Merry Christmas

Chemo or not Chemo, that is the question?

This week we have been going through the decision to commit to chemotherapy, or not. We have been assessing the side effects, risks and benefits. Our recent NED result certainly shows we are on the right track and that I am responding to treatment, but it doesn't mean that the cancer is gone and I still have a high risk of tumour regrowth or metastasis spread. This is a long term journey and we need at least a couple of years of good results before the prognosis significantly shifts for the positive.

Unlike other cancers chemotherapy isn't particularly effective on sarcomas and the % improvement on my prognosis isn't great, but marginally good enough. Our aim is to eradicate the cancer from my body and the timing is right to use this treatment to assist with this. How it works is that they use drugs that destroy rapidly dividing cells, such as cancer cells, immunity, hair cells etc. The chemo drugs don't differentiate between the good and bad cells, so as a result side effects. Unlike the surgery and radiotherapy which are localised to the area of the tumour, chemo is systemic and treats and affects the whole body. More info about chemo here.

So based on all the information we have decided to commit to the treatment and my regime starts 10 January. It will involve 6 treatment over 18 weeks. I will be admitted to hospital for 3 days for each of the treatments and after 3 weeks and some recovery we repeat the cycle. The side effect are on the moderate to bad side of the spectrum, compared to other cancer chemo treatments.

The easy answer would have been not to go with the treatment, it will be pretty unpleasant. But for me probably the biggest factor in making the decision was the hypothetical question if in the future the cancer had returned and I asked myself if have I done everything possible to conquer this cancer and save my own life; what would I say.

T Shirt Competition Entry

From Dave

From Fay, this entry was made of chocolate and

fudge and has been eaten by judge.

From Peter 

From Ben

From Diana

Frrom Freya and Diana

From Anon

From Dave in Canada

I am NED

Good news at the our sarcomas specialist yesterday and the histology report was good. Hooray!

Essentially the histology work studied the microscopic structure of the tissue excised in the operation and they were especially interested in areas of margins including spine. There is no evidence that there was any cancer in spine, now or ever, and they essentially confirmed that the original soft tissue cancer site is clear.

So earlier we got a clear reading that there was no secondary metastasis to lungs and now with the clear reading on primary tumour site we now move into NED status. NED is a cancer survivors term. not medical term, and a status that we all what to get to.

Can the Cancer return to primary or secondary location. Yes I am still high risk and will be monitored every 3 months. Overtime the risk reduces and frequency of tests will reduce. Big parties at 2, 5 and 10 year marks.

Discussed chemo briefly and its referred to another specialist in Mr B's team and a consultation another day.

Also he reaffirmed that physical recuperation was as expected and that it will take months to recover from. This has been a massive operation to core of body and to take recovery steps in 6 week windows. Currently no Physio allowed, gradually increasing light walks, aqua jogging and excercycle in a few weeks.

So in light of this great milestone I would like all my creative friends to put in some thought for an "I am NED" graphic and I planning to use the favourite design on a T-shirt &/ or hat, plus all entries sent will be posted on the blog.

Dancing with Ned

We are meeting with our sarcoma specialist this Wednesday the 8th to get pathology results back and to discuss progress from surgery and next steps.

One thing we are hoping for is to get to NED status, which means clinically they can't detect the cancer or any secondary spread. More on what NED is on this earlier post. This doesn't mean that the cancer is gone but it is a very good milestone to get to. It will take a couple of years of positive tests and staying in NED status for the prognosis to improve.

Kat has found a suitable bottle of wine which is on ice for later in week.

Images of Sarcoma (graphic)

For the reading impaired I have inserted a new tab to the blog which includes before and after images following the various procedures. Some are a  bit graphic so don't click through if you don't like icky.

Click Here New Tab with Images of Sarcoma

Be Still and Smell the Flowers

Sorry for the lack of updates, but I've been laying pretty low here. Making good progress although slow progress. Spending most days rotating around 3 luxury recovery zones I have around the house, plus time outside on balcony and in garden. Lots of time spent reading, lounging, movies, music and of course sports TV. Plus enjoying lots of great visits from friends and family.

Recovery from the first operation was a walk in the park compared to this one. With benefit of well managed pain killers I feel good and physically getting around OK. Hemoglobin still low, due to high blood loss in op, and not enjoying the lack of vim this causes, but I am enjoying the high meat diet that builds the blood back up. The wound is healing up good and I now have an eye popping war scar on my back. At times I've been overactive and following my body pays me out and sends a clear message that we are still in recovery mode and to slow down. Doctor was reluctant but has now provided a referral to ISIS, a specialist recuperation physio centre at Wakari Hospital and I should be active with them in about 3 weeks. I'm looking forward to regaining my dexterity, strength and vitality.

Early on in my blog I had set some optimistic goals due about now which separately involved my chainsaw, golf and a hard party. Well it's good to have goals but I was probably a month or two early, but look out I will get there.

Our frustrations are often driven by our own expectations and inexperience; Personally I haven't been experienced with being laid up and I get frustrated as I have things to do and my body is unable to respond. I need to have patience, let the healing do it's thing and "be still and smell the flowers".

Summer has come out with abundance on the Peninsular, beautiful hot days with lots of colour in garden and activity on harbor. Picture attached is from a hanging basket on our balcony. House has also got lively with the kids home and school years coming to and end.

