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December 2016 Starters

Running girl 53
Member

Re: December 2016 Starters

Just echoing WMJ's message. Big big pat on the back to you Lenny GK. Hope you feeling better today. Dont know whether its because i've managed to drink more water this time but (fingers crossed) i dont seem as bad thus time. Think i shall be able to return to work tomorrow. Its a good job i dont feel too bad as early morning drama of radiator leak in daughters bedroom. Nice soggy carpet and gas board booked for tomorrow. Still its been a distraction! Lol. X
WMJ
Member

Re: December 2016 Starters

Hope you have as good day a day as you can today LennyGK. Keep posting back and letting us know how you are feeling, we are all here for you. Take care XX

LennyGK
Member

Re: December 2016 Starters

Thanks so much WMJ and Snail888! I will def take my own temp before chemo each time from now on or bring my thermometer - good thinking! You always say such lovely things WMJ and cheer me up - thank you 💕 x
Rooner999
Member

Re: December 2016 Starters

Morning all. 3rd fec done on Friday; not looking forward to the next 3 T!!

Anyone else getting a loud pulsating heart beat in their ears; mainly when lying down. I've had it a few times but really kept me awake last night.
Mooney
Member

Re: December 2016 Starters

 
Snail888
Member

Re: December 2016 Starters

Because I'm a pain in the ass I take my in ear thermometer and if I don't like their temp I take my own and show them. Only done once but I agree they are a little haphazard. They should have listened when you said you felt rough. My chemo.burse sometimes that is the only sign and their isn't even a temp. I do hope.you feel better very soon xx
WMJ
Member

Re: December 2016 Starters

OMG.. I really feel for you LennyGK.. Like you I was unusually tired a couple of days before my third session, I put it down to overdoing things. I was also worried about my bloods, but they were fine. However you expect to be tired when having chemo plus you have 2 children also. I think you ladies with little ones at home are real heroes and deserve bravery awards. My son is grown up and no longer lives at home, so we only have us two to think about and that can be bad enough. So you deserve a big big pat on the back for that, you are superwomen. I know you probably don't feel like it at the moment but you really are. You are right the nurses don't always put the thermometer in correctly. My OH took my temp before we left for the hospital because I mentioned I had a headache. I have decided I will do my temp before we leave for the hospital each time now, as at least I will have an idea what it is when they take it. However if your bloods were good then that's proof enough you are okay. Perhaps the chemo aggravated the infection, who knows and it is no consolation to you at the moment. I wish you a speedy recovery and am sending you a big hug. Keep in touch and let us know how you are doing. We are all here for one another. Take care XX
LennyGK
Member

Re: December 2016 Starters

Hi All - haven't posted for a while but have been reading all your posts and wishing you all the best through these rotten days after chemo. 

I was due to have my 3rd FEC last Thurs and was dreading it. I felt so tired the few days before and on Thurs felt wrecked and had a headache but I was blaming this on getting rubbish sleeps for the last while which I blamed on my husband snoring and my youngest refusing to sleep in her own bed lol! I didn't think it was anything I needed to mention when I had a very brief chat with the oncologist who then sent me away to wait for my blood results and forgot about me for 2 hours - grrr! Anyway she said all was fine and I got the chemo but afterwards I was so so cold and couldn't stop shaking. By the time I made it home all I wanted to do was sleep and warm up and took my temp which was 39.2! I find that when the nurses take my temp they never put the thermometer in my ear properly and this was the same with the nurse who took it before chemo. I'm assuming if she'd taken it correctly she would've picked up this temp and my chemo would've been delayed. 

Anyway the helpline insisted I came all the way back to hospital and again the nurse took my temp in both ears which gave a normal reading - I then took the thermometer from her (fed up not wanting to look rude as this was too important) and it read 38.5 when I took it! 

So I was admitted and will be here until Tuesday at least - so frustrated! At least when I was having surgery I had everything planned before my hospital stay. I'm on 2 sets of IV antibiotics while they wait for more test results but it's either a urine infection or picc line infection or both! It's in my blood and the oncologist said this is dangerous made me feel rubbish when she said I should've told them I was tired and had a headache as they wouldn't have given me the chemo. I'm a mum of two and I'm always tired - I doubt telling her I was tired and had a headache would've made her delay chemo when my bloods were fine at that stage. I think they need to speak to the nurses and get the thermometers put right into your ear rather than make me feel rubbish for not telling her I'm tired. I had noticed a strong smell from my urine (sorry!) over the last week but had no other symptoms so hadn't mentioned it either. I don't want to be a Moaning Minnie and never away from the doctor with every slight thing that's wrong with me but they're making me feel rubbish for not mentioning these small symptoms! We are all trying to be strong and get on with this and I'm not the type of person to mention every ache and pain! 

