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…
x’s all…
Hi Paula and all starting Tax
It’s worth looking on the ‘Need positive posts about TAX’ thread, some of we November Lovelies have posted on there already. Lots of shared experience, just don’t expect anything too positive! My Onc consultant (only seen him once for 3 mins) warned me that Tax is horrible and he doesn’t like prescribing it. Great. However his Reg, who I normally see, said that Tax is much easier on the digestive system, which is good news for me as I had terrible pain running all through mine especially this time, and mouth full of ulcers from day 12 to 18. She also warned that Tax really hits bone marrow so blood count plummets even more and expect pain in bones and extremities with possible nail loss. This seems to fit people’s experience here and on the Tax thread. However like everything else, people do have different levels of SEs.
It never occurred to me to stop work. Naive probably. I took a month off to recover from Mx but now am taking sick days when I need them. I’m lucky to have fantastic colleagues who are very understanding but there is only so much they can take off me and next week is full of stuff only I can do. At least I can work from home some of the time, but I do miss going in. Also we are having our roof replaced at the moment. Yes, in January. People have bought the house attached to our semi and decided to have theirs done before they moved in. So it made some sort of sense to have ours done at the same time. So not very relaxing at home and had to spend yesterday afternoon moving all the stuff down from the loft. OH was helping of course but he doesn’t like going up the ladder. Suffice it to say I’m not bothering with my post Mx exercises today!
Off to bed now with my 8 steroids doing their worst to stop me sleeping I expect…
Paula, I’m with you in the steroid club (+ I’ve got my new toy 
lovin it already) I forgot about you being diabetic so you did the right thing but perhaps take them a little earlier. I found TAX different and the best bit for me was very little chemo fog and after day 12 I actually started to feel quite *normal*, much less tired and didn’t have time for daytime tv I was hardly in the house!!
Filosofie, I hardly left the house for the first 10 days after 1st TAX and I daren’t drive cos most of the pain was in my legs & hips. I know we’re all different and you may be ok but if you can I’d reschedule for the week after if you can, no point putting undue pressure on yourself.
KTF, I resisted the iPad as long as I could but the geek in me won through in the end I thought it would be really fiddley to use but it’s not at all, very impressed so far. Love the thought of ‘food porn’ & am finding myself checking in for snack ideas although olives are a def no for me, yuk! But lemon meringue had me raiding the freezer, banana custard is a fav for me at the mo.
Tip: Iceland do a good range of quick defrost puddings, ready to eat in 15mins!!
Time to see what other useful apps I can find, any suggestions gratefully received
t.t.f.n
L4W
Hi Paula,
I had 3 Tax with Herceptin and SE were not too bad. It hit me day 5 for about 3 days - just feeling really rough with horrible taste and sore mouth. The third time was the worst as I felt ‘under the weather’ for the whole three weeks but did manage to enjoy Christmas. I also had pain in bones I have had surgery on. Had 1st FEC 2weeks ago and tiredness is now resident and like you don’t often leave my comfort zone and have been watching DVDs in the afternoons - much better than daytime TV - lol. I’m sure you’ll be fine. I’m counting down to last one - 4 weeks today, just! I didn’t sleep with the steroids on the day of chemo because I had them in a drip too but I resigned myself to it and filled my extra time productively - reading or keeping a journal.
Take care, Liz.
Paula & Filosofie, Forgot to say good luck to you both and don’t worry, remember we are all different and the steroids are only for a few days then you can crash out 
I’ve taken my first Ramipril and as recommended gone to bed, have to be careful when I get up and take it slowly so I’ll see how it goes! Don’t worry I’ve brought plenty of snacks to save me getting up during the night!! LL rather than sleeping in the kitchen I’m considering bringing the fridge upstairs!!
L4W
I had my 5th tax and carbo today too so can join L4W and Weme in the 1 to go club.
