This Tax is unbelievable I,ve never felt so ill in my life !!! The bone pain jee wizz I,ve had 4 kids and that didn,t come close to this. Last week I was in so much pain lying in bed unable to sleep I didnt know what to do with myself when I saw this bright white light ..... Thought dear god this is it I,m a gonna then realised it was the full moon !!!!!!!!! You,ve got to laugh
Were getting there guys hang on in there It might not feel like it WE CAN DO THIS
KEEP SPARKLING xx
Well I now take back every word I said a few posts back. I've just had my 4th FEC and for the first time I was a sick as the proverbial dog. Threw up all of the first evening and noticed that I wasn't passing urine very much. Fortunately the urine output increased during the night but was still throwing up in the morning. Rang the chemo nurse who got a prescription put out for another anti-emetic which worked like a dream I'm glad to say. I thought that I'd been getting away with things to easily!!!!!
Sorry I've not been around, sometimes I prefer to try to forget about cancer and obviously coming here is the opposite of that.
My 5th of 6 chemo cycles starts tomorrow and my 3-weeks of radiotherapy is now set for the 18th of March.
I can do this now, wasn't sure for such a while but the light at the end of the tunnel is clear.
HI Everyone, I had my first tax yesterday and so far apart from a scuzzy mouth and flushed cheeks I'm feeling ok. Slept all night which is a novelty and compared to how I usually feel the day after fec I'm doing ok. Can anyone tell me whether its wishful thinking to hope it stays like this or that the s**t bit will kick in later as I have heard that tax is really awful.
hope your all doing ok xx
You rant away love! That's what we're here for, to support each other through this awful journey.
I've been feeling better today, my red rash on my hands is now just peeling skin. Slapping on loads of moisturiser.
Have booked a manicure for Friday as I need to treat myself - can you plan a treat for yourself to make up for missing the chemo? If you get your PICC on Tues, when are they going to do the next chemo? You'll be on the same week as Pascal and Shazza and I.
Sending you a virtual hug.
Love from Jen x
omg i am sick of this now, cant have chemo today as my veins are bashed to bits so off to another hospital on tues so they can add a picc line for the remainder of my chemo and 6 weeks of bloody clexane injections, fucking hate cancer, its fucking shit. !!!!!!! sorry for the swearing rant, im so fed up now. just want it all to end.
Pascal - good news about your tumour.
Jelly mould - double the amount of Tax? No wonder you were so poorly.
A friend who has a habit of telling it 'as it is' came to visit yesterday. She told me I looked like s***. Great. But I am sure I have read somewhere that the worse thing is when you feel like s***, and someone tells you you look great, they are obviously lying and therefore it makes it worse. My face does look bloated and patchy though.
My se progress is that my hands and feet no longer hurt, but I developed a red rash on my hands. Went to see my lovely GP and he has given me a streroid cream for my hands, together with some Dermol cream to use as a moisturiser. I told him I had huge stock of E45 cream as a friend recommneded slapping it all over the mx for 2 weeks before the rads start. He told me not to use it as it contains lanolin. He told me to come back and get some more Dermol from him instead. I remembered using it on my son's excezma when he was a baby. Has anyone else heard that about E45?
I also have more Nystatin as the oral thrush has come back.
On the plus side, my 14 year old son now does my filgastin injections to save my friend visitng every day. I'm well chuffed with him!
Col - thanks for the ditties - excellent work!
For me the side effects were slightly different. FEC 1 I was only slightly nauseous; FEC 2 I was very sick and on FEC they gave me different anti-nausea tablets so I was back to just being nauseous. Also, on FEC 1 I had a very sore mouth which I haven't had since (though have oral thrush the last 2 times) and this time unlike the others on FEC 3 I was completely wiped out and exhausted for 3-4 days where the same for every fec. I am hoping that it won't get any worse than this.
I am also doing the cold cap and it is truly HORRID. I dread the chemo because of it, but I still have my hair (albeit much thinner on top and a couple of bald spots which I can cover up. I am not sure if I will continue with it because if I lose much more hair I don't think the pain is worth the gain. Only time will tell....
hi sarahnippress yes for me the side effects where the same for every fec.
