Starting Chemo November 2012

[Guest user]

Hi ssparklers

jellymold I had that cough after 1 st session and I spent loads of time on the settee , hot honey and lemon I found calmed it down so I could sleep , still have a bit of a cough and that is 4 nearly 5 weeks later buy I assume we will never get rid due to chemo, its just juggling the antibiotics to stop it getting infected

col123 I also have had oral thrush , after 2 lots of antibiotics and chemo last time , they gave me some tablets to take for a week at my second chemo session, they have got rid of it it started to make me feel sick before I got them to take , I have been told that pineapple is the natural help to oral thrush as it helps to clean your palette .
deeh I'm with you girl I do not care about my hair loss either I have even added a pic of my egg head on my blog http://sarahmartin1970.blogspot.com , if you want to see xxxx

i am also on my 3rd session on the 21st so for 3 days after I am doing a massive nothing and drinking loads of water so I may be have decent for my 6 year old daughter on Xmas day, I have the family coming around to cook dinner and I will be giving my orders from the settee lol xxxxkeep sparkling every one , is a small price to pay for a short time to beat this sucker
xxx

[Shazzaboro]

Morning Jellymould, sorry you had a bad night but hope you managed to get some sleep. Enjoy your christmas lunch. I'm hoping to go to see the Hobbit today. Look after that cough xxx

[Guest user]

morning, had a really bad night, coughing all night ended up on the sofa so as not to disturb everyone, going for a christmas lunch today with mum, dad and sister. have a good day all. xx

[deeh]

evening sparklers
over the worst of my SE's now, but apparently im at my most vulnerable for picking up infections for the next 4 days, so have put myself into isolation so as not to risk another stay in hospital and to be well for xmas. so my energy levels are back up and im sooooo bored. my daughter in law and grandkids all had colds this week so they couldn't visit, i miss them so much. want to go and do some xmas shopping but got to wait till middle of next week. going to spend the weekend putting tree and decorations up to pass the time.
been reading comments about hairloss and wigs and feel im the only one who couldnt give a monkeys about it! not even had my wig out of box yet although im planning on wearing it for lunch on xmas day at in laws, but how long it will last is anyones guess, probably be back in bandana before pudding served lol.
my next chemo was due on xmas day but been put off until 27th - phoned hospital today about blood test and told i have to go between 8.30 and 11.30 boxing day!!! my OH not impressed as he only got xmas day and boxing day off work so no lie in for him this xmas
col - hope you not got thrush, i had that for a couple of weeks and its horrible, get some mouthwash from gp or hospital.
love to all, keep fighting and keep smiling
xxx

[Guest user]

well done mags - I wear sleep caps, which I don't like as I think I look like I'm going swimming every time I go to bed but they do keep your head warm. somebody bought me a silk pillowcase which is lovely as so smooth on your head and face but my oh hates it when he rolls onto it was it can feel quite cool. doesn't bother me as I've got my swimming cap on!!

welcome snodby - glad SEs not too bad and hope coldcap works well for you.

shazza - wrap up! I haven't been anywhere today except school run - too icey. A friend from work came over which was lovely and also to catch up on the gossip and talk about something other than BC for a change!!

curlytop- hairs in your cornflakes is never good! I know what you mean about that stage, they really do get everywhere. I wrapped some presents early and was fishing them out as I went along. I fear some people might get a few of mine on Xmas morning!

I've woken up with a sore tongue and it looks bruised on the edge of it. Hope it's not the start of thrush.
love to all.

Col xxxxxx

[Guest user]

morning sparklers and welcome to the group snodby xxx

[Curlytop]

col123. Thanks for info will make some enquiries. Really. Need to take the step now hair everywhere even oh breakfast don't go down well with cornflakes tehe! Resorted to bed caps to try to catch what is comin out.
lov xx

[Shazzaboro]

Morning Sparklers
Snowing and -3 here today. Bet I feel the cold now, with no hair
Hope everyone has a good day
Keep strong and carry on sparkling

Shazza xx

[snodby]

Hi Sparklers.
first time on a forum.....had my first lot of chemo 30/11... side effects have not been to bad.habit nauseous heartburn...the fatigue is the one! Felt better after about 5days. haves the cold cap..locust can't come to terms with losing my hair...have had it cut short so fingers crossed it will work so far so good .
Got my next session 21 dec...lovely just In time for Christmas.
have good day everyone x

[Mags2710]

Morning sparklers, well finally done last night, hair removed no.1 blade. I went to friends house didn't have the neck to sit in a hairdresser and have it done. Shorter than my OH. Can't sleep feels strange lying on the pillow. So I find myself on here wihile the house sleeps.
Daughter is fine with head but don't think son has taken it well. mite need a few days to get use to it. Atleast I can safely cook and bake with the knowlege that there will be no surprizes appearing in the food.