Ciao for now
Gary

What a difference a day made

I popped back to life over the weekend and getting back to the state of wanting to participate in every day things. Friday and Saturday last, I pretty much slept most of day (and night) but following that the grey has cleared.

  

The picture left is King Theoden under a spell in Lord of the Rings and I have always loved the imagery of Gandalf enticing him out of his spell. I think a lot of us at times can get covered in a greyness, my issue was major surgery but often it's other life issues that affect us. My Galdalf on Saturday was Kat who enticed me from bed with a half a glass of Guinness and an offer to sit on our deck and admire a particularly beautiful evening. 

Recovery has been progressive and not as dramatic as King Theoden, although I feel in my mind it was a significant weekend. I had my first major outing yesterday and went to church, which was a bit daunting but I'm pleased to have done it. We had a fun full day following with friends and family at home and I was comparatively very active. Another first was last night I slept through night without need of additional  painkillers.

Physically I am able to do a lot more, twist in the torso, easily getting up and down, arms above my head and stable walking, including on uneven surfaces. Healing is going very well, with a lot of stiffness in spine gone, the wound healing well and swelling reduced.  A problem I have now is I cant do what I would like to do. No strength and although improving the length of activity still very short. I still need to be horizontal for most of day or else pain kicks in, but fantastic having mind engaged. I can foresee and looking forward to physio and exercise in a couple of weeks time and in no time I will be boundin around like normal.

Click HERE to put a smile on your face and to learn more about boundin and recovery from setbacks. (To Kat, friends and family, thanks for being my Jackalope)

Bottom of the garden

Slow progress or poor attitude

Doesn't checkout from hospital mean checkin to life. Maybe taking it a bit easy but surely that "3 weeks rest before Physio" didn't mean 3 weeks no activity and long periods in bed. Progress here has been frustrating slow, or shall I say was slow until I adjusted my poor attitude. Kat often says listen to your body and I think she is right, sometimes your own expectations are misguided. My body is very tired and sore and through lots of rest I am slowly getting better and stronger each day. There has been no infection or complications and the wound is healing well. My Dunedin Orth Surgeon did a home visit to take out staples and was pleased with progress. My back is still very swollen and I am bent and hobbling around like an old man which I don't like, but don't have the strength and perseverance to deal with yet. A job for another day.

My appetite has returned with gusto which is very timely; we have had a daily arrival of the most delicious meals each night from friends in the community. We are very fortunate and enjoying being lavished with food.

Over next week I am hoping to get a bit more active but will just go with the flow and see how the body is feeling.

"Hasty speed don't oft succeed" Old Dutch Proverb

Something to Strive for

Surgery 2 by Pictures

Checkout from Hotel Burwood today

Heading down to Dunedin on a Jet late afternoon. looking forward most to seeing the kids xoxoxo. Feeling fit for journey and it should go smoothly.
   
My experience at Burwood Hospital has been very good, the nursing staff generally are very friendly, caring and competent and I've been in a nice sunny single room with a door out to grass lawn and garden, plus wireless internet. Most of the time I have had my own personal nurse and companion, Kat xx, which has made stay and recovery far easier and fun.      

Thanks to my Christchurch mates for all the practical support and calling in to chew the fat. Also thanks to Kim at Christchurch end and Royce at AIr NZ for help with logistics getting home.

Biggest thanks to the surgical team lead by Gordan Beadel (Sarcoma) and Jeremy Evison (Spinal Surgeon). These guys walk on water and I have been very pleased to be under their care.  More on this later.
 
I am on high levels of pain killers and strict instructions to lay low for a few weeks.   It's going to take a while to get use to and break in the new back, it feels very stiff and foreign. I need to fully recover before getting into Physio and full on exercise. I am sure I will come to terms with it and recover sufficient mobility, but it will take a while.

Another milestone nearly ticked off. Hoorah

7 days on - Look mum no crutches

This has been an incredible week of healing, obviously pretty bleak after the operation but the body is an incredible healing machine and things are looking a lot brighter at the end of the week. Today I walked short distances without crutches, picked stuff up off the floor, walked up some steps, showered myself standing. I can only handle activity for 15 minutes or so but major and continuos improvement. I have had a clear head since yesterday which is probably the biggest advancement. Still on some significant pain killer and these will continue for a few weeks. We have now got them well balanced so no more 'wonderland' or high pain times.

If you are facing this surgery I don't want the above to indicate that this is a walk in the park, it's not and expect a very tough first week and a number of very low points. But these are generally short and sharp and you progressively get your abilities back.

The fusing of my spine and titanium rods cover from the very base (affixed to the pelvis) and comes up to the middle of the shoulder blades (about 40 cms). The rods are firm although independent which I have discovered is important. You can't touch your toes but you can twist.
Funny enough initially it felt like having 2 rods on the inside of your back but now I don't feel them as such. Its like when you go to the dentist and have some work done and initially you feel the changes done and it feels really odd, but after a few days you don't notice it.

The wound and my tummy are very puffy and I have joined the asymmetrical belly button club as it is a couple of cms off centre, otherwise all things are looking good and I expect an earlier release. Key risks are infection and wound healing which is apparently a lot harder due to the recent intensive radiotherapy.