Sorry for the rant - just annoyed with the way the oncologist seemed happy to blame me and when I told her the nurse hadn't taken my temp right she looked at me like I was talking nonsense! 

Cant tell you how much I'd rather be at home over these horrible post chemo days but at least I'm not stuck in hospital over my good weeks. 

Big hugs to you all x

WMJ
Member

Re: December 2016 Starters

Yes me too, swollen glands, sore throat, just as you explained. Plus like you can hardly lie on back or sides, 1st time around it was excruciatingly painful, second nowhere near as bad so hoping this time even less so especially as I am taking Loratadine. X
Snail888
Member

Re: December 2016 Starters

Nice to see you're back sal (sorry aurocorrect). Ranting is good, releases emotions xx
WMJ
Member

Re: December 2016 Starters

No need to apologise for your rant SALowery... We all do it and need to do it. So just go for it and deservedly so.
Hoping you have a better day. Be kind to yourself. X
SALowery
Member

Re: December 2016 Starters

Thank you all ladies was a rough ride yesterday, had a fit full sleep and lots of tears but today's another day, sorry for my rant, but it does help knowing I'm not the only one gong through this rubbish ( sorry ladies because I don't wish this on anybody ) hope you are all ok this morning and sending my love

Xx
Snail888
Member

Re: December 2016 Starters

Wmj I tend to get really swollen lymph nodes sides of face back of neck and can hardly lie on my back or sides. Also pain in middle front ribs where I know some white cells are made. Leg and pelvis bones not too bad. Last time I took 2 loratadine on day 3 and 5 of 7 days of injections and had liver bloods done day 12 so 5 days after. However I was also doing 30 minutes a day on my bike, had a cold sore and a period on blood day all.of which could be the culprits. Hopefully this time all will be OK x
WMJ
Member

Re: December 2016 Starters

I started Loratadine yesterday Snail888, as I thought the gcsf injection was causing the 'bruising, type pain across my body I tend to get day 2 & 3, but my consultant said it is possible but could also be a reaction to steroids. I am thinking the pain is already starting up my kneck, hoping it's my imagination. I noticed that if you have liver issues you ought to take it every other day but wonder if that would help. Hope it works for you and liver issues are resolved, I sympathise as I know phlebitis is not nice at all. Take care x
Snail888
Member

Re: December 2016 Starters

From what I can tell fec is very tough on veins I'm having some phlebitis issues too. There are some options hickman, picc line and port a cath. I think also worrying about it makes things worse. What a journey. Hope the bruises start to heal up soon. I'm getting ready for gcsf injections today which make me rough. The loratadine work but may have thrown liver off so I'm going to have to try to ride the symptoms this time. Take care xx
WMJ
Member

Re: December 2016 Starters

OMG.... this cannula thing seems to be a real issue this time. Each time she seem to hit one of my veins, but it appeared not to want to play... Can't blame it to be honest! Hope your bladder issue improves. Have a good day. X
fiddlercrab
Member

Re: December 2016 Starters

It was 3rd time lucky for me on the cannulas this time. I am sporting two lovely bruises from the failed attempts. She thinks she hit a valve both time -could draw back blood but not flush the saline through, and had to get a different nurse in to do the successful one. 

 

My bladder is playing up again, really aching and feeling like I need a wee. Hoping I can just flush it through with lots of water and it's just irritation from the drugs and not an infection. This is all so crappy.

 

WMJ
Member

Re: December 2016 Starters

SALowery I feel for you, I too have had a similar experience on cycle 3. It took 5 attempts to get the cannula in so my arm is a patchwork quilt of bruises and a few are quite sore. They also decided to take my bloods as the cannula wasn't going in, so that was a 6th needle too. I am now deciding whether to have a port fitted or should I just ask for the nurse who managed to get 5th in. What I am finding interesting is that a few of us are having the same issue and so perhaps a common occurrence. Have to say my veins aren't the easiest to get to or get blood from but up until Thursday I had absolutely no problems. The next cycle and switching to a new treatment is going to be apprehensive enough, as it is like cycle 1 new symptoms and the fear of unknown again a bit like cycle 1. We will get through this and thank goodness we have each other for support and we are going through the same thing together..... As you can see another early start for me, OH's been playing football in bed & obviously though I was the ball... LOL However  he has been down and made me a cuppa.

