Hi Ladies,
I am sorry to read your latest posts, I thought you were all doing better this time round. I’m going for my second cocktail next week. I feel I have been very lucky so far, mild nausea, foggy head, one mouth ulcer, carpet tongue and hair loss after 12 days. Really nothing much to complain about. I keep waiting for it to hit me so it probably will next time.
I’ve not heard of the Bowen Therapy, what is it?
The worst thing I’ve done so far silly head wise is to go to the local supermarket and realise I’d left my ‘booby’ at home!!! My daughter told me it didn’t notice but I knew everyone was looking at this strange lopsided woman. Thank goodness I had a handbag to clutch to my chest. I now have a note on the front door ‘W/B’ for wig and booby. I won’t even look out of the front door without my hair on!!
Hope you are all feeling a bit better now,
Take care and love to you all,
Jane
Hi Jane,
I haven’t had Bowen therapy (Loocie has and might be able to answer this better than me) - but the therapists use fingers and thumbs to target tendon and muscle areas to help alleviate pain mostly. I think it is supposed to re-balance the body restoring energy and relieving stress.
Well done re mild side effects, I think you might be one of the lucky ones and long may that last…not sure about your loopy head LOL!!
Lynn x
Hi all
Due 3rd lot of chemo on Tuesday and I too am dreading it. I think I have lost count on the amount of times I have said no more chmo for me. It seems such a long way off to the end and will my poor body be able to cope with it let alone my sanity. Does anybody else feel like they are living on a knife edge - waiting for my temp to go up to 38, waiting for all the nasty nasty side effects to kick in. I am hoping the side effects wont be as bad this time around (ha ha) The Emend stopped me from being sick but the nausea was awful didnt sleep at all on the night of the chemo. I also had injections in my tum this time around as my immune system was so low after the 1st lot, they gave me terrible backache but if they help to build up my immune system I will keep having them, anything to help me get through this. I am now of the mind set that I will see how the next 1 goes and then make a decision. 1 more Fec to go after this one and then 3 Tax (which I am also dreading after reading the side effects of those!) Sorry to sound negative but its how I am feeling at the moment. Love to all chemo ladies. Karen xx
I am so grateful for all your support you are all wonderful - we are all going through this. Still feel sick but emotions are calming now - i have not had many weepy days - can only blame the chemo - i was actually happy before it started through all the lovely thoughts I was having and joy at being alive.
Lynn described the Bowen well - just very small movements of finger and thumb in precise areas while you breathe out slowly. The Therapy I am having is to help my body accept the chemo and to calm me but also energise me!!! Sounds strange but I feel it is helping. If you have a specific injury or pain it can be pinpointed to help with pain and self-repair.
I hope you are all coping as best as possible - and being kind to yourselves. Good luck with your next sessions - I will be posting happier thougts soon - Karen recognise the knife edge thing big time xxxxxx
Karen I have got to start the injections too on Sunday - don’t know if I will do or let my OH - what do you do? I have just got a leaflet teaching me how to do it! x
Hi Lynb
I have the district nurse come in for 5 days and she injects me. I am too much of a wimp to do it myself and I know hubby would not want to inject me (maybe on a bad day yes!) It does tie you to the house but they normally say they will come round about 10.30 - 11.00am and so far they have never been later than that. For me it works because I feel more confident her doing it and I could imagine if I did it or hubby I would bottle out, but with the nurse its just straight in the tum then gone. You have to do whats right for you. After day 4 I had terrific back pain in the small of my back, didnt sleep all night but that soon wore off. I was told that could be a side effect and me being me I tend to get every side effect going! Im actually hoping I will have them for the rest of my treatment as they help to build your immune system. Anything that does that I will have! Good luck anyway and let me know how you get on. Im due my 3rd Fec on Tuesday so really not looking forward to that. How far along are you with your treatment?