So have flights booked home for Monday afternoon

Savaii Lagoon, Samoa, Family Pic

Coming to terms with my new body frame work

Titanium (pronounced: taɪˈteɪniəm) is a chemical element with the symbol Ti and atomic number 22. Sometimes called the "space age metal" it has a low density and is a strong, lustrous, corrosion-resistant (including sea water, aqua regia and chlorine) transition metal with a silver color.
Titanium was discovered in Cornwall, United Kingdom, by William Gregor in 1791 and named by Martin Heinrich Klaproth for the Titans of Greek mythology.
Titanium can be alloyed with iron, aluminum among other elements, to produce strong lightweight alloys for aerospace (jet engines, missiles, and spacecraft), military, medical prostheses, orthopedic implants and other stuff.
The two most useful properties of the metal form are corrosion resistance and the highest strength-to-weight ratio of any metal. In its unalloyed condition, titanium is as strong as some steels, but 45% lighter.
Source: abbreviated from wikipedia. 
(Notice the pronunciation, TAI teɪniəm, TAI was an early nickname and still used by old mates, I like that. Up early and sore but doing really well. Waiting for the drug cart to do its round, have discovered a wireless network and got my ipad going which is very exciting. I don't recommend updating blogs by mobile phone, ciao for now Gary)

Turning the corner

After a few mixed days I hopefully have turned a corner and doing pretty good. i have been showering and walking around on a frame for a couple of days, first day I did to much and was very active and had a very sore night. We sorted out and increased pain meds yesterday and its making a big difference. Physio also sorted me out saying basically to pull my head in and that having a shower and walking to toilet was all I should do in the next few days. Transitioning from the postop meds, where they completely wipe you out, to a mix that makes you feel relatively normal seems to be a bit of a hit and mis affair but they get there eventually. I have got all the tubes and drips out of body which makes things far easier and I like being independent. I was allowed to go on to a light diet yesterday (5 day fast) and started with some delicious eel sushi that Kat brought in. The hospital food is pretty bad. Meet Dr B again yesterday, my sarcoma surgeon and he is very happy with progress. He has sent the extracted material away for pathology testing in Australia and we will get report back in a couple of weeks.
So thing to remember even though you go though some very dark, uncomfortable and painful times is that they are usually short and you get through it quickly; communicating early with your care team helps alot.
So bottom line is I am doing well here and expecting a good day.
Again loving the blog comments, emails and txts, I read them all but don't always have time or energy to respond.
Kind regards Gary .

Sent from my Nokia phone

Day 4

Gary had a good nights sleep(so did i).things slowly kicking back into gear.amazing how quickly one adjusts to new environments.burwood is fantastic,gary is getting the best care .everyone likes working here and it has great vibes.great staff from orderlies who are super helpful and friendly,hospital aides who do whatever is needed with a smile and fantastic and competent nurses and drs.we are safe and cared for. I am in the nurses home,it is quiet. We r missing the kids,but gd to have time to focus on gary recovery Good to have some space. thanks for all the support.kat
Sent from my Nokia phone

Day by day

Been napping most of the day and its been reasonably good day, had a bad start today and sick and very weak. They have taken me off food at present due to stomach and nausea issues. Finding it easier to shift around and get comfortable in bed and been out on a walking frame a few times. Taking it day by day and its getting better, enjoying all the blog comments, emails and txts. Ciao and off to sleep. Gaz

Sent from my Nokia phone

metal man

hi - Dev here,

I caught up with Tai and Kat this afternoon. They're both doing amazingly well. We chatted for a bit then to my utter surprise Tai asked me to push over his walking frame ! Sure enough, he got to the side of his bed, pulled himself up and off he went. He wouldn't have made the finals in Delhi, but it was only 48 hours after a major 7 hour operation !.

He asked me to put up the post op xRays - I think that you'll agree that it's bizarre... in a very good way.

I'll leave it to Gaz to tell the full story, but each image above is half of the wee mans back - so where we had thought they would put in support for the bottom 5 vertebrae, it looks like they did a fair bit more than that.  I found this (mainly coz I wanted to ensure that I spelt vertebrae correctly !) ....

In the human spine (or vertebral column) there are seven cervical vertebrae (in the neck), twelve thoracic vertebrae (to which the ribs are attached), and five lumbar vertebrae (in the lower back). In addition, five fused vertebrae form the sacrum, and four the coccyx

Tai loves the emails and txts (kinda keen on the meds also) - so keep throwing them through.

Gary has been up on walking frame walking very short distances, but doing so well.pain meDs changed today so we are hoping for a better night,it was a bit rough last night.hes napping well today.its been quite a peaceful day.lovely temperature.we had the doors open..fresh air and birds singing. There is a plover near us with three chicks. Kat
Sent from my Nokia phone

I didn't meet a talking rabbit but I think I found wonderland.

Modern pain management is pretty amazing,just push the button, saying that its been a pretty uncomfortable day. Far more metalwork and fusing than expected. Surgery a success and confident that I had the dream team in the operating theater yesterday, apparantly they want me on my feet tomorrow which will be a major challenge but willl take it a day at a time. G
Sent from my Nokia phone

Day 1

Gary doing well.has been 4 xray today not fun. With the amount of metal now in his back new name is iron man .rod and screws from t6 to sacral area. Kat. gary says day very slow

Sent from my Nokia phone

In recovery

Gary out of surgery and in recovery.surgeon pleased all gone according 2 plan.still waiting to see him.he went in at 9 and out at around 4.the orderlies keep telling me he had the best surgeons in the place.very friendly staff,thanks for all wishes and love keeping me going and gaz will love to c them in a few days.kat

Sent from my Nokia phone

Good to go 8.3o

Sent from my Nokia phone

You've got my back covered!

