What a time to find out you're not covered by HBF! And can I save my nipple?

Sister

I know some people have a really bad time of it @Patti J but I don't believe that's what it's like for most and for some, like @afraser, they are able to get on with life during it.  I couldn't do that @KylieG but it was still manageable - nowhere near as bad as I thought it would be. 

You will find some posts on here with suggestions of what to have on hand in case you need them.  I would also strongly recommend that, if the meds they send you home with aren't strong enough, get on the blower straight away and let them know.  I spent a miserable first weekend on AC ONLY because I didn't realise that I could ring on the weekend and get something stronger.  Yes, there can be side effects and it's not a fun thing but it is doable.  Your oncologist is no further than the end of the phone line and there's usually someone on here that can give moral support if nothing else. 

Blossom1961

@KylieG As you can see, sometimes people have bad days, even after treatment has finished. However, all you need to do is let your medical team know and request relief. I had nearly every side effect but after the very first night of my first treatment when I suffered extreme heartburn, the Onco kept me provided with whatever I needed to alleviate any symptoms. Very doable. Sending big hugs and hopefully you won’t let others frighten you because it really is okay.

KylieG

@shs14 what is neuropathy?  

@strongtogether thank you for the encouragement.

@Patti J that sounds so awful but it's good to be prepared for how bad it can get.

@sister what is AC?  Has anyone tried cannabis?  I've been in touch with the cannabis clinic in East Freo and am planning to ask the oncologist for a script.  Would she give me one do you think?

Apart from the nausea and baldness and exhaustion, I'm concerned that two of the side effects of chemo are things I'm already extremely prone to: a scattered brain and mouth ulcers.  This is not going to be fun.

On the fun side I went and bought a wig on the weekend.

Patti J

I will be on I.V. chemo indefinitely. 

Afraser

Neuropathy is affected nerve endings, commonly in hands and feet, so peripheral neuropathy. Some chemo, particularly the taxanes, can trigger it. In most cases, it improves after chemo has finished. AC is a common chemo but I always need to look up
its full name!! Not everyone has nausea - I had none at all on A/C and Taxol and also no chemo brain! Negative on mouth ulcers too, but I did my ‘swish and spit’ (salt water) religiously! I really liked my wig - got me through nearly 12 months. Heartily sick of it by the end, but it did a sterling job! Best wishes. 

arpie

Hi @KylieG

With chemo, there is often a pattern that you will notice after treatment.  Hubby used to get very weary about 4 days after and would put himself to bed for a couple of days.  

Most if us have the fog brain whether we’ve had chemo or not!

yep, salt water rinses are good for ulcers .... but if anything persists, contact your Onc and they should be able to help. 

All the best with your Onc meeting ... trust your team xxx

shs14

Hi @KylieG
Peripheral Neuropathy is an often permanent side effect more common with Taxane chemotherapies. 
You can see from this post that quite a few people on the forums suffer with it after going through that regime:
https://onlinenetwork.bcna.org.au/discussion/18792/peripheral-neuropathy/p1
Anecdotal evidence seems to show that icing your hands and feet during the chemotherapy sessions can help you avoid the long term effects. While doctors and hospitals don't always tell you about it if you read the overseas forums it is very common in the UK and US, led by patients themselves.
I know for me that despite the discomfort of cold therapy for every Paclitaxel session it meant I managed to come out the other side without long term damage. So I like to try and share the information with others going through the same. I think one day it will be standard for everyone. 
And I agree with everyone, Chemo is very doable. Exercise is key!

arpie

Yes! Exercise, if you feel up to it!  It may take a couple of doses to work up to it. 

My husband exercised throughout his chemo but had to avoid the sun as it made his skin very sensitive to UV Rays

Less is more .... whatever you feel comfy with.  If not comfy doing exercise - it doesn’t matter!

keep your fluids up to help flush the chemo out too xx  

Sister

@KylieG I used Biotene right through chemo on recommendation of others on this forum and had no ulcers although a lot find salt water fine.  One episode of oral thrush which was quickly sorted out by GP. 

Cannabis is legal in theory but difficult to get.  I'm sure there's a lot of people who would be interested if you are able to get a script.

My onc put me on Ativan for nausea (it does make you drowsy) which worked a treat, and Somac then later, Nexium for reflux.

I found it easiest to keep a notepad on the bench to record my symptoms, temperature, when I had taken meds, and how I was feeling in general.  This was useful in tracking how I was feeling (and when I had taken that last pill) so that I could recognise the pattern of response to chemo.  It also meant that I could compile an accurate "diary" for the onc when I saw him - he would read my notes and put them in my file afterwards.

Find out what additional services, if any, are available from your clinic or if they refer elsewhere.  You may be able to access exercise programmes, psychologist, nutritionist, etc.  If they don't have anything like that, the folk on here may be able to suggest something near you (it can help to put your general area on your profile but don't be too specific).

