Wishing and hoping

This week and next are big weeks. Tuesday I go in for what I hope will be my last chemo for a while. The following week, I have a scan to see if this can be so. There is a bit at stake with this scan, well all of them really, but this one comes with the added “I’ll have a complete freaking nervous breakdown if I don’t have a chemo break” kicker.

If the liver looks better (it scares me that I think it will, my liver function tests have improved every single time since I had SIRT, until last time they were NORMAL), smaller tumours etc, lower cancer blood markers (these had dropped massively last time they were checked about 6 weeks ago…down HUNDREDS), then I will proceed to the much anticipated lung radiation. Considering how effective it could be, there will be little trauma involved, a work up, some metal thingies placed around the tumours so that the radiation can’t go outside the tumour field when I breathe (something like that), and then five straight days to The Alfred for a very short time to get the actual radiation done. The DR said to me that this will be probably the least traumatic thing I have done so far, with very few side effects. In stage 4 cancer world, you don’t hear that much, I can tell you! It can of course, go another way. If I have one single other tumour, the radiation is off the table. If my cancer markers have risen at all, the radiation is off the table. I usually go into these things in major self preservation mode, sure that it will all turn to shit, so it does scare me that this time I feel so much better that I am pretty sure they won’t. Don’t let this be the time my instincts totally fail me, as I am not in the least bit prepared for this.

Onto other things I have been overthinking (I’d given the otherthinking shit up for a time, but it’s well installed again at the moment) is whether this blog is a negative and difficult place for some people to visit. I speak of course of my fellow bowel and other cancer sufferers, who things don’t go for the way they are currently going for me. I have always been so pleased that this can be a place of hope for others who start out very poorly at diagnosis. I can be a realistic example of what can happen, I was COMPLETELY written off at diagnosis, my maximum two years was up in December, and I am going pretty strong for someone in my position, I really am. I still sleep through a day or two a fortnight, and I have collatoral damage issues (only having a very small amount of bowel left does come with it’s discomfort, as you can imagine), and attacks of quite violent liver pain, but I just have to work through it, and it goes. The actual cancer (despite the liver pain I guess), doesn’t cause me any issues at the moment. I know everyone is realistic enough to know that I have stage 4, currently incurable cancer, and once these measures stop working, and I run out of chemo options, the outcome won’t be a happy one, unless there is some really awesome immunotherapy trial that I can get on (and this is what I am very much hoping for). I know that when I was diagnosed, I would have searched and hoped to find something like this blog, where I could realise that things don’t always turn out how the doctors think they will, to have anything that would give me hope. But how cruel for those whose attempts at gaining more time are thwarted at every turn. Nothing works for them, it all works for me, at the moment, anyway. A friend of mine says I have “survivor guilt”, and for my own mental health I must let this go, but it’s not survivor guilt I don’t think, but white hot fucking rage as to why they can’t work out why this is so, so everyone can have successful, life extending, hope gaining treatment. I am living a life more ordinary, and it’s all I wanted (for the time being anyway). I can almost always take my kids to school, pick them up, put a meal on the table, and I am taking more stress of Gaz in every way that he can – I am proud to say that he hasn’t missed a Saturday golf game all year because I have been too sick for him to go. It’s his outlet, the only time he doesn’t think of it, he says, so this means a lot. I want this for everyone. EVERYONE.

I am very excited about going to Thailand at the beginning of next month….something many people helped make happen for me. It sounds really strange, but one of my first thoughts when I was diagnosed was “I’ll never go overseas again”. It will be a triumph to walk through those “International” gates. And I know that I will come back refreshed and ready to do all the things I want to do.

Ever since I started going to chemo I was saying to mates that if I was cured (liver resection still on the table then, of course), then I would pretty much devote the majority of my time when the kids were at school etc, finding gaps in the lives of people with cancer, and working out how to fill them. One thing that really upset me was the amount of people that came to chemo alone, especially the elderly, who arrived in veterans taxi’s, or patient transport, and left in it, alone, and unlikely to have anyone fix them dinner when they get home, after horrific, rigorous and scary treatment. I want to somehow work out how to match up a volunteer to these people, to sit with them and have a chat and maybe cook them a meal to have that night. It seems so simple…there are so many lonely people out there, and others who want to do something to help people, but I honestly have no idea how to make these matches happen. Any ideas? I’m going to start with myself, I am going to match myself to someone reasonably local and do this for them, but I honestly don’t know where to go from here.

The other one is the wish granting charity that a friend and I want to set up in my name. It will be a little different than others, in that it will be for mums who are terminally ill to have a special memory with their children. I don’t know exactly how it will go, but my friend has already started some groundwork, and it is going to take a bit of setting up, needing lawyers, a committee of people who don’t know each other, much much paperwork. I don’t want to crowd fund anything, this is my way of giving back to people what has been given to me. We are thinking of starting out with a benefit concert, but where do we look for funds after that is exhausted? Philantrophic trusts? Private companies? Grants? If you have any knowledge of this stuff, please contact me. I really want to get moving on it as soon as I get this radiation over with and get back from Thailand, so I want to be armed with as much knowledge as I can.

See you after the post chemo craptacular. Cross everything for me it is the last for a while, please xx

Love and hope to all who need it.

9 Comments on “Wishing and hoping

  1. Julia, I may be able to assist from a distance with your idea of a Not for Profit help/mentor group .I have experience in several different areas within the disability/ young family care sector.,of getting such groups off the ground here in Qld.The only couple of major issues that I can see would be
    1.distance
    2.the differences in State laws regarding NFP’s and requirements as relative to such an organisation etc…
    3.Access to funds, sponsors. etc,

  2. My name is Kate O’Sullivan I run my own business called On A Mission Fundraising- your cause, our mission. I have worked for a not for profit charity for 10 years and after having my daughter now 3.5 years and being just her and I , I decided to start a business to help those in need. I would love to help if I can. Please contact me kate@onamissionfundraising.com.au I have a Facebook page and my website is coming soon.

  3. Hi lovely,
    You know I am super keen to help with the charity side of things.
    I actually managed a program called Connect at Cancer Council for several years, we matched newly diagnosed patients with our volunteers who had been through their treatment and were further down the track and able to support others. I know all about the ins and outs of working with volunteers, the ‘matching’ side of things – I managed a team of nurses who did the actual matching, so it was a very sophisticated program and something to possibly use as a basis and aspiration for your idea of matching volunteers with those having chemo. I would be the first to volunteer my time to take someone to chemo and help them afterwards.
    I would also put my hand up to be on your committee/board when setting up anything you decide to set up.
    I have 15 years experience in Fundraising/Marketing in the AUS charity sector, so I can help in so many ways in this area too.
    Please email me when you can xx

  4. Hi Julia, have you heard of the charity called Mummy’s Wish? They helped me when I was diagnosed. They assist with house cleaning, debit cards, transport to appointments, ipads and wifi for those in hospital along with other things for mums with cancer. They only assist with cancer patients in QLD and the Sydney area and it really sounds like they need something similar to this in Victoria.

  5. Hi Jules, good luck. I met a lady with stage 4 brain tumour the other day and she started telling me she had cancer, I asked a few questions, with correct terminology and she looked at me funny and said how do you know so much about cancer? I stammered a bit, it is because I have been following you for over a year and I then said because a friend has it (that friend was you because that’s what you now feel like to me) fingers crossed for you and your family. Sending light and love. X

  6. I also wanted to say I am a different Jacqui from the one above (coincidence) :) I am from Tassie and have done some fund raising…maybe you need sub committees in each state…I might be interested. 😄

    • Working with someone to fix this, thanks Cate and sorry for the annoyance x

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