My husband asked me who Elle is yesterday as, apparently, when my neutrophils came back, I deliriously told the doctors to contact Elle as her symptoms were identical to mine and she needed to be careful and get checked if she was feeling unwell still.
I was so worried that you’d follow the same trajectory and it confirms how messed up Docetaxel is that you and I had identical symptoms (apart from the diarrhoea) and yet you were fine and I was neutropenic. It’s bonkers how fine the line is! X
@swk1981 OMG here I am complaining about headaches and you are going through all this. I really hope that you start to turn a corner soon. It sounds like they are now looking after you better and thank goodness you are in a private room so no cross infection. I can only imagine how scared you must have felt. Sending you so many get better soon hugs. I’m off for my last EC today, happy that I’m half way through but dreading it at the same time! However as I said before I’m not complaining especially when I’ve read your post. Helen xx
Morning @pollyanna1 i hope today is a better day and that all the new drugs are starting to work. Sending healing hugs Helen x
What a terrible time you’ve had @swk1981. It most have been very traumatic and frightening for you.
I don’t know if you remember the time the drs realised I had the breast abscess after my first chemo. There was a lot I didn’t say as I didn’t want to frighten anyone in here.
I had the worse experience ever between been told to sit in my car for 5 hours with a temperature of 35.2 in minus 2 degrees outside and then putting me in a store room with a bed to keep me away with from people. When they eventually got me onto a ward within a few hours they told me a patient had Covid. Infection control was a disaster were as the nurse dropped the dressing on the floor and went to pick it up to use it.
I left the hospital a total mess at the time physically and emotionally. I had never felt so vulnerable and frightened in my life. Drs were arguing with each other what was best to do. When my surgeon came to see me the next day he went mad at what had happened and actually apologised to me and said the care was appalling and tried to reassure me this would never happen again.
The reason im telling you this is I totally get how you’re feeling, when I had been feeling so unwell last weekend and wouldn’t phone hospital because of my previous experience incase they sent me to A&E this was why I was thinking I’m not doing my last chemo as I can’t cope anymore, I couldn’t stop crying and thought I was having a mental breakdown and a lot of it I can’t even remember.
Today I’m feeling so much better again as I’m on better anti sickness and I’ve no more diarrhoea. I’m on tablets for nerve pain which is helping. I’m on 2mg of diazepam 3 times a day also. Please please going forward contact your team if any changes and don’t wait as there is stuff they can give to help. I learnt the hard way. Also any mistakes any staff make complain right away. I know this sounds horrible to some people as I’m the person who would never complain to anyone and I understand the pressures they’re under, my daughter is a nurse and her husband a paramedic and they both reiterate constantly it’s is not my fault the NHS is under staffed and pressure,.
This week I had a totally different experience when in hospital were hospital was bursting at the seems yet the staff were amazing and so professional. Please be an advocate for your own health as it’s sad the times we are now in with the health service.
Please don’t think I’m having ago about the NHS as I respect them immensely but truth be told it’s in its knees.
Sorry this message is so long, please please hang in there, you will get through this as you’ve been so strong all along and have given wonderful support and advice to everyone me included. I know you’re probably feeling really vulnerable and deflated at the minute but remember you’re ill and your body is low but this will pass and your strength will come back
Sending you massive massive hugs 
Feeling so much better today as I’ve just posted to @swk1981 i couldn’t have done any of this without the people on this forum. I hope illl be able to help back when needed as we’re all on this journey together. Good luck with your last EC another milestone to tick off. I’ve my last chemo on the 12th of June. I’m for the hospital today for radiotherapy planning and as crazy as it sounds I’m in really high spirits as feel I’m on the home straight lol. This chemo is definitely a journey of ups and downs for us all but what amazing people we’ve met along the way xxxx
@swk1981 i just can’t get my head round what you’ve been through over the last couple of days, thank you so much for sharing it with us as it could save one of us one day, just to let you know I’ve started to turn a corner, I feel awful but can tell I’m improving and not getting worse, I also went to the doctors yesterday and saw the practice nurse who prescribed nystatin for my mouth and fluconazole tablets as it’s spread into my throat, so I should be on the mend real quick.
Thank you for thinking of me 
I can’t imagine how you must be feeling right now but isolation is good, no more germs coming your way and hopefully your body will soon start to recover, get all the rest you can, sending you so much love
@pollyanna1 @swk1981 the experience you’ve both had at the hospital when at your most vulnerable is heartbreaking, I can not begin to imagine how scary it must of been for you both, let’s hope the brighter days are ahead , keep remembering the end is in sight . All my love xx
That sounds absolutely terrifying @swk1981. It’s scary how quickly things can go wrong when we’re in an immunocompromised state. I had a trip to A&E after my first docetaxel and until I mentioned that I had been in a few weeks prior with a dx of neutropenic sepsis, they let me sit in the triage area where everyone was walking by with diagnoses of viruses and all sorts of nasty contagious things which made my BP and anxiety shoot through the roof. Hopefully you’ll be on the mend quickly so you can get out - my neutrophils started bouncing back quite quickly once they pumped me full of antibiotics and gave me some extra filigrastim shots.
