Oh trumpet, thats awful, I hope you are starting to feel better. Its really worrying, the infection thing - I have taken my temp every day since chemo, just to be sure - just feel better safe than sorry.
I shaved my head tonight - well, I did the front and oh did the back. I was so upset with how it was coming out - I had all these tufts all over and it looked terrible. Looks much better now. I have put the cream on that gives you a light tan, so it gets near the colour of my face. I am just faffing about, trying to make it all OK.
hope you are all doing OK and feeling well
love monica xxx
Hey Trumpet,
Glad you are feeling better, that’s really rough and horrible timing to co-incide with your first chemo.
It’s tough but you have to keep telling yourself that the chemo is helping you, it is a pretty brutal way of doing it but it’s there to zap any remaining cancer cells and to help you live a full life.
Hopefully the remaining cycles will be uneventful and you can get back to work and going out and about.
Keep going and take care
Veggie
Hi Trumpet, glad you’re feeling better. I started my FEC 12 days ago already with sinusitus and on antibiotics so I had this feeling of doom to start with, but I was fine, albeit with the standard side effects.
Mostly I feel fine now, although I still have a mouth full of ulcers and I can’t taste salt - which means savoury food just seems a bit tasteless - even marmite tastes of nothing!
No sign of my hair going yet though… I think I’ve probably got till the weekend…
Wherever that place is that gives massage and ice lollies with chemo - I want to be there!!! No such luck where I am - all crammed into a small room - busier than Picadilly circus at times.
Hey Leucite
Doesn’t everyone get a nice wee Alternative therapist & an ice lolly to help soothe their mouth during chemo? I thought it was the norm!
I must be lucky that the Oncology unit here is relatively small, so maybe not as busy / hectic as where you are.
I’m with you on the whole mouth issues! My tongue feels like I’ve had the carpet fitters in & is covered in a white fur…EUGH! The only foods I can taste are sweet things (there goes the waistline!), everything else is very papery / lardy tasting. Spoke to the lovely Onc Nurse today…who apologised for making me ill! LOL, but says the only thing to help is to drink more fluids & that should help my tongue, but won’t do anything for the tastes!
Will this really last the whole time I’m on Chemo? I can’t imagine not being able to taste any of my meals for 6 months or so! Has anyone any reassurances on this?? As much as I love cinnamon & raisin bread, sherbet Lemons & scones with Jam I really don’t want to live on them!
Hx
Wow Trumpet, you sound like you’ve really been through it! I checked in each day to see if you’d made a post and was a bit worried when there was no sign of you. Hope you’re feeling perkier now? Have to say that I’m feeling a bit daunted by the whole thing at the mo - although it sounds as though you had some really good mdeical support. I start on Monday, gulp…
I’m so impressed with the way that everone sounds so perky on this thread, even though you must all be feeling pretty pants. There can’t be many times you’d see reference to Marmite, shaving your head and having a furry toungue all in the same place.
Keep the perkiness flowing folks, you’re all shining lights of inspriration. Hope I can live up to it once I start on Mon 
Lotaslove
xxx
Hello All
Thought I’d share my experiences so far of Chemo, I’m on day 13 of cycle 1 and I think I’ve gotten off lightly. I’ve had the cold cap and my hair at present still is holding on, although my scalp feels slightly itchy and tight but hoping the c.c had done the trick and I might keep my mane!!! Had nausea for the first 4 days with the horrible mouth tastes (furry upper palate as well) and a bit of a headache, but other than that no bad S.E’s, if I can get away with this every 3 weeks I’ll think myself very lucky.
Tonic water I’ve found is good as the tap water which I don’t normally have a problem with made my mouth taste strange, also had a hankering for salty snacks such as crisps, just ate light for the 1st 4 days after Chemo then managed to eat ‘normally’ again, even had a couple of glasses of vino (although again tastes slightly different to normal).
I’m starting a manicure/pedicure course at the local college to keep me occupied over the next few months as I’m presently not working just to keep my brain ticking over, don’t want to become a slave to the the goggle box.
Good luck to all those recently started on Chemo, hopefully the next few months will go quickly and we can enjoy our Christmas Chemo Free!!!
