Need to talk

priya_09

Hi   I am priya a 36 yr old mum of 8 yr old daughter. I was recently diagnosed with breast cancer. I had 2 surgeries and the 16mm lump was removed and all the lymph nodes aswell. Surgically m cancer free now but have a long treatment plan ahead. I will start with my chemo soon...
I just want to talk and get some positive experience about the chemo journey. I have been told I will lose my hair. I really don't know what awaits...My nurse advised to go online and talk to everyone in this forum and that might ease me down. 
I would appreciate if I can get any suggestions on how I can walk this path with lots of positivity. 

Thankyou

byo_boy

Hi @priya_09, so sorry that you have to join this club that nobody wants to be a part of. We've just begun our journey - in fact I'm literally sitting in the reception of the Royal Brisbane Womens Hospital while my incredibly strong wife Rebecca is upstairs getting her staging PET scan, so I can completely empathise.

The last few weeks have been an absolute blur for us with lack of sleep, lack of information and lack of a clear direction just making things worse. Honestly the one thing that's helped keep me sane is just being able to vent and chat here. The group here are fantastic and will definitely play a part in supporting you moving forward.

I think the most important thing for us staying positive is surrounding ourselves with a good support network, eating healthy and trying to get as much exercise as possible. We're also taking hope and positivity through stories from others - here's a book I ordered for Rebecca which I think will be useful:

Life is Tough (But So Are You)
https://www.brionybenjamin.com/book/

Also, a story from a close family friend who, despite a rough start, showed real determination

https://www.justnowstories.com/post/viv-version-2-0

Hope that helps - please don't be afraid to message here, it really helps.

Take care,

George

priya_09

Thanks George, I will keep Rebecca in my prayers...I had my Pet Ct a few weeks back and it came back all clear. 
Stay positive. I will definitely read the book and the story you shared. 

CeeCee

Hi @priya_09 and @byo_boy.
I have been where you both are now and completely empathise with you. Please know that when you get your plan and start it, life does get better. Waiting for the Pet scan results was next level so thinking of you today George and Rebecca. I must say you are an amazing husband George, my husband is amazing too but to get on here and be so involved, you are an inspiration.
I have 2 Chemos down (AC), 2 more to go then 12 Weekly Taxols. Lost my hair 2 weeks after the first treatment, day 3,4 and 5 post treatment are like I have a bad flu so lay low on these days but the other days I have felt normal. As we all know everyone will have a different story to tell, hoping you handle it well. There are definitely some positives to this journey like meeting some great people, the amazing support you get along the way and personally my family has become so much closer.
Thinking of you, please know that it does get better.

Afraser

Reactions to chemo may differ from person to person, even on the same regime, so any advice needs to be considered in that light. Many chemotherapies will result in hair loss - the chemo is targetting fast growing cells and unfortunately hair follicles fit the bill. You may be offered cold cap, a head treatment that may preserve all or some of your hair. Some people hate it, others find it worthwhile. You may want to prepare your daughter for this, in either event - if she knows it is part of your recovery, it will be easier for her to accept.

The most common side effects are nausea and fatigue. You will be given medication to assist combatting nausea, but you may not get it at all. I had two different chemotherapies and was never sick or ever felt nauseous. Unfortunately it's not clear who is not affected, or why! I didn't take any nausea medication after a short while, but only becase I had no symptoms. They can be very helpful for those who do. Fatigue can hit all at once or may creep up. Many people find they have good days and bad days and can plan accordingly. Again, I had none and continued my employment during treatment.

The taxane chemotherapies can cause damage to nerve endings (fingers and toes most often, peripheral neuropathy). Let your oncologist know straight away if you experience tingling in your extremities, in most cases it will dissipate after chemo but it can linger.

There tends to be a natural concentration on physical side affects - after all, your doctors work with the body. But your feelings and emotions get stirred up by this stuff - feelings of mortality, of uncertainty and anxiousness are incredibly common and very normal. Cancer is a serious illness you weren't expecting! Sometimes you need to talk to someone who is not a friend, not family, to acknowledge your fears and concerns without landing them on someone close to you. A good counsellor can be very useful, even for a few conversations, in helping you face these, focus on the future and  not the past, and help your mind help your body with recovery. Your oncologist, day oncology or GP can assist in locating someone suitable. Best wishes.

Paris_24

@priya_09 the positives of chemo - the nursing staff, the Mc Grath breast care nurses and your treating team are amazing in their care.  Ask or take offers for help from others to get you there and back, to make food or just to come and sit as a presence.  Chemo is not always an easy journey and as @Afraser notes it is different for each individual- what works for some doesn’t for others.  Your mindset helps and by choosing positivity and listening to what your body needs (sleep, medicine, water) you are already on the path to healing.  It will be natural to have wobbly days where it feels too hard or you want to cry - sounds like you have a strong motivation to get through with your daughter.  I found a calendar on the fridge really helpful as a visual reminder of appointments but also a countdown.  I have been on chemo since beginning of March and the end is in sight with six more weeks to go.  I too lost my hair in the first round of chemo in week 3 and took steps to cut it short for surgery then shorter still number 2 before chemo.  It is a really fine white fuzz as the melotonin is stripped out.  There are organisations that can help with little caps or turbans while some choose wigs.  See what your regime is first as there are different types of chemo based on your individual circumstances.  I would also recommend having a notebook to write down things to ask your drs, any chemo side effects or things you are told.  A chemo foggy brain can make remembering your questions or the answers hard - this then forms part of a record of your journey too.  Sending you positive vibes as you find out more from your oncologist and begin the chemo journey.  Good luck and keep us posted on how you are going. 😊