Hope today is a good day for everyone.
Hugs to all.

[Guest user]

well done yYvonne! take it easy. Hope you have a good night.

curlytop - I've been so lucky as someone told me about a local hairdresser who is sso lovely and actually goes up to the hospital to cut wigs for people. I gave her a call when it was still long and tbh in a but of a state. I hadn't washed it for a while as was bit scared when it really started to come out in clumps. She sorted it for me and cut it short. she was just so lovely and understood how difficult it was for me. I then went on a hair session put on at the hospital and she came along. She offerred me a lift home and I said that I thought it was time to shave it as it was getting so patchy and she said she'd come into mine and do it then for me. that was great as it was just me, her and my oh (who actually loves it and says he thinks I look cool with a crew cut - it's me that needs to get used to it as oh and little boy are fine)'. She did also say that she offers out of hours slot for people in my position as she understands that some people don't want to be in a shop full of other people. I was so lucky to find her. might be worth trying to find out who cuts wigs locally and giving them a call - I think they're more sensitive about it if you feel a bit vulnerable. I also think Trevor Sorby website also lists hairdressers who cut wigs and I assume willWill help you with your hair
http://www.mynewhair.org/AdviceandSupport/Whereismynearestsalon.aspx

worth a look maybe. best of luck for tomorrow.

Love, Col xxxx

[Guest user]

Jellymold and Col thanks for the good wishes.
Had my second round of chemo today bloodworks came back as normal just feeling wiped out at the moment. Didn't have the cold cap on this time so I expect to be bald very soon. I don't know which is losing more hair me or my dog.
Good luck for everyone that will be having their chemo sessions this week hope you sail through it.
Stay strong sparklers we will beat this.xxx

[Curlytop]

Thanks for that Col123. Did you have you head shaved at home. I was thinking bout going to a local hairdresser. I have ordered couple of sleep caps so don't get cold in night. These will probably do under my scarf/hat as well.

Bring it on tomorrow will only have four to go then!

xx

[Guest user]

Hi curlytop - mine was a bit red on the backing my head when it was shaved and the district nurse was here and said just put a but of e45 on it. it's gone now. I dont regularly moisturize it but rub a bit over but now and again.
I've been wearing a hat on toptop of my wig when out. too cold otherwise. doesn't seem to be a problem. they do some nice little crochet one's in Dorothy Perkins which look really nice.
Good luck for tomorrow curlytop.
col xxx

[Shazzaboro]

Evening Sparklers
Still full of aches and pains this morning when I got up. Luckily I was booked in for an aromatherapy session this afternoon and that seems to have sorted it out. Got a lovely back, shoulder, neck and head massage. Also found out I can lie on my front again if the need arises. Did need a cushion under one side though to keep me straight lol Well worth the effort. Saw the wig lady afterwards too and she she sorted my wig out. Surpriseed I never lost it completely, I had it on wrong, too far back, and it was adjusted wrong. Feels loads better now. She also took rest of hair off so I'm a complete baldy now. The wig looks fab now its where its supposed to be! [Col, I laughed too when I was chasing it round my head]
Suzi, sorry to hear you have been so poorly. Hope you feel better soon. I'm only coping with SE, don't know how you manage with 5 kids too!
Mags, I found having no hair is easier than having some hair with baldy bits. Feels a bit weird at first in shower but you get used to it lol
Jellymould, if we are two bolied eggs now I want to know where the soldiers are - love a man in uniform
Mummybear, I've taken up a lot of the BCC opportunities and the holistic centre at my hospital is based on volunteers and charity donations. They have been great. Currently getting aromatherapy there and its very relaxing
Curlytop, good luck for tomorrow. Fingers crossed SE are minimal for you x

Keep strong and carry on sparkling

Shazza xx

[jenny12m]

Suzisue - sorry to hear you have been in hospital. Hope you are felling better.
Shazza - I was told wig or hat but not both. For my sons' football matches I wear my big furry hat, but most days, including for school run, I wear my wig. But on Sunday it was football and Christmas drinks at the pub. I had to do the fastest switch over from hat to wig before anyone came in the ladies! It was funny. Wig does not go on straight when you're in a rush!

[Curlytop]

Hi everyone not commented for a while but have been reading threads. Everyone seems to be coping well done to you all. I am no longer a culytop hair falling out very quickly now think I will have to make the decision too have what is left shaved off. Once it is shaved do you need to put anything on your scalp like moisturiser. Second session FEC due tomorrow. Don't feel quite as nervous and hope SE especially sickness not bad.

