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