Sorry to hear you have been in hospital. It’s not much fun during chemo. I had a high temperature for nearly two weeks, tried antibiotics at home for 5 days then temperature spiked again. Then it was 6 nights in hospital and 3 different antibiotics, they never found out what caused the infection.
It is the best place for you, IV antibiotics work quicker and they can keep a close eye on you.
Take care when you do go home and keep a regular eye on your temperature (I know you already do). Phone your helpline if it spikes or you feel more unwell.
Thanks @naughty_boob i’ve just spoken to doctor and am going home tonight, just waiting for my husband to come pick me up.
I have to go to my oncology day unit on Friday to have my bloods checked again and then I have a follow up appointment on 1st May with my oncologist to hopefully find a way forward .
a little bummed today, been delayed cause HB and neutrophils are too low and I’m not feeling ill at all. I’m not sure what I can do boost the numbers and get back on track, any ideas?
Unfortunately, nothing you can do about the neutrophils, could take iron for the low haemoglobin, but unlikely to make masses of difference in a week.
Sorry xx just time I’m afraid x
2nd round of paclitaxel completed yesterday. Not a great nights sleep mainly due to the steroids that I had prior to the infusion.
Given the bone and muscle pain I had from round one , I have been given pain killers to take called, Gabapentin. Lets hope they do the trick…time will tell as it was day 3 following treatment that the pains started the last time. Watch this space !
Lovely spring day in Edinburgh today, sun is shining but cold, definitely a good day for a walk which always helps my mental health. Might even stretch to lunch out with my hubby while the going is good.
Hope everyone has a good day. X
@taniak I had a blood transfusion when my HB was below 80, but it helped only marginally. I have also been taking folic acid per my oncologist’s prescription but I understand that it works its magic slowly. I hope the delays don’t get too bad!
So, I had Paclitaxel no. 2 yesterday and was told that my iron levels now warrant an iron transfusion which takes an hour and that I am booked in for Monday. I’m told that within 2 weeks I will feel way better. To be honest, I’ve so far got away lightly and don’t feel bad so anything is a bonus.
@kitty77 I’m glad you got home. I always remember your description of yourself as Gollum. It still makes me laugh. I’ve pinched it, if I’m honest. Or I had done until I realised I was looking like Old Git.
@Vibby Sometimes we don’t know what will trigger us until it happens. My husband saw my roots of my remaining hair and unwittingly said “Ooh, aren’t your roots dark. They’re black!” (They are not black, by the way! They are just dark blonde but looked dark as I have always dyed my hair light ash blonde.) I was so upset because there was nothing I could do about it and I had already started to lose my hair. I went out for a walk and cried the whole way round. He felt terrible and really apologised for being insensitive. I told him that it made me realise that I was more upset about losing my hair than I had realised. We’ve been through a lot. All of us. Sometimes this will happen to us but I think a bloody good cry is cathartic. Sending you love and hugs.
@naughty_boob Once again I say, good call Breast Cancer Now, making you a Community Champion. Once again you show us just why.
@taniak That’s disappointing. Can you ask for an iron transfusion like I am having? Hope you are feeling cheerier soon. This bloody BC does give us down days and that’s a fact. I recommend cake. That’s if you can taste it. I still keep remembering that Paclitaxel has wrecked my taste buds and that eating foods for pleasure is a non-starter at present. Hope your taste buds are ok.
@shonas Snap! I get the minimal dose of steroids for the infusion and still couldn’t sleep. I started work this morning at 4:30am. Let’s compare our pains as I also got jabbing pains around Day 3. Nothing bad but definitely had them. Here’s hoping it was just a reaction to Paclitaxel 1 and won’t happen for Paclitaxel 2. Just the 10 to go. Love Edinburgh. Hope you stretched it to lunch.
@tinatin I still haven’t got the folic acid. Thanks for the reminder. How you doing?
Today is my weekly hair wash day. Oh my goodness…wish me luck!!!