BFN
X
Hey trumpet1
How are you feeling now? I have my first FEC session Thursday. Still undecided on cold cap as it looks quite uncomfortable! I have an appointment with the wig/hair lady before my session so it’s all go and my feet haven’t touched the ground.
What is happening re your fertility and chemo? Did you have time to do anything before you started?
R
Hayz - lol at the carpet fitters getting hold of your tongue - that is just how mine felt! I told the doc at the hospital who looked in my mouth and said … mmm see what you mean (very encouraging!). I felt like I needed to scrape it all off but when I took my electric toothbrush to it it hurt like hell so I stopped that one quick. The Difflam mouthwash also hurt like hell, the only thing which has helped with the ulcers is adcortyl gel which feels like dollops of wallpaper paste covering the inside of your mouth, but at least stops the pain.
The fur and ulcers have just about cleared up but taste still a bit lacking. I can still taste sweet things so tend to keep eating sweet stuff - I now can’t get into my fattest of clothes - it’s very depressing and I really can’t blame it on the steroids - I’m just eating far too much junk and not doing any exercise.
Has anyone else tried to do any exercise? I tried cycling up our local hill today and although I did make it (albeit in granny gear) I felt like my heart was pounding right out of my chest. I’m not feeling tired or fatigued but I can’t have lost all my fitness in two weeks, surely? Perhaps it’s the low blood cell count which I should be having at the moment - anyone else found this?
I’ve also just discovered a whole list of things I shouldn’t be eating … ooops… probably should have read that before I started the chemo. Oh well, I haven’t died yet, despite being bitten by the neighbours guinea pig.
I have just made ten jars of blackberry jam which has failed to set - anyone fancy blackberry syrup to ease those sweet urges or to cleanse a furry tongue? Could keep me going for some time. Perhaps I should market it as a chemo follow up drug.
Keep those chins up - perhaps we can laugh ourselves to Christmas… got to be better than five months of crying.
Still waiting for my hair to go… day 13 and no sign yet. We put my wig on the OH on Sat and told the kids his hair (he’s bald) had regrown overnight - it was hilarious - kids can be so gullible! At least we can all have a good laugh about it all.
good luck all
Helen.
Hey Reemie
go for the cold cap - it’s not that bad and if it works you’ll know by the second treatment as to whether you need to stick with it. I think it’s worth it for a cold head on the day - after the first 15 mins your head goes numb and it’s not so bad.
good luck
Helen.
Can I have a pint of blackberry syrup please Helen? Sounds delish, even though it isn’t quite what is should have been
I’m interested to know what you shouldn’t be eating – how did you find out there were things not to eat?
As for exercise…I’ve got an indoor bike and have been using that for ten minutes in the morning and fifteen at night since my surgery, in the hope that I’ll be able to continue with some sort of an effort whilst having the chemo. Will let you know how it goes, but I get the impression that like food, little and often is the way forward. Hope you’re soon flying up the hill – LOL
Interesting about the water Poppet, you wouldn’t think it would make that much difference. I have heard that drinking coke (heaven help us) reduces the residual taste that comes with oral fluorouracil, so I’m going to give it a whirl even though ours is IV – gotta be worth a try, hasn’t it?
Good luck tomorrow Reemeichick, hope that you get on OK, and that your first experience is as good as it can be.
May your fur on your heads and not in your mouth
Lotsalove
xxx
Loocie
Thought Id add my bit too. Sounds like a good thread
Dont worry about your 1st chemo tomorrow - so far things have not been as bad as I thought they were going to be.
I agree with poppet. Definitely use the cold cap - its not nice for about 10 mins and then for some reason it goes ok and feels just like you’re wearing a normal slightly tight fitting hat.
I go back for my 2nd cycle of EC this Friday After the first lot I had one day of sickness, a few days of tiredness and not really wanting to eat anything but plain food for a week but after that I felt absolutely normal and returned to work a week after my 1st chemo session working my usual hours. Strands of my hair are coming out in very small amounts and I have seen thinnning in other areas too but no-one else would notice & I would say the cold cap has worked.
