i had the immune boosting injection on easter monday and brok out in lumpy itchy rash 2 hours later! turned out i was allergic so having to rely on good old fashioned common sense now - so struggling! on day 8 after first FEC and feel better than i have for months! so just waiting for the big foot in the sky to stamp on me and bring me back to reality.
on tablet thing - i was told i could take anything paracetemol based but definitely not aspirin. hope that helps
hi all
had 5th immunity inj yesterday and by 5pm i couldn’t move again my back and legs were agony. went to bed 8pm slept on and off woke OK this morning. i cant make it out. still, only two more to go… i don’t know if coincidence but each time i have had inj and bled get pains other times fine. hope you others at same stage are OK. enjoy the sun while it lasts.xxx julie xx xx
Just popped in to say hello. Spent yesterday sobbing 'cos my arm veins didn’t like the chemo and I may well need a line put in. Arm still painful but not so bad now. Hubby was fantastic in gruff, blokey way and made me realise none of this will seem important in a year or so.
It’s the first day of a week at college for me so I’m off to bed now! Everyone else have a lovely restful Sunday.
a
x
Sorry to hear of your problems with your arm. Is this from your first chemo or have you had another since you last posted? I’m having a PICC line put in on the 7th - not because I had difficulties but because I’m a complete wuss when it comes to veins! I’m a bit nervous about it and worry that having the line sticking out of me will be horrible in itself, but was reassured by the nurse (plus some postings on here) that it’s definitely a better option. It also speeds up the time it takes to administer the chemo which has to be a good thing.
Are you working or studying at college? Hope it goes well. I managed 4 days at work last week and was SO glad of the distraction. Plan to do the same this week although may shorten my days a little as I found I was exhausted by Friday ! It’s all a matter of listening to your own body.
Well good morning girls.
Its a dark morning. i hope you all remembered to put clocks forward and are also prepared for April fools day tomorrow…
We are on countdown to chemo no 2 now… i am wishing my days away but cant wait for that day in July when this part of treatment will be over… i must say i am glad my inj finished and hope i don’t have to have them again. Also i must add the side effects i was expecting haven’t materialised and generally feel OK although very tired in afternoons. i go to bed early wake around 1 but manage to get back to sleep and surprisingly don’t feel bad for it. please don’t tell me it gets worse with each chemo although i am thinking it has to this cant be it… i have to visit oncologist on Fri 4th for chat to see how its all going, then blood tests on 9th and hopefully no 2 on 10th.Whats all your next procedures girls. perhaps when we get to this stage i will start new thread chemo no 2 etc for us all. i do hope you all keep posting as its so reassuring…
have a good week all xxx juliexxxx
hi just had coffe breakand realised i hadnt said what i wanted to in last message. does anyone else suffer with chemo brain…
sarah. i wanted to ask how the hair situation is going do you think the cap is working. how do you manage to work i am so tired in the afternoons. Luckily i gave up work when i was diagnosed in sept. i was planning to have me time from xmas onwards but this brought it all forward.
Pinky ann. i was so sorry to hear about your problems and dont worry about a sobbing day. i think we are all allowed one. my hubby is like yours. doesnt say much. he is always asking if i am alright i always say yes. god knows what he will do if i said no. i grin bear it and cry it in peace. also i hope colege goes ok for you what are you doing studying or working etc and is it just a wekk. good luck. hope you dont get chemo brain
jayne i am glad not only one re immune inj why were they giving them to you. i managed to complete my course of 7 although two days were very bad. i agree with you i am waiting for something to happen as not been as bad as i thought andi usually suffer with everything they say you might get.
taurus. good luck for the 7th my next one is 10th i hope you have a really good holiday. relax and enjoy. may be the sun wil come out as well.
have a good week all and sorry if forgot to mention anyone or anything. i have tried on three attempts to do this and keep losing what i write.
xxxxxxx juile xxxxxxxx
Hi! I had my first FEC and cold cap on 17th March, next one due on Monday 7th April. My cold cap wasn’t attached to anything it was like a thick riding cap filled with gel that they got directly out of the freezer and they changed it twice, every 30mins so I was able to walk about. For me the boredom was the worst thing that first day I was the first to arrive and the last to be seen. I hope I will be in and out a bit quicker next time.
