Blimey took me ages to find this thread and I can't remember how I did it so I fcould be lost in cyber space for some time!! Thank god we speak on FB lol how did you get those avatars Ostrich?
Just a quickie: I have rads planning this morning so will hopefully know when I start and finish later today, but am guessing I'll be good to go towards the end of March. Have camera and attitude, will travel anywhere :-)
Will post about my weekend later, in mad dash at the mo to get the boys up.
Hope you're all coping and well, lots of love
Glad you are feeling better Narnia,
Ostrich the Neulasta aches were bad for me this time - neck, shoulders, tops of arms mainly. ouch ouch.
I was SO sick a couple of hours after the chemo but other than that this FEC has been the best, along with FEC 3, for sickness, so Narnia if you do get very sick ask for Aloxi (Palonosetron) as it has worked well.
I live about 10 miles outside Manchesterand am K to met up anywhere, best week for me is March 23rd-30th but any weekend is OK xxxx
Has anyone any idea about when will suit everyone for our meet up? I am done 24th Feb with Rads.. so probably the 1st one to finish...
glad your feeling better ) xx
Pheebs - not sure who is furthest north I'm west and I think so is Ostrich not sure about Bella and Irina. I would prefer a hotel too I'm sure we could get a nice deal seeing as there will be a few of us. I don't mind doing a bit of ringing round or looking on t'internet if we have an idea of the location.
had a much better night last night, woke up a few times, but managed to fall asleep again quite easily and the joint pains aren't nearly so bad, thank goodness. I have been drinking bitter lemon and had some pineapple, which seem to have cut through the yukky coated throat, which is a help.I think the main thing though, was to take paracetamol regularly, so the pains didn't get too much chance to build up, and i also went for a short walk, so here's to the rest of this month being back to a more even keel!
PS: Forgot to say, I am not too keen on Centre Parcs...like the idea of a nice (but reasonably priced) hotel in a nice little town or village.
Where would be a central point for everyone I wonder...who is furthest north (would that be Cat) and Tanya must be furthest south (unless we include Soo)!!!!
Liz, Lorna and I are all fairly close together being Essex/Kent borders
Ostrich.....you visited all my old haunts! Used to live close to Whitechapel...worked just round back in Aldgate. Spitalfields was our Sunday morning breakfast place and Brick Lane has to be the best place for a ruby this side of Bradford. Greenwich is where the in-laws live so we are always in that neck of the wood - 4 legs often stretches her legs in the park there.
When I hear people talking about London as you do it makes me realise what we have on our doorstep and take for granted....just a shame about all the filth caused by people who don't give a damn about our city
Your SE's sound horrid by the way.....probably a build-up of all the kimo, do you think?
Liz: Aaliyah will come along, and depending on where we go 4-Legs may show her face too. Skull pain sounds horriffic...ouch!
Hope everyone enjoyed their respective weekends. We are having a lazy dog...OH out with the dog, Eldest gone to the cafe for breakfast cos he has just walked in since Friday (yes, Friday - little sod) and missed ours and I am going to tackle the ironing (I love ironing....honest).
Busy week next week...Lakeside tomorrow to get eldest his b'day pressie (new let of luggage) which I hope to get in the sale. Rads meeting Wednesday and pre-kimo meeting, and kimo #6 Thursday.......resulting in no sleep till next week!!!
Gosh, what a lot of posts. I doubt I can remember them all so soz if I forget someone.
Soo, hope you are less red and sore now, sounds like you are really suffering, x
Cat, hope you had a great meal and weekend, x
Hope everyone else suffering SE's or alcohol deprivation in prep for next kimo is doing ok, x
Tanya, sooo jealous of you bathing! Me too soon hopefully, x
Returned from London yesterday tea time but was bushed so didn't get on. Had a great time with our friends but was perhaps a little too early after kimo to be going away. Supped ginger beer all the way up in the car and sweated somewhat as determined to wear wiggy all weekend and not go bald. Arrived about 12 on Friday and then decision taken by the other 3 that we would check in to the hotel and not return until bed! For some reason this FEC I have hurt in places I didn't know it was possible too. Whilst I didn't feel any more unwell than normal all my skin, muscle and bones hurt so much that I couldn't be touched without it causing me agony! Felt fine other than normal kimo effects except when I tried to move or someone touched me. My breast bone, back of my neck and top of spine, stomach were worst and what with the feeling sick, kimo head and sludge mouth I had a rather painted on smile more than genuine when they decided we would stay out!