Hi Sarahnipress Having my 4th Fec on Monday and for me the Se's have all been the same but I think I've been fairly lucky though. No sickness or even any nausea. Steroids made me jittery and kept me awake all night so after the first session my oncologist, who has a consultation with me two days before each Fec, took me off steroids completely and I've not had a problem sleeping since. Worst side effects for me has been sore eyes, and when I read, watch TV or use the computer begin to look like Dracula! First two Fecs got a bit of oral thrush which I got rid of myself but the 3rd Fec gave me a really bad dose of oral thrush and I had to go to the doctors for medication. Saw my oncologist yesterday and she is giving my enough Nystatin thrush medication to use from day one and also to use as a mouthwash and gargle. Indigestion was a problem almost from the beginning and I was given Omprazole but this didn't seem to work all day so Onc. increased the dose to double and now I'm fine. Do drink LOADS of water to stop cystitis. Start the day before treatment and continue for the next 36 hours. Drinking this much stopped mine. I haven't felt at all tired or ill and still manage to give my three collies two hours walking a day. I'm using the cold cap and halfway through this treatment I still have a full, albeit thinner, covering of hair. Actually I think I worry so much about my hair and the right products to use on it that I forget about the other side effects. Desperately hoping it hangs on in there for the next three sessions. It's a state of mind I think with me. All the time I have hair I fee normal and I haven't had to tell people that I have cancer. If it now all drops out I'll probably hibernate and become a recluse.
Hello Sparklers, I have just popped across from the January Jems with a couple of questions if you don't mind??
I just wondered if your side effects seemed to follow the same pattern after each FEC or if they were different each time? I have had one FEC and the SE have been bearable so I'm hoping that you will say that they stay the same!! I can take the truth though if not!
Also Col123, you mention in your very good ditty that you are using the cold cap. Has it been successful? I am using but it is horrible.
Thanks and keep being strong Sparklers.
had the tax today just feel like a walking zombie no se yet putting it all down to lack of sleep mind have to start giving my self the injections that is going to take some something in me but it has to be done and no one else will do it for me.Looking on the bright side 4 chemos down 2 to go !!!!!
Keep strong we are nearly there
love and hugs
Tax for me has been ok a couple of sofa days on day 4/5 and then the usual aches but very very doable so don't worry before it happens it's not all bad on Tax. Hope I haven't jinxed it for either of us !
Wendy x x
Col - lovely versus; they put a smile on my face (so rare at the moment!!!).
Yvonne - good luck today with TAX. Remember everyone reacts differently and it might not be so bad
Pascal - FAB NEWS. You go girl!!!! Hopefully everyone else waiting for similar news will also get such positive feedback. These guys really know what they are doing, and the success rate is amazing....so keep it up everyone!
Glad to see you back Jelly xx
Col love them cheered me up:)
Got my first round of tax in just over an hour really not looking forward to it not slept for a couple of days stupid steriods:(
Stay strong and I feels better soon xxx
Great news pascal:-) i anyone had their steroid dose lowered on tax?
My insomnia is destroying me and wondering if onc will lower my dose. Also I have read about bone and liver scans etc- I won't get any scans my onc said I'm wondering what other people get? I might just go private for scans but not sure what to ask for so wondered what scans others having.
i also think its time I saw a counsellor... A job to organise today I think... GrgGrghhhh. I feel so rotten still I just want to hide in the corner and comr out in 12 weeks when this part is over. I wonder how long until we start to feel better after last chemo? I think I will be a broken women by the end!
Good news! Went for an ultrasound today and saw my surgeon. My tumour has shrunk from 37mm to 22mm, and I still have 2 chemos to go. My surgery is due end of March but I have been told that it will be a lumpectomy and not a masectomy as first thought.
And my hair seems to be growing back!
Lots of love
so rubbish that lots of sparklers are having a tough time. I haven't posted ditties fir a while as they got quite dark and definitely wouldn't make anybody laugh!! I've posted below the least depressing of the latest ones. I'm sure they'll pick up as my mood does.
Love to all. col xxxxxxxx
This bloody FEC is a pain in the neck,
And I'm told with tax there'll be no need to wax,
So many SEs and with the coldcap you'll freeze,
If you're not being sick then it's an infected picc,
You worry about when to take your pills and your level of neutrophils,
From a horrible taste to an expanding waist,
From an MRI that made me cry,
To a CT that made me feel like I'd done a wee,
From talk of a clearance to a faded appearance,
If it's not hot flushes then it's news that crushes,
There'll be surgery, rads and tamoxifen for 5 years or maybe 10,
Because of these lymph nodes I don't know how it bodes,
But I'm halfway through now and will get there somehow,
I'm sick of sympathetic looks - this cancer really sucks,
And I just want to be 'me' again but I can't help wondering when.
