OMG Helen!! -
What a nightmare!! I thought something was up as you had been ‘off air’ for some time. Thought it was just all those awful side effects. It sent shivers down my spine just reading what you had gone through. I was in a ‘nursey’ way quite interested to read what bug it was - never heard of it and will google it. The common ones found in the blood and wounds etc are pseudomonas and staph aureus so have never come across this one. Glad you are back in the land of the living. OMG it’s bad enough dealing with all this without added complications.
Trumpet - hope all goes as well as poss for you today
Hazel - you don’t sound too bad for day 4 - bit loopy but that’s ok hee hee.
Loocie - I know what you mean re the lampost thing, try anything, but maybe that one is just a step too far!!LOL
I’m back tomorrow - yuk, yuk, yuk,(dreading it) for round 3 (I think along with Jane and Karen - good luck to you both too).
We’re certainly keeping all the Doctors & nurses in a job aren’t we!
I think by the end of all this I could almost pass a whole section of nursing assessments!! Certainly more up on all the medical lingo & what’s what now…was way more knowlegeable than my GP the other week who was encouraging me to take paracetamol to bring down my temp…ERM…NO!!
Don’t ya just love the insurance thing tho! Obv would rather be healthy, but mine’s paying for a 3 week holiday to Florida & NYC next year…with luck I’ll be healthy enough to go for Thanks Giving…haven’t been for 2 years & the kids aren’t impressed & I’m desperate to hit Abercrombie! At the moment I’m dealing with the living room!..finally worn my husband down for the new suite I’ve had my eye on! LOL…‘but I’m sick & I need a nice new comfy couch to lie on!’ PMSL! …maybe Chemo has the odd advantage!!
…just wish I’d taken that Critical Illness cover tho & my flipping mortgage would be gone too…how good would that be!!
Hmm Lynn, not sure you should google anything. I did and scared the living daylights out of me. But then today I met my very nice Czech oncologist who saw me in hospital who said he’d been doing the same thing and studying my bug as well! Apparently it’s a bug which is growing to be a problem, sort of a MRSA in the making…
I’m certainly learning a lot about line care - I was pulling all the nurses on the ward up on it when they forgot something, like not sterilising the port before inserting the drugs or not flushing my cannula properly before and after inserting the drugs. I felt bad about it until one of the sisters said I should absolutely do this - it’s my body and if they do it wrong then it’s me who suffers. They must have loved me!
And I discovered why my nice female onc never came back and saw me on Friday - because she’d had a massive asthma attack and got admitted to the same ward as I was in! I never saw her, though, chained to my bed as I was.
And they’ve decided I’m well enough for chemo on Wed, bugger! Was sort of hoping I could stick my head in the sand and firmly deny I was due chemo for another week or so.
Yeah Hazel, wish I had critical illness cover too. It went with my job which I lost as I was diagnosed. Oh well, have to keep living on the oh-so generous ESA. Might pay for the petrol for the endless hospital visits.
I hope you’ve looked into all the benefits you might be entitled to? I’m sure we’ve all worked hard enough to claim something back when we’re having such a crappy time of it!
I’m going to go & see a friend of mine who is a McMillan specialist in the benefits office in the next few weeks to see if I’m entitled to anything. I’m at least hoping for a McMillan grant to help me with travelling once I have to start rads. A trip into Edinburgh every weekday for 6 weeks won’t be cheap & I’ll be on half pay by then. I’m hoping for DLA as well as there’s a lot I can’t do now with my sore surgery side & my wrecked chemo arm (anyone else have an amazingly sore arm on their treatment side?) not to mention the psychological effects & the days you can’t physically shift yourself out of bed! Not sure how I’ll get on, but it doesn’t cost anything to apply…and my wee disabled badge is a Godsend when I’m having a really crap day!..don’t use it when I feel well enough tho.
Chemo number 3 for me tomorrow. Went for blood test today so as long as my immune system is ok I will be chemofied tomorrow afternoon, back to bed and wait for the awfull side effects to kick in. My dread is a temp and being hospitalised. Helen it sounds like you have had an awfull time and I really hope things go better for you now. I am hoping that my veins dont give up on me as I really dont want a line due to the risk of an infection. The chemo nurse told me that the Fec was doing the damage to my veins and the Tax is not as harsh so hoping they will last out for the next 2 lots of Fec.
