I haven’t looked at the forums for a few days so I had a lot of catching up to do. Best of luck to those of you who are just about to have your first FEC. It’s a bit daunting when you start. I felt pretty anxious about my first one but the nurses were so lovely, and everyone in the day case unit so sensitive and friendly, that the actual experience wasn’t nearly as bad as I’d expected. I’ve got my second FEC tomorrow and, now that I know what to expect, I feel a lot braver than I did the first time.
Jackie - How are you doing? I had my blood test yesterday (Tuesday) and I haven’t had a phone call yet so I’m assuming everything’s o.k. for tomorrow. My appointement is in the afternoon - when’s yours? I’ll send you a great big virtual hug before we start!! I’m sorry you’ve had a bad week. I’ve been quite low as well. I felt better in week 3 than during this unexpected week 4 but I think it’s psychological/emotional, not physical. The delay made me really miserable and worried and the fact that it coincided with my hair falling out didn’t help.
Ah yes - the hair fallout!! Why did we ever think a red carpet would be good for the stairs and landing? Nice and warm and welcoming - but it shows up every hair that falls. Anyone walking into our house this week would have guessed that we own a particularly shaggy Olde English sheepdog. (We don’t - it’s just me that’s been moulting everywhere.)
Now that I’ve come through the trauma, had my hair cut very short and found a lovely natural looking wig, I can laugh about it. But it’s been a very hard week.
I’ve realised that the cold cap didn’t work because my hair was so thick that it insulated my scalp so it probably didn’t ever get cold enough. Ho hum. I’d naively assumed that having thick, strong hair would be an advantage. If anyone is thinking of trying scalp cooling, it might be a good idea to have your hair thinned a bit first. I know this sounds perverse but anything’s worth a try.
Anyway - Jackie - hope everything goes well for you tomorrow.
And everyone else - keep on eating those nutritious soups and luscious vegetables. I’m loving stewed plums at moment. Add a little cinnamon, ginger and honey to the water. It’s so warming and the red colour gives you the feelgood factor.
HI
Anne, always so impressed with your personal mails as to what we are all up to.
I had a great laugh with a friend tonight (it is the best medicine , corny but true) He has just come through some very hard times , brain tumours but had such a laugh about staples , scars , beanies etc so he really cheered me up bizarrely…
I feel fine but dont know about you all , on the day of chemo I feel contaminated and just want to drink loads of water and feel like I’ve flushed it away. So doing well physically , little bit nauseous , nothing a large slice of bread cant cure , and just generally feeling like a dartboard.
have been having dark thoughts recently so I need to get rid of those somehow ? and just keep repeating I’m going to be fine. I said something to OH in a bit of a heated discussion shall we say and cant get the words out of my mind. I guess we’ve all been there , life has to carry on as normal , warts and all
Good times ahead hey …
Anne as you are taxing first I’ll join you on the tax boards
Just read your post and thought you needed a hug. That’s a bit hard to manage so I’m posting straight away, just in case you’re still online, so you know there’s someone listening to you.
Oh, those dark thoughts. I’m the same. I haven’t found a way to banish them yet. Inevitably they mostly come at night and I just have to tell myself that things won’t feel so black in the morning.
I know I can’t say anything to make it better, we all have to find our own way through. Anyway, if you’re reading this before you go to bed, I hope you have a good sleep - and keep thinking of those good times ahead.
Thanks Caroline ,
I suppose you are thinking what she doing up at this hour ? off to bed now . I’m my own worst enemy as far as sleep goes.
My daughter went to see the Nutcracker at Covent garden tonight with dad , when she came back she was super excited about how magical it was , gave me a big hug with a beaming face - now that cheered me up.
My friend just sent me a pic of his head too ! a massive scar down the middle . If he can keep smiling so can I .
I had such a laugh this morning - was coming down the stairs, and had to keep glancing round because I thought someone was following me, because there was a strange shadow on the wall…the shadow, I discovered, was mine, but looked so strange cos I had forgot hubby clipped my hair to a grade 2 last night - and didn’t recognise the big round head with sticky out ears on the shadow !!!
Cally - sometimes I manage to post individually - but there is so many of us now do not want to offend if I forget someone.
Now what you mean about dark moments - have not had any for a while - not sure why though.
To whoever posted about going out and about - I have tried not to let this bloody thing take over my life - so as far as I can am keeping to normal - so yes going to navitity play, seeing santa, going to pantos etc. The only thing I am not allowed to do is work (feel I could weeks 2 and 3 on fec - not sure how that will work with the dreaded tax) but I work with sick children so woould be putting my health at risk so not allowed. really miss it though. Have even started planning when I could go back - at least it would give a bit more of normality.
