This is weird - I posted this last night at midnight, but it seems to have disappeared
‘They told me there would be swans’: today’s post onchemonights.blogspot.co.uk/
Morning all.
QD - no hallucinations for me on FEC. Was slightly delirious on TAX and found out last night that theyre going to reduce the next treatment by 20% as they think that potentially the side effects could be dangerous and cause long term damage as my body has been waving a few white flags…
I’m not particularly happy about it as it means im only giving it 80% but they are the experts…
Cress - it;s the supremo trial that theyve asked me to particiapte on. Ive said yes… but on50% on it actually get the radiotherapy but it sounds interesting… it gives me fewer options and delays the reconstruction, but tbh i will throw anything at this damm thing if i can and am not worried about the cosmetics. hey ho - fate will decide if i get selected…
I’m going to try and get on the LGFB course at my local hospital…i have only heard good things. I did Yoga at the Haven in leeds yesterday and had an aromatherpy massage afterwards which was just lovely. I wanted to cry when i first sat down on the yoga mat as i was the only one with no hair and i think all the other ladies were not having active treatment but they were all lovely and came and talked to me afterwards which made me feel good.
Are any of you having to take sleeping tablets???..I seem to have been on them for months and every now and again miss one but then have a really bad night and feel wrotten the next day. What to do … body needs sleep but dont think i should be taking them every night?
Lots of love to all…
mx
Mandy - my last dose of tax was reduced by 20% . mr lumpy has still put up his white flag so dont worry too much.
Cybele - your blog helped me a lot . i know that you had an extended wait before this last lot of chemo but the fact that after 4 weeks your body had begun to recover was really heartening.
3 hours before im poisoned. eek!!!
Hamley - any news on the other lump?. saying a prayer for you now.
QD
QD - I can’t wear my perfume either - I am keeping it in the cellophane until chemo is finished. I think the hallucinations described were a reaction to other drugs. FEC did not make me hallucinate. x
Mandy - Interesting about the trial. I think you would soon know if you were really being irradiated cos your skin would burn, if not during rads then after. Slap on the cream, just in case. As for sleeping pills, I try to just take them just occasionally, as they are addictive. However, I don’t think during chemo is the time to tackle it. At the end, when feeling better able to cope, you can wean yourself off. If necessary you can do a few nights without sleep - remember - if you can do chemo you can do anything. x
Cybele - so sorry the swans b*ggered off. Hope my deer don’t do a runner. x
QD, I won’t have news on the lump until my appt with my surgeon on 6th March. Not too long to go but my worry is that as my 35mm lump grew in less than 10 months that this could have started between being dx on 13th Sept and my 1st chemo which was 14th Dec. I don’t think I’ll get an earlier appt though.
I have just had the MacMillan benefits advisor round. ESA hopefully sorted for the forseeable, once I get the form signed by the hosp. You don’t have to fill it all in any more if you are having chemo. Result. She also filled in the forms for a blue badge. Now I really feel like a granny. Kind of hoping I can’t get one. 
Hi. Had my first TAX/Herceptin on 14th Feb ~ Valent ines Day Massacre came to mind!! I was fairly lucky with se’s of FEC once I ! Felt brill on day 2, even did some cleaning!! but paid for it on day 3 onwards. Terrbile joint pain from knees down, ankles and toes were worst, (maybe I ought to lay down more to distribute pain more evenly!) Only given paracetomol for pain relief, which didn’t touch it. Can’t taste anything, and finding it hard to find a drink I can take (must admit haven’t tried Baileys again yet!!) Don’t even like the taste of water ~ help ~ anyone got any suggestions? Unfortunately I can still taste chocolate!! but after gaining 10lb overnight due to steroids, I don’t think that’s a good thing! I feel like a huge blob! A few of you ladies have had tooth problems, same here, I did try Cordosyl, which I too found to be too harsh, I used to be a dental nurse many moons ago, and I’ve found that after putting a temporary filling in my own tooth, curtesy of Boots the Chemist, that using Sensodyne toothpaste has done the trick and taken the pain away, not the best taste in the world, bur heyho if it does the trick, it’s worth it. I too seem to be wishing my life away and ‘living’ from one treatment to the next, but I suppose that’s only natural. I had cold cap for 2 1/2 hours during first FEC, then chickened out. After 3 FEC and 1TAX still have a covering, but am expecting it to all drop out any minute. How long was it after having TAX til all hair fell out? just to get me prepared!! Hope the weekend is good to you all and you manage to kick the se’s into touch!! My next TAX is due on 7th March, anyone else around that date?