Hugs XX

Running girl 53
Member

Re: December 2016 Starters

SALowery ask for a hickman line. My veins are playing up and i discussed it today and they are happy to put one in. One less stess. I know just how you feel as i've just gone through it myself. I was getting more stressed everytime. Speak to them and insist. Hope you feeling better soon. Xxx
Snail888
Member

Re: December 2016 Starters

You will get through this xxx water then bed and tomorrow is another day xx
SALowery
Member

Re: December 2016 Starters

No im a complete mess, yes Chemo today 3 try's and did finally go in but arm is so sore and already stressing about next time, I'm in tears and feel exhausted, thanks ladies but this really does suck... hoping 2mrws better xx
Snail888
Member

Re: December 2016 Starters

You OK salowerlry? Chemo today x
Running girl 53
Member

Re: December 2016 Starters

You ok SALowery?
SALowery
Member

Re: December 2016 Starters

THIS SUCKS!!!!!
Running girl 53
Member

Re: December 2016 Starters

I'm now home and had final fec! Think the name sums it up really! Cannula was successfull but i had to practically cook myself in layers of clothes to keep veins up. Anyway i am having a hickman line fitted before next time and chemo will now be on a friday. Halfway there now. Hope you all have a good weekend. Xx
Running girl 53
Member

Re: December 2016 Starters

Sorry to hear others have had similar vein problems. Stressed me out a bit. Slept well and as its such a beautiful day i decided to go for a run in this glorious winter sunshine. Definately lifted my spirits. Trying to find some positivity to help me get through today. Hopefully i can distract myself with thoughts of this mornings beautiful run.
Cookiepuss
Member

Re: December 2016 Starters

Morning everyone

 

Sorry to hear of the vein problem and hope you manage to get your FEC today RunningGirl.  I take a hot water bottle to the hospital and wear gloves to keep my hands warm which does help plump the veins up.

 

I had my third FEC yesterday - half way through chemo yay!  I was a bit worried they weren't going to do it as I have had a red mark above my wrist since the second cycle which they thought was phlebitis and prescribed some cream but that part has got worse and started to blister.  Anyway the chemo nurses were not happy to put it through that arm but the oncologist had told them he didn't want it going through my left arm (even though not had surgery yet) as he was hoping to put all the FEC through one arm.  After a consultation with him he agreed so I had in my left arm and they slowed it right down and put through 2 litres of fluid with it and all seems well.

 

However, they referred me to a dermatologist so I had to trek back to the hospital for a 7.30pm appointment whilst feeling crap and just wanting to sleep.  He thought that a very small amount of the chemo had leaked out of the vein during the second cycle so I've now got a prescription for some steroid cream which should help.

 

Went straight to bed as feeling rubbish.  I kept waking up every couple of hours and at 3am was wide awake and didn't get back to sleep.  However, I didn't have to take the additional anti-nausea tablet in the early hours as I did last time so I wonder if the extra fluids I had helped.  I also drank 1 1/2 litres before I even had chemo plus another half litre during the session on top of the saline.

 

I guess what I don't understand is once I have had surgery I can't have bloods taken from that side due to the risk of lymphodema; so therefore the veins in my right arm need to be preserved as much as possible so why don't they put it all through the arm that can't be used in future?  Will be on my questions list for next pre-chemo appointment.

 

Am administering the GSCF at home today (OH hopefully up to the job) and having done a few work emails am now going to take it easy.

 

Hope everyone else is doing as well as they can - at least the sun is shining where I am today.

JoJo45
Member

Re: December 2016 Starters

Hi ladies, sorry to hear a few of you are having vein troubles, like Andrea I have a PICC line fitted, mine was from the start due to a history of bad veins and cannulas so was planned.  It was a bit uncomfortable for the first week or so, had a little bleed around the pipe whilst it settled, but all fine now.  I wear a waterproof arm band for the shower but it's fine.  

I'm just coming out of the post chemo fuzz now, had no4 last Wednesday (first of the docetaxol T) different side effects on this, a lots less nausea but increased bone pain.  Wasn't nice for a few days, have spent three days in bed/ sofa in pjs.  

Hugs to you all 🤗🤗

JoJo45
Member

Re: December 2016 Starters

Just read some of the blog

What a lovely story to inspire us all xx 

WMJ
Member

Re: December 2016 Starters

Hi All,

I had cycle 3 yesterday and also had a nightmare with the cannula, the 5th attempt went in thank goodness. I also had my bloods taken in the usual way so that was 6 needles in that one arm. It is a lovely shade of blue blotches today. Hopefully it will go well for you today running girl 53, but not a nice experience at all. They spoke to me about having a port fitted. However no5 went in okay with a different person doing it and they were fine for the other 2 cycles. Historically it has been an issue for me so may well consider the port.

