Good to hear from you Fiddlercrab, I was wondering where you had been. Hope half term was fun. All the best for T2 tomorrow.
I know many others are having T2 also this week - good luck to everyone, will be thinking of you all.
Jacquie - I really hope your hands start improving very soon and you get your taste buds back.
WMJ - do you feel better for your day of rest yesterday?
Touch wood the nausea/reflux has finally gone for me! Took a long time. Still not really keen on many foods though, can't wait for taste and appetite to come back.
Love to all, Evie xx
Blood tests: check
T2 tomorrow: check
Forgot the steroids at lunchtime and had them at 4. I may regret this tonight.
Hope you're all OK, I've been busy with half term and haven't caught up yet.
I am feeling totally exhausted at the moment, it came over me last night. I have been doing so well on the weekly treatment & I think I have overdone it. Total rest for me for at least today and tomorrow. 😞
Hoping you get some relief today Andreaj.
Hoping everyone has a decent day. X
I had surgery first, didn't quite get margins so repeated 3 weeks later. But now feeling lucky in that I havent got any more to think about. 3 nodes removed and all clear.
Trouble was, tumour was a G3 and vascular - hence in the December club!
Pre chemo bloods tomorrow but expecting RBC to still be low so will be delaying first round of T. No point in starting this if already compromised. Am so tired and worn out it is unreal.
Went to my van in Talybont Fri and Sat and it had to be the coldest wind chill ever on the beach!! but it did perk me up and we got to do lots of walking, around Barmouth .... Got another Onsie - Pink this time!!
I seem to spend my life in Onsie's atm, so easy....
I have my look good feel good session on Tuesday, a late cancellation, hopefully something to look forward to.
love to all
WMJ - sorry to hear that you have to go back for more surgery. I have been told that my surgery will be done between 4 and 6 weeks after the last dose of chemo - not sure if that is a government regulation. So hope you will be fully recovered by your son's wedding. Something very special to look forward to - the wedding I mean. xx
Yes Evie I had a lumpectomy with clear margins in November, unfortunately 6/7 lymph nodes they took were 'nasty' so have to have a full node clearance plus radiotheraphy. My lump was very small, less than a cm but still managed to cause damage to the lymph nodes. It was not expected as no evidence from the ultra sound and it being a small lump. X
Andreaj - shocking that the hospital weren't able to help. Let your husband sort out the complaint for you - he will probably feel good that he's doing something to help. You have enough on your plate already. Loads of good advice about pain killers from everyone - hope you manage to get something to sort the pain before Monday.
SALowery - that's really good to hear that you are feeling back to yourself and heading off out to eat. Have a great time and enjoy that glass of wine! At least you now know what T will throw at you. Thanks for asking about me - I'm up and about a bit more now but still low grade nausea and quite dizzy. I'm going to be asking for stronger drugs and anti reflux drugs when I see onc next.
I was caught like yourself over a weekend during a chemo cycle with a lot of discomfort and pain - eventually on the following Monday I spoke to my GP who prescribed Naproxen and Co-Codamol.
However Co-codamol is available over the counter so you can get a stronger pain relief right now. There is no reason for you to go through such discomfort - I found it so uncomfortable and wouldn't want someone to go through it when there is an alternative available.
Someone on another thread suggested taking one each of Paracetemol and Co-codamol so you get the full dose of Paracetemol with an extra hit of painkiller of Codeine. I found it helped me as two co-codamol had the effect of me feeling nauseous and sleepy whereas one and one did the trick without any other side effects.
I hope you find some relief soon.
meant to say Thanks to everyone for all the sensible advice and also that yes I am now taking loratadine to help with pain from gsf injections - they worked ok last time round am dreading that pain kicking in on top of this
Thankyou everyone I really was at my wits end and knowing you are out there helped even though you couldnt do anything
I phoned the hospital it took about an hour to get the dept I needed to pick up and then despite a very clear description of symptoms and the agony I was having spasmodically they suggested paracetamol !!!
I am told there is no one who can prescribe anything stronger until Monday which I feel is totally crazy, the person I spoke to advised I either get admitted via a and e (last time I was in a and e 12 hours and felt like I had been beaten up when they were done never again) or wait until Monday and keep taking ibuprophen and paracetamol. I mentioned Gabapentin and she sucked through her teeth and said they would not give it unless I saw the consultant first anyway. I asked about GP unit she said they will not prescribe more pain relief for this as it is down to chemo so long story short I am in horrible pain on and off until Monday at least.
I have to speak to specialist nurses.
