Butterfly Liz: just reading back through and wonder why you had TAX before FEC when most seem to have them the other way round? I was reckoning they may get the toughest into us first so if anyone bottles out part way through they'd have a better chance of non-recurrence. I'm only totally stabbing in the dark here!
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What a good ole chuckle at the latest posts; actually perked me up from my dire doldrums last night. Particularly you Libralady with the light hardly going on in your bedroom and our feelings of being so utterly unattractive to the opposite sex! Know exactly what you mean and was in my bedroom alone again (man is still in the spare – not sure why I call it a spare when all three boys are currently stuffed in one room in bunks! – coughing to the point of him apparently experiencing pain last night). Says he's in there tonight too but we weren't speaking last night due to him being unable to cope with my emotions and me disappearing upstairs really early, blubbing like a baby. I'm OK today so no need for concern; just the usual anxiety and needing to 'pull myself together' for the week ahead.
Eight steroids are now rattling around inside me too so goodness knows how the emotions will fare during the next 48 hours! Why don't you take any post TAX LL? You've probably already explained; I'll read back through! I was thinking I hate them and wondering whether to cut back on the dose a smidge. I necked four crouching on the floor in Lidl today as had gone to surgery to get bloods and they had no idea how to use the PICC line. A bloke eventually did it but it was a right old pavlova with blood squirting out on my cardigan and almost a dose of some extra liquid he said was similar to Warfarin. I said I wasn't having any of that! Gawd… some of us'll be lucky to survive the medical profession, let alone our malady!
Anyway, Tax No.5 tomorrow and even though I'm dreading the week ahead, I must keep affirming only one more to go after this; and hope that it will indeed be the last one ever…
I'm with you on reconstruction Lizzy; can't even go there yet, if ever. I haven't been to any LGFB, not sure if they do them in the South West but guess they must do so should try to find out quickly before my treatment ends. I'm over an hour away from hospital and think I'm out of their loop as not in my area. Won't bore you explaining!
Christine, you're one day ahead of me with your doses. You didn't seem to suffer with your third FEC though and I found that one awful. I still think FEC was worse in lots of ways than the first TAX. One nurse mentioned the 'red' liquid was particularly rough. Just seen a Yew tree reference in my herb book. Its latin name is Taxus! Has anyone hugged/booted! any yet?
BW and lots of luck to all. x
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Think I overdid it at the weekend with all the hedging; keep feeling light-headed and spacey. Has anyone else had this as a se during weeks two and three of Tax? I keep feeling like it and assume it's due to low cell counts and then I wonder if I'm imagining feeling light-headed as it seems to come on suddenly and then goes off again?!
I was supposed to go for pre-treatment (relaying my side effects) and blood test this morning but the handbrake fluid was frozen, hence I didn't get there. The Oncologist was then supposed to phone but didnt' so I wasted most of today waiting about. Eventually walked to school as was so desperate for some fresh air and to get out of the house…
It's been a very frustrating day and my man is once again constantly coughing with his third cold since my MX! He's also just blurted out he thinks he has a hernia and will need an operation… It really seems like one crap hoop to jump through after another for us since August. My sixth-sense feels the energies surrounding us are badly negative and I wish I knew the reasons. I keep feeling we're trapped in it and by it somehow and we can't see the way out.
Anyway, poor man has volunteered to sleep in the spare room, along with his cough, as I only have two nights of decent sleep to go before I'm on the steroids again.
I'm guessing the injections some of you have are for anemia (low white blood count).
I have to get to bed but thanks to everyone for all the great posts. You're all amazing! LuLu your information, help and positivity goes way beyond the call of duty. You're better than the moderators, not to mention not minding my swearing!
