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Waiting and waiting
J-S
3 Posts

I was diagnosed with head-and-neck (tongue) cancer in July 2021. I had an surgery followed by radiation therapy. That took care of the first tumor but we found out a new one on the other side of my neck. I moved on with chemotherapy and immunotherapy. Then in May 2022 I had another surgery to remove the second tumor, although we couldn't remove the whole of it. I had some complications (chyle leak) and stayed in the hospital for almost 4 weeks. The side of my neck became infected and now the tumor has turned into an open wound with pus coming out. I should begin radiation therapy next week. I feel so angry and scared and beaten up at this stage. My voice has deteriorated a lot, I have to puree my food and thicken my water, I lost so much weight, and I currently have a trachea to help me breathing. Things never seem to improve.

5 Replies
Trillium
2045 Posts

@J-S Welcome to this caring community of folks who also have struggled with cancer. That said, you are on a very difficult road. So sorry you are having such a rough go of it.

You will be glad to meet @law1 who has also struggled with tongue cancer.

Thanks for sharing with us. We are here for you to share with anytime. Even if it’s the middle of the night! Wishing you more comfort and healing as the days pass.

Warm hug if you need one❤️‍🩹

Whitelilies
2343 Posts

@J-S Hello and welcome to our caring community…..I am sorry, for your reason to join us here; and you surely have had “quite the journey”……I do hope, that you will get stronger, each and every day…..Can the Dietician at your hospital, offer you ideas for nutritious foods/drinks? (to help with weight gain)

As well, you can reach out to the Oncology Social Worker, at your Hospital…..just to talk…..they are a wealth of resources and knowledge….I had many sessions with my social worker…..I felt truly supported……(very different kind of support, than from family)…..

I will include a link for you : “Head/Neck/Tongue”….below…..please read through……of others' experiences.

If you wish to reach out/'tag' a member; just type “@”screen name (no space after @), select name, turns blue, they receive your message.

So glad to see your first post; soon others will chime in, and offer greetings your way.

Welcome, with open arms….

Whitelilies

#tonguecancer

law1
716 Posts

Hello, and welcome, @J-S — although it's not a really fabulously happy time for you I realize. Both @Whitelilies and @Trillium are familiar with my tongue cancer journey of about 4 yrs. ago. It was a very frustrating and horribly painful time for my emotions and my oral cavity. I did not require surgery, I declined chemo (too scary !!!) and instead chose the 36 rounds of radiation……the tumour at the base of my tongue and my right tonsil was kicked to the curb…but the recovery was very, very, slow and difficult.

My voice was not strong, very hoarse, I could not open my mouth more than 1 cm, I refused to swallow food, water, and even some of my opioid meds….too painful. What helped me get through each hour was having a great pain management oncologist, a wonderful team of speech pathologists, psychiatric counselling, nutritionist, and a marvelous topical anesthetic gargle called Lidodan 2%. It's a thick red liquid, ask for it by name from a pharmacist, and it numbs your mouth for about 10 minutes enabling swallowing….chewing was not even a dream for me until about 9 months later. At one point I refused all liquid and foods, and wound up in the hospital for de-hydration….twice.

Additionally, I wonder if you have searched all your Cancer Centre medical team resources and library, and tried an amazingly helpful Cancer Helpline toll-free number: 1-888-939-3333….operated by oncology-trained advisors. Your recounting your diagnoses and recovery issues, coupled with the awful return of tumours and infections, are remarkably helpful for detailing your history to discuss with your doctors.

My tongue seems to have shrunk in length and its movement has been greatly curtailed so there are exercises available from speech pathologists to maintain what flexibility remains. It took about 9 months for the horrid tongue blisters to diminish, the new skin to grow back on my neck, and I was then able to manage mashed potatoes, soup, I pureed everything so I avoided chewing…..Boost and Ensure were 2 protein drinks which helped maintain my weight…after a 40 lb. loss.

Please continue your fight as its light is always at the end of a very long tunnel…..and keep us posted.

J-S
3 Posts

@law1 Thanks for sharing your experience. It's definitely helping to hear about others! You must have suffer so much! Thank you also for indicating these resources and products.

law1
716 Posts

So glad you got some usable info from me , @J-S. I find this website to be helpful and full of very kind and empathetic people.

Another great way to seek info on this site is to look at the yellow bar across the top of the page. Select Forums, scroll down and select Types of Cancer, then select Head and Neck. Our cancer location is classified in the Head and Neck Group. Additionally, at the bottom of the page you can select Publications, which has free brochures on Oral Cancer and other readings on recovery, social services, etc, etc.

Google is not a reliable resource, but searching the Canadian Cancer Society is; so is Johns Hopkins University Hospital, and Sloan-Kettering Cancer Institute. (the last 2 are in the US)

Ciao for Now,

law1

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