Well now, I've been on a bumpy journey. (Aren't we all still on one). I've been ill and not enthused with anything.
So way back in Dec I started to throw up, 3 times a day. I reduced my calories down to no more than 900 and would still be ill daily.
I slept on the sofa every night. I went through 5 weeks of dry mouth (day and night). I felt cold, lethargic, upset, you know...rubbish.

I went back to work, but kept falling asleep at my desk. My boss wasn't very helpful. (Luckily the above power are)

I had lumps in my jaw. One was nothing, the other was nothing after a biopsy. I now have no evidence of disease. (Only 5 years until remission)

Hospital wasn't very helpful with sickness, tiredness, weightloss etc. Kept wondering why I was being sick, why was I losing weight (I've lost 40kg since Jan 2019), why am I dehydrated, but nothing offered, just more nutrition, more ensure, more calogen (high fat 30ml = 100 calories) but up it all came. I even threw up 2 lots of anti-sickness medication. Nothing worked.

I had a swallow test. Sadly all the vomiting and no eating has given me dysphagia, plus my throat was swollen. Exercises and swallow liquids until I'm encouraged to try thicker liquids.Boo.

Then 2 weeks ago every time I tried to drink anything other than cool water, I would cough until I was sick. I couldn't use the G-tube as I threw up straight away. I ended up in hospital for a week after contacting my team and asking for help. I had 6 days of no food, only water and weak squash.

Turns up I had a rare reaction to the immunotherapy. Inflamed stomach and small intestine. No pain, just vomit and lots of it.

I'm home now, I'm on strong steroids and immune suppressors. Isolation for me. My thyroid (low for 24 years) is now lower. I'm getting better though. I can vacuum the stairs now. I can stay awake with only one nap during the day.

My taste has returned too! My mouth wants everything! I'm lucky that I can have onions, peppers, tomatoes , garlic (all raw and cooked), mild salsa, smokey chicken, guacamole etc. Only for taste then spit out as food gets stuck halfway. I'm putting 3 ensure plus and 3 ensure juice (220 ml = 330 calories) a day, in the tube but drinking full fat jersey cows milk (100 ml = 79 calories) as a milkshake, fruit juice, water, coffee, hot chocolate. I want more! So I'm returning to my old self. My swallow is a worry. I'll contact my team about trying creamy soup again for thicker liquid to aid swallow. I might even try a thinner smoothie to give me something to work with.

My scars are coming out well. I'm rubbing in thick lotion into my neck, shoulders and jaw to help movement (Physio showed me what to do). Even my speech is improving (not bad for not having a tongue. Miming to songs helps with movement, or badly singing on my own).
Minimal dry mouth. I wake up once in the night so the toilet and some water. I'm doing housework (only a little), I'm doing my physio at home.I'm getting used to my smaller body. I've even booked an all inclusive holiday to Portugal with my my sister in Oct. I've learnt that I'm brave to ask for help, but I wasn't firm enough to ask for it earlier, which has put me in a worse place swallow wise than before rads. I will get there again. I have taste buds and I want to use them.

Now that you have found out why you've been vomiting alot & it is being addressed, you can begin to consume more calories & recover faster. Hang in there!

I wondered why we hadn’t got an update from you lately Jazz.
This sure wasn’t what I wanted to hear, but happy they got to the bottom of it. I’ve been there where you don’t what to complain and try to tuff things out, but we’ve got to advocate
for ourselves. Too often we let things go too long and make a bad situation worse for ourselves all because we don’t want to feel like we’re complaining or hoping it will resolve on it’s own. Do something fun now that your feeling better. Forget the cleaning!! Lol.

So sorry for your ordeal but glad they sorted out what was happening. Glad your taste buds are coming back.

So glad to hear from you ❤️. Props for persevering through all of that. Vomiting and dysphagia are so disheartening - especially when you've been progressing. I remember trying to eat a bowl of mushroom cream soup after radiation. I could not taste or swallow it. I burst into tears. And vomiting is so awful...I couldn't eat anything during chemo and fainted at the doctor's office once. I'm really glad that you found the problem. Keep singing and drinking and tasting!!!!

Hello dizz,glad to hear they found the problem I hope you recover quick there are people like me need you here.I was so scared before my surgery and you gave me so much valuable info thankyou praying for you.

Glad to see you update and hear you are doing pretty much ok, Diz!!! The stomach issues are something I struggle with almost every single day. I take zofran frequently which helps tremendously. After OC treatments are over, remember the recovery takes a LONGGGG time!!! All kinds of things pop up and while they're not anything as serious as OC, they can keep us down, feeling lousy. Glad you are on top of your health issues and doing what you can to improve.

Hoping you are taking good care of yourself and having a great day!!!

Thanks Christine. It was a rare side effect (only person in the trial) to have this stomach inflammation. Ahh well. I take lanzaprazole which helps with other stomach issues.

Well I've been doing well. My weight has been stable for 2 weeks now. I've not used the feeding tube in neatly a week. I'm mixing foods and ensures (dinner tonight is soup, ensure and ice cream). I'm hoping that a few more weeks of this will mean no more tube. Then, once isolation has lifted, I can go swimming.

I'm keeping safe at home during this awful time. I hope you all are too

Any updates?

Yes. Hi!

I'm still here, living life with my husband and my cat. I have a new full time job after being made redundant due to covid.

I'm doing OK. My speech is good, but I still have some health issues that are popping up. I'm happy to be here though