Love, best wishes and goodly (or Godly) night. Must get horizontal before I faint… x
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Blimey you lot; taken me all morning to read from about page 85-ish! I can't do the individual replies without note taking – and I haven't taken any – so will plough on in a general fashion…
Sorry to hear most of you have been feeling so awful. I had my first tax and was posting about feeling awful when you were all mostly feeling OK. Now I've been feeling OK and you've all mostly been feeling awful. So, I have my second TAX this Friday, and will be posting about feeling awful when you lot will be posting about feeling good again! Such is our current merry-go-round of life…
Mine, with TaxvNo.1, were mostly similar but not so many aches and pains to the point of having to take lots of pain-killers. I think se's kick in when steroids wear off and combine with the after effects of steroids, i.e. feeling a bit low as they pep one up somewhat. The swollen tongue and mouth symptoms (thrush? not sure if it actually was) were the worst for me but I go along with Lulu thinking FEC was worse as far as prolonged tiredness, sickness and foggy head goes; although Emend got rid of the sickness so that wasn't an issue after the first awful FEC experience. Emotional stuff is all part of chemo side-effects, time of month coincidence and feeling low too I imagine.
Glad you finally got Emend Jackie. Also, glad lots of you seem to now have gone the PICC line route – and so hopefully saving the poor smaller veins; although not for you Christine with having it pulled slightly out by an over zealous sounding DN! They X-ray to make sure it's in the right place so surely it would matter if the positioning has been altered. I'd imagine they'd want to X-ray you again?!
I've been clearing up after hedging all weekend. I wasn't on the chainsaw I hasten to add but have done a lot of physical work and my hips and legs have been aching from all the bending and collecting of ivy, holly and dead wood and dragging stuff to the bonfire. We spent all weekend doing it; much to the annoyance of our boys who soon tired of hard work, bonfire and being shouted at to stop dawdling and help instead of becoming transfixed on the fire.
Anyway, better get on as only four-point-five good days to go before I'm back in the dread-zone.
Don't worry Libralady; I won't temp fate by typing: :you'll xx fixx but we all get stressed to feck before the event then get through it somehow. Just get prepared with soups in freezer ready to just take out for the crap days as you can always manage soup when mouth and taste is totally fecked.
All best to you all and please remember to pop in next week when I'm feeling crap and you're out kicking your heels up and enjoying yourselves! x
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Hope everyone's exhaustion and other side effects are improving.
I watched the documentary about a woman director with a thyroid problem who then discovered she also had a cancerous lump. Bit odd as it was billed as though she was a cancer sufferer but she didn't have chemo and it was all about her thyroid symptoms. She played the cancer card good and propper!
Like Judes' idea about us meeting up for some type of power walk much later in the year. I'm South West area but don't think anyone else is. We'll have to think of somewhere everyone can manage without too much travel…
Trying to accomplish something today, i.e. immunity booster soup, marmalade and/or e-bay? Spent money in the sales I now realise I can't actually afford so must get some spondoolies in somehow. ;-/
Hope PP is OK and will feel like posting us all soon.
Love to all x
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Wishing you best for tomorrow Paula. Refer to the last few pages on here and you'll get a fair idea of Tax side effects. Some bits are better than FEC, some bits worse, i.e. mouth, weird shooting pains… Look back through; L4W gives some good info about it and others, I can't remember! But the main thing to remember is:
YOU CAN AND WILL CONQUER!
So knacked now; gotta turn in – wink, wink, nudge, nudge leaf in milk, makey-likey-Chai, deffo helping with sleep and relaxation…
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Just realised I've done a silly thing on the spur of the moment and taken an Advanced Acidophilus Plus capusle, i.e. lots of teeny, tiny bacteria are now inside me and – although they're supposed to be the healthy ones – I'm in my low immunity week (Day 6 after Tax). What was I thinking! Obviously I wasn't. Will I make it through the night?!
I already visited the Quack today to get a prescription for oral thrush… even though Quack wasn't sure I actually have it; nor indeed am I, just guessing. Now feels like I have to self-diagnose, phone the hospital to check what the Quack's allowed to prescribe, then tell Ducky what to prescribe! Anyone know what oral thrush acutally feels like? I've got a waxy feeling in my mouth, sore throat, white lines along tongue and horrid taste in my mouth. But is this just the Docetaxel?
