Debbie, that all sounds pretty dreadful. I didn’t get mouthwash until my recent stay in hospital (don’t need it really because mouth SEs have been mild so far) but have been on Neulasta since dangerously low neuts after FEC2.
Your neutropenic sepsis probably cost them a lot more than a Neulasta jab. Have to say that I ended up in hospital even with Neulasta in my system, but it still helped my neuts rise from 0.9 to 8 in three days so they were happy to let me home with oral anti-bs. I think you have a right to demand it or the slightly less expensive five-day version. We’re in the business of helping to save our own lives here. Be as bolshie as you need to - it makes as much sense for them as for you to keep you from needing any more hospitalisation.
Best of luck with everything.
Love,
Kathleen
I was treated and continue to be treated on the NHS.
I didn’t know in advance that Docetaxel would be much different from FEC and I didn’t read anything on on-line forums or compare notes with anyone at the time. I found very little difference between the two and, if anything, tolerated Docetaxel rather better than FEC.
Everyone is different and you may find Docetaxel not as bad as you’re fearing.
I had GCSF injections the following day after each chemo. The district nurse came to my home to administer the injection at a time to suit me so I didn’t even need to move off the sofa! As a result my blood readings were fine each time I went for chemo so I had no delays to my treatment. I was also given (free) NHS prescriptions for laxatives, mouth washes, vaginal moisturisers and whatever anti-emetics I needed
All on the NHS.
1st docetaxel on Tuesday and so far minimal SEs. Very wary about posting this.have to start GCSF injections today. Husbans is doing them because I was warned that the District Nurses are so unreliable with timimg visits to do it. The practice nurse at our GP surgery showed him how to do and he is brilliant. Doesn’t hurt at all. I am a terrible needle phobic, so he is very brave to do it for me!
Debbie, I would definitely ask for some injections. It’s so awful getting neutropenia and I hated having the AB drip in hospital that first FEC time.
I know different trusts do different things. At St Georges they only give GCSF as a matter of course with docetaxel but not FEC.Onc only prescribed it for 3rd FEC for me because my bloods were so rubbish at coming back. My friend about 2miles away and with a different trust has it with both.
Hope your SEs don’t bite!
Love Catherine xx
Morning
Survived the night without any sickness. Best description of how I feel is hungover (slight headache, funny taste in mouth and slightly nauseous) plus a slightly flushed feeling (that’s the epirubicin). Had my laprozole for indigestion first thing on an empty stomach, had my emend, had breakfast & the first of my steroid anti sickness pills. Not taken any dom perignon yet. Really ought to have some but sick of taking tablets already! Lol. Just trying to persuade myself to get into the shower so I can go to the hospital but feel better not moving.
Yukky but not sick. Expect that’s the best I can hope for really given what I’ve has pumped into me!
Hugs to all
Twinky x
Hi Ladies
Been a bit slack posting & just festering in bed with nausea. Haven’t been sick but not enjoying the weird taste buds. Last day of steroid anti sickness tablets so assume I should start feeling better tomorrow. Lovely to have the port & no sore veins to contend with but longing this nausea bit to pass. Trying not to think about needing to go through this cycle twice more before switching drug regimes. No side effects from the neulesta jab so far.
Am just a big woss over the nausea…but this will pass.
Twinky x
Hi
Been pretty useless as keeping this post up update. Am on day 7 from first FEC & feeling very tired still. Was expecting to be a bit better today ( in fact arranged a friend & chinese for tonight) but just went from feeling ok to a very sweaty fit of the runs in 60 secs which was a bit scary. Wondered what was happening & whether I was about to become really ill but temp back down to normal now & bottom back in bed! Made me feel very vulnerable though as I’m on my own so need to canvas neighbour in a support role in case I need help or carting off to the hospital at short notice! She can also visit to feed bunnies. Wish my family lived closer & hubby didn’t work away.
Stitches out of chest tomorrow c/o local nurse. I seem to have healed ok but the waterproof dressings made my skin bubble a bit at the edges! So glad I have the port. No sore veins to cope with. Marvellous.
Just hoping the bottom explosion is a one off…
Twinky x
Poor you. Just a quick thought re: the tummy trouble… do you recall what you last ate before it? I found during the first couple of cycles I identified foods my tum would not tolerate - perfectly permitted and ‘safe’ foods at that - so avoided them for the rest of the time, and was fine. I have met other people who said much the same, and who opted for restricted diets for the duration. Let’s just say I got very bored of pasta and tomato sauce! Also don’t be afraid of taking immodium instants or diocalm if needed.
Hope you feel better soon. Hugs.
Am tucked up with a mug of hot bovril & cream crackers, both are which hitting the spot! Maybe I will leave tuna mayo alone for a while…lol. Got to say this chicken bovril tastes great with my chemo taste buds. Wish I’d tried it earlier.
