Hello, everyone!

My sister, a 60-year old nonsmoker, was diagnosed with SCC last week. She had been diagnosed with Oral Lichen Planus some time ago but was told the condition was harmless and it didn't seem to be affecting her in any way.

Additionally, my brother, a 40-year smoker, was diagnosed with SCC last year. Unfortunately, after dealing really well with a glossectomy, radiation and chemo, he lost his battle after 9 months due to a suspected embolism.

Needless to say, we are reeling.

I will be her primary caregiver and am freaking out. She is due for surgery (glossectomy and reconstruction) on 7.22 and will have to be alone at the hospital. She is due to stay only 5 days.(possibly due to COVID?) and then comes home with a trach (which is supposed to be in for 3 months) and a feeding tube. Plus, the wounds from her reconstruction. She will have a visiting nurse, which is great, but I have to learn how to do the tube and trach care. HELP!

Does anyone have any advice that will help make this time go smoothly for everyone? What should I be asking the visiting nurses? Any products or procedures you would recommend? I am going with her to a doctor appointment tomorrow - what should I be asking?

Thanks for all of your help and guidance.

So sorry you have to be a part of the forum, but know that you are welcome.

First thing, you may want to get a dry erase board for your sister while she’s in hospital so she can make her needs known. These dry erase boards are available in dollar stores. Some people use an app on their phone but learning to use a phone app in a week may be the last thing on your sister’s mind. Don’t worry about what you don’t know, my experience is everyone at the hospital and this includes the visiting nurse is very kind. All you need to do is to ask. They will show you what you need to do. As far as the feeding is concerned, we got a show and tell from the nurse. We had to show her we knew what to do before she would allow us to go home. One you are home, you can ask the visiting nurse about whatever you may have questions about. You may want to write down on a pad all the questions you have so that you can ask the doctor/nurse when you have an appointment or when the nurse comes to the house. Be organized so that you can track the amount of water, or doses of medication your sister has taken so that you can talk to the doctors if problems ever arise.

Of course, you are welcome to ask on the forum any time.

the white board comes in handy! I used to write the day of the week and the date each day so that he would know. His mind got a little lost during treatment but remember how it was during covid...we lost track of the day of the week so easily!

i also put up how much of each syringe he needed to use for his feeding tube.

also a great place to write something nice.

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.

Oh, wow! Thank you, everybody, for your support and encouragement. My sister goes in on 7.22 for what they are saying is a total glossectomy and reconstruction and bi-lateral neck dissection. Because of Covid, I was unable to attend any of her pre-surgery appointments. On 7.22, we just drop her off at the hospital and go home. We won't see her at all until she is discharged, 5 or 6 days later. Was anyone else released so soon after surgery?

Everyone is different. I was out after 9 days, but I know 1 person who was out after 7. If they don't feel your sister is ready to come out, then they won't discharge her early

Well, my sister had her surgery and they removed her entire tongue and part of her pharynx. The trach will stay in until after radiation and the feeding tube is permanent.

We had initially thought she would come to the home I share with my mother, who is 85 and has some cognitive and hearing issues and I am working full-time and managing two houses while she’s recovering. Now we are hoping that she gets to heal and recover in a skilled nursing facility as it is too much for me to handle. Did anyone else recover in a rehab/skilled nursing facility?

The surgeons have said that she will never be able to eat or drink via her mouth. How will she handle radiation and it’s effects when she can’t do much to soothe her mouth?

Have the surgeons mentioned a feeding tube? If your sister is not able to eat and swallow, that’s probably the way they’ll go. My husband had oropharyngeal cancer and after radiation, scarring closed his esophagus completely so he was not able to eat and drink. Although he eventually found an interventional radiologist who opened up his esophagus, he developed silent aspiration, so he was not able to eat and drink despite the procedure. A patient gets enough nutrition through the feeding tube so that’s not a concern, and it won’t impact radiation treatments. It will be a new normal for your sister, I would think the most important thing is for her to slowly come to terms with it. There are a number of members of this forum who depend on a feeding tube as a result of their treatments. Hopefully, they will see your post and chime in.