Day 43: Final Post

Hi, my beautiful husband Pete died this morning at 12:20 AM. He died peacefully and I was privileged enough to be sitting on his bed holding his hand at that time. Pete’s decision to opt for Palliative care brought him to a place of calmness and serenity and for all of us, safety and security. It allowed Pete to relax, stop fighting and go calmly to his happy place. Thank you all so much for your constant love and support, it has meant the world to us.

As a family we will continue to strive to achieve Pete’s dream of seeing Senator Richard Di Natale’s Dying With Dignity Bill become Law.

Elizabeth and Mitchell x

Day 38/90: Admitted ourselves to Palliative Care, what a great twist

We decided this morning it was the right thing to do to admit myself to the great Palliative Care service offered by the great hospital supporting me.

Clearly things are getting a lot tougher and part of choice is the joy of continually taking them. Where to from here. May well follow the time honoured Palliative Care traditions and if it does, this goes to reinforce the value of choice is in the journey and not the end.

Richard Di Natale’s bill is just so important for these reasons, as is my documentary, and the efforts by all dying with dignity organisations pushing for change throughout this country. Not sure when I will send the next blog.

Stay tuned.

Peter

Day 36/90: Offline literally! Pneumonia, Emergency all day then released top home hospital service

Happy Xmas Eve, I have had a lot happen in the last few days. Thank goodness the PM got to me in time, amazing how the political focus slips when life and death rear their head and toss it around like a black stallion with a long silky hair-main in a Meatloaf or Ferarri advert.

Story goes a little like this………Sunday night woke up 3am with temp up too high, a bit delirious and very hard to breath with lots of pain in chest around coughs. Elizabeth managed me through this as I took a bit more morphine to enable me to breath and can’t remember much more than struggling with suffocation. At least I know now, how hard that is.

Monday Morning we went to emergency and stayed all day. They did X-ray, bloods, CT scan and it was clearly pneumonia and oxygen in lung intake around 80. They want 90 and close to 100 normal. This all led to a discussion around the view was I should be admitted for 3-5 days and take a dose of intravenous stuff combined with with pills for 10 days to get on top of the pneumonia. The very clever ER doctor and mine however combined to decided going home was an even better and I could do so on their Hospital home service. Nurse daily to administer observations and intravenous top up and doctor at another point daily to talk, check and generally assist. Oncall for emergencies. Amazing service and why we should all be up for full health care insurance before buying booze and fags. I don’t smoke by the way! We then got to go home and I was home in bed at about 5pm Monday, very tired, a little unsure and somewhat apprehensive. Is this the start of Niagara falls?

Monday night very difficult mix of coughing, pain, morphine and low level suffocation events. Morphine and staying calm gets things under control but the journey is scary and one that can only be managed by learning.

Tuesday doctor and nurse came round. Did the bits we needed, discussed the difficulties of the prior night and learnt a bit more. Was a pretty long and tiring day and the first one for 5 years spent entirely in bed. This is certainly not a good thing to do from a physical or mental point of view, and to me feels like giving up. It also cause’s pneumonia phlegm to build up and become more problematic. This was evidenced by more coughing, lots of blood tainted flem, cleverly spat into a red bucket, well it is XMAS!  and some short busts of nausea. The drugs to hit the pneumonia however kicked in over the day so last night though difficult, was better. Tonight fingers crossed I don’t spit blood at Santa, red suit…no!

That brings us up to this morning. I awoke feeling pretty average but got up, and generally participated in a bit of normal activity, Jeremy filming bits, drop over of a few people for xmas cuppa, one all the way from New York who I have not seen for 15 mths, doctor and nurse came at different times but both found me up and about and I think I have dodged what was about to become a big constipation issue which is good. Morphine and codeine require a plan around constipation so go Movicol as a minumum. All this may be a bit graphic but the ideas is to let people know more so maybe it will help someone somewhere over the rainbow who knows Dorothea.

Game from here and ? are.

1. Can we knock over the pneumonia and regain strength. Yes and in 5-7 days

2. Does it change anything, thoughts etc. Yes it sure makes suffocation a scarier thing. Also I continue to be impressed by the hospital system I am in and people who are in it they are phenomenal

3. Have I made up my mind around taking my own life or going the natural causes way? No I have not but can see the Choice option offers timing dilemmas that will be an interesting part of what decision is taken so maybe it is not as linear process as I had thought

4. How are Mitch and Elizabeth? Both huge support for me in my unit of 3, and they seem strong as a uint of 2. Both teams are in pretty good shape. Should put up a mean Xmas day srrum, I think thats a sports term that applies, let me know if I am wrong.

