I read one post that suggested Q10 - I asked my Onc about them at the start of my chemo with epi and was advised not to take Q10 or selenium as they counter what the chemo is doing. So best to check about any suppliments with your onc.
I found on epi that eating a little every couple of hours helped keep the sicky feeling away. Porrige was excellent in the morning or else cold milk with a wheatabix. Don't eat too many of your fav foods when you feel sick - otherwise you will go off them!!
Sleep is a great tonic - plus you dont feel sick when you are fast asleep!!
good luck everyone...
Just wanted to thank everyone for taking the time out to write those tips!. Am a chemo newbie about to start next week. Nervous as hell but have just been to Boots to stock up on some of your suggestions and suddenly I don't feel so bad. I feel a bit more in control and prepared and lets face it, control is not something I've experienced much since I was diagnosed!. Thanks again guys.
I have manuka honey off spoon on cereal or in nat yoghurt.
My hospital provide the ice lollies so I just suck on them with the sweets and drink loads of water, it helps with taste and washes chemo out of body.
Hiya Lynn & all,
I had ginger in the form on ginger biscuits and dry ginger ale. Both worked for me to help with nausea. Also, when I had an ice lolly as the chemo was being administered I took a little cool bag with me. My mum picked it up from Asda for me, along with a couple of ice packs. Its only a dinky cool bag, I used out mt calipo in it, in between 2 ice packs, and it would stay nice and frozen 'til needed,
Thanks Jennifer I'm focusing on it being a short time relative to everything else. I don't like feeling wingey and pathetic as I have been this cycle. I wasn't prepared for how the chemo was going to affect me. Feeling much stronger now mentally thanks to this forum and sense of humour restored.
I went to see my GP yesterday and he said to phone surgery for the District nurse for injections if I need them, after my next treatment on Monday so will keep that in mine if Marsden don't manage to improve my tolerance to sickness reaction. He had a look for bio oil on his list of things to prescribe and couldn't find it so I'm going to buy some today. The ice lollies were to have at home when I was too ill to eat and the GP suggested them as he said I'd be getting some sugar. The supermarket van has just delivered my shopping and I've stocked up on pizzas so my son can cook his own tea, poor thing. i just keep thinking it's good for him to be independent (he's 11). I've been swigging gaviscon straight from the bottle, Lyn!
Brill thread!! maybe this is the basis of a fact sheet/hints and tips from us?
I've been pretty lucky-ish with side effects - am on Tact 2 - 3rd of epirubicin to be followed by xeloda 3 weekly.
I live alone when the kids are at uni so i have found it is worth buying/making nice simple easy to prepare food in advance - sounds obvious? But on the grot days i have opened the fridge and cried at the prospect of having to do anything with raw ingredients - i am not nauseous or anything, just weary and brain not working. fruit is wonderful when you have to eat with pills - bananas count!!!
My eyes get v itchy for a few days post chemo and the airline type of eye thingy that you cool in the fridge is a real help. Since most of my nose hair departed (gross!!!!) i do really runny nose and i haven't found a solution to that except loads of tissues!! (and why - if i have to lose hair everywhere else - do my legs stay firmly haired??!!!)
I do lively in the mornings but my night sleep only gets back to normal in the week before the next chemo - don't be afraid to say you are tired and don't fret about being tired - it's dull but not abnormal. Sleep when you can - all the hosp people say it is when we heal. My sons are home for Easter hols from uni but have reacted better to me in pajamas in the middle
of the afternoon than me having a nap fully clothed - my kids are not insensitive - just seem to accept the signal better - they were brill when i had the mastectomy but uni term started before the chemo so this is the first time they have seen me feeling grot.
Sore mouth - my dentist prescribed chlorohexo gluco whatever it's called but it does cause staining v easily and it can't be brushed off. Salt water washes do help. As does tonic water when water still doesn't hit the spot. Drink loads of watery things.
Carry your card and thermometer all the time and have a bag ready with your nightclothes and toiletries, book etc. Then hopefully they will never be needed.
Most of all - stay positive. Chemo is only a short period in our lives, it will be over soon. Talk to people... enjoy life.
Hi everyone contributing to this fantastic thread! What is the best way to use ginger (hoping it'll be ither ginger biscuits or Stones Ginger Wine...), and manuka honey - on toast, or off the spoon? If you're having iced lollies actually during the treatment do you take a freezer bag in with you, or are they better kept at home to have in between treatments? I think I'm trying cold cap so the nurse said they bring lots of hot drinks. Tinned pineapple or fresh, or juice? Is Gaviscon better than PepcidTwo for heartburn? Don't actually start for another fortnight but I'd like to have everything here just in case! Your first-hand experiences are priceless, ladies, thank you so much for taking the time to remember them all. Lyn xxx
Hi littleMrs Don't think you were unlucky being so sick I was violently sick too but I did have support from District Nurse who came to inject me and emerg Doc. My meds have been changed on EMEND Now and that seems to have worked so good luck for next time maybe it will not be so bad. I know what you mean about Ginger I cannot face it now either!!!!