Love Karen xx
Hi Karen, i also get the worst back pain ever, a painful throbbing in the lower back. I found a hot water bottle helped with this, it took the edge of it, although i still had a sleepness night with it. Added to the pain of the docetaxel side effects its really not nice, i will be mentioning it when i go for my next chemo on wednesday. That will be my 6th chemo and then only 2 to go, yay.
take care
anna
Hi Anna35
Only 2 to go, cant wait until I get there. I am considering asking my consultant what my chances are if I only have the 4 Fec and not have the 3 Tax. I have been reading all the side effects of Tax and they sound terrible. I have become a real wimp since starting chemo and really dont want all the terrible Tax side effects especially the sickness. I did put a hot water bottle on my back and that did help. I felt quite rough during the day and my temp kept going up and down but it was my 10th day so not sure if that was due to my immune system being at its lowest. I was terrified that I was going to end up in hospital as my temp went up to 37.5 at one point. I kept thinking please dont go to 38 and fortunatly by the following day it started to come down again. As I said in one of my previous posts its like living on a knifes edge!
Love karen x
Hi Karen - know what you mean about the Tax…i’ve got one more FEC then the Tax starts. I’ve not allowed myself to think about it too much as the FEC has been bad enough, but guess I’ll have to sooner or later. I think we’re just gonna have to see what it does to us once we start, afterall it might not be too awful?
This is my middle week and it hasn’t been very restful (not helped by having to go to hosp two days in the week) so I feel more weary in lots of ways than i did this time last cycle. Had planned to write an assignment today but watched two hours of ‘come dine with me’ instead! Always entertaining but not very productive. Maybe I’ll have some ooof in me tomoz…better find some from somewhere as I’m planning on going in to work for a couple of hours each day next week.
Can’t believe it will be round three in just over a week - me no likey!
Hope you all enjoy a lovely, floppy, SE free evening, and a sunny Sunday
Lotaslove fellow FECers
xxx
Hi Karen, i know what you mean about feeling like a real wimp since starting chemo, everything is suddenly really scarey. I cant believe im days away (4 sleeps) from my 5th cycle, and my 2nd tax. It comes around so fast, 1 minute im thinking yay 2 whole weeks until next one, then suddenly its the weekend before. I have heard the 1st is the worst, must be cos you dont know what to expect, fingers crossed for this next one. I must say, i was tempted to say no more after last one but i guess they wouldnt say you need this many if you didnt really need it. I try to keep in mind how happy i will feel after surgery when they say its all gone. We can do this and get this thing beat!
take care
anna
Hi All,
I have just been reading all the latest posts with interest as I am having my 3rd FEC Tuesday (well I think I am, that’s if my period which has started today and doesn’t appear to have been stopped by the chemo doesn’t flood like last time… I am really worried as this will delay the chemo - not that I want it!!). I had also started reading about the side effects of Tax - my chemo nurse said that the FEC was the harder regime but when I read the various posts on Tax it seems worse…starting to freak about this already.
Anna - what were the side effects for you on the 1st Tax? Have you been coping ok?
Lynb and Loocie - you both sound perkier which is great. Lynb - re the jabs in your stomach, if you felt you could do them you could get the nurse to show you. The reason for saying this is that sub-cutaneous injections are very easy to give. There’s no fiddling around as the fluid comes in a pre-filled syringe with needle attached. You also won’t feel it as the needles are so fine these days. Sub-cut is given at an approx 45 deg angle - if you get the nurse to show you and you feel brave enough then you might be able to do it. When we were training we used to practice into oranges LOL - I don’t think she would be too happy with that though LOL.
Helen and Hazel - how are you both doing??
lots of hugs to all
Lynn xx
Hi,
i have had periods throughout chemo, 5 cycles in all, and so far it has been ok to go ahead with chemo. The tax i definately found the hardest, the side effects were more intense but i will say that i think i recovered more quickly. I have felt more normal in the way of more energy after all the side effects were done. I think i had all the side effects going (typical). It started on i think day 3, i felt flu type symptoms, i felt hot and shivery at the same time, temp went up to 37.2 but no higher. My baseline has been around 36.4.
