Month 4, Day 19: Smelling the roses on Eliz birthday

Hi, Still here and loving it.

Had a great weekend in Town for Elizabeths birthday. We wine and dined and pictured like there is no tomorrow, rings a bell! Seriously it is very hard especially for them. By the end of the weekend I realised that I need to take more care of what I say and do as with this process dragging on, it is easy to be all about me and have Elizabeth and Mitch miss understand where I am sometimes coming from and visa versa. There is I now realise a constant layer within layer within layer of comment and its interpretation. Very difficult and complicated when one starts to think deeply about it. However I think we are all still tight.

My query about blog use as I was only judging by the comments is clearer. I added Google Analytics so if you are interested it tells me in the last 7 days I had 153 visits, 393 page views 50.3% were new visits and 3 min and 2 sec on average time spent on site. Seems I am not alone, thanks. 

On my activity around The Right to Choose for terminal patients it is still bubbling along well. I am at the stage of trying to breakthrough a bit in the press, my letter to influential people is ready to go and I will start mailing at the rate of 5-10 a day. My reentry to Facebook and Twitter @28short have both yielded some opportunities and interest. Feel free to engage and assist.

Pain 0/10 Mental Health 10/10 Physical Health 8.5/10 Life Enjoyment 10/10

Month 4, Day 15: Must watch Dallas Buyers Club

Hi, Today something a bit different. As I am among other things now working towards Choice at end of life  I attach a clip that really makes some sense. Context is it is out of Dallas Buyers Club, great movie and is a Californian Judge making comment about possible drugs for treatment of AID’s, NOT ME.

There are 2 very interesting things, 1 this clip and the comment you can make your own views on and 2 in the movie there is a scene where a key player lies alone and dying in a hospital on a morphine drip, watch the movie

Anyway enjoy the clip if it works.

http://pgs28.blog.com/files/2014/05/anything-that-helps3.mov

Pain 0/10 Mental Health 10/10 Physical Health 8.5/10 Life Enjoyment 10/10

Month 4, Day 14: Scan result good

Well well well, I have just chatted to Dr Des my interim oncologist and the scan news is all good. Tumors smaller , lung opacity clearer and wall thickening thinner. Bottom line is Chemo is having a good fight. This leads to the inevitable ? about planning ahead. Long and the short of it is story does not change but healthy duration may as the goal posts have changed, therefore keep planning ahead. Fisrt time I think I have had better than expected results, amazing.

On my current desire to work towards right of choice at end of life I met with Dr Rodney Syme at his home yesterday. Amazing gentle man who is passionate about bring change especially in Victoria as that is his base and the state government is responsible for the changes in Law. I committed my support in working with him and his supporters in trying to raise this to the forefront of debate to cause change. He gave me his assurance that he will support me in my right to choose my end of life process when the time comes. A very big commitment he is happy I make known.

Driving Choice at end of life is going to mean letters, interviews if possible, connections to those who can help and who knows maybe even a meet up on the steps of Vic Parliament house. Lots to do in this space and ideas, advice, contacts welcome. Current plan is mass mailing of a heartfelt letter, a trial to raise an opinion piece in the newspaper, contact with specific politicians , social media activity facebook and twitter @28short etc.

Another learning on this journey is the need for a plan. I find that as time is somewhat more precious there is a huge need to have a few weeks mapped ahead so I don’t look back having done nothing. It is about doing meaningful things. A few weeks back we were not sure what next but now have a great mix of overnights at Crown for Eliz birthday, a short trip to NZ, a short trip to Port Douglas and a few days on the Gold Coast. This gets me to mid late June and with some other commercial activities thrown in and the above campaign makes for a very satisfying agenda.

By the By the Blog site sometimes seems to crap out. If so just try again next day

Pain 0/10 Mental Health 10/10 Physical Health 9/10 (great can results get .5) Life Enjoyment 10/10

Month 4, Day 12: CT scan feels like warm wet pants, love it

So a CT scan. I just love the warm feeling in your pants when they pump in the contrast.For those who have not done it you lie in a big machine on a table that slides you in and out. Everyone goes from the room and then the machine slides you in and out and tells you to breathe, hold and breathe. After that a few times they give you a contrast drug and do it all again. The magic is the contrast is like getting filled with a river of warm Brandy and it seems to be especially sensational around the bottom regions, simply spectacular. Lasts 5 minutes.In my case as I have no real worry about what they will find, though it is sure to be interesting, so a great 5 minutes.
Also spent some quality time with a friend helping me on the govt relations and rooms part of Dying with Dignity. Have my draft letter now fine tuning and next steps.

