First of all, thank you to all the women who have posted. This has been very helpful in understanding what is going on as general research has been scary so I am constantly uplifted by the stories I have read from these brave, strong women.
I also have stage 3 tnbc, have had lumpectomy and going for my second chemo today. Had a really rough time over the last three weeks with plummeting neutrophils and complications from recently diagnosed diverticulitis which combined put me in hospital for a week. I am 43, no children, and live remotely so have had to relocate to cairns to be closer to hospital for this next round.
Have had just a little nausea, thank goodness, but the fatigue and bone pain and gut pain has been intense and have only had a couple of good days leading up to my next treatment.
If there is anyone out there in far North QLD who also has tnbc would love to hear from them...I feel very far removed from anyone else with this.
Thank you again for posting, nice to know am not alone.
Comments
Hey Deb
Thanks for reaching out, you are not alone through this cause we are here for you. I am not in Qld at all so I am no help in that department but i am here for a chat if you need.
I was like you in that I suffered a lot of pain and fatigue with little nausea. I was on very strong pain killers and pain patches to try and keep pain under control. I also suffered nerve pain. I had no choice but to rely on the pain medications to get me through at that time. I found I didn't go far from my bed or the couch through my whole chemo treatment, not cause I didn't want to but I just wasn't up for it. I used to get really frustrated and mentally beat myself up over it where as now I look back and wish I just accepted it and went with it. There is plenty of time for getting back to everything when you are well again.
It is such a shame you have had to move closer to hospitals. I also live 400klms north of Perth so I spent my time commuting either by car, transwa bus or plane to Perth for my treatments and then spent 7 weeks in accomodation in Perth for my radiotherapy. Hubby worked away so I did the majority of my treatment on my own. It is doable but it was tough so I do understand what you are going through.
Do you have family and friends close to you who can support you?, I certainly hope so. I am also hoping you are able to connect with further support now you are in Qld. Cancer Council should be able to put you in contact with someone but i hope there are girls on line here who can help.
Thinking of you and wishing you all the best of care and attention, I am here for a chat if you need me.
Lots of love, Mich xoxo
Hi Deb
Welcome to the club - I am so glad you found us. We are here for you.
Like you, I was stage 3 TNBC when diagnosed, and it is scarey. However, the good news is that you sound like a Grade 2 if you had a lumpectomy (no node involvement) and that is good news. I am so sorry you are having diverticulitis on top of chemo - that must be hard. Have you tried starting the day with green tea with slices of fresh ginger in it - it is a real tummy settler and also great for helping joint stiffness. I also had an arrowroot biscuit. This combination worked for quite a few of us and might be worth trying.
Neutrophils can go up and down from week to week but they don't like you to go under 1.0 - although at .99 I still had chemo, and then bounced back to 2.1. They will keep an eagle eye on you, so don't worry too much - just go with the flow, because this roller coaster is going to go on regardless. One day at a time is the best plan.
It is rotten that you have to re-locate for your treatment, but worth it to get top care. Come online whenever you want company - we will be here.
Thinking of you. Big hugs. Michelle x
Hi Deb
Welcome to the club. I am glad that you have reached out to us.
Staying positive is so important to your recovery. I found during my treatment the support from the oncology nurses and Breast Care Nurse invaluable. Sorry to hear you are suffering from diveritculitis as well, I have Coeliacs disease so I know what you are going through on that front.
I was diagnosed with Triple - and Estrogen + breast cancer 2 years ago and yes it is very scary. I found the more I understood about my treatment plan the more I felt at ease and was willing to accept that I might have to be unwell in the short term to recover in the long term.
You might like to join a support group at the hospital so you can meet other women who are undergoing treatment as well. You don't need to go through this on your own.
Take each day as it comes and look at the end goal - full recovery!
Thinking of you. Pam x
Lots of us out there!
Hi Deb,
I'm 18months out of treatment now for Stage 2 grade 3 Triple Negative breast cancer. I'd like you to know that there IS light at the end of the tunnel. I'm back at work now, and feeling really healthy and happy. Last year I had a full breast reconstruction and I've made dietary and lifestyle changes that keep me feeling positive and well.
