On Tuesday morning Steve died peacefully at home in his bed. We send our love to Jo and his family. Steve was a wonderful man and he will be dearly missed.
Thanks to all of you for your love and help. I know it made a difference to him.
So sad to hear he's gone so soon. He will be missed by many people.
Grateful it was peaceful, and at home.
Thank you for the update, Gavin.
As this page sets Jo & I would very much like to take this opportunity to thank you all for your kindness and generosity at what is a most difficult time.
As has been obvious from the donations, comments and private notes we have received, people care for one another, and for this i am both grateful and humbled. I can now move into my final days remaining me, knowing that Jo will be supported by a loving community of friends.
What more can one truly ask?
Steve.
I truly hope that you were able to get to the Orokunui Bird Sanctuary. I thoroughly enjoyed my visit on our last trip to see you. Sad to see that it will not be much longer. See you on the other side. Shaun
Yes, managed to tick that one iff. Tomorrow, The Pyramids beckon. We have scored a key to enable close access in spite of my decrepitude. People are so generous
As my time draws ever closer, various lists are getting built and slowly ticked of. Some are simply administration stuff, like making sure keys are correctly identified with locks, others have a huge emotional investment associated with them, like yesterday a huge item, where I finalized the disposition of the last of my motorcycles. At least the lists are becoming more manageable, but one ex-taxi remains unsold, and the house does still require sorted into the short to intermediate term for Jo/Mouse.
On the good side of the ticks ledger, hooefully today I will finally get to Orokunui Sanctuary. Best laid plans, and all that. Hopefully they can provide a wheelchair accessible visit with a chair for me.
I certainly hope you have a great visit to Orokunui. I used to live in Waitati and was very pleased to see the sanctuary being developed. Massive hugs, mate!
I was released from the hospital yesterday and am now at home, available for visitors with notice.
And it's great so far! I had my best night's sleep in weeks, comfortably in my own bed tucked up warm against the overnight frost with my darling wife. Woke up without discomfort too, which is a bonus. The 24hr drug pump cocktail is hitting the mark.
While I may well end up in an at home hospital bed, that point is not now. It's there for when I do.
Thank you friends for following us on my journey. Mouse/Jo and I have felt your love and concern as you've wrapped your arms around us.
Well, today should have been a chemo day, but they have stopped treatment and all that remains now is setting and tweaking pain management and waiting for the day.
I've not said much over the last wee while, but it's been a pretty rough week since the last chemotherapy round. Thursday and Friday weren't great and by Saturday afternoon it was clear something major was amiss. I had a fever, and on Oncology Hotline advice went into the ED at Dunedin Hospital via ambulance.
They confirmed the fever and started specialist antibiotics and IV pretty much anything else, to get the fever down. Still in the hospital now, maybe able to get back home by the weekend once they can get support systems set up. A CT scan shows chemotherapy has not reduced the tumour, there's some spread and also necrotic tissue.
We've been told 8 weeks max, likely less, based mainly on my inability to swallow, hence almost zero nutrition. I now fit size S pants. Also the fever is linked to stuff getting into my lungs from my mouth, as the normal mechanism to stop this doesn't work any more, so it will likely happen again. I've activated non-resuss policy.
We're getting family and friend support here, and I am resigned to what is to come. I've been planning my service and while I still have time I'll be trying to tie up loose ends, with help.
Thinking of you, your family and friends.
One of my taxis has finally been sold,at a loss but at least it is now off the books and gone. You can't even begin to imagine the relief that brought us, as it takes a big chunk of the uncertainty out of my time remaining. Also, have now had four rounds of chemotherapy, predictably each that much harder than the one before. Still too many loose ends and not enough time remaining.
On a more positive note, planning for my funeral is well in hand and I am hoping people will enjoy a few wee special things that have magically become possible.
Good you've been able to reduce some uncertainty, one big thing less to be concerned about.
But such a sense dark of humour! "On a more positive note, planning for my funeral is well in hand ..."!
A quick update from the day unit at Dunedin Hospital. The first of the two drug cocktail is pumping away into my arm, with the second to follow soon. So far, so good!
Monday I prepaid for my funeral and plot in the spectacular Andersons Bay cemetery so funds received from all you lovely donors are certainly helping. I managed to secure a great spot and the people at Exit Funeral Services, while the cheapest in town, have been great to deal with.
No progress on selling the taxis so we're still well behind the eight ball financially. Hopefully I can get that done, but until it is, dealing with WINZ will be pretty fraught.
Thanks for the update, good to hear how things are going
An update on progress.
Another step closer to treatment. Thursday the oncology team will run me thru pretreatment drug regime and give me treatment start date.
Today is my last official day of being a taxi driver, although I have not been able to work at all for the last week so it's a bit academic really.
Unfortunately still no progress on disposition of the two taxis, so WINZ are still not an option for any support. Your generosity is what is keeping our heads above water, so again, thank you all so much!
https://www.odt.co.nz/news/dunedin/sdhb-outsource-treatment
Steve Carr, a throat cancer patient whose misdiagnosis and delayed treatment contributed to his cancer becoming terminal, spoke out about delays and waiting lists a week ago.
Yesterday, he said while the planned extra treatments would probably be of no help to him, he was pleased other people would be helped.
Set for today week, this will be the first chance I get to hear what, if any, treatment options exist to potentially extend my time remaining.
And wouldn't you know it, 15 minutes later another department, Head & Neck Clinic, called me and asked if I wouldn't mind skipping an appointment with them due in an hour from when they called!
I hope you told them you did mind!
The Otago Daily Times approached me asking if they could put my story out as part of continuing coverage they have been running on cancer wait lists in Otago/Southland. The result appears in this article:-
https://www.odt.co.nz/news/dunedin/treatment-%E2%80%98absolute-disaster%E2%80%99
There has been no progress with getting access to palliative oncology with SDHB. They have not been in touch directly with me but through back channels it appears I have another five weeks before I can get an appointment.
Selling my two cars is also not going anywhere fast. No prospect and they are a potential $35K loss for winding up the business. I've not been able to work due to medication changes and lack of energy so we're getting further behind the eight ball.
I've got a last day for Dunedin Taxis of May 25. From that point income goes to zero and the process of liquidating the business goes into full swing.
Wish us luck!
The Dunedin Hospice service has been in touch and we're to meet with them Friday.
No progress on the palliative care seven weeks wait list to even talk about possible life extending treatment sucks but it is what it is.
Biggest problem is having to keep working and trying to sell up the taxis and shut it down. Slow progress but no certainty