 

other than that I was exhausted after such a long day etc. Nausea started as soon as I got home, slept on and off throughout the night. Still feel a little nauseous but can't eat until later this afternoon due to fasting. 

 

Hope me everyone doing as well as possible.

take care xx

Running girl 53
Member

Re: December 2016 Starters

Thanks all. Comments duly noticed. Discussed pic line today and will make a request tomorrow. One of the things that freak me out about the chemo is the whole vein thing. I developed phlebitis after surgery due to vein being irritated by injected antibiotics. I probably didn't help myself today as being tense and stressed makes it worse as adrenaline makes the whole vein thing worse. Trying to relax but not easy. Shame i can't enjoy this last day of feeling normal i'm just too wound up for the chemo. Xx
Andreaj
Member

Re: December 2016 Starters

Running girl .. not fun having all that mucking about trying to get a cannula in, really hope they can sort it out for you tommorow with as little prodding as poss you poor lass bet you are black and blue

 

I had a pic line put in, it  was not fun and I had a week of discomfort with it after it going in not terrible just irritating and a bit sore.

 

I can see why people said it would be worthwhile now though..can I suggest that anyone who thinks it might be worth while looks into it even this far through chemo it might be well worth it.

 

 I know some places offer a picc line right away and other places seem reluctant.

 

I pushed for mine having read through the forums and it wasnt too difficult to convince them, I do have to return every week to have it cleaned and flushed and I cant have a bath or shower without carefully covering it but having such horrible veins I felt it would be preferable to all those horrible needles.

 

Snail888
Member

Re: December 2016 Starters

Oh no how annoying. Just too flat? I had shower and put heat pad and several long sleeve Base layers on my arm before I left because I felt a bit flat. Body builders tip for veins a couple of haribos or something sugary will puff them up. Good luck tomorrow x
SALowery
Member

Re: December 2016 Starters

Oh no, this is my dread too, keep strong 💪

Xx
Running girl 53
Member

Re: December 2016 Starters

Didn't expect to be up to posting today but 3rd Fec didn't go according to plan. After 5 attempts to cannulate (ouch) they had to admit defeat and i've got to go back tomorrow afternoon for another go. Dissapointing and after phsyching (?) myself up for today now feel in limbo. Oh well here's to a good night sleep and delayed onset of nausea.
Running girl 53
Member

Re: December 2016 Starters

Hi All
Just thought i'd share this blog link. I found it through an email from Run Britain. This amaizing lady ran 7 miles to her chemo session! Not something i could do at moment or that i suggest but inspirational. Found her blog very interesting and relevant. Might be worth a read peep's. Xx
Ps. She also published a book which i have ordered. Will let you all know if its worth a read.
https://jennybaker.org.uk/2015/07/28/one-more-mile/
Snail888
Member

Re: December 2016 Starters

Felt very sick at 1.30am took a tablet thought it was antisickness. Just realised it was dexamethasone!! No sleep here then. Coupled with dodgy baggy sounds downstairs in the house. Xx
Snail888
Member

Re: December 2016 Starters

Round 4 today. Seems sitting around eating cake is the solution to.dodgy liver results from 126 to 34 in 7 days. Not so.could for the fat belly I'm growing. But then gcsf injections don't hurt in the fat so every cloud. Feeling more.sick tonight than previous rounds. Felt nurse went a bit quicker with drugs and they were very cold.
Good luck everyone keep talking xx
SALowery
Member

Re: December 2016 Starters

Good luck all, I've got mine Friday so not looking forward to it but then half way there!!!!!

Sara xx
fiddlercrab
Member

Re: December 2016 Starters

Neutrophils at 1.81, so FEC3 went ahead. Not looking forward to the next week.

Agarside
Member

Re: December 2016 Starters

The ward has rung as I called about my cold...  Bloods still very good!!  Neutrophils.. 5 !

 

So still on for cycle 2 tomorrow.

 

Hope everyone is doing ok from cycles today...

 

Amanda

x

Agarside
Member

Re: December 2016 Starters

Cookiepuss, yes they need to take it out for full pathology.... 🙂

 

Now I have a cold... Arghhhhh have called hlepline, and they are happy for me to manage at home, but it could delay cycle 2...

 

A

xx

Cookiepuss
Member

Re: December 2016 Starters

Forgot to ask how the wig fitting went?  Did you find something you liked?