I am very blessed to have a tremendous supporters team, including by family, wider Whanau, my medical team, my church, my friends, fellow cancer survivors, my colleagues at Enabling and wider business community. Based on the number of hits this site is getting (5,000+) there are probably a few I don't even know yet. I like people and I feel that I have the ultimate supporters team praying, wishing and working for a positive outcome and also providing our family with practical support. Thanks!

Kat and I will be updating this site on progress most days. I Love getting your ideas, comments, well wishes and bad jokes. So keep posting comments including to the old posts. You learn most things in life from others and keen to have your input.

I am going into this operation with complete confidence. Timing is great and I am feeling good in my body, mind and soul to deal with the challenges that the op and recuperation will bring and why shouldn't I; because all you guys have my back covered.

Who needs a Lamina anyway? Details on Surgery 2

Its funny when you are not aware of something important in your life until you need to do without it. Lamina are important parts of your vertebra in your spine (See graphic) and I am coming to terms with having  5 less of them in my body. The surgery this week involves removal of my right back muscle, plus the back right side of my lower spine, approx 15 cms. To strengthen it spine the vertebra will be fused and a metal rod fixed to the back of my spine.

The muscle excision (paravetebral muscles) is significant although I have been less concerned about this. The last operation detrimental impacted this muscle group significantly and I have found recovery to be swift and that the body just copes and reconfigures itself.    

The work on the spine has some greater risks and longer term impacts on recovery and mobility which has taken a bit more to get my mind around. 

The Surgery is this Thursday (21 Oct) at Burwood hospital and will take approx 5-6 hours. I have a crash hot surgery team and absolute confidence in their abilities.

Why do it? This is all in a good cause and will significantly increase my chance of long term survival from this cancer. I think at times with medical treatments you just need to grin and bear it.  Become informed, know the risks, but also heed your medical specialists advise. If in doubt ask your medical guru these  questions: If this was your child would you recommend this option? Is there a better option? What's the next best option and why is it inferior?

So in balance trading a few Lamina for an improved prognosis is a good deal and a no brainer decision. Am I confident in my medical & support team? Yes. Are the risks acceptable? Yes. Will I cope with recuperation and mobility issues? Yes. Will we achieve a positive outcome? Yes.  So lets go for it! 



R&R is good for Mind, Body and Soul, Le Lagoto Savaii Samoa



Sarcoma makes it to Greys Anatomy

Watch this sneak preview of next seasons preview here:
http://www.youtube.com/watch?v=Go74oZeZiIg
or here:
http://sarcomaalliance.blogspot.com/2010/10/sarcoma-on-greys-anatomy.html

Reposted from Sarcoma Alliance Blog site.

Alofa Samoa

Just back from a wonderful family holiday in Savaii Samoa, this is such a wonderful place and I highly recommend. It is the classic hot and beautiful tropical island and you are forced to change your pace to half speed and island time. Mostly spent our time resting, reading and swimming. We stayed at a very nice small resort called Le Lagoto, which sits on a lovely beach and lagoon.

Highlights of trip: Quality time with the family; lovely local people, swimming with turtles, reading two books, tropical fruit, sunsets and stars, swimming in idyllic conditions all the time. Achieving complete rest.

Prior to trip home had become very busy and this break was perfectly timed to get a serious dose of R&R before surgery later this week. I am feeing fit and rested, plus family are in a very connected space.

Talofa lava

Thanks for all the comments, currently at Airport and flying out to a technology free tropical island. So offline for a couple of weeks. G

NED on track. 1 test down. 1 further test and 1 operation to go

Surgeon visit went very well yesterday, All the tests for metastisis (secondary spread) were negative, plus impact and healing from previous surgery and RT is going great. The before and after MRI images are amazing and reassuring. Went through surgery planning a little not much new info, confirmed that they will need to use a supporting rod and fuse the lower spine (approx 15 cm). This will have some long term mobility issues but  I am not concerned about it and will come to terms with it fine. I like Doctor B, he is on our side and working hard for a happy outcome. My surgeon did also say that the stiffning of the spine will result in "my golf handicap going out", so to my golfing friends, bring on the strokes! 

Hedge Pruning Peninsula Style

Tree was a 12 metre macrocarpa and we had a lot of fun cutting it down. We subsequently have split the tree and used for a terraced garden. David a new friend and neighbour did the felling and I was just technical advisor "don't hit the chicken coup or Kats garden" and the male model for this Timberworkers calendar shoot.
Its great having lots of energy although I need to slow down and chill out a bit, Samoa is going to be great for that. I will never finish the things I want to do so just need to stop. Flying out today, playing golf and catching up with some Christchurch mates this afternoon and in to see surgeon tomorrow for planning and results of tests. Dev has drawn the short straw and coming along as a supporter. Family coming through and off to the tropics Tuesday.

