Glad it’s all a bit better 2nd time round for you…I’m on day 7 & my nausea / icky tummy is still very much present!
I’ve had enough now!!..not quite sure how I’m gonna drag my butt back for rounds 3 & 4…roll on Taxotere…pain I can handle…nausea I can’t! …funny how negative we get & then we forget & it’s all sweetness & light again!! PMSL!..can’t wait until this all passes & I can tell everyone how Chemo is no probs…it’s a doddle!! ;o)
…think I’ll nip off up to the shops & get myself some travel sickness bands…anything is worth a try!
I tried the seabands but didn’t find they made any difference, other than giving me really sore muscles in my hands. Still, I’ll keep them on just in case they do make a difference. I’ve been trying to find someone who will do acupuncture and hypnotherapy in my area but can’t find anyone prepared to do the sickness bit - they all do pain relief only. Not very helpful. I might ask about that wonder drug you are all talking about when I go in next week. I’m currently enjoying my good week - isn’t it easy to forget the horrors of SE’s when you don’t have them?
Still got my hair… surely it can’t last much longer! I have not washed it for five days and after the first two/three days low and behold, the greasyness has gone! I’m amazed - all they say about if you don’t wash your hair it gets its grease balance under control is absolutely right. This is from someone who has washed her hair religiously every day and sometimes twice a day to combat the grease for her entire life. The only problem is I can’t use any sort of hair products so the hair is a bit of mess lol. Not sure I can really do the next four months without washing it - can’t imagine what might be living in there by Christmas, but I’m certainly not going to wash it as often as before. Fingers crossed that it all doesn’t fall out this weekend.
Hope all your SE’s wear off quickly (I’m dreading next Thursday already)
Hi Hazel,
Hope the nausea/morning sickness feeling gets better soon.
I echo your sentiments entirely…can take pain more than nausea, and can eat better than drink fluids!! I also agree with the negativity bit when you feel rough and then when feeling better it’s really not so bad… bit like having a baby, awful at the time but you soon forget the agony etc.
Must have definitely got chemo brain - after having a shower this morning can I find where I put my travel sickness bands, NO (can’t believe it after I was just saying that they are pretty good). We have hunted the house down but they have mysteriously disappeared. I’ve even looked in the fridge!!OH off to Tescos now to get some more LOL.
Lynn xx
Lynn - are you sure you’re not wearing them? Lol- that’s the sort of chemo brain moment - like when you’re looking for your sunglasses to find they’re on the top of your head!
I hunted for my car keys this morning…for 20 minutes!! …where were they??? In my hand!! I even put them down to check behind the cushions on the couch & picked them up again & continued to look!! It wasn’t until my 9 year old asked what I was looking for & then began to double up with laughter when I told him (and of course I lost the plot…‘It’s not BEEPING funny’!!) that I noticed them! Oh Dear!
…and even better!
Couldn’t find my 5 year olds reading folder for school. I knew we’d had it home because I remembered having it & doing his homework just before we had tea the night before…you all know what’s coming don’t you??!..my OH found it in the OVEN!! OMG!! I must have switched it for the chicken nuggets!! LMAO! Just as well I remembered to switch the oven off!
Chemo Brain sucks! I’m only 35 For Goodness Sake! But I s’pose at least it’s giving my kids lasting memories of Mum!..and my friends a right old chuckle!
I just hope it passes along with the nausea!
Hope you all have a fab day…from a Bald, One Boobed, Brainless
You did cheer me up today - the reading folder in the oven was fab! Well after losing my travel sickness bands (yeh and did check my wrists about 10 times just in case I was wearing them) and the OH getting more from tescos I found them this morning on the sink in the bathroom - I know I had looked there. Must have just stared at them but brain not registering LOL. I’m not sure they really work but if they are doing anything at all by placebo that’s good enough for me. Probably just gullible.
