On the Bus...weekend wrap

On the Bus...Weekend Wrap

On Tuesday it will be just 4 weeks since my life, and many of those around me, has taken a twist, turn or a new meaning.

I must say, sitting here on the lounge late afternoon Sunday, I have started to find this whole cancer thing quite a challenge...but not so much the cancer but the realization of the number of changes that it brings to you from the old normal.

Today will be a little random but I do want to cover off on some weird things, and some of the thoughts rather than just the predictable text book things.

Let me start by saying that I have taken the week to review my decisions, research the gaps where I felt I was unsure of detail, and to reflect on the fanatic first 3 weeks leading up to the commencement of treatment.

In trying to explain to my self how the first 3 weeks felt, I kept coming back to this feeling of "being on the bus."

When you first get into the investigations in the medical world, you have no idea where it is heading and in the early stages it really isn't a big deal. As things unfolded for me, what was happening is that I was feeling like I was racing around the medical circles sitting on a bus with my destination ticket and time, with no say or idea where the next stop was to be, or who would be there.

Then the bus stops, you get off, see the person at that stop, get given the next ticket and you are back on the bus, and heading to your next stop.

Clearly this is not reality, but it is the best way I can describe the feeling...every thing was just rolling out.

Well after 3 weeks of this, it was time to count to ten and reflect. I must say, I was very keen to get the Chemo and the Radiotherapy underway as the way I see this, the longer I took to start attacking back on the spread of the cancer, the more risk I would be at of not containing the spread.  The Doctors all say it is not critical to the few weeks, but no one really knows, and I had lost a few months as it was before discovering the problem. Once again, perception is my reality, I wanted to get the wheels in motion, and all the specialists I had spoken to were as one in the recommended treatment. Thank goodness, it is so much easier when there is consensus.

The many alternative treatments and the endless stories of cures and the passion and commitment to these treatments does take its toll. I must say, such convincing emails, brochures and phone calls certainly does your head in, but right or wrong, I am backing conventional Western Medicine for this little problem, and I am comfortable with that decision still. All the alternative stuff does serve to ensure you ask lots of questions and does provide reason to question the establishment practitioners. All credit to the specialists, my experience has been that most are aware of all these conflicting views and they have explained in a non patronizing way the reasons and the logic for the recommendations of their recommended treatments.

As mentioned previously, the fact my Oncologist referred me to a naturapath who was previously an Oncology Nurse was such a relief, as I know that there are many facets to health, and working all as one seamlessly to me was a serious bonus.

"On the Bus"...so before I knew it, my specialists were all locked in, Surgeon done, naturopath, hospitals, treatment, timing and the bus was just rolling on, I as very much a passenger being taken on the Cancer ride.

I had made the decision to get the treatment going and then revisit where I was at during the week in terms of if I was on the right bus, or if some of the bus stops were the ones I really wanted.

We (between Sylvia, Gen, Suz and I) had a series of specialist meetings again this week. This was the perfect opportunity to ask lots more questions and get down into a lot more detail about the treatments, side effects, expected outcomes, time lines and so on.

We drilled into things like Hospitals, and the pros and cons of various hospital options. We took time to find out the technique and method of the surgery. We asked about world best practice, and what were the differences the various techniques used, and why.

We discovered significant differences in views on certain aspects of the procedures, and equally as important, identified unanimous agreed process and procedure.

I had coffee with specialists unrelated and also related to the procedure and basically asked an amazing amount of questions to try and get my own picture of how this was all looking.

My previous surgery only January 2011 potentially had some significance too, and I chased down more information relating to that operation, just to be sure as many of the variables as possible were discovered. Perhaps this was all just a waste of time, but for me, I felt I needed to take some control back, and to check that the Bus I was on was the one I felt most comfortable to be on.

I remember so clearly being wheeled into surgery for my Diverticulitis  operation, I had done a similar yet simpler exercise at that time...and it paid off in terms of the confidence I felt as that bed was wheeled into the operating theatre.

I get that things can happen (shit does happen) no matter who or what decisions are made, I also know, " if it is to be it is up to me", and if I don't care about what happens to me, why should others.  So I think for my own self worth, it is important to take whatever reasonable steps that are available to optimism the Bus Ride that I am now on.

