Thursday, June 7, 2012

Good Week: Bad Week

What started out as a routine monitoring scan with my sarcoma and dealing with pain from a perceived muscle spasm issue has resulted in a few days in hospital and a whole lot of new information, mostly bad.

The mid to long term outlook of my sarcoma has always been been poor but the speed of progression and biology indicated that it was slow moving and this was very good, e.g. the single and only tumour in my lung they cut out in November was just .5 cm (after maybe 3 years growth); with slow growth they have lots of treatment options. When tumour pops up they just spot radiate/laser or surgically remove. Many people last 20 years with this approach. When you get metastasis spread (secondary cancer) of synovial sarcoma it seems difficult to cure but they are very good at delaying any spread.

Arrows identifying some of the Mets, round cricket ball
likely cause of pain issue
Bottom line; I now have multiple new tumours in and around both lungs, one very large 5 cm in right lung (See Pic) which is causing the pain issue and is also starting to impact breathing. The main issue is its aggressive nature and speed that this is developing and the limited options for treatment.
They've ruled out surgery and I am in palliative care; the aggressive nature of the tumours has opened one door on a chemo (Ifos) regime which is good at attacking fast growing tumours; I'm expecting to start this treatment next week. There is an outside chance of cure, but most likely this will just buy us some time. 
Heathier lung - Dec 2012
The medical team have done a great job settling things down and getting me on a new pain regime. Its still uncomfortable and I'm am very limited on what I can do physically, but its manageable and I'm enjoying life.  They believe the pain is being caused by the large tumour pushing the lung lining against the rib wall and catching nerves which are on the inside of the ribs. I do believe in miracles and if I'm due one I'm hoping it will come soon. 

But I have things to do and the fat lady hasn't started warming up her singing voice yet.
- Family holiday, assuming treatment goes well, beaches, heat, water and piƱa coladas sounds like a good idea, or maybe a holiday or two in a central otago or otematata crib.
- Family wedding, Nephew Tom and Jen are "going to get married ", thats going to be so much fun
- Few old mates incoming for property makeover (& a few beers and tunes)
- and finally my favourite thing; just time with Kat, the kids, whanau and friends.

How am I feeling?  Its a bit surreal, we've grieved and been sad at many times during this cancer journey. We knew the odds weren't great but certainly didn't think that it would accelerate like this.  I want to be in the best possible state (mind, body & soul) to again fight and overcome if possible. My Christian faith is providing me with a strong base and comfort as we face the next few months. Please add me and our family to your prayers. 
Life is such a wondrous and precious thing.


  1. Gary, if beating cancer was solely mental/spiritual you would have already had your miracle. Your thinking and positiveness has influence -it makes a difference to my life. To followers of this blog and other family/friends - there is a PILLOWCASE PROJECT about to begin. The idea is you draw a SMALL picture/symbol or write a short message to Gary and send it to me - it is best if these are black and white (i.e. drawn with a Sharpie pen or it can be a digital file.) I will assemble the contributions together and make up a screen, then screenprint our collective prayers and love onto a pillowcase. Could be nicer than hospital pillowcases when getting chemo. So, if you want to graffiti a pillowcase please send me your contributions to or 47 Beaconsfield Rd, Portobello Dunedin 9014 by Friday June 22nd.

  2. GT, so many people gain strength from your positive and courageous outlook it's about time we turn that around and send all our positive and courageous thoughts to you. Nathan and I have you, Kat and you beautiful kids in our thoughts and will send all them down hill and around the bay and over the water, they will come in waves and ripples and hopefully ease some pain. Holiday in the sun and pinacoladas sounds like a great idea!! Jodi & Nathan x x

  3. ... add to this more waves and ripples coming across the pacific :-)

  4. Best of luck, my thoughts and prayers are with you and your family at this time. Kind regards, Paulina

  5. Thanks for well wishes , they really help. Chemo (high dos Ifos) due to start Wednesday and in hospital to Saturday. on a 21 day cycle and will have between 2 to 6 cycles depending on effectiveness. Had a very relaxing weekend and I'm ready for treatment.

  6. Gary, your strength and courage is an inspiration. I send you and your family an immense amount of love, support and well wishes. You are in my thougths. Kerry Kara xx

  7. Gary and family, my support and thoughts are with you. Peter

  8. Gary, I must admit, I was waiting for my results around the same time as you and when I clicked on your blog and seen the picture of the mets I couldn't even bring myself to read it. After getting my results today (all fine) I've finally plucked up the courage to read on.

    I'm glad I did. It seems you're KIND OF in the position I was in a year and a half ago. I had no mets, but I had a 17cm, very fast growing, tumour in my lung which was considered inoperable and I was told chemo and radio wouldn't get rid of it. The phrase 'buying some time' was used when explaining my high dose iphos and dox regime.. which worked AMAZINGLY! After the first dose the tumour (which was growing from my chest wall under my armpit and pushing on my windpipe had shrank back from my windpipe about 3cm!! Anf it continued to work really well until the surgeon decided he could possible deal with it. So I was told I might have less than six months to live a year and a half ago and now I have NED!! So please don't give up hope. You have totally inspired me through out my synovial sarcoma journey and I hope maybe my story can give you a wee bit of hope in return.

    I've been preparing for having to accept death at a young age as I know it's a possibility now and i'm nowhere near out the woods. I have read some really helpful books on death and dying which helped me immensely. Although I'm still struggling with the acceptance.. i'm certainly working on it. Basically you need to hope and try for the best, but prepare for the worst I think. I like to try and 'be in the moment' as much as possible, appreciating and relishing the wonderful family I have and world I live in.

    Sending good thoughts your way, hang in there!!


  9. There are so many things that are still hard for me to do and visiting your blog is one of them. Please know that even though I don't come here often I do think of you and offer silent prayers. I will continue to pray as you continue to fight the sarcoma devil. Peace.

  10. Note for Michelle: Thank you for your heart felt comment; it hit my phone and I read it when I was at a very low point of the first chemo cycle when I was very sick and feeling sorry for myself. Your points are spot on and at the time were so helpful to rekindle the fighting spirit. THANKS!

    Three days post treatment and I am eating again and it's delicious. Free range organic eggs poached and tomatoes on toast for lunch, mmmmm. :-)
    I agree and will try to stay and appreciate the now.
    Most kind regards

  11. Nice one Michelle! All I can think to say is that if you close your eyes real tight whilst eating poached eggs and tomatoes I am sure you can imagine a hint of that pina colada you mentioned earlier????? Love from the cousins in the sticks....


Thanks for your comments Gaz