The next day slept for most of it, woke for the occasional couple of hours then asleep again. Around day 4 i started to get giant pins and needles all over. Kinda like a pain in my leg, then tummy, then head, a bit like nerve pain i think. Also achey bone pain, but bearable. I think the worst pain i felt was from the injection to boost bone marrow, that was lower back, so i dont think this was to do with tax. Also got furry mouth and throat, salt water mouthwashing sorted this out though. The side effects were fairly intense for me but everyone is different, and as i say, by about day 6 i was feeling pretty normal again.
hope this helps and doesnt sound too scarey, i am such a wimp, and i am going back for the 2nd one on wednesday. Oh i felt more sickly with the tax than the EC but i think most dont, will try to get different antisickness meds.
take care
anna
Hi All
Sickness subsided a bit late tonight so I have pigge out while I have an appetite. The injection kits I have do not have the sharp needle attached you have to put a liquid into a bottle with powder in to mix it - then change the needle and then jab - no nurse showing us just an instruction sheet with photos!!! Have to start them today - Sunday - so no nurses to help.
My onc said that TAX is easier!!! he may have been taliking about sickness but read on the TAX thread and its no holiday - expect aches and pains and no energy - at least painkillers may help - the anti-sickness drugs just dont work for me.
Karen I have only had 2 FEC so far - with a 4 week gap as in hospital with neuts and temp. One more FEC and then 3 TAX - think you have to have the steroids and injections with TAX too.
Am going to try and get out tomorrow - just hope the horrendous nausea does not return - not so weepy now and emotions more stable - hoping for two good weeks before next lot of terrors…
Hope you all enjoy rest of weekend - love to you all. Lynb xxxxxxxx
Hi Ladies,
I think you are all wonderfully brave, especially giving yourselves injections!! I do not have a problem with needles, providing its other people putting them in me.
I’m back for dose 2 FEC on Tuesday, hoped it would be as good dose 1 but after reading your posts I am not so sure. You are so worrying me about Tax too. Def don’t want to play this game anymore.
Take care, love to you all and good luck to those having another session this week.
Jane
Hi everyone,
Off for number three in a minute. Wonder how this one will go! End of normality for a bit. Went away last weekend and did 7 shows this week, it was just like being a normal person and i want it to carry on! I hate the actual day of doing it, using the cold cap takes hours and sometimes it’s difficult to keep cheery!
So proud of everyone, we are nearly halfway!
xx
P.S bought a stone from a buddhist shop to hold during chemo to relief stress. I’ll let you know how it goes!
Hey All!
Not been on in a while…nice to catch up with some of you on facebook!
I’m onto day 4 and Chemo brain in full flow!!..took my steroids again today!! Woops!! Hope that aint too bad…only s’posed to have them for 3! EEK! PMSL…I’m hopeless!!
Trumpet, let me know how that wee stone goes…anything to help is worth a shot. Is this you at half way point now? I’m soooo jealous if it is…I have another 5 & then rads! :o(
I asked re tax SE’s (cause I’m lucky enuf to tax No2 on Christmas Eve)& was told to expect the worst with the first. She said that it can be very painful & I may end up in bed the day after!..que day off work for OH!! But if that’s the case there’s painkillers that you can have for the subsequent ones, but same as FEC they need to see how you react first. She did say that generally women find the nausea way less of a problem on Tax…which is the HUGE thing for me. Pain I can handle…managed a split pelvis thru 3 pregnancy’s so a bit of joint pain shouldn’t be too bad…haha!! Yeh right!! I’m a wuss!!
Know what you all mean though…reading the tax threads on here is a bit scarey…fingers crossed we all sail thru it! Most of you seem to be kinda on a 3 FEC & 3 Tax regime, so you’ll be there one before me (I’m 4+4) & can let me know how it goes!
Love to all
Hazel x
Hi All
well I’ve just had the week from hell. Feel so glad to be back in the land of the living. Last Monday 3pm dancing round the living room to some music making the most of my last hours of freedom before FEC 3, 4pm started to feel shivery, 5pm temperature of 38.1, 6pm in A&E fast tracked into an isolation cubicle reading the ‘what to do in patients with neutropenic sepsis’ flowchart on the wall, 7pm temperature over 40 and feeling pretty shit I have to say. Midnight admitted onto emergency medical assessment unit… came out yesterday after SIX DAYS!!!