Jingle bells, dodgy cells, I feel like running away,
It's not much fun this chemo ride but a very small price to pay - hey!
Dashing through the woe, worrying every day, over the hurdles we go, crashing along the way. They tell you it will sting, making you feel shite, how crap it is to fight this fight when you feel a dreadful sight - hey!
Chemo and cabbage, chemo and cabbage,
Go together like a horse and carriage,
But they make you farty,
So nobody wants you at their party!
Silent night, holy night, lack of sleep just makes me feel shite,
These bloody steroids are keeping me awake,
Oh good God just give me a break,
Then I'll sleep in heavenly peace, sleep in heavenly peace.
Silent night, holy night, with the lack of sleep I look a right sight,
I'll try a few tipples from my newly installed bar,
Then I might get some sleep - oh hallelujah,
Right the way through til dawn, right the way through til dawn.
These bloody steroids are doing my head in,
I just want to sleep but in my head there's a din,
From ringing ears to persistent fears,
I think I might resort to the gin.
I could try nytol, night nurse or even lorazipam,
But I don't have any in - damn and double damn,
It's a battle with my mind but the steroids aren't being kind,
Think I'll get up and have a sandwich - now cheese or ham?
oh God it's tricky when you feel so low,
This tax is shit and I've got a sore toe,
But there'll be good times ahead you mark my words,
Birmingham will be fun with such a mad bunch of birds.
In the middle of chemo the days can be dark,
And I can feel myself turning into a nark,
But let's be brave and bold and make a big stance,
And if all that fails we can always try a merkin dance!
How is everyone doing? I still feel rough although better than last week. I can't believe next treatment coming round so quickly next week. I hope I have some good days soon. What do people use for mouth I still can't taste anything.. I also have sores all round my mouth...Grghhhh tax is horrible:-(
I had my 1st TAX and Herceptin last Thursday. Haven't felt sick at all, which is wonderful, I was very tired over the weekend but seem to be coming round now. Sunday night my joints, especially my hips were really aching, even my feet! I woke up Yesterday though and felt much better. My mouth has been quite sore but the Difflam helps. I haven't had nose bleeds but tiny bit of blood every now and then from my nose.
And my hair seems to be growing back, may be wishful thinking but it is a bit bristley.
Tomorrow I am off to see my consultant to see how I am getting on and an ultrasound I think. I haven't seem him since starting chemo so I am a bit nervous.
Lovely to hear from you jellymould but so sorry that you have been suffering with the Tax. Make sure you keep up the antibiotics and clexane to clear that clot. I think I would have been the same and wanted to come home, I think I recover better at home and you probably do too. Have they given you any cream for the rash? I know what you mean about looking like a cancer patient, I never look at myself in the mirror without a hat or wig as I don't want to see myself as a cancer patient. But by the end of the year, we will be better, our hair will have grown back and we won't look like cancer patients any more.
Kazacks - my aches after Tax are mainly nails, ankles and wrists, and have upped the Difflam for the bad mouth. Nothing tastes good at the moment, Eating lots of ice cream. Hope your aches are not too bad.
Supersusan - hope you don't have to have the blood transfusion, but if you do, it might help make you feel better.
Lucy - hope you are feeling better. I have not been out since Thu because of the snow, but do feel like staying in bed all day. I am trying to get dressed each day as that still counts as an achievement.
Santa's helper - hope your FEC was Ok yesterday.
Col - hope your temperature stayed down at the weekend.
Deeh - not managing to do the injections myself as I am too chicken. My friend, a former nurse who lives down the road, visits me each evening to inject me. Yesterday she showed my 14 year old son how to do them so he might give it a go this evening. I have them in my hip at the back so I don't see the needle going in.
Pascal - any side effects after your Tax on Thurs?
Love to all. Keep sparkling, keep strong!
Great to hear from you Jelly (been so worried about you)!! Welcome back to the land of the living; just concentrate now on getting stronger and cracking through your remaining treatments.
Wish I was motoring through the FEC treatments. I had my 3rd one last Thursday and have spent the last 4 days feeling like I was in a black hole barely able to crawl out of it (so knocked out and exhaused). Anyway, today thankfully I feel somewhat more normal, so once I am back on my feet I will start my countdown for my last 3 FEC treatments.
phew!!!!!!!!! jelly so glad to hear from you but obviously not your news. Glad you're now home and just keep a careful eye on that temp. Been pretty rough myself for a few days. feel little better today so hopefully over the worst - fingers crossed.
kasacks - dont panic - I know alot of people who have found tax alot easier than fec. fingers crossed you'll be ok.