Good luck to everyone getting chemofied this week, hope the side effects are minimal.
Love and hugs karen xxx
Thank you Anna
Good luck for Wednesday. Really hope you dont suffer as much this time. I will have 4 to go after tomorrows. Seems a lifetime away.
Take care
love karen xxx
Oooh finally had FEC three yesterday after two weeks delay. Forgotten how bad this stuff is. Feel like I’m emerging after a three day bender complete with dodgy kebabs thrown in for good measure.
Not convinced about my new wonder drug antiprepritant (Ememnd), feel more sick than I did on the Ondanestron.
At least I can now finally say I am halfway through it all. Last one on New Years Eve - great party that will be! At least Christmas is looking better now.
Hi everyone,
sorry to hear that you are feeling rough Helen, but just think if it makes you feel that bad imagine what its doing to the cancer!
And Karen i remember feeling like the last chemo was so many miles away but had number 6 yesterday and now only 2 to go! Thats all being well, 6 weeks until last one, and my picc can be out after that too. There have been so many times when i have thought i cant do this, i think everything has scared me, but we get there taking it day by day. Lol, i will need to read this in a day or 2 when the side effects kick in, someone remind me when i am on here whinging how bad i feel!
take care
anna
Hi all - hope you are faring well, and that the SEs aren’t getting the better of you?
I can’t believe I’m up for round three on Monday - don’t feel at all ready for it! In fact, I’m pooped and could quite easily stay home and flop about all over the place. I should tell myself off really, afterall, Monday is the last FEC - hurrah…it means I’m half way through my treatment - hurrah…it means I’m moving on to Tax - oooo errrr! So pleased I have you all for company, but sorry you’re going through it too!
I’m having a sulk today as I can’t see to be able to get on and do a) what I want to do and b) what I should be doing. My get up and go, has gone on vacation! I guess it will come back…well I hope it does.
Need to go and liberate the clothes that stopped spinning in the washing machine about twenty minutes ago, and, get another lot on. Will feel like I have achieved something at least today. Will try and get over myself at the same time!
Lol, maybe its your body saying rest before the next chemo, nothing wrong with that! If you do it today it will only need doing again sooner!
good luck
anna
How has everyone been coping? I had my pre chemo blood test today and it hurt so much! It still stings now, and the nurse is like - oh sorry I may have nicked a nerve…??? Lucky me eh.
Just telephoned to see if my results are in but they aren’t so must ring first thing tomorrow and find out if I can still have my swamp juice. I hope I can to get it over and done with then I’m 50% through my chemo - yippee!!
Had my third and final FEC on Tuesday - hooray! but next lot will be Doxetacel. Think I’ll cross that bridge when the nausea passes. Struggling today, day 2 is worse than day 1 for me, almost a delayed nausea, weird. I asked them to reduce my dose but they wouldn’t!
Helen - My nausea lasts about 12 days. They have given me the ondansetron as well as the Emend (and steroids, which just seem to tweak up my stomach). They have also given me a drug to take which she said was extremely effective called Nozinan. I haven’t taken this yet because I have taken the Emend, Ondansetron, and steroids and am literally sick of taking so many pills but think I will try tonight. Supposed to make you sleepy too which is a bonus.
Anyway I am off to do something - I don’t know what…LOL it’s that feeling that you just don’t know where to put yourself. Do I read, do I go back to bed, do I eat, do I drink, do I take more anti-sickness pills… aarrrggh so many pathetic decisions it’s scrambling my brain!!
To all fellow fec-ers - keep strong, hope your side-effects are minimal.
Lynn xx
Yes, Lyn, completely agree with those feelings you mentioned. You just don’t know what to do. I continually feel dirty inside and out after the treatment and am just obsessed with trying to make myself feel clean! You just want to put yourself in a place where you feel comfortable and normal but i can never find the place. I try eating, bathing, reading, watching tv, listening to music and everything feels just funny. Does anyone else feel like that??? Am going to try and do something totally different like painting or knitting or airfix!! Just to see if i can feel something ! Maybe trying to feel normal is not the way.