Bizarrely I didn’t have neutropenia - the blood count for neutrophils was 9 as opposed to 0.8 the previous Thursday and my white blood count was also high, so obviously my immune system had kicked in just as it should do when presented with an infection. I hate to think what it would be like if I did have neutropenia as the previous week. As I had absolutely no other symptoms other than a stonking headache and dehydration they were a bit flummoxed - sent me for a chest xray but no infection there, nor anywhere else obvious. So they thought I had swine flu - viral infection, and put me into cubicle on barrier nursing - only people wearing full masks and gowns etc could enter. Great for confidence building! Finally that evening the bug doctor (as he introduced himself) said that they had grown a nasty bug from blood both from my veins and from the Hickman line. So, off the barrier nursing, and onto intravenous antibiotics for five days. After three days I felt back to normal but due to the antibiotics had to stay in hospital, locked away in a cubicle with no tv, no one to talk to and no-one coming to talk to me except to give me drugs - this was to protect me from the nasty bugs on the ward not the other way round. By Friday I was going up the wall with boredom and practically cried when the onc told me I had to stay in till Sunday.
Now I have a gentomycin (antibiotic) in my hickman line with only a 50% chance of working - I am dreading this infection coming back. I can’t believe it started so quickly. I was planning to go away to Exmoor next weekend - forget that now, I want to know I am within spitting distance of A&E. And I can’t start chemo till the gent lock is finished, so now I am two weeks late for FEC 3, and probably an entire cycle behind by the time I get there next week. And I have to go back to the chemo ward every day this week to continue with the gent lock. I am starting to dread this hospital! I’ve never spent so much time in a hospital in my life.
The bug is called Stenotrophomonas maltophilia if anyone is interested! It apparently lives on plants and in water and is not normally a problem unless you have a plastic line like a hickman or catheter in. If it comes back I’ll have to have the hickman line taken out and then I don’t know what they’ll do. Two phlebotamists tried and failed to take blood from me after stabbing me in the back of the hand and the foot several times. Even the doctor couldn’t manage it.
So, glad to be back in the land of normality, if that’s what chemo is. The only positive thing about this is that my health insurance pays per day for inpatient stays which means a hefty chunk of money they now owe me - that’ll pay for next month’s mortgage which is great as on Monday I had £1.62 in the bank account to last me till next year! I’m beginning to think I should change my CV to ‘professional patient’ Which hospital wants me next?
Hope you’re all doing better than me - you seem to be sailing through and leaving me behind … I just want it to be over and done with, and now I’m due for my last session on New Year’s Eve or later. Great!
all the best
Helen
One other thing. I haven’t had to shave my armpits for the past four weeks, but now it’s nearly 5 weeks since my last chemo I have noticed they are growing back - not with the usual dark thick hairs, but with little white fluffy hairs, fine and hard to see. Weird! I’m sure they’ll all get zapped with the next cycle.
I’ve still go my head hair - a bit thinner on top and it’s still falling out a bit, but the cold cap has done it’s job so far. Not sure if it’ll hold out for the future cycles, though.
Helen.
Good luck Trumpet1 hope round three is better than the last two, sounds like you’ve had a wicked couple of weeks 
Go girl! Would also like to know about the stone thing…I’d lick a lamp post if someone said it would help (exept the bit at the bottom where dogs pee, as that would be wrong!)
Like you say Hazel, we’re all in this together at about the same stage, and enduring the same experiences - what a little army of fighters we are…and how lovely to have people around us that really understand. Like you, I can do the pain thing, but nausea and sick…ooooo sends shivers down me spine!
Facing going in to work this afternoon, just for a couple of hours, and feel strangely anxious / excited by the whole prospect, which is a bit odd, because all I shall probably do is talk and read my email! What a scardy cat!
Can’t believe that this time next week I’ll be being subjected to round three (where’d the break go), so will take a leaf out of T’s book…and will really make the most of this week,
Hope you all have a good day
Lotsalove xxx
Ooooooooooo Helen - what a bloomin nightmare!!! You pooor thing 
Don’t worry, we wont leave you behind…we’ll still be there for you once you get going again.
I’ve a PICC line, so learn’t a salient lesson from your dreadful experience. If I find myself with a temp, I’ll know there are two things that need to be considered. You must have been going round the bend in your cubicle?
Know what you mean about spending so much time at hospital as a patient - it’s pants isn’t it?
Keep strong hunny bunny - sounds like you are doing a good job of that already?
Lotsalove to ya
xxx