Love to all. col xxxx
ps do you know about the younger breast cancer network on Facebook? it's also a really useful place to get support and it's secret so totally private to its members.
hi guys thank you all for the kind words and worry, rang a&e monday night, was seen and just given piriton for the itchy skin, no bloods taken and they said my temp had dropped so i was fine, got up tuesday morning, couldn;t even swallow my own spit, temp was 37.6 and my skin was red raw. so off to chemo ward. admitted me straight away on iv anti bioticsm, fluids drip and lots of cream. after day 2 hands all swelled up and bright red and imflamed. saw oncologist on the ward and he says it is a severe reaction to the taxotare so im going back on fec for last 2 chemo. on thursday doc said my rash looked like it was tracking up my veins, so sent me for an ultra sound, wow low and behold i have a blood clot in my arm too. so they wanted me to stay in till monday. but no me being me i have come home with the antibiotics and the clexane injections for the clot with the understanding that if my temp peaks again or i feel unwell then i am to go straight back in. this is the 1st time that i have actually looked in the mirror and thought omg you now actually look like a cancer patient and i dont like it.
i hope you are all having a better time and not to many side effects on tax, it really was a killer for me. i flew through the fec so im hoping that i will be fine for the next ones too.
Dear all, thanks for the advice re mouth sores. I told my oncologist and she has given me Nystan drops for my mouth - anti fungal stuff and a mouth wash called Caphosol. Seems better - just need to avoid very hot or spicy food which is fine. Hands are very sore though!
Just had chemo round 5 -started Taxol. Feels great not to feel sick but waiting to see if the bone ache kicks in!
Good luck all
Feel really bad for all of you on TAX; it sounds truly awful. Stay strong, and do ask next time about other or better meds!! I have also been checking in every day to see if Jelly has written in....so worried for her too!!
Santas Little Helper - I Good luck with your 3rd FEC. I just had my 3rd FEC on Thursday, and today am completely wiped out. After being up 30 minutes I am ready to go back to bed for another sleep. Otherwise I am ok, though they did tell me that my red blood count has been dropping steadily and so they may need to either stop the chemo or give me a blood tranfusion.
Obviously I would rather not have the transfusion, but I guess it is best to keep going with chemo at all costs! Has this happened to anyone else? If so, what were you told?
Hi col- sorry to hear you have been bad. I Can say the pains eased for me after 3 days. I ended up in hospital for 2 day as was dehydrated. I am up and showered today the first time in 8 days, still taking sickness tablets and mouth awful only really drinking through straw. I lost my vision at one point things were bad but turnning the corner I hope. I'm worried too about jelly:-( hope you feel better soon, please eat and drink whatever you can to try and help your body heel.
Hi all quite worrying about jelly. I pray she's ok. Ive been really rough too. Awful aches and pains kicked in and just had to take myself off to bed. woke up with a high temp today but it's going down thank God. really didn't want to struggle into hospital in this blinkin Snow!
Not been posting this week but i have been reading your posts - been quite down and very worried about having my first TAX this afternoon.
Jelly - hope you ok and starting to feel better xxx
I took my 8 steroids yesterday - managed to get some sleep but kept waking up, ended up getting up about 7 am this morning, have had porridge and weetabix for breakfast and taken another 4 steroids in the hope that the combination might wake me up/keep me awake/give me some energy, but no joy yet.
Jenny - this may be a bit late as you may not see it before your treatment, but i posted on here last week about someone who had treatment through a vein in her leg because they couldnt find a vein in arm. If its not too late its worth asking about as i think this would be better than having a line put in.
Does anyone feel like me that if one more person sticks a needle in me i might just grab them round the throat (look out the nurse who is going to give me my treatment later lol ) i feel like a colander and am sure that one of these days all the water i have to drink will start spouting out of me. How many of you are managing to give yourself the injections??? i did them myself last time and will again this time (so i could end up strangling myself lol)
Anyway to everyone having treatment today and in the next few days, good luck and hope the SE's dont get too bad. Hope u all keeping warm and managing in this weather, the forecast for all the snow tomorrow looks pretty horrendous, glad i wont have to go out in it.
Keep well, keep warm and keep SMILING, we are getting there SPARKLERS
love and hugs xxxxxxxxxx
Good luck Jenny and pascal for tax tomoarrow. Hope it hoes well and you manage to get some sleep before it! I finished steroids yesterday so was hoping for some sleep tonight but filgrastin injections give me bone ache so struggling a bit tonight. ah well.