Stay strong fellow sparklers and big hugs to you all.
xxx

[Guest user]

Hi all
pascal - hope you're feeling a bit better?
shazza- hope your necks better and your windy wig tale made me laugh - sorry! looks like my ditty wasn't too far off the mark eh?
Lucy - have sent you a message.
Yvonne - good luck for today. thinking of you.
deeh- I know what you mean about tiredness. I'm on a total go slow as most things are an effort. also know what you mean about infections. I'm pretty much avoiding people this week. didn't do to works doo as not risking catching something. sometimes I thin k'm I'm being a bit paranoid about it but like you having had a stint in hospital, I'm nit taking any chances. therrs so many viruses about. take care.
jellymould- hope the antibiotics get on top of your cough. stay warm.
Susann- Birmingham sounds like a good plan to me. also good idea to have something to look forward to. Hope you're ok.
suzisue- oh bloody! what a nightmare. Hope you're feeling better. I've only got one kid and Im just waiting for him to pick something up - there's loads is . kids with something or other at the school . hopefully not for both of usus but I know what you mean with 5 kids in the house. My hair started going after 2 weeks and got progressively worse over that 3rd week. I had a really tender scalp so decided to get it cut short even though I hadn't originally wanted to. By 3 days after 2chemo I got it shaved as scalp was still sore and it started to get bald patches. the scalp pain went pretty much straight away. thinking of you.
mags - a cancelled chemo! it's hard not to say I'd like one if thosethose but I suppose it only messes everything up for you. Good effort on getting to the pub.
mummybear - great idea on charity walk! I saw the Crazy Hats charity on lineline - you're lucky to have it near you. am up for a coffee - when will you be about?

Love yo all other sparklers.

[Guest user]

Good morning sparklers,
big hugs to everyone, day l4 second treatment, my SE are at a minimum today, my mouth ulcers returned again this time, I had ulcers & conjunctivitis this time but all gone now.
Last week I went to my first coffee morning at Crazy Hats his is a local breast cancer charity for Northamptonshire, they were the most lovely group of women some are in remission some having treatment, family members & one husband. They were all so inspirational they were celebrating raising £1.5 million pounds. I am now going to take part in their sponsored charity walk in March, I hope I am well enough to take part, my daughter & work friends are also taking part. They meet every Thursday I will go again after my 4th cycle.
A quick question have any of u received support from any charities? Breast cancer Care have a fab peer telephone counselling team.. my contact is amazing so positive and supportive she calls me every 3 weeks around day 5 after chemo to see how I am coping:) idetail want further information let me know.
i am loving my wig & I picking my blonde bob on Monday, I cannot wait to wear it over Xmas SE permitting as I have chemo next Thursday, my family are visiting to celebrate Christmas, not sure how I will be!!! But it will be fab to see everyone!!!
col123 are you up for meeting for a coffee this weekend?
Birmingham sounds like the ideal place to meet.
Stay strong & brave sparklers a big virtual hug from me 🙂
mummybear x x

[Guest user]

morning winter sparklers, wrap up warm if your going out today, lol im sitting indoors with me fluffy hat on.
yvonne good luck . xx
suzi hugs hun xx
mags ive gone boiled egg now, the few little bits i had left were so bristly decided to do a shiny. but wow don't have feel the cold now.

enjoy your day, hugs sparklers xx

[Mags2710]

Evening sparklers,
Went to see my onc today, repeat bloods done, wbc 0.6 was 0.1 yesterday so no chemo tomorrow. Try again next week.
Clippers hopefully tomorrow or thursday, washed my hair on monday and the front went into a clump and I had to cut 2 big bit out, so it's thinner on one side and really short at bits. Fed up of hair coming out and getting everywhere. Out at the pub again with my daughter and boyfriend wearing a bandana, driving so soft drinks only.
Take care all
Night.xxxx

[Guest user]

Sorry haven't posted in a while. Spent the last week in hospital, infection, temperature etc. Made quite a gang of friends on the ward so feels like home away from home!! But now frantically trying to get everything organised for xmas in case they take me in again. Done the online shop thing so it's all delivered and I won't need to go out shopping. It's so hard with five kids in the house, someone is ALWAYS ill and it's imossible to avoid. Fingers crossed my count goes up quickly!!! Head itchy and a few hairs beginnig to come away when I run my fingers thru it so expecting it to drop out over the next few days??? Does it happen quickly?? Scared of this bit! Generally feeling much better tho. So good to read all your updates, it's stopping me from going insane.
Keep yer peckers up all!!
x

[Guest user]

I made my mind up today losing too much hair to use the cold cap again and all my family are telling me my health is more important than my hair so going to try and go bald with dignaty ( I know spelt that wrong ).
I have my second chemo tomorrrow morning not looking forward to the side effects so wish me luck. not looking forward to the next 10 days.
Stay strong my fellow sparklers and keep fightingxxx

[Guest user]

hi susann i think birmingham is a nice central place and there are alot of hotels of varying cost within a stones throw of the hilton which we could all meet up at.