Dealing with Health Information on the Internet

So you (or a friend of family member) come back from the doctor and have a new previously unknown condition to deal with  and you head to Google to lean more.

Health information on the Internet can be overwhelming and if your not careful very misleading. Initial searches bring up shallow commercial, wellness or media driven sites.  Wikipedia is good for definitions and some times has some good references, but don't stop there. The good information is far harder to find. Look for support organisations, government and not for profits, where the information is generally far more balanced and detailed. These sites often have links and you need to keep following the trail.

Get copies of all medical communication and goggle and gain information on the technical terms and prognosis. There is a massive amount of technical medical information and databases such as this PUBMED; At times you wish that you concentrated more when studying science at school, but generally you get the gist. I recently found a best practice guide to treating sarcomas, an incredible and useful document to have.  Medical professionals, if you are ask, are good at explaining the gobbledygook, but time is often limited and you are better to go in to consultation with a least a reasonable understanding of the subject matter.

To get a patient perceptive I have found blogs to be wonderful, but again be careful. People who have a minor condition or potential major condition but get through it quickly don't generally blog about it.  So blogs don't give good balance and are over represented by patients with a poorer than average prognosis. Blogs also have links to useful and interesting sites, such as mine here.

Patient support forums are a great interactive way to get and share information with others with your condition. You learn a lot on coping and wellness from other patients and you learn from their eyes and experience, not the doctors. Also check out YouTube, iTunes University and podcasts, they often have easy to access and digest information. .

As previously blogged the medical industry is a bit dysfunctional, they are great at drugging and cutting but not necessarily good at wellness.  You are referred from specialist to specialist and it is critical that you are informed and take charge of your treatment. If you decide to do your own health research on the Internet I suggest that you do it thoroughly or not at all. Don't charge out too early i.e. "I have a lump what could it be?"  wait to you have a medical diagnosis. Also focus your research on what is know and the current facts of your situation and not on what might happen.

The advent of Health Information to the internet is fantastic. You are able to become fully informed and take a far greater role in your treatment.  It will drive greater accountability and learning into the medical sector and is transforming how we interact with health professionals. Power to the Patient!

NED is coming to Christmas

Generally people get through primary cancer fine, it's when it starts travelling and you start developing metastasis (mets) or secondary cancer in other parts of your body when all the major problems begin. Today I have no mets detected and my cancer is graded stage 3 (out of 4). If I get mets I get upgraded to 4, one upgrade I don't want.. The medical team have indicated that due to the nature of my tumour that there is a good possibility that mets will develop and potentially that these are already in place but they are so small they can't detect them yet. Next week I get my first CT scan (every 3 months) to see if any secondary mets or tumours have developed.

Also following Radiotherapy (RT) and the coming surgery the pathology team start playing a role and from the material excised they will give us a clearer picture of progress. From their work they may find: 

1. no cancer cells detected (last surgery cut it all out)

2. dead cancer cells (RT was very effective)

3. some live cancer cells (RT was less effective)

1 and 2 results are great, 3 not so. With result 3 "where there is smoke there is fire" i.e. although the test is on excised material it is likely that at a cellular level there is still cancer in body and it is resistant to the treatments todate.

So who the hell is NED?
NED is a cancer survivors term for No Evidence of Disease. So my short term goal is for the CT scan to be negative and to get a 1 or 2 score on the pathology report. If so at Christmas, although I will still be hobbling about a bit post surgery, I will be wearing a large NED badge and smile. Although I need to be in the NED zone for a couple of years before my prognosis starts improving, getting into the NED club will be a major milestone.

Kat: My #1 Supporter

Why I spat in a jar and sent it to America

I am participating in a DNA study that has been initiated by 23andMe, a commercial genetics company that provides health and ancestry information based on one's genome. One of the founders of the firm has been diagnosed with sarcoma and is interested in stimulating further research into all types of sarcoma.

If you choose to participate, you will be asked to submit a saliva sample from which your DNA will be extracted. Your DNA will be made available to researchers interested in sarcoma. In return, you will recieve detailed information about what your genome says about your potential health risks, traits, and your ancestry. Its kind of fun, but you may learn things that they may not have wanted to know.

It is an opportunity to contribute to the scientific community's knowledge about this rare disease, and I'm willing to do that in the hope that someday someone will learn enough about sarcoma to develop effective treatments for the hardest to treat forms of the disease.
 
So if you have a sarcoma and want to register go to https://www.23andme.com/sarcoma/

You don't need cancer to enjoy this therapy http://www.samoa.travel/sightseeing/a9/Savai

Next Operation Scheduled

The next operational is scheduled for 21 October 2010 at Burwood hospital, checking in on the 20th. Expected to be in hospital for 7 to 10 days. Burwood is a specialist hospital in Christchurch with a good reputation. My hospital room mates are more likely to be Rugby and Car accident patients than the run of the mill patient in public. I expect post op physio and care will be good. I am doing some MRI imaging work next week and have another surgery planning meeting with Sarcoma specialist in a couple of weeks.

Back is still healing from RT, these things always seem to take longer than you expect. Fatigue is gone and energy levels have returned which is fantastic.

Looking forward to our lying in hammock and floating therapy coming up in Savai'i, Samoa.