Margaret - Know what you mean about shadows - when OH first shaved my head to a grade 0 , walked past the mirror and had to keep going back - did not recognise myself. Ok about it know though - if anything keep forgetting to put scarf on when opening door - poor post man and neighbours.
My OH would like me to go commando (head of course) but not confident to go out like it.
hi every one
every time somthing comes up and I think I’ll ask/tell you, someone has just had the same experiance so I dont.
just had 2nd FEC wed and am ok havnt had many problems (keeping fingers/legs crossed) just memory/word loss, bit tired cant sleep, weird dreams,but the worst was this weekend my hair started to come out friday just little bits that was ok, saturday it kept getting in my eyes & when I pushed it away loads came out in my hand, cried my eyes out when OH got home,sunday was better found a scarf tied it up no escape ha! monday fed up so gave hair a good brush till no more came out washed it removed more from plug hole,did the same tuesday, wed nearly all gone, OH will be clippering the last few bit away today, so margaret I shall be looking out for the stranger behind me.
been out in hammy the wig and am getting used to it, dont ask so often "is hammy ok?"when I think its moved, sounded better than having to whisper quite loud as he’s a bit deaf “has it slipped?”
so thank you all for answering my problems before I ask its nice to know I’m not alone & cheering me up on the down days
I have only posted on here a few times just before and after my first FEC. Have not been too bad reallt apart from my apparant allergic reaction to my anti sickness pills the day after. Tight chest, stiff jaw and neck. Went into hospital overnight. Kept telling them I thought it was the pills but the doctors and nurses kept fobbing me off. Until it got gradually worse and agreed with me Gave me some dizapan (muscle relaxant) and was fine within ten minutes. Only took them until nearaly midnight to work out what was wrong, think I should become a doctor after diagnosing myself Since then every day I have felt better, but was a bit sill and forgot I had just had chemo and carried on mylife as normal, shopping, going out with friends etc… Last Friday had sore throat which got gradually worse over weekend but kept going forgetting I have no immune system to get rid of it. Doh! Woke up Tuesday morning and thought would take my temo for the first time since chemo. It was 38.7 - oops. Called the hospital and went in, stayed in overnight as had tonsilits and white blood counts dangeroursly low. Had intravenous anti biotics and out yesterday. I have now been lyingi in bed all day by the order of everyone. Got raging cold now aswell!
I will certainly know better for next FEC which is scheduled for Monday but having bloods taken tomorrow so fingers crossed. I will not be going out between days 11 - 14. I think I am invincible that’s my problem
A tip for anyone that think they might be gettingan infection. Keep taking your temp and don’t leave it thinking it will clear itself up, coz it wont. That is my top tip although I suppose it is common sense really which I think my chemo brain had stole from Slightly nervous about second FEC because of reaction I had forst time round. They said the side effects were more common in younger woman, has anyone else had this reaction?
Hugs to you all - Oh and my wig came today, its off EBAY “The natural collection” from the states. It is really nice and has cheered me up. I had the cold cap on Nov 26th, hair is still in tact, although have a few small sore patches and have noticed a few strands coming out, (well with the help of me pulling at it) but so far so good. I have not washed it in a week (it’s very short now so does not look too greasy!) Scared when wash it it will just all come out. I do have this tendancy to keep pulling at it though to check it is still in tact which isn’t really helping.At least I know I have a wig now so not really too bothered, just bit tired of the sore patches
Cally - entirely agree with you over the sleep thing - I’ve always been a late to bed person - until now. Have finally realised it just isn’t doing me any good.
Anne - I went out this morning with no headgear on - just my grade 2 head ! Hadn’t realised just how cold it was, had to stop and buy a hat! Ihave just bought some buffs - I have to say they are fantastic - so easy and so comfortable.
Hi mrsratty - lovely name! I haven’t been out in my wig yet, I don’t feel at all comfortable in it - maybe I’ll get used to it. My hair came out in a tram line up the middle of my head strangely enough - my parting just kept getting wider and wider! Haven’t got used to the grade 2 yet - hubby says I look like some feminist activist off Prisoner Cell Block H - thanks OH !
Hi to you too Morri - I was pretty much the same as you - considered myself invincible and that C wasn’t going to stop me doing anything. Now I’m full of the cold, full of antibiotics and dreading them cancelling my next FEC next week - I will definitey be putting my feet up through the ‘danger days’ next time!!