[Guest user]

Hi everyone and seasons greetings, not posted for a while as I am mainly marking time to the 3rd cycle next Thursday and the half way mark. Now sporting the same look as a lot of other sparklers, a bristly head. Have resorted to sleeping in a black beanie hat some nights as a cold head wakes me up, my husband said I looked like a bin man, which gave us a reason to laugh at least. Due to the previous pattern, I am expecting to be feeling rubbish by Christmas day and then to pick up by New Year, with cycle 4 looming in January. One consolation as others have said, is to be going through this during the winter months, no scraping the car to get to the office, no icy roads to negotiate, no risk of trekking home through snow and ice.
Christmas cards have been sent, I have ordered a sheepskin cossack hat for now and the future when I have hair again. Booked tickets for next November to see Cirque de Soleil, to treat my mother for her birthday and to mark a year's milestone from chemo. How great that will be to look back on this from 12 months distance.
Last time I posted I mentioned the idea of a meet up, since then the contributors to the November sparklers has continued to grow, no idea how many we number now, and of course we are nationwide. I noticed some were in favour of doing this in the summer next year, so thought I would put in a few suggestions for now:
Location - somewhere central in the country, Birmingham/Cheltenham and surrounding counties - Warks, Worcs?
Venue - a nice hotel, good facilities, because we deserve it
Duration - a one nighter or a weekend?
When - July/August
In the meantime, hope everyone battles through the SEs, avoids hospital admissions, some get to have a Christmas and 2013 dawns with the promise of the end of chemo in sight

Love from Susann

[Guest user]

morning my beautiful sparklers, how is everyone, i have had to ring the docs today im on antibiotics now for my chest as im asthmatic didn't want to take any chances, coughing up lungs isn't healthy. lol im cheering myself up by making christmas biscuits. wish i could send you all one. keep sparkling xx

[deeh]

morning sparklers
hope you all well?
the dreaded fatigue caught me over the last two days, barely been able to get out of bed!!! needless to say no xmas shopping been done - decided now not to worry bout it - folks will just have to go without this year - my health more important. Luckily i have already got granddaughter sorted (shes 3 so really excited this year) and OH fetched grandsons from argos yesterday (hes only 1 so doesnt understand anyway), and they are all im bothered about this year.
just getting a bit worried now after having infection last time and having to go back into hospital in case it happens again and i end up hospital over xmas. Feel like shutting myself off from everyone just to be on safe side.
Hope you all keeping warm and well in this horrid weather. It was lovely to look out this morning knowing that i hadnt got to go out - up until may this year i was a community carer and used to be out at 6 o clock most mornings and hated all the frost and snow. at least thats one advantage of being ill
take care everyone
Dee xxx

[Shazzaboro]

Hi Sparklers,
Been suffering with the steroids today, not had much sleep and think its catching up with me. Finished them now so hope I sleep better tonight. Got some bald patches coming through now so head feels a bit weird, stubbly with buzzed hair and soft skin in other parts. Had a bit of a drama with wig when I went out in it for first time. Decided to wear hat on top as it was a bit windy, as I was walking around the hat was moving and taking the wig with it! Luckily my mate noticed and I did a runner to the loo to sort it out. Wont be doing that again, wig on its own from now on
Hope everyone is keeping as well as they can, keep strong and carry on sparkling

Shazza xx

[Guest user]

Thank you for the suport it really helped I woke up in fighting mood again which was good also spent all day in leeds general having my heart scan which they had to do twice oh well thats how the cookie crumbles.
Not looking forward to wednesday which is my next chemo session but at the moment very posative hope I stay that way.
Stay strong and keep fighting !
yvonne xxx

[Guest user]