As for the tax… I haven’t found it too bad but certainly couldn’t work and as time has gone by I am feeling more and more fatigued although wide awake thanks to being in the steroid club… On Chemo day I am drowsy when i get home then awake through the night… Fine on the fri and most of sat then start to go down hill, with swollen mouth and thrush (yes it’s kinda White frothy mouth pleasant1) I have fluconazole tablets, nystatin suspension, bojela and difflam… It gradually gets worse until about wed then start to improve again and is usually ok for then following Sunday… I get constipated for about the first 5-7 days I’m the laxative queen then get the runs for a few days. Have no nausea until steroids wear off about day 3 or 4 so take domperidone. Off my food a bit with nausea and sore mouth then eat like a hoglette… Like eating minty things but not strong mint… Like minty kitkats, viscounts, clubs, aeros, echoes, after eights etc also like chilli when mouth is yak as can actually taste it a bit… Food doesn’t taste salty enough or tastes too salty! Explain that one? Like pepsi max and drink loads off alcohol a wee bit and off coffee too… Aches and pains start around day 3 not agonising just uncomfortable and keeps me awake at night especially in areas where I had broken bones like ankle and ribs… Also where iv had wear and tear like spine and hips… I take tramadol during my dodgy week before bed and paras rest of the time if temp is normal (always been normal so far). 1 nail has started to come off yesterday… Only a littl bit but this often doesn’t actually happen when your on tax but when you finish it… During my bad week I get very weak… Cannot go up the stairs for a couple of days, feel faint and dizzy, get palpitations and breathlessness but not seriously ill so i just take I easy and ave a couple of days in bed… Got a shower chair from the DN so I can sit in the shower which makes life a bit easier too… Hope that doesn’t sound too negative… I’m on carbo as well as tax so some of the SEs might come from that… I also had a reaction with hallucinations and turnight bright red after about 20mls of tax had gone in, so now have piriton and hydrocortisone infusions before Chemo starts.
Paula try and take your steroids first thing in the morning then at lunchtime but not any later than about 3pm otherwise you might be awake all night… I took mine at 8 and 12 didn’t sleep til 4.30 am and same time today and despite being up since 9am And a 10 min snooze on the Chemo ward I’m still wide awake.
Love the food porn idea… I just love food at the mo… Have put on 5.5kg since starting Chemo! Had spaghetti Bol for tea which tasted too salty then had a packet of ready salted hula hoops which tasted lacking in salt, then tried quavers not cheesy enough then corned beef sandwich which was ok… And a few of my minty choccie collection!
L4W I got an ipad2 after cycle 1 and I love it (most of the time but doesn’t want update to ios5 and cnt ge flash or java) didn’t get the 3G version though as just go online in the house or read books/play cards when out and about or use my phone to go online.
Filosofie, think you might find work very hard going but you will only really know how you feel at the time as everybody is different and depends on your job too.
Good luck to both you and Paula tomorrow… Just realised it’s taken me over an hour to type this post… Concentration level sucks obviously! LOL
Take care girlies
Love Lulu xxx
Good morning all.
I managed to sleep from 12.00 - 4.00 then had eyes closed but still awake! Not sure if I’ve slept or not until my little kitty woke me at 7am! Up early to await the arrival of my Tesco online shop, just in case I crash the next few days!
Pleasant 1 - what is a Advanced Acidophilus Plus capusle? Is it like a pro-biotic tablet? If it is we were advised at the Dietician Group not to take anything with any bacteria, even friendly ones! e.g. soft cheese, think that includes primula, not sure about Feta? Basically we have to follow pregnant woman’s diet lol.
Lulu - thanks for all the information, I’m certainly wide-eyed now!! Lol all that chocolate! I think I’m the only one who’s managed to lose weight, don’t know how I’ve managed it, must have been eating far too much before diagnosis.
Hi Filosofie - hope you managed to get some sleep, best of luck for today, what time is your jungle juice? My is 2.30pm.
Has anybody else got chemo today?
I haven’t lost my taste buds, but my sense of smell seems to be extra strong, and fizzy drinks from the fridge always taste extra icy cold! I’ve still got my eyebrows and eyelashes and some whispy head hair which is about 2 inches long and seems to have stopped coming out, so not completely bald, it’s like baby’s hair lol.
Have a good day and weekend everyone.
Paula x
It’s funny but I was given no advice at all about what food to eat / not eat! maybe the nurse forgot, so I’m just carrying on as usual. As we have a puppy in the hosue though, I am fastidious about hand washing and gel, and I can’t stomach cold food anyway so that’s not really an issue. Plus I don’t eat soft cheese anyway!