Well done L4W and Weme, getting number FIVE 'done and…' good luck for the next five days or so of the '…dusted' bit.
Hang on in there Fairy. I'm thankful to be only having six now, due to wanting it all to end, but still worry it may be better in the long run to have had to endure eight. Only time will tell ehh… ;-/ ???
Made a great fisherman's pie tonight but can't really get into the food porn thing yet as can't taste much and just eat for cell renewal and energy. No taste = no enjoyment. Booo-hooo! x
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Gill: PICC line! Definitely the way to go with vein trouble as they may never come back; so I was told by a nurse last time. I wish I'd got the PICC line done after the first dose and saved my vein. The chemo strips their lining and makes them harden. Get the ruddy PICC line! x
PS Where is Granny Jean? And Judes?! x
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Gooseberrygirl: sorry to hear things have been so awful. It must surely pass soon… Is it tongue thrush?! Mine's full of white lines and throat is really painful. The Difflam seems to be helping but not sure how many days it will go on.
I'm now day five post Tax and eyes felt more awake this morning but I'm having to drag myself about and feel tired after doing a tiny chore, i.e. putting a wash on. Have to keep having sit downs. Keep getting shooting pains through head and my body just doesn't feel happy. MX is very tight too and looks stretched; glad no implant there as imagine it would be even more upsetting. Can't seem to shake my cold off either. What an endurance test!
Fairy: post Tax, night four was full of sweats but last night was decent, with special wink, wink drink before bed and a couple of Paracetamol to boot.
Gingersmithy: bummer about the tooth. I keep off toffees these days due to once breaking a tooth. Nightmare and makes one feel soooo old; like this crap does! Christies sounds great. Would love to go there, have a mansion and the money to buy wonderful antiques! I was once production editor on Antiques and Collectables magazine and put together the 'What's it Worth' section freelance from home. It was a great job, while it lasted…
May be try not to worry about the munchies as our bodies must be busy making (the right) cells – right?! And, we can start Marathon training when Spring arrives – right?!
Anyway, for now, pace yourselves everyone – our energy is currently mustering itself!
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Endured a bad night sweating; think it came on after taking Paracetamol to stop the aches and pains.
I finally dragged myself out of the pit, almost fainted then ate porridge, but thankfully have perked up a bit. Managed a shower in our awfully green 70's bathroom; with tiles falling off the walls, followed by a walk and now soup. Thinking I'll light a fire and attempt to nod off before the boys return!
Started using Difflam earlier so hopefully my tongue will reduce in size and all the white lines and spots will go…
KTF: I've already had 3xFEC and am four days post 1st Tax. When's everyone's last dates for these dreaded drugs? My next Tax dates are supposed to be 3rd and 24th Feb. I'm thinking it would be good to list the home stretch and then cheer one another to the Finish Line!
L4W and Jackie: so pleased you are both experiencing some energy again and enjoying doing things. And L4W, NZ ain't going anywhere; just waiting for you to visit!
LL Lisa: good news for you! Hurrah!
Hope you both had a good meet up today and managed to laugh in the face of adversity Trudes and Paula.
Gail: good luck with your first Tax on Thursday.
Gingersmithy: did you get your office sorted? Very motivated of you!
Fairy: hope your taste buds are improving. I'm thinking Bolognese this evening but also wondering if we should reduce red meat. Don't eat that much beef these days but what's best to eat to ward of the dreaded cancer is a minefield.
Linda: hope you're feeling better after your temperature yesterday? I'm thinking tax may be gearing up to hit me some more as this is my day 4 and aches seemed to get worse for a few of you around then. May be it's the bad cold causing worse se's Linda? I've been fighting one since before Christmas that I can't seem to shake off properly.
Enjoyable times to all of you. x
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Thanks for all the Tax info you lovely women.
I had a weird night drifting in and out of sleep and bones aching a bit, tongue swollen, bad taste in mouth and eyes that don't want to open; even though I may be awake-ish! All a bit hazy to be honest. Got teary again this morning – putting it down to feeling really low and getting the start of another period.