Hi everyone,
i am on day 12 and have been feeling great for past 3 days. It's such a relief as the treatment knocked me for 6 and took me longer this time to 'turn the corner'. My treatment day is a Wednesday and both times I have had what I call 'black Mondays' following. This is generally the day where I start to feel a bit better and will get up on my own to shower etc and this is the first time I see myself in a mirror and both times my weight dropped a stone... And I feel like my world is crashing down on me. But both treatments by about day 9, I feel completely normal and have days of fun and laughter (my mood is generally very high, higher than before in my life!). So I really need to try and learn that on my next black Monday, to tell myself to not be scared in how I look and how I feel as I will turn the corner. I'm not sure how easy I will find it but I really must try and remember this next time! I looked like I was dying, in my eyes - I felt like the cancer was taking over my body. This is not the case, its the chemo that is making me look this way. These are my fears, I thought I would share them.. Because that is exactly all they are, fears and I want my fears to know I'm not stupid, even though they try their hardest to get under my skin, I'm made of stronger stuff and they can do one! (I feel like I am publically embarrassing my fears!!). Rant over!
My brother was here yesterday which was lovely and he spoke to my husband- he is really findin this hard, ESP as he has a really stressful job. My brother said he could see the problem straight away and that it's hard for my husband as he has to react to my mood- when I am ill he has to support me etc and when I am having good days he has to also be full of beans and respond to my mood, and this is really hard on Him as he still feels sad and scared etc. I am trying on my good days to put my husband first and to look after him with dinner etc ( we never had this type of relationship before- both independent, very busy careers, social lives, always out, travelling, partying etc) makes me realise perhaps we were passing ships at times, in the rat race so to speak. So being off work, ill, him looking after me, my mum being here on the first 4 days to look after me - Like everyone's, our life has been turned upside down. I need him try and talk to him, as I can see his pain in his eyes and I know he is trying to protect me and womy want to tell me how he feels, to not worry me. This part of the 'illness' is what I am finding harder than I thought I would- any tips?!!

my arm is starting to feel sore in the veins- anyone know what can ease this?


sending my love to all sparklers
xxxxx

[Mags2710]

Hi sparklers, I've had a cough from the second week of first chemo, been a bit breathless as well. Having to stop or slow down a bit when walking the dogs, walks a would manage before are taking a bit longer or am walking shorter walks depending how I'm feeling. Went to ooh and they gave me antibiotics as preventative, but I think it must be chemo related as medication finished and still coughing. Took a period today first since my op. Though I wouldn't have one till after treatment. I had started peri-menopause before all this started. What a bummer. lol I've been having a bit of an avalance down below everytime I go to the loo. Amazed at how much hair is still left.
Hugs to all. xxxx

[Shazzaboro]

Hi Sparklers
Don't know if its the time of year or another SE of the chemo but we seem to have a bit of a home baking thing going on here. I've got my nephew coming over next weekend to make cakes, sausage rolls and caramel shortbread, all being well. Slowly getting used to the fuzzy head but dont those wigs make you warm? Sat in alone at moment, bald, trying to cool down lol Got a weird ache at the back of my neck on operated side, not sure whats going on, hopefullysort itself out soon as its annoying me now

Keep strong and carry on sparkling!

Shazza xx

[Pascal_48]

Yvonne, I have been feeling the same the past few days. I had my 2nd chemo last Thursday. The 1st one wasn't too bad, I tried the cold cap and it wasn't too uncomfortable and I thought it was worth a try. By the 5th day of my 1st chemo I was feeling much better and I had my heart scan then. When I was told to wait with everyone else in the x-ray waiting area by the receptionist I told her I couldn't as my immune system was low due to the chemo and she was lovely and found me somewhere else to wait. The scan was no problem, just lay there looking at butterflies on the ceiling!
After 2 weeks my hair started to fall out, but I tried the cold cap so no regrets there. The 2nd chemo was much quicker, no sitting with a cold head! It is taking me longer to get over this one and so I am a bit down, feel sick most of the time and now I know the difference between tiredness and lethargy, if you're tired you can sleep at least!
I am watching x factor and that seems to be cheering me up a bit.
It is worth it because we are all worth it, as our friends and famililies will agree. It is hard to be strong all the time and we don't have to be, we are human after all.
Take care, love and hugs xxxx

[Guest user]

Hi all sparklers!

Had a good weekend. Went to see Santa yesterday with my little boy. It was done really nice as it was prebooked and just a small group so not loads of snotty kids to avoid! They all gathered around Father Xmas and he spoke to them answering cute questions, then a pressie and a photo and then a walk through a winter wonderland. It was very sweet and I did have a little smile to myself as I stood next to Santa, me with my wig on and him in his!! Done lots of wrapping pressies too - my little lad did his own and they look like theyve been wrapped by the cat but he's very proud of them so thats all that matters. Of course, he cant wait now and keeps asking if he can give the dog her present! Its going to be a long 2 weeks with the same question over and over! I'm really trying to appreciate it all and make the most of the build up as Ive got chemo 3 on Xmas eve, which is totally crap timing, but cant be helped.

