Triple Negative Breast Cancer support and advice

Hi @Can-bra welcome to the online network. As you have already seen the members are just incredible and are here to help you as much as they can. In regards to your questions about the TBNC support group, this group was on our old platform. The only groups we currently have on this new platform are all listed under "Groups". It seems that some old conversations are starting to appear that include some old links, sorry for the confusion.
You will be able to find information under our "tag" specific to Triple Negative breast cancer.
Please let me know if you need any help.
Ann-Marie

Hi, just thought I'd add some things I found were helpful - I have another disability as well so really couldn't have worked through treatment.  I have 2 young kids and my husband works away a lot.  I did get worse as time went on - it was cumulative - and they changed my chemo for the second half and I had bad reaction. I was always worse for week 1 then much better for week 2 and 3 - even though my bloods were not good and I was at risk for infection in week 2 and 3 I felt much better - so plan more rest time in week 1 and stay away from coughing kids and childcare centres in weeks 2 and 3).  I ended up having to get family to come and stay for week 1 of the cycle for the from cycle 4 onwards. (I was alright on chemo day and the day after while still on the steroids - that's when everybody assumed I'd want someone to come with me to chemo but it was the 3 -4 days after that I found most difficult)
I used woolworths home delivery - I have set up a basic shop list that I can order every time - 3 clicks and it's done - with kids to look after I didn't have the time or energy to walk around the shop
I paid a cleaner to come in weekly -  so at least kitchen and bathroom were hygienic
I was lucky that I had income protection insurance so my income didn't change too much and it helped pay for some much needed extras and I also had a small trauma/critical illness policy attached to my home loan (it paid about $10,000 for breast cancer regardless of if I was working) - might be worth checking if your super fund or home loan or credit card has that in there automatically - it really helped me lots
I cooked and froze meals in weeks 2 and 3 because there was no way I was well enough to cook in week 1 of the cycle and brought easy to prepare stuff and fresh fruit for week 1.  used the slow cooker lots, with microwave rice and vegies
I contacted the local Family day care service and arranged to have emergency child care pre approved including overnight care in case of emergency - luckily the couple of occasions when I had really bad side effects and had to go into hospital I had family and friends available.  But I did use the child care on a couple of occasions on the weekends for a block of 4-5 hrs just so I could know kids were happy and safe and I could catch up on sleep.
when my arm and hands played up (combination of effects from surgery and chemo) washing my girls hair became too hard so I just took them to the hairdresser once a week and paid to have them wash and brush the hair and plait it up for me
when I had issues with pain I was worried about driving and taking pain medications so I didn't take the medications - not a good idea - then a friend said why not use a taxi (I should have thought of that but when stressed and in pain you don't always think of stuff) - so then I kept pain under control better used medications earlier and it really helped
I got my nails painted once a week - with the taxol/ taxotere/carboplatin I was told if you use dark nail polish and stop the sunlight getting to the nail bed then you are less likely to damage the nails and have them come off the nail bed and with the peripheral neuorpathy I lost the co-ordination to paint them myself so just got someone else to do it
I now get a podiatrist to cut my toenails because of the peripheral neuropathy my fingers don't work well enough to cut the toenails safely
and don't forget to ask the breast care nurse for any info on support in your area

Good luck - hope this info helps and just take one day at a time and know that everyone is different and whatever you need to do to get through is ok - for me I gave myself a hard time about using childcare on the weekend - but really - it's better my kids have some extra childcare now and I look after myself properly so I am here for them for the next 30 + years - don't beat yourself up - be kind to yourself.

Hi Can-Bra,

I am so pleased to have found your post.  It seems we have a very similar - if not identical diagnosis and personal situation.  I have also been searching for information and support - specifically success stories for TNBC, G3, KI67 = 60%.  
I have found a closed Facebook group focused on support for young women diagnosed with breast cancer.  It doesn't specifically target TNBC but I have already found the group to have a supportive aspect - just with individuals sharing personal stories and events.  Let me know if you would like further info and I can send you the link. 

I am 44 with 2 young girls.  I was had by biopsy on the 12th Oct, confirmed on 13th Oct with TNBC, grade 3. 
I had surgery the following day.  Post surgery pathology confirmed TNBC, grade 3, KI67 of 60% and thankfully clear nodes and margin.  I met with my oncologist on Tuesday where I was advised I will have a port inserted and start Chemo on 8th Nov then genetic testing on the 16th.  

Like you, the timing for my work hasn't been great.  I was due to start a new and exciting role on the 10th Oct having left my old company on the 7th Oct.  Finally it felt like my life was heading in the right direction, a new home, a fabulous new job which was designed for me, beautiful family and good health.   It was on the 8th when my world was turned upside down.   My new company has been great with allowing me to immediately take time off for the surgery and recovery although I'm not sure how I can justify holding the role where I will need time off for treatment when I haven't had time to establish myself in the new role or organisation - or build up any leave options.  I went into the office 1 week after the surgery - it has been a beautiful distraction.  I am really hoping I can pull this off and work through as much of the chemo as possible.  If I don't keep the role, I'm not sure how I can support my family with the mortgage, my children's school fees etc.  I'm sure I will work something out, but at the moment my head is ready to explode with new information I am trying to absorb.

I know all treatment types are different and your treatment plan may be quite different - but I have been advised I will be going through 2 rounds of Chemo and then radiation treatment (or mastectomy - dependent on the outcome of genetic testing).  My treatment plan is  4 treatments of AC at 2 weekly intervals then weekly treatment of TC(? - hard to read the oncologist's writing) - a total of 5 months of chemo treatment.

Sharing treatment side effects - and most importantly tips on overcoming them with someone in a similar situation would be great and I'm happy to connect with you and share mine if you like as I go through these next steps.

For now, my most important focus is on keeping my head positive in the face of such an unknown situation.  Before the chemo starts I am taking one day at a time, enjoying my family and getting out and active to keep myself busy and most importantly for me - away from the internet (I have deliberately tried to avoid the internet searches - the general searching  hasn't helped me at all).  BCNA and sites advised by my surgeon are the only sites I now refer to - they deal with fact, geographically relevant information and people I can relate to.

Until 2 days ago, the thought of chemo petrified me - I couldn't mentally deal with the thought of putting a poison into my body and the thought of terrible side effects.  That was until I caught up with a dear friend who has been through chemo for a different cancer.  She told me to think of chemo not as a poison but as the drug that will save my life.  Without it, the options are not great, but with it, the odds are in our favour.  She changed her position to think of the side effects as ones that were necessary for the chemo to do its job.  Stay focused on the good that the chemo is doing.  Just this small tip alone has allowed me to move into a more positive position going into chemo.  

There is some really great advice in information in the previous responses to your post.  I hope you find the help and support you are looking for.  Where your friends and family have offered to come and help you, try to accept what you need - it will be good for both parties.  It's hard when loved one is sick - but when you're far away and unable to help it's even harder.  They will be happy to see you and feel they can support you and most importantly, you will have the help you will need.

Take care, 
Sharon x

Great to hear from you Sharon!  I have sent you a message!