10 Ways to Help a Friend With Cancer

I came across this blog and they make some amazing observations on cancer and life. It is well written and worth reading.

If it takes a village to raise a child, you might say it also takes one to care for the sick. Cancer is at once personal and communal. Disease lives in the sufferer’s body but the experience of illness is shared, often intimately, by our loved ones. And yet, caring for the sick can feel like writing a travelogue about a country you’ve never visited. You can’t know where you haven’t been.

“What can I do to help??..Click to read more”...

Thanks for the help and support!

Thanks for your comments and emails of support. It has been a funny old time dealing with this, the surgery was relatively easy to deal with, the head stuff far harder. The spinal surgery I had was pretty brutal so anything else seems pretty easy in comparison although you still need to get through it. I am a little at the end of my tether with medical procedures after having so many over the last couple of years, so when the doctor first rung to say "more surgery" I was less than enthusiastic. But you have no choice and you need to stump up and confront the procedure and get through. Mentally giving yourself a badge and remembering how well you coped with previous procedures helps you when you are confronting a new procedure.

Way back in the beginning I found this inspirational guy and made this post:
  
An SS Survivor to admire: 
Kirk Souder Read his story, not a treatment plan and prognosis I would like to follow but you have to admire his tenacity and courage.

Comparing notes I've nearly had as many procedures in my treatment plan, just now hoping to also come out with the 20 year positive outcome and attitude.

In answer to questions:

- Ribs were very sore post surgery although progressively gets better, 6 weeks post still tender although not limiting or requiring pain meds. Nurses said the pain from a thoracotomy surgery is up there with knee surgery and immediately post surgery it was pretty uncomfortable and good pain management is a necessity.

- Scar, yes another good one on the back although it healed well and quickly. If you look at pic closely I have a couple of freckles for eyes and it looks a bit like a demented happy face. Nurse referred to it as a shark bite scar.     

- Michelle,  I have no great desire to join the 1 lung camp but its comforting to know that we have a lot of spare lung capacity if the need arises. I follow your blog and its great to see you out and about and living life, its inspiring! Personally I haven't found any difference with breathing.

- Ola Flavi, Elodie, Lynda, Simon, Malcolm, Paul.... thanks for the words of encouragement. 

Pretty much I had recovered from the major surgery 3 weeks post, but if you seeking a guide for how long you need off work for thoracotomy I would suggest 4 weeks.  We had a very restful time at home over recovery, it was a very hot summer downunder and our large property was an oasis where we were able to hide away. I went back to work a couple of weeks ago and thats going well although inevitably it just takes awhile to pick the pace up and participate.  

Officially I am in remission, although high risk and another scan due in March or April. We are hoping that this is gone completely, but a short term goal of getting through 2012 with no further surgery or treatment would be pretty cool.

Ciao fo now

Gary

Spoonbills have been feeding in the harbour at the bottom of our garden

"Time heals what reason cannot" - Seneca

I think the Roman philosopher Seneca made a good point when he threw this idea out into the word. When first hearing news of a poor health prognosis the world as you know it is shattered; you are overwhelmed with grief and it is very difficult to come to terms with the information. Your mind goes in a spin thinking of all the possible scenarios and consequences; initially all bad.
Our wellbeing seems tied to the concept of certainty and a romantic ideal of what the future may bring. But time heals... it brings perspective and allows time to process and digest the new information and adjust to your "new normal".
I find information helps and reading article like these helpful ;
http://www.nytimes.com/1988/10/09/magazine/facing-your-own-mortality.html?pagewanted=all
http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Advancedcancer/Copingwithadvancedcancer.aspx
Coming to terms with this material helped me face my fears and return to getting on with living life.
No man is an island... often the most useful source of help is your family and close friends around you who are also coming to term with situation and uncertain future. Initially you may not be ready to talk and you will be selective with who you share with; but from experience I encourage that you open up; it is great for you and them.
The world is far from certain for any us and we can't control the future; but we can control our participation and happiness today. Follow the example of this guy:
http://www.youtube.com/watch?v=vwDVvKetRv4&feature=youtube_gdata_player

Ciao
Gary

Coming to terms with metastatic cancer

We've received confirmation that the spot in lung was a small single 6mm synovial sarcoma secondary tumour. This news was expected although still difficult to receive as there is always an outside hope that it is something else. I'm swinging  through the angry, sad and denial stages with this and still struggling to rationalise and come to terms with the development and poor prognosis. Although its very slow moving, this  disease  its unrelenting and very hard to eradicate.

