and as you can see the chemo affects the brain too haha - just realised I alredy typed the bit about sleeping in earlier dohhhhhhhhhhhhhhhhhhh
Hi everyone,
- Liane Im in south london, Honor Oak Park et vous??
Everyone -with regards the insomnia, its the dexamethasone if you take it , post chemo for 3 days, instead of taking the 3rd one in the evening, span the 3 daily doses out between 8- 2pm, try not to take the 3 rd dose any later than 2 pm, its this wee b…r thats turning us into demented night owls!!! Otherwise sleep whenever you can and feel like it,
-inurdreamz2 hope it happened this week , fingers crossed xxxx
good luck with your next cycles 2/3 everyone
Julie xxxxxxx.
Hi All,
Janice, sorry to hear about your shingles, hope you’re not feeling too bad. Did you get something from your GP to ease the symptoms? My friend’s little boy recently had chickenpox and a nurse told me that even though I’ve had chickenpox, being in contact with it could manifest itself in me as shingles. However, a doctor told me that was not the case, although I could catch chickenpox again (unlikely but possible). The doctor said that anyone who’s had chickenpox has the virus still in their body (near the spine) and that the virus can become active as shingles at any time, but most likely when the immune system is low, so quite likely with chemo.
Margaret, hope you are feeling okay, not too tired. The steroids really do muck about with sleep patterns don’t they. I had my first Tax yesterday and was given loads of iv steroids so am bouncing off walls today!! Well, on that note my lovely, I am off to the Tax thread. Good to be finished with Fec and it’s sicky feelings, but am feeling bit nervous about side effects of Tax. Oh well, keep crossing them off list!
All my love to all of you still getting through your Fecs, if I can be of any help advice wise, let me know. Otherwise, loads of positive thoughts going out to you all, take care,
Lots of love
Louisa xxx
Hi everyone,
Magz175, I am as south as you are north! I am in East Sussex, near Hastings. Closer to you JulsRiz - have you been to the Haven? I have been for the intro day and i hope to go to the young women’t forum there on the 13th of Feb i think it is (a Wednesday). I do like it there. You are all spot on about those steroids - I am sleeping better now, 10 days after first chemo. Do the steroids even stop the sickness do you think? I got extra suppositories from my GP which worked better as I had my head in a bucket for 2 days but still kept on the steroids. Maybe i will give them a miss next time. I must remember to bookmark this thread so I can talk to you all again!
lol Liane xxxxx
HI all
Welcome Liane - I used to live in Hastings a very very long time ago lol (about 42 years to be precise lol) - do bookmark us and come back and chat
Well done Viv - glad you managed to get the 2nd one done - and I do hope you manage to get some sleep!
I am looking for advice here - I know several of you are at the same stage of treatment as me - just had 3rd fec on 9th Jan. I have been absolutely awful after this one - the others were just the usual tiredness/insomia for the first few days - followed by the downer when coming off the steroids around day 4-5, but this time I just feel so shattered. I’m tired all the time, and soooo lethargic - and so very very depressed - usually the weepyness is drug induced and lasts about 4 hours - this time it is constant - I just can’t stop thinking ‘dark’ thoughts and getting myself in a state, keep bursting into tears and just generally feeling really down in the dumps.
I’ve rung my BN and spoken to her, and her colleague, tried to keep it together but lost the plot totally lol - I think she now thinks I’m some sort of manic depressive who needs locking up - though in her defence she was very good and talked about getting me more support if I carry on feeling like this.
It is just so unlike me - I’m normally such a positive, upbeat person - so I’m having a hard job identifying with this insanely obsessed morbid woman who appears to have taken over my body lol.(and I think my hubby is wondering who she is too haha)
Is it just me, or has No 3 hit anyone else this way?
sorry for ranting but as you’ll note from the time - i can’t sleep again !
margaret x
Hi lovely margaret,
I understand totally how you are feeling - as you know we are both at the same stage of treatment and I can also understand exactly how you are feeling. I am also struggling with the tiredness and depression, had an almightly fall-out with OH as I just shut him out, he has taken care of me so well and now I seem to be punishing him - think its all to do with my emotional state …blahhhhhhhhhhhhhhhhhhhhh
Sorry you can’t sleep my love, thats one thing I can do, and do well, its about the only thing I can do - it seems if I am sleeping then I am not upsetting anyone, or crying myself.
I do hope that today will be a little brighter for you - even just a tiny bit would help, maybe you need some me-time, take care my lovely,
Jackie xxxx
Hi all
Jackie - thank you so much for your comments - I’m glad it’s not just me (though obviously sorry that anyone else is going through it) - I do feel marginally better today - had one very small weep this morning but only because I was trying to explain to hubby exactly how I feel (which is difficult when I don’t even understand it myself lol).
