Hiya all
hope eveyrone okay, well as much as possible. Having a tiring day, dunno whethers its cos Ive started painting or work so gonna try and not do too much, wanna be fighting fit for chemo no.3. surrounded by mess and clothes in spare rooms etc. is hard work but I suppose when decorating is finished I’ll have to have a proper tidy up for a change.
chemo brain is so much with me - forget things at work in a drop of a hat, got so much home paper work and appointments to sort out but brain doesnt wanna keep up, had to buy a diaru (what a hard job that was mid year) to put appointments in gonna have to rejig as 6 in one week an hour away! well off for some brain food - having a meringue withdrawel sympton none for 5 days!!!
Heres to a better few days for everyone
x
p.s. Lily cant believe you could do a hair cut - you should have kept it, glue gunned the ends and made a fringe for inside hats!!! my stubble keeps growing back between treatments and Dennis still haning in - let us know what goodies you get at look good feel good session
x
My hair is now just annoying me. I’ve got the point of “Off with the hair” but can’t actually be bothered and don’t want to knick myself with the clippers.
Peking duck is in the oven. Preparing cucumer and onions myself. M&S do a lovely one and I see no harm if you wash and prep the raw bits yourself. besides my Nuets were good yesterday so can take a little risk at the moment, just have to be sensible don’t we.
I was nauseas last night so I had a nux vom and then the first of my ondamet things (apart from the one they give with the chemo).
I swear it’s because I hadn’t put anything in my stomach other than liquids and was rumbly. So I had a nux and a couple of rich teas while laughing at the blues brothers to distract me (everyone sing… everybody… needs somebody… to love.)
I did also have a little puff of something that helps with nausea and stress and also gives you the munchies… you know the thing… think herbal cigarettes, desperate housewives and brownies… got it
I smoked that when I was younger and friends told me of a few people they knew who have dealt with chemo using it to assist… needless to say that hasn’t been mentioned to my onc but has been pretty thoroughly tested.
I’ll leave it at that but it is part of my remedy kit.
Lily… congrats with the hair. I think half of the battle is getting used to the fact that we’re changing. I’m alternating between thinking “it’s only hair” and “Arghh” when I take the buff off.
Look like a baby I do
Lorraine. Hope it passes soon. Hugs.
Niki. Decorating can help keep the mind of things but I have to admit that I nearly had a bit of explaining to do when going in on Monday… covered in bruises from finishing the camper at the end of last week… be really really careful and wear gloves, even just rubber gloves it’s amazing how hard it is on your dry poorly little hands.
Oh yeah Lorraine, this made me giggle last night (that and the herbs I think) but I have your mosturiser (swaer by it actually)…
Nuetrogena Norwegian formula: Everyday repair body lotion… sounds like you need it hun.
hope youve all had a reasonable day today. went into town today, but drained had to keep sitting along with the old ladies, getting a little bored of resting but got no choice at present. hunger pangs hanging around never mind at least my awful days will soon be over. i will be thinking of all you coming up to next dose, especially you nicky.
anyway chin up girls keep it in the day.
lorraine x
Hey Lorraine, have you tried talking books. It’s about the easiest form of entertainment going, that and meditation tapes.
Anyway hang in there.
I’m still going, but I’m sooooo sick of water now.
On the plus I did just tell the inlaws that they will have to stay in a hotel. I feel bad for that but I can’t cope with trying to get anyone else to follow my strict rules and I can’t stand outsiders (anyone but Tommy and I) touching anything in the house. I have to follow them with the anti bac… paranoid or what.
anyway night night all. wiped now, chemo nurse was right, steroids make you hyper (hence the feed me feeling) and the chemo knocks you back again.
And I’ve spotted a couple more ulcers starting already… mouthwash here we go.
Hi
Nicky I guess it is back to the keyboard then as you are not in this area, shame. I had to laugh at you typing in code, don’t you realise none of us would even notice!! I didn’t think to keep the whispers of hair, should have though. Lisa take it easy if you have a lot of work to do as well, number 3 is supposed to take the puff out of you for a bit longer. We will know soon enough, too soon as far as I am concerned. Everyday poor you, I know what that feels like too well. Was that number 3?