I’m looking rather attractive today - NOT… in my fleecy ski hat looking a bit like a smurf as my bald head is so cold and the scarves I bought from Claires are just too big. On the net searching for more.
Ditto ditto chemo brain and nausea passing!
Hope you are all doing ok.
Lynn xx
Hee Hee Hee - you guys Are so funny! I put a bar of nougat in the fridge And wondered where it was, but that’s little league compared to your antics. Keep it up, you’re making me smile ;0
I resemble a Christams tree on boxing day at the mo. One puff of Wind, a quick turn of the
head or a sneeze, And another bunch of hair goes. I did manage to’ get it trimmed without loosing too much which is great as i’m out for a meal tomorrow And wanted to wear hair! Having 2nd FEC Tuesday And will be’ concentrating on beating up the side effects to’ worry about my hair.
Isn’t it gross how far it goes? I went to’ work for a couple of hours today And as i picked up some papers i realised there were a pile of my hairs on them. I excused myself to’ the person Who was in my Office And when i related the story to’ someone else later they just laughed And said that next time they needed me, they’d just follow the trail of hair! Would have been funny if it wasn’t so near the truth. I did wear a sleep cap in bed last night which stopped me waking up with a furry pillow, And was snuggly warm :0. Was also impressed that it stayed in place and that it didn’t swivel round in the night And suffocate me.
Gonna have a bath And watch rubbish tv whilst snuggled under the cat. Got the red wine breathing And the chocies on standby… Nightee noo to’ ya all xxx
ps excuse And - keeps coming out capitalised…not sue why?
Hilarious Hazel about the reading folder. What on earth did the OH say? And the keys too. Unfortunately I do that sort of thing with my keys all the time - before the chemo, so can’t blame it on chemo brain, just me being disorganised! I have found the chemo brain wears off along with the side effects so at the moment I am feeling as though my brain is working - not sure the OH agrees!
Loocie, I can just imagine you rotating in bed and your cap staying where it is over your face… Just imagine - your hair makes perfect nesting material for birds - just as well it isn’t nesting season or you’ld have a flock of birds around your head waiting for your shed hairs.!
Just as well we’ve all got a sense of humour, isn’t it? We need it to get through this thing.
Had a brilliant weekend in Cornwall sickness gone and even had some cava…
Tues my sore throat had got worse and hair was definately shedding. More ulcers appearing in mouth and felt terrible - rang chemo nurses they advised me to go to GP. Got kiddies fluid antibiotics and mouth watering spray. During the evening I got feverish and temp went over 38 so rang emergency number (cancer ward) they were full up and advised me to go to A & E for assessment - great support there.Did not want to go to A&E and wait hours and OH had to go to bed as he had to get up at 4am. Took paracetamol and temp came down a bit. Then told to ring ambulance my reliable source and that i could die from neutropenic sepsis which paracetamol would hide!!!
I rang for an ambulance as OH did not stir and they got a nurse to ring me back and asked loads of questions - She thought i would be ok to wait to morning but she would get a doctor to ring me within 2 hours (now 10pm). He rang at 11pm and was dithering about what to do - I told him I was anxious about NS so he said he would go and ask A&E doctor - came back and said he was calling me an ambulance!
