I know what you mean about being ignored. I had people walk past me today whom I know well who didn’t acknowledge me I guess they didn’t recognise me? as I had a good friend do the same earlier in the week although she was very apologetic for not knowing me. I guess I must look fairly grotty but have got use to it myself .
I have never in my life wanted time to go past so quickly it feels like a prison sentence.
Bevy
hiya all
Hope you all having a niceish weekend, thanks for all your commnets and had a giggle at some of the stories.
I dunno whats wrong with me, I cant stop crying but dont wont anyone to know cos its all you need to be positive got so much to look forward to etc. and Im just struggling to see any future and thinking its happened to me cos Im the one thats alone and doesnt need a future, sorry for self or what, when theres so many people out there worse off than me.
Well at this rate gonna have rubbed all my lashes out as cried for england today, on good side Ive done so much housework!!! Well I live in the back of beyond in whitehaven in cumbria, but today status quo are playing in our rugby ground and can just and so hear in the garden!! my two friends who are sisters were going to have a party but they are too busy as off on a mini hols on monday like everyone else I know at mo!!
My friends baby is a lovely little girl called Briony, her son is 14 so biiiiigggg gap and Im back to being an aunty Lisa Lily, got me down to a tee, called Aunty by sooo many kids, godmother to 6 so far. Off now for a full bottle of wine, sod it! On good side that injection for bloods day after chemo was fab, my white bloods are usually about 1.7 on day ten and about 8 on chemo day, this time on day 10 they were 28.2!!! got a tad of something called hand and foot syndrome I think, so to do the dot to dot with my face spots have them on hands, swelled at tad, dry and red and a sore patch on feet which probably feels like the sandpaper in mouth, however still think Im getting of lucky compared to most people!! but, my aunt has the foot problem really bad and apparently the stuff they use isnt that good but guess what works really well “cows udder cream”, yes Im going to be applying it to the hands, its smells really minty but with a slight sulpher after smell - what we will do eh!!
Decided not to take my homeopathy remidies, they prefer me not to as they could react. told me radium starts a few weeks after chemo, then once I see the woman about my overies removal it will happen within about 2 weeks, so trying not to focus on it all - already getting scared about what happens when not having chemo anymore!
Anyhow, hope you are all well, apart from bugs (including beetles), germs and blasted chemo! Heres to a little bit of sun tomorrow.
Oh lily, can you believe it, munched on a dry meringue, apparently antibiotics prefer you to keep away from things with milk in, at a push can eat at certain times but limit it …aaaarrrgghhh…
Love to you all and thanks again for everything
xxxx
Hi everyone,
Lisa I have been crying a lot too.
Mine is because my side effects are so bad this time and I am just about to start what should be my best week, and I am barely off the sofa. The trouble is although my bone marrow seems to be able to handle the epi so far, my mouth and GI tubes are crippled. There is no way I will even be reasonable before the next dose but they ignore side effects if your blood is high enough. I have tried to joke about it but I am now at the point that I am trying to eat almost nothing so that I don’t have to use either end. This is not a problem as have plenty of spare blubber but making me more emotional. Not expecting bloods to be good as not eating my high protein diet and got infections I think. Why aren’t you eating? You need to be careful with the hand foot thing as if gets really bad you can’t stand on your feet. I read you must keep your feet cool at all times, no socks, etc and even your bath/shower water should not be very warm.The trick it to keep hands and feet really cool at alll times, a joke in this weather I am sure! Good luck with that and the cows udder stuff sounds horrible!
How horrible to be ignored. I have not noticed it but it is probably me avoiding them so I don’t get asked questions. I really can’t be bothered to go through the whole story and then being asked to call round any time. How nice, now you have Bc you can drive yourself to people’s houses who never invited you before. Sounds like a great conversation! Angie have a lovely visit with Mum and good luck with the next, storming through them now. Did you manage to shift your trouble? Bevy what was that all about? Nicky I am thinking of you having a lovely time away and bringing us back soothing stories of the sea.