In response to my post on the Synovial Sarcoma Survivors Forum "coming to terms with mets" a friend  provide this response which I though was worth reposting:

Hi Gary, there are several sub-groups in the mets club. 

One is made of people who after lung surgery never see the disease come back. I met a lady online who was still in remission 15 years after her lung surgery. Obviously, this group has very few members as far as I can tell but I am still hoping I can join it one day... 

Then there is the group of people who keep having recurrences but are able to go back into remission for a while every time. An example is me or Gina who was diagnosed in 1991, had 7 lung surgeries, was 5 1/2 years stable with yondelis and posted in July this year on the Sarcoma Alliance website (that's 20 years fighting with this disease!).

Then there is a group of people who get a "second chance" in that they are told nothing can be done, surgery is not possible and their prognosis is death within a few months but they get into a trial or find a bold surgeon and somehow go back into remission and improve significantly their prognosis. One of this patient is Hema who had some success with the NIH trial, went from 17 mets to 3 (the last 3 were removed surgically). 

Then there is a group of people who can't get into remission but are eligible for trials and are able to keep stable for a while, sometimes several years like in Gina's case. In the meantime there is always the hope that some miraculous treatment will come out. 

And finally there is the group that is not even eligible for trials and is only eligible for hospice :-( I am hoping to never join that group. I am not sure I can face death in such a direct way... Elodie

The few positives that I have at play here, is that there was only one small secondary tumour. This has been slow to grow and generally you don't get one you get many secondaries. It was successfully removed with clear margins and it is possible to get a curable outcome from this surgery and for it now to go into longterm remission. The recovery from surgery has gone well and I will be physically fully healed in a couple of weeks. 

Until I hear different I claim membership to Elodie's Met Club 1, if another medical procedure is required in the future I'll confront that when the time arises. I don't think you should bury your head in the sand with a poor prognosis, although it seems pointless getting ahead and over-analysing what may occur. For all of us there is uncertainty in the future and I guess the best option is just get on and enjoy life. 

 Gary 

Day 2 - Ouch

Ouch that was sore, I certainly don't recommend operations that involve going through the rib cage and rib spreaders.

Other than some pain issues overnight and this morn, the op and recovery has gone very smoothly. They have done a thoracotomy and a wedge resection on a suspicious spot which is now away for analysis. Unfortunately it wasn't a pea but a clearly defined fleshy hard lump approx 1cm in size. During the process they also had a good look around right lung and couldn't find anything else out or order. Good news issue was detected early, just 1 spot and they taking an aggressive curable approach taking large margin with objective to curing this completely. There is an outside hope that this is unrelated to the Synovial Sarcoma.

Another 4 days in hospital and I should be out for Christmas. Thanks for all the prayers, txts, emails and comments in support. Although I facing this personally I feel really well supported and all you guys have my back covered.

Thanks

Gary

Long Day

Gaz out of Surgery. He got taken in at 4.30 and out near 8. Spent a long time in recovery to get his respirations up at at a good level. Back in Ward at 10pm and having a cup of tea which he is thoroughly enjoying. He is looking forward to some sleep..Kat

What a difference a spot makes

What difference a spot makes

What difference a spot makes

Following a routine scan my oncologist has reported a suspicious spot on my lung and the need for a priority surgery. I'm currently lying in my hospital bed an hour before surgery. The procedure involves a shark bite (smile) cut under my right arm and gaining access to lung through rib cage. Apparently its a bit painful. They use a fancy stapler to nip the lung and resect the suspicious spot for analysis. At the moment just focused on getting through the procedure and not thinking too far ahead.

Real gutted with this setback, things had been progressing so well and feeling great. They've got on to it quickly and hopefully it's a stitch in time or the spot is just a pimple or a pea and they are getting over excited over nothing.

Will keep you posted.

Gary Taiaroa
Ph: 021 824 276

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