One year, two years, red years, blue years

Just a bit of rhyming slang with good old Dr Suess there in the title!

Yesterday Team Jules gained another specialist doctor to add to a very impressive list. I am a candidate for the lung radiation, and the doctor was more than happy to do it, however, he thinks I don’t need it yet! It wasn’t really what I was expecting to hear. For a start I thought I would have to beg him to treat me, I thought my liver might be just too bad to consider me, despite it being well controlled at the moment by the treatment I had before Christmas. But no, he was more than happy, and even spoke of looking at my liver tumours down the track and seeing if there is anything he can offer for that as well, though he did realistically point out that they are large, and not well defined. I just really liked him…he kept saying the words “years” and “me” in the same sentence. I finally said to him that no one actually speaks those words in the same sentence. He shrugged and said that based on what he saw, and the potential for new treatment that he couldn’t see any reason why I couldn’t live one year, two years, maybe more. Of course it could also realistically turn to shit in five minutes flat, but I would rather measure things in groups of 365 days. So, the lung tumours are tiny, he showed me them on the scans and they really are small, so his advice was to wait until they started taking off a bit and then he will treat them straight away. He also offered me the chance to choose, and if my mental health could not cope with them still being there and waiting for the tide to turn, then he could also do them straight away.

Fact is, I need a chemo break – badly. It is weighing heavily on me mentally, I have had 25 cycles now, and although I cope very well physically, I am starting to get so, so tired. Body tired, and mind tired. The SIRT has made me better, there is no question about it, the improvement in my liver function has meant that when I have good days, they are literally better than they have been in more than 12 months..in fact, sometimes I think better than before I was diagnosed. I knew the treatment had worked before the scan, and I think I will know when it stops working too, so if I could also get the lungs controlled, I could just breathe again for a little while. So, the new doctor called my oncologist, my oncologist called me, and we decided to wait until the next scan in 5 weeks, and make sure the liver is really behaving like we expect it to be, and if so, we will get me in for the lung treatment (very low risk and due to the high doses, over in the space of a few days), and I will jump off the chemo train for a while and see what happens. What I want to do to that cock bottle when connected to it would come with an offensive language warning that might even shock my blog readers, so I will leave it up to your imagination. To add to this, while I am full of energy on good days, I now spend approximately 3 days per fortnight asleep from when I get home from the school run, until I leave to pick them up again. It’s too much. Too many hours I can’t wrest any quality out of, and to a woman running out of time that weighs heavily. I will start to go downhill in the noggin on Sunday night, knowing I am going in for chemo on Tuesday, and that sucks yet more quality from my life. I will be ok now I know I have something to work towards, five weeks, two more cycles…..sweet relief for a while I hope….a normal life for a while, that is all I ask for at the moment, and at this stage of my life, much more than I thought I was ever going to get. I am weary, but grateful.

Naturally a lot of people want to know about this therapy and whether it is suitable for them, and I urge you to find out. If my oncologist had not found it, I would never have known about it. It is certainly not for everybody, in fact not even for a lot of people, but for the people it is a match for, it is a very promising time adder. So, to make it easier for people who want to know more about it, it is called SBRT (Stereotatic Body Radiation Therapy). Google it, have a read, ask your oncologist about it, and if it is suitable you can ask for a referral, it’s available in several states. It is of particular interest to those with spreads of colorectal cancer to the LUNGS, if tumours are not too numerous (but that is up to the doctors to advise, not me). I hope this helps someone.

So much crazy fun for me today! My friend and editor who publishes a lot of my writing on Essential Baby, was unable to attend a product launch here in Melbourne and I was lucky enough to get the opportunity to go in her place. It was a lunch with Lleyton and Bec Hewitt, who are brand ambassadors for the Hans Oliving range (smallgoods with olive oil to make them healthier, you have probably seen the tv ads). It was really lovely, especially just sitting around talking to other writers and journalists, while we waited for our interview slots with Lleyton and Bec. I thought how this was a crazy magic (sometimes almost tragic), awful beautiful life. Those are the lyrics of a country song in case you are wondering. When Gaz and I met and he said he was into country music, it was almost a deal breaker, but now I am more of a fan than he is. Anyways, it is THAT kind of life, still a life worth living, around the shit. ALWAYS a life worth living. I’ll keep on fighting for it, forever, but I just need a break, I need to breathe for a while. So folks, one day you can be consulting specialist about trying to stay alive, and the next day interviewing the Hewitts. They were absolutely charming by the way, here is yours truly getting her photo taken with them after the interview.