I think i have been very lucky too so far! Just hope the rest is like this.
So good luck on Monday. Take your nintendo or something - it could be a long day!
Paula
Uh oh… day 14 and the hair loss has started. I can now pull out the hairs on my legs and other nether regions without any pain. Not that I normally do this, I would hasten to add, I was just testing… I’m leaving my head well alone, nothing really has fallen off my scalp yet, here’s hoping.
I found the list of forbidden foods on a leaflet from Wessex Cancer care. It’s basically like a pregnancy diet - no unpastuerised cheese eg parmesan, no ice cream from machines, no rare meat, no pre-washed salads, no takeaways, no reheated rice etc. etc. I’ve probably eaten all of that in the past two weeks and haven’t suffered so far. But probably we should be sensible about what we eat.
Went to the gym for a body balance class this morning which was great although my heart still pounds if I do anything too strenuous, not sure if it’s anxiety or something more sinister.
Someone told me yesterday that if you eat ice cubes when you are given chemo it helps against the mouth problems, much in the same way that the cold cap helps against hair loss. Has anyone else heard this or tried it? Not sure I could sit there for four hours freezing my mouth and insides as well as my head but I’m prepared to give it a chance if it might help against further ulcers.
Anyway, back to work. I’m trying to work from home doing some CAD drawings but I must say the motivation levels are very low.
Helen
hello
sorry been quiet for a while was tired and a bit sickly for last couple of days but found out today neutrophils too low for chemo no. 2 so now I know why!
having said that, was able to do a bit of exercise last week on treadmill, and also had lovely walk up our local hill on Saturday - not a big hill, but I can remember a time when I couldn’t get up it without stopping.
take care - hope things keep going OK with you all
love Monica x
Hello all,
I am having my 1st chemo tomorrow and feeling absolutely terrified, so thank you I found it reassuring to read your bloggs. I had my picc line inserted yesterday so hopefully that may somewhat ease tomorrows chemo session. I appreciate that everyones experience is different and that no ones cancer is the same, but does anyone else feel so so frightened for their future? I am unable to be positive anymoreand my fear is becoming all consuming; being so doomy & gloomy is incredibly hard not only for me but for my wonderful husband as well.
Thankfully my daughter went back to uni today, I didnt want her to be around to share this incredibly tough journey with me i desperately want to protect her from as much of this as possible.
I am seriously considering councilling as I need to be more optimistic in my outlook, is there anyone out there who has tried it?
Sorry for being such a misery guts all.
With lots of love and best wishes to you all.
Stella
Hi Everyone,
Sorry am bad at remembering everyones’ names!!
Am feeling much better now thanks, went out for a pancake and a milkshake tonight, it used to be 10 vodkas but thats how life can change!!
Definately try the cold cap, we timed it and after 8 minutes you can’t feel it anymore, it’s not that bad although you feel stupid wearing it. Day 9 and no hairloss anywhere, i keep checking!
Thanks for asking Remmiechick, i didn’t do any fertility stuff in the end, didn;t want to risk anymore hospital stuff and have never been that desperate to have children. I just hope i don’t get desperate.
Am very envious of the whole ice-lolly/Massage thing, i got my drugs in the upstairs of a derelict building as the multi-million brand spanking super dooper cancer building is being built and finished just as i finish! The cancer could have waited !
The taste thing is a real pain, eating is one of the only pleasures and that is strange! I used to drink loads of tea but can’t drink it now. Am drinking loads of hot Ribena (so that blackcurrant syrup could come in useful). Are there things we shouldn’t eat i didn;t know this!!
Keep checking those temperatures and sucking sweets !!
xxx
Stella,
Don’t worry too much about it, it will be over very quickly and you will still be the same person after they have done it. You will be fine. It is a terrible stressful time but we just have to make the best of it i suppose!!
Good luck tomorrow and let us know how it goes!
Be calm and determined!
xxxx
Hi Stellam
sorry you’re feeling so bad and a bit terrified - I was pretty scared for my first chemo but it wasn’t that bad and if you have a PICC line (I have a Hickman) then you don’t have to worry about the needles and the nurses searching for a vein - it’s a lot less hassle and safer, too.