We went to the City for hubby's BF to buy a suit and then wandered around Spittlfields Market before heading off to St Katherine's dock and having a drink and food. We then went on a Jack the Ripper walking tour (hubby's BF's wife's birthday treat (!?) around Whitechapel before heading to Brick Lane for a curry. (Yummy cos I could taste it!!) We got back to the hotel at about midnight and I have to say I was shattered. Got up yesterday and went to Greenwich and stood on the timeline before wandering around the markets there where hubby brought me a gorgeous ring, sold silver and made from an old teaspoon. Sounds odd but it is gorgeous! Still ached in countless places but no temp so goodness knows what it is. GCSF perhaps though that normally only affects my bones in my legs.
Got home at teatime yesterday and I immediately changed into my slobbiest pjs and curled up in front of the fire with a glass of vino (1st I could manage that tasted like vino) and a slice of pizza.
Aches and pains have gone pretty much today so has sludge mouth so just going to slob in pjs and catch up on housework and catch up with 16 year old son home for weekend.
Hope you all are well, xxx
PS I am off to Centre Parcs in April at Longleat - its v expensive though nice. Me thinks a hotel weekend break would be better or perhaps a cottage next door to a nice pub with a roaring log fire?
Great news re hair Lorna ( isn't bubbly great!) both you and Cat hitting the bubbly bottle tonight you lucky things.
Cat sounds like you're having a fab time, both in and out of the jaccuzi ;o)xxx look forward to seeing photos ( not of hte jacuzzi obviously lol )
Tanya, I'm around from the 14th - half-term will have started, but so will my rads, so I won't be going anywhere. Just say which day would suit you. OH could be going away on a course for the Sat and Sun, so I'll be free.
Pheebster - so glad your young friend has nowt to worry about, great relief. Might you bring your sprog as well next month? If so, I could bring mine and they might enjoy a teenage moan together about their mums' problems.
Never been to Center Parcs, but up for anything - could be a good compromise, and not to pricey if not school hols.
Cat - I love Brighton, so whacky and cosmopolitan and by the seaside. Enjoy.
As for me, I'm just getting through the days - pains in skull and hips, monitoring the progress of the sludge gob, and so GLAD that this is the sixth and last (hope) time, not the first.
All the best to the rest of you with your SEs or forthcoming parties.
A quickie...having a better time than anticipated in Brighton, although I'm absolutely cream crackered. A short walk on the promenade and pier left me so tired, but managed to wander around for a couple of hours at a snail's pace (bl00dy Brian, Bella, he keeps appearing everywhere). I worked out yesterday that my walking rate is 25% slower than pre-kimo so need to sort that out ASAP. Anyway, PILs were much more sensitive than I expected; I think James took on board my concerns and rang them to tell them what they could and couldn't say without getting a thick ear.
Brighton, as ever, is an eclectic mix, but freakily full of starlings flying around like mental everywhere. My day was completely made by finding a starfish on the beach; felt massively bad for the poor starfish but it was so incredibly beautiful. I shall take my macro lens to the beach in the morning to see if I can get a good shot for a project I have in mind.
Just scoffed half a bottle of Veuve Cliquot so feeling mellow and have soaked in a jacuzzi bath for nearly an hour. I feel quite positive about it because I asked James to share the bath with me. No biggie really but I felt comfortable enough with him to do it minus the boobie so although I wander around with nothing on, I haven't been comfortable until now to sit in close proximity with my post-surgery body. Maybe being slightly tipsy and very tired helped.
Hugely looking forward to supper at Terre a Terra; plenty of vegan options in a veggie restaurant. I think I've already picked what I'm having, already famished and ready for it! I think it's the one time I'll be grateful for steroids for making me pig out :-)
Hope you're all having SE-free lovely weekends, my favourite girlies, much love.