He’s trying his hardest to cope with it all - but he’s not a talker unfortunately, or that good a listener if I’m being honest lol - he’s excellent on the practical front, will do anything from cooking, ironing, taking our youngest off for the day to give me peace etc etc - trying to explain that I need him there for me emotionally as well is so hard - cos he really doesn’t do 'emotional ’ lol.
His way of coping is to just ignore it to some extent - it’s like if we don’t talk about it, it isn’t there - which even he knows is a load of bo**ocks - especially now he’s on the receiving end of my foul moods !! He is trying though, bless him - and he did apologise this morning for not ‘being there’ enough for me - though I know he doesn’t know how to put it right lol - I think we’ll just be going round in a circle for a very long time - hey ho.
Think he’s looking forward to my radiotherapy sessions in February lol - I have to live away from home Mon - Fri so he’ll only have to put up with me ranting at weekends !!
Right I’m off for some lunch - decisions decision shall I have soup or a really unhealthy bacon roll!
take care
Margaret x
Hi All.
Jackie and Margaret - So sorry you’re having a bad time but so glad you posted today because you’ve reassured me that I’m not the only one! I had 3rd FEC on Jan 10th and normally I’d be feeling a lot better by now but I’m SO tired, SO weepy - everything you’ve described. It seems FEC no. 3 is a really tough one!
I’ve just had five days of G-CSF injections to boost neutrophils so I thought I might be reacting to this. I had a terrible pain in my lower back yesterday and felt completely debilitated. Barely capable of speech which is not like me at all. After reading your posts I think it’s probably just what happens after FEC 3. It’s so hard to know what’s a side effect of the chemo and what might be a side effect of something else.
The weepiness is really hard to cope with isn’t it? And absolutely anything can trigger it. I did the crossword today (an easy one - chemo brain can’t do cryptic) and one of the clues set me off - or rather the answer. If I tell you the answer was ‘transport cafe’ you’ll think I’m a head-case. It was something to do with driving and journeys and all the places I haven’t been able to go to over the last few months. My work normally involves me travelling around to lots of new places but now my world has sort of ‘shrunk’. The way I feel today, I wouldn’t even make it to the Post Office - 5 minutes away.
Janice - I had a shingles ‘scare’ after 2nd FEC. Small patch appeared on my bottom around day 8 when immune system was very low. I phoned the hospital and they told me to come in with my overnight bag which sent me into utter despair as it was the Saturday before Christmas! Fortunately they let me come home after blood tests etc because my temp. wasn’t raised and I didn’t feel ill. They gave me course of Aciclovir which soon took effect. Phew!
I’ve never even had a cold sore before so it was a bit of a shock but I too was told that childhood chicken pox will leave the ‘herpes zoster’ virus in your system and when your immune system is v. low it’s likely to rear its ugly head. Hope you got yours sorted and haven’t had any more problems.
Time for another lie down!
Look after yourselves, lovely ladies.
Caroline xx
Hi All
I had 3rd FEC on the 8th Jan and thought the tiredness was due to the shingles which fairly went mad after my last comments! I have a 3inch rash from navel to middle of my back and finish the anti virals tomorrow so hope there is some progress during the night! I tried to do an ironing today and came out in a cold sweat. However am really reassured by your comments will just have to rest!
take care
Janice
HI all
It does seem like No 3 is the worst - though I’ll hold that thought till No 4 lol !!.
Just wanted to let you all know that I seem to be coming out of the doldrums at last. Have had a really good afternoon - hubby took daughter out for a long bike ride - I’ve done 4 loads of washing AND I’ve ironed it all and have just finished putting it away. Also changed all the beds (with hubby’s help - I’m only 4 ft 10 and changing 3 double duvets is a bit of a task even when I’m well lol).
The downside is (I think - because I recognise the feeling) - that this heightened activity is leading to a night of insomna - I seem to swing from depths of despair to the heights of activity - there just doesn’t appear to a ‘normal’ middle ground any more?
I’m on penicillin at the moment for a throat infection - have also noticed tonight that I have an ugly bluey/red lump on the inside of my leg at the top, trousers are really rubbing it and making it worse, so might be another trip to my docs tomorrow - I would have thought the penicillin would have kept anything at bay but obviously not. I’ll be on first names with all the staff at my local clinic soon - have never spent so much time at the docs in my life!!
Hope the rest of you are managing to keep well and getting plenty of rest/sleep etc
take care
margaret x
Morning all you 3rd FEC ladies
It appears that we have formed our own very exclusive club, but I am not sure if I really want to be a mamber.
Your description, Caroline, of your world becoming much smaller is so apt - great wording.
Hope you are all feeling a little better today - I am slightly although din’t really sleep much last night, have come down with the “dreaded” cold and hope my bloods are OK on Wed.
