Complete Remission – The Long Version

I did have every intention to blog after getting back home yesterday but it turned out I couldn’t. I needed time to settle down and I felt writing at any point in time yesterday would be pointless as I would feel different by the end of the first paragraph.

Sarah took Helen and I to the clinic for our appointment with Prof Opat, our haematology consultant. We were really pleased Sarah was with us as she was there right from the beginning and played a huge part in making things happen and, of course, the care and support given in the months since. Having her there at the point where we would learn if the circle had closed or the round 1 fight had to carry on was so important for all of us.

We were the Profs last appointment of the session so while we ended up being delayed for the appointment, we had as much time with him as we needed.

At first it was a little confusing. The MRI specialists had made their interpretation of last Friday’s scan not knowing I’d had extensive radiotherapy. They’d observed regions in my brain which they felt consistent with a possible continuance of the disease. Coupled with my communications over the weekend due to my really bad headache on Saturday the Prof had been quite concerned. Behind the scenes there had been a lot of communications Tuesday morning resulting in a completely different conclusion. The images were entirely consistent with scarring from the radio therapy. Coupled with the fact that the scans taken after I was given the contrast agent (which lights up cancer cells) showed no areas lighting up, there was in fact no evidence of disease.

Knowing that we like full disclosure we got the whole story and in there somewhere the words complete remission were said. By now my mind and emotions were beginning to race and it was a bit of a struggle to stay focussed.

But there was still a lot to talk about. We discussed the last couple weeks and how I’ve been feeling. It’s all totally consistent with after effects of chemo and there’s nothing to worry about.

We spent a lot of time going through records. He wrote his final referral to David Linch and sent it to his PA there and then. Carmen, his PA, came in with a bunch of CDs containing thousands of images from my many scans along the way. Lot’s more. We even had a brief chat about our past journey on the boat.

Once we got to the end of this, which is so important for round 2 of this fight, I went back to basics. I asked the professor if I was in complete remission. He knows I like info so he talked about the standards for clinical trials requiring no evidence of anything to use the term complete remission. So I asked him if, based on the definition of “no evidence of disease”, I was in complete remission. He said yes. Helen and I looked at each other and I for one found it incredibly difficult to stand in front of the wall of emotion now piling up inside of me at an alarming rate.

We soon parted. We both gave the Prof our profound thanks and a hug. Helen went back out to where Sarah was waiting. I went to see Carmen to cover a few loose ends about who was doing what with the records transfer, particularly with the Peter Mac institute who handled my RT. After this I thanked her and gave her a hug. At this point I lost my battle with the building wall of emotion. I needed an extra couple of minutes to pull myself together before going out to Helen and Sarah. More hugs. I lost it again.

Ok, so what does one do when you’ve learned you’ve just won round 1 of the battle of (should I say “for”) ones life. There’s only one possible answer. We visited the street where the outdoor filming takes place for Neighbours. It was pretty meaningless for me but Helen used to watch the show many years ago and we’d meant to do this for a long time. I was disappointed not to see Kylie who of course would not be there. And not because I’m a fan. I was thinking more about Martin Clunes obsession with her in Men Behaving Badly. Some of you will know what I mean.

When I first thought of writing about this aspect of yesterday I thought of it more as a joke. Now, on reflection, I think it was so important to do something simply normal. Life has been far from it for so long that to do something representative of our new future so soon helped a lot. My mind at the time was still simply everywhere. Sometimes on a different plane. Sometimes awash with emotion. It’s still quite hard to really describe how I was feeling. There was some elation but not a lot. A huge amount of relief. If gratitude can describe an emotion I had tons of that. For how else can you feel when you’ve been given the gift of life. I’ve mentioned before who I’m grateful to so I won’t do so again. You all know who you are and I don’t want to dilute the message by going through it again.

But it did feel as if an emotional bomb, or perhaps a Tsunami, had gone off. I was pretty sure there would be emotion, regardless of the result given, but had no idea of the intensity.

I did miss out on the fact we stopped for lunch at a nearby photo art museum and perused the exhibits. The pics were nice but being on my emotional roller coaster I don’t think I really saw much of what I looked at. But again it was good because it was normal. We took a short walk outside the museum. Sarah took a great picture of Helen and I, taken within an hour of leaving the clinic.

On the way home from where Kylie doesn’t hang out for old time’s sake, we stopped off at the nearby Dan Murphy’s and bought a bottle of Champagne. We’d decided what we really wanted to do was stay home with Russ, Sarah, Jack and Ros, our family, who have carried us so far for so long. We drank the bubbly of course and a couple or three beers. My week long abstinence be damned.

In fact I was still on an emotional roller coaster which was failing frequently from all the personal messages we were receiving. I tried my best to answer every one and as many of the blog message one to one as I could. Sorry if I didn’t get to you.

Along this long road the messages of support from everyone has been a rock. Be it personal contact, calls, emails, e-chats, blog posts, communicated prayers, FB comments/likes. It’s all important. We have received so many messages of support from my family, blog and Facebook announcements it’s been profoundly emotional. I was particularly moved by having a Google+ chat with son Ben from work when I know he barely has a moment to scratch his bum. I thank you all. When we felt despair or were lost in the woods, your messages of support helped keep us moving even if we didn’t know where we were heading.

I’m truly sorry for not being available for Skype. I really wanted to. But behind the wall of a screen my emotions were running high with every message received. Without being able to make physical contact I was not ready for the intimacy of video.

My own lesson in all this is that most people, perhaps all, no matter how strong they appear need this communication to help them through the toughest times in their lives. The more personal the communication the better but it all works. I vow to do better for all the friends I know who are fighting tough battles.

So we’ve won round 1. All of us involved. We’ve looked fate in the eye and spat in it. We’ve achieved that magical, dreamed for stamp on the forehead “Complete Remission”.

But the facts are the facts. There is no evidence of disease. But one shipwrecked cancer cell left washed up in a corner of my body pulling in scraps of sustenance, struggling for it’s own existence as all life does, will not show in an MRI. But if one is there somewhere it and all it’s fissioned offspring will kill me if they can. So the next two years are critical. Close monitoring and the best possible medical response ready to roll is the best way to get through this next period. If nothing shows in two years we might just allow ourselves to use the expression “Cured”. The next milestone, I declare, is therefore Dec 31, 2014. I already have a strong idea of where I want to be.

Till then I will live my life as if I’m going to live forever but run my “insurance policy” as if I live on a street full of arsonists.

The good news is that this is now all pretty much set up bar some detail I must get on with.

This morning we woke to a new day. What a wonderful feeling.