Pain 0/10 Mental Health 10/10 Physical Health 8.5/10 Life Enjoyment 10/10

Month 4, Day 11: Family weekend in Myrtleford

Just back from 3 days in the country with Elizabeth’s family and friends, doing another you never know, see you sometime. These are all strange magical days and the endings always seem incomplete but that is how it works. Lots of wood and fires in pot belt stoves around Beechworth, Stanley and Yackandander, Bright and of course Myrtleford, beautiful places this time of year, but the slight reduction in air quality from smoke goes straight to the lungs. It is funny how a change in own feeling re breathing of such dramatic proportions just becomes a new normal. In this world nothing causes fear or panic it is simply change and another thing to experience.

The Chemo early in the week is having the normal effect, mouth and lips go smooth and tiredness slips in, by mid week we will be through that, and simply manage with a few cat naps as I go. Cats are lucky so long as you are not ours, Speckle who like me is racing to a finish, naps are great.

Great to be driving up the highway and back with Eliz, lots of chatting and good fun especially since without a licence till next month I just sit there. Amazing there was a chance a while back I would never drive again and now I am negotiating with Mitch to get my car back!

As it was the last Mothers day for me I felt for Elizabeth and it felt it a bit special. Fluffy even went over and above with a home made card for Eliz. We all seem to try that bit  harder now in many ways, should have done so years ago, so take note!

Also had a text from a friend who attributes a spontaneous 1 week holiday to Bali with his wife to my coaching, tic toc tic toc…………beat the clock

Just done BBQ dinner in backyard with dogs to chat to , cool clear night and backyard pool and garden lights burning bright. Wonderful. Interesting week coming and a few topics I look forward to exploring see you then if you read…………….

Month 4, Day 6: Red Dust and Coles Express – amazing story

Today was into Cabrini for Monthly big Chemo hit. Process now a well worn path, key is drink lots of water day before so easy to whack into a vein. First a bit of saline, feels cool up your arm, then the stuff mixed with 2 other drugs ,one to help nausea and the other to just help. It does have a speed up element so quite helpful later in the day like now. This one feels cooler up your arm, then a quick flush and out.All up 2 hours. I took Chemo head section leader a bunch of white roses, pays top be on the good side of sharp needles!

Also booked in Monday for a CT SCAN Chest ,abdomen and pelvis. Should be good as it will give me a comp check on the January one. Good to let the enemy know, you know where they are, and what they are doing! I also quite like the scans, more about that Monday.

No responses to the Abbott request and Eliz also sent off a later to John Faine on 774, so still plugging to be an activist for Terminally Assisted Suicide. Keen to hear all thoughts for and against, and get a sense of am I talking to myself a few or a lot:)

The new Boss of Coles Express has led an initiative we started some time ago about making Coles Express relevant in the indigenous space in a meaningful way. We hooked up with Red Dust, great small team and the Daly River Community. Big things will happen but some team members worked with them and red dust on the ground recently, have a look at the film they made in the week there, is simply wonderful. key in the link

Finally a bit in the news on Coles and ACCC. I have to many causes but don’t believe the papers and don’t trust ACCC, they are bigger game players than what you find on House of Cards. If Simms was slightly fatter he would be Frank Underwood!

Pain 0/10 Mental Health 11/10 Physical Health 8.5/10 Life Engagement 10/10

Month 4, Day 3: First chat with Dr Rodney Syme, who knew where this would go

Interesting day Friday. Through my past relationship and fervour with Coles and Coles Express around Daffodil Day and raising money, last year CEXP raised $825K, I offered to assist them in any way I could though I am retired. We had a film crew fly down from Sydney and do some interviews and lots of filming and photos. All to be used in the daff day efforts this year. Was a lot of fun and shows you can always find another way to exploit this situation in a good way.

I also got to have a chat with Dr Syme. Lovely man and Eliz and I are looking at ideas to see if we can’t add something to the debate. Also had a great night at Crown and Nobu with Mitch and our favourite female friend, should have not had the final cognac!

Pain 0/10 Mental health 10/10 Physical Health 8.5/10 Life Enjoyment 10/10