Still going (pretty) strong

A few more very boring days in hospital later, I am back home and feeling pretty good again. Addison's syndrome now, another rarity. Adrenal gland not doing the right thing for a few days and my salt level is dangerously low. The doc's have got me back on the right meds and lots and lots of salt. This has made a for a big improvement, let's just keep it this way, I have KL to go to very soon! Still very happy to be back at home, living independently. Got things to do.

I hope all my 'team mates' are going as well as can be expected and that they have lots of good things happening for them too.

Love to all xx

The Good Life

Living the good life currently. On the medical front things are steady. Just keep up with my medications and am feeling really good. I have a lot of my energy back which is great, so much that I have just started the 'brazillian butt lift', 2 inches higher in 6 weeks, we'll see. I have done 10 minutes of the warm-up, and am going to do 15 minutes today. Gotta get a bit fitter for all the dancing planned for my birthday party on May 4th. It's going to be belated, an 'on the way to 50 party', as I will be 47 next week. This has been fun to organise, almost like a wedding. I have a fabulous venue, live jazz band and wonderful caterers. Also a photographer. A small guest list of about 50 close friends and family as way of saying thank you for all their support.

A lot of other lovely things lined up too.  Nick and I just went by train to Kalgoorlie for a few nights and had a great time, saw the Superpit, had chinese massages, great accommodation and also found a nice park where peacocks were roaming with a large lake filled with ducks. The oldest hotel in town, "The Exchange" was where we had lunch.  Still to come this weekend is a girls catch up at the new garden bar at Crown casino. Two Gentlemen of Verona at the UWA on the 2nd March, Dinner for family next Monday night at Pronto for birthday dinner. Followed by Oliver's christening on the 3rd March, then unbelievably off to Kuala Lumpur for 3 nights on the 4th March for a shopping trip with Sally. This should be awesome, we are staying at the Mandarin and I look forward to finding the perfect cocktail dress for the party.

Love to all xx

So much more to come

What a glorious holiday we have just enjoyed as a family. It was gorgeous weather and we had an absolute ball. Did so many fun things including an amazing bush/beach horseride for 2 hours, I thought I would really struggle since I have not ridden for years, but it was wonderful. The kids loved it and Nick even was trotting and having a swim on horseback in the ocean. Also jetsking and donuting (for the kids, not me!) and eating out breakfast, lunch and dinner for beautiful food. Our accommodation was so nice I have booked for next year for 7 nights, 5 was not quite enough!

I am feeling so well at the moment, better than last year before the op. It is so overwhelming to feel so bright and happy. I am sharing the love at every opportunity.

I have my busiest time booked up between now and July, I have lots of great things planned. Nick and are are off to Kalgoorlie this week for 3 nights. On the Prospector train and out to look around very interesting Kal, with the superpit and mine tours, it should be fun.

I hope everyone is travelling as well as can be expected.

Love to all xx

She is BACK

Well there is a light at the end of that tunnel ! I have had the most incredible, horrible journey with 4 or 5 hospital stays since returning from Sydney. But we have finally got things right. This feels absolutely amazing. The care I have had in WA since returning has been 5 star all the way, the staff and doctors have been out of this world. My meds are adjusted perfectly and I have put on 3.2kgs in less than 2 weeks, what a difference this makes!

Thank yous will never be enough to the people who have been caring for me.

On a great special note, we are off on a family luxury holiday this week for 5 nights at Magnetic Island. I think we are ALL looking forward to that !


Love to all xx

Words are never enough

Six weeks post surgery and still in hospital. This has been and continues to be, the worst experience of my life so far. But pales in comparison to the heartbreak within the Jahner household today. Eric, Eli and Reese lost their beautiful, courageous wife and mother to this insidious disease. 35 is way too young.

I have had more complications than I care to mention after the MOAS and HIPEC, also the surgery was unable to clear my disease, which of course makes it feel like I should never have had it. Being so far away from home and the pressure that this puts on my family makes this even more difficult.

Please send me any positive vibes you have spare, I need them.

Love to all xx

How to get out of 6 weeks of housework (minimum)

OK, so finally booked and as ready as one can be for the quintessential trip of a lifetime. Sunday morning at 11.30 my mum and I will fly to Sydney. So grateful to have secured accommodation at Bezzina House. This is a wonderful facility for travelling cancer patients, self-contained and directly over the road from the hospital. Thursday is O-day. So two glorious spring days to spend shopping with my mum I figure, Wednesday will be bloods etc and early admission Thursday. Wish me luck.

I am sure I will be nervous on the actual day, but really I am feeling positive and very focused on the healing and recovery. Negotiating the childcare needs and all the other things required to be away from home for 6 weeks has managed to keep me quite occupied!

Love to all xx

Patience...and Ativan

Glad I did not bother posting about my surgery date. I'm floating around at the end of that tether, waiting.  People are always the root of the problem. This saddens me so profoundly. Great communicators are selling cars or working at Telstra. Or Boost Juice. I am 100% confident if the guy who sold me my new phone said he would 'get in touch', 'ring me', or 'email me' I would have heard from him. Crikey those young crew who work at Boost Juice come across as more organised and friendly.

I was told my surgery would be 11th September, tomorrow. I chased up the Nurse Coordinator, who politely, is abso-fucking-useless. Vaguely she acknowledged me and said she would send me an email. Well if she cannot put together a sentence on paper, I am starting to get anxious. Again I rang her this morning, to be told, vaguely, that my surgery will 'probably be next week' and that she will definitely get back to me today. We'll see.

My confidence level has dipped and anxiety has swept over me like a wave, all because of one person and their abysmal communication skills. 

Love to all xx