Good luck to everybody else with ttreatments tomorrow and to those suffering with horrible horrible we' s.
Thinking of you jelly. Hope you're ok wherever you are sweetie.
lots of love Col xxxx
I'll have to get working on these ditties to cheer us all up a bit 🙂
I am starting TAX tomorrow aswell. Have also had 8 steroids, forgot to take them at lunch time and it was 3 by the time I remembered, think I may have trouble sleeping too! I a;so use Difflam and find it works brilliantly.
Good luck to everyone tomorrow.
Lots of love and hugs xxx
Hi Supersusan - I had the bad mouth with first FEC and had Nystatin for thrush. Since then I coped with the just Difflam that Santa's mentioned.
I'm not looking forward to the TAX tomorrow, I have been nervous about them not finding a vein. I mentioned it at pre chemo on Monday, my bloods are ok to proceed tomorrow, and the doc said he would put in a PICC if necessary. To ease my tension, I had a reflexology appointment yesterday woith someone who is comfortable treating chemo patients, she got specific training at a Herts Cancer centre in Rickmansworth where I might have my rads. She said she cannot do a full reflexology treatment , it was more of a gnetle foot massage, including lower leg. It was lovely!! I was so relaxed that I left without paying!! I realised when I got home. Fortunately I booked another treatment for 3 weeks time before the next TAX and she said I can pay her then. What a lovely lady!
Santa's little helper - the other thing I did for my sore feet is visit my cobbler. He recommended gel inserts, they were £15 and I put them in my high heel boots which I wear constantly in the winter. (Except in this snow - I have switched to wellies until it melts).
Cannot sleep tonight as have taken 8 steriods today in anticipation of TAX! Am watching a comedy movie until late then will try reading until I pass out. They offered sleeping pills but I am fed up with taking pills. Emends tomorrow morning and another 8 steriods tomorrow. Aren't we brave sparklers coping with all this. I always try and think there are people worse than us, my friend was telling me about a little boy in her son's class who has leukemia, what a brave lad he is, and his mum!
All the best for those who already had tax and those having FEC or TAX tomorrow.
Love from Jen x
Jellymould / Marigold / Santas Little Helper / LucyPenny - what a tough time you guys seem to be having on TAX.Thankfully, I am not having any of that; just 6 lots of FEC and I will be done with this.
Anyway, I just want to give you all (and other TAX people) some hugs and strength to keep going with the regime. Just remember, this ultimately will help you get better!!
I am about to have my third FEC on thursday this week and am not looking forward to it as I was so sick last time though I am going to have Emend this time I think.
Kazaks - you asked if anyone had a sore roof of the mouth. I had it very bad after my first FEC and it lasted ~10 days where I struggled to eat (and drink) anything - hard food either hurt it, or if it was remotely warm it felt like it was burning. Truly horrible, so I really feel for you. However, I also found out after my blood test that I was neutropenic (i.e. no immune system from the chemo) so I needed an injection and antibiotics. It might be worth mentioning it to the nurses just in case you are too as you will be really prone to infection.
Keep well, and keep strong all you sparklers. We'll get there. xxx
Haven't checked in for a while. This tax certainly seems to be (I won't say taxing!!) bloody awful. jelly - so worried about you and hope no news means you've contacted hospital and maybe they're sorting you out? I don't have WiFi access at hospital so I'm hoping that's why you haven't posted. I know it's not always easy to post but do let us know how you're getting on as you sounded awful. much love winging it's way to you.
Lucy - you sound bad too to be on morphine - jeez!! I had my 1st yesterday and have been fine and actually riding on a bit of a high of not feeling at all sick or fuzzy headed or breathless as I've always been on Dec. I'm under no illusions though as it seems to kick in later with all this aching. The filgrastin injections made my bones really ache last time so with that on top it doesn't sound like it's going to be much fun. did you just ask your gp for the morphine? what else have you tried? mums lap is the best place in the world for a cry no matter what age you are! take care.
Santa's - thanks for thinking of me. that's very sweet but I'm ok up to now. I'll be back though may be once the aches kick in. I have to say though that I've read lots of stories from othere on the younger Facebook network that have found tax loads better than fec so I'm trying to stay positive too. Hope you're doing ok?
Jenny - hope you're feeling better and glad you've got . some good friends. your coat over nightie story made me laugh!