Finally the Prime minister asked me about my pain score at 0/10 and assumed, as it is counter logical to the others, I must be in great pain. As of today pain is to be read as all the rest, 10 is fantastic and 0 is not good at all.

Hope this update does the job. It is one of the major reasons I created this initially so I am getting great bang for my blog so to speak. Have a great evening and day tomorrow, I will:)

Pain 9/10  Mental Health 10/10 Physical Health 5/10 Life Enjoyment 9/10

Day 32/90: Tony Abbott commits to free vote on euthanasia

I have featured in several Fairfax newspapers today including The Age and the Sydney Morning Herald regarding my phone call yesterday with Prime Minister Tony Abbott.

Please click here to read the newspaper article titled ‘Tony Abbott commits to free vote on euthanasia’ written by Kate Hagan.

Pain 0/10 Mental Health 10/10 Physical Health 10/10 Life Enjoyment 15/10

Day 31/90: PM Tony Abbott rang me for a 30 min chat on Dying with Dignity, fascinating and helpful.

Today I had what I feel was one of the most worthwhile chats to bring Choice at end of life for the terminally ill and intolerably suffering. The Prime Minister devoted a quality half hour to understanding my point of view, asking questions to further his knowledge, empathising with my personal circumstance and laying a few of his cards squarely and quite rightly on the table. So how do I do that conversation justice. I think points will be best.

1. The real biggie for me was , The Prime Minister is happy to be quoted that I can be reassured that if Senator Di Natalie’s bill comes to the house it would be under terms of a free vote from his perspective.
2. He and I come from different idealogical backgrounds so in his own instance he would not vote in favour,
3. He feels the laws and current system offer great support but does recognise there are a lot of grey areas, yet he feels this may not be a bad thing.
4. He believes law enforcement would not go out of their way to take action against someone who did exercise choice or assisted someone in those circumstances unless they were doing so in a sensationalistic way (he did say however it was his bush lawyer view).
5. He has plans for a very busy 2015 taking the country forward on many fronts and at present DWD law change is not part of that agenda, unless public and parliamentarian opinion makes it so. He did say however that if there was a readiness to bring it on then it will come on. He sees some process parallels to this and the current Gay Marriage laws in terms of possibly numbers and process/support.
6. He was interested in understanding what choice involved in terms of the drug, process and whether it was a drug used for other treatments. I think I added a bit to his knowledge base there.

There was a lot more to the conversation and I feel that though the Prime Minister will never be an advocate for the Di Natalie bill he will not stand in the way of democratic processes to let it run its course. The big learning here Australia is we all as individuals need to get this issue onto every parliamentarians slate for it to be on the Prime Ministers. Fair enough I say.

My job on this is still far from done but wow what a euphoric wheel to have turned. I close by saying I am invigourated by the Prime Ministers response, I found him with a great sense of humour, candour and even charisma that I have not seen on television. I am pleased having the Liberal free to vote position on this up front and centre. He felt this was always clear but somewhere I missed that as I think have most of the population, so great it is cleared up. Maybe it will be another brick in the wall of this legislative change as it should encourage discussion at many and varied tables.

From here I can ease off the politics a bit at the Federal level and work on telling the story and the need for legislative change at a national level. I do think there is also a role to be played by me in the Dying with Dignity debate in Victoria, and goal of referral of the medical treatment act to the Victorian law reform commission. There is now a considerable shift of players in Victorian upper and lower houses. Some such a Fiona Patten and the Greens together with some other influential people in the major parties have this on their agenda. Effecting change here would simply compliment the desired goal of national legislative change under the Di Natale plan.

Thanks Prime Minister Tony Abbott for making a real difference to me in my fading days, I hope you got a bit out of it as well. Peter

Day 29/90: Had to knock back a Dick Smith helicopter flight and coffin arrived!

Was all set to shoot up to Sydney to meet Dick Smith tomorrow but unfortunately I don’t have enough confidence in my breathing and the leg clotting still has not fully dissolved. As a result I unfortunately had to forgo the opportunity, just shows never look to far into the future. I hope Dick understands and am sure he will.

Had a great filming session with a 90 year old lady I have become very fond of. She has led an amazing life and her views today to be included in my docko will be interesting, and probably a little controversial. It is astounding what can be packed into 90 years of life.

Funeral director rang today to tell me my custom coffin has arrived. How exciting. I am going to go check it out and we will see but I feel a compelling need to give it a test lie, weird but I am drawn. Will see when I go if it remains a good idea. I really love what my old marketing team and Coles designed up for me, it was a big ask but they did a great job.

