Hi there,
I am so sorry to hear about your sister and your brother. This must be devastating for you, your sister and your families.
I had SCC and a total glossectomy last year, I had a trach in, not as long as your sister will potentially have hers in for, but for long enough. It's easy to clean the trach, you will be shown how, but it isn't too bad.
The feeding tube is the easiest thing in the world to look after. I had a RIG (aka as a G-tube in the US) which needed the water in the balloon to be changed every week. My husband did that. The nurse will coach and guide you until you are comfortable.
Things that help me:
- A whiteboard and whiteboard pens. This gave me my voice.
- A rattle for when I wanted someones attention
- Boxes for tissues/handkerchiefs for when I needed to spit out mucus
- Notebooks to write down how I was feeling, but only for private use
- I had a horseshoe shaped pillow for my neck
- I got obsessed with making my nails look nice
- Small ice chips flavoured with mild citrus flavours. This was for when I was learning to swallow. My dietitian and speech therapist recommended this.
Questions to ask:
- What do they recommend you provide for your sister, such as nutrition supplements
- What physio exercises does your sister need to be doing, and when
For your sister:
I was told I would never speak again, but I can. I started to say some words the 4th day after my surgery. They gave me a valve to put on the trach which directs the airflow back over the larynx. It is hard work at first. It's easy to breathe in, but breathing out is hard. So I tried talking as I breathed out. I wore it for 15 minutes the 1st day, then built it up slowly.
If I wasn't using the valve, I tried to speak without it. Just naming things in my room, out loud. Then i did the alphabet out loud. I wrote down each letter, if I could say that letter I would cross it of my list.
Singing to my favourite songs helped me too. They were garbled at first and I had no control over pitch, but they helped my mind and my mood.