So pleased you got Nystatin. My cultures are not showing anything GI so it’s looking like my mouth may have been what tipped me over the edge. I was so used to mouth hell with EC and expected it with Docetaxel and I never realised just how dangerous, the slightest fungus or bacteria would be.
The BEST pain reliever and mouth wash they’ve given me here is GELCLAIR which is available normally so worth looking at. It relieves all pain and helps you eat and drink.
@pollyanna1 so pleased your diarrhoea has stopped now. And thank you for your message. I know we’re all reticent to NHS bash but it can stop us speaking up when someone awful comes along. The oncology nurses here said I got put in the worst section with the worst care and they wouldn’t want to be there well, let alone as a chemo patient. How you describe is exactly how I felt. Just so vulnerable and it made me feel like I was going to die and when the nurse said “I know you need a side room to be safe but the government doesn’t give us enough money!”, I was terrified and felt like I was in a third world country where we genuinely couldn’t keep anyone immuno-compromised safe. I hope your radiotherapy planning goes well today. It should be a positive. It’s heading to the end! And what a bloody journey it’s been.
I used to get cross on here when I saw people saying “I can’t do this anymore!” , thinking “What? Of course you can! Look at your kids!”. Last night, I got it. I couldn’t take it anymore and it felt so shameful to feel like that but I genuinely wouldn’t have cared if someone just stuck some morphine in me and let me go. I don’t feel like that this morning as the pain is lessened but temp is still stupidly high which is just scary.
@kartoffel thanks for your message. I’m surprised they haven’t given me extra G-CSF at all. I’m on a slow release injection on my cycles so I wonder if it’s because that will still be working anyway. It astounding isn’t it how little the A&E areas are set up for anyone immunocompromised. Apparently Bristol Royal Infirmary has a separate section for suspected neutropenia so I’ll be going there instead of Bath next time! I won’t come near Bath RUH ever again after this, although as soon as I’ve been over at the Dyson Cancer Centre, they’ve been amazing. I just won’t touch the A&E! X
So sorry to hear how ill you have been @swk1981 - it sounds really traumatic and I so hope you’re through the worst now. The Norfolk & Norwich hospital is overstretched but I’m so glad that they have a separate emergency triage system at the cancer unit and I won’t have to through A&E if I become ill. They have two dedicated wards to admit cancer patients to - one specifically for those with neutropenia sepsis and the other for any other chemo related sickness. It’s crazy how much it differs across the country - especially as this is a NATIONAL health service and the care should be the same for all of us. Sending you so much love, Emma
@hc1973 Best of luck for your last EC today! That’s a big deal! Lots of us found it very different to the other cycles. Easier in a lot of ways but definitely didn’t get the energy back as easily so take it super easy.
As women, we stupidly measure ourselves on our productivity. Instead, I think we could do with measuring ourselves on our neutrophils and how much we’ve slept! We’re our own worst enemies!
You’ve got this last cycle and then you’re on the home straight!!! X
So glad to hear you’re starting to feel slightly better. When we feel so ill it really gets you down and you think we can’t carry on. if anything I can reassure you with is when you start to feel well again the positivity and strength to carry on does come back. I think everyone on here are super humans, we’ve got this 
Look how quickly things changed from my meltdown last weekend. I honestly can’t remember half of it felt like I was having an out of body experience.
My Mother-in-law is very religious and was at chapel saying the rosary for me 
as my husband had told her how bad I was feeling , I’m cringing as God only knows what she’s told people and I’m a very private person 
but maybe I need to realise family are there for me and I need to reach out.
My daughters tell me I’m either like a nodding dog or like Agnes Brown from Mrs Browns boys saying “that’s fine” or “ I’m grand” hope this maybe gives you a bit of a giggle
Oh gosh I don’t know what to say after catching up on the messages. @swk1981 and @pollyanna1 what a ride, keep going ladies you’re being so brave!
My hospital only has option of A&E if have bad chemo side effects, where I’ve been twice. Each time I was sent home after various tests that it’s nothing other than expected side effects. It doesn’t feel right to be in A&E amongst the serious road accidents, and last time there was a drug user who was making a scene for hours right next to where I’d been put to wait, with lots of staff trying to calm her. I was worried about all the people nearby and potential germs but nothing I could do about it.
It makes me nervous to even ring the hotline as the answer is either ‘it’s nothing’ or ‘go to A&E’. I envy those that have a better option so I could get checked over even when I’m not sure if it’s anything to worry about or not.