KeepTheFaith – hope FEC is easier then as I was thinking they were giving us the toughest one first?!
Poor you Linda; sounds hell and exhausting. Hope your temp. reduces or you speak to someone about what to do. I'm back in bed, feeling very lazy, listening to R4. Big frost outside and bed is the warmest and most comforting place right now.
Thanks L4W, and I have a good image of you watching kites. I haven't had the nausea either but am getting the mouth symptoms and gearing up for more aches. In preparation, the leaf's currently maturing in milk and spices in the fridge! Didn't have any last night in a bid to find out if there's any real difference. I slept much better, despite steroids, the night before last when I drank a cup before bed. I'll wait for the bone ache to actually hit this time.
Haven't had the constipation with Tax but only took one Ondanstr…thingy-sick-pill this time. At least we don't seem to have to take so many other pills with this, other than the steroids.
Happy Birthday Judes! How goes it? Hopefully you've emerged from your last FEC fog by now…
Oh, Woman's hour about to report on how we are hard-wired to be positive, even in the most trying circumstances! Going to listen to this optimism stuff now… ;-o x
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Sorry to hear you're feeling rough on your latest FEC Libralady and Fairy. Are you on your 4th too now Fairy? Hope you both feel better by tomorrow. Thought you'd all be similar to Judes.
Christine, you really sound like you've coped better than the rest of us with FEC three. Lucky you!
KeepTheFaith, did you have three Tax before FEC? I'm thinking you were on something else first, beginning with E?, but I've lost track…
I need to know if I'm going to start my plummet tomorrow but the 'Tax' women must be busy bees today! I took my last two steriods around 1pm.
We've farmed the boys out in three separate directions and gained peace and relaxation – even managed a walk without any shouting. I've felt a spacey most of the day and could do with some shut-eye before their return.
Mussels – or is it Moules – in cream for us this evening and possibly a film if I manage to stay awake.
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Just bobbing up on here as seen the title at the top of the forum and I already imagine I eat real healthy; whatever that is exactly…
I've only read the last few posts but am now wondering if anyone has looked at Dr Rosy Daniel's Cancer Lifeline kit and Health Creation Service; she's linked with Penny Brohn. Looking at the leaflet I see there's 'The Cancer Lifeline Recipes' by Jane Sen, priced at £12.50. I'm more than a tad cynical. I mean, how much of it is very clever marketing and aims to cash in on Cancer suffers? However, I also find myself pondering on the 'Images for Healing Cancer CD', or perhaps I should go for the 'Heal Yourself CD'? But at £11.75 each; would I be a total sucker?! Any advice greatly appreciated…
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Happy Birthday Gill!
Judes; your yoga fart description had me chuckling a lot last night. I think I was told to be quiet and go to sleep at one point. All very childish these emotional steroid outbursts… Hope you managed to sleep well today. I just kept returning to bed after 3rd Fec to sleep through as much as I possibly could of it. Feeling for you Judes on No. four.
I had 1st Tax today. Went OK although feeling quite spacey and odd; thinking it's the steroids. My counts rocketed to 9+ and they seemed really surprised they'd gone up so high. Still only had 90% dose despite it. Two x two tiny pills to take tomorrow then I'll no doubt plummet big time, like with FEC3. We all seem to have been blasted by that one. Hope you're picking up again Libralady?
Trudi and Josie1: glad to hear you're both surfacing from it. I got really emotional during number three and had loads of teary bouts, not sure precisely why; well the whole combination of things in general I guess, not to mention doggie downer Christmas! I still feel I'm undergoing a totally surreal experience and suddenly find I'm mourning my missing breast with a feeling of sorrow and disbelief. Can't imagine having it reconstructed though. Not sure I can face going there with more surgery and hassle after all this but will have to look into it some more.
How long does it take for the Tax plummet to hit Lizzy? And Linda, how long for the aching joints?
Lulu: I would have totally freaked with a £900 waste like that! Drummed into mine any birthday money saved in their accounts is for driving lessons and/or a fifth-hand car… Definitely no motor bikes either! Will they listen? I doubt it somehow seeing as it already feels like I'm speaking to three brick walls.
