4 cycles EC finished

Dear Bel,

Thanks for the chuckles. You get it.

All that madness has been replaced by different madness.

One challenge changes for another around the holidays. :)

Transport issues have been resolved and we're using another agency. I am an indigenous woman, so I really need to  have only indigenous women, from Wangary HomeCare caring for my health during my treatment. If I choose not to have any contact with this  troublesome indigenous man again,then my lovelies from indigenous home care would support this decision. I previously had an indigenous man attempting to organise my transport. He did a job that was creating more trouble and problems in my life. When Angela organises my transport it is done perfectly.  It is my privilege and right as an elder woman, especially regarding breast health issues, to only have women around me. In our culture, it is the women who look after and care for the elder women and the men care for and look after the men. When Angela says she will make my transport appointments, or bring me home from treatment herself, she does it. Luckily, my Taxol is on Wednesdays which is her day to be in Sydney. She brought me home today and gets that I need her emotional, mental, spiritual and physical support.

I understand about the clean bedding and pj's and floor. I am so blessed as I have been allocated home care to come each Thursday to help with 2 hrs grocery shopping and Fridays 1hr cleaning.

I thrill over Friday nights shower, clean pjs, clean floors, all work is done and completed. During the week I listen to Isira's Power of the Horizon meditation or Bowls of Peace or Awakening to the Self. Isira is an awakened indigenous woman from Adelaide, who holds satsangs in Crows Nest, NSW. Isira has spent time in Tibet as a buddhist nun and now works with the UN, representing indigenous nations and is a guru and absolutely beautiful Being, radiating unconditional love and healing to us all. You can find her meditations at Isira.com These help me to come back to spiritual stillness and my radiant limitless true Self. The floors can stay as they are. I forgot to put the rubbish bins out since before christmas, so today they are out, ready for Friday pickup.

Vanessa Benicky from Optimal Intimates fitted my new bras and full sized prosthetic yesterday, so I wanted to tell the whole world today. It is so comfortable and my pain has gone completely from having the proper support and properly fitted bra. Vanessa also taught me how to wear my bra properly to support under my arm where all my lymph nodes were removed. I don't take the panadol osteo tabs at all now.

That's the story of, that's glory of Love. To quote the Divine Miss M. Vanessa has it. I love her. Such an amazing lady. A complete angel, loving her healing work. I wish we could all get together and nominate her for Woman of the year.

If Vanessa has helped any of the ladies in Sydney, please help me to nominate her, so we can vote for her as Woman of the Year. Her endless joy and positivity along with true love for her work, makes her the ideal candidate from my viewpoint.

Yes it can be difficult to chillax when life is like being a bee in a bottle before chemo.

I have people telling me to slow down and yet, if I don't do it, it doesn't get done. I am the only one apart from Homecare and they only come for 1 hr to help. I have to scrub the toilet on a daily basis and sometimes if I am clumsy and accidently spill my cup of tea on the clean sheets, then I change them myself, just slightly pushing the limits. I don't rush if I can help it. I really have nowhere else to be once the medical appointments are completed in the week. Now is the time I can spend relaxing, sharing how this week has been.

Thanks for responding with such honesty and humorous understanding. Only we know. I love being in our secret society. You're so special to me and I love you as my sisters and send you my eternal gratitude and empathy with prayers and blessings of Divine Love and Light always.

My potassium level was still low today 3.2 after last week 3.1 but I still had my 3rd dose of Taxol. Overall, the week has not been how I thought it might be and yet everything's worked out just wonderfully so far. Apart from my lovely Dr Tristan Barnes finishing up as Dr Gomenski's registrar in early Feb. I am a bit sad, as I love Tristan, always standing in integrity. She has always been honest with me about my reactions to the chemo. Being a complete sweetheart and supportive when I lost my dog of over 15yrs. Beni was 127yrs 48 days human age and 17yrs 48 days doggy age. The bombs and challenges just keep coming and yet listening to Isira empowers me so that today I didn't sit around waiting for the agency to stuff up my appointments, I just got out the door at 8am and caught a taxi to the hospital instead and didn't miss seeing my lovelies at the Day Unit and Northern Sydney Cancer Centre.

 I told another patient, who asked how I am, "I am glad to be here today." Who says they're glad to be at the Day Unit for chemo? I felt so empowered and successful that I had made the right choice to get to the Day Unit by myself. The agency driver phoned me at 9.05am and I explained to her that I didn't know that she was coming, that I had to be out the door at 8am, rather than wait for her after my Monday had been so mucked up. I apologised to her and thanked her for coming to help me, but I was in the chair readying for my chemo treatment. That Angela from Wangary was bringing me home after seeing Tristan. We have changed transport agencies now and Angela has taken responsibility for organising my transport to and from my medical appointments. It is easier and more simple now. I can trust Angela's integrity and word. I love and respect her. She does what she says she will do. Such a dear sweet kind hearted angel.

Blessings of Divine Love and Light to all, with eternal gratitude for your understanding and sharing with such wonderful humor. Thanks for the laughs, Shoonyananda. <3 <3 <3 :))) You are the wind beneath my wings. Love, Joy, Peace every moment of every day and night to all of you

My brother is a doctor, and he said that Panadol works better if taken consistently over the period when needed.  I needed to have pain relief for all my chemo.  So I would take it consistently through week one.  Being mindful the strength and amount allowed to not ruin you Kidneys or Liver!  But its your body and your choice.

I smiled about how you were feeling about the frustration of waiting for people to turn up and not showing, or the inconvenience of having Chemo around Christmas and New Year.  It was an issue here too last year, for me, and I was even given a script for antibiotics just incase.  They also were difficult, medical staff, to track down over the week ends.  I had to use the emergency mobile phone number once when they gave me an extra dose of FEC when I was due to change to Taxotere.  Watch the paperwork in hospitals, and know whats going on!