Another Docetaxel weird side effect. I was exhausted days 5-9 and barely left bed, then improved and was doing more. Happily thinking I would continue improving. Now days 13-14 I’ve been mostly in bed again exhausted. It has hit me mentally as it seems so unfair to be knocked backwards. I know it’s nothing compared with what’s going on with others, but it is sooo cr*p.
Fluconzole is also good for clearing up mouth thrush that is tablet form and lots of us had that during chemo to sort out the oral thrush chemo can cause 
we got you and everyone is holing on tight to you virtually sending hugs 
Shi xx
@swk1981 I’m going to order GELCLAIR now, the mouth pain is a whole new level for me compared to EC , but I do think I’ve got a slight improvement, the only positive is that I’m now not constantly finding something to eat as nothing tastes good, and I’ve got to stick to soft foods , I’m making myself eat three meals a day to keep my strength up but the lack of taste is frustrating.
How are you feeling? Really? Have you managed to face time your dad, kids, or is that beyond possible right now?
I bet Matt and the children are making you proud, we think they can’t do anything without us but then they just step up because it’s actually us mommas that put the pressure on ourselves to be superhuman when sometimes we need to just let them do things their own way, it’s not our way but who cares, as long as they have full bellies and a warm bed everything else can wait, having mom fit and well with a future with them is all that matters. You’ve got this, rest , rest and more rest, this week will soon be in the past and a memory of how strong you are
So sorry to hear about how you’ve been and glad they’re getting it under control! I really hope you get better soon!! I had a bit of a moan a while back about hospitals too so don’t feel bad or like you’re NHS bashing…. They’re doing their best but I went into A&E when my neutrophils were at 0.45 and had to sit and wait for 4 hours before they even considered taking a blood test and I know how it felt to be surrounded by sick people knowing that my neutrophils were already super low:grimacing: it’s scary when you’re already stressed and feeling ill! Have had long waits and not great experiences the 3 times I’ve been in. I think part of the problem is if you’re not going through medical professionals with oncology experience then they don’t seem to understand the risk of sepsis or urgency behind treating infections quickly! I’m now not shy about highlighting the risks (politely)
In general though neutropenic sepsis can be with the EC or Docetaxel (or whatever other chemo drugs people are on) and I defo agree that we need to phone the helpline with side effects/issues as they notice trends and things that aren’t quite right better than us and have that experience and it might be an infection rather than side effect. I’m past caring about bothering them as phoning them could literally save our lives and I’m not willing to gamble with my life!
Im already super careful/antisocial the now and take my temp regularly as my neutrophils have never bounced back since my first round of EC and are constantly just over 1 by the time it comes for my next chemo so I know any infection needs to be nipped in the bud asap and I’m constantly worried about it. Just heard today that they’re at 0.97 for tomorrows chemo so had to go into hospital for more bloods in the hope that they’re over 1 for it to go ahead tomorrow 
have you all been given a rapid response card? You should have been. What happened at trust I was at you called that and they got you into the oncology bit and from there onto a ward. If you did end up in a&E at all out of hours we were told to show that card as antibiotics should be administered within the hour. Worth mentioning to your teams if you don’t have a rapid response card. Shi xx
Back home from last ever EC whoop whoop! 9 sessions of Abraxane next starts on the 20th June. Thanks @pollyanna1 and @swk1981 for your lovely messages. Now in bed on a steroid, high balancing my insulin and sugars wondering which weird and wonderful item of shopping I never realised that i needed will be purchased in the night!!
@pollyanna I hope the drugs are starting to help with the pain for the neuralgia.
@swk1981 fingers crossed you have a better night sleep and your neutrophils start climbing soon. I read your message several times that you sent and you are so right! I’m such a hyperactive person usually and I think sometimes a lot of us are just in denial with the whole situation and it takes your story to put things into perspective and think oh actually I can’t just say I’m fine and soldier on.
I will be taking my temp more regularly and maybe being a bit kinder to myself.
Big hugs to everyone else, I have the usual fuzzy head and wish I could remember everyone’s names! I almost need a reply all button, I hate to think I’ve missed people out!
Helen x
Congratulations @hc1973 to finishing EC, 
what a massive moment for you. Hope the side effects are kind to you 
🩷
Happy online shopping 
x
Hello! I hope this message finds you well in our current circumstances!! I hope you don’t mind me messaging. I start my chemo next Thursday - 12 weeks of paciltaxel weekly and phesgo. I would like to try the cold cap and the hospital has said they have a paxman cap available. Aside from the paracetamol- is there anything else I can do to prepare. Don’t worry if you don’t feel well enough to message back!!! O’ new to the forum and just figuring it out! Thank you and wishing you well xx