(Yes, what a loser to be online on a weekend away, but I wanted to be able to edit my photos as I shoot.)
Soo I am sorry you are suffering so much. I was given some hemp hand creme yesterday from the BodyShop and it is fabulous. My niece who works there said they do it in face creme as well, so she is going to get me some. My red patch has gone now, but around day 17 on TAX my face gets really blotchy and loads of little spot like things - horrid - then it disappears again. Strange.
Cat: I hope the weekend is bearable. Brighton is great any time of year so maybe that will make up for the insensitive in-laws. I am sure Nathaniel will have a great weekend too.... Hope it makes up for the rubbish birthday!
Tanya: I can't wait to get on a proper diet. I have stopped the binging now but I can't give up the wine...not yet! Anyway, this is my last weekend of alcohol cos it's kimo on Thursday, so no more wine, just gallons of water, so I can get propery hydrated again and ready for the dreaded cannula...and then of course, it's back to the dexa and mega-apetite syndrome. But hey....hopfully for the last time!!!
Lorna, Irina, Cazz, Avonlea, Liz, Narnia and anyone else I may have missed....hope you have a painfree weekend.
Love to everyone
Soo heart goes out to you ((((((((((()))))))))))))
Hope everyone else has a good weekend and se's not too horrible.
Cat - hope in-laws behave, and you have a nice weekend - you deserve one after rotten week youve had.
Pheebs have heard of Tetbury, think its about 10 miles or so from me but then I'm crap at directions and maps and things. I'm in Swindon and Tetbuy is Goucestershre. I'm sure its a lovely place I know Gloucestershire is very pretty and countryfied.
Love to all
sitting here feeling very feeble.............................bones hurt like the devil, and wasn't sure if i could take paracetamol or ibuprofen to help, so tossed and turned all night with pain. checked with hospital this morning and they say it's ok, so hopefully i might get some sleep tonight??Face isn't so red now either, which is a blessing!
Soo - that sounds really rough all the side effects of the Xoleda as well as Tax hand and foot soreness. I do feel for you and hope Dr Musty can set your mind at rest with a finishing date. It must be hard no having a date as a 'goal' in a way.
My next goal is picc line out Fri 30th and off to take kids swimming the next day - deep bath first to wallow in that water though I think with the weight gain I need to buy a bigger bath first to get he full effects of a proper soak - LOL
Hope we do get our meet Pheebster - looking forward to meeting you and 4 legged Pheebster.
How are you doing narnia? Hope the se's are brig kind to you and everyone else.
I really hope the week-end turns out better than you anticipate Cat. You can do without the stress.
Hope everyone who had kimo this week is doing OK.
My feet and thumbs are getting worse and its really getting me down. The nosebleeds haven,t stopped and I,ve now got a mouthful of ulcers so I,m feeling down in the dumps.
Pheebs, you were right when you suggested whether the redness on my face was due to heat. Apparently Xeloda makes your skin hypersensitive to the sun so what is on my face is like sunburn. Yesterday on the way back from Kemer we stopped off for a bite to eat. The restaurant had an old fashioned (read; old oil drum!) wood burning stove, I was sitting near it and within 10 mins my left hand had become really red and sore and today along the side of the hand and the side of the thumb it looks like an oven burn. I,ve now started using factor 50 sunscreen.
I hope Dr Musty can give me an idea of when treatment will be finished.
Quickie good morning and then I'm outtie. Got to go to Brighton for the night, via James' parents to drop of the rugrat. Not looking forward to it, I dread what the parents-in-law will be like with my wig and bald head. They keep saying how much they're looking forward to seeing me bald - because, yes, I am a freak in a side show, and I love people gawping at me - NOT! Here's hoping they think about it and are more senstitive than I anticipate. Then it's a night away and dinner at a nice restaurant, although I think I'm too tired and achey to be bothered. No one really listened when I said later in the year would be better because I might be awake to enjoy it.
Hope you all have fabulous weekends, as much as possible for everyone with SEs from the last chemo.