Me, I feel a bit washed up at the moment. Is it just me. I think it has suddenly taken a toll on my face. After 1 and 2 and even 3 people said you look great but now I think I look old, bald, cold,life on hold, not enough gold, full of mould, told and too out of date to be sold!
Hugs to everyone. Big onc meeting on Thursday, hoping no surprises.
Please someone have a really great time to cheer us up
Lily x
Lily you poor thing, feel soooo guilty for twining now when you seem in lots of pain and side effects. Think maybe its getting to us now as we did seem to be doing so well - but at least we are doing it. Really hope thursday goes okay, is it for the results of the scan. twin thing must be hitting in again cos everyone kept saying I looked really well but god the spots and dryness, and stupid rat, someone took a pic the other day and I was mortified when seen it, it ain me anymore but hopefully after this blasted treatment we might be due a bit of luck.
here’s to tomorrow bringing a brighter day. I am eating but milk products a no go with antibiotics but other than that been eating total crap and drinking far to much to drown my sorrows and to wet my chapped lips (any excuse eh). Hope you feel a bit better and going to be more positive for you as it sounds like you are suffering much more than me, Im just feeling sorry for self and brace face around others - think Im just a bit peeved, mate asked me after a few drinks if I wanted to go away with them tomorrow, there’s about 15 of them, mainly family which Ive always been close too (in fact tooo close to their brother!!), but never mentioned it since and I could have really done with a little break and feel unwanted but hey ho such is, just could do with a big cuddle of someone and having someone to look after me, but then again sure they come with their own problems.
Sorry but off to find something else to eat. Angie, hope you got sorted and hope everyone else as good as can be.
Any good jokes to give us a giggle
xxxx
hi everyone
so many messages cant take them all in… everyone as so much going on at the moment, so sorry for those that are suffering. those of us who are lucky at the moment will have to share some of our strength. ( we need to lean on each other, at times like this.)
i have just had fec no 5 which i was dreading, after a bad reaction to no 4. ( but ive been pleasently suprised, so it just shows none of us know what the future holds. i really felt at times , like most of us, that i couldnt go on with anymore, but from somewhere we find that strength,and im hoping and praying for that strength for those who are struggling now. just take one day at a time, tommorow really may be a better day.
nicky 08
hope you managed to get away, dont know what it was with no 4 but it was a hard one, wasnt it? but if its any consolation , up to know no 5 was a breeze.
im only on 4th day following fec, and ive even managed to get to seaside. (weather was a washout, but so what) i did it!
the bc nurses, say i will probably be having texcare or something next ,. havnt got a clue what theyre on about, and couldnt be bothered to ask after just recieving another dose of fec, so i will wait and see. but unfortunetly i have just found out my sister has bowel cancer, so at the moment i need to be strong for her.
keep plodding on, speak soon. god bless lorraine
hiya all
Everydaymatters, so sorry about your sister, why is it that it seems to be everywhere at mo.
On a more positive note, Ive been weepy but gonna fight like hell as I realised how much people do care, even if not around all the time. My dad has a large family with 3 brothers and 4 sisters, one of my uncles is only a few years older than me and although didnt see each other that much when shit hits the fan they are fab at ralying round and been great through this specsh seen as grandma died of overian cancer before mid 40’s. dad’s face is a picture at mo an dhaving a drink to calm down. his brothers had rallied him in and decided they are going to do a sponsored leg waxing to give me the money for the cancer suite I go to - I was so touched I couldnt speak but god it will be funny, they had a test patch tonight and whining like mad and they are soooo comical together Im really happy and realsied I need to fight for all those round me that care.
Love to you all
xxx
Hi
Lorraine bless you for arriving so jolly, I am struggling after number 4 so you have given me hope that it might improve. I think you will find you are having taxotere, the other T one is TAC but that is a regime on its own I believe.