I keep taking my temp too - though there is something that puzzes me - if 37 is the normal temp therefore 38 is high - if your ‘normal’ temp is only 36 (which mine always is) does this mean that 37 is high??? Stoopid question I know but just wondered…chemo brain strikes again lol
I have been asking all my friends to take their temperatures too just to check my thermometor is working ok. Most of theirs are low to mid 36. Mine is down to mid 36 now. It says in “my little book of chemo” that if your temp is 37.5 or above over an hour period to contact hospital immediately or over 38 at any one time to contact hospital immediately. I don’t think 37 is particularly high. God I keep sneezing as I am writing this, all tucked up in bed. My friend just popped in for a cuppa and I scarily modelled my wig for her. Now this friend of mine is the best person to judge as she is brutally honest. I took a deep breath…but she loved it she said I look sophisticated Better than my own hair.
Another friend has just popped in so will catch up later
Have just got back from weekly food shopping (yes, I know how to have a good time!) and have bought every pulse, bean and grain known to man - just have to do something with them now. Think may be bean salad for supper (OH won’t be too pleased, he’s a bit of a meat and two veg kind of a guy!)
Seem to be loads of coughs and colds out there, just that time of year I suppose, but it’s hard carrying on with normal day to day stuff when you’re trying to avoid runny noses and hacking coughs. My son’s Xmas Performance tonight (2nd one, went to first on Tuesday eve) so will spend evening huddled down in scarf trying to avoid germy children whilst not looking too odd. Actually, a friend of mine recently went to Egypt and said that quite a few tourists wore clinical masks and cotton gloves whenever they were in busy attractions/market places - now that is over the top!!
Was really surprised when reading earlier entries on this thread that a few of us are at or coming up to the halfway mark - good and scary at the same time - like lots of us, am not looking forward to Tax, but hey, we’ve done okay so far!
Lots of love and warming hugs to you all,
Louisa xxx
ps the nutritionist told me yesterday that a really good thing for sore veins due to the chemo are red/black berries in smoothies as they are very healing - worth a try!
I was given the tip about berries too so I’m currently overdosing on blueberries (half price in my local Sainsbury’s). Who cares about food miles at a time like this?!
Really sorry to hear about the colds and infections. It’s so easy to overdo it, isn’t it? I crammed all my socialising into week 3 after my first FEC. No wild parties, just meals with friends, but I got really tired. Fortunately I didn’t catch any nasty bugs but I think this could have been the reason why my blood count was low which delayed the second treatment. Another lesson learned.
Yesterday I hoovered the whole house in preparation for my 2nd FEC today (is that a wierd?) and today my right boob (I had a lumpectomy) is very tender. Yet another lesson learned!
Take care of yourselves. Sleep is what we most need.
Hi , just to add on the food thing
Tesco do a ten vegetable soup from the fresh soup section . That basically gives you your 5 a day I think. have had it once and its rather chunky but if you want to top up your veg its a good way to do it in one hit.
I love eating healthily its just time to do it . I usually eat the kids left over fruit !
No bruises after yesterday hurrah , looking a bit pink from the epicirubin and had my neulasta jab so am all ready for the next few weeks .
caroline I know what you mean about getting ready for the chemo . I feel like I need to use my energy well . While I am on the steroids I am washing every item of clothing in sight and just getting ready for my couple of days of lethargy.
Louisa thanks for the food tips , berries etc. I buy the juices as I dont really like blueberries too much , taste more like medicine than fruit for me.
mrsratty - losing your hair is awful and we’ve all been through it. To say it really really sucks is an understatement but you do get sort of used to it. I still dont like to go around without wiggy on though. I guess the more I wear it the more it feels part of me . Like you I think the most awful period is watching it fall out, best to get rid and put it behind you. Anyone saved any hair ?? a schoolmum said she would keep some if she were me . To be honest its the last thing I would want to do .
Morri - thanks for that - if I’d read it properly (chemo brain strikes again!) my ‘little book of chemo’ says the same thing!
Louisa - thanks for the food tips - off to do my shopping tonight so berries/fruit/veg for soups will all be on the list!
Caroline (2) - the ‘nesting’ instinct prior to FEC is quite strange I find - or perhaps it’s just that we know we aren’t going to be doing anything for a few days after!