Blossom1961

I find it I find it strange that we all live in the same country but access to things vary so much. Getting a script for medical cannabis in Geelong is no big deal but other places it is almost impossible. A specialist from Peter Mac in Melbourne said every doctor in Australia CAN prescribe medical cannibis for BC patients, but many couldn’t be bothered because of the paperwork. 

kmakm

Hi @KylieG. I rinsed with salt water after every meal and didn't have a single mouth ulcer. A couple tried to get going in my last cycle but I kept rinsing and they disappeared.

Two nights before starting chemo I had a huge panic attack about it for 45 minutes. Fear of the unknown is absolutely horrible, and like most things in life, it wasn't as bad as I anticipated. It's not fun, but I didn't vomit.

Chemo's effects on your body tend to be cumulative, including tiredness and fatigue. It wears you down so it's really important to be kind and gentle to yourself, accept help when it's offered, and to listen to your body. And most importantly, keep exercising. It's the one thing that's been proven to reduce the side effects of chemotherapy. I walked almost every single day, starting small on the day of each infusion, and building up to 5kms by the end of each cycle.

The other best and oft repeated advice here is to take things one day at a time, and on some days, one hour at a time. Don't look at the whole 4 - 6 months. Break it down to "this week" or "this cycle". You'll get into the rhythm of it and soon know when your couch days are and when the days when you can cook the dinner and do the laundry are! Life goes on, and so will you, and that's the point of the bloody thing eh?!

Now's the time to get the streaming services if you haven't got them and can manage the cost of them. Binge watching shows is a most sstisfactory way of passing the time for many of us!

There's no way round the brain fog (CRCI, Cancer Related Cognitive Impairment), but my oncologist told me that there's solid research about the benefits of reading helping on this front. So keep reading and fingers crossed it won't be too bad.

Some people breeze through chemo with nary a problem, while others have a lot of trouble. Most of us fall somewhere in between. I have never felt more loved than I did during my chemotherapy, and showers with a bald head are sublime! You can do this Kylie, we've got you. K xox

Romla

@KylieG just to add to the great advice above in addition to streaming services you can also access free binge watching movies/ shows via sbsondemand , abciview and even the commercial channels.There is a great 5 part series on ABC iview with Deborah Mailman called Total Control highly recommend.

Also you can access reading material from home through your library with ebooks which might be very convenient during chemo.I tried some e audiobooks but they are a bit patchy depending on who reads them.Benedict Cunberbatch reading Sherlock Holmes is great and Bruce Springsteen reading his biography was great too.Best to visit your local library to get information to set up ebooks as you can access not only your local library’s selection but also the entire state library.

Afraser

I didn’t do an exercise program when I was on chemo (I was working full time) but with hindsight it would have been a good idea - I joined a gym when I moved to a four day week 12 months later (new job, not health related other than wanting a bit more time for myself) and it’s been a great addition to my life, friends etc. My standard advice is to take things one day at a time - that includes assuming you will have certain side effects. You may not - I did get some but they weren’t the ones I had anticipated. Getting too far ahead of yourself can get you worried about things you’ll never have and won’t prepare you any better for the ones you didn’t know about! I found getting out and about was important - many can’t, but if you can it helps to keep your brain and your emotions from fixating on cancer and treatment. It only feels like your life for a while,  your real life is still there and waiting. Best wishes. 

Brenda5

Before I started public system chemo I met with the oncologist who sort of explained quite a lot but then I also had an appointment with one of the head chemo nurses who sat me down, told me do's and don't of things and took me on a tour of where it would be done. That together with chemo side affect remedies on some of these bnca posts really helped a lot. I didn't have to go to work and was able to stay in bed a day or two (sort of like flu) but then gradually things would get better. The neuropathy thing is one of the important side affects to report to your oncologist if it happens. I kept a list of the zany side effects I had and listed them like day one, day two and the oncologist really appreciated it.
I was one of the shocking chemo brain casualties but 4 years later, cannabis oil has almost completely healed my brain and most of my numbness on feet is almost gone as well.  Don't be frightened to report any depression to your oncologist or gp doctor either even after all treatment is done which is when it stuck up on some of us by surprise. They can help with such things too! All the best.

kmakm

Still battling depression here. My oncologist at the time (different one now), never enquired as to how I was going emotionally. I knew I was in trouble so pursued counselling like a dog with a bone. As well as waiting lists, being diagnosed at Christmas meant everyone went on holiday...

It is SO important to advocate for yourself with a BC diagnosis. It's a complex disease that strikes at a woman in a more fundamental way than some other illnesses. Keep asking the questions until you understand. Complain until you are heard. Agitate until you get the treatment you deserve. Most doctors do their best, but we are but one of many patients they see. We become the experts in our own case of BC and we know what we need. One day at a time and you'll get there.