Got poor tired OH up and he followed ambulance to hospital arrived midnight - Triage nurse said wait was 2-3 hours - I showed her the Chemo ALERT card which states full blood count test must be done immediately and I was then taken through to a bay. Test done quick but results took another 2 hours. They put me on a drip, gave me paracetamol and said i was neutropenic - i asked when i would get intravenous antibiotics and they said they were still assessing me. Admitted to Emergency Assesment Unit at 3.30am. All ablur for a while but Consultant came round with a team of trainees @ 8am (just like ‘doctor in the house’ and she proclaimed I had toncilitus and thrush in the windpipe - prescribed nystatin fluid and a tablet. More blood taken for blood cultures - terrible bruising and lump on hand. At 10.30am they announced I was being transferred to cancer ward and put in isolation as I was at risk of further infection - they said I was NS but not inflammatory, so treatment would be prophylactic, to avoid complications and moving to dangerous phase. All very scary. Stayed in second night did further bloods and neuts had gon from 0.8 to 1.5 so told I could now go home but ad to wait for doctor and then for medication. I had allergic reaction to something while in hospital so they gave me antihistamine to take if happened again. In the evening I took next augmentin (penicillin) and soon after al over itching started and palms of hands turned bright red, i had to take the antihistamine and then had a reaction to them - exreme exhaustion/tiredness - had a very deep 8 hour sleep (unknown of for me) and I wole up very very groggy and triple chemo brain.Rang my onc and he has declared no drugs to pass my lips etc for a week and delaying my next FEC for one week to 20 Oct at a lower strength than the FEC 100 i was on. I will also have the stomach injections to stop this happening again. Hopefully I will be able to recover over the next week.
Sorry so long winded but please go to hospital if you get a temp over 38 and do not take paracetamol to lower it artificially (i also used a cold wet flannel and went outside in the cold to cool down.
Hope you are all feeling better after second doses and ladies due for first this is not the norm - just an extreme to be aware of.
Lynb xxxxxxxxxxxx ps hair came out rapidly while in hospital and am now almost bald on day 18! my onc did not believe it as i had loads of hair when he saw me in the ward on Weds!!! Hane a wig called ‘Lina’ in colour ‘fireball’ appropriate for me still smiling.
I was just off to bed but I saw what you have been through…You poor thing, what a rough time you have had and being allergic to the antibiotics too on top of everything else! Hope you are starting to feel a little better. I must say I haven’t been given a chemo alert card so I think after reading this I perhaps ought to get one!
Just visiting your page Gemjunkie sorry to hear you had such a bad time. I had WLE, full lymph clearance,4 Epi had 5CMF ,3 more CMF to go.
Been lucky no sickness but not on steroid tablets don’t know if that
makes a difference on Epi you will loose your hair, cool cap not recommended by onc nurse doesn’t really work and you lessen the chances of the chemo working there by 5% not worth it your will start to regrow as soon as you stop the Epi.
Mouth ulcers Nystan liquid is great I have now been given calcium
folinate which i take 24 hrs after chemo had no mouth ulcers since
starting both i get from chemo dept.
Lots of water and something in your stomach before chemo works.
Pineapple good for dry mouth but if bad not a lot of saliva ask for
Glandosane a spray for dryness of the mouth.
Hope this helps anyone
I am feeling a bit better but the chemo brain seems to have got worse - dizzy and drained etc - you all know the routine. I am so glad to be getting a weeks rest from the crap but am dreading the next one.
Lynn we should all have the alert card - in case you are admtted as an emergency (possibly delirious with fever) if your temp ever breaks 38 you need to be seen quickly as Neutropenic sepsis can be life threatening. Luckily my neuts were not below 0.50 which is real danger time - any normal infection would be far worse.
Yvoyvo
Thanks for advice. How strange that we are given different drugs/advice from chemo nurses - most people seem to have steroids - the nurse told me they were anti-sickness. I was taking them all together as it said take 3 in the morning - but other people space them out a bit. Why don’t you have them? Got the nystatin liquid in hospital, think that worked well for the thrush/fungal throat. My gp gave me the glandosane spray which helped with the ‘waking up with dry dry throat and mouth’. I have difflam mouthwash which helped with the horrendous mouth ulcers.
One thing that no one seems to have a cure for is the painful scalp - my crown is so sore now but I am determined to not even take painkillers this week. The hair loss was worst on Thursday - Fri and Sat just lost a bit more - the beret is covering the baldy thin areas and I have little dry wispy bits sticking out now. The wig is not trimmed yet and my head is too sore to wear it anyway.
Is everyone else still there it seems a bit quiet on here lately xxxx
What a nightmare you’ve had! I’m glad to hear you’re feeling better now.