The look good feel better day was brilliant. It was a bit of a drive but my car has been just coasting round the village so a big burn up was good for it too. It was a bit like a Dr Who episode that we all started off looking like non descript ladies sitting about and talking. Then everyone started throwing their hats, scarves and hair off in frustration! Every time I looked back to the woman demonstrating, someone looked different, which was giving me the giggles because they were doing it in the middle of a conversation with mascara in one hand or trying to do lip pencil. It was an excellent event and they really went to a lot of trouble to help us. I must have over £200 of products in total including Dior ’ pure poison’ large perfume, channel blusher, clinique moisturiser and eyeshadows, YSL pencils, about 18 skin care and make up products in total not forgetting Thorntons fudge. I see it is not just me that cannot remember anything, that makes me feel much better. Angie have I got the wrong person or were you having trouble with your arm? I just wanted to wish you well.
Hope anyone I have not mentioned is ok, cannot turn back a page or this will vanish again. Thanks for reminding me about the meringues, how could I forget them? Got sidetracked by a large baked pear and almond sponge tart, which was heaven.
Take care
Lily x
Event sounds good Lily an fudge, bring it on - did they show you how to draw brows - mine are hanging in at mo.
Angie - hope it goes okay
Everyday - hope things improve soon
Nicky - hope all well
Hi
yes I was given an Yves Saint Laurent eye brow pencil. You hold the pencil at the side of your nose pointing up to eyebrows and dot where your eyebrows would be. Then rotate pencil,( keeping the bottom of it in the same place ) making little dots along where the eye brow would be. Then do sketchy little lines to join the dots up and brush with the other end of the pencil to make a less obvios line. It works really well if I have explained it clearly enough. My Dennises are black and thick so did not even show up as they gave me a light brown pencil, but ladies with no dennises looked brilliant. Try it and let me know if this is not clear because it was very clever!!
Hope you are all ok, except Nicky who will understand when I say I am hoping to hear you are not, because that means you got your dose. Everydaymatters you sound poorly on the other thread, are you any better today?
Hugs
Lily x
Sorry to winge but i feel really low. I should be going to my 3rd cycle of chemo today, but really don’t want to go. Got news from work yesterday that my entitlements run out on the 31st July. When i was first diagnosed with BC in february, the company told me i would get 6 months on full pay and then half pay after for up to a year. Now they are telling me because i have not been there long enough for full entitlements. I had worked there as a contactor for 2 years and only went permanant in january. I really don’t know what to do. Financially we won’t be able to cope paying the bills, with just one wage. I would love to work and have chemo at the same time. The place i work is a large office and as always got bugs and viruses going round. Was advise by the hospital not to work while going through chemo. I feel like given up my treatment and saying bollocks to it all. I will speak to the hospital this afternoon.
I know there is people out there worse off than me and i keep saying that to myself. Sometimes things do hit hard at home!!
You should have a chat with your Macmillian nurse as they know a bit about this. Also look on this site for the info on Employ.
Out of interest were your working for them full time as a contractor as that does actually change thing. I started a full time contract job back in Nov and was DX’d 2 months later so hardly any time to even get settled but I do know that if you’ve been there a while things can change, especially if you were full time, hopefully the macmillian people can explain it to you as it’s all tangly tax stuff, eg if you work more than half time for just 1 company they are obliged to employ I think. Can’t remember the details.
But Hun I’m so right there with you, first this disease gets you operated on, then interminable waiting, then drugs like chemo. When it starts threatening our futures it’s bound to rile us big time. Talk to the macmillian people, I’ve been told by an old friend who’s a BC survivor that they’re good with this stuff.
Is there any work you can maybe do from home? Or a few days in the last week before the next dose. That would be my choice if I worked in an office as I would be worried about being out of it for too long but each to their own. The area of programing I work in moves very very quickly so being out of touch for 6 months would put me a year back so at the least I’m staying up on the research for my brains benefit… what do you do if you don’t mind me asking?
Winge on hun. I’m day 3 after fec so loaded with anti sickness, steroids, chemo and my period started this morning. I could kill something if it just looks at me funny but am fortunately too heavy to move LOL, and poor OH is in bed with a migraine, and my small network of half a dozen computers are playing up and that’s just the ones at home (I suppose they are all a bit old now).
calm, calm, calm… waaaah.
