All Alone

Tinks

@ayrhaven, good to hear your plans are progressing. I would definitely take a person to next appt with onco, if you are allowed to, as there will be a lot of information to take on and questions to ask. Good to write down your questions and worries so you don’t forget them.

As for chemo, we used to be able to have a person in but recently Covid precautions put a stop to that. At some stage that will be relaxed!

it sounds like you maybe having AC or EC first. If so here is some info- This is two drugs given sequentially . One is bright red! (A or E)  and don’t be worried as you will see your urine turn orange pretty quickly it is just the colour of the drug as the body processes it out through the kidneys. You will be in the unit about 3-4 hours  for those two if you do not cold cap.

For your port, dab a small amount of EMLA cream on top and do not rub in at least 1 hr before and cover it with a film dressing like Tegaderm or even a little glad wrap to stop the cream rubbing off. It makes a big difference to feeling the port access needle. 

If your port is sore for a few days don’t worry it does settle down. 

Ask for an icy pole if you aren’t offered one, or anything cold for your mouth while the red injection is given, it is to help reduce mouth ulcers. Takes about 20 mins. Use slowly to keep your mouth cool all round, don’t eat fast. 

Hope these tips help. At my chemo clinic the nurses were fantastic and they are a great source of info so ask away!

lots of love Tinks xx

Sister

Not sure how Covid affects taking someone in with you but ask your doctor if you can record the appointments so that you don't forget anything.  As for chemo, I would make sure that you have someone to drive you home even if they are unable to be in the room with you during it.  It always left me so tired that I wouldn't have trusted myself behind the wheel afterwards.

Shellshocked2018_

Hi ayrhaven, as others have mentioned above, yes I too was told that my tumour was bigger than first thought before surgery, nothing is correct until pathology reports come back.
Please don’t worry as this seems to be the norm...... It was a shock to me to.......

You will have some healing time from surgery, during this you will have an appointment with an Oncologist to talk and arrange your Chemotherapy treatment. 

Speak to your oncologist about having a port. ( much easier than trying to find a vein throughout treatment)
You will also have an appointment with an Oncologist nurse who will go through what to expect , side affects etc, and answer all your questions so I would recommend start writing down things you would like to ask, and as you think of something jot it down.

You will also get a call from the Radiotherapy unit where you will have a meeting and then have a planning session. You will meet the radiotherapy nurse and she will go through things with you and guide you through your radiation treatment .
Once you have finished chemotherapy you will have a few weeks of and during that time the radiologist will contact you as to when radiotherapy will commence.

Amount of treatment will be determined by your specialists, depending on your diagnosis.
I haven’t read anywhere what type of BC you have been diagnosed with?

I was triple negative, so my treatment was only surgery, chemotherapy then radiation.

Things to do whilst you wait for next step:
Cook some meals  and soups and freeze for when you start treatment.
Arrange care for family members if needed.
Arrange who is able to transport you to treatment and home again.
Buy up bulk of food of what you can, so you don’t have to shop if you don’t feel like it.
Look into online grocery shopping and delivery if needed 

Sister has written above some things to start collecting in the way of over the counter medication which is useful.

Have a bag packed with pjs, underwear, slippers, personal hygiene etc, a good book or crossword book etc , ready just incase you have any sudden trips to hospital.
I learnt the hard way and my husband had to pack a bag for me lol.......... I kept a bag packed whilst I went through all my treatment ready to go if needed.

Not sure if you have family living with you, I went through with them on how to use the washing machine, and anything else you feel they need to know about any other appliance.
If you do the day to day running of the household, make a list of what you do so others can do those things.

Get a nice big water bottle 3 litre one, so you can monitor and drink plenty of fluids during treatment.
I purchased some head scarves of eBay , so I had them ready for when I lost my hair before treatment.

YOU HAVE GOT THIS..... You will soon be looking back and sharing your story with others to help them get through.
Take one day at a time, I just kept busy, you will feel better once you have spoken to the specialists and know when you’re starting and what’s happening.

Take this time to rest and heal your body, be kind to yourself .Sending gentle hugs .
xx

Shellshocked2018_

Hi aryhaven,
Yes when they say full body scan, OMG did my brain go into overdrive.... this is a normal process after speaking to so many others. Great news  all clear.
Happy to see you wrote what cancer it was.. exactly that.WAS........
Next step is to just have treatment to mop up anything that can’t be seen ( really piece of mind). But it’s what we do to kick this to the curb for good.
 I’m happy to see they are giving you a three week break in between AC, that will give your body a better chance of recovery and you will feel so much better before next dose.
My treatment from day of diagnosis, two lots of surgery, chemotherapy and radiotherapy was exactly one year. 

Most of us are different so don’t be overwhelmed by my one year.
It went rather quick, just remember one day at a time.

Strongly suggest that someone drops and collects you from treatments. You are allowed one person to sit and stay with you if you wish.
I couldn’t drive during chemo, I drove myself to a few radiotherapy appointments earlier at the start, but I was fortunate enough to have my husband home to assist in driving as I was about an hours drive from the hospital.

Definitely take someone with you to Oncologist appointment as there is a lot of information to absorb , it’s nice to have a second set of ears.
Start writing questions down that you would like to ask.

Great that your port is done , you have been very proactive.

All the best for tomorrow, don’t be scared of the Oncologist, they are on your side to kick this to the curb for good.
They will monitor you closely  throughout your treatment.
You will be sent home with information, take time to read it when you’re home and able to.

Any questions we are all here to help you through.
You are not alone.
YOU HAVE GOT THIS
xx