T67 Milestone Radiotherapy Complete

I finished radiotherapy yesterday and very happy to be through that. I feel perkier already and it is nice not needing to make that daily trip into hospital. The impact of treatment may increase and hang around for a couple of weeks but I expect to bounce back quicker than that. This would have been a lot harder without the fantastic RT team at Dunedin Oncology, they are the real deal. Professional and very competent, yet warm (hearts not hands) & funny. They are wonderful people providing a great service. Thanks Guys!

Planning to lay pretty low in next couple of weeks but progressively increase exercise and activity. I would like to be pretty fit before operation in October. Dog walk around Portobello with Kat is todays exercise regime.

My grass is growing and it is spring

Thanks to the new lawn supporters... Graham, Calvin, Grant and Zach 

5 weeks of Radiotheraphy and Driving Cars doesn't mix

CRASH... off to a different doctor tomorrow.

Inspiring Video Clips on Health and Wellbeing - Worth watching!

Dr Dean Ornish outlines simple, low-tech and low-cost ways to take advantage of the body’s natural desire to heal.
http://www.mindfood.com/at-healing-and-other-natural-wonders.seo

Willian Li.-  Can we eat to starve cancer?
http://blog.ted.com/2010/05/17/can_we_eat_to_s/

Dr Gerald Lewis (NZ) will share his over 40 years experience in how to prevent and treat diseases, using the best of both conventional and complementary medicine.
Video intro to site:
http://www.youtube.com/watch?v=by0VzhclbMQ&feature=player_embedded
His website:
http://sites.google.com/site/drgeraldlewis/home
Should we take Dietary Supplements?
http://www.youtube.com/watch?v=Uaqvr4N6jCw

Benefits of Laughter Yoga with John Cleese (Odd Spot)
http://www.youtube.com/watch?v=yXEfjVnYkqM

"Just Keep Swimming"

Some good advice received from a fellow cancer conquerer;

Click link below to see video and some simple yet good advice on life from Dory
http://www.youtube.com/watch?v=CmyUkm2qlhA

Status T50 - Radio's a B@$%&! - 17 down, 8 to go

I have decided that I don't like RT, it's a progressively debilitating regime.
I do like that it is killing the cancer and enjoying the fun and professional team at the RT department. But it comes with a cost of sneaky side effects and it steals some of your joule de vivre. Generally keeping positive and active although have had to moderate back somewhat. Good food, lots of sleep/ rest and fresh air seems to be the best strategies to get through. 17 treatments down and only 8 to go. The impact progressively builds and it's meant to be at it's best/ worst 2 weeks following treatment. Although 1 week and a bit to go until the last daily dose and I think physiologically this will be a good milestone to get through.
Dates for next stage getting locked in some more imaging/ test late sept, surgery planning in Christchurch early October. surgery and recovery in Christchurch from mid to late October.
Great to get all your supporting emails and comments on the blog.
Cheers
G

THE BOYS

feels like winter and its heading for spring

I haven't had the energy to write in the last week or so. Felt crook all last week and it seems to be a slow drift into this week.I thought I was being overly empathetic with Gary but as Zac has been home all week with the same symptoms I think it was 'the nasty bug'. (when is a bug ever not) There is wattle flowering in my yard and its yellowness is everywhere. I am sick with raging hay fever..urghh. Sometimes I just need to grizzle.
Gary is plodding along with his Radio therapy..it is slow and painful process. He is sick and sore and tired.Because he has scar tissue from the previous surgery his back is reddening up creating a few problems. The staff at the radiotherapy department are awesome and onto it. Gary is feeling well cared for.
Our section is looking amazing due to Dads and Gary's efforts -  building walls and constructing. I am impressed at how organized and capable they both are..lol. We are about to start as much planting as we can afford..there is a lot of ground to fill in with trees..It is all taking shape now though and for the first time I have been outside and gardened properly and planted..so satisfying.
Our lawn is sown.Gary and Graham (his brother) spent quality time with the Holy Roller...laying down bird seed for our feathered friends. Zac counted 21 sparrows , two yellow hammers and "too many other birds to count mum I will make you a cup of tea instead'
We are hoping that enough seed was laid to feed birds as well as grow.
We read that it was best to sow some for the birds some for the dirt and some for chance..so it should be fine.

Therapy at the bottom of the garden - Pudding Island (Te Pao Titere Moana)

7 ½ Things to do Before you Die

Life is a terminal condition and you are likely to have multiple serious health issues in your lifetime. Here is a list of things you should do beforehand:

1.                   Seize the Day (Carpe Diem) – Your hospital check-in maybe tomorrow, so do it today. Make a bucket list of priorities and things that are important in your life and focus on them now.

2.                   Choose Wellness – Buy yourself sometime; most health issues are avoidable or can be postponed. See earlier posts on Hauora Wellness and Cancer is a preventable disease. Whether it’s driving your car too fast, smoking, bad diet, poor exercise, etc.; make a decision: choose wellness and extend your quality life.   

3.                   Find your Faith and Identity – If you rely on things, activities, wealth, status or image to define who you are, you will be doing it hard on the home straight or if you no longer have these things. Seek and explore your faith, beliefs and values and complete this question: I am...?  Then reassess your priorities in action 1 above.

