Ive just had my operation to remove 15mm tumour, which good news is that they got it all out - hurrah! With no spread to lymph nodes and in stage 1, with ER + and I think Her2 negative. Orginally the biopsy was a grade 2, but when they inspected it, it came out as a grade 3.
Then comes the treatment …Oncologist today suggested Chemo for 6 treatments over 18 weeks - this starts in 2 weeks time - because of the grade 3.
My main worry seems to be loosing my hair - so obviously having the cold cap (hate being cold!!) but if anyone has any suggestions of what to put on my hair, in my mouth to stop mouth ulcers and generally keep my spirits up, any thoughts would be most welcome - thanks
One thing the specialist nurse, who is fab in Blackpool said to me was “what is 18 weeks out of your life?” - when we were discussing Chemotherapy - My answer was of course nothing.
Hair loss - Really the hair part is not as bad as most people expect it to be. It’s not great, but you will find you quickly adjust. There is a lot of info in this site about coping with hair loss, and you can go to one of the headstrong sessions. Get some nice scarves or hats, or a good wig, or both, and wear whatever you feel comfortable with. (Although fingers crossed the cold cap works for you).
Mount ulcers - use any mouthwashes they give you. Or salt water washes I think help. I have been lucky haven’t had any ulcers.
Keeping spirits up - harder… You will have good days and bad days. Try and give yourself things to look forward to, and don’t push yourself if you are suffering with SE.
Hi there Chaise.
Sorry that you’ve found yourself on here. It is however, a great source of info and support.
A few things from me:
Drink plenty of fluids - I am to drink 2l a day.
Make a chemo diary of any side effects and how you feel on each day - it will help you keep track of any patterns
Talk to your onc and chemo nurses if you’re not sure or are feeling rough
Take each day as it comes - sometimes you’ll need to take it easy and sometimes you’ll be fine
Take 2 paracetamol before starting the cold cap - stops the ice. Dream headache.also have a cup of tea as it is first put on- hold the liquid in your mouth.
If you persist with the cold cap (as I did) don’t worry if you start to shed big style around chemo 2- I did a and thought that was it then it just slowed down completely.
Talk to people- be it a family member or a professional don’t struggle on your own.
Join one of the monthly threads - it will become a mini family of support.
Finally, try and be positive and laugh as much as possible. I like to think that although I have down days (mainly due to steroids) a laugh will keep you sane. I’m still me at the end of the day!
Best of luck,
Mel51
Hi Chaise, I have recently had a lumpectomy and on 3 June I had a cavity shaving as my margins weren’t clear. I have a grade 3 and my treatment will be chemo, radio and hormone treatment for 10 yrs. I will be starting chemo soon but I haven’t got my dates yet. I have found this forum to be invaluable with the hints and tints to get through the dreaded chemo. I’ve read if you eat ice poles during your treatment this can minimise mouth ulcers, it’s got the same effect on your mouth as the cold cap has on your head.
I will be trying the cold cap too, I have long blonde hair (dyed) which I plan to get cut fairly short with layers. I sit at night at scroll this forum for all the information I can get, I feel this has helped me.
We are not alone on this journey, we will get through it, and be stronger because of it. x
I went through Chemo in 2011 - I had 8 lots, 4 EC and 4 TAX. Tried the cold cap once but found it very uncomfortable and just before 2nd chemo I started shedding hair by the handful and decided not to use the cap again. I adjusted very quickly to having no hair and wore a very good wig that I got on prescription (ask your BCN) Best tips for going though (or getting through) chemo? Keep a diary, get a good thermometer and take your temperature twice a day (if it’s high for more than a couple of hours ring the chemo unit as it is a sign of infection) Be kind to yourself, don’t try to be a hero, if you are tired - rest. The effects of chemo build up and you will have rotten days that pass. Plan treats for your “good” week and don’t eat your favourite foods as they won’t taste the same.
Good luck Chaise, and welcome to our select club! If there’s a monthly group for ladies starting chemo this month then do join them - I’m a May Moonbeam from last year and the solidarity is just great. We also started a page of ‘comfort or nursery food’ which was useful and amusing in equal part. I’ll try and find it and bump it up the discussion topics for you.
It’s hard to realise I’m a year on already. It is doable. Nobody says it’s fun, but for most of us the anticipation is worse.
Hi chaise, its tough I won’t lie but absolutely do-able. I could only tolerate 2 sessions with the cold cap but its worth giving it a go. Getting past the first 20 mins is the worse bit. I finished my last chemo end of march. Use mouthwash regularly to keep ur mouth clean and use a soft
Toothbrush. The hospital will give you gelclair or difflam if you need it. Eat little and often. Graze boxes are great. Rest when you need to and do not feel guilty about it. Take it one chemo at a time, thinking of the whole treatment will feel like an impossible mountain to climb. Just get yourself to the next one. Switch your phone off and ignore the texts if you aren’t feeling up to it, people will understand. Last of all, be kind to yourself, your body will feel ravaged by the drugs, you deserve to treat yourself as and when you like. Keep strong x
Thinking about it and waiting to have it are by far the worst thing. The sooner you start the sooner you’ll be out the other end. Treat yourself in the days before and keep busy. You’ll be fine my sweet. You’re stronger than you think x
Hi chaise,
I finished my chemo six weeks ago, it went incredibly quickly you will be surprised how fast it goes for you too. I had moments when I got down but it wasn’t as bad as I thought it would be the anticipation is the worst part! I felt sick for the first few so was given emend, and as other ladies have said it is very good. I found that fizzy drinks and juices were great when you have that nasty taste in your mouth, don’t worry if you can’t eat too much, I had a few days when I couldn’t but appetite came back very quickly and then I was eating like a horse!
The fatigue for me was probably the worst thing but it only lasted 4 or 5 days and then my energy levels cane back up again.
Hope all goes well,
Best wishes Emma
The sickness doesn’t last long, 3-4days tops I’d say. I had my chemo on a Friday and started to come round by Tuesday, weds at thelatest
Hang in there honey.
Make sure you tell them before your next one cos they will tinker around with your meds to make it more tolerable. Emend is good. They can also give you a syringe driver at home if needed.
Please keep us posted when you feel up to it. One down
Don’t even think of the next one. Get over this one. However rough you feel now I promise there are brighter days around the corner and you’ll find a little extra strength to take another step
My recommendation would be look at the haven or maggies as magic support centres and any locally cancer groups. You may find one cancer survivor who can buddy you and be a great point of contact. NB many centres do complementary therapies magic lift
Also book on a look good feel better cousre when you feel up to it. Plus Breastcancer care have a mix of local talks.
Again a monthly thread is great. But my biggest tip manage constipation sounds yuck but I know take stemna the day prior to chemo v uncomfortable bunged up
Check out a chairty called Heather’s Hair - www.heathershair.co.uk They provide human hair weaves you wear under a hat or scarf. My full brown weave saved my sanity and actually looked aload more like my own hair than my wig ever did. All the best. Marie
