Putting the quality back into my quantity

It’s been a difficult few days to say the least.

First I spent most of the weekend and all of Monday plagued by what I thought was gastro.  My chemo tablets can cause similar symptoms, but I had never been affected that way before, so it didn’t occur to me.  Monday night I went to climb the stairs to join my husband in the family room, and I only got up 4 stairs when I realised that I could go no further – I could hardly breathe.  Even then I didn’t think much of it, as I get mild shortness of breath in the third week of every cycle.  I realised it was a lot worse, but I just took myself off to bed.

The next morning after Gaz left for work, I got up to go to the loo which is about 10 feet from the bed, and when I got there, I realised I couldn’t catch my breath at all, it was TERRIFYING, definitely the scariest moment I’ve had so far.  I managed to get back to bed and rang Gaz and told him he had to come home and take me to the hospital.  When he got home I still hadn’t bee able to get my breathing back to normal despite laying still for an hour, and we ended up having to call an ambulance.  When they got there my heart rate was 170, and they conveyed me straight to hospital.  Initially it was thought to be a blood clot, but amazingly my chest CT scan was clear.   And amazingly, according to them, actually clear…my lung mets can no longer be seen on the scan.  A bit of a silver lining for sure.  The chemo is WORKING.

So, we knew what it wasn’t, they had to find out what it WAS.  After several hundred more vials of blood (bloody well seemed like it), and something called an “arterial blood gas” (if anyone says you need one of these RUN, they fucking hurt), the answer was in.  Something called “metabolic acidosis”.  In other words, chemo toxicity – my body is just not coping.  To be honest, I knew it, my feet are falling apart, my energy levels are close to hitting “none”, the “gastro” was actually the chemo.  When I was in hospital all these different parts of my body kept cramping up, my hips, calves, inside my stomach where my bowel used to reside.  I’m falling apart, and I know it.

I got out of hospital this afternoon in time to attend my pre-chemo appointment with my oncologist (chemo scheduled for tomorrow).  He is used to me fighting him tooth and nail about everything, I feel like a real thorn in his side sometimes, but at the same time, I have realised that you must be very knowledgeable and proactive about your treatment when you have cancer.  I wasn’t in fight mode today though, I was just too fucking broken my having to be back in hospital, to have another “close call”, to have needles and drips invading my body again, the sights, the sounds, the smells.  I wasn’t in long, but it really really got to me this time.  This time I was just ready for a straight conversation about how I can feel better.  He’s earned my trust by always being bloody right about EVERYTHING, even the bad shit.

He asked me how I was, and I said shit, which was his first surprise of the day, as I usually go bouncing in there full of Jules beans.  Not today Josephine.  He knew about all that had occurred in hospital of course, and he said how about a week off chemo, which I agreed to.  Another shock for him, I normally fight him hard to treat this aggressively, constantly worried about the quantity of time I will live.  Then I levelled with him about some of the other things I have been battling symptom wise.  I internalise a lot of this stuff – very few people would ever know what I was going through to look at me.  I don’t do this to be secretive, or dishonest etc, but simply because emotionally it works best for me.  Today I let it all out and it felt good.

Then I brought up the WA trip and he said the words I was both hoping for and fearing.  How about we have a scan next week, ahead of the next cycle, and if it’s shrinking (we are pretty much expecting it will be – well I am anyway, encouraged by the chest scan), how about we just stop now.  Not forever, for a while.  He said the WA trip sounded fabulous and relayed some of his own adventures in WA, and he thinks we absolutely should go.  He can’t however support me going while on chemo, as an infection could escalate and kill me very quickly, and it is too isolated to access medical treatment as fast as we might need to, if i am immune compromised, which I would be on chemo.

To be honest, he sold the idea to me quite easily.  He said go to WA, have the best time ever, and we will do a scan as soon as you get back.  Trip of a lifetime, and he feels pretty confident that on chemo break I will feel normal, healthy and happy, and really be able to enjoy it.  He was firm but kind when explaining to me that while we both of course hope there will be many, many trips, and there may well be, there is a possibility that the time won’t come for this again.  Then he said the truest thing of all, but one of the hardest things to face – “we’re looking to give you quality of life now Julia”.  It’s about finding a balance, and in all honestly, lately there has been very little of that – especially in the last week, I have REALLY gone downhill.  If I keep on intaking toxic chemicals to try and extend my life, it’s only going to get worse, and the real kicker is THEY might kill me.

I gave him a brochure of the book, because god knows he is in it enough.  He said of course that this is a once in a lifetime opportunity for ANYONE, not just the dying, and he is really keen that I should enjoy that time as well. So, the plan is scan next week, if it’s good, start loading up that funbus and buzz off for five weeks or so, and then come back and straight into another scan.  If it’s still stable, we will increase the break to cover all the exciting book launch events etc- basically we will keep it going as long as we can, and at the first sign we need to recommence treatment, we will.  That day will inevitably come, but he feels strongly that in the meantime, I can have a good few months of really good quality life before we hit it again.  I’m really looking forward to it.

I can’t say it hasn’t been a hard day, it is scary for anyone with cancer who is having chemo that is WORKING, to stop it.  But I am starting to have a small glimpse into why people stop chemo and enjoy what time they have left.  I am NOWHERE NEAR that stage, and I still have quite a few treatment options up my sleeve which is great, but my god this treatment is so brutal it can (literally) suck the breath right out of you.  It’s time for a good time, and I can’t wait to get started.

Boring hospital pics are boring 😛

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11 Comments on “Putting the quality back into my quantity

  1. Bless you Julie for your honesty, your journey is a big old mixed bag isn’t it? I hope you get to go on your big bus trip – it’s a fabulous idea and WA is divine. Your girls will never forget it. Hope your scan is good and the toxic chemicals gradually leave you in peace. Looking forward to your book launch too !!
    Much love xx

  2. As a Mum of a 15 year old son with a terminal illness, (no cure 100% fatal) I understand fully what you are saying and doing, we chose to have money for excursions and experiences with our son rather than buy a house. We travelled around Tassie for 5 weeks in our caravan 6 years ago before my son was in his wheelchair fulltime and both kids still recall that time fondly. Your kids will gain more from your WA trip than you may even realise at this point. Am waiting with baited breath for the release of your book. Good luck, kick cancers arse xxxxx

    • Yep, we are whipping the cash out of the mortgage, and I think it will be so wonderful for the kids. Hard to convince my 11 year old daughter of that though, she doesn’t like to miss school and drops to the ground regularly, saying we are only trying to ruin her life. Kids, eh? xx

      • Hey Julie, get her teacher on board. Have her set the 11 year old a project to complete and if your daughter is the type, have the teacher encourage her to give a presentation to the class of her experience.
        Perhaps if she can see it as an extension of her classroom, she may be a bit more enthusiastic.
        I’m sure though that she’ll be really excited once you begin. :)
        Keep making the memories. :)

  3. ‘Tis late in the evening as I read your post and I am feeling very sad that your days have been so painful and difficult. I hope you are sleeping peacefully and awaken tomorrow feeling refreshed and able to enjoy a new day.

  4. Sending my love and thoughts xx
    Thank you for taking the time during your pain and feeling so broken to put it all into words so that so many others are connected and less alone :)

  5. WA is a blast and only you can make the decisions, the decision for you at the time. Sure the Onco has to make sure you are fully informed and I’m so glad he is on the same page as you.
    I hope you are feeling better.

  6. I have been reading your archives and you are extraordinary, you truly are. I am keeping my fingers crossed for you and your lovely family and the happy ending you deserve. Love and light to you.

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