Have been fairly busy this morning had a man round to clean my lounge carpet, spend most of my time in my lounge and was getting really sick and tired of the dirty carpet - very depressing. So now - all for £30 I have a sparkling clean cream lounge carpet - no more shoes and no more dinners on our laps, wonder how long that will last (Funny how this sort of little thing means so much when you are stuck indoors all day )
Have decided that if I have to stay home and rest I want it clean, clean, clean. !!! Having cleaners round on Wednesday all day to spring clean the whole house , think OCD is setting in.
I am getting concerned now about my fourth FEC as the third one was so awful - still I suppose we just have to do it.
Margaret - I have managed to sort things with my OH, had a long chat and he tried to explain to me how he felt - I think at the end of the day he just wants to take care of me and I am still trying to hold on to some form of independence, not a good mixture really but I think we are getting there. How did you get on at the doctors with the lump on your leg ???
By the way ladies - go out and buy this months edition of Cosmopolitan, its the one with J-Lo on the front, one of the ladies from these forums has an article in there written by her husband - its lovely, very inspiring
Have a good day- catch you all later
Jackiexxxxxxxxxxxxxxxxxx
Hi everyone,
Had my 3rd FEC on Jan 9 and haven’t been able to do much at all. It’s been really hard. I didn’t even attempt to do anything on Saturday as I wanted to go out for lunch on Sunday. The lunch was great and eating seems to give me a big boost. Last night I was awake for hours.
A strange thing - today is day 13 and my face came up like sunburn this morning. Just my face. Exactly the same thing happened on day 13 the last time and they told me to take Piriton. I took the Piriton this morning and it has settled down again. I used my usual moisturier for the first time in weeks yesterday ( I have just been using e45 cream) so it must be that I suppose. It can’t be wine as I drink wine at other times and it can’t be my foundation as I wore that on saturday as well.
It’s 12.30 and I haven’t even attempted to get out of bed yet. I think the Piriton made me feel sleepy though.
Also, does anyone have a sore arm - the one where you have your chemo. My forearm feels bruised and I wonder if it’s my veins. It’s not where they put the needle in - it’s further up? I can’t carry heavy bags with it.
Here’s to better days.
Lorna X
Hi there
Yes Lorna my arm has been agony since 2nd FEC and even although they used another vein for the 3rd it is still sore and the vein has gone brown!! Am now dreading what happens with 1st taxatere on 29th!!!
the joys eh!
Janice
Hi all
Well - the world is a different place this morning - at least mine is! I feel much much better thank heavens, because I don’t think I could feel any worse than I have for the last week.
Jackie - can completely relate to the cleaning thing. I think it is the fact that you are in the house so much, you notice so much more! Glad you sorted things out with OH - I can report that (having told mine on Saturday that he could just pack up and get out !!!) we are sorted now, after a long chat, and thankfully he knew how depressed I was when I told him to leave lol - but god did I feel like a complete bitch afterwards - he has done so much to help and support me - he certainly didn’t deserve that!
Seeing doc tomorrow re lump - only available appt today was with new registrar, and he made a huge cock-up with the first Fec infection and blood tests and as a result I don’t trust him or like him much - so didn’t want to see him lol
Lorna - I have the sore arm too - no where near the veins they have used. It started after the first fec, and a bruise came up at the top of my arm, kind of mid-way between elbow and shoulder, on the outside - this was followed by a tiny lump in same area. the lump has never reappeard, but the bruise is always there and it aches occasionally.
Right, while I feel so well I’m off to gut the kitchen cupboards - or maybe I’ll just watch some more daytime tv !
take care
Margaret x
Morning ladies
Oh Margaret I am so glad that you are feeling a bit brighter and I am sure gutting the kitchen cupboards will make you feel better. The only problem I have today is the fact that the cleaners are coming in tomorrow and i feel like I have to tidy up first - how stupid is that !!! hope you get on alright at the doctrors, let me know how you get on. Your OH and mine should get together and compare the bitches they are having to live with - this disease cetainly takes its toll on every part of your life. Even managed a fall-out with my son (age 15) last night as he was complaining because it looks like we won’t get the holiday we had planned this year - LA, San Fransico and San Diego, I have told him that we would probably have to postpone it, his reply was “oh well so we don’t get a holiday then, great !!!” Oh if only people understood , so we don;t get a holiday, I have lost a boob, my hair, my driving licence, my independence, my dignity, and my life (at the moment) , but he can complain and go on about the fact that he might get a holiday - I was furious…
Lorna - I also have the arm problem and they used a different vein for third FEC but it hasn’t made any difference, the strange thing is straight after the treatment the vein felt recovered and my arm wasn’t sore, then as time has gone on its very painful again, feels like it is totally battered and bruised. I spoke to my breast nurse about it and its the chemo drugs hardening the vein, oh what joy !!!