Think it’s a bit quiet on here cause everyones not long had another wee dose of the lovely Chemo juice and we’ve all be in hiding!
I was given a wee booklet with all my instructions in & if my temp reaches 37.5 I’ve to get oral antibiotics & if my temp ever hits 38 I’ll be automatically admitted & given IV antibiotics. Was also left terrified to take paracetamol incase it does mask any temp increases!..funny how things differ between hospitals!
Re the Chemo Alert Card…I don’t have one of those either…but maybe I should have one to hang round my neck just now!
Think mine should be something along the lines of -
CHEMO ALERT…steroid induced munchies will result in wearer eating you out of house & home…if wearer looks bewildered, please gently remind her of who she is, where she should be & what she should be doing!..if cheeks are flushed &/or nostrils flared mood swing may be in progress. If this is the case…RUN!!!
LMAO! That about sums me up at the moment! I’ve put on half a stone in a week!! YIP a WEEK!!! Aargh!! Buddha definately describes me to a T!! I’ve felt so crap that I’ve barely moved other than to get food to stop the nausea (which only dissapears while I’m actually eating!) nightmare. Thankfully I’m starting to feel a little better now…actually had a wee girly night tonight WOOHOO!..felt human again! I’m gonna spend the next 2 weeks on salads, doing sit ups & running my wee butt off on the cross trainer! No wonder Chemo makes you fatigued! It’s tiring trying to keep the weight off!
Anyway, hope you’re all having a fab, side effect free weekend!
I’m off to bed…hopefully I might get to sleep sometime soon!!
Gosh, LynB, I’m glad you’re still alive after that lot! Hope you’re feeling better and it doesn’t happen again.
I don’t have a chemo alert card but have been given strict instructions to call the chemo ward or go straight to A&E if out of hours if temp goes above 37.5 for more than an hour or immediately if over 38. And not to take paracetamol to reduce the temperature as it can hide the problem. I’m amazed, Gemjunkie, this wasn’t made clear to you - it’s really important. I’ve been told to tell them I’m a chemo patient and I should be fast-tracked through the waiting list. Not had it happen yet - lets hope it stays that way if your experience is anything to go by.
I’m enjoying my last three days of freedom before the third cycle starts on Thursday - not looking forward to that one bit.
I take my steroids for antisickness - one first thing in the morning ( I have to have it before I can get out of bed with a banana due to the morning sicknes), and one before 2pm - any later and it can keep you awake at night, apparently. If you don’t suffer with sickness then I don’t suppose you need to take them. I don’t like the way they make me feel so shaky, but it is only for 3 days.
And as for definitely losing your hair on epi - don’t believe it. Coming up to my third cycle and still have mine! The cold cap is obviously working - I have thinned a bit but still have a full head of (somewhat messy) hair. And the greasyness has gone - amazing! I expected it to go this weekend, but no. All I can say is - we are all different and must make our own decisions about our treatment with the advice from our consultants.
Hazel - nightmare about the weight. Hope you’re feeling better now. I noticed on Friday I had put on half a stone since starting chemo - no excuse other than I am stuffing my face with stodge and doing no exercise! Difficult to get the willpower necessary to eat healthily, rather than just comfort eating. I’ve had a to buy a set of ‘chemo clothes’ from Sainsbury’s to wear for the next few months - then a ceremonial burning as I get fit again next year!
anyway, friends coming for dinner, so need to get cooking.
Been playing as much as possible this week as on Tuesday I have my PICC line put in, and 2nd slice of pie. Felt all positive yesterday, but today having a bout of the colly wobbles.
I managed to hang on to enough hair to go out with last night, but this morning it is HIDEOUS! It’s thin and what’s left looks all dead - gross. Still leaving little piles about the place, so gonna go for a number 2 tomorrow! OMG, not sure that is quite what I meant to say, but am gonna leave that thought with you! Wore a buff to brave a cuppa with a friend and a quick spin round the supermarket, which wasn’t too traumatic (looked like everyone was so hung over they didn’t care about little ol me!) and guess I’ll get used to it eventually?
