If you knew then, what advice would you give to someone about to start Chemo? Im in Tassie

Zoffiel

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

Nay86

@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?

Elfie

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

Zoffiel

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.

Sister

@nay86 I don't know if there's differences between ports but mine only had to be flushed every 6 weeks so fitted within the chemo schedule.  The only special one I had to have done was after chemo ended as my onc wanted it left until after rads in case it was needed for anything.

Nay86

@Sister thank you.  They called it a smart port. I might just check with the Holeman clinic tomorrow just to be sure

pammiesyd

Something I found very helpful was asking my onc for medication to calm me down just before treatment, and to help me sleep during the first 7 days of the cycle (Ativan).

Nay86

Oooh thank you @pammiesyd i am actually quite and anxious person. This should help immensely  x

Nay86

@Zoffiel yes my surgeon was VERY clear on that one. She said ward 5D were trained and the holman clinic and that was it. And to absolutely not let anyone else touch it. She is a brilliant surgeon.

Sister

Ativan also helps control nausea.  I took it for that throughout chemo with the added bonus that it helped me sleep.  Drawback is, of course, that you can't take it if you have to drive.

arpie

When my husband was going thru chemo in 2010 (he had most of his stomach removed) he found that chewing gum helped 'between meals' to clear the 'foul metal' taste in his mouth.  He also got very picky with his food.  He went thru a phase of only wanting KFC Wrap & berry smoothie - then Steak & Kidney Pies from our local bakery - so whatever he wanted, he was allowed to eat as much as he wanted (once he could eat more than a couple to tablespoons at a time!)   

Sister

I kept a packet of Crown Mints on the cupboard for that awful taste from chemo 

youngdogmum

Nay86 said:

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. 

Hi, did you use anything to control oestrogen levels during IVF? Thanks! Best wishes for you  

Afraser

Good mouth hygiene is recommended but you may also wish to regularly (twice a day or more) rinse thoroughly with a salt/water solution or something similar to discourage mouth ulcers. I am not sure about oestrogen suppression at this stage, best to discuss with your oncologist. If cold cap is not an option for you (it works well for some but not for all) you may wish to consider shaving your head or having a really short, short cut with the clippers to minimise mess and distress when hair goes - usually about two weeks after your first chemo. Chemo isn't fun and reactions vary a lot - hard to know till you start. But most find it doable - takes energy, so prioritise your commitments at least until you know how you feel; and determination - but getting rid of cancer is a real incentive!! Most of all, don't compare your reactions or side effects with others, it just doesn't work that way. Some have a really rough time, others - like me - can live pretty normally through chemo. It's an unlucky dip - one day at a time is a practical approach. Best wishes and good luck.