But seriously Kirsty you’ll get through it and do not delay in registering for any benefits as they can only backdate so far I was told.
i know how you feel, we would be able to relax a little easier, if not for financial problems. i started a new business in october, and took out a loan for £15000. never having lent a penny in my life. i stupidly didnt take out insurance, because it was easier to be sure of making payments without.
i intended to try and work through chemo too, but i have just not felt able to. lucky enough i have some volunteers who help. but the business is only running on half the hours., i have decided i cannot take on the new lease which is up in october, because i am so unsure about the future. but to be honest i have just had to let go of worrying because i havnt got the strength, and what ever happens our health is the most important.
my husband is in business for himself and it does put extra strain on them, being only wage earner. and sometimes it makes me feel like not asking for money, at present i have a little left but when it goes , i will feel it more. ( not even being able to treat ourselves)
as far as the loan goes , i am probably going to have to pay off with money my mum as put by for my inheritence.
all in all, its dismal really, but hey ( were living to tell the tale, thats a blessing
take care
lorraine
I decided i would be stupid not to finish treatment, so i went for ‘Round Three!’. I spoke to the MacMillian nurse and she was really helpful and sympathtic. She gave me phone numbers to get in contact with the local benefits office. I came out feeling a bit happier knowing the help is out there.
My job is a Technical Publishing Support Engineer and computers are my life. I do alot of programming and writing. The only thing is i can’t bring work home(even though i begged on my knees to work from home). The job i do needs security clearance, so the answer was no.
One question i hope someone can help with! I have one more cycle of chemo at the hospital and then go on to tablets (Xeloda, think thats how you spell it). Are the side effects the same,better or worse. I was thinking of going back to work while taken them if possible, even if it’s part time.
Hi,
sorry to hear about your money worries. I am a bit better off because my full pay does not stop unitl mid Oct and then half pay until march 09 when it disappears totally, but I am still really concerned. I will still be in chemo when the pay drops. We are thinking of taking a loan to cover the low pay months.
Now I have done a little foot work on this and hope it may help. Once you have had cancer you are covered by the disability act, this gives you a lot of extra rights. I don’t know the exact rights but you could probably look them up or go to citizens advice while off. I think this gives you the right to alter your normal pattern of work and type of work eg if you lost sight in an eye you could not drive lorries, etc. I was told that we basically dictate and they cannot do a lot about it. My boss told me this and she is holding her own as to the hours and amount of work she does. Secondly Macmillan help with finances and travelling costs and also give financial advice to anyone with cancer not just terminal cases. You need a leaflet to explain it but they take your income , deduct certain things like mortgage/rent and then you should have £100 per person in the house per week, if my memory is correct, I read it but do not have a copy. You can also get mortgage holidays with a few months off.
Kirsty look up the TACT arm 3 or 4 threads because they have all started xeloda and some have had a couple of doses with varying outcomes. Why not tag on that thread and ask the experts. I asked about my situation at work and was told I would qualify for sickness rights on my own merit, not taking into account my husband’s income.
Good luck everyone and hope some/any of this helps.
Lily x
Just to let you know my chemo went ahead on Thurs - hurray! but going through the nausea bit now - boo! Felt pretty rough when I came home but I’m sure the nurse didn’t put all my anti sickness drugs in before chemo started so must watch out for that next time. Very tired and thought this was the bad FEC No 3 as has been described on here before. However once I got into my drug routine (doesn’t that sound desperate?) I have felt OK but still quite tired so dozed yesterday and went to be early as well and at least had a good night’s sleep, unlike the 1st ‘steroid’ night. Taking it easy as I’m sure my body is telling me NO to cleaning ironing, washing etc so will just have to sit by and let the rest of my family get on with it with a bit of structural criticism from the sofa
The other good thing is this was my half way point so really relieved and glad I’ve got this far and it’s not been too bad - obviously this could have the same jinx as the ‘hair thread’ so I’ve only got myself to blame. Just have to work on keeping the neuts up for the next one. They hadn’t exactly jumped right back up but were OK for the chemo. Guess it’s back to the strong tasting manuka honey this time (an acquired taste!) and make sure I get plenty of sleep. Anyone know of any other ideas to keep the little wotsits at a good level?
