Aw Georgie - sounds like you’ve got same rotten luck as me. I was admitted to hospital on sat evening after initiallly been sent home on Friday. Turns out it wasn’t neutropenia. I had blood clots on my lungs & pleurisy. Lots of antibiotics, blood thinning injections for next 6 months & a shedload of painkillers. The suspected infection in my central line may not be as serious though but will know for sure on Friday when blood cultures come back.
Love & hugs from one unhappy bunny to another.
Thank you all for your get well wishes xx
I am so sorry to hear your new's not having much luck at all Thing's can only get better keep your chin up.
lot's of love and hug's
i have found that over the last few day's i have felt the chill and like you it is in the evening. i sat with a water bottle last night bought a little comfort. Make's me wonder what we will be like in the winter. I had my 3rd cycle oe fec today so looking forward to a couple of sleepless night's.
The doctors came to my bedside with aprons on yesterday and told me that the mystery blood causing the query, has tested positive for MRSA.
This is of course means that for the moment at least, I need to settle in and call my isolation room home.
I was really tearful yesterday but coming coming to terms with it today. The antibiotics for the sepsis were not covering the MRSA, hence the extra one, which is pumped in IV by the nurses once a day, like some of the chemo drugs are. They think it may be in my mouth / throat / downwards.... may have some tests.
Georgie Gee is not a happy bunny 😷
Georgie and Jacqs -sorry to hear you are not so good at the moment. Sending you best wishes. x
Is anyone currently suffering from feeling the cold, especially in the evening?
i just can’t seem to get warm. My temperature is good and I feel ok, just cold!
My thoughts are the same.... I certainly don't think I will be starting it on 5th of October, or herceptin on 4th. I need a break before I start anything else.
Hello from hospital, night 3 😐
And thank you all for kind words and wishes.
I'm in a quiet ward, which is a nice little extra, but no nearer to the exit route.
Still having IV antibiotics for sepsis, but today was hunted down by the blood labs, as I have something 'unusual' 🙄 (trust me!!) growing in my blood from Friday night.
So had another load of bloods taken today, and I'm sure the junior doctor was young enough to be still wearing his school trousers..... he asked ME what I thought my swollen mouth and tongue would benefit from. I actually cannot open my mouth wide enough to say the obligatory 'aaaah'. I said, 'well hopefully something to soothe the swelling and pain'. He actually suggested Vaseline 😳. I mean 😳😳😳!!
My neutrophils have risen, but they have added another IV antibiotic to the mix now, and are saying this may need to be given for another 10 - 12 days, depending on the result of the wierd blood tests. So it's mouthwash, earplugs, sleep hat drawn downward to shut out the hospital lights (good tip, that one.....😜) and hopefully some answers in the morning.
Night night, and don't forget to put your Vaseline on your sore mouths......😬
Georgie Gee x
Hi Georgie. I was admitted last night & am being treated for neutropenia sepsis & pleurisy. Can I ask how long it takes for symptoms to ease. Like you it isn’t best place to be - it’s chaotic & so noisy even in middle of the night. I’m from September thread - hope you don’t mind the questions & hope you’re starting to feel little better. Jacqs xx
I'm back in casa NHS.
Neutropenic sepsis has returned. Neutrophils score is 0.3. Just posted more on June thread..... so sick of this and am on a ward of 6 old ladies who shout.....
not appy 😢
Hi Lovely Ladies,
Georgie – sorry to hear you’re having a rough time – hang in there!
Purplebarb – welcome to the August monthly thread – it is !definitely a great place for sharing and caring!
I’m having my third (and final) FEC cycle tomorrow so if my last two cycles are anything to go by I am in for a grim week….I will expect the worse and hope for the best!
Take care everyone
I will be interested to see how you get on with your T cycle. Glad your side effects are better this time generally. The sooner all of this is over the better. Have you seen my posts on the polybalm cream?
I cant wait for all of this to be over.
sorry to hear about your A&E trip and i hope you are feeling a lot better now, chin up love is all around you. xx
Well it was a second time for me at A & E yesterday night.
temp climbing all day and eventually went in at 10.30pm (kept hoping it would settle)....... you know what it's like.
Got home at 2.30 after arm full of blood tests, antibiotics and fluids. Neutrophils ok but they did find a wee infection so have giant antibiotics to take.
Exhausted but safe.
Yeah unfortunately you can't have it done during chemotherapy. A lovely lady squeezed me in to her busy schedule when I told her about the time pressure, she had also been treated for breast cancer recently so completely understood.....and she also gives a discount to her clients with cancer.
Let me know how you get on with LGFB, I'm sure you will enjoy it and they will show you how to do your eyebrows :-)
Take care, Cat x
Great that you have had your final EC and good luck with the SEs - I hope they are kind to you. Thanks for the info on Polybalm, I think I may give it a go too.