@salbert I’m doing surprisingly well this week, I’m afraid to jinx it. Just some usual fatigue but not too bad. I went to the opera on Monday and it was fantastic. Mondays are now my theatre days (my weekly chemo is on Tuesdays), just trying to justify the exorbitant rent I pay in London haha
Taking it slow this week but hopefully I’ll manage to check out the Tate on the weekend. The weather this weekend should be pretty miserable but I want to leave the house so looking for excuses.
It looks like we were all awake at 4:30 today - I was awake too! After a few failed attempts to fall asleep I gave up and started reading A Gentleman in Moscow - so far so good! But I would rather have a good night sleep
thank you @tinatin, my HB is just above 80, my guess is at this rate, I’ll probably need a transfusion but I will definitely be asking for a folic acid prescription.
@salbert thank you! I will be asking about an iron transfusion as well, anything to help get the numbers up. luckily my tastebuds are still alive, haven’t started on paclitaxel yet cause of all the delays. Good Luck with the weekly wash, there’s not too much shedding.
I’m feeling so down today. I called the triage line about diarrhoea and they sent me to A&E. Just had the bloods back and the oncologist doesn’t like how my kidney and liver are looking so I’m in here at least for the night. I burst into tears when the doctor told me I couldn’t go home. I’ve been feeling rotten all week and I was really looking forward to a relaxing weekend at home. To top it off, the nurse who did my cannula put it in a really bad place and it’s super uncomfortable…
Hang in there @kartoffel sending good vibes your way! Hopefully the bloods will improve soon. Is there something nice that you can read or watch to take your thoughts away from the situation? I usually end up rewatching Bridgeton…
These cannulas, sometimes they are so evil! I feel your pain.
@salbert Any day 3 pains ? I certainly noticed them coming on last night, however the pain killers prescribed have reduced them to a dull ache rather than the shooting pains I had the last time, so will take that as a small win. A bit dull in Edinburgh today but did manage lunch out with my hubby on Friday, which was lovely. @kartoffel I hope you are feeling a bit better , sending positive vibes to you and of course all going through this storm. X
Darling @kartoffel I’m so sorry that it’s hit you hard. I’m sending you some very strong cosmic get well vibes. BY THE POWER OF POTATOES, MAKE KARTOFFEL WELL AGAIN! I hope you can feel my hug from here. I hate it when any of you guys are sick. I feel you are my tribe and I want to put my arms around you.
I didn’t lose much more hair on Friday’s weekly hair wash event and I have a fine growth of leg stubble! I will wait and watch with interest. I also purchased a pink and lilac wig this morning on eBay without giving it a second thought. If you can’t do it now, then when can you?
@tinatin What opera did you go and see? I would go to the theatre/opera every week if it were possible. If you are in London and you can, then you absolutely should! My Dad is an opera fanatic and after subjecting Mum to it for decades (including his own drunken Pavarotti renditions) she dug in her heels so he started taking me instead. We used to sneak our own alcohol in as the price of drinks was so exorbitant. I do remember him getting so busted when the top came off the bottle and he trailed a line of red wine along the carpet of the Royal Opera House. I shouted ‘Dad! Your bag!’ then abruptly hid so I wouldn’t be associated with him.
@taniak I really now cannot taste a thing. Yesterday I went to a lovely cafe and ordered jackfruit loaded cheesy chips and toffee and apple cake. Couldn’t taste it at all. Gutted! Those chips looked absolutely beautiful. Nothing. Nada. OH FLAVOUR… HOW I MISS YOU.
@shonas So far so good. No pains (apart from the colossal ball ache of having the pleasure of food taken away along with everything else this bloody disease brings with it), but on the whole, I cannot complain. I even managed a rum and lemonade on Friday night. I just couldn’t go to sleep so I got up, treated myself to my first alcoholic drink this month (and I never thought I’d hear myself say THAT on the 26th!) and listened to a sleep story read by Jerome Flynn who sent me right off. But then I never was a fan!
@salbert I saw Lucia di Lammemoor which was absolutely fantastic, a revival not to be missed. I’m checking last minute tickets almost every week, if not now, when shall I go then? However I’m not making any long term plans, just live from one week to the next, which isn’t really the way to navigate West End!