Jelly - have had a cough for 2 weeks now. They thought twice about whether to give me chemo on monday with it but went ahead as my bloods were ok and gave me antibiotics to cover me. It's probably something youve picked up and you need to keep a good eye on it. to be honest, I wasnt even going to mention it when I got there on Monday but they made quite a big deal of it, made me wait for a doc before theyd do chemo and, as I say, he said if I'd been post-surgery theyd have delayed my chemo because they dont like to give you chemo if youv'e got anything going on in your body, i.e. an infection of any sort. It shocked me a bit really but he couldnt have been clearer and he really stressed about checking my temperature all the time and to call them if it went up at all. All I'm saying is just keep an eye on it and don't take any chances,Hope it doesnt keep you up tonight,

Yvonne - I'm sorry youre feeling down. It's a lot to deal with and we're all bound to be up and down at times. It's only natural. I sometimes listen to what everybody's been up to, shopping, partying, meals, etc and I think I'm doing really crap by comparision. I have to say, chemo really slows me down, I feel breathless for days, I have little energy, have a fuzzy head, etc etc. I really couldn't imagine doing alot and not socialising too much that's for sure. Going to see Santa yesterday did me in!!! Its great to see others being able to do it and I'm pleased that they can but I don't beat myself up about being a bit rubbish at the minute - we're going through some pretty horrible stuff. Don't feel like you can't feel sorry for yourself - you have every bloody right to feel sorry for yourself. You're dealing with a horrible thing. As long as you don't let it drag you down, have a good old cry, get it out your system and then get on with as best you can - that's what I do! An if you feel like you cant pick yourself up, get some support from the helplines. I know so many people who have used them and found them really helpful. Hope the scan goes well tomorrow.

shazza - well done on clippering m'dear. Its difficult isnt it? I struggled with it for a bit but am coming round to it (slowly). I actually showed my little boy it on Friday and he thought it was hilarious, which was fine by me. I'm just so pleased he's not upset about it - he thinks it's great and likes feeling it. He was quite proud telling his little pal yesterday that I had a wig on! Such a relief but still pretty crap losing it all the same. I know a few people who've had issues down below but it hasnt started with me yet. Will wait and see.....

Mags - oh dear, i hope youre ok? falling over twice! We havent really had ice/snow yet. Hope your head's not too bad. I really didnt want to clipper my hair but my scalp got so tender that it hurt resting it on a pillow. I had just had enough and as it was coming out all over the place, I went for it. I have to say it eased the pain pretty much straight away. Thinking of you.

CK1 - hope your fingers are better? sounds horrible. Hope you're on the mend from your hospital ordeal? sending love.

Jenny - I have filgrastin injections from day 2-9 after each chemo. The district nurses did them for cycle 1 but I've just started to do them myself so I'm not tied to waiting for the nurse. Its a bit of an effort to be honest as its really weird injecting yourself but its pretty easy and I just keep thinking how important they are so pinch an inch, jab it in and bobs your uncle. I sympathise on the wind front too. Ive never known anything like it and the noise? We're lucky we've got a dog so I blame her :).

gritty - I get aches across the back of my neck and shoulders and at the base of my spine but I think, as SLM says, they're from the injections as they ease off in the 2nd and 3rd week and I've onyl had them for chemo 2, not chemo 1.

deeh - I hope you have fun on wed with the grandkids putting up the tree. Its a special time. I'm so glad you didnt have chemo on Xmas day!!! hope you're ok.

Hope all you other sparklers are ok. tTake care of yourselves.

Love, Col xxx

p.s. SLM/jelly salted popcorn??? earrguughhh. actually, you've inspired me to do some home baking. I worked full-time before the dx so my little one thinks cakes come out of a packet! I know that's rubbish so will use the time I now have on my hands to do some fun cooking stuff. night all, sleep tight. xxx

[Guest user]

has anyone else started with a cough, i dont know whether its a se or i have a cold coming, but its keeping me awake at night really annoying

[Guest user]

Feeling really down today wondering if it is all worth it, fed up of all these scans and the chemo on wednesday plus my hair can't we just have a week off!!!!!
Got a heart scan tomoz as well not looking forward to waiting around leeds genral for a few hours.
Sorry feeling sorry for my self when I know there are some of us that are having a harder time.
keep your chin up and stay strong.
yvonne xxxx

[Guest user]

I love home made salted popcorn , prob is I eat loads of it lol ,
might try chicken pie tomorrow night, don't normally have time due to work to cook real food .
Going to try galaxy caramel brownies by popular demad lol

[Guest user]

mmmm ive just made homemade salted caramel popcorn. lol it must be the christmas feeling.