Hi Sand,
I hated water too. I quite liked drinking soup out of a mug because it felt comforting and I liked the texture. Water was ‘too dry’. Does that make sense? Other than that I drank fruit juice-but then got horrible heartburn. Ice lollies helped for a bit too.
I found rinsing with salt water helped a bit.
When my taste buds resolved it happened very quickly.
Good luck. I found the moth mouth to be the most horrible side effect of all (along with maybe baldiness but you kind of forget about that).
Bad, bad day on the Chemo ward yesterday - no swans, not even a seagull…
‘Fo Agonistes’: today’s post on chemonights.blogspot.co.uk/
Hi Maire thanx for that, I’ll give soup a go. Vimto not too bad, also had it with warm water, taking me back down memory lane to a small cafe by the bus stop just off the front in Morecambe!! Not been there for some time, as live in Somerset now. Did try Baileys tonight, but yuuk. Maybe I won’t become an alcoholic after all!!! ha ha. How long after treatment finished til you got your taste buds back?
Hi, Soooo sorry that you’ve been having such a bad time. Have they not given you EMEND for the sickness, I found it brilliant, makes you constipated, but forewarned is forearmed so to speak. At the hospital I go to, they give you a heat pad to put on your arm whilst having the treatment, also the one and only time I had the dreaded ‘cold cap’ they gave me a heat pad for my stomach plus a blanket wrapped round me! The only time I’ve had hassle was the day before my first TAX/Herceptin, I went to see onc and asked why I hadn’t been given steroids to take before treatment, when they brought my paperwork they had me down for another FEC!! So I ended up staying on eating biscuits etc and having a drink in order to take steroids, this was 2.15 in the afternoon, and I had to take another four before I went to bed, needless to say didn’t get much sleep. But all in all my experience has been tons better than yours. Does your hospital not have a patient liasion office? If it has then I’d create havoc til they got it right, it’s bad enough going through this sh…t without the added pressure you’re going through. Good luck with it all, and I hope the se’s improve. lol
Sand , I had severe pain on Tax. I thought I was being tortured. The amount of pain people get varies so much that they often send you away with paracetomol and then wait to see if you complain. Complain! I needed Codeine in the day and Tramadol at night. Both will make you constipated so get the Movicol ready. Tramadol is very strong and can make you feel a bit weird so just take 1 initially not 2. I found it better to take 1, then if I was awake and in pain a few hours later then take another. As for the mouth and taste, I found milkshakes and yoghurt drinks were good and the texture is pleasant. You can also try putting a slice of lemon/lime in water to improve the taste, but not everyone likes that. I really hated slimy, thrushy, tasteless mouth. Not being able to enjoy Baileys is an outrage. I do think the Human Rights Commission should be looking into Tax.
Todays the day of the nephew’s engagement party and the glamorous stay at junction 15. My armpit and Mx area hurt, I can’t wear a bra and I am exhausted from not being able to sleep properly (and from having cancer treatment for a year). Does anyone think it would be unreasonable if I sit in the corner wrapped in a blanket? Soooo hard to rise above it all and pretend to be cheery. After all, it is his engagement party, and not actually all about me. Will do my best, at least it is one of those “normal” things I am always wanting to do, so I will not take my blanket and I will enjoy myself. At least I will until I fall asleep…
_ Hi _ Sand. I too had my 1st Taxotere on Valentines Day. Previously had 3 x EC which, although were unpleasant, compared to TAX, actually were a breeze! I had a slight reaction to the Tax during administration but that was sorted out quickly. Felt ok rest of the day and also the following day wasn’t bad either - DN came to show me how to do injections to boost WBC. However, between days 3-6 (Sat - Tues) I felt dreadful, days 5 & 6 the pain was almost unbearable. I could barely get out of bed, Tramadol didn’t touch it and I hurt absolutely everywhere throughout my entire body, like nothing I’ve ever experienced in my life - it truly was horrendous. I wasn’t sure whether I was going to implode, explode or sponaneously combust!! Once the injections stopped I started to feel a bit better, but my insides were fried, I had nasty oral thrush, even though took meds for it, everything tasted like the sewer, mouth ulcers, diarrhea, tingling fingers and toes, painful nails… urgh it’s been vile. The only positive thing has been I haven’t been sick with either chemo drugs and only had minimal nausea with EC!