In the first week I was just a bit more tired than usual, not all day just in the early evening if I’d had a busy day, I had to take myself to bed really early like 8:30pm! I was mildly nauseous but resisted popping pills I only ate very plain things like toast and if the look or smell or even thought of a certain food made me feel queasy I didn’t have it - there are still things I don’t fancy that I normally enjoy but hope I will return to my normal appetite in time. The bad taste in my mouth I can compare to how your mouth would feel if you went to bed without brushing your teeth and had had loads of red wine and a really garlicky pizza for dinner! Yuk! The tiredness wasn’t as bad last week and the bad taste has gone but I found sucking sweets and drinking weakly diluted drinks like fruit & barley helped.
I have heard that if the cold cap is not going to work then after the 2nd treatment is often when hair starts falling out. I am still grooming myself as I normally would but have a wig on standby which my hairdresser has given a bit of a style and a trim for me, it is really nice and I got it from Direct Wigs the link to their website is on here and if you sign a declaration saying you’re on chemo they deduct the VAT. The people that work there are EXTREMELY helpful, pity other organisations don’t treat their customers the same whether they are suffering from cancer or otherwise.
I just want to get my second lot of FEC out of the way then I can think 2 down only 4 to go.
Hi Clarabel and welcome its nice to have another person at same stage. Your symptoms are all similar to mine. Your cold cap sounds better i was plugged into a machine and had ice cubes on my head when they tok it off. I had to stay two hours after chemo finished did you. I am like you cant wait to get second one out of way. Good luck with it. Are you having any other treatment after chemo. Whats your history to date if you dont mind telling us. i am going to local hospital for wig fitting. They have a hairdresser there who stlyes it etc ready for you. i will go and like you have it on standby and if i dont need it it can go in toybox…What aprt of the country are you in. have a good night and keep in touch.
It’s great to speak to people at the same stage of treatment as myself. It started chemo (FEC) on 27th March. Hoping to shrink my tumour before surgery. Tried the cold cap. It wasn’t too bad and it worked on my sister who had breast cancer last year. She kept her hair and you would never have known she was on chemo. Although the nurses tell me everyone is different and I’m hoping to be as lucky. Feeling spaced out and wobbly but not too bad. Just about to wash my hair - petrified at the thought of it falling out. Silly I know but it is my main focus at the moment. Went to try on wigs last week - be prepared and all that - and was told I had the biggest head she had ever seen!!! Typical! so my choice was very limited. I’m going to go back to work tomorrow so that will make things seem more normal. There is only so much daytime TV a girl can take!
Anyway - any tips greatly appreciated. Please keep posting. It makes us all feel less alone xxxx
all at the same point then! my onc appt on weds 2nd and next FEC on 10th, so not long to go. Still feeling ok at the mo - still waiting for the ‘crash’. Mouth a bit dry and sore sometimes, but nothing else to speak of. going to hairdressers at the weekend for the wig/haircut moment! Taking my sister and we thought we’d treat the wig to a bit of lunch after… hope it’s a cheap date!
Work has proved to be my saviour, only caught Jeremy Kyle once and wanted to smash the tv! so not a good move for me to be off duriong the week - provokes violence to innocent household items…
It sounds like we’re all doing pretty well so far. Well done girls ! Like the rest of you I’ve had various symptoms but nothing too dreadful.
Hi to Clarabel & Jax - welcome to the group.
Julie - so glad your injections are all finished - it’s just one extra thing you don’t need to be going through. No news re: the hair but think it’s early days yet. I’m seeing the ‘wig lady’ on Monday ‘just in case’ , although think I’m probably more a scarf person. How do I manage work? I think Jayne summed it up - one episode of jeremy Kyle was enough to drive me back to work !
Thanks so much for the good wishes! Arm improved a lot and the hot packs from the hospital help so I’ll keep them up.
I spoke to a patient at the hosp who is nearing the end of her chemo and she shpied me her central line. Freaked me out a bit but she said it’s fine and you soon get used to it. The humungous plaster to keep it in place freaked me more as I am allergic to everything…so I’m test-driving a plaster ‘just in case’. Bit itchy, which doesn’t bode well.
I’ve got a week at college as I’m learning to be a chiropractor. Normally, I work full time but work don’t want to see me again til I’m better. I’m not sorry as I can only concentrate for micro periods of time. (Yes, recognising the chemo brain!) Haven’t had to resort to Jeremy Kyle but have discovered the joys of ‘chick lit’ and found ‘Horse and Country’ on Sky so I’m very content with being off. Heaven knows when I’ll ever be able to concentrate for long enough to make sense of neuroscience!!