Yes, chemo is the worst. But it does end and then life begins again. I found a lot of support through Cancer Council Support Groups and BCNA forums, blogs and conferences. This website is the best! Any questions? Just post, and someone will answer them for you.
It sucks that you've had to move from home from treatment but try and find some positives in it. There is always a positive if you look hard enough! That's what keeps me going.....
Look after yourself. pamper yourself when you can, and don't ever feel GUILTY for saying no!
Good luck with the rest of the treatment.
xx
One of us
I agree with the other ladies . Stating positive having control finding out as much as you can. I also go to support meetings and shortly going to my first conference in Launceston Tas and looking so forward to it. Wishing you all the best with the rest of your treatment. Be kind to yourself take care Deb
Hello Deb
I was also a stage 3 triple neg, and had a lumpectomy. I also had all of the lymph nodes removed from under one arm (only one was positive). I really feel for you having to travel away from home for your treatment, I hope you can find plenty of support. I have now finished my chemo & radiation (last December) and Im back at work and feeling good. So try and hang in there, there will be times you feel pretty low but just remember what you are working towards and try to focus on one goal at a time. I hope you are getting your pain under control and wish you all the best. Jenny xx
thank you
Thank you for all your comments, yes, I am not alone and feel better that I have joined which for is a big thing as I am one to never ask for help and have always been so independent. Sorry for confusion, grade 3, not stage 3. Good news is I have settled into a house in Cairns, now have internet up and running and my sister is here from Perth to help clean up the place. As my neutrophils dropped to .11 last time it Is a huge relief to be close to hospital, chemist etc and to have my partner and dog with me..am feeling a lot less stressed altogether and ready to look into local support networks.
Thank you again ladies for the hints (ginger etc) and for the reminder on positivity, regardless of where you are just to have a connection helps me get back on track in my mind and I am seeing through the fog to the end again. :)
hey Deb
That is excellent news, well done. I am glad things are falling in to place a bit better for you now and you have your support around you. My dog and my chickens were my saviours some times.
It is a bumpy track but you can do it. Keep in touch.
Lots of love, Mich xoxo
Thanks Mich, cute pup, is great to have mine with me here also, unfortunately I am back in hospital with more complications but knowing he is not far away helps.
Oh No, what a bugger. What has gone wrong now?
I sorry to hear that and hope you are okay.
Thinking of you.
Lots of love, Mich xoxo
Thanks Mich,
Temp has gone over 38 and they found an abscess in my gut on CT so back on antibiotic, and back "inside" for a few days minimum. On day 7 today, at least neutrophils are 1.2 this time!
Sister goes home to Perth today, partner taking another week off work and looks like being made redundant, which is not a bad thing at the mo, need him to run things while I'm out of action. See, positives, I'm getting good at this! :-)
Deb
Good girl Deb
You run with them positives. It is one thing that we learn to do from our BC experience.
Sad your sister has to return to Perth but excellent your partner will be there for you.
I wish my hubby had been made redundant while I going through my journey. He has been made redundant just recently and we have bought a very lil place in Perth so it has been great having him home to do work around the house and having with me for a change but time for him to go back to work now. We been looking for work for him but nothing has come up yet. Hopefully soon but...........
Enjoy having your man by your side to help you get through this.
I hope you are released soon and you continue to get well.
Lots of love, Mich xoxo
Fighting Spirit
Hi Deb
So sorry to hear you are back in hospital. On the positive front it must be great to have your partner by your side.
Good news that your neutrophils have gone back up.
Keep drawing from your inner strength and you will get through this setback and be back on the road to recovery in no time.
My thoughts and prayers are with you.
Cheers
Pam
Remaining positive
Well, looks like I may be stopping chemo after two cycles with two still remaining. Am still in hospital on antibiotics for the diverticulitis and abscess which has become the more serious threat but they are discussing stopping any further chemo and going straight to radiation while dealing with my gut issues, which could involve surgery.
Still need to hear my oncologists opinion on this, who was already prepared to postpone and the positive side of this is that I should be back to my temporary home in a few days, back to Freddy (dog), my partner, my piano and food control (really, this hospital food!!!).
Love and good wishes,
Deb