As to feeling gloomy, well breast cancer isn’t a death sentence any more and really the outlook is very good, particularly if you take all the treatments they offer, and even not that bad if you don’t. If you have a primary diagnosis then I think the outlook is very good. If you have secondaries then I think things are different and if that is the case perhaps you should get some counselling or speak to the nurses on the helpline or the people on the secondaries forum. I am having chemo as an optional choice to make bloody sure I don’t get secondaries - maybe you should look at it like this too.
I am 43 and often feel a bit young for this disease, particularly at the support groups and the chemo ward where I don’t think anyone is under 70! I personally am fully intending to still be here when I’m 80, wearing purple and getting a geriatric asbo for annoying the neighbours with my partying.
My only regret is I don’t have children and certainly won’t now the chemo will push me into the menopause - I think my ovaries are fighting back at the moment if my PMS style breast pain is anything to go by. Just as well I don’t get full blown PMS mood swings etc as I think my OH would have to move out over the next 5 months rather than live with that!
I hope you feel better once the treatment gets underway and it becomes less frightening, good luck with the next few days as you’ll probably feel a bit grim, don’t worry, it doesn’t last for ever.
On another note, I remade the blackberry jam with added lemon and it has set this time! And the hair is still holding in there… on my head anyway.
Sorry you’re feeling under the weather, Monica - did that just happen that your bloods were too low? What did they say about dealing with it or do you just have to wait another week?
all the best all, must go and do some work
Helen.
Hey everyone!
Trumpet, I’m glad things have picked up for you…right now I’m about ready to try 10 vodka’s just to see if they help! LOL
I’m on day 7 now & my skin has broken out, making me look like a teenage boy with the most horrendous case of acne! I was hoping someone else has experience of this as a side effect??..and can offer a bit of advice??
I still have underlying nausea, but it’s the type where you feel like you’ll be better if you eat…so you do…and you feel better WHEN you’re eating, but go back to feeling nauseas as soon as you stop…so the cycle continues! I’m gonna be huge by the end of 6 months chemo if this continues!!
Can you tell today is a bad day?? LOL…I’m so trying to stay positive & this wee thread is helping. Everyone is in the same position & it really is a boost to know that I’m not alone. Being 35 with Breast Cancer is tough to deal with (especially with a 2, 5 & 9yr old!)but I’m sure that if I can deal with 3 noisy, messy & stroppy kids on a daily basis I can beat this crappy disease!!..we ALL can!! :o)
…and talking of my kids…my 5 year son old climbed up on my knee last night & said ‘Mummy? If the Doctor wasn’t going to give you two boobs why didn’t he move that one into the middle so your pyjamas would sit better?’ …now why didn’t I think of that?? PMSL! If it was only that simple!
And my 2 year old daughter thinks that my Boobie was put in the bin because it was out of date!..and keeps patting my shoulder & telling me ‘never mind Mummy, when your cut’s better the Doctor will stick a new Boobie on’!! …no 10 hour op required in her world…just some superglue or sticky back plastic!! LOL
…never a dull moment with my lot!
Anyway, Good Luck to All…keep those chins up!
Hx
Hi Trumpet1
Thank you so much for your reassuring words, my chemo is at 2.45 this afternoon. I will keep you all posted.
Love to all you lovely strong ladies
Stella XXX
Hi Helen
Thank you so much, you have really helped to reassure me.
I do appreciate that breast cancer isn’t a death sentence any more the outlook is pretty good, I do have a primary diagnosis, with 2 in 11 lymph nodes affected. I had a quadrandectomy on the 10th Aug and have healed fairly well. I totally understand you feeling too young at 43 to have this disease, I am 43 as well and yes when i went to see the chemo ward everyone certainly looked older! I love your spunky fighting attitude Helen, you make me feel like a real wimp and I MUST pull my socks up and stop my whinging. Hopefully I’ll be able to join you at one of your parties.
Double trouble! geriatrics in their 80’s, what a thought.
Love to all you amazing women.
Stella