Lisa you just go for it and let off steam, you know I do and it does you good. Have you got anyone who lives anywhere interesting to visit for a few days to get a change of scenery?
I am totally you know what. Had to phone the emergency reserch team again today and got to speak to them again tomorrow and probably go in to a clinic on Tuesday. She thinks my dose will have to be cut now. Thats fine but I don’t see any sign of getting out of the epi 4 side effects just yet. Trying not to eat very much and told to avoid any fruit like the plague. Cannot even sit on a chair, hurting to speak or swallow, sciatic nerve gone in sympathy, farmer giles, blisters, dry mouth, furry tongue. They think I have pockets of fungus right through my system - lovely. Feeling really sorry for myself and hoping for a miraculous recovery in the morning. Ok I’ll settle or a bit better then or being able to walk and sit down comfortably. .
Up from 3 -5 am this morning at the hospital with daughter this time, suspected appendix. It was Gastritis and she was sicking up blood so worried about her. so hoping for a good sleep tonight to catch up.
Hugs to you all
Lily x
I am off from this thread… fec 4 tomorrow and I don’t wanna go. not again. please no.
Off to join the newbie threads where I can pretend that it’s not so bad again 
Nah, jsut winging because I don’t really want the symptoms to get worse and I have reached a point where I don’t want any more drugs.
12 hours until next dose and I’m only just getting over the thrush and I have more ulcers in mouth right now than the bad week afer the frist dose… what the frack (battlestar speak) is the next dose going to do to me…
angie is quivering in her slippers a bit.
angie’s OH is nattering on phone and not noticed that I am really not great, but this is good.
Saw mum and it was wonderful but has changed my perspective. I asked her if she’s understand if I stopped the chemo and she said she’d understand if I had never even started it. I am asking myself what’s honestly worse… this is not something to go into here but were are braver than we realise because this isn’t easy shit.
Sounds like everyone is having a rough time but we are so strong to do what we are doing because if we didnt give ourselves every fighitng chance we would regret it and you never know it ten years time we could all still be here, fighting and fit and enjoying ourselves and we do know that on our good days we can be good and near normal (ish).
Vertangie - soz my head blank, is your chemo changing or are you still on fec? If so good look and you never know no. 4 could be a breeze, I found number 3 my hardenst.
Lily your side effects sound sooo bad, what is this from and is your chemo changing now? I hope its going to be easier on you.
love to you all - we can do it, we tell others its doable and we are at least half way now (I think).
Hugs
Lisa
xxxx
Morning Lovelies
Back from sunnier climes - I wish! Lorraine’s seaside medicine seems to help as I’ve come back feeling bright and breezy and you all seem to be having such a cr@p time with things and feeling so low. I won’t go on about it but we had a really nice break, just OH and I, and it was great to get away from ‘reality’ for a while.
Lorraine - sorry I forgot to wish you luck with FEC No5, we must be 2 weeks out now which is what threw me. Can’t believe you’ve got one to go and this one wasn’t as bad as No 4. I’m glad you’re my guinea pig in all this I’ve got another 10 days until No5, by which time I hope my mouth won’t be as sore as it is now (it’s nothing compared to Lily’s), my neuts will have jumped up after my injections and I won’t be dreading it as much as I am at the moment. So sorry to hear about your sister though. This must be very hard for you and also the rest of your family. I hope it’s been caught in time and the treatment will be really effective.
Angie - FEC No4 hey? I hope it’s a breeze and don’t read into how Lorraine and I were as you seem to cope with it differently anyway. I really do hope you don’t suffer too much and can bounce back up like you usually do but it’s so tough the further you go on and the more you know how you feel. I was more positive after No 4 about this all being doable as you really are counting down the treatments now. Although No 3 was half way I still thought I had to do everything I’d been through all over again (and didn’t want to) whereas now I know I’ve got less to do. Take care and look after yourself.
