Hi All,
Dates are through and I start my first FEC of 6 on Thurs 24th April. Am going to give the Cold Cap a run for it’s money - and was wondering about putting Conditioner on first, and any general tips for making the Cold Cap more bearable…
I have heard that you develop a sort of Chemo association with smells and tastes - someone told me not to drink my favourite tea and eat my fave food as I will never want to touch it again!!! The same with shampoo & Conditioner.Anybody else experience this?
All advice greatfully accepted!
Im also starting my first FEC on 24th …not going to give the cold cap a try as i suffer from bad headaches, have so many funky hats and scarfs at the ready! be really interested to know how you get on with it. I seem to be spending every minute on the internet reading and re reading different things, am i the only one? Think i will have chocolate before my chemo see if i go of it! good luck
Ha!! Yes!!! The tragedy of the Internet is that no sooner do you read one thing that you think might be partially relevant to you, then you read another,and another…
I’ve rung my Chemo nurse - she said she will cmb at lunch-time and go through the urban myths and legends with me!!!
I’ll let you know if she gives me any tips!!!
Let me know how you feel over the weekend and good luck…!
Shell
I feel very in the dark, i have no chemo nurse as yet, although all the nurses where very caring for the two ops ive had, Ive very much been left on my own. I asumed it was the same for everyone!
Good luck thursday… from what i have read we will both be on line thursday night not being able to sleep!!!
If things go according to plan, I’ll be joining you both on Thursday - first of 3 TAX followed by FEC. There might be 3 of us online that night. I’m going for cold cap too, though my hair is so thick the onc said it was probably a waste of time. So I’m shaving my head on Wednesday to improve scalp contact. I’m going to rent ‘GI Jane’ tomorrow to watch Demi Moore doing it for a lot of money, and have a laugh.
It’ll be fine. Good chance to swan around and catch up on being really, really slack.
Good luck to both of you,
M-L
Good luck to you all for Thursday…I will be thinking about you.
Anita
Good luck to you all, it will go faster than you think. Have you read the top tips for starting chemo on here it has a lot of useful information, well worth a read. The internet is useful for information but remember that everyone is different and reacts differently, if you are not sure about something go and see your GP, don’t suffer.
Good luck
Sarah X
Well, the basic info is go for a Ph balanced shampoo & Conditioner and go for one that you probably wouldn’t use in your wildest dreams as you will never want to use it again! The Chemo Hurse suggested Dove Shampoo & Conditioner. I’m a hair snob (another OCD of mine) and use Sabastian, so using a cheaper shampoo like Dove will save me a small fortune, so not all bad news!
Baglady - the reasom I know my Chemo Nurse so well is because when I was in hospital having my Masectomy, Recon and Mastopexy, she pretty much looked after me on the day shift and I really got to like her - even though she is a typical bossy Matron - old-school Sister!! So I guess I was fortunate that she popped her head into my room when she did, otherwise I wouldn’t know who I was seeing next either!!
Emelle - I have coveted some of your previous threads and I think you are v amusing!! I love your humourous take on BC, life et al. I think GI Jane has alot going for her and my OH keeps offering to get the clippers out and shave my locks off. I keep pointing out how much it has cost him for my hair to look like this but he doesn’t seem to care!!! He would have an apoplexy if he really knew how much I spend on hair care etc in an average quarter!! I think him shaving my hair off for me is his way of getting his revenge and sorting one of my OCD’s out!!! If the Cold Cap doesn’t work for me then it’s coming off, but I’m too vain not to give it a go!!
One of my girlfriends called tonight and advised that she has been in private talks with the other girls and has bullied and cajoled them into setting up a cooking circle for me, the OH and the kids. I have told her that they had better not try to poison me in the process and I’ll be telling them if their cooking is crap!!! Secretly I am really rather impressed with their organisational skills and very worried about how very unherhanded and secretlive women can really be as I was not aware of any undercurrent going on the last time I saw them all!!!
So here’s to Thurs and to treading a frequently trodden path by many of the eloquent souls on this Forum!! See you all Thurs night!
x
Hi all,
Like baglady, I don’t yet have my ‘own’ nurse, though apparently will get one at second chemo - maybe they don’t bother until then in Finland in case they lose the patient en route (ha, ha). I asked if I could take her home and the earnest Finnish nurse giving me my pep talk looked worried and explained at length that this would not be possible. Y’gotta laugh. She was obviously thinking “these foreigners!” I have got most of my info here and haven’t broused the net much for the very reason that Shelley mentioned - too much, too conflicting. The ‘top tips’ have been marvellous & a great source of spending impetus - I now have more different kinds of ginger in my kitchen that I would have thought possible, along with all the other weird goodies variously distributed about the house. (‘Freudian’ slip yesterday when I went into my office at the university to tie up some loose ends - and do a bit of laser printing - and bumped into a friendly colleague in the corridor: “top tits” I inadvertently called the handful of printouts & we both shrieked until I got a cramp.)