How’s your hair? Had mine cropped before the first chemo and it still looks nice but my scalp hurts a lot, especially when I first wake up. Even touching my hair hurts, so I guess it’ll be on it’s way soon. Picked up a v nice, if rather bland, wig today. However, it will be good for when I go out and don’t want to be looked at. I’ve come to the conclusion that I need to practice - same as with the tiara when I got married.
Food not to bad but I have gone off ‘proper’ chocolate and only like the milky stuff! Odd. I’m also drinking water and smoothies like they’re going out of fashion.
Next one on 9th. Looking forward to it in a funny way, as we’ll be a third of the way through wehn we’ve had 2 FECs!
Hi All
Thanks for the welcome. Is anyone else having trouble sleeping? I seemed to lie awake all night (on my satin pillowcase to stop my hair falling out - well anything is worth a try and its supposed to stop the wrinkles!) Maybe its because my hubby is working away this week. First day back at work was tiring but it was so good to get back to normal.
Next hurdle is an MRI scan on Thursday - has anyone else had one? I’ve heard its noisy and I just have to lie still. I think I can manage that. Next chemo is 17th.
Off for a long relaxing soak in the bath… Goodnight all x
Hi Pinky Ann and Jax
Dont worry about your typing mine must be the worse on here. Computers are strange to me, never had them at school. I go on here and ebay when i am bored. It was good at looking for baby stuff for my daughter.
Re boredom. Daytime tv is rubbish. i have got into bargain hunt a bit when i have a sandwich. Keep an eye out as what to collect if i wander round car boots in good weather. i am actually going to bed really early so i miss a lot of programmes and i catch up on them during the day i watched eastenders at 7.30 ths morning and in bed…
Re hair my scalp was really hurting yesterday and itchy. Just washed hair this morning and nothing extra came out so heres hoping. i did have it cut really short before the treatment. i do dye my hair every six weeks or so as grey bad. i do wonder what it will look like soon if i keep it as you cant dye it can you… another q to ask wig fitter and oncologist…
Re food. Havent gone off anything except t doesnt seem to have any taste to it. Eating everything and anything putting weight on as not doing any exercise.
I dont have trouble sleeping. I get tired really early and go to bed and sleep till around 1ish then have weeeee sometimes a drink i toss and turn but manage to get back to sleep and i wake feeling ok. The other night was bad i woke at 1.34 and had won 1.34 million on the lottery i did spend the rest of night worrying how to spend it who should get what etc. I did buy a ticket and thankfully didnt win so no more worries.
Jax re mri scan. is it just a breast one… I asked for one as mamogram didnt show anything. It is a huge machine very claustophobic. Yes and very noisey. I was given headphones and asked what music i liked. I could still here noise though. As far as claustophobia was concerned it helped as i laid down on tummy and popped breasts through like cup holes so couldnt look anywhere anyway. It was over after 20 mins seemed like ever. The nurses did talk to me through intercom and told me i could stop at anytime. When they pumped dye into my arm i felt it really cold and felt it was going everywhere and i was getting wet. I was tempted to press stop button. I told them after and they said thank god i didnt as have to do it all over again but they should have warned me about that sensation. Anyway good luck with it. Let us know how it goes.
Pinky ann you are counting days till 9th i am till 10th and yes two will be over. We all seem to be lucky with side effects so far. Will it hit us next time i hope not as somehow i am not so prepared this time mentally. Maybe nearer the time. I got to get tomorrow over with as visit to try wigs incase. have a good day all.xxxx julie xxx
Got in the shower this morning and found what felt like handfuls of hair coming out ! It’s only at the back though, and right down the bottom around my hairline so I hoping that the cold cap has done it’s job and the bits falling out are just where the cap didn’t reach properly…fingers crossed ! Took a scarf to work this morning just in case though and my OH suggested staying in at lunchtime as it was quite windy ! He’s allowed to tease me as he also has no hair ! In a weird sort of way I was quite relieved. Having not had much in the way of side effects, I was starting to worry that the chemo wasn’t doing it’s job - now I know it is.