Anyone have any ideas?? I have had reflexology which was really, really relaxing and well worth a go!
Sending my love to everyone and we are another day closer to finishing the treatments!! xxxxx
Hi Ladies,
Not really back in the land of living yet but had to come on here and see how you are all doing. Had FEC no. 2 Tuesday and it def wasn’t as kind to me this time. Was very nauseous later Tuesday even made me sick which is unheard of for me. Felt really yeuch since and foggy head has kicked in today too. Last time the nausea finished today so I am hopeful. Luckily I have been able to sleep some of the time and have def slept better at night this time.
I know what you mean about not being able to settle, tried watching tv but it has to be really easy watching nothing technical, tried music, reading but worried about giving myself a headache and not being able to take paracetamol to clear it. Not that I want to take any more tablets!!! Don’t know what I want to do wish I could go to sleep and wake up next week feeling better. Hey ho thats not going to happen. Still only one more to go and then Tax.
I did notice my nurse puts all my cocktail in very quickly. I read somewhere that sometimes its better if it goes in slower. Anyone also read that?
Well, I am off, not sure to what…
Love to you all, hope you are all feeling better for the weekend!!
Jane
Hi Trumpet 1
It’s me! Maria’s friend (and yours too!) Just thought I’d say hello. Since I emailed you this afternoon, I’ve had mega heart burn! Just taken some Gaviscon, so hopefully that will ease it. Hope you’re feeling better now.
JC - I’m no vetran of the ol’ swamp juice (day 2 of my first FEC) but my nurse did mention that she thought it was better to administer it slowly, but it was really personnal preference. Maybe someone else knows something else.
Have been feeling pretty yeuch since 3rd lot Tuesday, nausea improving but now have terrible lumpy throat and thrush in throat. As soon as one things subsides up pops another thing to deal with!!
Actually started to feel like Lynb the other day - when you feel so rough I just question if I can take any more physically and mentally.
Trumpet - Until I feel a lot better which is usually around day 8-12 (depending on side effects) I can’t settle at anything. I agree it’s difficult to do anything or concentrate on anything - it’s all very odd. Also my strength and energy are really sapped the first week so that limits things too!
Jane - I think that is possibly right giving the dose more slowly. I don’t know what the norm is but mine takes around 30 - 40 mins. How long did she take to administer yours?
Well, once again you little diamonds have come to the rescue. I thought it was just me that felt like i had ants in my pants. I’ve been unbearable these last two weeks and haven’t achieved anything much until this afternoon. Like you say Trumpet, if only it is possible to find the comfortable place…
Has anyone found that their eyes have been affected? Week one, I can’t read as it looks as though the words are sliding off the page, and in week three I get really watery, gritty, puffy eyes. I’ve been using Boots ‘refreshing’ (well maybe for normal people they are) eye drops, but still really uncomfortable. Am going to ask the young buck of an onc whether he can suggest anything else.
Hope you lovelies that were swamped this week are doing OK…joining your gang for round three on Monday - then we can look forward to the second course, namely Tax; be lovely to have someone to share that experience with too.
Happy fidgeting May you find your comfortable place (I’ll be jealous if you do)
xxx
I have the eye thing too! I thought it was just my eyelashes desserting me & leaving my eyes open to the elements!! … :o(
My eyebrows look amazing just now!!..plucked to perfection…only they haven’t been touched since I was diagnosed…so, really they should be taking over my face…I just hope they don’t get so thin they become invisible! …not good :o(
hi Loocie im now coming towards the end of my chemo… only 1 more to go but have had runny puffy eyes since early on… although they are waterey this makes them dry… i got hypromellose drops from the chmoe ward which work great but for the week before chemo is due they get much worse again so i have also been prescribed lumecare tear gel to use aswell… since most of my lashes came out a few weeks ago i find they had gotten dryer… maybe due to more dust getting in cos the stubbly bits of lashes dont protect them so well
hope the eyes improve though…
hayz iv hardly done anything to my eyebrows too and even though all the long hairs have fallen out the wee ones are hanging in there giving my brows a nice shape.
May you find your comfortable place (I’ll be jealous if you do)