I am in my 11th day of chemo (epirubicin and am totally wiped out. I have been through nausea, fatigue, constipation, excessive indigestion and heartburn and now have cystitis and diarrhoea.
Does anyone know if this is the usual process or am I doing something wrong?
Sounds about right Venice.
I was very much alike, but in different order and now muddling on through tax.
If i’m wrong, someone will be along to correct me.
Venice, make sure you keep a record of your side-effects, write them down, and bring your record to your next pre-chemo appointment. It sounds like there’s a lot they can to do improve things for you with your medication, so make sure you take the time you need to get things sorted out at your pre-chemo appointment and get the pharmacy to talk you through the drugs you end up with. It can take some time to get things settled but you should find the second chemo is managed better.
Thanks chocciMuffin sounds like good advice I will start to make an accurate record. At this stage I didn’t know what to expect or at least the depth of experiences, everyday seems to bring a nasty and several challenges. I hope the next treatment isn’t as bad as this. I guess at least I should be anticipating more and able to manage better.
And all they ever bang on about is hair loss! It’s upsetting BUT IT DOESN’T HURT!!!
I likened my list of side effects to the line-up at a heavy metal concert…
“And tonight we will be showing the following acts…
Phlebitis, Hyperglycemia, Hemorrhoids, Oral Thrush, Cystitis… and top of the bill… STEROID PSYCHOSIS!!!”
The range of symptoms and the degrees of severity range greatly. Some people are more unlucky than others.
My only advice is pretty obvious stuff…
Take care of yourself - drink as much water as possible, rest as much as you can, eat plenty of roughage and fruit, get a little exercise every day, take great care with oral hygene (gargle, soft toothbrush and those wee interdental brushes).
Be kind to yourself. DON’T compare your experience to that of others - you are unique.
DON’T suffer in silence! I always felt obliged to put on a ‘brave face’ - it was a real mistake. Inside I was falling apart. Lean on your breast care nurse.
Sadly you are not alone. Tick those days off the calendar… (I was constantly working out the percentage of time left!)
Ultimately saying out loud - I CAN’T COPE - is frightening. There will be days when you can’t cope and needed to sob and hide under the duvet, and that’s OK.
Be kind to yourself. Every day remind yourself of the good things in your life, however small.
My best wishes to you xxx
Oh Emmasquarepeg thank you thank you. I thought I was a wuss and have reached the stage where I don’t want to put on a brave face. You voiced so much that I would have liked to but wasn’t sure I could. What a relief you are to me xx
i been lucky when it came to sickness side of it altho i do have nausea
but not so lucky with thrush ,heartburn constipation
but onc nurse gave me everything i needed
i too am on epi and 1st time want to sleep alot just not been as bad after 2nd lot but that was only yesterday so things can change but do tell them they will give you wot you need to help
maz xx
Venice
You are more than welcome.
When I started this ‘journey’, everyone around me kept telling me not to go looking up stuff online because I’d freak myself out.
BO**OCKS
Maybe if I’d read up I could’ve avoided some of the worst SE’s.
I would have insisted on a PICC line before treatment began (rather than after the 2nd lot of chemo, by which time I’d developed phlebitis - and now have 2 collapsed veins). I’d have been aware of what steroids can do to you mentally and not have been so terrified that I was going crazy. etc etc etc…
Too many people pressure us about the importance of staying ‘positive’.
BO**OCKS
There is no evidence that a ‘positive’ attitude has any bearing whatsoever on our body’s ability to cope with being poisoned with chemo. It’s just one of those meaningless things people say mostly because they can’t cope with seeing you falling apart! Anyway - I always say ‘I’m neither a pessimist nor an optimist, I’m a REALIST’.
You will learn many lessons over the unfolding months. One that I learnt early on when talking to my chemo-buddies, was that everyone has the capability for incredible courage, you and I included.
emma xxx
I second the B**locks - Just do what you need to go to get through it all, whatever that is 
What a bunch of brave, ballsy, bo**ocks bashing, bald birds we are!!
Sleep is your friend… if you’re asleep, you’re less likely to be feeling icky.
Unfortunately, insomnia can be another SE, but for me only in the night, so I have to crawl off for a siesta or two during the day, particularly in the first week after poisons.
The best way I’ve found to help me cope has been to visit the forums frequently, but have found myself addicted! (Hadn’t you noticed?!)
Morning ladies
Just wanted to say that although I haven’t started my chemo (this tues - 7 th) reading your posts has made me feel better. All my friends and family are really gr8 and supportive but they don’t really know what going on in my head, but you’ve answered alot of those niggles that keep ‘bobbing in and out’!!
So thank you :o)
Clare xxx
Just to repeat what I’ve said elsewhere - last visit, my oncologist siad their AIM WAS THAT WE BE FREE OF SIDE EFFECTS. I have learnt to talk about things however small. There’s an advice line to call… they want us to use it. Personally, I find the BCN easier to get hold of and a better listener, but we each find our own way through… but don’t suffer in silence girls! Have you got Hirudoid for the phlebitis? It stops any clots forming and brings out the bruising and soothes…Jane
@Jane
Hirudoid? No - not heard of it.
Wish I had your Onc!!!
During the chemo months, I only got to see my Onc when I kicked up a real fuss about the Steroid Psychosis.
I repeatedly asked mt BCN and others if something could be done to help my Phlebitis and all I was given was bloody paracetamol! I couldn’t straighten my arm for 6 months and as a consequence of holding my arm awkwardly all that time, I have developed Frozen Shoulder - painful and incapacitating and which can last 1-2 years!!!
If you don’t have a particularly attentative medical team, it can be VERY difficult to sum up the energy to fight your corner. Being a ‘squeaky wheel’ is frequently not sufficient. I regret not appointing one of my friends as my henchwoman! And that would be my advice for the day… If you are fortunate to have a friend/relative who has the intelligence and interest to understand the procedures, medications, SE’s and who is forthright, AND who has the time - let them fight some of the battles for you.
All too often I was too confused and upset to argue my case and insist that solutions be found to my problems when I was casually dismissed. All too often I felt guilty making a ‘fuss’ knowing that there were patients with terminal cancer.
A brilliant BCN can make all the difference. Mine is a nice enough woman, but too difficult to contact and not proactive on my behalf.