Pleasant - As regards the acidophilus - I wouldn’t worry too much. I take it the week before chemo after day 14 when neuts should have started picking up, just to try and get the gut back into some semblance of normality before the next onslaught. I did mention to the registrar and she said best not, but it probably wouldn’t do any harm.
Good luck Paula and Filosofie today - surely not many more to go now?
Paula, I’ve got eyebrows and lashes too - so the hideously expensive eyebrow pencil I bought was a waste of money! Never mind, better to have them, even though they are thinner… Obviously I was quite hairy to begin with!
Anyone got any more food porn suggestions today? I’m thinking salmon and prawn bake for tea tonight… And I have the rest of those olives inthe fridge to eat!
Morning All
Well not too bad a night, slept on & off and didn’t suffer any ill effects when I got up. Am going to have a nice lazy day today just while my blood pressure settles down, don’t want to take any chances of passing out if it drops too low!
Paula, glad to hear you got some sleep hope you’ve ordered lots of nice goodies from Tesco, probably best not to tell LL or she’ll be round raiding your fridge, lol
Lulu, good to see you back. Know what you mean about concentration (or lack of) I keep starting things and then wander off, come back 2 hrs later and remember what I was doing!! As a precaution I’m using the slow cooker and electric pressure cooker a lot and set timers if I’m cooking anything else and if I run a bath I stay in the bathroom cos I nearly flooded the house a few weeks ago!
KTF, Sausage & Leek bake for us tonight, yummy I hope taste buds hang around long enough to enjoy it! I was told not to eat anything that may upset my tum especially ‘at risk’ foods like pâté, soft cheese, prawns & take aways (although the nurse did say if it was one I’d used before & trusted it should be okay)
Hope everyone has a good day, keep smiling. And for those having not such a good day remember each day is one nearer the end
t.t.f.n
L4W
Ooops pressed wrong button & submitted too soon!
I’m going to bake a cake today, it’s like a sponge at the bottom and on top comes meringue with fresh blueberries. Very tasty.
The more I read about Tax, the more my apprehension. I’m in a twix because I feel if I complain about too much SE’s they might rather reduce the dose and I don’t want that. If I don’t complain they think all is well and don’t give me meds to help me with them.
This morning I woke up with a very swollen and sore thumb. Now I never ever had this in my life before. What’s happening? I put some Ibuprofen gel on it. Is this a case of phoning the invisible breast care nurse?
My husband goes out for a meal tonight as a colleague is leaving. I’m happy for him to have a good time for a change, he is very supportive of me and very worried about this whole cancer thing, so it’s OK, yet it makes me a bit sad and jealous. I can’t taste anything really anyway. The olives had a strange medical taste yesterday.
Do you feel like spoiling people’s party if you turn up somewhere were friends gather to have a good time? A girl in our churh got married, we weren’t invited to the wedding but I actually wanted to go to the service. It would have been lovely to see her and all the visitors. But I didn’t go as I thought I spoil their party.
Lots of wishes to everyone of very little or no SE’s.
Christine xx
Ummmm Paula what goodies were in your tesco shop. Describe them nice and slowly Yum Yum.
Someone mentioned desserts which defrost in 15 mins from Iceland…Lisa’s gone to Iceland lol
And Christine mentioned a Twix in her post - love twix’s!!! - I see food in everything!
Good luck to our tax team - really hope all is well and SE’s are baby ones - I have to be honest and state Im bricking it for TAX.
I spoke to the chemo nurse yesterday about the steroids - she didn’t seem bothered and said if you didn’t take them before it wouldn’t stop the treatment they would just give a higher IV dose of steroids on the day. But as I’ve mentioned it she said she will get the prescription sorted for my next flush visit next Thursday.
I just booked Look Good Feel Better at my hossy but its 6th Feb, 5 days afar my 1st TAX - bit silly really but the next one isn’t until April so I want to get in. I did say to the woman if I’m unwell can I cancel and she said yes - so heres hoping I can go - I keep putting it off and I should have gone already!
Has anyone here had reflexology? Im keen to try it - any advice?, I have realllllly ticklish feet though - will this cause a problem - I’m not joking if she tickles me I’ll kick her in her face…all involuntary of course - its just how I react to feet touching! lol
Lisa I love Twix too, one of my favourite biscuits, always has been. I have the fun size ones in the cupboard …
I could never go to a reflex thingie, just the thought someone touching my feet, I’m hopelessly tickly, would never enjoy that, pure toture for me LOL LOL
Christine xx
Christine, cake sounds lovely especially the meringue, I buy the ready made cases and just add different fruit and ice cream for a snack.
