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Last post from Jo

Dr Joanna Elizabeth Griffith

What’s up?

Well things have progressed and I fear this will be my last post. Since the brain radiation I’ve been really unwell and in the last few weeks increasingly unwell. I keep rallying but it only lasts a few hours and the nausea, diarrhoea and fatigue return. The cancer is everywhere now and we are out of options.

So here we are having “serious conversations” with the palliative care team and they are talking about days now.

So, here we go.

Thank you for all the your support of me and my family. Honestly you’ve been immensely supportive. It has made the process much more bearable. Of course I really would rather not have to have done this, but I guess we all have to at some stage.

What can I do?

With Christmas and Lachy’s birthday we have a lot of stuff. We have been very generously gifted a lot of stuff and inevitably fairly soon we will be down sizing stuff soon (well not me!). So please don’t send stuff, we don’t have much room here. Vouchers, food and so on is just not as practical and I’m not eating much. Nice experiences require organising and I doubt you realise how unwell I actually am now.

But… you can send money. Sorry to be so mercenery. I know many many of you have sent money and I truly only want you to send money if you can afford to.

For example $5 buys Simon a coffee, $18 buys an hour of baby sitting (going to be crucial when Simon returns to work as he will have a gap between after school care and getting home, vets work long hours), $30 buys an hour of cleaning and Simon is tired. We will need money for a funeral too and counselling for the boys and Simon. Simon hasn’t been working much for a number of months now.

Now, Simon is MORTIFIED that I am asking for money yet again. Simon is terrible at asking for help. He’s terribly embarrassed by me asking, and wants you all to know we are not on the bones of our bums here, but I’m planning, and people seem to want to do things.

So, to some extent you will need to gently force the issue with regard to help and childcare and food. Some meals would be helpful but please check freezer space with Simon first. He is likely to say no. but maybe press him.

You can definitely share this post. You’d be suprised how it helps.

And you can pray.

If you are not comfortable sending money because you’ve already helped out so much or cannot manage any more I absolutely understand and, well, no judgement here, I will be gone. If you’d prefer, then the charities I favour are (no particular order).

Vet and koala charities

  • Southern Koala Rescue (mish)
  • Adelaide Koala and Wildlife Centre (Tamsyn)
  • KoalaRescue (Merridy)
  • Koala Health Hub Uni of Sydey (Damien)
  • Koala Conservation Australia (Cheyne)
  • Healesville Sanctuary
  • Australia Zoo
  • Wildlife Disease Association Australasian Section
  • MANZVS Pharmacology Chapter
  • AVA Benevolent fund

Human rights

  • Amnesty International
  • medicins san frontiers
  • Red Cross

General conservation charities

  • Bush heritage Australia- and similar charities that fence off areas for bush regeneration
  • Australian conservation foundation

Education

  • Queens College
  • University High School

Other things

Sending cards and messages you can do, but please be aware I may not read them. They do make me sad.

Last words

Just be kind. Kind to my boys, other people, animals, each other, the planet. We desperately need it.

XXX

 

The form is not published.

 

 

Keep an eye out for thank you emails

Hey folks. If you have recently donated (or even donated in the past but not received a thank you), please keep an eye eye on your email, and check your spam or junk email. Emails usually come from fundraiser.net.au with a subject link like “a personal message from Jo to you” . I’ve had to … Read more

Update December 2021

Well, as you may know things have progressed with my cancer. Now there are more lesions in my lungs, brain and now my liver. This means past treatments, including the Keytruda, have stopped as they are no longer working. I have started to feel a bit unwell with things now, so it’s getting a bit … Read more

Thank-you notes

Dear friends, I have finally finished my thank-you emails. They have taken me over a year to write.  I have tried, where possible, to add a personal touch to each one, and it has been very emotional writing them. Apologies that it has taken so long, there have been more than 777! You should be … Read more

July update

Well we’d always like an update to be positive, but that is something I can’t do today. I had a scan last Friday, and unfortunately it shows disease progression. There are two new metastases in my brain (fortunately not in very important bits!) and multiple small nodules in my lungs. One nodule in my lung … Read more

February update

Philosophy You know its funny this preparing to die thing. It feels a lot like normal life. Each day is much like it was in the past. There are some very notable differences. I work less. I spend more time clearing up and clearing out my life – decluttering and simplifying things as much as … Read more

Update for December 2020

Jo's cancer treatment

Well its a long time between blog posts.

Cancer update:

Jo during chemotherapy
Jo during chemotherapy
Thumbs up
Jo Ben and Lachy thumbs up

The chemotherapy protocol I was on initially – eribulin + Keytruda (this is the really expensive immunotherapy one we/you are funding), did not work. I could feel my lymph nodes enlarging, and just prior to finishing prescribed course of treatment (8 x 3 week rounds from memory), my oncologist bit the bullet and ordered some scans. These showed all tumours had enlarged. Now, it was just possible this was pseudoprogression, which is where the cancer appears to get worse on the immunotherapy, but then improves, but my oncologist didn’t think this was the case.