4.                   Enjoy the Small Things (Joie de Vivre) – Develop ebullience for life and stop to smell the roses.

5.                   Become Financially Secure – For most, with sickness, this means crisis or income protection insurance. The last thing you want to do if you are sick is stress about money. Blokes if your identity (3 above) is all about providing for the family, how do you think you will feel when you can't? Remember to insure all family members for additional health costs and time off work to support a non income generating member.

6.                   Get a Partner - and invest in a relationship that believes in "for richer and for poorer, in sickness and in health". Remember it’s reciprocal.

7.                   Be the Best that YOU can Be – Fully extend and develop your capabilities and be replete in your achievements.

Live life now – If every second day is a bad day, you are halving your ‘life’ expectancy.   Be brave make changes that improve your quality of life, be careful when changing external factors because maybe the thing that needs to be changed most is YOU.

I would love your feedback on this, I’m sure I am missing a couple of items; maybe jointly we can get to 10. J  

Todays Therapy Highly Recommended

Been feeling a bit icky and fatigued with RT, but have discovered a new post RT treatment to overcome the side effects and it worked a threat.  

Out with Ian P. today at Otakou Golf course, my golf was terrible but the experience sensational. Back bit dodgy but OK, I'm on a mission to keep active. Glorious Peninsula weather today.

Last lecture before his death - Simon posted as a comment but it's so good I have reposted on main page

Not funny, Inspirational, watch

http://www.youtube.com/watch?v=R9ya9BXClRw&feature=related

Posted by Simon to Conquering Synovial Sarcoma at August 11, 2010 6:36 AM

The Story of Cosmetics : Did you realize how many toxins your putting in your body everyday?

Check out this video on YouTube:

http://www.youtube.com/watch?v=pfq000AF1i8&feature=youtube_gdata

Sent from my iPad

SAMOA

We would like to go to Samoa before Gary's next operation..this isn't very far away:-) Somewhere warm and salty where we can float.Does any one have any good suggestions about where to stay.We havnt been before..We are planning on a week and inexpensive is good..
We need suggestions in the next few days..thanks KAT

Radiation update - Kat

Gary is off to Soccer this morning with Zac.Last few games of the season.Then its paintballing for zac and his mates out at Abbotsford..Zac turned 14 this week.A long stretch of a boy.

Gary has been pretty tired with the start of Radio therapy,napping alot. Completely zonked the first day.He has a bit of inflammation in his lower back but we are hopeful that this is just beginning symptoms.We were told that he would probably get a good burn from the radiation as he has a good amount of scar tissue that is susceptible to this.

It was a gorgeous sunny day yesterday and after napping Gaz charged out and raked the lawn out front ready for sowing next weekend.Graham, brother & green-keeper extraordinare -is coming down from Timaru to sow the lawn and Calvin has sourced the seed. Yaahh thanks for that! We have inherited the most amazing antique roller to smooth out the bumps.It is rather sexy piece of metal. I shall post some photos' with Gaz looking manly beside it. I predict with all this good stuff being directed at the lawn it will be somewhat special

Have a great day everybody KAT

Status T38 Days - 4 down 21 to go

4 sessions down at the RT department only 21 to go. Scheduling sessions early morning so I can get on and do some stuff in day. Clinicians there very competent and friendly and it seems to be very efficient and well run department. Also found most cancer patients are very friendly; everyone sitting around in their hospital issued gowns (all ages, stages and sizes), all keen for a natter. Music in radiation suites is terrible so have playlist under construction. Remember to add your best joke in the comments of my last post. Lovely day on Peninsula and Zacs birthday.

Laughter is the Best Medicine

Humor is infectious. The sound of roaring laughter is far more contagious than any cough, sniffle, or sneeze. Laughter is strong medicine for mind and body, it is a powerful antidote to stress, pain, and conflict. Nothing works faster or more dependably to bring your mind and body back into balance than a good laugh. Laughter; relaxes the whole body, boosts the immune system, decreases stress, triggers the release of endorphins and protects the heart. Read more here.  

So supporters please post your best joke or link to something funny on internet in comments area below. :-)  

Status T+33 days - Start Radiotherapy today

3 August 2010 - Start Radiotherapy today, 5 week daily cycle planned.

About Radiotheraphy:Radiotherapy uses X-rays to treat cancer. A beam of radiation is targeted at the part of your body where the cancer has been found. The aim of the treatment is to destroy cancer cells with minimal damage to the surrounding healthy tissue. Radiotherapy works by destroying the DNA inside cancer cells, preventing them from reproducing and so shrinking cancerous tumours. Radiotherapy can either damage DNA directly or create charged particles (free radicals) within the cells that can in turn damage the DNA. Cancer cells whose DNA is damaged beyond repair stop dividing or die. When the damaged cells die, they are broken down and eliminated by the body’s natural processes.
Normal cells will also be affected but they are better able to repair themselves, this leads to side effects although not expected to be major.

So if you are about the hospital area early mornings in the next 5 weeks I might be good for a coffee and catch-up at "the Fix"

How is your "Hauora" today?

Hauora is a Maori health philosophy which takes a far broader interpretation on someone’s health than western culture.  As well as taking a wider perspective on someone’s physical, mental & emotional wellbeing it also takes into account the social components of your life (family, friends and relationships) and your spirituality wellbeing. 

Hauora is taught in New Zealand schools as the "new" health curriculum and has gained some international acclaim. For more information on Haoua checkout here for overview and here for detail .

