Well stuck here in a wee side room in hospital. Couldn’t get out of it… As much as I tried! Lol
my temp still hasn’t gone above 37.7 and was normal when they admitted me, but my blood results prompted them to keep me in. I’ve had one wee infusion of the most disgusting tasting (why can you taste it when it’s put in your arm??) antibiotic. Temp is 37.6 this morning so looks like I’ll be in until Monday at the least! Aaargh!!!
Doesn’t this all just suck?!! I have a headache and a soreish throat, but that’s it !!
Omg! And there’s a wee woman on the ward who screams ‘help me!’ all night!! I don’t know how the nurses haven’t shoved a pillow over her face to shut her up! I’m shattered!
I wish I hadn’t flippin bothered with the out of hours doc! But then I know they wouldn’t keep me in unless they needed to.
Sorry if any of this doesn’t make sense…it’s kinda hard to read it back on my wee phone screen!
Hxx
Hope you’re all well & your side effects pass quickly!
I must say, the 2nd FEC has wiped me out! Have had a sore throat and the usual constipation but its the tiredness thats really bad. Back to work tomorrow, tho after the 3rd may have to think about taking nore time off. Then I will have the delights of tax to face…
sorry, they’ve kept you in, but neutropenic sepsis is serious so better there than dead at home! When I was in A&E with my infection I spent 5 hours reading the ‘what to do in cases of neutropenic sepsis in chemotherapy patients’ flow chart on the wall - it mentioned organ failure etc. Not the most encouraging thing to have on the wall lol.
And isn’t that drug weird - can’t remember its name but they inject it and about 30 seconds later you get this really odd taste/smell - very bizarre - it must zip round the veins really quickly and emerge in the taste buds.
How come you can still post on here from hospital? My phone didn’t work from the ward - was out of touch with everyone, didn’t even have a phone/tv/radio in my room.
As for the screaming/shouting patients - hospital is not the place to go for a rest - it’s full of people trying to noisily escape as far as I can tell - and being told off loudly by nurses at the end of their tethers.
Anyway, hope you improve soon, the drug should work and you’ll be up on your feet again early next week. At least you got your trip to the football.
Hi girls,
Oh Hayz and Gemjunkie, you two have really been through it. Makes me feel a bit of a fraud whinging about a few aches and pains. Hope you both are feeling better really soon.
Julia, I found the second FEC worse than the first or third so hopefully you’ll feel better on the next one.
Love to you all,
Jane xx
Oh hayz darling sorry you are stuck in la la land but your blood cultures and neuts must have been bad to give you intravenous - when i was in hosp with neuts sepsis on first FEC my neuts were 0.80 - if they go under 0.50 its very serious and needs intra - thats what i was told
Weird your temp is still low - just took mine 36.8 so not going in to hosp yet - got to start antibiotics today - may help - I am now allergic to penicillin!
The sweating is a litle bit better - managed to sleep for 3 hours - obviously cooling me down but now the burning arms are driving me mad - scratching them the whole length and hands red - legs itching too - this feels like allergy - but what can i do?
Are the family allowed in to see you - they must be so worried - have they been in touch with your onc?
Keep your spirits up ove and ask them to bring you sone earplugs in or a gag for the old screamer. xxxxx Lyn xxxx hugs xxx
Dr came to see me earlier. My count was 0.6 last night, but has gone down to 0.4 today! Fab!!
He’s contacting my bcn, onc & haematologist to see what they want to do as far as further treatments go.
I’m bored stiff! In a wee side room with a telly but no signal. Thank goodness I lifted a few books n I have the Internet on my phone!
OMG you guys, how mental for you! So pleased you can access the real world Hayz, least you can keep up with what is going on in the world! Shouty patients are testing aren’t they? I spent a couple of hours on the ward and there was a lady who spent most of that time rifling through a multitude of carrier bags - I felt like getting out of bed and tipping the contents onto the floor so she could see what she was looking for! You should have heard the row she was making…was like a demented rat.
Having hideous sweats at night too Lynn, feel like I stink like a little piggy, and getting a bit OCD about having clean jammas.
Being swamped tomorrow 5th Tax, and am just going to try and go with the flow this time, and spend time in bed - if I can. Got a late appointment (1130) so imagine it is going to be a really long day! Got a whole heap of questions to ask, so am going to give the onc a run for his money too - hope I see the consultant and not the ‘boy’ that I normally see. One of my questions will be about the sweaty hot and chemo chilled nights - will let you know if they come up with anything useful!
Off for my steroids, change my bed, hoover the lounge, sort out the cat tablets, pack a bag to take to my folks, and either wrap a few pressies or write some cards…oh thank the lord that I am able to do mundane things - cos I think that this time next week getting up the stairs will be challenge enough.
