Emelia’s courage shines daily, she doesn’t see it, but its there, in her humour, her empathy and her patience.
The Beads of Courage are a charity, each beans represents something, for example a chemotherapy session, having blood taken or a biopsy the list is long, Emelia was only diagnosed 2 months ago and yet her string of beads is already long. This is a great way to visualise what she has been through so far, especially when she is feeling low.
Last week was a tough one, the ward rang us Monday to check when she goes in for bloods, ready for chemo on the Tuesday, I explained we would be with them at 10am and they do bloods then, we wait for results and chemo starts tea time. On the way to the hospital on the Tuesday the oncology department rang asking when we would be there, for bloods, they explained ward was busy but expecting her. We arrived at 10am, bloods were not taken until after lunchtime. At 2pm we were informed that the results of the bloods were too late coming back so chemo will not be starting that day. There was no bed on the teenage side of the ward, but the side room on adult side would be coming available just waiting transfer. Shift change at 7pm, still sat in retreat (day room – fab room with kitchen, large TV but not working and pool tablet, sofa was okay but …) the night staff said there was a bed in one if the bays Emelia could use and they would put a z-bed next to it for me. This happened at 10pm, this is where the sofa is good but not for 12 hours. At 10.30 they took more blood, which we thought was strange. Later we found out they hadn’t taken some blood for liver functioning which is a standard test before chemo 🤷♀️. Emelia finally got her side room at midnight 14 hours after arriving. We were both exhausted, chemo finally started at tea time on the Wednesday, because of the long day and lack of sleep, Emelia wasn’t as physically ready for this round as she would have been. And its having a knock on now I think a week later. I haven’t caught up, so feel very emotional and tearful. Easter cheer has been hard to see and I am not feeling very positive or cheerful.
There was a small light, she had her MRI early as the consultant was concerned it was growing and the results show a slight reduction. This is good, we need time to process that its good news, its difficult when you are in the middle of it all and they suddenly decide to scan early to process it all.
Its hard watching her struggle this time, because of the anaemia, chemo and infection from the week before she is very weak and can’t walk far, this is frustrating her and she is finding it all too hard. She is questioning whether its worth it, if she going to die anyway. Its such a rare type and place to have cancer that they are trying their best to get rid of it, my understanding is that this type normally starts in the bones and then amputation is an option – but hers is inoperable due to the fact its wrapped round the artieries to the brain. We hear parents in the retreat talking about their children’s cancer being fully treatable – so I totally understand why she feels this way, but its the hardest thing to hear. Due to her research at uni, when she goggled her type and place, she got research papers up, and they were not get results/survival rates, this didn’t help. However this is where the courage beads came, I took them out the bag and said this is why you feel so crap, look at all you’ve have been through in such a short time, don’t be so hard on yourself, she is being injected every day with blood thinners, it hurts. She is in and out of hospital no sleep. Biopsy and scans not nice – this beads represent all of this, such a great visual aid.
I want to say things are picking up, but can’t her mouth is sore, her finger tips hurt and she is weak, stumbles about. She hates how she looks, her eye, the weight gain from steroids and lack of exercise – she did have a friend in the snow in the garden yesterday and I heard laughing so maybe things are improving a little – but so far the rollercoaster hasn’t slowed down, maybe next blog will be more positive. I find it hard to write when I am not feeling positive and difficult to publish too, but its the raw truth x