Twinky x
Poor Twinky. It is so easy to forget just how awful the Yuchy bits of chemo are. I didn’t try chicken Bovril but some nice soups went down well. I had a great love of cannelloni with spinach and riccotta. I liked Robinsons grapefruit barley with fizzy water added.
Sleep well and have a lovely Pj day tomorrow to recover. The FEC weakness hits soon.
Cackles
Hi
Woke up during the night with one side of my throat sore & an increasing temp but that stopped so big sigh of relief! Still got a sore throat but no temp. Stomach very upset still but managed to go have my stitches out this morning. Rash on my skin from the dressing looks horrible but the nurse isn’t overly worried as it’s all nice & dry. Had a wonderful shower & hairwash this morning so feeling very fresh again after two days of hiding away in bed. Back in bed now though as understandably I’m not up to much. Had a much tougher time in this first week since chemo but sense of humour just about remains intact so I guess I’m ok and should just enjoy being lazy to rest my body.
Twinky x
Still got a sore throat, upset stomach & a period to be dealing with but feel like something has ‘switched’ mentally in the last 24 hours so I reckon I’m on the mend. Found it much tougher than I thought I would & the solitary confinement has been awful. Need to work on an action plan for next cycle because I can’t feel this isolated & miserable again. Hubby is back tonight thank goodness plus as I get better I will be out & about again over the next week. My birthday looms too & members of my family are traveling up to see me.
Hugs to those of you approaching your next juicing…it’s never far away is it.
Twinky x
Ahhhhhhh there you are :o)
Glad your feeling a little better and Hubby is home now, hopefuilly ur on the mend now and will feel a little better soon.
It would be nice to have a differnet experience next cycle, I’m sure they must be aable to give you more for your sickness. You do see your GP too as well as the private hospital for advice?
I hope you have a lovely restful night, now hubby is home and the bunnies chew extra quietly tonight :o)
Sleep well Twinks
Lots of luv
clare xxx
Can’t believe how ‘normal’ I feel again…just deadened taste buds left to contend with. I’m bouncing around like a puppy today…hope I dont overdo it. Off to Tesco in a bit to restock the cupboards. Even feel like I can face the next juicing now ( clearly my sanity has left the room…). It’s definitely a ‘chemo fog’ after treatment isn’t it. Everything seems so much better when it lifts.
Lol…probably find me dozing on the ‘overdid it’ bench later
Twinky x
Hello
Just to bring you up to date I’ve been enjoying feeling better both physically & mentally ( the treatment really does mess with your head as well as your body). Celebrated my birthday & then but the bullet yesterday & had my hair shaved off to relieve a very sore scalp. I went for the quick fix early on ( had loads of hair left) to spare me further pain and also the nightmare of hair everywhere. I’m finding it quite cold as I’m wearing hats rather than a wig but the absence of pain & strands of hair everywhere is very liberating. Today I put into a drawer the hair dryer, hot brush, brushes, hair spray & hair gel! Even my handbag is lighter with no hairbrush in it! I have The Simple range shampoo & conditioner to use on my scalp when I shower. This is what I used last time around & my hair re-grew at a fast rate & evenly so I reckon that worked well for me. The Lady Garden appears to be going through re-landscaping too but I reckon the leg hairs will continue to need attention!
Going down to see my family this weekend. Hubby works down there so he’s not seen my bald head yet! Am hoping he will like stroking it for me. Just counting down to juicing no. 2 next Weds. Started to stock the cupboards again with all sorts of things to nibble & drink. Hoping to cope better this time. The first one took me by surprise as I was expecting an easier ride. Wasn’t sick though, just very nauseous. Got to be brave this time as I won’t have hubby around. Got the neighbours on standby though to give me peace of mind in case I have any problems. See…more organised…under control!
Hugs to those of you with no.2 looming!
Twinky x
happy birthday twink and well done on the shaving… hope hubby likes it… im sure he will love playing with your head i love touching mine at the mo… yup im a wee sad freak lol
good luck with swamp juice no 2 on wed.
love lulu x
Hi Twinky
Have my 2nd session on Monday. Am enjoying feeling “normal” at the moment and don’t really want it to end!
Getting very used to shaved head and quite enjoying the freedom too.
Enjoy the weekend
Jane x
Hi Ladies
Had my appt with my Oncologist yesterday. Bloods were very good, liver & kidneys functioning normally do no excuse for not having no. 2 tomorrow! Got to take the indigestion tablets for the whole cycle rather than just the 3 days supply that I had last time. I am also to try the other anti-sickness meds that I didn’t bother with last time to see of they reduce the nausea. Apparently it’s easier to control sickness than it is nausea. He just told me to keep snacking to keep the nausea at bay.
Glad I had my head shaved to a no.1 as my hair’s been coming out big time but I find it less distressing to see small cuttings coming out rather than big long strands. Not doing a wig, happiest with my hats & elasticated scarves!
Hugs to those of you with no.2 approaching. Am determined to cope with it better this time. If the weather stats sunny will drag myself into the garden rather than just hide in bed!
Twinky x