Keep positive as you can - even though things are freaking horrid. So nearly there, even that seems little encouragement to go on doesn’t it…but in reality we ARE nearly there.
Big love to you all - hope you’re soon home H, and that you (Lynn) and any others that are feeling pants, soon feel perky again.
xxx
Hi Ladies,
I feel like I have just started crawling out of a living nightmare. I had my 1st TAC chemo on 8th Dec and having read many of the posts on here thought I had some idea of what to expect…HOW wrong can you be.
Tues went as good as chemo can go, came home, bit warm, Weds morning bit warmer and pinker but fine. Weds night kicked by a horse, my ankles and knees were being sawn off slowly, drank a resevoir of water.Thurs same but worse,Flu like multiplied by 10 now I wanted someone to cut off my legs,everything sounds so much louder, smells so much stronger and tastes like crap. Can’t walk accross the room, poor hubby does’nt know what to do or say and I am wondering how the hell I am going to make it through my CT Scan tomorrow.Friday morning no sleep last night, just want to curl up and cry,transport hour late because its a pea souper out.Made it through scan and waiting for transport back for 2 hours,nose bleed then feel like I am drowning in my own fluids (sinus) constantly running down my throat.So much that I am continously swallowing or coughing.
Why am I so stubborn, sinus keeps up all night and 2 more nose bleeds, is this chemo SE or due to the injection they gave me at Scan.Sat morning 2 nights without sleep,can cheerfully commit murder but its 1st day of antibiotics pleasssssseeee let them help.
Sunday, sat up in bed last night and slept some, feel like I may be coming back to life slowly.So while I am on the right side of sane can someone who has been going through this for longer please help.
Do the Side Effects change each time.
Has anyone else had the sinus problem
Do they get worse or stay the same.
Where can I run away and hide.
Hi ladies, Helen so pleased you’ve got through your Tox did you have a nice dinner party? I’ve had rads and only had tiny dots one gone since my second op, I used aqueous cream it was brilliant I looked a bit red but wasn’t sore at all,lather it well on.
Hayz hope 1st Tox went OK didn’t know about nails, can’t imagine me with dark nails, still I might give it a try, suit my new look LOL.
lynB I know how you feel I had a bad time with my Fec on weds I had a panic attack during treatment been really depressed this time ,(first time on a high) but today Sun I’m picking up, as we do thank goodness a few SEs mainly stomach.
Thank you all on these pages all the niggles and pains we get someone out there has been through it it’s such a help.
Sorry I can’t name everyone but good luck to us all onwards and upwards.
Jane hope your feeling better. Hayz How you doing home soon I hopeXX
love Kath
Hi again I can’t remember who said they had a sore vein from the 1st FEC did you have the 2nd in the same vein? Trying to find out why I had panic or anxiety attack? Cheers Love Kath XXX
Hi girls,
The sleeping tablets prescribed for me are Zopiclone, am supposed to take 1/2 tablet for a couple of hours sleep but I must admit to taking one tablet which knocks me out for a whole night but not enough to keep me asleep if I need the loo. I think they have been fab because on the FEC I would have a week of hardly any sleep and that is so hard when you are not feeling great anyway. Because I am also on Effexor for anxiety, I wonder if that is why I haven’t had the sweats day or night. I do get them but not very much. Effexor is supposed to suppress them.
I’ve taken some pain killers today, only paracetamol and codeine and have to say I don’t feel too bad. Sore tongue, stomach (really hurts if I hiccup) and finger tips but all body aches are more or less gone. Bit tired though.
My veins in my infusion arm really hurt, one in particular, Kath they will go into different areas, not the same vein. On my TAX they told me they could also go up the arm. I find the vein ache comes and go’s. Actually had bruising from the TAX but still hoping not to have a line.
Dawn, I have had no sinus problems but I think there are others here who have.
Hang in there Hayz and Gemjunkie, we’re all thinking of you.
Good luck tomorrow Loocie, you’re nearly done!!
Best wishes to everyone, keep smiling,
Love Jane xx
Good luck
I like JC I take Zopiclone to sleep - without them I am wandering the halls all flaming night and my GP is of the view that I need my rest and we will deal with any dependency issues at the end of my treatment - there is another sleeping pill I could use but that causes constipation and I have enough issues with that cause of the drugs and steroids !!
I take a half each night (provided I haven’t had a drink which is very very rare) and I sleep just fine for 7 hours or so
Hi girls,
Pains today back to minimum, think the paracetamol and codeine def helped. Fingertips still a little sensitive and tongue has got the thickest shag pile on it I’ve ever seen. Still got yeuchy taste but not so sore. Hopefully I am on the up.