Had to laugh about your hair expenditure, Shelley. I’ve always been the same, and I smiled wryly to myself as I slathered on the luxe conditioner yesterday - the last time for a while. I don’t suppose stubble requires it. I might even let my son finish the bottle! You’ve got a wonderful group of friends - what a moving tribute to ‘community’ - and woman power! On the other hand, if the food is ‘crap’, you can always smile bravely, bin it, and get OH onto the job. Now I’m really being humorous - if yours is anything like mine, I’d be depressed by the thought of his getting me a bowl of muesli. Seriously.
Y’gotta laugh, best to all - M-L
great to hear from you all,loved the bits about hair. I have short hair that i gel into a messy look. my OH is looking forward to seeing me with my new mid lengh bob!!! hes always wanted me to have longer hair but its too fine. Much better wigs than i thought, really modern. i was thinking i would come out with a blue rinse!!!
shelleyb
what time is your fun starting? mine is 3 oclock so im thinking a long day of wondering around looking at the clock! Ive been very positive about the whole bc thing, but as the dreaded time comes nearer im quite nervous, how about you? while getting things ready hats, scarfs, cooking for the freezer etc i have been fine, but everything is done now! still havent got full use of my arm from having my lymth nodes removed so not even working to keep me busy…oh well will probably do a bit of retail therapy!!
Just heard from my oncologist that all my scans are clear - liver, bone etc. A cyst in my right ovary but this is so common in women my age (50) that he says it is no cause for concern - and I’ve had one before that didn’t need an op. They’ll check it out but chemo goes ahead as planned on Thursday. Who’d have thought you could be relieved about something like that? Worth a laugh.
My appointment is at 9.30 (7.30 UK time). I’m glad it’s early, & sorry about the long wait you’re going to have to deal with baglady. By the way, it’s a funny nickname, but I hate having to call you that. Anyway, fingers crossed for all of us.
Love M-L
called myself baglady because of my huge collection of handbags, just when i think i have enough i spot another one,or when im fed up or when im happy or anytime really!!! must try and kerb my spending now as im not sure how long work willl pay me for! thinking of working part time during chemo but am just going to see how i feel.
Really glad your scans are clear, you must be very relieved.
sure to chat soon
love jo
My Appt is at 12:00 sharp. Asked f I could go earlier so that I could miss the 5:00pm traffic rush (which is when I’m told the Chemo will finish) but was advised that the drugs aren’t delivered until after lunch so there would be no point. Oh - OK then!!
Emelle - as you say - who’da thought such things could bring such immense relief!! And to be pleased to be starting Chemo?!!! Really good news though to be getting clear scans - the family might get a few extra years out of you now!!!
I have to say, I have a minor infection in the left boob, and if it doesn’t clear by Thurs I won’t be going into the drug chamber either, so I’m frantically trying to do everything possible to get the Antibiotics to work!!! Sad git that I am!!!
Friend of mine is just finishing her Masters in Chinese Medicine and has set up a practice as an Acupuncturist and I’m off to see her tomorrow to see what treats she has managed to research for me. She did say that she has found some treatments to co-incide with the Chemo so I’m really interested to see what she has come up with!!!
Jo - much better name than Baglady - the name conjures up disturbing images (!). I See you have handbag fetish - it’s all relative isn’t it?!!
I plan to work all the way through my Chemo, so am really, really hoping that when the people on this Forum say it’s doable, they are telling it like it is!!! I’m guessing I’ll be able to work 2 out of 3 weeks. I want to carry on working because I run couple of businesses with the OH and don’t like being out of control!!! Can you see a pattern yet!!!
x
“I have heard that you develop a sort of Chemo association with smells and tastes - someone told me not to drink my favourite tea and eat my fave food as I will never want to touch it again!!! The same with shampoo & Conditioner.Anybody else experience this?”
How spooky, Shelley… I have JUST posted a new discussion because I have noticed I can no longer face the foods I ate on the days I had my previous 2 chemo’s and then I came to read YOUR post…
I definitely do NOT drink any wine on Chemo day, even though I really fancy a glass after the boredom of being in the hospital!
As you have seen from previous replies, everyone is different and everyone’s experience of chemo is different even if they are having the same type of chemo. Like yourself I am having 6x FEC and this is what I can tell you after 2 sessions for what it’s worth.
It was bloody boring sitting there all day, make sure you take a variety of reading material ie a couple of magazines plus a novel that you know you will be able to get really into.
Do not eat your favourite food it is true you may have a “chemo association” where you go off whatever you ate that day - not just what you eat at hospital but also what you eat when you get home.
Next day (a Tuesday) I didn’t go to work, I was bored sh1tless another day sitting on my arse reading and watching rubbish on telly, but I know that if I had pushed myself and gone to work I’d have got too tired. On the Wednesday I did go into work but left a bit earlier as I was tired - you can be mentally tired as well as physically tired.
I have had 2 cycles out of 6 and I found that for the first week afterwards I could notice myself becoming tired very easily so I simply gave in to it and had early nights. My appetite was really “off” I was hungry but just wanted to eat very plain and very stodgy carb-fuelled things - so I gave in to it and had more chips in a week than I would normally have in 6 months! I figure my body will tell me what it does and does not want or need. The second week I was less tired and was able to face a few more “nicer” foods. The third week I felt more or less “normal” then it all starts again!