I was out to lunch today too... Stranda...Nice to be starting to feel a little stronger and hair is growing!!!! But am also having those hot flushes.
Am happy to go along with what the majority choose re get together... I have been to Centerparcs.... Sherwood forest and Cumbria.. and also a new one (not centerparc... but same concept) called Bluestone in Wales.. I am going back(Bluestone) in April for a girlie weekend with Sis and friends! But am happy with what ever.... Q Hotels are nice.
Have a good weekend and hope those just partied are not suffering too much.. and well done to those of you who have finished xxx Good luck those to still have one more xxxx
Tanya.....would love to see you when you come up to Epping....just hope I wont be away when you are here. No sure what nights we will be in Cotswolds yet, as it's my friends weekend cottage so I need to see when it will be convenient for her.
Cazz......I think the cottage is close to Tetbury...Pheebster is gonna love it.
I've never been to a Centre Parcs....does that entail being sociable????? (lol)
Oh by the way....remember I was taking my friends 19 yr old daughter to the brest clinic today. Well, she is fine....nothing sinister and nothing that needs removing this time, so big sigh of relief. She saw my surgeon, who is fabulous, and I also ended up getting a bit of a consultation with him, which was handy! He was very reassuring, put my mind at rest over a few nagging worries and even gave me a big hug and kiss before I left....and let me tell you....he is one handsome man!!!!!
We had a nice late lunch in Cafe Uno this avro (or whatever it is called now) and a few glasses of wine. so all in all we've had a good day.
Have a nice weekend ladies...hope the SE's are kind to you all
I'm going to center parcs in Holland in March, for a long weekend to seee my favourite band.Went there two years ago, and thought it was wonderful!
Centre Pards are nice, I've been to the Longleat one and one in Norwich I think, ( it was a long time ago ) they are quite expensive tho. Another idea could be to stay in a fairly inxpensive ( but nice ) hotel, maybe a De vere or similar, they do deals sometimes where if you book so many rooms ( twins or singles ) they do group discount. They normally have spas too.
Centre Parcs is a possible! I went there on vacation last Summer and thought it was a bit overpriced and full of temptation for toddlers, but I reckon I'd be able to drag myself past the sweetie shops with you guys. Good idea. My neighbour is an afficionado if no one here is, so I could ask her which one she goes to with her girlfriends.
I'm also on the night sweats/too hot/too cold mularkey. What apain. The only thing I've discovered which helps sleep is lavendar bubble bath, which I know not's too good for thise of you craving a soak. Also lavendar essential oil on a hankie or something next to your bed is pretty good. I can get a few hours in this way.
Re. getting away from it all, what about Center Parks? Shared accom, restaurants, countryside and a spa!
Hi Cazz - sorry - kimo brain - High Beach is a village in Epping Forest where MIL lives - going up for a few days at half term and had planned meet with Pheebster and Liz there if possible for a walk/coffee and chat. Apologies re mistake.
Hope your side effects pass soon Narnia.
Hi Pheebster, not I'm on TAC,, but yes, 3 days of steroids, so hopefully the face will return to normal soon??I was sweating like a greased pig last night too............flinging off the bedclothes one moment, then shivering with cold the next...............oh bliss, only 5 more to go!!
Oh just had a thought, Soo you're still having treatment, didn't mean to be insensitive towards you.
Can empathise re lack of sllep although mine is due to night sweats and the fact that sleep has been interupted for so long now its a habit to wake up every 90minutes or so. My only salvation so far has been the fact I can nap kuring the day but its not the same Luckily haven't had constipation but have used lactlose in the past ( for the kids too ) and it does work wonders.
Tanya whats High Beach? Pheebs understand your going to Cotswolds, I'm not far from there, where will you be going?
Hope se's are being kind to all those who've had no 6 ( or 5 ) just imagine no more kimo se's after this round. bliss
Bowels! Pain in the ass aren't they!!!!! I had this problem and I have found the cause to be the anti-sickness (I know because last kimo I didn't take any and I was fine). In all honesty....I found nothing works...just wait for the drugs to leave your system. Granisteron was the worst for me...dom periodone is much kinder (though not as strong).