I explained I am worried about actual nerve damage as this pain seems far more than normal and I can not feel parts of my legs and feet, but she just said I had to wait til Monday.
It feels as though other areas people are getting better care? I cant beleive Im supposed to just stand this because no one is there at the weekend!!
Hubby is so sick of it he is now making notes and will put in a complaint. Normally I would do that but I just feel so vulnerable and stressed I cant even think straight let alone complain or put things in writing.
I so hope the rest of you are having a good weekend, I admire you all your determination and strength, I used to think I was strong now I feel ashamed of how pathetic I seem to have become..sorry but I cant say it anywhere else
Hi Snail - I am pre menopausal (well I was before chemo, periods stopped now) and I have been told I will be given Tamoxifen for 10 years. I haven't dicsussed it any further as they have told me to focus on the chemo for now. Will be interested to hear what your onc advises. xx
Morning everyone - I know Andreaj is having a tough time, but how is everyone else? SALowery - how about you, I know T has been hard. And Jacquie?
WMJ - good to read that P is going well. Have you had breast surgery already?
Agarside - you are so good at taking control at appointments. I still don't think I'm totally clear about what the Dex does - given that different hospitals give different doses. I didn't have any the day before T and hardly anything with FEC.
Claire (Rooner) - great to read about your day at college. Definitely helps to be "normal" again even for a few hours.
Snail - I admire you teaching year 11, that's got to be one of the hardest years in terms of attitude.
Running Girl - hope you have a fun day in Wales tomorrow.
Hi AndreaJ - so sorry to hear you are feeling so rough. I have had three T (now having FEC) and days 4,5 and 6 were the worst on T - in fact one day I felt so grim that I wrote in my symptoms diary in huge letters "no more chemo". But things did get better. As we have more doses of chemo the effects get tougher. The others are right - call the hospital and get stronger pain killers. We all have a moan on here when we are feeling rough - I certainly did after my first FEC, and everyone helped pull me through.
You too are brave and this won't beat you.
Big hugs, Evie xx
after first T was doing ok then pain in hips legs feet started, its now day 5 or 6? feet are now agonycan bareky stand scared this will last as can hardly stand the pain. taking ibuprophen is all I have atm how do i get through more of this
sorry to be miserable you are all so brave this thing is beating me now
Glad you are starting to improve, it has been a tough few weeks for most of you and although not making many contributions, I have been keeping up to date with your posts.
Jacquie sending you my best wishes, you have really be through it.
Cookiepuss sorry to hear about your Mum, that is so tough for our all.
Had my 3rd weekly Paclitaxol today, I am doing fine on it so far, which I am obviously happy about.
Met with my ONC today and discussed my surgery, she is arranging for me to see a surgeon for full node clearance. Hopefully this will be done a few weeks after I finish the chemo.
take care XX
Pre chemo T meeting with oncologist this afternoon.... I ended up seeing the Reg, as a woman complained that she had to see the Cons so took my appt at 4.30 and I had to wait till after 5pm .... hey ho, think I did better as not keen on Cons.
Anyways, RBC still on low side, 118 - particularly for me, I need 130 or above to function normally. Am very tired and symptomatic of anaemia. Reg wants to lower T by 20% and delay a week to get me as close to normal levels as poss. WCC good and my usually lower that average GFR has raised, very strange lol.
We did have a conversation on Dex, he wants me to take double of what I had for FEC, so when I told him I had a zero on FEC he didnt believe me as I should have far more symptomatic.. Anyway, have agreed to a half dose on chemo day. He tried to tell me the nurses wouldn't be happy about that, which is when I told him if he wrote up our discussion then there shouldn't be a problem - if nurses kick off, I will leave and he can sort it out. (btw Dex of no use to build RBC, I need an anaboloc steroid and he wont prescribe lol )
So feel ok, it was a good discussion.
Hope everyone is doing ok...
Oh Cookiepuss - I'm so so sad to read the news about your Mum. Sending you and your family lots of hugs and strength. If it helps to talk on here at all then do whatever it takes.
I can only echo WMJ's advice on here - to take one day or hour at a time. Try not to think about the next T and instead focus on your Mum, your family and you. Let the oncologist do the worrying and thinking for you.
Lots of love, Evie xx
Glad to hear you are feeling good - and impressive achievements today. But not good about trampoline and cat flap - hope your cat is safely curled up inside? I seem to have started a number of jobs and not finished any of them. You have inspired me to get on with them! xx
Thanks Snail - I have chemo brain and just can't remember anything, apologies. Maybe it was Fiddlercrab who is having surgery next too. I do remember you are "only" having FEC. How are you today? xx