[Guest user]

Thought Would join you jellymold , did not want u to be on your own lol , p.s just made toblerone brownies mmmmmm

[Guest user]

morning all another cracking ditty col. have a wonderful birthday SLM. im 40 on 29th of dec so im having a big party on new years eve, which is great coz i work nights and would of been working it. have fun all. xx

[Shazzaboro]

Evening Sparklers,
Think the steroids are keeping me awake so thought I would catch up with you all. Having terrible trouble with my hair this week so got it cropped even shorter on Thursday but still bothering me sooooooooooooooooo................................................. finally took the plunge tonight aand got a mate to buzz it on number 4! Proud to report I haven't cried yet. Was sure I would be a jibbering wreck by now, sure I will at some point though. Tried my wig on when I got home [wore a trilby hat to get back as in the car] and it actually seems to fit better. I've took a couple of photos so will try to post one tomorrow if I'm still feeling brave

Happy birthday SLM!
You might just have started a trend Jellymould lol
Col123, another brill poem and very well timed for me as I've made the decision to buzz hair on top and its also gone of its own accord down below
Yvonne62, glad you are getting organised for xmas and good luck on the day. I'm almost there but on the plus side for me I'm going to my sisters for lunch so no cooking to worry about.
Mags2710, I think you have to go for the clippers at a time when it suits you. You will know when its right. I found the hair more upsetting coming out in bits and pieces than getting it clipped. Nice to hear you had a good meal. I'm still on little and often after 2nd EC on Thursday. Looking forward to eating a full, nice meal in a few days as I'm going out with friends on Wednesday for a bit of a xmas get together.

Keep strong and carry on sparkling!

Shazza xx

[Mags2710]

Hi all
Fell twice this week while walking the dogs wish the ice would go away!
Out shopping today with my daughter, tried on some hats, got a bit upset when a handfull of hair came away.
Out for a nice meal with OH and went to the pub, fluids intake well up past 2lts tonight. lol. No need to worry about dandruff on my shirt, lots of hair instead. Head still abit tingly and sensitive when touching it. If I go shorter with my hair it will be clippers, don't know if I'm brave enough for that.
Keep sparkling. xxxx

[Guest user]

Deeh: Thank you I am hoping it won't be so bad on side effects but will admit to dreading the cold cap again:(
I am prepared if my hair does fall out already got a head scarf and a couple of wigs in readiness don't get my wig from the wig lady for another 14 days, my head is very itchy though.
Col well written again I always look forward to your poems they cheer me up.
Well christmas decs up and all xmas presents bought just a few things left to get for xmas dinner and that I hope is me finished hoping I will be capable of cooking it 🙂
I hope you have all had agreat weekend Stay Strong my fellow sparklers xxx

[Guest user]

Happy birthday SLM!!!!!!!

Cool pic jellymould!! you look fab!!!

Hello to everyone else. I went to see Santa today in my wig - didn't seem to frighten any kids so that's good. Love to you all!
As we're all a bit hair obsessed, I've been at it again.........

There once was a girl with no hair,
Who said it's so terribly unfair,
It used to be lush and now I've lost my bush,
At least I'll save money not buying Nair.


Losing your hair comes as a terrible shock,
And you worry you''ll look like your dad in a frock,
It's suddenly chilly and you feel like Kojak,
And if you hear ' Sian O'Connor' once more, you'll give them a whack.

I really don't like it as it's full of patchy bits,
But on the plus side I won't be getting nits,
You get on with it don't you but it still feels so mean,
Let's give it a polish - now where did I leave that Mr Sheen?

[deeh]

hi everyone
yvonne 62 - not sure which treatment you on but i had 2nd FEC on tuesday and feel loads better than after 1st treatment - not brilliant but not so bad. like you i was dreading it - probably more than the 1st time (ignorance being bliss and all that) but i have been surprised. fingers crossed for you xxx
ive had my head shaved by my son today - also had a couple of banadanas delivered from annabandana - i started preparing for my hair to fall out before i was even sure i had to have chemo so not very distressed - ive always had a love/hate relationship with my hair so desperately hoping that when it grows back eventually i can do something with it!!!!
love your pic jellymould - been trying to upload mine but cant master it at moment - maybe get someone to do it for me sometime.
SLM272 - hope you have a lovely birthday and enjoy your night out xx
im hoping to do some xmas shopping over the next couple of days, then my lovely daughter in law and grandkids are coming wednesday to put xmas tree up, then having 4 days of rest and isolation to try and stay away from any nasty germs flying around - dont want another stay in hospital.
im actually starting to look forward to christmas now and hope you all are too - i know its going to be hard for some of you, but my chemo was due xmas day and has been put off until 27th so im really hoping to be able to enjoy xmas and forget the dreaded chemo for a couple of days.
love and best wishes all fellow sparkles, its the time to sparkle now if we can in some small way xxxx

[Guest user]

jellymould I love the pic .