I went to a Look Good Feel Better session on Wednesday. The nearest one to me was about 45 mins away but well worth the travel. They go through a step by step process of removing and applying makeup, including eyebrows which I think make a huge difference to framing the face (I cheated and had microblading before I started chemo!). Plus you get a great goody bag of skincare and make up products - what's not to love!
Take care everyone!
had my final FEC today - glad it's over! Now for the joys of S E's 😫..........
I asked the nurses about the black nail varnish use with ppolybalm, since the hospital I go to took part in the trial. They said that as long as you start using polybalm straight away on starting T part of chemo, it should work well, applied 3 times a day, without using black varnish. One reason for this is that the varnish removers, which would presumably dry the nail out, would spoil the benefits of buying the polybalm, as over the 9 or 12 weeks on T, you would be bound to need to remove it from time to time?
However, I am also aware of so many people saying about black nail varnish being brilliant..... without a mention of polybalm, possibly because the study and sale of it are quite recent.
I have included a link that I looked at. Hope it helps.... after reading a great deal about the polybalm trial, I am going to give it a go. Even though it is £39 for two tubes (one for feet and one for hands to avoid cross infection), and should last the whole course, I figured that the nail varnish and remover over that period would possibly cost similar for 20 nails for 9 or 12 weeks.....
I am going to post the info about this onto other recent monthly threads, to see whether anyone else has tried either method, especially polybalm, and I will report back. 😊
here's the link.
Hi Lovely Ladies,
Georgie – so so pleased to hear about your new oncologist – what a difference! Thanks for the advice about polybalm, will be interested to hear about wearing dark nail varnish whilst using it. I shaved my hair very short, it is still patchy but I am sure more will fall out. I have kept some of my eyelashes and eyebrows so wondering when I will lose them…
Jude – I haven’t been asked to go for another heart test ahead of Herceptin/T but I did have a test prior to staring FEC. Seeing my Oncologist on Monday so will add it to my list of questions! Glad your nausea is improving, I hope my 3rd FEC cycle isn’t as bad as the first 2 either!
LaLa – hope you’re starting to feel better very soon.
Multitasker & Jo – sorry to hear you have been feeling low, I hope you start to perk up soon....I think it’s normal to have ups and downs so I think lets go with it and not beat ourselves up! :-)
Take care lovely ladies,
I just wanted to correct myself when I said about black nail varnish........ I am going to check with the chemo nurses tomorrow that nail varnish can be used alongside Polybalm treatment.
G G xx
I have just looked up Polybalm. It is quite expensive at £39.50 for a pack of 2 tubes, but that is deliberate, as they recommend one for your hands and the other for your feet to avoid cross infection.
I am am going to buy some, as I don't think I would be able to cope with nails going funny as well as so much of the rest of me! The black nail varnish is also recommended by my oncologist too.
Thanks ladies for advice....
Judy, sorry you're still having the nausea. It's so horrid isn't it 😩.
Thanks for the info on the heart scan. I think I'm having one too now.
I saw my NEW oncologist today, and have to say it was like seeing an actual oncologist for the very first time!!
She listened, asked me about S E's, showed me what nails can get like on T by googling it with me!! And changed some of my drugs for last FEC tomorrow, plus so much more!
Asked me about when the bone protection IV had started, and was shocked that I hadn't had any yet!
Asked about 'when' I was having my ECG for starting T, and again was really surprised I hadn't had one, and filled in a request form for one straight away.
I hadn't signed consent for T or herceptin either, or had info sheets, so again she was very surprised, and we did it all today.
So very very pleased with this oncologist. She also said that there had been a trial on a nail cream called polybalm, and recommended it for T. Said it is available online.
I feel I may have turned a corner now, and that I have expert help from an oncologist who wants to be one!!
So tomorrow's chemo looms, but I feel more secure now.
Lots of hugs everyone
8 day's since cycle 2 feeling pretty much yuk. Bad night with heartburn and now my mouth is sore but no ulcers also a slight sore throat.
love to you all keep your chin's up, tomorrow WILL be a better day
I have just had my third and final FEC and as you have said Georgie that red stuff makes me feel sick, even just thinking about it.
I am also feeling really down the last few days. I completely lost it in the chemo unit yesterday, heaving, feeling sick, and in floods of tears. Just felt like I couldn’t continue with it. I don’t know why but even though I am half way, mid Nov seems along way away and I suppose radiotherapy for 4 weeks after that.....I totally agree with your comment about staying positive! It is really hard work staying positive all the time. I try to for my kids(16 and 13) but sometimes I think it is good to have a damm good cry!,
Multitasker- I didn’t cold cap but still have hair, very patchy but like you I shaved it to a 4. It’s too patchy and fine to go without my trusted wig but I am putting it down to the fact I had quite a thick head of hair in the first place. I think whilst a lot do completely loss hair some do keep small amounts. However, I am sure more will fall out before I am finished.