Lily - can’t believe you’ve been so bad this time your poor thing. Seems you’ve got all of the side effects and more. I can only hope it will improve from now as you’re not on Epi any more and what you have had will be getting out of your system. Bet this is really testing you as to what to do about the trial. I know there’s not much I can say that will help you when you’re feeling so low but know that we’re all here to have a moan at and also to send you cyber hugs.
Lisa - so glad you’re picking up and it’s so good to have the support of your loved ones isn’t it. Does your Dad and his brothers know what’s involved with the waxing? It must be so painful for them as they’re always so much hairier than us - well most times! I’m sure it won’t do them any harm - poor little things! The worry will be if any of them like the look after - they’ll just have to pretend they’re top athletes and they need to be hair free to go faster!
Take care all, we will get through this
Nicky xx
Morning Ladies.
Can’t pretend that I want to go today. Afternoon rather than morning appt which is good because I have an awful lot of water to get into me after the wine I drank last night, me and OH have a headache and hangover which isn’t the way to be before FEC. Am cramming nuxvom into me… oops stupid girl is me but I think I really needed to just relax properly for the night whatever the cost. Have started the day feeling nauseas and had a short nose bleed so going to have to drtink the spa tone too. At least the thrush is clearing now.
Lorraine. Can’t believe you and your sis are going to have to battle cancer at the same time. I hope the drugs work for her and don’t make her feel as sh** as you have felt recently. I think the gorgeous weather should help but sometimes it just makes you feel worse doesn’t it.
You mention texcare… sounds a bit like taxotere. If so I really hope it suits you better than the FEC did.
I honestly do not know why I’m being such a woos. I get off so lightly in comparison to most so what is my problem. I think I’just weary of treatment as it’s been 6 months already, and I’ve still got 3 to go but hey that’s 2/3rds of the way and after today’s fec (assuming OH can bundle me into the car) I’ll be 2/3rds of the way through chemo too. I’ll ask for some happy drugs while I’m there I think 
Glad you had fun by the sea Nicky, t’is great to hear, tell us all about it.
Hiya Everyone
Hope your weekends went well as they can be. I have made the most of the weekend with having a few drinks with friends and enjoying the company. This week is going to be busy, going back to hospital for the next round of treatments. Tuesday is my first visit for radiotherapy. Im not sure what they do on your first visit so feeling a little nervous. Wednesday is blood tests then Thursday having my Onc review and picking up my first lot of Xeloda tablets. Not sure what to exspect with the tablets, so a little nervous there also. The tablets seems to effect people in different ways!!!
Angie - Winge all you like it is good to get it out of your system. Hoping your next treatment is not as cruel. Big (((((((hug)))))) xx
Lisa - I think it is brilliant and very brave of your dad and is brothers to go through a waxing. When will the big waxing be taken place? I remember waxing my OH back once and he nearly hit the ceiling, very funny for me, but not for him!! Glad to hear your feeling a bit better. xx
Lily - Sounds like you are having it really bad this time. Hope you improve soon and let us know how you got on, on tuesday. Big ((((((hug)))))) xx
Big (((((hug))))) to all and take care
Kirsty
Good luck Angie with No.4, think the weather is nice and you can have short nice walks with the dogs!
Kirsty - glad you had a nice weekend.
Nicky - glad you had a lovely hols!
Lily - hope you okay chuck, hope you are twinnin with me today and feel a bit better
Well Im still giggling away at my dad bless him. He’s a porter at hospital and the nurses are queing up. We are going to do it at aunts house but the way everyone wants to see could turn into a good little party!!! He tore a strip of someone at work a few months ago and hes just called me to say the blokes only just got stubble now and they are in panic mode but they are all so funny that it should be a hoot and cheered me up no end, oh and its sunny!
Love to all
xxx
Hi,
sorry that was really insensitive of me to spook you Angie. I really should have disappeared or checked no-one was close to their next one. Hope it goes well, it should as you are much younger and fitter than me.
