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
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
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.
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.
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.
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 🤗🤗
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 .. 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.
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...
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...
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.
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?
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
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!
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.
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.