Finally snuck into Coles for a coffee with my old boss today. I must admit I still miss the place, but they are doing great without me:) The big change is the 5 story car park built at the rear, great for the team as parking was a bit off a problem.

Pain 0/10 Mental Health 10/10 Physical Health 7.5/10 Life Enjoyment 10/10

Day 28/90: My Lungs are officially having a White Christmas & reflection for all

I went to the oncologist today and we had a quick catch up. The chest X-ray from the other day shows all the poor little lymphs in my lungs” full of cancer” his words not my dramatics, looks pretty Christmassy in a bizarre way. Had the usual great chat and there is life still there in those lungs for a while.

This introduces my reflection topic. I am aware that my approach to my death, some of the comments I may make, and the interactions I am having are seen by some as a little unusual. What I hope is that we reflect on my motives which are all grounded I think in common sense. At the end of the day it is as simple as I want a magnificent end for myself and my family in their participation in that inevitability. I want Elizabeth’s and Mitchell’s future to be the best it can be as quickly after I die as possible. Maybe we are pioneering a bit and I hope others test their views against what we are doing rather than judge am I doing death in the right way. For me  and my family I am. I also have become caught up in social and legal change in a far bigger way than I ever expected. Again this is now very personal and important. I don’t want to have such important opportunities, giving me such comfort, simply because I found a way to go through a special door. This door has to be one all Australians in circumstances of terminal illness and/or intolerable suffering have the keys to. May sound glib but it is now a marrow depth conviction.

Finally life should be about fun and a reason till the very very end. When all the benchmarks one measures normal life by changes then surely the rules are all up for challenge, reinvention and rewriting if appropriate.

Point of this is to touch a few nerves and hopefully move all of us on even further down this unusual shared story. If it was a rabbit burrow there would not be enough room for Alice, unless she was a Prime Minister!

Pain 0/10 Mental Health 10/10 Physical Health 7.5/10 Life Enjoyment 10/10

Day 27/90: Fat leg, Doco office, broken car & Chest X-ray

Here is a shot re size difference, getting better now on blood thinners.

A big thank you to Gail and Craig who answered our office space call out for the documentary. Fantastic fully furnished and equiped office in Carlton which is way beyond anything expected. Fiim crew moved in today! Peter Short Film Documentary PTY LTD is looking way too professional. Donations always welcome, via the details on the donate and documentary tab above.

On the weekend we had a special time with our best friends and some of the younger generation at Oakdene winery in Wallington. It is an amazing place for lunch. One friend read a poem, better than when I can’t hear it was the idea, a good one both poem and idea. Elizabeth and I were staying down at Queensciff overnight and Mitch was driving home, see pic

His car does not have a spare and this tyre shredded, Car now at Ocean Grove RACV waiting for new tyre, pick up Wednesday. Lesson, run flats not good if tyre shreds but saves the rim. It did mean he stayed sat night with us and our friends so it was really a lot of fun.

Went for a Chest X-ray this arvo. Xray lady was great and let me have a look. Lots of fluid in the right lung which is also quite compromised due to the surgery a few years ago. Anyway will see my oncologist tomorrow. Will check the leg getting skinnier is as expected and have a chat about when/if  we do a bit of lung draining, they say no big drama but can’t be fun.

My cousin Michael Short today did his last paper based The Zone in Melbourne Age today. They are taking it digital, very exciting. Have a read of the last paper one and thanks Michael for the inclusion of my striving to change the law around Choice at end of life for terminally Ill and Intolerably suffering people in this last one. Without Michael and Fairfax I doubt I could have ever got this campaign for Choice and Dying with Dignity off the ground.

http://www.theage.com.au/national/the-zone-the-quest-for-opportunity-20141214-125ov2.html

Finally I had a great early arvo with Mitch who helped me go round Chadstone, Melbournes largest shopping centre doing my Christmas shopping. We learnt a few  things, I am decisive, I don’t cue and money is fun to spend when you soon won’t need it. I think this is going to be a good Chrissy. PS We have already started eating our XMAS cake Elizabeth made just in case.

PM Tony Abbott seems to be hunkering down to wait me out, but that is not going to work, have a few ideas left, help from others welcome.