I had the cold cap alongside my first treatment, it is uncomfortable when they first put it on but if it saves your hair it is worth it. Sadly it did not work for me, but just because it was no good for me does not mean it won’t work for others, I am glad I gave it a chance. As I said, everyone is different.
Rest assured the weeks will pass quickly. What I am doing is making sure I have something nice planned for the weekends that are just before each trip to the hospital for the next chemo. This weekend one of my best friends since childhood is coming to stay, I haven’t seen her since Christmas and had to cancel visiting her on her b’day as it clashed with my first chemo. My chemo’s are all on Mondays so on the Sunday I make sure I eat well but I don’t overdo it on the booze as I have to get up early, want a clear head, and they take a blood test before they can give you your chemo and I am never sure whether too much booze would do anything to my blood (sugars or whatever) that would mean I couldn’t have chemo that day. As well as having the reading material to pass time at the hospital I also make sure I have a few things to entertain or occupy me when I get home as I hate daytime telly. Last time I bought Series 1 of “Gavin & Stacey” on DVD as I had not seen it when it was on BBC3 - it was a good laugh and passed the day. My mum sent me Series 1 of “Mistresses” because, again, I had not seen it when it was shown on TV. So I can recommend DVDs!
I told my boyfriend that if I do not feel up to going out I will tell him, but if we do go out then we just go a bit earlier, avoid really hectic busy places, and come home a bit earlier. I said I would rather go out and if I can face it because it helps me feel lively whereas if I stayed in every night I’d feel lazy and fall asleep! But again, it is whatever works for the individual.
Sorry this is an essay but hope some of it may help.
Good luck xxx
Thank you!!! It’s really helpful to see where one might be in 2 sessions time!!! Tell me - did you get the asscoiation thing with smells as well? The Chemo Nurse has warned me that it happens really regularly in her experience… Do you manage to concentrate at work, or is it pretty hard?
x
sorrry to hear about your infection shelleyb let me know how the chinese medicine goes, love anything like that! I have thought about giving it ago along side the chemo.
good to hear some positive things about working through the chemo. not only do i need to work finanially but i just hate to be thought of as “ill” .
really glad of the food tips… dont wont to go off red wine! maybe i should have a meal of pure c**p to put me off when i get back!! sorry to hear the cold cap didnt work for you, i think its one of the worse things for most people ( from what ive read )I have chosen a wig so different than my own hair, i have short funky hair and i have gone for a long sleek bob!! a few people think it wont be as bad because i have short hair… dont think people always realise how much of you is you hair… i know they mean well but it really doesnt help!
lookforward to chatting soon jo x
Jo - I reckon people say nice things about how losing hair isn’t a bit deal etc etc because they aren’t faced with it. It’s pretty hard to be empathetic when the reality is that you will (probably) never be in that position. Like you say - people are just being kind and you want to tell them to shut up and get a clue and stop being so unknowingly patronising!!! Ha!!! My 9yr old tells it like it is - she says “Mum, PLEASE don’t come to pick me up from school without a wig on if you go bald - I can’t take the embarassment and my friends will all laugh”. There’s honesty for you!! Kids don’t need to soften the blow do they!!! Having said that, my eldest is a complete Diva, so I’m guessing not all 9 yr old girls are as self-obssessed!!!
x
Hi again Shelley, to answer your question about association with smell - I cannot bear the smell of smoked paprika as I sprinkled some onto the top of my bowl of home made chicken soup that I ate on my return home from my first FEC.
If I think about the hospital and remember what it smells like, again I feel sick, especially the toilet.
I do not put on any fragrance the day I go to hospital, and part of that was just in case I DID get a bad association. About 10 years ago I drove to Suffolk on Christmas Day to visit my then boyfriend, and I set off at about 11am and my mum had had the turkey in the oven about an hour at that stage so our kitchen smelt of half cooked turkey, and I had also put on a liberal amount of some perfume that my sister had given me that morning. By the time I arrived at his house I felt sick, a combination of being hung over from Xmas Eve, having travelled several hours on an empty stomach, and the perfume was really heady. I yakked when I got to his house and I was unable to wear that perfume again!
hiya Jo, I am truly OK with my hair loss - yes I am looking forward to getting my own hair back but I don’t agree that so much of a woman is her hair, although it took me losing my own hair to realise that. I have a lot of black clients whose natural hair would never go like they would wish so they are constantly wearing wigs and extensions, scarves and hats, and they have a lot of fun with it and are sporting a different look every week, so I have decided to have fun with it too, until my own hair grows back! The most traumatic bit was wondering whether or not I would lose my hair and waiting to see if and when it would happen - once it happened and I took charge and got it shaved I was fine, I have not even cried about it. But I agree, if you are gonna be upset about losing your hair it doesn’t make any difference what length your natural hair is/was before it came out - the sight of hair all over the place is awful which is why I went for grade 0.
I’ve now got 5 wigs and a great variety of scarves! I would never have noticed how many good scarves you can get in the shops (tie rack is great) until I needed em!