Blue Hugs: 2013

Friday, 8 November 2013

The Miracle

Today marks the 1 year anniversary of the Think Positive for Shane.

You will all remember our difficult journey this time last year. Shane had sceptic shock resulting from complications of chemotherapy. It was such a surreal ordeal for us. Firstly, Shane had no awareness that something was happening, fortunately for him, he was already in hospital under the supervision of the best team of nurses around. The end result was a trip to Intensive Care.

That was a whole new world. We were very accustomed to the routines and expectations of the ward 5C. ICU was a completely new ball game. We had no idea what to expect, and what was to come.

For four days Shane battled extremely high temperatures (40+ degrees), heart rates constantly above 120bpm, blood pressure dropping to 70/40, a phenomenal amount of medications and NO Sleep! On the fourth day, he had an episode of psychotic behaviour causing him to be sedated.

This was such a difficult time. I remember the phone call on the day it happened, the mad rush to the hospital, the nurse telling me I cant go in, and the Doctor coming out to meet me in the company of the social worker. Its never good news when they're with a social worker. This was immediately followed by the phone call to Simon, Shane's dad. It nearly breaks my heart in two when I remember that call. I can only hope I will never in my life have to make such a call again.

8 Days we waited. Shane continued his internal battle, but no change.

ICU doctors told me no change was no good. Haematologists said no change will be made until those little neutrophil cells came back. This made things very confusing.

Meanwhile, our good friend Angy contacted me and asked if we were interested in holding a Positive Thinking event for Shane where everyone at a designated time would send their positive thoughts and prayers. A facebook page was started, and it took off rapidly. Messages of good will came from all around the world. People shared storeys and photos and love and so much positive energy. This page kept me strong.

On this particular day, I went into ICU with some questions prepared. At this stage we didn't know what caused Shane's psychosis, and each morning the Doctors would turn down his sedation to see how he would waken. Each day, no success. I had to ask about the risk of permanent brain damage. A combination of high temperatures and chemo straight to the cerebrospinal fluid could easily cause cellular damage, and we just weren't getting any results. It was getting to a stage where the person lying in the bed no longer seemed like Shane. He had lost all his hair and with a lack of communication or personality, its hard to remember that this person was really him at all.

We held the Think Positive for Shane event at 8pm. It was a Thursday. Simon, Nancy and myself were right beside him. We held our hands on his and closed our eyes. The feeling in the room was so electric. It really felt as though we were funnelling all the energy dedicated to Shane through us and into him.

Then he moved his hand to on top of ours.

Such as small gesture, but it was nothing short of a miracle.

When all seemed hopeless to me, such a remarkable situation arose. The very next day, despite still being sedated, Shane was awake!

He even winked at me.

I am so grateful to everyone who contributed to this moment. I believe that without this event, we may have had a very different result. The power stemming from the collective consciousness was astronomical, miraculous and unbelievable. It is truly amazing what we can achieve when we all work together.

As we return to the daily grind, it is important that we remember remarkable moments like these. That people need positive energy to thrive more than they need food or water.

So, remember to share the love!

Peace

Thursday, 10 October 2013

The Long Snake

Jinxed.

Not long ago I said to Mum "things are finally starting feel like they're returning to normal (ish)".

I should really know better than to say these sorts of things! I know better than to plan for the future, or to think that we are safe in our little bubble of happiness. But its really hard to live life without having dreams for the future. For a while there, I forgot all this, and just had a damn good time!

For the first time in four years, I had two weeks off work in which Shane behaved himself the WHOLE time! No emergency trips to Doctors, hospitals or physio's. We managed to tick something off our bucket list by going to Dreamworld for the first time together. It was just so wonderful for the both of us to spend time relaxing, and sorting out some stuff around the house. We went to Casuarina for a week and spent some time at the beach and on the bikes. By the end of our holiday we were both feeling refreshed and ready to face the world again with dreams and aspirations.