So, there will be some fine tuning of elements of my treatment, but over all, I am pleased to say we have awesome talented and world class medical expertise right here in Adelaide, and we have great depth to that high level expertise. Believe me, I have been digging, and I am so proud to live in such an awesome place where there are internationally recognized specialists just doing their thing. We don't always realize how special the person sitting next to you at the lights, or sitting next to you in the local Cafe really are, it has been an eye opener to me.

Engines running. The treatment bus left the station Monday, and lots of new experiences, none I would seriously choose, but then this was an entirely new world I had entered. The next few months are not about parties, they are about a fight, about killing off a foreign body in my body, and doing it comprehensively, decisively.

As I worked through this week with all my discussions, it has become clear that this next 3 months is not a  rehearsal, this is about nailing this cancer and doing it half hearted is no option. It is important every single cancer cell is sought out, and destroyed.

Cancer seems to bring out the best in people. The medical staff, with out exception, amazing human beings. The other guests of the hospitals and waiting rooms seem remarkably happy, smiley, and looking beyond the obvious pain, seemingly more appreciative of life than most well people. Maybe I am dreaming that, but that is the impression I have had after week one.

Chemo round one. After pretty much all day Monday in BH, after hours of drips and a big start up dose I was fitted with the pocket sized (like a small baby feeding bottle) Chemo pack. It was attached to my brand new PICC and was to become my intimate companion all week until removed on Friday late afternoon. This bottle is pressurized by a bladder and is fed via a thin tube into the PICC line, it simply drip feeds in constantly all week. By Friday late afternoon, the bottle was empty, it was time to have it removed.

The bottle went, as did the PICC line. They came out on Friday night ....thank you so much Tabaitha for allowing me to take this PICC out. As with so much if the way I feel at the moment, it is not so much the inconvenience, nor the pain, butrather the thought of it all. The mind has a big part to play in the way we feel, and I suspect that will only intensify as time goes on with my treatment.

I have had 2 days relief from Radiotherapy too over the weekend, that too has been really great.

I caught a bit of a cough on Thursday, and by Friday I was not sure where this was heading. As I have said earlier, my white cell count and ability to fight off disease when in treatment is severely impacted. So any sickness has to be treated with incredible respect. I have been using natural herbs as support and I must say, my poor body has no damn idea what the hell is going on.

I have backed off a bit, all these foreign chemicals, tablets and medicines are testing things pretty much. We had Simon and Cecelia our vineyard manager up for an early dinner last night, and I was so loaded with stuff I felt almost twitchy...really uncomfortable. The cough has been chesty, not ideal, and feeling like crap as a result.

Today there were some birthdays and I was tempted to stay in bed BUT there seems a trade off between keeping busy doing interesting things and rest. Sitting around feeling sick or getting up, having a shower and doing something....well we did Popeye's 60th and Karen Raffen's birthdays today. The big difference was NO ALCHOHOL and rather than staying all day, we just called in, and then headed back home to the warmth of inside before too late.

I must say, getting a balance is not easy as this is all pretty new for me. I am so not happy not being fit and active, but I am making a big effort to keep mobile.

Sylvia is hanging in there, it is entirely possible that I'll drive her nuts if I begin moping around, but we haven't had that issue yet.

So how do I feel tonight?

I feel like I have had a taste of vulnerability with this cold/cough, I have not enjoyed the reaction to all the chemicals and I have had a taste of feeling genuinely sick. Tonight I am OK.

The honey moon is over. The bus has left the station. Some of the bus stops may have to be moved but the journey is well underway.

Seemingly cancer stories everywhere, Ch7 News ran a story on new miracle treatment, now it REALLY means something...get on with it guys!!

Next stop, radiation treatment tomorrow morning, 8am!!

Sylvia has just had a quick look over this for any spectacular errors, and I can smell some amazing Chardonnay,  but can't drink it at the moment.

Quiet night, watching  Dancing with the Stars and maybe Downton Abbey,  I doubt I'll make it past Dancing with the Stars...

PS as you know, been looking with Gen for a new car, big mistake! I accidentally ran into a car I very much like...I am so overdue for a new car but it is very dangerous wandering around car showrooms. We will see.

PPS how were Port Adelaide yesterday!! Go Power!!