Fairy and Libralady: the very enjoyable chai seemed to have a surprising relaxing effect on us last night. We discussed it today and wondered if it had been imagined.
Hope you have Emend with any more FEC Jackie. It's outrageous you've had to endure that sicking more than once as it really sets you back and you have to work really hard to catch up again. Also make sure you push for a PICC line if your veins are protesting. It is a godsend when it settles and you don't really know it's there after a while. What's happened to Granny Jean; how she used to rave about the PICC line?!
I must get to bed. Been a long day… but will I sleep? ;-)x
Oh, now Madonna is on Graham Norton. Best check her out before I retire!
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Steady Christine… Third feckin' FEC kicks in around day three. Know you 'hate swearing' but would advise you prepare youself for a good cuss come Sunday – obviously not while in Church! May not go down too well… x
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Wink, wink, nudge, nudge… and all that!
Have heard whispers there's top quality leaf somewhere in Wales… Anyone living round those parts?!
My lovely man; he very practical and great researcher, so don't give me the credit. Here's the link he's researched: http://theoncologist.alphamedpress.org/content/12/3/291.full
We're currently researching stewing it like a Chai, i.e. with milk; the fat is supposed to do something?! Adding cinnamon, cardamon, cloves, ginger and piles of sugar right now. Will report back soonest. We tried some as a watery tea last night (in a bid I'd be well-prepared for Tax) and nothing at all interesting to report! No improved sleep, no improved relaxed joints/muscles, and deffo nothing amorous (since way before surgery – incase you're wondering – when I vaguely remember something about a bye-bye booby moment).
Moving swiftly on; Perhaps our leaf is sub-standard? And remember aching women; no bud. We don't want no paranoia kicking in… Err, I am not actually a hippy. Always wished I could be one but, sadly, not laid back enough. Doh!
Nighty night, sleepy tight, mind the miceys don't bite. x
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Also forgot to shout, 'Thank goodness for The House of Lords'. The last voices of reason managing to stop this bl--dy stupid government from doing their utmost to make life even more of a living hell for the disadvantaged.
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Oooo rooo all
Took four tiny dexamethasone this morning. Didn't want to as wondering if it'll keep me stuck to the vacuum cleaner all day.
However, it seems their role with TAX is to ward off an adverse reaction to its toxicity; it's that old Yew tree init?! All yous religious lot; go visit your churchyards and give those Yews a gentle stroke. Sometimes I believe I'm a bit religious – err, kind of quietly; in my head, and I do love a good churchyard; as long as I'm enjoying it above ground that is…
Quizzed Onc about treatment plans. He's not got the best bedside manner and seemed somewhat bored. No doubt gets fed up of the same old Q's! I apologised for my somewhat unhinged letter to him (the one where I mention Lisa Lynch being 'f---ed by the Cancer c--k' – she's a great writer). He said he hadn't received a letter. He will have by now tho'!
Anyway, regarding regimens, he said mine follows a French study that shows three is as effective as four. They used to give four but found most people were not managing to keep to the schedule due to low cell counts and exhaustion etc so switched to three FEC + three Tax to try to keep to the three week date for all doses.
They're reducing my 1st Tax tomorrow by 10% due to low counts in the hope of keeping on schedule and hopefully back up to total dose for 2nd and 3rd Tax. Who knows? I'd best keep trying to eat well – stares at coffee machine thinking 'just one ehh!'. After tomorrow I'll be keeping away from coffee for at least a week, probably longer if everything tastes metallic…?!
Well done all you entertaining posters and for your up-lifting take on things Libralady Lisa. Know what you mean – we must keep thanking our lucky stars we have a good chance of transcending our malady and incite them to continue shining for us all.
Almost forgot. Anyone read the medical profession in the States proscribe a certain leaf for those on Tax? It's supposed to help with the painful joints/bones. You stew it and drink it as a tea. MS sufferers rave about it too – know what I mean, wink, wink; say no more?! x
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