Pain 0/10 Mental Health 10/10 Physical Health 7/10 Life Enjoyment 11/10

Day 24/90: Off to Emergency at 8pm last night, game on! Dignity ring for Xmas

I said to Elizabeth last night my legs are tired and really are wasting. We then did a few stretches and crunches and i headed off to bed. I tore off my pants and amazingly my right leg was 40+ pct bigger than my left leg. Those 2 legs usually never change size like that! We rang palliative care and they set us up to go to what I consider my second home, Cabrini Emergency. I just love everyone in that Hospital! A short wait after triage and then into a bed in emergency ward, blood test and decision to go off to get a Doppler ultrasound. Nurses were great as was the Doc. I found it eerie rolling through the back bits of the hospital all cloaked in night light and down through the bowels where a lot of Rays and Nuclear and CT and Doppler stuff happen. I was in a lot of those rooms 6 years ago in very yucky scenarios so it was a bit like visiting ghosts. Anyway the great on call Doppler Doctor looked after me and it turns out I have clots in my groin and lower guts, therefore blocking the flow out of my leg like a dam in a river was the quote. Rolled back up to emergency and then chat with the Doc re options. Started with a shot of Clexane, and prescription for pills or thinners as they get called.This is an advance from 6 years ago where I had to self inject 2 times a day for 6 month, now just pills, fantastic. I need to take them for 3 months, I find a smile in that and promised the doc I would do my best to take the last pill and I will. Then due to the severity of clotting we discussed maybe a 2 day stay in hospital to keep me still and rested.

My oncologist, now my escape artist was rung and he knows my wishes so I was told to go home, take the pills and rest for a few days till the clots dissolve. We all agreed an embolism at home or at hospital whats the difference its never going to be fun. We got out of there like a Bat out of Hell (my favourite song even more so now)  and boy did I enjoy sharing a midnight drumstick with Missy my cocker on my bed. These are just magic ups and downs. The ups have more magic. Hopefully from here I can stay on my track which is simply eating and breathing issues. When we got home Mitch who was waiting anxiously and I had a hug and laughed about we had both thought we rushed out so fast there was no goodbye, a lesson for the future just in case. He had at least thought about it but was concerned if he has I would have freaked, considerate hey, but why talking is essential.   I also throw in a pic with Mr Kennett I left off the other day.

Well thats it for a dramatic night and relaxing day. PM Abbott had better hurry up as his odds of outlasting me are getting better daily.

I lastly and belatedly also remind you of the Dignity Ring which you can buy via the tab at the top of the blog. Great xmas present and way to further the cause

http://petershort.com.au/dignity-ring/

Pain 0/10 Mental Health 10/10 Physical Health 7/10 (clots are worth a -1) Life Enjoyment 9.8/10

Day 23/90: Apology to PM, still need a meeting! People, emotions and things boys hide

On Day19/90 I put up spoof press releases on Dying with Dignity. Reflection, discussion and with peers led me to conclude this was inappropriate. I stress no-one has contacted me re the matter. I think taking them down was just the proper thing to do. My campaign is too important to take a misstep in terms of integrity and this was one. ( a lesson from Joan Kirner for me)

With that said Mr PM, I am starting to feel I am playing a waiting game, i.e. you are just waiting me out. Unfortunately you can, as I will inevitably die in the next few months and be out of your way. Please don’t let it end that way for either of us. We will have a positive experience, promise.

Had an amazing interview with Joan Kirner yesterday ex Vic Premier. Wow has she done some things and got some great ideas. Meeting with both Kennett and Kirner has inspired me in a few ways and given me a different lens. I can see now a little bit why and how politicians are different from corporates. Both of them had incredibly disciplined models in their heads around how to attack things.

Office Space. The doco film crew is now a team of 5. The problem we have is they need a small office space in the Melbourne south eastern suburbs or not to much further away. It would be to do team meets, lap tops, edit equ etc. One medium room a few desks and  chairs, power would be fantastic. Need it for say 3 to 4 months max. If anyone can help out as a donate it would be hugely appreciated, we can’t afford on the budget to rent one. Let me know on pgs-28@hotmail.com.au We would give you a credit in the tele movie as I now call it. It is far more than an everyday Australian Doco.

Have also had a bit of catching up with old Coles friends this week, including tomorrow another. They are tremendous conversations and it is so exciting to still be able to have a view on where things are heading, and how exciting the outlook is, not an official view: mine 🙂

I had my first emotional wobble last night. Big sister came over and got into are you feeling death getting closer and are you going to miss things like grandchildren. I tried to think hard on it and did my first tear up, not a flood however. Interesting thing is the way I am doing things is to be excited and aggressive around short term goals, like some key dates for me in the short term, commitments, birthdays and Mitch starting work. These I think/ hope I can make it and they are realistic targets. Just like business if the target is not real no point chasing it. To think about what is out there you will miss is just pointless, so I don’t. Still another clarifying learning for me and interesting. A bit of cheek water was probably due and it made cuddling Elizabeth then the dog all that much sweeter.

Pain 0/10 Mental Health 10/10 Physical Health 8/10 Life Enjoyment 10/10