Over the 18 moths since diagnosis there have been plenty of ups and downs. When the chemo started coming good mid year my views changed from planning my out, to looking forward to Christmas and beyond. It has been a good ride. I haven't felt that well for a great deal of that time, but that has been overwhelmed by a sense of future, that I have more time than was initially planned when this started, that my positiveness and resilience was pushing me on. To me it was really a promise of future, a promise of more time, a promise of the unknown, a promise of disease management.
My feeling now is of a withered promise. The discussions with the onco are now as much about quality of life as they are about treatment, and I know that when the balance sways more towards the quality of life discussion that's the downhill slide. We aren't there yet, we still have options to work through, but we are certainly closer.
I am finding this a little harder to deal with at the moment. I do feel much better than previously with the new drug regime, we have dropped the toxic of the 3 drugs on the protocol, no more Irinotecan at the moment, and that has made a difference. But I still have a big fatigue issue that I am trying hard every day to overcome. I feel I am letting my family down, that I should be doing more, I try, but its difficult, and its difficult to explain how hard it is. I just keep trying to do what I can, when I can, and hope that's enough.
On the flipside, I am feeling a lot better with the change of drug protocol, and so perhaps thats why I am thinking more (is that a good thing or a bad thing?). Awesome to catch up with great footy mate Rob R. I have been coaching teams against Rob and working with him in different capacities in footy for 10 years, and have formed a great friendship. Also made the St Ives AGM yesterday, and was great to chat some planning with Rob McG and the gang. Such a pleasure to work with this years committee and looking forward to the early 2016 planning. Thanks for meeting up for lunch JG, always great spending time with you. Luke, good to see you finally home from hospital and working on the mend. Listen to your body and rest when it tells you to, take care and keep improving, 1 game at a time eh. Love my footy mates.
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| Rob R, good brekky bud. |
Lastly I want to apologise for the sometimes downer conversations I have. However the objectives of this blog has always been twofold. First and most important for me its a way of boxing up my thoughts and I find putting them into writing makes them real and allows me to get those thoughts that are bouncing around in my head together, and to put them in a box and move them on. Secondly its to update people of my journey, where I am, what I am doing and feeling. All raw and honest. No sympathy wanted, none.
But whatever I am feeling now I do know that tomorrow is another day. Just sometimes, its hard to look that far ahead.
Love.
Trev.
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