The Manuka honey is also on sale at Morrisons, Tesco and Sainsburys where it is a little cheaper.Try Zinc and Q10 they also help boost immune system.
Mijam, do you know if it's possible to get a percription for bio oil? I've seen bio oil in my local chemist but as I've bought a 12 month pre pay percsrption (spelling? can't get it right brain seems to be switched off today) thought I could ask GP when I next see him.
I know i was unlucky in being so sick after my 1st chemo but another tip i thought I'd pass on is that I was pleased I had a small bag with toothbrush, moisturiser etc left packed from a weekend away that i shoved in my handbag on my way to A&E. Proved useful when I had to stay in overnight. Lots of other tips have been very useful except now can't face ginger or the smell of ginger or even when feeling especialy queasy the thought of ginger!
Thanks for checking in! I'm ok-ish after surgery - 3 weeks tomorrow, recon breast still feels full and hard, and a little sore. My tummy is tight and the muscles either side contract whenever I change position, a bit like mild labour pains. Not painful, but irritating. The worst bit is definitely the underarm - the scar from the SLNB is sore but the lack of mobility in the arm is getting to me. I do the exercises but presumably not well enough, for the last week I haven't increased the height I can raise that arm to. No sign of cording yet but the armpit pulls so tight and is really uncomfortable, however slowly I try. Grrr.
I've been given a sheet of statistics advising me to have chemo, then rads and tamoxifen. I see the oncologist tomorrow to learn more - I'm very uptight and hostile to anything so dramatically reducing quality of life, whatever the numbers suggest. You are lucky to feel relaxed about it, you're braver than I am. Do you know what you'll be having? Lyn xxx
Excellent advice - thank you to all. I am past my third chemo and have been using a lot of advice from this forum.
I have one more (I don't know if it was mentioned already), that my chemo nurse gave me: to avoid/minimise the plantar palmar effect (sore red palms of hands and soles of feet) after the FEC (it is caused by flurouracyl-5FU) rub in bio-oil, available from Boots, at least twice a day into the soles of your feet and palms of your hands and make sure that after every time you wash your hnds rub some good quality natural hand cream in (or bio-oil) too.
As fo headcover for the beach, look at the american website: www.headcovers.com -huge choice of head covers for ladies with no hair, fast delivery and a lot cheaper than anything I found in the UK. I think they have nice swim hats with flowers or you may find a nice tight fitting cotton turban style hat, that will not come off in the waves.
I am off to buy Manuka honey and Aloe Vera toothpaste tomorrow. Also was suprised to find out that it is easier for me to drink carbonated (fizzy) mineral water than the still water - so thanks for the advise again.
P.S. I forgot to say that I went to see the headstrong ladies and they showed me some buffs which are GREAT. I've bought some via the website and my teen daughter wants them when my hair has grown back. The only problem the lovely ladies couldn't solve was what to wear in the sea. We have a Cornish holiday booked which I am determind i will get to and as we spend a lot of time on the beach and at the Penzance lido i wanted something that would protect/cover my bald head but would stay on in the waves. Any ideas? Other wise I'll be the one in the wet suit looking like a pale walrus.
I haven't been on here for a while as my 1st chemo laid me so low I've taken 10 days to recover. Was very very sick and ended up in A&E. i've been reassured by the IV team at the Marsden ,Sutton, that when I come to clinic for my next treatment they will sort out different anti emetics. I'll have to put my faith in them but am a bit worried as promised help/advice at home was inadequate. The problem was I needed anti emetic injections and had to wait 3 hours each time for drs to come to house. Eventually I managed to speak to a sympathetic GP who prescribed some spare ampoules which my partner could inject (he's a nurse) but I do understand that this is a risk for the GP to take as he only has my word that my partner is qualified and if some thing goes wrong Dr takes the blame. I went into the chemo very innocently thinking that I'd be in bed for a couple of days feeling as if I had a bad hang over. Luckily the experience seems to be fading rapidly from my memory otherwise I don't think I'll have the courage to turn up for my next appointment. I've booked up for hypnotherapy to try and help myself but can't start this until May. I still feel very weak and only ventured out briefly yesterday for the 1st time. Is this normal?
I'm not used to being so dependent on others. Cliche of you find out who your real friends are has proved true as I have been very lucky with the amount of help, support and meals that have been given. I've made myself say "yes please" when my instinct is to say "we're OK thanks what can I do to help you?"
