lol at chemo brain - I am having so many senior moments at the moment - ironic as I’m not doing any more chemo. I am forever wandering round the house wondering what I am doing there, or going upstairs and forgetting why etc. and it’s not just occasionally but all the time! It must be either the lack of oestrogen to my brain, the effects of the antidepressants (which aren’t working) or early onset dementia! God help me when I’m 60 (if I ever get that far). And the worst thing is I can’t blame it on the chemo anymore!
I made all my christmas pressies earlier this autumn, as I have no money I made bramble and damson jams, sloe gin and blackberry whisky and everyone is getting a little home made hamper. Not sure it’ll impress the kids too much lol, I might have to go shopping for them.
I would have thought ‘chase the cheese’ might be just the sort of game for those of us who are brain-impaired. I think I could cope with that, probably don’t even need the cat!
I’ll be interested to hear your feedback from rads as that’s the next thing I have to have done but not till Jan.
Oh and I had my hickman line out yesterday and it really wasn’t such a big deal, just as they said. The radiologist cut out the cuff and then just pulled it all out, and I didn’t bleed to death on the table as feared. Apparently the cut in the vein doesn’t even leak - amazing! The best thing is that there were two students in the room with me and the radiologist gave them a constant interrogation as to which vein it went into, which part of the heart did what etc. They were really struggling to answer and I kept piping up “I know, I know” just like the class swot. It certainly took my mind off things.
Off to a Christmas dinner tonight, not sure I can squeeze into any posh clothes, will probably fall asleep due to the lack of sleep I’ve had recently, can’t really drink alcohol and have no appetite due to the antidepressants (great way to lose the excess weight) but still nice to get out of the house and have something interesting to do.
Hee hee hee - you’re so funny! I’m aspiring to be as good as you at the ol chemo brain thing. One of the reasons I made a post this morning was to say that I had spoken too soon about the hot flushes. The last two nights have been terrible, and I really regret saying how the acupuncture had helped. I only realised that I hadn’t mentioned it when I had shut down the computer! Doh! I think you should always be able to blame it on the chemo, after all it has to have its uses!
The radiology appointment went well, although the consultant is a bit…er gobby? Initially he was just a bit too familiar for my liking but told me all I need to know. As I work in the NHS, he eventually established a rapport with me which was more professional to professional, so I left happier than I was in the first ten minutes of our relationship!
The aim of the rads is to reduce the chance of recurrence in the breast in the future. He explained that if I only had surgery and chemo there is a 30% chance of a recurrence, however, by following it up with radiology this decreases to between 3 and 5% He explained that copious amounts of aqueous cream and massage should reduce any swelling that might occur, and will reduce the possibility of the breast tissue becoming hard. There is a chance by the end that my skin will be a little ‘sunburned’ but other than that there are NO SIDE EFFECTS - how wonderful
Your christmas presents sound delightful - lovely to think of someone making there own in this day and age.
Will send you a chase the cheese - LOL
Lotsalove everyone, hope you’re getting on just fine
xxx
Back from 1st Tax. Did not have an alergic reaction thank goodness. Came home armed with assortment of tablets,Difflam, Nyastatin, tum injections enough to start my own pharmacy. Feel tired as did not sleep last night due to steroids also a bit sickly (took my emend so hoping that works) Chemo nurse told me to go home and paint my nails in the darkest colour I have to help prevent loosing my nails, which I have done. Just waiting for the side effects to kick in, any ideas when and what to expect. Hope everyone is keeping ok and side effects are not giving too much grief.
Love to all
Karenxxx
Pleased that today went well for you… here’s hoping that the SE’s are bearable too!! What’s the idea with the nail polish?? Is that the same with FEC drugs…or does that not have the same effect on finger nails!!! Oh well, pamper yourself and give yourself a mini manicure.
Apparently one of the side effects of Tax is the possibility of loosing your nails. They told me to paint them in the darkest colour to prevent ultra violet light getting on them as this reacts with the chemo. Havent heard of this being a problem with Fec.
Hope you are coping ok with your treatment.
Love Karen xx
That’s strange… I’m pleased that the nurses have forwarned you and told you what to do to minimise the risk. Keep the polish on and I hope it works for you.
I’m doing well so far… halfway through 6 FEC. no 4 due next Weds, I hate this bit… I am feeling perfectly fine now, carrying on as normal- but knowing that next week it all starts again… Hoping to be over the SE’s by Christmas day though… with my 3 boys there’ll be no time for feeling tired!!!