The problem was that nothing was done to prevent my problems on dose 3 and so I was not better when 4 came in and tipped the balance from system yuk to system overload. The pain level has improved quite a bit so managed to get out today. Thought it might help and it did but couldn’t walk more than a few hundred yards and carry a pillow around like a toddler for comfort! Not sure whether to go into oncology tomorrow, will wait and see but going to see a dentist to see if they have any cures, like pulling all my teeth out!!!
Anyway I got my wish, I do feel brighter and feel it will suddenly all come right. That’s the plan. I may now have my treatment delayed a week and reduced too. My sense of humour is coming back and when I tell you the story of the suppositories you will know that for sure. You have no idea what I have been up to this week.
Lots of luck to you all as we are all having difficulties in different things and I think we do a wonderful job at bouncing back from what they are throwing at us constantly. My symptoms are short term and you have been so sweet supporting me but I know all of you have bigger issues to deal with that won’t disappear so easily.
Big hug all round
Lily x
Lily, Don’t worry about spooking me, I was just wimping out. My veins did the same and actually jumped sideways when nurse tried to take my bloods today, couldn’t get them from that vein at all. It’s officially out of bounds now, not least because it won’t let them in LOL. Had no idea how much it hurts if they miss, yikes, blacked out so they made me lie down while she had another go
Still the 4th lots in now so just have to ride it out.
Lisa I feel sorry for your dads legs. I’m a wimp with waxing.
Right I’m off to do that whole flake out on sofa thing. Hope you’re all doing well this fine sunny evening. Thanks for perking me up ladies, even poor Tommy didn’t want me to go this morning. I said he might end up being the first hubby to punch a nurse defending his wife, he said he doubts he’d be the first LOL. They are lovely nurses but my body does not like those cannulas anymore, it knows too much
Angie
hi there girls
what a troup you all are.
encouraging each other when its so hard going at times, but helping each other is what gets us through i think.
i hope most of you rest soundly tonight and have a pleasant day tommorow. take care everyone. goodnight
Hi Everyone
Hopefully sounds like everyone is pulling through now - or pulling teeth as in Lily’s case And let’s hope the night-before-chemo drink hasn’t affected you Angie. I do know what you mean about the veins - they seem to get the picture pretty quick that they don’t like being poked and prodded. For bloods I now get them from my hand as my elbow veins are hardening up and they’ve never been super duper stand out and look at me veins anyway. If I get a good pblebotomist (sp? but what a great name!) then there’s no problems but the last time I went it was a bank pbleb who chicken out when I told her! They all say how they hate hurting people to which I usually reply ‘you chose the job’.
I’m currently on one of my good weeks so back at work each morning which I don’t mind as it gives me a sense of normality. I can then do what I need to get on with in the afternoon so hardly straining myself with work overload.
Kirsty - if it’s planning for radiotherapy they will get you to stay in position for quite a while whilst they mark you up with ‘tattoos’ These are used then to line up the machines each time. They are usually very small dots, I don’t think I can even see mine and certainly no one else would but I expect that will depend where the exact area is they will zap. It’s not normally any more complicated than that but I think some hospitals now use an ultrasound to pin point the area so this may be different to how I had it done a few years back. Hope all goes well with onc appt and the tablets are OK for you. I don’t know much about Xeloda but is this your next chemo? And how long do you take them for? Presume this is part of a trial?