Ok I started losing a bit more hair today not happy about it but if I don't start losing it in clumps then come my second chemo on wednesday then I will use the cap again.
Really not looking forward to second round of chemo the side effects and everything that goes with it.
Got a heart scan monday and have to try and fit in a dr apppointment the next day before chemo because I know I am going to be bad again, not looking forward to my tum blowing up and in pain every couple of hours plus the tiredness that goes with it hope I am as strong as you all seem to be.
stay strong xxx

[jenny12m]

Hello lovely sparklers. I'm so sorryI have not been on here for a while. I have a laptop for working from home and sign off forgetting to check in.
1st FEC wasn't too bad really, but have to be honest and am hating this chemo phase. Took lots of anti sickness meds so was not sick at all, but , like Pascal, felt better after day 5. Am taking Filigastin injections to boost immunity from day 4 to 10, is anyone else taking these? My ex nurse friend does them for me as I am too chicken to do them myself. I have heard that one of the reasons chemo patients are given them is to save money and that the patients don't get admitted to hospital with infections as that costs the hospital more money.
CK1 sorry to hear that you have had to stay in hospital. Hope you are feeling better.
I had the normal se such as constipation -I rang a friend from Sainsburys saying - what's that tea you gave me to help me poo? The other shoppers were not impressed. Anyway, it's peppermint tea and I had pooed within an hour of taking the stuff.
Got oral thrush like Shazzaboro, but I had to go to the GP for antibiotics. Jellymould - I ask the Onc doc if I could have it on prescriotion for my 2nd FEC (yesterday), but he said he would not prescibe it in case I don't get it, he only prescribed a mouthwash instead.
A while ago Cybele mentioned empathy from the Onc staff. Well on day 4 of 1st FEC, I had to go into the hospital pharmacy since they had only given me 6 injections rather than the 7 stated on the package. While I was there, I popped into the ONC suite to show them my white tongue. They had not told me that thrush was a se and I did not know what it looked like. Well the staff nurse I saw was not happy with me. She told me she did not know what my tongue looked like beforehand and this was not a drop in centre. I get the message I said, I won't do it again. I never rang the unit again with any worries after that. Talk about lack of empathy! She could have said, why don't you pop to the GP. When I saw the Onc doc for my blood test and pre chemo meet, I told him about her, she could not have been nicer yesterday, if a little insincere...
I started to think it was me being oversensitive. I have had a few nights when I cannot sleep, like Cli123, waking between 2-4 am and not being about to get back to sleep. Am reading Peter James detective books to distract me.
Shazzaboro - I pressed to get my prothesis in October or I was going to have to wait until Dec. It felt so much more comfortable than the softie. I was shocked at the size of the box too! When I got to my mum's she got her's out too (she had a mx 26 years ago), I think she was envious that mine was bigger!
SuziSuz - I was so pleased to be at a dinner party 2 weeks ago that I did not get home until 2am, really late for me, but my se was the all night keeping me awake farting!! Wore one of my wigs to get used to it even though I still had my hair, and I kept it on for 6 hours, I was surprised I would not be more irritable with it on.
On the hair front, I could not make up my mind what I wanted. I visited a local charity called cancerhaircare.co.uk as they are local to me. They have some great videos on line about hair loss. They recommended having my hair cut short when it starts to fall out. Started to fall out day 13 and 14 so my hairdresser cut it really really short and I wore my NHS wig every day since then. But indoors I wear one of two indoor caps, but I was getting sick of the small hairs on my pillow, in the sink, in the dinner, so yesterday I went back to the cancer hair care charity and had it shaved. Certainly is cold wothout your hair.
That's enough for today. Hope I have not bored you to death. Will try to write more often so that I can write shorter notes.
Phil - love your head shot. Col123 love your ditties.

[Guest user]

Thanks for that best wishes to all xxxx

[SuperSusan]

Hi Gritty, I have only had 1 chemo session but I have had horrid aches at the back of my head going down towards my neck for 2 whole days. Last night, I couldn't lie on one side at all due to the pain, but after some paracetamol it subsided, and now today it seems much better. Stick with it, it should get better. Susan x

[Mags2710]

Hi all, sorry to hear some are having SE, hang in there.
Stellanbranska- the nurses always made sure that the cap was tight fitting and it was changed every 20mins. In fact they had me in a head lock making sure it was tight. lol
Hair coming out a bit more, son who is autisic (16yrs old) keeps telling me my hair is on my jumper. Wasn't sure just how much he was understanding re cheom. Told him about my wig and he just said I could wear a hat or bandana. So he must be taking more in than I thought.
Think I'll give the cold cap a miss next time and just wait for it all to fall out.
Went for a hearing aid check, I just got it 2 weeks after my op. The technician thought hearing deteritation was a SE of chemo and did another hearing test which was fine thank goodness, just getting use to everything sounding loud.
Night sparklers
Big hugs.xx