It's getting harder for me to stay comfortable at home. I want to stay at home as long as it is practical for me to do so, but that time is limited.
My meds have been upped as much as my team will allow from home, and I'm using oxygen a lot now too.
I have my stick and my chair but I don't go out anymore. I don't get dressed. I get out of bed and get onto my super comfy sofa and stay there until bedtime.
I have my wonderful husband here to look after me, which he does to the highest degree. I have lovely view out of the window, I hear birds singing and when the weather is right we open the doors and I feel the breeze.
It's become hard for me to have visitors, physically and emotionally, so I've cut down on that (but not stopped it entirely - I do still want visitors, it's just harder now).
Every day is a little bit scary, because I'm a little bit scared of going into hospital and what that means for me. And every day now I wonder if today will be that day.
I mentioned in a previous blog how I've done so many things for the last time already. Well, the list keeps growing at an alarming rate, there are so many things to be taken away. Have I gone outside for the last time? Will I ever stand up while brushing my teeth again. I'm sure I'll never wash unassisted again.
It almost sounds boring but it's not. I'm desperate for more time. There is so much more I want to do. Big things and small things. And I know that the chances are they won't get done. And I also know it doesn't really matter in the grand scheme of things. I'm blogging today because I'm scared. Scared that this might be my last chance.
One of the other things I'm never going to complete to my satisfaction is to say Thank You enough to everyone who's touched me over the last 18 months. No, over my lifetime. I've been so incredibly privileged to know some of the most amazing people that could possibly exist, and to be treated like a friend by those people is an honor I can hardly fathom. It's truly made my life a joy. I'm still devastated I don't have more time with you all, but for the time I have had I am truly grateful. Thank you.
Here is a part of copy and paste from a blog I prepared a while ago, I didn't publish it as it seems so self indulgent, but part of it is inspired by my ever-consciousness that people don't know what to do or say at these times. I don't intend to have a funeral service, and Dave and I do not want flowers or gifts, so knowing this stuff below may be helpful in its stead. It was written when I had much more energy so it might sound a little 'energetic'. But I was, once. I'd also like to add that while Dave is one of the most independent and practical people I know, he will be going through a very tough time and will surely appreciate your love and support going forwards.
OK, here is this thing I wrote a little while ago, ways you can honor my memory really.
- Dave and I are super practical and have most bases here covered, and we value practical gestures greatly. My income and Dave's have plummeted as a result of my diagnosis, and at the same time we have many new cancer related costs to incur. There are a couple of different ways you can do a little something financially for me.
- Support our fundraising page. We've made it predominately about our surrogacy costs. Cancer was not a choice. Having children is. Thanks to cancer to stick to that choice has become ridiculously expensive (which having kids already is!). If you don't wish to support our surrogacy but do wish to support our cancer treatment costs, you can still use the fundraiser - and just let us know it's specifically for cancer treatment - we'll have no trouble honoring that!
- Donate some money to a charity (See below for more details).
Look After Yourself
- Your body is your most valuable possession. Actually, it is your only true possession. And it has to last you a lifetime. And it's an absolutely wonderful thing. And so many of us spend too much time complaining about this incredible thing we have and feeling dissatisfied. Be grateful. And look after your body like it's the most important thing you own.
- Next time you feel dissatisfied with your body, count how many working eyes, ears, legs and arms and organs you have.
- Embrace getting old. We all seem to have a terrible relationship with death. Which is crazy because it's guaranteed to all of us. So many of us bitterly resent getting old when it is a privilege denied to many. Getting old is a beautiful achievement. Embrace it, admire it and be grateful for it.
- Remember I love you. Your friends and family love you. Give this wonderful fact the respect it deserves, don't just dismiss it, and it will give your mind and self esteem a boost.
- Listen to your favorite music. Nice and loud. Frequently.
- Go for a walk, leave the car at home. Walking has had a fantastic impact on my life so I hope it can for you too.
- Here is a magic trick. You don't have to do something for me to do something for me. Every time you do a good deed it is a gift to me.
- Pay it forwards
- Give people the benefit of the doubt
- Be kind to yourself
- Donate to a charity
Support a Charity
- If you want to support a charity that directly affects me, I prefer ones that fund cancer RESEARCH. Some cancer charities only fund SUPPORT actions, and while this is important, research for a cure is the thing that saves lives (which will help Support Organisations too, indirectly). My two favorites are the GI Cancer Institute and Bowel Cancer Australia.
- But any charity is good. I have others close to my close to my heart and there so many important causes out there. Non cancer causes I love include Cystic Fibrosis and environmental protection.
- Give Blood if you can. I've never given blood my entire life and I regret it. At first I was to scared, and by the time I'd plucked up the courage I was no longer eligible.
- Many of you know that am I passionate about protecting the environment and indeed all occupants of our beautiful planet, including ourselves. Any or every environmentally sustainable act you do warms my heart.
- Say no to disposable plastic. If just once this year you remember your reusable shopping bags or say no to the plastic lid on your coffee or the straw in your drink that will make my day.
- Compost! It's a fantastic way to reduce your impact on landfill while getting in touch with nature.
- Buy sustainably. If you must buy new, make sure you are buying has not been made in a sweatshop.
- Ask me! I have heaps of tips and tricks on how to make any corner of your life more environmentally sound. I'll stop writing now, I could do pages and pages.
- I'm super sensible. Its boring but I can strongly recommend doing the following BEFORE you need to. Once you need to it is either much harder or entirely too late.
- Write your will.
- Consolidate your super.
- Make sure you have GOOD income protection and life insurance.
- Plan your funeral.
- Trust me, you'll feel good when these things are sorted.
Shout about it
- Send me a message if you do something good. Or better yet post it on Facebook! Some people think it's not cool to share good deeds like that in case it somehow devalues the act, but I think its inspirational!
I know I can trust you all to follow my wishes to various degrees that suit you, but I'll also encourage you not to wait. My beliefs mean I don't think I'll get to actually see what you get up to after I'm gone. So if you have something to say to me, or something to ask me, now is your chance. Just be patient with me as I am slower than I was and busy with messages.
Love to you all.