Forum Discussion
If you knew then, what advice would you give to someone about to start Chemo? Im in Tassie
Hi everyone. Sorry for the long post in advance..... sooo this is my story. Im 32 years old. I was talking in bed with my boyfriend and went to lay on my back and something pinched in my right breast. I felt a lump that was different to all my other lumpy breast tissue and the BF agreed. I see a chiropractor for realignment of my body and lymphatic massages every 4 weeks and noticed all the other lumpy breast tissue was broken down but that lump. After 2 visits and the lump staying i went to my Dr who sent me to have a mammogram (which friggen hurt) and an untrasound which i had to wait 4 weeks for the appt. I got in in the 16th Aug Thursday 2018, they scheduled an urgent needle biopsy the 20th Aug and by the 23rd Aug i was diagnosed with Breast Cancer. I went into surgery 5th Sept to have a lumpectomy and some lymphnodes removed and the specialist confirmed it started making its way into my lymphnodes. I've been diagnosed with Stage 2 Grade 2 (was grade 3) Ductal Breast Cancer Her 2 negative and oestrogen and progesterone positive. I have been using implanons in my arms for nearly 10 years and it makes me wonder if this has contributed to this. I had a Smart port inserted 28th Sept. I'm currently completing IVF before my Scheduled Chemo on the 22nd Oct. I have to have treatment every 3 weeks for 4 months.Then radiotherapy and hormone therapy. The sheet for Chemo says FEC part one of fec-d and my second sheet says part 2 of FEC-D i hope you understand this. So what do you wish you were told about Chemo? My hospital doesn't have the cold caps and has advised me my hair will go. I've been told to put on gel toes and nails as i will be sun sensitive and i have purchased soft toothbrushes for each chemo round and moogoo body wash, mouth wash, toothpaste and deodorant.
29 Replies
Ports don't need any attention between treatments, as a general rule. Ask when you go in for your first chemo.
The other thing to be mindful of regarding ports is that most pathology services still don't have staff trained to use them. If yours works well and you want to use it to draw bloods prior to treatment, you may want to make arrangements with the oncology staff to have it done in that unit.
- Hello @Nay86,
I am so sorry to read of your news, but very glad you did get help.Chemo can sound incredibly scary. Everyone does react differently to the same drug, so do not be worried if you don't have some symptoms that others do, or visa versa. I used to always fall asleep while receiving treatment, so I would take a diary to take notes to ensure that I don't forget. If in any doubt ask your medical team even if you have to ask them 3 or 4 times. Wishing you the very best xx - @Karenhappyquilter looks like they have given me Axynzeo to take 1 hour before Chemo, Dexmethsone- nausea meds and Metoclopramide- break through nausea tablets. Everyone has given me such wonderful advice. Yes it does suck i dont have the chance to try the hair cap but oh well as long as my fingernails/toenails stay put i should be ok. Thank you everyone for all your advice i will try not to overthink it. I had my port in since 28th Sept, when i have my first Chemo it will be 4 weeks in. Apparently they need a flush every 3 weeks? Should i say something before week 4?
My advice is much like @kezmusc . There are a thousand things that can go wrong; the reality is that most of the time its just a bit shitty and inconvenient. There is no way of guessing how you will react and you can send yourself mental trying to prepare for every possibility.
My main advice is prepare for the shitty bits by making sure you have a bag with phone chargers (long cord so you can plug into inconvenient power points), clean knickers and a thermo cup easily at hand in case you unexpectedly find yourself locked in the slammer. Keep a diary and get copies of all your test results and reports and try, if you can, to make contingency plans for pet care if you live on your own and have fur babies that may need to be looked after in an emergency. Family members will cope on their own if things go pear shaped--it's hard to starve to death in a couple of days and housework can wait. Don't let anyone fill your freezer with spag bog and other things you wouldn't usually eat. If some one want to help, ask them to do your washing or clean your bathroom once a week. Then hope. The more relaxed you are and the less stress you put on yourself, the easier it will be. Mxx
- Sorry about your cancer but great you found it and now being treated. Lots of good advice above. I had FEC. Important things for me were:
you might be given maxalon for nausea and some people have a bad reaction to Maxalon, I did, I had Parkinson’s disease like shaking in my legs. If you have this reaction stop taking Maxalon and go to emergency, they have an injection they can give you and the shakes wear off eventually;
which leads on to saying there are much better drugs for nausea than Maxalon which you can have, you don’t need to suffer nausea;
i found out out by accident that my oncologist answered emails promptly, this was wonderful if I had a query;
you might not be able to read a novel when having chemo, my brain just couldn’t cope, but I could read and enjoy short stories and newspaper articles;
tv is also great, I watched lots of call the midwife and great British bake-off;
You might be surprised by other people’s reactions, some people will be great and very supportive and others who you expect to be great, are disappointing;
there is a theory that fasting around each infusion makes the chemo work better and also have less effect on healthy cells, it’s a theory only;
managing your bowels is important, sometimes you might need medication for constipation one day and then the next day, medication for diarrhea, always drink lots of water;
excercise is very helpful, so long as you can do it; and
it ends eventually and you move on. Best wishes. Karen - Hi @Nay86,
Welcome to the forum lovely. You already have some awesome advice from the ladies (as usual).
Trying to work out what caused it will do your head in. There really is no rhyme or reason to it by the looks. Just plain out bad luck being the 1 in 8 winner of the booby prize.
I had a similar rotten thing as you by the sounds. Stage 2 grade 2 ER/PR +, HER2neg. Lumpectomy, Aux clearance 5/24 nodes involved, 6 mths chemo (different regime, I had ACT) 30 rounds rads, 10yrs hormone therapy.
What I wish I had have known at the start?? I wish I had have known that my brain was conjuring up a lot more of a horror story than what it actually turned out to be. It would have stopped a lot of anxiety, tears and worry.
I wish they had told me that when you need to pee, you better run fast. There is not much time in between. It almost got very embarrassing a couple of times.. That one is not on the list of side effects.
Definitely get the nails done. I just used gel polish and had no issues with my nails.
I had a reasonable run with the whole thing I guess. Kept my hair (sux they don't have a cap for you to try) never caught any bugs or colds. Minimal fatigue and just tried to carry on as normally as possible. There were crappy days along the way but a lot that weren't.
Very few problems with rads, apart from it being a pain driving there everyday. Moo Goo is awesome stuff.
One thing I do suggest is to take a lot of photos of the fun things you do along the way with family and friends. It gives a great sense of achievement to see what you managed in amongst treatment. Plus that way when you look back that time in your life is not all about the cancer.
xoxoxoxo - On a slightly different note, I didn't stock up on much and didn't use much. No steroids after the obligatory ones with my first treatment (I had A/C, then Taxol and Herceptin). Salt solution managed my mouth, no ulcers, normal toothpaste/brush. Normal hygiene, didn't get any infections. No nausea (burped a little for a day after Taxol), no fatigue. Lost my taste buds on Taxol, so it didn't matter too much what I ate as I could only taste about 4 things (but still, no nausea!). Switched to MooGoo deodorant (which I still use). Good to be prepared though, here's hoping you have a good run. Best wishes.
- @Sister Aaaah ok no probs xx
- I used the disinfectant wipes when I was out and about. The toilet wipes were for when the bottom got a bit too sore!
- @Nay86 I had a different cancer and a different chemo to u and everyone does react differently and u can react differently each cycle. Just don’t be afraid to ask for help and never suffer in silence if u r sick or in pain. Sending u big hugs xoxox