Hi Ladies,
I too didnt sleep much night before my TAX on Tuesday.I can honestly say I have had no nausea as yet in fact just come back from chinese meal with family. Felt a little dizzy today but think I was overdoing it, trying to get so much done before aches and pains kick in.
I too was told about the nails but as my nails are rubbish anyway I can’t say I am too worried. I have heard that your fingers and nails can feel very sensitive and that does worry me a little as I do a lot of crafting and still have some pressies to finish.
Don’t think I shall sleep too good tonight as I have only just had my steroids so this could be fun. May sit up and write Xmas cards, another job to do.
Love to you all, keep smiling,
Jane xx
Well, Day 8 after my 1st Tax & I’m almost back to normal (whatever that is! LOL)
I had Tax last Thursday & my SE’s started to kick in late on the Sunday night & the fatigue was overwhelming on the Monday & Tuesday, uncomfortable tongue & throat, no taste!, Dodgey Bowels (as warned by my chemo nurse) from the Wednesday & then the bit that just won’t go away…painful/sensitive fingers /nails!
I thought it was easing up a bit until I started to type…but no…still sore!
I’ve cut my nails short & painted them a very dark plummy purple sparkly type colour…which looks very tarty on a 35 year old! LOL
I’m not sure exactly when it started, but this has been the most difficult for me. I couldn’t even help my kids open their advent calendars the other day & last night I was in pain trying to pick the price label off a toy! I certainly hope it doesn’t last too long 'cause I have a huge Lego Police station to build for Santa coming!!
Apart from the nail thing I’ve found Tax a lot more bearable than FEC. I’m relieved the sickness is over!! WOOHOO!!..and my hair is growing fast…I have a whole 1cm of fluffy fuzz on my noggin!! I’m just hoping it doesn’t desert me again in a week or so! I want to keep it :o)
Oh, the only other thing I’ve found on Tax is that I actually feel as if it’s doing something! Does anyone else have the wee sharp sensations? I quite often get a fleeting flash across my mx scar or under my arm…I know it’s just part of the SE’s, but I’m actually finding it quite reassuring…like it’s attacking any wee random nasties that think they can hide! LOL…that probably makes me sound like a weirdo!! PMSL…
Loocie, thanks for the info on rads. I don’t ask any %'s or anything although I have read than Chemo kills 90% of any random cells, so I’m hoping that rads’ll pick up the remaining 10%!!
30% chance of recurrance is a scary figure isn’t it? Definately worth a little sunburn & fatigue to reduce it right down. I’ve always wanted a tattoo, but am too chicken…rads is my chance to try it out! LOL…my Auntie showed me her rads tattoo’s & they are absolutely miniscule. I wonder what they do for rads to your neck area…I’m assuming they won’t tattoo that too! I’d look like a dot to dot puzzle with wee tats on my chest, under my arm & on my neck! PMSL…attractive!
Anyway, good luck to all having Chemo soon & hope everyones side effects are minimal!
Have any of the ladies who have been on here from the start looked back to the posts when we all started??
Wow…we’ve all come so far!!
Wonder how Reemichick is getting on & Daisyleaf…they posted at the beginning along with another couple of ladies who haven’t posted again…hope they are doing as well as we are xx
Hi Hayz - I’m pleased you mentioned the odd feelings you’re getting across your mx scar. When I was having the joint pain, my right boob (my toxic titty) started to get really painful and I have also developed some numbness that side too. I wondered whether I was imagining it and had planned to ask about it on Monday when I go back for my second Tax, however, you’ve answered my query!
Yeah, I wonder what happened to the Remichick and Daisyleaf?
I haven’t been told anything about painting my nails? I read that they can turn black and fall off, but didn’t know it is possible to help reduce this by painting them. Will see if I can dig out a galm purle, and ask on Monday when I’m being swamped.
Didnt sleep again last night but think that is due to the steroids. Last lot this afternoon so hopefully will get some sleep tomorrow. Is the muscle and joint pain unbearable? The nail pain sounds horrid as well. Painted my nails a lovely deep plum colour so hoping that will help. (can but try) Hows all the christmas preparations going? Ive wrote and sent the cards, got some presents but not wrapped and some of the decos are up so Im getting there. Hoping I will be side effect free crimbo day. My next lot of Tax is on New Years Eve (thats one I wont forget). Hayz did you take anything for the dodgy bowels or did it just stop on its own? What did you take for the sore mouth and throat? Hope you dont mind me asking but I can then be prepared should I get the same side effects.
