I decided to proactively have a #2 haircut, before it all comes out

Short term pain for long term gain

I had an expectation and hope that maybe I will be one of the lucky ones and waltz through chemo with minimal side effects, but alas no. I have found chemo to be very tough and debilitating. The process of sitting in hospital for three days literally being pumped full with toxic chemicals was bearable. The following days were horrid and I think I ticked the box on most side effects. I didn't enjoy lossing abilities and sometimes control and felt I had regressed. I found it hard to stay positive and struggled to maintain that there was a good and therapeutic part with the treatment. In my chemo affected brain I just felt poisoned and pretty low, at one point I had a visual image of a soldier poisoned in the war planning to go AWOL. In fairness the positive does turn back on and for me within 2 or 3 days things started slowly getting better, drinking and eating started to get easier, the nausea reduced and eventually headaches stopped. After about 7 to 10 days from discharge I started feeling OK and apart from being very tired was relatively and progressively started to get better and better to your near normal. Chemo affects the brain and at times causing confusion and memory loss, now a couple of weeks on I can't actually remember what it was like and in many ways this makes it easier facing the next cycle.

Chemo affects everyone differently plus there are many different regimes, some less of more intensive. My experience will not be your experience.

This week we had a very positive meeting with our sarcoma specialist and he was very pleased with all the test results and my progress to date. My body is responding well to the treatment recommended and is eradicating the cancer from my body. So when in the thick of treatment and when not enjoying a specific procedure I need to think of the incremental value and that I am winning this war.

The regime begins

Another clear lung test today - "Who ha"

This is the 3rd clear lung test in 7 months and hopefully we have a permanent pattern occurring here. Originally due to the high risk of metastases spread they are testing the lungs every 3 months and will do so for a further 18 months. This test was part of the start of the chemo regime and has confirmend that we are still in NED / Mets free status and we are all very happy about that.

I did pre-admittance at hospital for chemo today which went fine and I will be in hospital for first cycle from Wednesday to Saturday this week. The drugs that I am on include Doxorubicin (Red Devil) and ifosfamide and more details about the drugs, treatment and side effects can be found here.

Mushrooms as big as your head on Otematata

Space Invaders coming soon

I'm hiding away in Otematata, a sunny, hot and restful location and not particularly enthusiastic about starting chemo next week. Although it is likely to be unpleasant I don't especially think it's Chemo I dislike, nor that I'll be in hospital for 3 days every 3rd week, I think thats its the accumulated impact of the procedures to date and that I'm over it. My first step on this cancer journey "Kat, who do I go see get this dodgy back fixed" started nearly a year ago and it's been an incredibly long, difficult and often painful process. Kids often use the term "your invading my space", well medical procedures invade your space big time! Cutting, scanning, drugging, injecting, excising my space. I often remind myself that it's all in a good cause or no short term pain no long term pain, although it's a bit hard to remain positive and get excited in the face of an upcoming invasive procedure.

But for now it's mid summer and I'm off to the lake tomorrow with a soft-chair and a good book.

Best / Gary

Sent from iPhone

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