Thursday, 16 June 2011
A Little Birdie Taught Me....
Nothing that we do is ever easy and it seems as though complications and difficulties tend to follow us like shadows, this last round of chemo has been no different.
The round got off to a late start because on the day that we should have checked into the ward there were no beds available, it wasnt until the following day that we headed to the hospital.
Once there we expected the same routine as always, Either Sarah or Allison (the nurses all seem to be named that) would come in and ask about what medications Nick takes despite having his binder which contains all that info right in her hands and they would gather their tools for access.
"Access" is when they insert a needle that looks like a push pin into the port that was surgically inserted in Nick's chest. This will be hooked up to the IV and that is how the chemo is delivered. That night 3 seasoned nurses all attempted to access Nick but had no luck, the pokes were very painful and after three tries Nick got physically sick and I put an end to the attempts at access - the port was broken.
The nurses had to insert a standard IV into his hand for fluids but you cant do chemo that way because it can damage the veins and cause them to rupture.
X-rays were done and the port seemed "mechanically intact" but it still wasnt working, they had only one explanitation, a blood clot must be lodged in it.
We were told that having the port removed was elective and they would send off the paperwork to have it removed but it could take months.
In order for Nick to get chemo they had to insert something called a picc line into his arm which gets threaded into the main ventricular artery.
Nick was able to start chemo but it was clear that the thought of a blood clot sitting in a non function piece of plastic and rubber in his chest was making him anxious and worried. His fantastic surgeon sensed this and made arrangements to get the port removed during our stay.
Four days... two surgeries...chemo and a lot of upheavel.
While I was there I sat down with the social worker and oncologist and had a really good talk.
We talked about the the risks of relapse and about the possibility of a secondary leukemia because of one of the medications that Nick takes. We also spoke about how Nick has made his wishes clear that should there be a relapse he does not want to do treatment again. It would be the hardest thing that I would ever have to do but I would support his choice. The social worker said that its her role to support those choices as well but she reminded me that right now Nick is speaking from his darkest place, his most painful place, his place which contains the most fear, he is weak both mentally and physically and that I should not necessarily take what he says at this point as his honest and heartfelt truth. She also told us that post treatment for most families is worse then being smack dab in the middle because while there are frequent scans and check ups they arent done weekly and for many it feels as though there is always the possibility that there is some malignancy brewing and growing while we try to move forward. She called it the baby bird syndrome - we need to leave the nest and fly, enjoy the skies and behave like normal birds... outstretching our wings and taking to the air knowing that there is the possibility that our wings may fail and we may fall.
While sitting at home letting my brain wander I found myself watching Nick's parrot named Fruitloop. His wings have been clipped for well over a year and his days of flying are long over but yet he still tries to take to the air .... is he stupid or detemined? Why does he continue to try when the chances of him flying like a normal bird arent good?
After a few attempts at take off he stopped, squatted to the floor and fluffed up his feathers - I waited to see what he would do and for a few moments there was just silence.
I then heard Fruitloop say a sentence that is often said to him when he is upset,
its ok buddy. He then closed his eyes and for a moment I thought I saw sadness but I was mistaken because he then started to whistle a beautiful little melody which was soon accomanied by wing flapping and hopping.
Fruitloop taught me a lesson ..... If you cant fly, you can always sing and dance!