Good morning Kate and everyone,
Thank you for the the tag Kate- you are lovely! I hope everyone is going ok? Times have certainly gotten weirder hey... Annoyingly I am in a lockdown suburb so things have gotten complicated, but we had already gone on a trip to our family beach house by the time it was announced; just means we will stay here longer which cannot be a bad thing!
We got through the home learning thing with the kids reasonably unscathed, but what an experience- would love to hear how anyone else coped!
Unfortunately my situation has changed pretty dramatically, the immunotherapy I had eliminated the lung tumours, but it has now developed into leptomeningeal disease and I now find myself in a whole new world, involving quitting work, ticking off bucket list things, writing letters and wills and advance care directives and telling friends and family that things are very grim. I have an incredible oncologist who has put me in a new regimen to try including whole brain radiotherapy, and while I am casting a shadow I will be throwing everything I possibly can at this. Gloves are off.
Sending love and thoughts to everyone, keep well and keep strong!
How devastating. I am so very sorry. I hope you make some lovely memories with your family.
Looking on the bright side of death - I've had a great sense of relief in preparing my funeral arrangements. Relief, because I know that when I do finally kick the bucket, everything is ready to go & hubby doesn't have to plan/organise things when he's in no fit shape to do so. I've had a bit of fun in preparing my own coffin. As I love ancient Egyptian art work, hubby made a new coffin lid (for a cheap coffin we purchased through a funeral co.); we covered it with wallpaper you can paint on & I painted my sarcophagus. I have a pic of it on my home page I'd you'd like to see it. It even has a mask of my face which we had fun making. I found the whole thing quite therapeutic, & while I know making your own coffin isn't everyone's idea of something nice to do, it gave me a sense of control over something I cannot control. For that, I am very grateful to my hubby for suggesting it.
I wish there was a magical cure for cancer; just snap your fingers &, voila, all cancer gone.
Sending you my best wishes
I am so sorry to hear your news is worsening and so dramaticly. Your are a very strong person indeed. My love and thoughts for you all. Stay strong. I really can't imagine what you are going through right now.
Wow how amazing that must have felt for you doing this with your own coffin and such a wonderful idea of your husband. My husband has made his will and all of that business. His three children will be taking care of all the funeral stuff he says in a lovinly way it gives them all a job to do. He has them all doing different jobs.
You are an amazingly strong person Budjie.
I love your sense of humour in regards to preparing your own coffin,death comes to us all only some sooner than later ,I can understand the sense of control it gave you,we are fortunate on this cancer forum that even though people are seriously ill they still take the time to offer a shoulder to lean on,or dispense some pearls of quality wisdom,you are one of those whose writing is full of compassion for others, a good human being and also a strong person,sending sounds like your hubby is an interesting person 👍best wishes to you also.
@kj - Good to hear, hope you don't have to go into lockdown!!
@Budgie - Yay, fingers crossed the surgery goes ahead! I hate contact lenses, so can well imagine how annoying they are for you. Oh gosh, sorry to hear about your hubby!! Hopefully the next round of surgery helps ☹️ Congratulations on 35 years together, what a milestone!! 🎉
My family are all good, kids are back at school which makes life easier. I am surprised my hubby and I have survived, but we're pretty well used it 🤣 We had a few teething issues with the younger one settling back into Kindergarten, but she's all good now and got 2 awards in recent weeks and a decent school report. Next up: school holidays 😂
@Sarah11 - Times are certainly strange for everyone, hope you're enjoying your time by the beach, beats lockdown at least!
Home schooling? What a fun time that was, not. I actually am a qualified teacher, so got to flex my very dormant skills, I have one in Year 3 and one that is in Kindergarten. For me, the key was to be super organised, going through everything the night before and being aware of what they needed to be doing and how. The biggest one was having separate study areas for the kids. We set the 8yo up with his stuff in another room, and had the 5yo on the dining table near me as she required more supervision. The school was awesome and put together short videos of like their morning songs, now it's time for fruit break, recess, lunch etc, which helped immensely to keep them in some kind of routine.
So very sorry Sarah, to hear that things have advanced. I am very glad to hear you've got an awesome oncologist, and please don't hesitate to contact Cancer Council on 13 11 20 whenever you need it, or post here. We are here to help 💕
@Budgie - you are just amazing ❤️
@Angel1 - Lots of hugs and love to you as well 😘
Oh wow Budgie,
That sounds amazing and so creative! It is beyond black humour really when you start thinking about coffins and things- I have already started writing my own eulogy!! Sorry if that sounds confrontation Ng to others... But I want to have a final say! The Egyptian art sounds gorgeous though and you are so right, practicality and planning in this situation is a privilege I am really grateful for. I’d love to see a picture!!
And yeah, a magic cure would be gratefully received at this point in time. Massive hug to you and hope you’re going ok.
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