Wednesday, December 22, 2010

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.

Saturday, December 11, 2010

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

Thursday, December 9, 2010

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.

Monday, December 6, 2010

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.

Saturday, December 4, 2010

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

Wednesday, December 1, 2010

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