Must start taking half a sleeping tablet and not a whole one at night. In fact think I will try and do without altogether!! Shall have to explain to the Onc where they have all gone!!!
Have started to get a few itchy red patches on my infusion side hand. Not doing very much yet but I think someone else mentioned this. Seems to be mainly between fingers and thumb and finger. Certainly looks worse than it feels.
Well, guess I better get on and finish the crimbo cards now my fingers are more comfortable. There’s always something to do!!!
Hope you girls are all ok, get your thick undies out we’ve got snow coming!!!
Keep smiling,
Love Jane xx
Hi all, only just back from secon tax - bloomin long day!!! All Ok, but have some news on things to help with SE’s, so I thought I’d share.
The onc says that it is OK to take Aloe Vera, which should help with skin and any gut discomfort. And, it is OK to have the probiotic drinks and yogurts to help with managing thrush and the constipation / runs things.
He suggested taking 10ml of lactulose whilst taking the ondancetron to stop the constipation starting, but to knock it on the head once you stop it, so that the runs don’t kick in. He suggested either oil of evening primrose or sage tablets for the hot flushes.
Finally, he recommended mouth washing with corsodyl from day one, for about a week to stop the fury tounge, burny gullet thing from starting. All sounds good to me, and this is what I shall try for this cycle, but the proof will be in the pudding…let you know
He did say that the first Tax after FEC is normally a killer, and that it does get better, so I’ve got high hopes for this one. Been given antibiotics to start on day five in the hope of keeping my line free from bugs.
Hope that you are perky - off for a chill out now
Lotsalove to all, and a positive big hug to ya
xxx
omg omg omg - glad i am not the only one losing it on TAX - (sorry ladies dont really mean that) no siuns probs and no aches yet - day 6 but the night stalking and screaming abdabs recognise big time -
i took 1 - 7.5 mg zopicone at 3am and slept until 8 am before waking in a cold wet towel! still comatose but awake.
Still very very groggy today but not capable of doing anything - even write a Xmas card!
Think TAX is a bit of a mixed bag and we need to go back to old threads to make some sense of it.
Hope you will survive this one better Loociex
Dawn you are going through hell too babes - the lack of sleep and sweats are whats doing me in - but also nooooo energy at all.
Feeling a bit better today as I have my son visiting - cheered me up to have some company -just hopig for more improvement daily - see Dr Dish the onc tomoro night! xxxxxxxx
Hi everyone feeling more in the land of the living today, still one goodish and one bad so should be able to deal with anything now especially with all your help, thanks.
Marli how you doing did you enjoy your curry? my next is 4th Jan as they’re closed 4 days over Christmas and New Year.
All the best everyone. Love Kath XX
Loocie hope your home and feeling better X
Hi Kayteedid - had a brilliant night , ot til 12.12am so fet wuite normal. Have managed on half dose of antisickness tabs.(that was to stop contipation!) and it worked. Moved onto heartburn and quite tired but out tomorrow night again - am making the most of being so well. I have been very lucky. Hair dropping out is driving me nuts, sick of hoovering the bed but go for wig fitting Thurs,. Just being trying to hang on to some until I go out tomorrow then will just start combing everyday and put up with it falling out. At moment the hair thing is the worst for me but my friends are all able to laugh with me and gibve me support.Did not realise how good friends and collegues they all were. Hope you have a fab Christmas and New Year to get you ready for the next one .
Best wishes to everyone, hope you are all coping well. Love Marli.x
Hope everyone’s ok. Sounds like everyone has been having a rough time. Nearly the end now!! Just a quick one cos have been on the phone to hospitals all night. They think i may have swine flu, will find out tomorrow, don’t feel too bad, just a really high temperature and runny nose.
Anyway, just wanted to let the 5 Fec’ers that i am stopping after 5 with full agreement from onc. I spent 2 nights throwing up in hospital last week after last one and phoned up and said i oulcn’t face another 48 hours constant vomitting and was it worth it for extra 1 treatment messing myself up mentally and physically. He said there is no clinical evidence to say 6 is any better than 5, they know 3 or more is better than less but 12 is no differnet to 6. i hope that makes sense!!
So if anyone else has been hit badly by 5, ask!!
Just wanted to pass that on.
Lots of love to everyone and hears hoping the piggy stuff goes away
I chickened out after four - also with the agreement of my onc - he suggested it! Apparently you need to do four to get most benefit, anything after that is just topping up.
Join the recovery club! I’ve also got a horrendous cold - disgusting stuff coming out of my nose, but think it’s just a viral thing, nothing nasty.
It seems that we get through chemo and our immune systems are so low we get hit by every bug going.