I would ring your unit about your thumb, it may be an infection and after seeing my onc yesterday he told me to monitor my fingers and take very good care of my hands (avoid washing up, use gloves if you do).
I haven’t been out & about socially much since dx (real home bird) but when I have I tend to get the ‘how are you’ bit over with then concentrate on them & what they’ve been up too, if they start ‘going on’ about my dx then I politely change the subject and tell them I’m out to get away from it and have some fun. Also if it’s an invite then when I accept I explain that I may not be on best form and not to worry if I slip off early and under no circumstances do I need (or want) fussing over
Taste buds are going already & the waxy tongue has arrived 
not that it’s stopped me eating, on that note it’s time for lunch!
L4W
LL, my mum does reflexology & massage and I don’t know if it’s the way they do it but it doesn’t tickle. If you warn them before they start they can start on the legs/ankles and work towards the feet, I love it and it’s so relaxing, just wish mum lived closer I’d have one booked every week
t.t.f.n
L4W
Very quick one as on way to bed for nap!!
Lisa - reflexology is the best. I have had 3 treatments, and it fulfills therapy on may levels - emotional, physical and in supporting my poor old body. Also the healing power of touch, and being able to talk about what’s going on with someone who is not involved is a blessing. I would say “go for it” and for some reason no the feet don’t tickle!
Lovely friend came to visit this morning - got to listen to all her news and woes for an hour! I love that! So boring talking about me all the time
xx
I’ve just had an Indian Head massage, that was nice, better than reflexology as I couldn’t relax properly
as regards food from a chocoholic I am now a fruit-a-holic I have boxes of chocs left from Christmas (and good one’s!)and all I crave is fruit!!! probably ate more fruit this week than I did all last year!
Well still waiting to start treatment - appointment at 12.30 but they gave my cold cap to someone else despite my ringing this morning to remind them…
Nice idea rescheduling work next Thursday Debbie but it’s a national meeting so rearranging the great and the good is not a possibility. Not to mention all the people waiting on tenterhooks for the results. Still thanks for all the warnings everyone, if I don’t feel up to driving I’ll just have to get up earlier and brave the taxi/train route.
Sympathise with all the peculiar taste experiences. As I think I posted on here before, I was expecting it to be like a heavy cold but of course that affects smell not pure taste receptors. I’ve had problems with bitter so often can’t taste olives and the smell without the taste is slightly medicinal. Also experiencing lack of salt now Lulu, though your experience of it coming and going in one sitting is odd - maybe interaction with smell again. I’ve even added salt to food occasionally which is something I never usually do. Somehow never seems to affect sweet receptors though!
Lisa have you booked on to a Moving Forward course? I wanted to go to the Feb one in QE, where I’m being treated, but it’s on Monday mornings and I’m teaching then this term. So I’ve booked onto the April one which is at City - thought I might see you there. Must book a looking good course, still have fair amount of head hair but eyelashes going fast now.
Filosofie, I hate when people say to me “you’re so brave”, but reading through your post re work I thought “she’s brave”. Hope you’ll be fine. Take a rest too though
The cake is in the oven and here is a link to the same cake when I baked it last time s1062.photobucket.com/albums/t495/Forbes_Fraser/
Thumb seriously swollen and now I think I know why my lymph node has been swollen on Tuesday’s ultrasound, eh?
Christine xx
Hello Ladies,
Been reading all the posts, at last feel better, took till day 10 of the Tax, but went to work today and felt so good to be nearly “Normal” whatever that is!
Love The Idea of taking the Fridge to the Bedroom…Classic!
The Reflexology at the Hospital is really Fab, Have ticklish feet but it doesnt tickle and really is relaxing. Snorting with laughter at you Libra… involantarly kicking the woman in the face, OOOhhh Awful!
Feel Cheered Up Thanks Girls xxxx
Christine, do you do online ordering/delivery?? That cake looks delicious, I’m positively drooling!! Recipe please if you get chance
GG, the only way is up now hopefully, I found once I started to feel better I just felt better every day and had so much energy it was great
L4W