I was given movicol and I also bought lactlose, on top of taking these I took senna too - just ended up with belly ache!
It is the worst feeling, I can sympathise. If it coninues ask you dr for an enema...that will definitely work buut may cramp your belly (did me).
The steroids really upset your sleep pattern too.....but in my experience after a couple of days off them sleep becomes easier. Are you on FEC Narnia? If so resume you have 3 days of steroids....
Morning ladies. How rubbish to get all these side effects on no 6 - should be easier knowing it is the last cycle but it is all as foul as ever. I am not getting Herceptin but am told it is nothing like FEC & TAX thank goodness. I will still be checking into the thread but great so many of us are on faceboom to keep up with each other are you on facebook avonlea? An MSN party sounds great - will need to register as not on yet.
Pheebs we will be in High Beach 14-17 feb, come home early on 18th as rads start 19th. We might not get a meet this time if you are off for a break too. Might still get to see Cazz. Will be in touch.
Thinking of all you ladies partying next week and afterwards.
Glad Tortie is doing ok Soo
Hi Bella - you are not alone- i was sick right after the drugs were inside me- thought i 'd have an easy no6 but it hit me hard really.
Cat- i could not sleep well either- was up last night from 2 to 6am - must be drugs -what CD do you recommend? it would be nice to know.
Constipated a bit too - bloody kimo really makes me have no diginity at all!!
I have a very disturbed sleep pattern like you, Narnia, and am shattered all the time. I spoke to my GP about it and she was reluctant to prescribe anything and suggested OTC remedies instead, to go along with meditation and relaxation exercises. Speak with your own doc and see what advice you're given, and go with what works best for you. I can suggest a couple of guided meditation CDs if that takes your fancy as a way to help you relax and get back to sleep. As far as getting yoru bowels to shift, not had that problem myself but would recommend syrup of figs, a nice and natural fruit laxative (Califig is the one I have in my medicine cabinet). Hope this helps, PM me if you want the CD suggestions.
I'm on Metoclopramide and i had to take Ondansetron on the chemo day............plus the steroids for 3 days.Woke up at 2am this morning and just couldn't get back to sleep, so totally k'd right now, and still the colour of an over-ripe tomato!! Is it ok do you think, to get some sleeping pills from GP if my sleep pattern continues to be disturbed,,,,,,,,,,,,,and what sort of stuff can I use to get the bowels shifted.........senna doesn't do a thing for me, so I usually use duclolax, but is it ok??
my face is like a beetroot today............is that the steroids do you think???Also feeling pretty nauseous, in spite of drugs, so lord knows what it will feel like tomorrow without anything to take!
I just want to say a big yeeehaaaaa to all of you that have now finished the kimo. Only a few of you left to go. My next one has been delayed until Feb 2 because of half term here.
At this rate I,ll be the last here, but hey ho. I too will still be having Herceptin until at least June time.
I,ve had a good couple of days but tonight it is taking its toll, I,m bushed. But tomorrow I have to go to Kemer ( a 2 hr ride each way) to renew my residency visa.
I,ve planned to sleep all day Saturday LOL.
My feet and fingers are really bad now. The skin around the thumbnails is cracked and bleeding, and my heels are also in a bad way. I keep lathering on the cream, so God knows what they would be like without it. The Farmer Giles look has settled down a bit .
Those of you that having following Facebook - Tortie is much better. She,s snuggled up next to me. Still a bit spacey but will be fine.
Sorry if I,m not 100% upbeat, honestly its because I,m tired.
I am so happy for everyone who has finished the kimo. Onwards and upwards.
HI all, I did post earlier but lost the lot.
Love to everyone suffering SEs at the mo. I'm absolutely knackered after FEC6 so I haven't been in the party mood yest as I'd hoped, but with any luck it'll come soon.