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And what of this guy, here with me yesterday after our very positive appointment:

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He’s not a big one for smiling in photo’s, but he’s happy, honest :) I love him so much, I couldn’t do this bullshit without him. When I saw, out of the corner of my eye, the fall of his shoulders yesterday as he heard the doctor agree to treat me, makes me realise how bloody stressed we are most of the time…holding our breath until someone tells us it is ok to exhale again for a while. Valentines Day (which neither of us acknowledge in any way) was spent in Costco, and we had a rip snorter of a fight on the way there. It was my fault, he said something that set me off and I went completely mental at him. It is the sort of fight that you are very ashamed afterwards that you had in front of your children, and I apologised to them for having to see it. It’s not cool, but it’s life I guess, well, it’s my life, you do things you aren’t proud of, you say sorry, you have to move on. After 16 years, I am glad we have the fallback position of genuinely loving each other. it’s probably the only reason that this hasn’t put an end to us, and both of us can understand how many marriages don’t survive this chronic / terminal illness business. I’ll fight for him forever too. We had respite (care for our children for four hours fortnightly, due to Georgia’s Down syndrome) on Tuesday night and we went to a restaurant in St Kilda. We were edgy (as the appointment was the next morning), but happy. We were outside the restaurant, and I walked towards him, and he quickly snapped this picture:

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I popped it up on Facebook, and quite a few people were struck by it and said how obvious it was that I was looking at the man I loved, and it was very quick, very natural, not contrived. Even I can see it. So, I think we’ll be alright – we have to be.

Just to keep it real for you all, after my glamourous day with Lleyton and Bec…I was on the way there in the car, and my stomach was making the most awful noises. Not since I penned the post “Let me sing you the song of my people” (whack it into the search engine if you haven’t read it and would like to) were things QUITE so noisy. If you think of a volcano erupting, but quieter, but not much quieter, then you would be close. I was like WHY NOW? And what if it doesn’t shut up while I have a private audience with that lovely pair. Thankfully by the time I got there, the festivities appeared to be over, but it certainly puts one in ones place if they think hobnobbing with celebs puts them above the station of the common folk!

Til next time, much love and hope to anyone who needs it xx

9 Comments on “One year, two years, red years, blue years

  1. Wow.
    If anyone had of said to you a year ago that you would get to interview the Hewitts, would you have believed it?
    I hope you get more and more good days.
    Cheers

  2. So much of what you write makes so much sense to me and I wish I could explain our situation as you do! Thanks so much xx

  3. There is nothing stranger than life, is there? From the corridors of chemo to the lovely Lleyton and Bec. Those days in bed have to be a balance for some of the excitement. Sounds good to me. So glad you are hearing lots of good news about treatement.

  4. Just wanted to say that I have been following your blog for about a year now, and I admire you for the strength and humor that you are able to put out there even on your bad days. A funny story I have, was about two weeks ago, I was waiting to have my mammogram, and they put you in a room and all the women waiting are behind closed doors, so all you can hear is our voices, well one women piped up and said they should make a movie, with just our voices, and I said “yes they can call it Breast Cancer behind closed doors” well that got a few laughs, and probably relieve some stress. I too am heading into a appointment on Monday, to have a ultrasound and extraction of either a lump or cyst, this is the first time this has ever happened, so I am a bit nervous, My mom has had breast cancer twice, so I am high risk, but I am grateful for the technology we have and the healthcare, so here’s to the lumps and bumps of our lives, the good, the bad, and the ugly :)

  5. Told you you were a rockstar!!! Keep going Jules, you are doing a great job. See you soon xx

  6. AWESOME NEWS. Fancy that meeting the Hewitts you are a marvel keep on keeping on in your lovely true style Julia xxx

  7. I just wanted to pop in and say hello. I just finished your beautiful book and wanted to reach out to you as I’m in awe of your ability to fight, see the positive and continue to help others. You write so well. I’m not sick but did need reminding that the days we have with our children are so precious. I love that photo of you looking at your fella and that you had some good news from the doctor. I hope Bec & Lleyton knew what a special lady they had in their presence. Keep on fighting the fight and take care of you. x

  8. Hi Julia

    I just wanted to write a BIG thank you to you and your wonderful writing. I have spent the last week reading your blog from start to finish as my family is experiencing the same as your family but on a smaller scale… as i only have a 13 year old son to get through this. I am the equivalent to your “fella”, my husband has been diagnosed with Bowel Cancer which also has moved to the Liver at the age of 48 in May 2015. This came completely out of the blue, there were symptoms and my husband was only at the doctors as he couldn’t shake a flu. As you well know this turns your life upside down and you feel that you are living in a bubble, trying to pop your way out of it, as i never expected that this is where our life would be in our 40’s. Luckily, all going well, John is responding well to treatment (touch wood) and we continue to live our life in three week blocks.

    But you have given me great inspiration, to ask more questions, ask what other treatments and therapy there is, so again thank you and i look forward to reading more and more from you.

    Sharon

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