We have a plan – but there’s a catch!

So I know I may have generated a bit of excitement when I announced on facebook that we FINALLY have a plan to help aid in my recovery, however I really should tell you that it is a very full-on and intense plan. A plan that I don’t quite know how I will handle. I am not excited for it, I am not happy about it, but if I want to regain any sort of quality of life, I have to do it.

Lets fast forward back to mid to late last year. I went on an amazing vacation to Bali with my best friend, I was well and I was happy. I was working part-time and I was about to increase my hours because I still hadn’t been able to work full-time since my first diagnosis, however I was definitely feeling ready to work more.

I was working four 6-hour shifts a week, and on my days off I would spend some time in the gym rebuilding my strength and fitness. It was wonderful, it actually felt like I was finally getting back on my feet again after the first diagnosis knocked me for six for 18-months prior.

Generally, if bowel cancer is going to return, it usually does within the first two years. However, we are closely monitored for five years just in case. This means colonoscopies once a year, and CT scans every six months. So for the first two years, each scan that I had, sent me into a huge state of scanxiety!

As I had made it to the two and a half year mark since my first diagnosis with no spread or recurrence, I had become quite complacent. I continued with my regular scans, however the stress and anxiety had finally eased. It had definitely gotten easier for me, but it was then at that point, that life decided to throw me another curveball.

The CT scan showed a new mass, but this time it wasn’t in my bowel, it was in the pelvic and tailbone region. I was beyond devastated. I then had a PET scan, which ended up showing no active tumours, so my devastation turned into elation. It was such a whirlwind of emotions, but it was still so unsettling that two different scans produced two different results.

My surgeon was still concerned and organised a needle biopsy whilst under anaesthetic. The tissue from this new mass was sent off for testing and it was confirmed cancer. I had major 8-hour surgery on 29 November 2016 and was told to expect a 6 to 8 week recovery.

Now, almost seven months later, I am no where near recovered from that operation. In hindsight, I never would have gone through with the surgery had I known what it would do to me afterwards, but unfortunately there is no way of knowing how the body is going to react after such invasive surgery.

It is a stark contrast from where I was at pre-surgery, to where I am at post-surgery. I am 95% bed-bound, often only leaving the house to attend doctor’s appointments. If I am very lucky, I will be able to venture out for a short walk, or a picnic with close friends, all on very rare occasions. Whilst your life continues as normal, mine has completely stopped. My quality of life is unfortunately very poor right now, and I am so very tired of it, hence my complete and utter despair for some action. How anyone can expect someone to live this way, is beyond me.

So the plan… the extremely daunting plan is to start on some heavy duty antibiotics. As most of you may be aware, I was hospitalised over the Easter long weekend because I was dying of sepsis. I had to endure another operation, as well as have IV antibiotics and then two weeks of oral antibiotics. I thought I had finally kicked the infection to the curb, until just a few weeks ago when it started creeping back.

If you’re thinking I will just need another two week dose of oral antibiotics, you’re very very wrong. The doctors are looking at giving me IV antibiotics for 24 hours a day, 7 days a week, for anywhere between FOUR to EIGHT WEEKS! I guess the positive is that it can be done at home, I won’t need to be in hospital that whole time. However I will have to carry it around with me, as it will be in a bottle attached to a needle that gets inserted into my port. The same port that was used to administer chemo… I knew I didn’t get it removed for a reason, because it will certainly come in handy now!

A nurse will come to my home every single day to change the bottle. However it doesn’t stop there, once the IV course has finished, I would then be looking at taking oral antibiotics for 12-months… yes, TWELVE MONTHS. How my poor gut is going to handle that, I do not know. I honestly don’t even want to think about it right now.

If being attached to IV antibiotics 24/7 for four to eight weeks and then 12-months of oral antibiotics isn’t enough to send me into a rage, lets throw in the plan of hyperbaric chamber oxygen therapy! This is something I only know very little about, but I will learn more in the coming weeks. By going into a hyperbaric chamber, your body is given 100% oxygen, and oxygen helps with wound healing. Ongoing infection from sepsis, and radiation damage has resulted in poor wound healing post-surgery, so the idea is to get me into a hyperbaric chamber and help this tissue repair itself. But there is a catch…

There is only one hospital in South Australia that has hyperbaric chambers and they’re at the Royal Adelaide Hospital (RAH). For the oxygen therapy to work to its full potential, it takes a considerable amount of time. I could very well be looking at 200 hours of oxygen therapy, at two hours per session. So if you do your math, and base it on a five day week, I could be commuting back and forth to the RAH every single day, for FIVE MONTHS.

And it STILL doesn’t stop there. I have also been referred to a plastic surgeon to see if there is any way that he can help repair the damaged tissue. I see him next week so will have more of an idea what’s involved, but yep you guessed it, it will mean more surgery,

See… I wasn’t lying when I said it was full-on and intense. I had honestly reached the end of my coping ability well before Easter when shit hit the fan with sepsis, so I don’t really know how this will all pan out for me, but I am desperate and it is worth a try. I think I just have to write off yet another year as being an absolute shit show and hope that the following year can only get better.