Off to see the onc tomoz and hoping he will give me some ant-emetics that are just that, rather the the variety that made me sick for three days!!!
Hope you’re roast was nice LynB, and that it didn’t wear you out - pleased you’re feeling better too
Sorry, hadn’t finished - waddaya mean I have chemo brain!
Hayz - loving your chemo alert idea, especially the bit about being bewildered (got me to a T there), and the fact that chemo is so tiring as you spend all your energy moving to keep the munchy weight off!!! LOL
Good luck on Thursday Helen - I’m loving your chemo clothes, and am with you on that. I had the reverse and lost loads (just about put it back on), so opted for soft, snuggly track pants and hoodies (that come down over my bum. My mum is so proud of me for keeping my ‘important little bits’ warm - like I’m 10)! So pleased we’re not doing this chemo thing in the summer, least we can snuggle up and hide in things
Think I’ve finished now…hmmmmm can’t be too sure on that, but anything else can wait til the next post - afterall you all have getting well to do. Still, this might help you to sleep?
Good luck everyone for this week. I entered phase 2 last Monday and am just beginning to feel like myself again. It is a bit like being posessed!!
Please ask for those tablets if you were ill, they do make it better!
Have also used cap twice and still got my hair, no noticable difference, will see how long this lasts for!
Making a nice roast dinner tonight to celebrate a nice 2 weeks to come!
We can do it, it’s only for now!!
Hope you are all recovering from the effects of chemo. I managed to get the Emend tablets that I wanted, I wasnt sick (thank goodness) but I did feel very very sick. Had chemo last Tuesday and still feeling yukky (still in dressing gown!) Hoping tomorrow will be better. I have to have a nurse come in for the next 5 days to give me an injection in my stomach as my immune system was low, the consultant was concerned that it was low this early on so a preventative measure I hope. Has anybody had a picc line in? I have a horrible feeling I am going to end up having one. £ attempts to get cannula this time. Very bruised now. I have read up on picc lines and it seems you are at more risk of infection. I have 2 more Fecs then 3 Tax. I will then have radiotherapy and then I will have Herceptin by drip every 3 weeks for a year. Any advice please?
Love to all Karen xx
sorry to hear about the injections because of the low immune system. But glad you got the Emend. I was going to have a Picc line in if I’d been carrying on. The chemo nurses I had liked them, especially over the hickman line as they said not as bad with infection. Another hobson’s choice?
Good luck with what ever happens… never staright forward!
Hi ladies,
Think I am being fairly lucky compared to a lot of you girls. This is my 5th day first session FEC and I can honestly say the nausea was not too bad and was gone yesterday. Am I right in thinking the anti sickness tablets are really steroids, I had no idea but whatever they were together with my wrist bands they did a damn good job. I do have a really fuzzy, dizzy head, hope that is going soon as I think it has been worse than the nausea. Please tell me it doesn’t gone on more than a week. The carpet fitters visited the other night on my tongue and I can’t say the shade they left was to my liking!! My head seems to be covered in spots and I have one on my nose which my OH is calling my on/off button. Don’t you just love the sympathy. One daughter is probably going to be off school tomorrow due to coldy/flu germs going around the school, half the classes are empty but no mention of swine flu thank goodness. I do wonder who actually decides whether it is swine flu or just ordinary germs. My other daughter jetted off to Dominican Republic today, lucky so and so.
I’m not feeling sorry for myself honest.
Gemjunkie, can’t believe what you have been through, hope you are feeling better soon.
At my first Chemo, I was given a fast track card to keep on me in case of problems with all my details already filled out and details of what to to do in an emergency. I was also given a steroid card, also filled out with my details.
Good luck to all of you having your next sessions this week, I wait to hear how you all get on as I am only a little behind you.
Take care, love to you all,
Jane
still smiling.