Not much else to report except we had a lovely day on Friday in Eastbourne. Fish n chips on the beach (freshly cooked as advised by BCNs) lovely blue skies but a strong breeze as well so quite nice and quiet for school holiday time. Had a long walk up and down promenade and pier - thought we’d better go on it in case it burns down! Then walked (OK - drove) up to Beachy Head for a fantastic view. The wind was so strong up there I don’t think anyone could have jumped off if they’d wanted - they would have been thrown back down on the grass. But lovely to have some fresh air. We then drove to Tunbridge Wells as wanted to stay in the Hotel du Vin there. Really lovely and had a great meal. Spent the rather wet morning in T Wells - a very nice town. Then drove home for a leisurely evening with no kids at home - hooray! Went back almost the same place when we had to collect youngest daughter from Gatwick from her exchange trip. At least she had the sense not to bring me back some ‘lovely’ souvenir from Toulouse but got OH and I 3 bottles of wine from the ‘cave’ near where they’d stayed near the Med. She had sampled the same wines whilst there and seen the vineyards where the grapes were growing for this year so she was very impressed. Only downside of going back to Gatwick was that everyone was off on their hols except us - it is so difficult to deal with at the moment isn’t it? I shall call this the lost summer of 2008. If anyone else tells me they’re off to so and so or just had a fab hols I’ll punch them!
Anyway, take care ladies, hope you are all on the mend or having a good week.
Nicky xx
Morning Ladies.
Side effects not bad last night and did sleep despite being given dex at 4pm.
I know what you mean about the lost summer Nicky, hence me almost kicking the in laws out when going on about their wonderful cruise down the nile LOL.
Anyway I don’t know if any of you lot know ScienceCentral but I being an information junkie get their newsletter.
There’s some huge news re cancer research and early early detection, having a fascination in genetics etc I’m pretty sure this is a huge one.
Cancer Blood Tests.
If you want to read it but can’t find it ask me and I’ll send you a link. Amazing.
Right dog and OH lurking waiting for walk
GTG (got to go)
Angie
Hi Girlies,
good to hear some of you are feeling more normal and so sorry to hear others are feeling grotty. Wouldn’t it be good to be through all this and out the other side it is like living through a nightmare with semi normal parts to it. I am back to the onc this afternoon will have bloods done and 2nd FEC tomorrow ugh! dreading it. Not sure whether to do the cold cap again or not as masses of hair decided to come off in the shower today. My lumptecomy is still a fit angry looking so not sure if the infection has completely cleared hope this doesn’t affect the chemo (not that I want it but it would be even worse postphoning it)
Nicky you sound as if you had a good weekend I like Eastbourne (it makes me feel young full of retired folk).
Lily hope your body is coping better and you are more comfortable.
Angie hope you are feeling o.k.
Lisa report back on the leg waxing hope they raise lots of cash aswell as a laugh (or cry!)
Kirsty good luck with the radiotherapy
and wishing all peace!
love Bevy x
I don’t know how some of you do the cold cap actually. I was told that you can get almost to the end and then still loose your hair. I couldn’t stand inflicting more bl**dy waiting on myself so shaved head and said right get on with it. In this humidity it’s been great. I’ve seen people wandering around blowing their sodden hair of their faces huffing and puffing and yet I’ve been able to whip the buff off for 30 secs, cool off and off we go again.
If you’re going to be skinhead this is the weather for it.
Maybe I just never had a great hairstyle worth keeping or something ;0
Bevy FEC 2 tomorrow. I found that one the most depressing the night before, the only saving grace is you know what’s coming and do tell the nurses all the symptoms and if you fond any off them unbearable, even if just for 1 night SAY SO. Just one little med change could make it better than round 1. I found that simply knowing what was coming made me less stressed which helped on round 2 anyway.
Good luck with it, and you’ll be a 3rd of the way through, or I managed to cheer myself up with idea that in a month I’d be half way.
being on no 4. I now see it as the penultimate and ultimate await me (so long as the veins let them in, cause I am not having a portacath or whatever insterted for 2 rounds, no they can and will find the veins, I will make them
Right off to work for me, it maybe chemo week and I may have pins and needles and slightly dodgy vision but if I don’t finish these 2 websites this week I am in deep deep sh**.
Lots of love, don’t worry if I’m not around, that’ll be the websites
Angie