Hope everyone else recovering is doing well and all those having treatment next week are making the most of the weekend.
Hi everyone,
Nicky really pleased to hear you got your next dose done and half way is fantastic news. Congratulations. Just got to fight your way back out of this one now.
I agree housework is def off the cards. I think resting more must help as it gives your body less to do so it can work on repairing all the damage from the chemo drugs. A lot of people say mushrooms are good but as I hate them it is no good for me. Will tell you how I get on when I go in on Tuesday for epi number 3. My regime is not going to work, switch off the alarm for the first week or two and eat what you feel like. ie just let your body do what it needs but I realise this is not a possibility for everyone, so sorry. I was ill and got a temp after dose one, so will be interested to know if my neuts are still dropping in a month when I have been well. I admire people working but I just couldn’t teach secondary kids at the moment, they would all get the better of me (instead of just some!!). It is rather upsetting though because I am trying to keep a grip on school life and job changes so that when I go back I know what is going on. I will have to teach on my first day back. However they have sent me to Coventry (supposedly for my own good!) and I just keep hearing about people taking my classes off me for the next year and getting what is left. Now I have heard that someone has taken most of an area where I get extra pay for running a department, which is even more upsetting as I worked for that promotion. I cannot find out more, as sent to Coventry, but it will all be done and dusted by the time I get back.I think I need to find out my rights and get ready for a fight! Will start a thread and see if any experts on line.
Enjoy the weekend everyone if well enough and Lisa last few days of fun!
Lily x
well done, another one over. did you feel anxious at all this time, i just didnt feel up to it, but saying that its over and done with now. just noticed you mentioned people saying 3rd one can be difficult. i have definatly took a little longer in recovering, but dont think about that too much, because our bodies seem to respond how they want, and i was expecting the 2nd to be bad after listening to others, but i breezed through.
i dont think there is a lot we can do about the neuts,because if you are like me, you seem to just eat what you feel like. i wished i had drank more water, but i couldnt stomach so much this time.
Like you say forget about the housework, dont use energy that can go towards healing, are bodies need tlcare more than the dishes or floors.
i just tend to go along with what our bodies tell us,
anyway hope nausea settling, have you tried the travel wristbands, i am going to next time, now my son has returned them after his trip to france.
my thoughts are with you take care
x big hugggggggggggg
Snap…i had my 3rd on Thursday also. Your doing the right thing in resting and letting the family do the housework. Like you i am feeling tired and nausea so taken it really easy. I am in bed with the laptop and staying out of the way. I have learnt over the weeks that we all have to listen to what our bodies are telling us.
Big hugs to all who have just had treatmen,t or who will be going through it next week.
Hiya
Nicky glad you had number 3 half way there, hopefully joining you next week
Kirsty hope you are feeling brighther
Everydaymatters travel wrist bands seem to help me
Lily hope you are enjoying your last weekend, Im shattered with doing so much so just wanna chill with a glass or two of wine but committed to going to freinds for anhour.
Hi ladies,
I’v managed to breeze through 2nd chemo.Anti-sickness stuff I got this time seem to be better.Just a bit queasy on Thursday.
Kirsty,I think you should speak to someone in HR re Employment Law.There was a change in legislation recently to cover temp staff which effectively gives equal rights to permanent staff.I’m going into work one day next week and will have a look for the stuff I had sent to me at that time.I didn’t pay much attention then as I am permanent.You are of course covered by the Disability Discrimination Act.When you go on to half pay you will also be entiled to Incapacity Benefit which may help.It may also be worth applying for Council Tax Rebate and possibly,depending on your circumstances Housing Benefit for your mortgage.(This is a little more difficult,but you should make enquiries now at your local DWP office.) If I can think of anything else I will send you a message.A bit tired tonight and not thinking very clearly.
Having my hair shaved off on Tuesday as it looks as if we have a mangy sheepdog moulting all over the place just now.
Keep well girls and have a nice weekend.
Tricia
hi girls
hope you all making the best of weekend.
anyone feeling rough, hope you soon feeling better. but most of all take care of yourselves
god bless.x