To return to the theme of the posts the best advice I was given was to have ice lollies in freezer (once i could keep anything in my stomach) and a hot water bottle was a great comfort. I moved the radio from the kitchen into the room I was sleeping in . No i don't live in a many bedded mansion my eldest child is a way at uni! The radio burbling away in the back ground was a great comfort as I couldn't read and day light hurt my eyes. Also the thought of ginger now turns my stomach as did try this when I first got home from the Marsden.
Hopefully my sense of hunour will get me through. I knew i was improving when i could laugh about the confused nurse in A&E asking if I had had my masectomy due to large seroma which looks as if i'm growing a new breast like a starfish.
Thanks for reminding me about Manuka. I've got 2 jars of the stuff and was taking it prior to my op to get my immune system in tip top condition, seemed to work.
I'm probably going to end up having chemo too so I shall get back on to the stuff ASAP. Even though I don't see my onc for another month no harm in being fit is there 🙂
Just driving home I had a flash, I need to get myself some buffs. I love those things in the summer when I go hiking. I would trade any wig for half a dozen of those they're so funky, warm and you can wear them so many ways. Great for those of us who are younger. Buff and a baseball cap for me.
How are you doing after your surgery? hope you are pleased with you reconstructions.
like me,you are getting ready to have chemo, and looking at the "Tips".
Have you actually seen your oncologist yet? I'm waiting for my appointment, because she is away on holiday this week.
i expect to be starting chemo in April. I've started a new thread called "getting my head in gear" on chemo discussions.
I'm starting to feel more relaxed about the chemo, although on the first day I may be very nervous.
Have a good weekend.
take care, Ann (hug)) x
Fantastic tips. I have had my second FEC chemo and am feeling ok apart from heartburn and a bit of constipation which a sennekot tablet put to rights. I was really dreading side effects but so far so good. I am lucky having loads of support from my big family and friends, plus two lovely new baby grandchildren who bring me so much joy.
I have heard from two different people that Manuka honey (from Health Food Shops) keeps blood cells stable (something about white cells) There is a lot of research on this honey which helps stomach problems and when I had a slight sore throat a couple of teaspoons got rid of it! Its not cheap but good stuff. Also good for wound healing. No I am not an agent just an enthusiastic consumer!
All the best to you ladies, it is reasurring to know we are not alone, as it is very isolating when all ones friends are so well. This is a disease that I have always dreaded but I am coping well and I think this site is wonderful.
Lots of hugs and all good wishes to all of you.
Hoped I wouldn't be looking at this one but hey-ho, if the conslt has his way I'm going to be glad of it. Well done for preparing such an incredible list, this site is a real godsend.
Love, Lyn xx
thinking of you littlemrs.
I'm starting my first chemo tomorrow too. I 've found the advice here really useful. Have my soft toothbrush, baby hairbrush and digital themomiter all ready. Going shoping later for ginger biscuits, and a nice new pillow for my bed, Can't be prepared for how I will feel so I guess having the house clean & tidy is as prepared as I can ever be. I hope my teenage daughters and OH remember how to use the washing machine & dish washer, I'm just wondering whether to put "post-it" notes up everywhere!!
I should be getting ready to go to hospital for heart scan before starting chemo on Monday 10th but it's been worth making me late to read all the advice on here. I feel a bit like i'm steping off a high diving board into the unkown as i don't know anyone who has had chemo in recent years. These posts have helped me as lot with ideas. Love the idea of a basket for post chemo days (sorry can't remember who wrote that) will be finding a little bell to summon help/tea. My kids will love that if they can unplug themselves from ipods, games machines, mobiles! Must send partner to shops with list. Don't have time to go myself as too busy going out for lunch, visiting my mum etc while i feel I can! A big thank you to everyone who has contributed as a newbie it has been very comforting to read all the ideas and tips.
Love littlemrs xx
did they go ahead with your chemo ? Ive had 3 sessions so far and the first two had to get antibiotics to clear up infections... they work pretty quickly... hope all is well with you..
Found Chlorhexidine Gluconate Mouth Wash in a shop called Home and Bargains for Â£1.99, a real bargain for those of you who have sore mouths.
Have just read all your tips and comments and think the're brilliant, thanks, and will definately go out and get some of the things suggested. I start my chemo tomorrow (4 x EC, 4 x Tax) although now come down with a cold and not sure if they will still do it. Does anyone know if my cold could stop the treatment as I'm anxious to get it started so I can get this thing beaten!
Hi , I have decided to go ahead with chemo ( was really against it to begin with) I'm really scared but find comfort reading all the great suggestions.Has anyone heard of whitecliff.. hair replacement devices? Different to wigs!
I got Ranitadine(really strong gaviscon) from my GP for the chronic heartburn I suffered during my chemo - still take them occasionaly. Another tip I'd give to people who have lost their hair - a bath pillow as you dont realise how cold a bath is on your head untill you are bald 🙂
I had a really bad headache after my first FEC, I bought some cooling Gel pads from Pounland lay in bed in the dark and quiet and found this helped a bit.