Take care everyone.
Hope chemo goes OK today Caroline. My third EC is due on Friday, I coldcapped for the last 2 but I would say 75% of my hair has fallen out. May still go ahead witht the cold cap. Its definitely helped bc where it didnt fit right the first time (newby mistakes) it has fallen out completely.
Quick ‘heads up’, AVEENO is a third off at waitrose at the moment. Bought several tubes to stock up.
Georgie, I hope everything goes well with the new oncolgist. Your Picc line seems really troublesome but hopefully it will start getting better with different dressings? It sounds such a lot to deal with as well as just surviving the chemo treatment. Lots of hugs.
I’m feeling really f**king miserable with myself today. Woke up early and cant stop thinking about chemo on friday (3rd out of 4 EC, with 4 more taxotere to follow) The treatment just looks never ending. Just the thought of going to the hospital to have that toxic **bleep** pumped in my veins and feel so crap for (albeit only) 4 days and then slowly build up strength to do ot all over again just seems like the most miserable version of groundhog day.
Generally I have been coping so well, seeing friends and family, getting on with life, expert at sick humour jokes, supporting others at a couple of groups. Not sure what has set me off today.
Sorry for the moan, I will have strong words with myself......but if anyone I bump into today says ‘keep positive’ I might just explode! Or maybe it would be kinder to just point them towards Rachel Blands blog, as she says some pertinent words about that throw away comment!😀
Thought I would give an update on my various issues..... 🙄 Trust me to get them!
I went for my pre chemo check up and bloods today, and all is apparently good for Thursday. Whenever I think of the drugs (particularly the red stuff going in (part of FEC) I feel sick. But this will hopefully be my last ever FEC, so onwards I must go, as we all must!
Picc line dressing was also changed today, and the nurse saw how sore I was where the plastic dug into the inside of my elbow, and it was also decided that (as I had thought....) I am allergic to the dressings, and that liquidy square bit around the line actually going in to the vein. So no wonder I've been in a mess with that arm.... sigh.....
as ever, I still blame the first oncologist for not listening to me about a port being by far the better option for me, as I had told her abut all of this in my first appointment. I have the new dressing on today, but where the liquid bit was, I am now very itchy 😩........ so desperately hoping I'm not in trouble with this one too!
I get to meet my replacement oncologist on Wednesday, as I successfully got a transfer. I see from another thread that others too have had to swap to a Dr who actually listens and doesn't mind answering questions!!!
I am told by the head breast care nurse that the 2 lady oncologists are friends outside work, so I hope this isn't going to be awkward. The one I had before was new, and very defensive when I took a breast care nurse in with me last time. I think she must have had the same kind of issue before. Wouldn't surprise me. There are so many things I want to ask my new one, who is apparently lovely.
Has anyone else still got a bit of hair in patches after 2 FEC rounds? I didn't shave mine, but my daughter took it down to a number 4 very short cut with clippers. Because of skin allergies I was scared to shave it, so now I have a very much thinned out covering of white hair left, with some bald areas and then little patches of hair. Like others I have worried that perhaps the treatment isn't working any more..... I expect it is, but sometimes I wonder.
Another question; does anyone know whether we get any scans part way through chemo, to see whether there are any changes? If I were an NHS boss, I think I would say we should. Just for reassurance, but also to catch anything early which might be lurking (my tumour was grade 3 invasive and already in lymph nodes).
All the best to others in the chemo boat with me this week. Judy I so hope your nausea subsides. It's so horrid feeling like that for days isn't it... 🤢
Lots of love to you all. It's so great to have one another isn't it.
Georgie Gee xxxxxxxxx
Hi Lovely Ladies,
I haven’t been on line for a while…..day 11 of my 2nd FEC cycle and just starting to feel close to normal (whatever that is nowadays!) SEs were similar to last cycle, the horrible nausea subsided very slightly earlier but the tiredness definitely worse.
It’s been great catching up on all your posts.
Georgie and Judy – I will also have Herceptin when I start T so interested in discussions on this point. I’m slightly behind the 2 of you, if all goes to plan I will have my 3rd cycle of FEC on 21st Sept and 1st cycle (of 9) of T on 12th Oct.
Georgie – I hope you got your PCC line sorted.
Caroline – welcome to the group!
Wishing everyone a great week, whether you’re having chemo, managing SEs or enjoying some good days!
God luck with number 3. Hope bloods are good to go!
Do you go onto T after this ?
I will be. Not sure how I feel about it as it seems to be the worst one. Only things I have read on dreading google mind you! One of my friends had T and didn’t really notice much difference, so I suppose it willl hit us all differently.