Hauora is often represented as a Whare (house) with the walls representing the four elements (physical, mental, social, and spiritual). The concept being that if one of the walls is not strong it will impact on the stability of your Whare. Conversely if three of the walls are strong, it will put you in good stead as you rebuild a damaged wall.

When you start to have an upfront and personal emersion in the hospital system you realise that it is a sickness industry not a wellness industry. They are generally fantastic at diagnosing, drugging, operating and treating certain conditions, but are lousy at putting a structure in place to assist you to restore and maintain your overall health, wellness and abilities.  Hauora provides such a structure, and if used proactively may assist you in not getting sick in the first place.

So how is your Hauora today?

The doctor said to get mobile and fit for next series of treatments so I choose power tools and earthmoving equipment in my exercise regime.

Status T=0 DDAY "You have cancer"

1 July 10 : What a terrible job being a messenger with bad lab results. The consultant we were meeting was unexpected away and the job was left to a young registrar. It felt like a B grade movie, left waiting in a hospital waiting room and then in came the ashen faced young doctor and pitches the key line "it's bad news you have cancer, its high grade and very rare its called Synovial Sarcoma".  He did OK but was ill prepared and lacked knowledge for the dozens of question we had. Although bad news it was good to at least get some definitive information on what we were fighting.
I have probably had this cancer for a couple of years, just today I have a diagnosis and a name for it. What has changed, it's seems everything.

Status T-10 Its a Keeper - Operation 1 Success

Initially the operation was meant to be a biopsy i.e. the fine needle biopsys were not providing sufficient material to allow them to diagnose tumor. We overheard our teenage son explained the planned operation as: "The Alien Baby is getting his leg cut off today".

Just prior to operation the surgeon advised that when he goes in and if its easy for him to shell the tumor out, that he was just going to go for it. This seemed a great idea and I was very keen for it to be gone.

The operation and recovery went very smoothly and discharged in a couple of days.

The tumor and some surrounding muscle tissue were removed. Pain was not an issue, they just pump you up, some discomfort and initial shaky in legs when first getting mobile.

The tumor was a keeper, 13 cm by 9 cm. Alas the doctors were right, it was not a Alien and the urban myth and commercial opportunity destroyed. It was a soft tissue tumor, type still unknown and posted to Australia for testing.

Its incredible how quickly you bounce back the human body is miraculous at its ability to restore, repair and recalibrate.

Status T-29 : Gaining Momentum

You often hear that getting into the health system is difficult, but once you get in things move fast if you have a serious condition and that was my experience. During this period I had a plethora of tests as they tried to diagnose the condition. I felt a little like being a patient on "House", with lots of smart doctors and technicians showing extra interest and jabbing me with things and questions. I loved the health technology in use and obviously it has a massive positive impact on diagnosis, treatment and outcomes. The MRI scan (with tracer) was the defining test and provided some amazing images of the tumor and challenge ahead. A highlight I had during process was doing a onscreen "fly through" my own brain, heart (and the tumor), very cool.

Good news during this period was that there were no signs of secondary's in other locations, so a lot of tests were negative. The FNA Biopsies were ineffective and they weren't able to diagnose tumor.

This all ultimately lead to a call one Friday morning T-13 (16 days later) from Orthopedic Surgeon, "there is a large tumor and we operate Monday"

Status T-132 days - Email to Kat

From: "Gary "

Date: 19 February 2010 10:52:31 AM

To: "Kat"
Subject: Osteopath

Who would you recommend for my sore back?

G xx

[Initial symptoms very similar to a standard sore back . Initially went down the Physio, Osteopath, GP path. Treatment made situation worst. Initial logic was that muscle was in spasm. Aggravated playing backyard cricket in Otematata, which lead to second GP Doctor visit who detected a lump in the muscle and referral and appointment with a Orth Surgeon specialist at T-29 days i.e. 103 days later]

Observation 1. Conquer Cancer by not getting it in the first place

Cancer is a preventable disease, or at least partially, through minor changes in lifestyle, diet and avoiding risk factors. Become more informed by reading this insightful Thomas Goestz article

Extract : Cancer is perhaps the most frightening of all diseases we face. And the thing is, it's very often entirely preventable. If we simply made some different decisions, earlier, many cancers would never happen.That sounds like an audacious statement. Cancer after all, comes "out of the blue" -- we report that it happened "suddenly," that it came "without warning." It is the proverbial bolt of lightning that changes our lives all in one strike. How could we prevent lightning? But in fact, a newly emerging consensus holds that 90 percent of cancers are rooted in environmental or behavioral causes].

Friends, family, colleagues, anonymous web readers with unhealthy habits and lifestyle ... wakey wakey... Why are you risking it? When you experience the pain and suffering of cancer down the line you will regret your early arrogance and ignorance. Go to a local hospice or an oncologist department and see the pain and impact that cancer has.

My oncologist said a possible cause of my cancer was radiation and the most likely source of the radiation was long distance flights. Mmm no international holidays or business trips, tough decision but avoidable. Very low risk and I was unlucky, but suggested to sit in centre rows and let radiation filter through other passengers first. Where do Pilots sit when they are travelling back with the passengers? A. In the center/ aisle rows away from the windows.

Get informed, know the risks, make better decisions.

What lifestyle changes should you make?