Take care all, not long now!
Lots of love Karen xxx
Hi girls,
Karen, I know all about the not sleeping due to steroids, my onc prescribed mild sleeping tablets and boy do they work. Whereas before I was lying there until 4 in the morning, now one tablet and I am asleep within half an hour. I’ve left them upstairs so will get the name for you.
The achings are starting, at the moment just feel like fluey aches but not too bad yet.
My next TAX is also due New Years Eve so we can celebrate together!!
It’ll be a cheap night out anyway.
I have had a bit of odd pelvic pain they were sharp but didn’t last for long and yes a few aches in my mx and gland area. Spooky.
Well keep smiling, have a good weekend and love to you all,
Jane xx
Have you had any problems with mouth, sore throat or dodgy bowels yet? I feel like im waiting for a time bomb to go off in my body. Really hope your side effects are manageable. Not looking forward to another sleepless night, Im also suffering from hot flushes which are awfull. I asked my oncologist if I could take anything to help with them but as I have posted before, he is not the most helpfull or forthcoming so no help there!
Hope you have a good weekend and side effects dont give you too much trouble.
Love Karen xx
I didn’t take anything for the sore throat or tongue or the dodgey bowels…they weren’t that bad. My throat & tongue did feel very swollen & sore and it was quite painful to eat & drink for a couple of days, but it did pass. I think I have a high pain threshold & tend to just wait until these things start to get better rather than take meds if I can avoid it.
The dodgey bowels lasted the 2 days the chemo nurse said they would, but it wasn’t full on nastiness…and I didn’t want to take immodium only to send them the other way! LOL
As for the muscle & joint pain, I had exceptionally little. Only one evening of twinges across my back, but that was me forgetting to take my meds on time!! I did ask for painkillers from my onc up front, as I had been warned by the nurses that the pain could be quite intense & after reading Loocie & Lynn’s experiences I was definately going to ask for them! She was great & prescribed me Gabapentin (sp?).
I had a split pelvis during my last 2 pregnancies (crutches from 16wks!) & I still get twinges & knew that the pain would all be focused on that area, also my eldest son has a once in a lifeime day at football tomorrow that he didn’t want me to miss, so that’s why I opted to ask for the painkillers instead of seeing how the first cycle went. I know that usually the pain can be controlled with Co-Codomol & Ibruprofen, but I can’t take these due to a blood disorder, so I needed something on prescription.
Loocie, no one said anything to me about painting your nails either, I’ve just done it based on what other ladies have said on the forums…and after sitting next to a lady who had just finished Tax on the look good feel better workshop and spotting her nails…I have to say anything is worth a try!! OMG!! Eugh!
my breast surgeon didn’t give me the stats for my rads but she was very definitive when she said that the risk of not having rads was far too high to contemplate - I presume it’s cos I had a lumpectomy so may well be little bits left behind. I have been told by all that rads is a doddle compared to chemo.
Got an awful cold today, add that to the hot flushes and I’m feeling pretty grim - weird isn’t it that I managed to avoid most bugs while on chemo and as soon as I come off it, other things hit.
I took the dressing off the hole where the hickman line was - just to be nosy lol. Honestly some of these medics don’t have a clue how to be neat - it looks like something a five year old would do with a large needle and thick cotton. Huge black stitches - somehow I don’t think it’s going to fade to nothing - right on my cleavage with two whopping great marks - lovely. Almost tempted to rip them out and re stitch it myself, sure I’d do a better job. After the breast surgeon made such a neat job with the scar around my nipple and some meat-handed radiologist stamps his mark on the other boob. Lol I’m sure I’ve got worse things to worry about - the OH said I should get a tattoo - sure that’s going to look good on a 43 year old! Any suggestions as to what I should have?
Lol also at toxic titty - that is such a great phrase, I will remember to use that one!
Daisyleaf posts on some of the other forums - I come across her from time to time but not seen Reemichick.
And yes, it is amazing how far we’ve come - we’ve been doing this for over three months now, and the time has really flown, admittedly one day at a time and not very pleasantly. I can almost see the end.
Hello its 3.30 am and not sleeping at all - sleeping pills please - the sweats with tax are worse than wth Fec for me - 3 days now - had a really bad day today - i think i am a bit allergic to something - bright red face and neck - know what you mean about scar pains and in the lumpectomy area - sharp twinges.