Well ladies think I better start the tidying although I don’t really feel like it at the moment
Catch you all later Jackiexxxxxxxxxxxxxxxxx
Hi all
Well what a good day I’ve had ! Started gutting the kitchen cupboards - then decided there was a funny smell coming from my sink - so took the waste pipes to pieces and gave them all a good clean - then realised I had all these pieces of pipe with no idea how they all fitted back together lol. managed it eventually and it hasn’t leaked yet!
Then having such a lovely pristine clean kitchen - I decided to do some baking - made a lovely big three tier victoria sponge with cream and jam - and tasted a bit and it actually tastes like cake - which is unusual at the moment aa nothing else tastes right! Also made daughter some chocolate buns - that went down well when she came in from school.
Am going visiting my aunt tomorrow - she’s quite elderely (but ‘with it’ lol) and a bit down in the dumps at the moment (and we know how THAT feels don’t we haha) - so I’m gong to bake another cake to take and cheer her up hopefully.
Jackie - think you’re right - there will soon be an ‘OH Club’ for downtrodden and abandoned OH’s’ - they’ll meet in a pub in a central location and put the world to rights in several hours lol - what a picture that conjures up !
Sorry about your son - I’ve already had that from my nine year old daughter when I tried to explain that I have so much treatment coming up that I can’t book a holiday just yet till I know dates etc for treatments - she could whinge for Scotland believe me!
I have today signed up (and paid my dues so I can’t back out lol) - to do the BCC Ben Nevis Climb in October - told my daughter and naturally got ‘SO…YOU can arrange things for yourself but we can’t have a holiday???’ Fortunately, once I had explained that apart from Herceptin all my treatment will be finished by then she was a little appeased (but not much lol)
Hope the cleaning went well??
Went to docs - gave me cream to slather on the lump which she thinks is a fungal infection, probably related to the extreme dryness I am experiencing ‘down below’ (which also has to be slathered in the cream - oh the joys…!
take care all
Margaret x
Hi Ladies
And good morning to you all, well done Margaret sounds like you are definately on your way out of that deep, dark pit of depression that you were in - you have done well fancy cake baking and cleaning out cupboards - I am so proud of you , well done my darling.
Can’t belive that our kids are moaning about their “holidays” - oh if only that all we had to moan about.
Well the cleaners have arrived, very exciting ( God I am sooooooooooo sad) your right Margaret I think its just spending so much time here at home that has made me notice all the cobwebs and dirty paintwork but they have assured me that they will sort it all - yipee
Hows the lump ? Has the cream made any difference ? Hope you are still feeling bright and cheery, thr weather down here is awful, so grey.
Off to get my bloods done later, then going shopping with my sister and out for lunch. Spoiling ourselves for a change… tee hee I’m getting really good at that.
What are you all up to today ?
Lorna - hows the arm today ? Forgot to tell you before my bc nurse suggested Ibruprofen gel or cream for the arm - it might help a little. I haven’t experienced the face burn thingy, that doesn’t sound nice at all, why would that happen, is it an allergic reation to your chemo ?
Have a good day ladies, will mail later to see how you’re all doing
Jackiexxxxxxxxxxxxxxxxx
Morning all
Still feeling wonderful - long may it continue!!
Hope the cleaners do a wonderful job for you Jackie - you just go out and have a good time - enjoy your lunch while you think what a wonderfully sparkling home you’ll be going back to (then send them round here lol - they can do the rest of my house haha)
I’m off to visit my husbands aunty this moring - she’s a lovely lady of 82 who has been so good to us - but she is really low at the moment so hoping to go cheer her up some!
Re the Ben Nevis climb I’ve signed up for - I have just checked my sponsorship page and I’ve already raised 25% of the total - I’m well impressed!!
Anyway - better go get dressed I suppose!
take care all
Margaret
Hi everyone,
Im day 14 after fec 75 number 1, my hair is departing this world, ive a cough and cold temp 37.7, fec 2 due next wed im dreading it, doing 3-4 hrs work,
just saying how it is, i had a wee cry yesterday as my hair was falling out, OH lovely and reassuring. Its just that now I look like a cancer patient… do you know what i mean? ive got loads of beanies and hats, and a wig fitting appointment today, so im prepared.
time to get ready , thanks honeys,
Julie xx
Hi all
its great to hear about you Margaret & Jackie
I am day 8 of first FEC and have had constipation then the burps both have been sorted by scripts! the pharmacy & surgery know me now! I burst into tears at pharmacy on monday lol
have got some wigs ready to order and am prepared like you Julie with scarves etc - its the waiting and wondering whether i bother with cold cap next time if needed…
my tummy area looks so huge & bloated! and my appetite has only just come back last night - now am eating chocolate! no alcohol as on these ‘relax’ pills today - but tomorrow fancy a very cold white wine!
my arm feels bruised too Lorna & Janice - dreading the next one!
great to hear from you all and be part of other threads too
Jan