Met someone else today at my physio appointment who has just finished her chemo and she used the cold cap. She said her hair had thinned out quite a bit but she managed to keep it (and it looked pretty good to me). She said she very nearly gave up on the last two lots as it gets a little more difficult as your hair thins, but that her husband encouraged her to keep going.
PinkyAnn - I’m having my PICC line put in on Monday - when are you having yours…?
Hope everyone’s OK and planning something nice for the weekend to take your mind off next week
Sarah
xxx
Julie - Thanks for your comments on the MRI scan - it really helped, having some idea what to expect. Hard to lie still I didn’t get any music, just a pair of foam ear plugs! I was supposed to have the scan before my first chemo but there was such a waiting list I had to wait 3 weeks for one. I think the idea is to have one now and another one in a few months time to see if my tumour has shrunk at all.
Good luck with the wig trying session. My roots look awful at the moment all grey as I can’t dye it but at least its still here for the time being anyway.
Looking forward to my husband coming back this weekend as it gets lonely at home. I think some retail therapy might be in order.
Good luck to everyone going for their chemo next week. I’ll be thinking of you. Jax xxx
Sarah, you’re not alone moulting a bit. Every time I move there are a few hairs…bit noticeable as my hair is pink and I wear nearly all black! Glad you made that comment about having been worried about the chemo not working…I thought I was a bit mental to be on the ‘quite pleased actually’ side of ‘accepting’. Like you say, when you get the side effects, you know things are happening. Still keeping my fingers crossed about avoiding having a line in. I was so obsessed with using the re-useable hot pack, it popped! I got some of those chemical heat/pain relief things from Tesco yesterday and was well impressed. One has kept my elbow all snuggy for 23 hours now and has stuck to 3 different tops! The pain is much less now and is at a level I could easily bear for another few months.
Julie, best cure for boredom ever is to get a pony! We have one on loan and her ‘real’ owner looks after her in the week when I am working. Since I’ve been off, I’ve been seeing her most days and really miss her, as I am stuck indoors at the mo at college. When I feel a bit grotty, I just call her and she comes to me but I go and fetch her when I fancy a walk. Been riding a few times too and she seems to know ‘mum’ is not quite herself. (Bless.) Have also discovered the delights of downloading TV progs for free. I think we should all go on ‘How to Look Good Naked’ when this is all over. LOL!
Looking forward to going home tomorrow and seeing my family…even though the girls’ behaviour while I’ve been away means that we need to have a Big Talk with them over the weekend /sigh/. Anyone else’s kids leading them a merry dance, or is it just me? I think they are playing up because I’m getting more attention than usual, and it’s a routine change.
Jax, is there a problem with using a wash out colour on your roots? Maybe you could do a tiny patch test behind one ear? I was v naughty and did mine with crazy colour (as wash in/out conditioning colour) the day after my first chemo and all was well. (I’d done the bleaching beforehand.)
Have a good weekend everyone and get lots of rest and try to eat well so your blood test comes out OK and there aren’t any delays! (Can you tell I want to get this over?)
hi all not long now.
Ann i am so pleased you have sorted your arm out and not suffering now. I think the pony you are caring for is very lucky. horses are not for me. i have only ridden a camel that was under protest on hols and guess what my luck it was the only camel to go off in opp direction. i dont seem to have that much time to get bored i dont really do anything as such. my daughter and grandson usually visit every day and i have two boys who come also reguarly so i am not alone for long. wished i was some days. i have a little dog and she follows me everywhere and luckily being so small i can walk or not depending on how i feel and the weather.
I had a wig meeting yesterday just in case. i have gone for windswept look normally i am neat and tidy. i didnt like the feel of something on my head but if needs must i must. i think i wll look like the woman on my family…
I have had my oncologist meeting today she asked how chemo went i said oh i have had it have i… she was pleased with my wound and has said i dont need inj next time and i dont have to see her again till just before third chemo.
I want to say have a good restfull weekend all and prepare for the week ahead. we must all stay in touch. shall we continue on this thread or start a new one with 2nd fec as title.
Taurus i think you are ahead of us on no 3 lucky you.
Sarah and Clarabel good luck for 7th i
Jayne i think is 10th the same as me
Jax you follow us good luck for 17th. when do you get the mri results hope they are good.
If i have missed anyone or got dates wrong appologise for this chemo brain. i am starting to get a little worried that its got to be worse next time or as others have said is it working. must go now t awaits.
xxxxxxx julie xxxxxxxx