That was a long day and change. I’ve managed to escape now but I am thoroughly sick of being poked and prodded. Thanks to everyone for the well wishes and virtual hugs. You guys are all so sweet and it made me tear up again because I can no longer regulate my emotions apparently… haha.
Just a word of advice, if you start having diarrhoea - keep track of the number of times you go in a 24 hour period. I called my triage line and said “about 10” which was the magic number for me to be sent straight to A&E. I got pumped full of fluids, multiple blood tests and monitored for the next day. My liver and kidney numbers are still too high, but my oncologist isn’t concerned. @kitty77 I think you also had similar when you were in hospital recently, did they ever figure out what the issue was??
@tinatin an evening out at the theatre sounds like a dream. I used to love going in to London to see all sorts of theatre but haven’t been since I started treatment because I’m paranoid. Do you mask up when you go?
@salbert I am so missing flavour as well. Hospital food is even more dire when you only get the texture and not the flavour of things. I could almost taste the store brand doritos I picked up on the way out of the hospital yesterday, so that gives me hope that maybe something is coming back?
Hi @kartoffel good to hear you are home, hope you’re feeling better?
Your hospital experience does sound very similar to mine except it was my heart rate that was high rather than me having diarrhoea although I’d had some bad stomach pains.
Same as you, I had six rounds of antibiotics as my initial bloods when I was admitted showed my white blood cells and neutrophils were too high!!
They treat this as my body trying to fight some sort of infection so straight onto antibiotics then they also said my liver function test was way too high so sent me for chest X-ray, and ultrasounds of my liver, spleen and gall bladder - all were ok so they then did more bloods to check for blood clot and that came back fine too???
Sent me home the next day after more blood tests and urine test, liver levels still very high but my blood counts were fine,
I went to my oncology day unit on Friday for liver function blood tests to check they were coming down and I’ve not heard back from them so assuming they must be?
The doctor on the ward I was admitted to said they thought the high liver level was a reaction to the chemo so not really a definitive explanation! I am seeing my oncologist this Wednesday so might get more info then .
@kitty77 chemo really does a number on our bodies, doesn’t it? I guess most people don’t have multiple blood tests in between chemo cycles, so they don’t really know what goes on when we have a session but it’s scary when they talk about liver or kidney function being compromised. My WBC and neutrophils were also through the roof so it must have been some sort of infection. I haven’t even gone anywhere besides the hospital in the past month (and once to the grocery store) so it seems a little unfair to manage to pick up an infection from that. Are you feeling better now? I felt absolutely fine aside from the obvious stomach cramps/poo issues but it is nice to be home and have been able to sleep in my own bed last night. I’m supposed to have a call from my oncologist today and I’ve got a blood test booked in for this coming Friday so I guess we’ll see if everything is back to normal-ish.
I’m the same @kartoffel not been out the house except to walk the dog and go to my hospital appointments !!
I feel okay just tired still but I’ve not slept great since I got out of hospital, I’m awake for 2-3 hours every night so I think that is catching up on me.
I feel a bit down too which isn’t like me I’m normally quite positive but have felt teary these last few days and I have a face full of spots which again I’ve never really suffer from!! Think I’m just a bit run down, tired and feeling sorry for myself.
Hopefully I’ll bounce back in a day or so .
I’m interested to see what oncologist has to say - right now I don’t feel up to another chemo session next week physically or mentally but I’m hoping that will change soon too.
Take care and let us know how you get on with your next bloods and your call with oncologist.
@kitty77 Maybe you need to get something prescribed to help with the sleep? I know that for me, everything seems to spiral if I can’t get enough sleep. It’s not going to solve anything on its own, but a good nights sleep will help in the right direction.
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Love Edinburgh. Hope you stretched it to lunch.
but I will definitely be asking for a folic acid prescription.
luckily my tastebuds are still alive, haven’t started on paclitaxel yet cause of all the delays. Good Luck with the weekly wash, 
there’s not too much shedding.
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