jennyss

Dear @priya_09,

from jennyss in Western NSW

JenD

Everyones side affects to chemo vary it seems.  My story, Ive had x4 dose dense AC (doxorubicin - red devil), and tomorrow have number 5 of 12 of paxilataxel. (I had lumpectomy and axillary clearance with 14 lymphnodes positive, so next step was chemo).   I had cut my hair shorter prior to surgery, just for easier maintenamce and when it started moulting by day 18 I had it shaved by my regular hair dresser.  I was offered cold cap but didnt worry.  Its winter now, so caps and beanies do the trick.  I have lost most other body hair too, but still have my eyebrows (yay).  Will maybe look at a wig for thinking about returning to work next year, and sons wedding in december... but in no hurry.  Mental positive through it all is important.  Before I started chemo, I told my medical oncologist I had a small overseas trip booked in july  for 1 week. (part holiday, part music competition), so pending final approval tomorrow, but Im able to travelling to nz during chemo (with a well deserved week off for body recovery, as Im a bit anemic now).  I must say it hasnt been easy some days, mainly fatigue that hits, bowel adjustments to chemo, and Ive just recently gone off most meats and snack more than eat ,  but take the good days as they come.  So far it has all been manageable enough... one day at a time.  All the best for your treatment, just ask your oncologist lots of questions if you have concerns, and let the medical team know of any side affects as they happen, as they can adjust drugs, or suggest things that may help.

Cheri

@priya_09 Hi Priya, the ladies here have shared and given great advice on here which I always appreciate. Sorry to hear you going through this. personally chemo was ok for me, I did lose my hair but wore wigs and scarves. I am four post post chemo now and my hair is about pixie length. The other side effects were minimal but everyone is different. I sent you a direct message should you wish to chat further. All the best.

priya_09

Thankyou for all the comments. I am going to get my hair cut done on Saturday Nd will discuss about head wear Nd wigs. I am positive and getting a lot of courage reading about all the individual journey you had Glad to be a part of this group. My birthday is in a few days and I have raised a fund-raiser towards a donation for BCNA. 

Alfie

So many good tips. I am about to have axillary clearance on Monday. Chemo for 5 months starts on the 29th of July, all going well. I was about to order caps in readiness and like you my hairdresser is on board. I wonder what the orginisations are for caps. 

priya_09

@Alfie...all the best. Hope the axillary clearence goes well. I had the surgery on 4th June and luckily it went well. No complains. Stay positive and lots of healing lights for you. 
Regarding the caps, I saw a few online but did not research much. Hope you find something for yourself lovely. 

WhiteLight

Hi Alfie, good luck with the chemo. The place online in NSW, where I ordered my lumpectomy bras from, sell lovely assorted headgear and give advice but I'm not sure if I am allowed to post it here as its advertising. I'm not sure how to message you direct from here.

Paris_24

@Alfie I understand the Cancer Council might be able to assist with headwear or wigs.  I used Starkles here in Brisbane bought mine online and have worn the little caps everyday.  Also saw that in the shops that sell breast prostheses, lingerie, swimwear that they often sell some caps too.  Good luck with your upcoming surgery and hunt for wigs or headwear.

Alfie

Hi all
Thankyou for your kind wishes.
Paris_24 I have looked them up they seem nice.
WhiteLight I don't see why it matters and I also do not know how to private message.

June1952

@Alfie and @WhiteLight

How do I send a private message?

There are several ways
to send a private message to another member of the online network.

1)
The
quickest way to send a private message if you already have the member’s
avatar/picture in front of you, is to click on their avatar/picture and the
below pop-up is displayed. Simply click the pink ‘Message’ button:

This will generate that
member’s username in the recipients box for you.

Write
your message.

Click
"Post" Message"

2) By clicking the Envelope
at the top of your screen next to your photo (On a mobile Device – click on
your avatar/photo; then click on envelope):

Click on "Pen Paper" icon to start a new
conversation




Start typing the members username in the
"Recipients" box and it will appear.

Write
your message.

Click
"Post Message"



3) If
you are on a profile page of a member you can just click pink "Message"
button to send that member a private message.

This will generate
that members username in the recipients box for you. Just follow the same steps.

Write
your message.

Click
"Post" Message".

Note: You can private
message more than one member at a time.

If you
are part of a private message and you want to leave the conversation, just
click "Leave Conversation". This will also "Delete" the
message from your Inbox.



To view
all your private messages click the ‘Envelope’ icon at the top of your screen photo
(On a mobile Device – click on your avatar/photo; then click on envelope). A
drop down will appear with all your messages. Click ‘All Messages’ at the
bottom of this drop down to view all your private messages