The following week, Dr Cam reduced Shane's Tacro down to 1mg morning and evening. Since then, we've been sliding down the long snake back to the starting position.

Newtons third law states that for every action, there is an equal and opposite reaction. With every change in medication, Shane has a reaction. It has taken us a while to figure this out (surprisingly) So far it has been some upper gut GVHD (Graft vs Host Disease) where the only symptoms is sudden fear of eating. Shane will sit down to eat his dinner, then suddenly push it away and say "I can't eat this". As you can imagine, its just a tad bit frustrating, and has left him hungry, or living on simple foods like 2min noodles. Not very good nutrition-wise. A couple of days of steroids usually sorts it out and he's as good as new.

This time however, the GVHD has crept back into his skin, and even in his mouth.

As you can see his skin is so red and inflamed. It flares and settles throughout the day, and it itches like crazy! He kept us both awake most of last night trying to not itch, but still getting that itchy twitching. He has shown amazing self control throughout and not scratched at all.

The Solution: Back on all the immunosuppressants!

Since the Transplant in January, Shane was on three different types of immunosuppression, but has gradually weened down to only the Tacro. In one foul swoop, he's back on all of it! It has taken over 6mths to get to this stage, but I hope that it doesn't take as long this time around.

My other hope is that the pain and itching disappear soon for Shane. He was working so hard to get himself back into shape, and finally stood up on a wave for the first time in well over a year. This skin condition is so uncomfortable last time he was unable to go out into the sun, and any small amounts of sweat would cause him considerable pain. Fingers crossed he'll be back in action sooner rather than later, to avoid losing any gains he's made recently.

Naturally, all this happens when I decide to return to full-time work in the vein hope that Shane would be able to return to more roles around the house. *Deep breathe here*. I guess this is a great moment to practice acceptance.

This weekend marks one year since he was diagnosed with the Relapse. I can tell you, the "R" word is considerably worse than the original "C" word. I've been finding myself thinking back about this time last year as a way of processing all that we have been through. There are two main things that come to mind:

1. I am so thankful that he is still here with me today.

2. I can't believe that both of us survived!

Peace

Ps - if any of you have some spare time to drop by, we do get very lonely and would love to have your company:)

Sunday, 1 September 2013

Three Years Today.

Today marks the third anniversary of Shane's original diagnosis. It has been a tough three years to say the least, but after all this, Shane is still here by my side watching TV.

Sometimes I think of him as the cockroach of the human world. He could just about survive a nuclear holocaust. He's been so resilient to so much treatment, its incredible.

The first time Shane underwent treatment it lasted for five months and was a time of great change and adversity. I documented just about the whole experience in a photo journal, which I have kept on my phone all this time.

As a part of a healing process, I need to share these photos and move on from all the hurt all this has, and still is, causing me. I cant put in words how emotional I get when I even think about all Shane has been through.

As you are all aware, this is definitely a roller coaster ride of extreme lows followed by extreme highs. Many of these photos may not be as you expect. Hopefully you will feel the love emanating from them. One wonderful benefit from all of this is how close you become to all of your loved ones. Even people who didn't know us that well provided much valued support and comfort.

These photos are all taken from my perspective, as I see it.

The dawning of a new day. This photo was taken early in the morning after finding out what was in store for us. Today we cancelled our wedding and donated sperm to the bank for the future. At this stage, sleep was almost impossible and so, so empty.

Adjusting to life in 5C.

It didn't take us long to settle in!

Swollen ankles.
From huge doses of steroids.

Our Backyard.

Shane didn't see the outside world for a whole month. It was a long time...

The "Bed Hair" Do.
A winner every time.

Neutropaenic mask.

A very thoughtful gift.

The ice-cream cone that mum bought.
To keep Shane company at night. Cause, what else do you buy a 26yr old male? This cone created great entertainment for us as our creativity expanded out of sterile, hospital boredom. The cone looked remarkable like male genitalia...