People dont realise how emotional it is to feel so sick and not get stuff done.  I recall a day on the phone in tears over how bad my floors were getting!  I had to wait until I felt better, to clean the shower every third week.  Relied on sterilizing everything with squirty bottles of disinfectant inbetween.  Clean sheets made my day, and clean PJ's.  I didnt have a cleaner, just one husband who could only cope with going to work and worrying about paying the bills.  I had to teach myself how to chill, relax, and not worry.  That is one skill that is so difficult to master.  

When you dont feel strong enough to do something dont.  You do get your energy back, and then, you will do too much to make up for the time you couldnt.  Sound familiar ladies?!!

The instant menopause, hormones, and medications all add to a loopy time that removes our memories too;.  so I had to write EVERYTHING down, and still do, in a Collins Diary .    

I hope you have a better day, and just remember, any one that hasnt been through would never know the circus we have joined!  I have made some wonderful new friends via the local Cancer Council, and they have kept me sane.  The volunteers at the Cancer Council are awesome, and you can even be matched up over the phone with counsellors or volunteers.  Pick up the phone, I did, many times.  When you feel well, get to the free counsellors, thank goodness for them, it made a massive difference!  Try to find a Regional District Nurse who will visit you home for free if you ever need a nurse to come to you.  They do that in Launceston.

Wish you well, xx Bel

Dear Parkrunner,

Thank you for posting about the Taxol blackening your big toenails.

I asked the chemo nurse and a gp and they were so unconcerned and unphased by the look of my nail.

In fact, the chemo nurse said that the nail issue was nothing to do with the chemo!!!

It saddens me that these are words that other less inquisitive ladies may take seriously.

The gp wasn't actually my regular doctor. She insisted that my oncologist is the one to ask about the prosthetic and new bra.

I just am feeling extremely critical of these women.

I had a week that began with a lie and stuff up regarding my transport, then this followed through to the end of the week when my homecare cleaner was booked to clean at 10.15am Friday morning. No arrival so at 10.50am I had to phone homecare to finally be told that cleaning would happen after shopping at 3pm.

I busted myself to prepare for the cleaning at 10.15am, for absolutely no reason.

I phoned to ask when my doctor would be available, as it is the holidays. I was told by one of her receptionists, "This Saturday, between 8am and 4pm."

Jumped out of bed this morning to leave home at 7.25am to see my beloved doctor. Got to the medical centre to be told that she wasn't there and wouldn't be there until tomorrow.

Even a chemo brain understands the difference between Saturday and Sunday. I've spoken english my whole life and this was the final crap for the week.

This afternoon was great as the washing has been folded and put away. I managed to watch Fellowship of the Ring and feel satisfied that tomorrow will be a much better day.

I have my second dose of Taxol on Tuesday, if my bloods are ok Monday.

I really have no reason to be grumpy about anything tonight.

Just a shower and clean pjs for bed and then everything will be perfect. In fact, they're perfect right now.

My mouth is clean after brushing and rinsing. My tummy is full after yummy dinner. I have everything I need and I am content.

How did you treat your nails? The gp reckons I just need to let it grow out. I will have to wait a couple of months and put teatree oil on them. I don't have any sort of infection or fungal growth on my feet.

I read that having Vitamin B5 is helpful?

I trust the info that doctors and nurses give me, not so much after this week.

The issue with the transport on Monday was covered by my sending my bloods and chemo schedule to the person responsible for organising my drivers. He has no excuse to not get it right now. How simple did I make it for him? Simple enough that a child in primary school could understand it. :)

Happy New Year if I am unable to come on line before. Am still feeling tired from AC and unable to do my arm exercises each day. I still do my best to remember to do the slide up the door way and to pull my shoulder blades together. I helps stop the pain and aching under my armpit.:)

I stopped taking the panadol osteo tabs 3 times a day and this is why the pain crept back in.

Now when I feel the pain, I have a couple of the panadol osteo tabs(once or twice a day), rather than just having them for the sake of having them. They're working better this way and I feel the benefit of them relieving the pain.:)

Hi Tracey

We've already chatted about this but I thought I'd post it so others can see :-) I had 4 rounds of AC, followed by 12 weekly Taxol (I'm up to round 9 of that later this week). The AC knocked me around a bit (but not as badly as I feared) but so far the Taxol has been a bit of a breeze. I'm a little tired, but working full time (3 days in the office, 1.5 days at home then half day off for the treatment). I find I can do a day in the office quite easily but then I'm tired the next day so I've learned to stagger my outings and activities through the week to make sure I have plenty of down time in between.

The worst thing with the Taxol has been my big toenails starting to blacken and lift. I'm hoping to get to the end without actually losing them. No nausea, no heartburn, no gastric reflux, no headaches (all things I had in mild form on the AC). 

You must be nearly done with it now - yay all of us!

Hi Tracey

We've already chatted about this but I thought I'd post it so others can see :-) I had 4 rounds of AC, followed by 12 weekly Taxol (I'm up to round 9 of that later this week). The AC knocked me around a bit (but not as badly as I feared) but so far the Taxol has been a bit of a breeze. I'm a little tired, but working full time (3 days in the office, 1.5 days at home then half day off for the treatment). I find I can do a day in the office quite easily but then I'm tired the next day so I've learned to stagger my outings and activities through the week to make sure I have plenty of down time in between.

The worst thing with the Taxol has been my big toenails starting to blacken and lift. I'm hoping to get to the end without actually losing them. No nausea, no heartburn, no gastric reflux, no headaches (all things I had in mild form on the AC). 

You must be nearly done with it now - yay all of us!

Hi , Thanks for the info, that is fantasic that you are handling the taxol so well. I can only hope i get the same.