I aslo felt very sick in the party room on Tuesday, so much so that when I escaped and was waiting outside for hubby to bring the car round, I was looking for places to be sick as I knwo I couldn't bear the smell of going back in.Luckily I held on and was Ok once I got home. I'm still feeling as sick this cycle as ther first one, but am taking the drugs religeously and hope it passes soon. Two things help, sleep and ginger cordial and I'm getting plenty of both, so hopefully after my bulldozer days today and tomorrrow I'll perk up at the weekend. Then I can truely look forward to NEVER feeling like this again!
I said in my post that I managed to delete that I take my hat/wig/beanie off to those of you who have Herceptin to go. I really couldn't do it and am happy with my rads to follow plus tamoxifen. If ever anyone ever comes near me again armed with a cannula I'm gonna run!!
Love to all, and all the best who are still on the final lap. The virtual party sounds fab, I can't wait to feel well enough to raise a glass of chilled white to you all!!!
Evening everyone. Well done Irina and Avonlea.... Hats off to you lot on 6 x FEC I hated it with a passion, even though I didn't suffer too bad til FEC #3. TAX has been so much kinder to me..(famous last words).
Sorry you got sludge gob Kate....I only started getting it with TAX...dairy is the pits, isn't it? I stick with black tea and manuka honey til the taste buds return.
Cazz...sorry I forgot you got moved from your original kimo spot and now follow on from me and Cat!
Liz: Yes, you have to register with MSN...ask the kids!!! It's good fun though - especially when you get a lot of people on there (sorry should I say 'hammered' people)!!!
I'm cooking chicken breasts for dinner and wings for the boys....but just wanted to check up with you girlies while I drink my glass of Malbec....mmmm
Sleep well lovelies and to all thoseon dexa...get the bloody ironing done!!!!!!!!!!!!!!!!
Well done Irina, you got there. Hope the SEs aren't too bad. I'm feeling OK at the moment, but know bone pains will kick in from Sat, and then sludge gob. Like you, Tanya, just wish I could be anaesthetised through the next week. Like the sound of a virtual party, Pheebster. Do I have to set myself up with an MSN account beforehand? Kids have them but not me. Also like the sound of a few days away, but I will be into daily rads by half-term, so no getting away from London. Ostrich, know what you mean about the tablets. I had Dexamethasone (4 of them) stuck to the roof of my mouth earlier today, but they were my last ones and I felt I had to persevere. Could taste them for hours.
All the best to those still to party - and may the SEs be kind to the rest of us
Well done Irina and Avonlea for getting to the end, I know FEC is gross for making you feel or be sick, but hoorah, you've done it!!! Is it now just me and Pheebs to knock #6 on the head next week? With Ostrich to do #6 in three weeks?
Sorry missed you off my post earlier, didnot realise it was your last one on Tuesday. I know you don't feel like celbrating yet but well done.
And Irina good on you girl hooray no more FEC for you!!! Hope se's are kind this time hope to see you posting soon.
Ostrich, yuk I hate taking tablets for the very reason you outline above, I can't think of anything worse than a tablet dissolving in my mouth URGH!!! Hope you have a really good time in London can't wait to hear all about it.
Hi to all
Well done on getting through your 6th FEC Irina and Avonlea! As soon as the SE's wear off - celebrate!
I wish they would make all bleeding tablets with plastic coating - took my lunchtime steriods, anti sickness and anti coldsore - none of which have plastic coating on like my anti-heartburn, anti sore tongue (don't do an anti sludge!) - and vomited up the anti coldsore cos it began dissolving in my mouth and no amount of water could unstick it from the roof of my mouth where it continued to dissolve and taste ick making me throw up that and all the other tablets I had just taken :-(
Have washed my wig for tomorrow and been to the shops for milk and other stuff to keep kids going over weekend, have just packing and dinner left to do before I fall into a hot shallow bath and bed!
Tried desparately to defeat the baddy on Prince Caspian today to no avail - will have to wait for 16 year old son to come home and help me kill him on Sunday! LOL!
Take care all, xxxx
I have had the last feccing FEC, with a new drug Palonosetron. Too many posts to catch up on but when I am over the post-FEC vileness I will be back - thank goodness it's the last one, good luck to anyone else having chemo this week xxxx