The dry mouth is only relieved by pineapple juice.
I have two days of 2 steroids aday to help bring me down but today was like the first FEC with sterois - cryng - weeping - negative thoughts. had to ring my 86 year old mother in law to come and help change my stinky bedding - washed pillows and quilt was wet too - the weats are the pits. Other half has a cold so avoiding him like the plague taking turns to sleep in bed - he is dragging himself to work though.
Only one injection on day two - neulast - instead of the 6 granocytes.
The new chemo unit i have signed up with at local small private hospital has given me a free sample of a product from France for the nails - its called Evonail and is made from spring water - some sort of manganese - it is clear and like a nail polish which you apply to nails and surrounding skin - see how i get on,
Took emend as I felt sick first day and now have a hard feeling in my tummy - want to eat but dont know what - we cooked up a beef stew on wed nigt and finished it tonight - stopped craving chocolate now though !!!
I have put on 10 lbs in last week or so. hands feel abit red and tingly- hate this bloody chemical illness.
Hope its doing wha it is supposed to do - I think 90% is a bit of sales spiel - why does it still come back in some people?
Just so fed up with being ill - i have only had about one good 'green light ’ week in the 3 months !!! Plenty of amber but lots of RED - just wish i could sleep it all off.
Sorry to be on a downer but I will be up again in a few days and back to some sort of life i know - just hate this crap - i dont cry much so today was odd.
Sorry to be a pooper hope things lift for all of us soon xxxxx LynB x
Decided to take the plunge and change my profile pic to how I look now. Bit scary really, but feeling bold!
Hi Lynn, feeling your pain and can relate to everything you say. I hope you managed to get to sleep after making your post?
Isn’t the feeling in your belly weird? I’ve tried to explain what it is like and the closest I came was to describe it as having a breeze block where your guts should be? It really is strange and I’m going to ask about it on Monday. The district nurse recommended taking the probiotic drinks and yogs, which I have done, and has helped although I still have a child size appetite. This means I am deffinitely broken as I usually eat three times as much as anyone else! I still can’t tast a blooming thing and can’t wait for my mouth to get back to normal, pleeeeeeeeeeeeezzzzzzzzze!
Like you I am fed up with feeling grotty, and am bursting to start doing the things I know and love…bring it on! Goodness knows how I manage to keep smiling, I think I may be a tad simple - LOL
Hope that you are feeling perkier today and that things soon start to brighten up for you and anyone else that is feeling chemoified!
Hi girls,
TAX has hit me at last. Last night when I went to bed my tongue was really sore like it had been skinned, fluey aches, horrendous heartburn and griping pains. Got up today feeling rather uncomfortable, fingers really sore, can’t even take the tablets out the packets!! Not taking any meds for the pains just letting them take their course. I have to say I would rather the pain than the nausea, that really did get to me.
Have not any dodgey bowels as yet, that will be quite a change from the usual constipation.
Karen, try not to worry too much, I have still got on with jobs round the house and the usual things that need to be done. I did get some paracetamol and codeine in case but have not taken them as yet. Also started the antibiotics today so feel like I am taking enough.
Keep smiling girls, I def am!!!
Love to you all,
Jane xx
My temp has been all over the place today, but no higher than 37.7. Eventually managed to get seen by the out of hours doc who took some convincing that I actually feel fine other than a slightly inflamed throat, but gave me the full mot & blood tests…now he wants to have me admitted to a hospital in Edinburgh…not even the one 2 minutes from where I live!!
I’ve asked that he speaks to the on call onc registrar! Surely I don’t need to be taking up a hospital bed!! I feel fine & my temp is completely normal now!! OMG! I have everything crossed that I can get out of this…I so don’t want to be away from my family!
This is weird Hayz you say you feel ok but they want you in hospital ??? Temp a bit erratic though love.
I am feeling sooooooooooo baaaaaaaaaaaaad but temp not going over 37. Rang chemo nurse yesterday morning and she said all normal if temp ok???
Constant hot sweats - itching arms and legs - weeping - stomach breeze block i recognise completely Loocie. But I eat to settle the nausea and then i am tooo full - had massive heartburn yesterday but took meds this morning. Cannot stand sleeping in cold sweat and shivers. Head in a constant spin cannot manage to do anything physical and just about type this!