 

I've been in work this week so wearing mine pretty much all day and went out with some friends for a meal last night so it got a long outing yesterday.  I still find it a bit itchy for the first ten minutes but then it settles down and I do tend to forget I am wearing it although it is a relief at the end of a full day to swap it for one of my cozy caps.

 

 

Cookiepuss
Member

Re: December 2016 Starters

Hi Amanda

 

No I don't know the pathology of my tumours, other than it is Grade 3, HER2+/ER+PR+ which was determined from the biopsy. I  assume I won't know more until I have surgery?

WMJ
Member

Re: December 2016 Starters

Best of luck Fiddlercrab, got my fingers & toes crossed for you. I know what you mean about having some 'extra' time feeling good though.  X

Agarside
Member

Re: December 2016 Starters

Hi Cookiepus

 

If team were more cooperative with mamogrammes I would probably be more patient, but so far I feel I am being 'put off' iyswim.  The negligence lawyers are keen to take on my case and get them for me.  Also I want them looked at by an independent 'expert' as I know how NHS staff work - it is not in their interests to show you they were potentially at fault - do you know the pathology of your tumour, if you dont mind me asking? PM if you prefer.  

 

I have managed to get a cold, runny nose and sneezing - so hoping it doesnt get worse.  Bloods done this afternoon and then for a wig fitting - that was interesting!  

 

Amanda

xx

Cookiepuss
Member

Re: December 2016 Starters

Agarside - thanks for the summary; you should be able to get your previous mammogram images (or your oncologist should).  I asked for mine as I had the all clear in Feb 16 after my first mammogram so was convinced that they had missed something.  It took weeks for them to come through (not sure why) but when I went in to have the markers inserted the lovely radiographer showed me them then. 

 

She explained that normally two people view the images to avoid anything being missed.  As it happens mine just didn't show up - they did another mammogram after the markers were put in and I could see the shiny markers but still could not see the lumps and neither could the radiographer.  So in my case it was the fact that they could not be seen due to all the other tissue surrounding them.

 

SALowry - my treatment plan is chemo, surgery and then radiography but at this stage I don't know what they will recommend re the surgery or rads until they have reassed after the chemo.  Still a way to go but I am just breaking it down into the three areas and concentrating on one at a time.

 

Third FEC cycle on Thursday for me too.  I was sort of prepared for the second cycle although still nervous that I would be hit by different side effects.  As it happened the main side effects followed a similar pattern which were manageable with the drugs and I was pleased I kept a diary so I could look back.  However, the painful vein situation was not good and it is making me very nervous this time round that it will be even worse. 

 

I did ask about having a port fitted but they only do it under GA where I am having treatment and they said the earliest they could fit me in was the Saturday just gone but it was likely it wouldn't have healed enough to use the port by this coming Thursday.  So the plan is for me to take some strong painkillers before the chemo is administered, hot water bottle on my arm and also they are going to slow down the speed of putting it in to see if that helps.  They then said they will use the opposite arm for cycle 4 which is the start of the Docetaxol which will allow my right arm 6 weeks to recover from the FEC.  By all accounts it is the FEC which causes the veins to burn out and the Docetaxol is not quite as harsh on the veins.

 

Like others I am defiitely not looking forward to another set of side effects and the unknown!  I also believe it takes longer to do than the FEC but not sure whether that is the case. 

 

In the meantime I am trying to drink a minimum of 2 litres a day, particularly the day before and the days after although I am making an effort to drink 2 litres every day.

 

Anyway, starting to feel a bit more jittery but good luck to everyone having their next cycle this week and to those who have already had it, I hope you are feeling generally not too bad.

 

 

 

 

fiddlercrab
Member

Re: December 2016 Starters

Had my bloods this morning and neutrophils were only just over 1. Oncologist wants them to be over 1.5 by 2pm tomorrow or we'll have to postpone. He said that once they start to rise they do tend to go up quickly, so keeping my fingers crossed, sort of. Although another few days of feeling good would be nice too. I am also going to try and drink more to flush it all through faster.

 

Apprehension is right, not looking forward to this at all.

Running girl 53
Member

Re: December 2016 Starters

Hi all
Can sense the apprehension on here as we all approach next treatment. I actually wake up panicky these last few days as i know what is coming. Blood test tomorrow and chemo thursday. Going to try to drink more to hopefully flush out quicker and try to keep reminding myself that 5 days later i will be feeling better. I may go off the radar again as i do get quite depressed when i'm in the thick of it. Good luck all and keep well. Xx
WMJ
Member

Re: December 2016 Starters

Thanks Snail888. X