Checking in for the fourth week of this trek that has been thrown my way. As you will all recall it was pretty grim at first and darned scary, especially for a scaredy-cat like me, but all test results done several times a week, since, have been very encouraging in the belief that Heffalump is in the process of moving out. He’s not wanted.
My appointment with Dr Jason Butler yesterday at the hospital (and yes he’s good eye candy, very kind, married to a nurse, with children apparently) took a long time to happen as for some reason they were running an hour late. It was worth waiting for though because all the reports contained good news. I am stoked and more positive than ever that I will beat this bastard disease and get back to my normal life.
Next appointment is this Thursday, and again on Saturday for chemo. As Tim will be here again on the weekend, it will be nice to have him sit with me on Saturday….it will help him understand what actually goes on during these sessions over anything from 3 to 6 hours. I think Saturday will be 4 hours. The actual chemo dripping into one’s veins doesn’t hurt – it feels no different unless of course it’s like the previous lot that had an extra drug added causing side affects. I marvel at the fact that my team of doctors sit in meetings and work out together the very best dose of this stuff for me personally, to get me better. They deserve a medal each in my opinion.
While sitting in the huge waiting rooms, a middle aged couple sat next to my sister and I. The wife was an attractive 50-something I’d say, who looked stressed but had a friendly smile. The husband was the ill one and he scowled the entire time he was there. Their social worker came to speak to them and asked how the past week had been for them both. He grumbled about how tired and sick he is, how he couldn’t eat anything, wasn’t interested in anything like books or TV anymore and generally could not come up with a good reason for carrying on. The social worker listened carefully, nodding and making the appropriate sympathetic faces.
His wife then told her side and it was rather sad for her. I couldn’t help thinking that this particular chat with the social worker should have taken place in a private room rather than a very public waiting room. Apparently this husband was blaming his illness on his wife. Unfair I wanted to shout, but instead I looked at face book on my phone. The poor woman was obviously running around in circles trying to make life easier to cope with for the man but was being berated for every move. I felt for her. I could have punched him, sick or not. After a long discussion, the social worker’s last words were ‘It’s not her fault. You cannot blame any one person for your illness. Please don’t kill each other’.
A young Asian girl entered with a big bag and stood in the middle of the walk way of the waiting room and proceeded to set up her portable xylophone. Oooh lovely I can hear you all saying……NOT! There seemed to be no real tune she played and the constant ringing and howling of this instrument unsettled a lot of those waiting. Some moved to the far end of the room. When she finally finished and packed up I suggested to my sister that we clap. I won’t tell you what she said. Let’s just say we hope she is not there playing that thing next time I have an appointment.
After such a long day, we returned to the unit where I was ready to collapse. Lack of energy is frustrating, but I have found that by giving in and having short rests as needed is the way to go these days. My dream at the moment would be to go downstairs to that nice little coffee shop called The Jam Jar, for something nice for afternoon tea. …but I know it’s not possible yet. Apart from having to worry about germs etc, my energy doesn’t last long enough for the trip down 5 floors and down a few steps to the coffee shop, as well as getting back up here. The day will come though. Coffee and cake are the goal.
The sun shone beautifully today, I felt rested and mostly well, and all is ok with my world at the moment. I can only take small steps. Each small step is another step closer to my being well and going back home. How long? Well that will be revealed as it happens.
Thank you all for your kindness and love. I am so grateful and feel very blessed to have such wonderful family and friends. Much love and big hugs.