Cally - I am awful for staying up into the wee small hours, and then getting up in what is still the wee small hours - but I have to say, this last week while I have been feeling so poorly with sore throat and everything, low blood count and antibiotics - I have been in my bed before 10 pm most nights - and boy what a difference it has made. I feel so much better after a good nights sleep (not rocket science I know - but it’s taken me a while to realise I couldn’t carry on the way I was!)
hi every one
OH cut my remaining hair off yesterday, bless him he did try but its a bit patchy on top were he couldn’t quite get the hang of the clippers ( I do his so he’s never used them before). was quite suprised at how much come off. I’ve put it all in to a friut net for the spring to see if I can tempt mrs blackbird to use that for her nest instead of the coir in my planters. went out last night to see his daughter in her first uni drama she was whore no1,told us tuesday that it was only on for 20 mins,(3 1/2 hours there & 3 back got in at 2:15), but managed to get 6 hours continuous sleep thats a first for a while. didnt wear hammy but a bandana must say I looked quite good it felt right as well. found a slection of pastel beanie type hats in primark only £1 each, great for round the house & in bed.
Silly question how often do you wash wigs, and how long do they take to dry,I know different lenghts will take different times,mine is fairly short?
When I bought my wig the assistant said wash it every couple of weeks, but I guess it depends how much you wear it really. I only wear mine for shopping in town so it lasts longer than 2 weeks. I would say tho’ that if you’re spraying perfume on, do it before you put your wig on as mine seems to hold smells much more than my real hair (cooking odours too). I got wig shampoo from the shop I bought mine from but I think you can use baby shampoo, and I left mine to dry overnight, gave it a brush thru’ and it was good as new!
My eldest daughter is doing her first college drama show this week too, have had to pick her up every night this week at 11pm - not happy! Jess is doing the lighting for her show (back up career in case she’s not the next Keira Knightly!) but whore no.1 sounds very exciting!!
Viv, hope today went well, take it easy, drink loads of water, stay warm, loads of hugs to you.
Hi JJ
similar to Louisa , got advice from supplier. wash every 3-4 wks . In a basin of cold water , with fibre/wig shampoo. Leave for 5 mins , rinse then blot in a towel.
Put on shower head or similar and it will dry overnight. When dry brush through then( but not before) then spray with your wig conditioner.
My husband was quite alarmed when he stumbled into the bathroom to see my scrawny wig on the shower head. It does wash well though and is as before when you brush it. For all the moaning they are amazing things and behave very well !
Viv - Good to hear it went okay (in the end!) and you’re feeling well, hope it stays that way. You’re absolutely right to take it easy, we had early start this morning to get out and watch our son play football - it was freezing! Oh well, last game of this half of the season, team bowling treat next Saturday then a break for Xmas.
Hoping to get Xmas tree tomorrow afternoon, am sure it will be horrendously busy, but hey!
Husband went out yesterday to do bit of Xmas shopping and came back with a new telly! Apparently you need a high definition tv to enjoy football on the box - do you think it’s the same as needing a Prada label on a handbag in order to fit all your make-up in?!!! In my dreams!
Am feeling much better today, good in fact. So each of my three treatments have been quite different - first one really sick for a week, then okay for two. Second one fine from day one for the whole three weeks. Third one, really run down for the first week and sickness, now okay (just thought might be of interest for you first time feccers?).
Anyway, off for lesson in how to operate new telly - may take some time I think as brain is particularly slow today!
Viv - glad you got the fec in the end. It is amazing what we wish nowadays!!! Take it easy and rest.
Louisa-Hows the tv teaching going? Like the idea re the prada handbag - but don’t we need two to ensure they match all our outfits!!!
Hope everyone else is well and enjoying the week-end. Are we all organised for Chistmas?
I have just today started a thread 1st Tax - this thread has been so supportive and amazing - not sure where I would be without this site. Not sane thats for sure!!!(mind you my friends would say - I was not sane before all this. lol!!!)
Has anyone heard from Lenise - hope she is ok?
Cyber hugs to you all.
Viv - so glad you got your fec sorted in the end. The muggy head is exactly how I felt - was never sick just nauseous. As for not overdoing I’m afraid as I felt so well today I have gone absolutely mental - I’ve sanded and waxed my last window, painted 2 walls in the dining room, painteed one wall in the living room, hoovered and tidied ready for the decs and tree going up - and now I’m collapsed in a chair !! Still feel well - just a bit tired lol. I think I’m just panicking that I only have few days before my second fec next week - and as the first one knocked me for six - I’m thinking I’m gonna get nothing done in the run up to xmas day!
Louisa - my OH did something similar a few weeks - nipped into Tescos for a few things and came back with a new TV! We ended up having to ring the helpline to get it going lol
Anne - I shall be following the Tax thread with interest - it’s a few months till I start because I have a brak for rads between Fec and Tax - but any tips will be appreciated!
Gave me some dizapan (muscle relaxant) and was fine within ten minutes. Only took them until nearaly midnight to work out what was wrong, think I should become a doctor after diagnosing myself 