So after  he had a case conference with colleagues, I’ve been switched over to carboplatin (which I’ve had before), gemcitabine and Keytruda. And whoop whoop, it seems to be working. My lymph nodes have all gone down. I also had an MRI scan last week which showed there was no sign of the tumour which had been burned out by radiation therapy – where I had to have a really scarey purpose made Hannibal Lecter mask clamped down on my face so I couldn’t move whilst the radiation burnt the tumour in my brain over about five minutes. not a fun thing. Anyway, no sign of tumour, and no new tumours in my brain. So this is really the best news possible. We can hope this is buying me time. Don’t get too excited yet though, its not a cure. If I’m still blogging in a few years we will call that one.

I have been well on the chemotherapy so far, with only one day of bad nausea, and one cold. My hair is slowly growing back. It remains thin, but I can go hatless now, with a very short do.

Other things:

My sister

Dinosaur toys on a table surrounded by flour
Dinovember provided a fun and messy distraction all through November.

My sister made it over from New Zealand, funded by a kind donation from my cousins. She managed to miss the two week isolation requirement entering in Australia, although she did have to spend some time in NSW whilst SA made up its mind to let her in. Ironic, as there was more Covid-19 in NSW at the time than in NZ. She did manage to catch up with relatives whilst there, and see some places special to the family and my now deceased grandparents. So it was time well spent.

 

Jackie and Lachy eating icecream
Jackie and Lachy eating ice cream

It was great spending time with Jackie. She helped me very much with dealing with some of my deceased father’s papers, which I’ve had trouble clearing out. She also took many of my old formal dresses back with her from my niece. I feel I am massively Marie Kondo-ing my life, to try to make things easier for Simon when I’m gone. Death cleaning is another term for it. It is nice to start to see areas become less cluttered, simpler and easier on the eye.

I also got to revisit many memories with my sister whilst she was here, as we trawled through old school reports, slides, and recordings.

With a Covid19 outbreak occurring suddenly in Adelaide, Jackie had to scurry for the border to prevent her being locked down in Adelaide, missing her quarantine slot in NZ, and potentially getting stuck here until at least January. This meant she took our car and hightailed out of here all of a sudden. Fortunately it has all worked out, and we have a friend bringing out car back from Melbourne next week, and a friend in Adelaide has lent us her car. Jackie is stuck in quarantine in New Zealand, but hopefully will be out soon. Truly times in a pandemic are very strange. And it is hard to plan for anything with cancer, let alone adding in the changes occurring with a pandemic.

Work

Other than that I have continued to work two days a week from home. Continuing to work does give me some continuity and meaning as well as helping the cash flow situation.

I have had a scientific paper accepted for publication on koalas. This has been hanging over me for some time, but has finally been pushed through. So that is a wonderful achievement.

Fun things

We’ve been down to Encounter Bay a few times, had an amazing meal with great friends at Penfolds, and Simon and I have been doing lots of walking. There have been neighbourhood parties cherry picking and for Halloween. I’ve been blessed to spend time with wonderful friends who feed me, provide me with coffee, chat to me on Zoom, or during watch parties and help me with my decluttering.

Jo and Simon walking
Jo and Simon hiking on our days off

Future plans

Well it is very hard to plan more than a week or two ahead. This week we have been laid low as Ben has had chicken pox. This is complicated, as I need to have an antibody titre done to see if I am immune. If not, I need an infusion to try to prevent me catching it. Unfortunately the chicken pox has meant a dear friend and family have had to cancel plans to visit this weekend, just as the borders have come down from Victoria.

So life continues. Much as it did before. And yet nothing like it did prior to my diagnosis. A great help is my Facebook support group which keeps me cheery, with an endless stream of jokes, pictures and memes on my chemotherapy days.

Jackie, Jo, Ben and Lachlan
Jackie, Jo, Ben and Lachlan just prior to Jackie fleeing for the SA-Vic border as lock down descends.

I will update you all soon.

 

Three rounds of chemotherapy down… more to go.

Jo Lauchie Ben Smiling family day

This week marked the end of my third round of chemotherapy, and also my third dose of Keytruda (“pembro “).

There isn’t a great deal to report medically. I am tracking ok. Few side effects, no nasty autoimmune effects from the Keytruda – taking the brakes off my immune system can lead to my immune system attacking just about anywhere.

August update on cancer Treatment

The first time I had chemotherapy, I cried. I had to sign a consent form that I understood just what was going to happen to me. Of course, I couldn’t read it. Most of that day was a blur, and my eyes were tightly closed. But the finality of consenting to literally poison being pumped … Read more