Have doubled up on my lansoprazole to help with the acid stomach and so I can eat fresh fruit - pineapple is great because I can taste it along with beetroot (boiled), fish, ginger biscuits and salty snacks as well as spicy things like curry - can’t taste much else I’m afraid, but doesn’t stop me eating them because I feel hungry almost all the time, so will no doubt be the size of a house by the end of this. Tea and coffee are yukky at the moment but I am liking hot chocolate and fresh fruit juice as well as ginger beer 
I didn’t do the cold cap and shaved my hair really short once it started falling out about 2 weeks into chemo #1. It hasn’t completely gone and I have a fine covering of silver/blonde ‘baby hair’ all over my scalp but don’t know if the Tax will see that off. Eyebrows and eyelashes have thinned, armpit hair negligible, pubic hair 70% gone but leg hair growing back!
As for my teeth, I’ve done ok so far but have been using difflam mouthwash morning and night as I am prone to ulcers and Corsdyl daily mouthwash inbetween and also clean my teeth with a baby toothbrush 4 x a day as well as my tongue (with a different brush) morning and night.
Everyone is having different experiences and side effects, but it really helps to read how we are all dealing with things and pulling through one way or another. I have laughed at the humour, cried for the suffering and admired the strength of all of the ladies on this forum and wish I could hug them all xxx
Cybele - outraged on your behalf about the PICC fiasco. Are they going to scan it now, before they need to use it again? Insist on investigations being booked in now for later when you feel well enough, but before the next chemo.
Please can you let me know how the Omeprazole helps or not with the toxic stomach. The Oncology pharmacist thought that what I needed was more anti-sickness not more Omeprazole. I have stopped it again as it interferes with my sleep and my vision, but I am intending to start it the day before chemo to see if it does help with the dead thing that inhabits my stomach after chemo. I can’t sleep then anyway and seeing seems piontless. If it is better I won’t know if it is the Omeprazole or the extra anti-sickness. I don’t think you changed any other of your drugs?
x
Cress - thanks, have sent copy of that blog post to the Head of Cancer Nursing at the Imperial Healthcare Trust, who is a reader of the blog and whom I have met recently - she told me to get in touch with her if I had any more problems, so hopefully she will come down on them like a ton of bricks.
Re the Omeprazole, i haven’t changed any of my other medications, so as soon as the steroids wear off , which is when the toxic stomach starts to kick in - ie mon/tues, I’ll know whether the Omeprazole is working or not. Fingers crossed - It was just so hideous last time.
Sand - yes, I have Emend intravenously before the chemo, plus every other anti-emetic there is, but I still get very nauseous. But with the drugs it’s more or less bearable. Was interested by what you said about heat pad etc for cold cap - at my hospital they don’t offer you anything at all - I will ask them next time!
Hi Sand
I had tax x 3 first then i had the first of my fec yesterday. got to have 3 of those too. my hair fell out on day 10 after tax 1.
drinking coffee is a no no but tea (black) is tolerable. cannot abide milk - but can stomach soya milk. my favourite drink is the cordials . elderflower, ginger, and hot red berry are lovely.
Cress - njoy something normal!
Hamley - surely if youre on chemo it kills breast cancer wherever it is so your 2nd lump will be being treated IF its cancer.
QD
QD - very happy to hear that the blog cheered you up a bit - I have to say that one week delay before FEC4 really was a blessing in disguise - feeling normal again reminded that there is life after this hell, that chemo will not last for ever. Sometimes when you’re in the middle of it, it’s very hard to remember that.
2 weeks ago I was on the verge of losing it, I was so down - but that extra week gave me the time to recover some mental as well as physical strength.
Hope your dose of poison yesterday isn’t hitting you too hard BIG HUG xxx
Cress - am amazed you’ve got the strength to go partying at all ,and am most impressed by your fortitude. I’m basically just avoiding all social engagements at the moment, partly because of fear of another infection, partly because at this point in my life I cannot bear the thought of having to make cheerful social conversation with strangers…or anybody, really.
cybele- just read your blog. its awful (not your blog, thats fab - the exerience you encountered). hopefully the head of cancer nursing will be able to kiss some a@@ ! x
Cybele - glad to hear you finally got your 4th dose of poison albeit not without a certain amount of stress and swanless drama. Hope the sickness is under control this time.
Cress - I was given Omprazole from day one as a matter of course. When I found that my stomach was starting to play up during the latter part of the day my dose was increased so that I take 20 mg am, and 20 mg early evening. Not had a bit of trouble since. Enjoy your day of normality although personally I’m in Cybele’s camp. I avoid social occasions so that I’m not forced to make polite conversations and small talk. Thinking about auditioning for the next series of “Grumpy Old Women” as I feel I have a lot to offer.
I’m 4 days past the 5th FEC with surprising few side effects at the moment apart from dehydration. I find it so difficult to keep drinking water and tea and coffee seems to make the dehydration worse. Thrush under control this time with Fluconzole, no sickness this time but still have constipation to deal with. Oh the joys of it all!!!