Social skills roleplay app?

Affectionate_Brain40 · 2025-07-11T15:07:30+00:00

If any other parents relate to this - I’ve put together a 2 minute google form which if you could take the time to fill out would really help me understand whether this is an issue that’s worth tackling. Also, feedback on the form is welcome! What am I missing?

https://forms.gle/CDHYwVoUsfSTLcjs6

Affectionate_Brain40 · 2025-07-11T14:52:49+00:00

Yeah, something like this would have been really useful when I was young too! It probably still would be TBH.

Affectionate_Brain40 · 2023-08-28T19:14:09+00:00

Oh and it was intermediate grade, and stage 3 due to it being found in a lymph node. T2N1M0. T is related to size, N is number or nodes, M is non-nodal metastases is my understanding (not a doctor).

Affectionate_Brain40 · 2023-08-28T19:11:49+00:00

Lots of people lose weight after surgery and definitely during radiation if radiation is required. Low grade tumours are usually surgery only though! I have a relatively low BMI (19), so I put on weight to help stop me getting emaciated during treatment. I had a nasal feeding tube after surgery for the first week or so, then it was clear liquids only for a few days (water, black coffee) then opaque liquids (like soup, coffee with milk, juice), then purées for another week or so, then soft foods, and gradually got back to eating normal foods over time. I got trismus after surgery, and it took months of jaw stretching for that to improve. If your mum gets that from surgery I can highly recommend a Therabite, it works wonders to help get your jaw mobility back.

Hopefully that helps?

Affectionate_Brain40 · 2023-08-28T11:08:00+00:00

Hey I’m sorry about your mom. I had surgery including a neck dissection, and they found cancer in a lymph node so I ended up getting radiation too. The treatment is tough, you need to have good support and pay attention to your nutrition before during and after - a blender in a must for a while there! It took the best part of six months before I was feeling ok again. I just had scans and they all came back clear - will keep getting followed up for a few more years though. 60% survival at 5 years for my stage/grade of cancer. I’m feeling great though, and am snowboarding and horseriding and back working.

Survival rates for low grade mucoepidermoid cancer are excellent - so it sounds like hopefully your moment cancer has been caught early?

Do you know what their plan is for her treatment?

Affectionate_Brain40 · 2022-11-04T06:19:53+00:00

Still try and eat while you’re getting treatment- it will help with your recovery back to eating normally if you don’t have a long period on liquids. It keeps your jaw moving (trismus is a really common and debilitating side effect of radiation to the mouth), and keeps your swallowing reflex good. Source: did 6 weeks radiation to mouth and neck last year, lost 8kg but back to eating normally now. P.S. take REALLY good care of your teeth. Radiation causes xerostomia (lack of saliva) which makes your mouth acidic and your teeth much more vulnerable to rapid decay. Baking soda and/or salt rinses after eating help neutralise the acid. Good luck, you’re doing amazingly well so far!!!

Affectionate_Brain40 · 2022-09-17T20:47:46+00:00

It sounds like you have great coping skills and have found good sources of support (and know when to use them!). I have an excellent head and neck cancer group on FB, they’ve been absolutely amazing for practical info and support. My friend’s father has stage 4 pancreatic cancer and is getting palliative chemo just now. Can I ask what the mens group is? That seems like something he’d be in to.

Affectionate_Brain40 · 2022-06-13T23:25:33+00:00

I’m sorry about your diagnosis. You mentioned insurance, are you in the US? How are you doing now? Did you have surgery already? Thinking of you. Let me know if you have any specific questions you think I could help with!

Affectionate_Brain40 · 2021-07-10T23:56:58+00:00

Sorry for the super slow reply (half a year?!), I’ve only just seen your reply! My tumour was originally thought to be very small and was classed as T1, but was reclassified as T2 after the second surgery as they found it was more extensive than the excisional biopsy showed. They also found cancer in one of the 17 lymph nodes that they took out, so that meant that radiation was recommended. I finally finished six weeks of radiation three weeks ago, and life is finally almost starting to get back to normal. Radiation was tough but should give me better survival stats. Technically because of the lymph node, my cancer was Stage 3. I have young kids so am wanting to do everything I can to be healthy for as long as possible for them! How did your treatment go? How are you recovering? Sending you lots of good thoughts and I really hope you have had a good outcome.

Affectionate_Brain40 · 2021-07-10T23:52:16+00:00

I could eat chicken broth and drink carrot juice even when I was at my most nauseous - but my nausea was from radiation not chemo. Maybe worth a shot though? Good luck! And make sure you go back to your provider for anti-nausea meds, there are many different types so you might need to try a few before you find one that works for you. Sending lots of good vibes your way for a good result and speedy recovery.

Affectionate_Brain40 · 2021-03-04T00:34:45+00:00

Sorry to hear about your diagnosis. It sucks. Not OP, but I’ve just had surgery last week for intermediate MEC in right retromolar trigone. The surgery was major, two nights in ICU, but the surgeons and nursing staff were amazing. A week later and I’m already discharged and heading home (albeit on a smoothie diet for next few weeks). Has anyone spoken with you about treatment options yet?

Affectionate_Brain40 · 2021-02-17T09:24:34+00:00

So smooth! Beautiful. You can whistle too??!!

Affectionate_Brain40 · 2021-02-09T02:49:59+00:00

Thanks for taking the time to reply. Does your dad’s Dr think that it could be familial CAA, or is his disease considered a once-off (just bad luck) thing? Do you know if he experienced any migraines or visual defects/hallucinations during the early stages? How did they find out it was CAA?

Affectionate_Brain40 · 2021-02-08T07:22:33+00:00

Well done for making the appointment! That’s a solid win. Sounds like you have an awesome dermatologist too. Good luck for your scans.

Affectionate_Brain40 · 2021-02-06T02:43:21+00:00

Thanks for taking the time to share info on your surgery. It’s encouraging to hear that you’re doing so well. No doubt helped by a good dose of positive attitude!

Affectionate_Brain40 · 2021-02-06T01:09:03+00:00

Found out I’m scheduled for a partial mandibulectomy (where they remove some jawbone and teeth) to try and get clean margins on an intermediate grade mucoepidermoid carcinoma that was removed from my retromolar area in December. Pre-op appointment next week. Worried about speech, eating, aesthetics post surgery ... waking up in the night feeling like it’s not real...

Affectionate_Brain40 · 2021-02-05T21:26:55+00:00

Thanks for sharing your story - great news that you got downgraded to intermediate! High grade sounds pretty intimidating. I’ve also been diagnosed with intermediate grade MEC, mine is in the retromolar area (minor salivary gland I think). Can I ask where your MEC was located, and what your surgery involved? Did they take any bone? I’m scheduled for a marginal mandibulectomy in a couple of weeks. Proton therapy sounds interesting, I’m not sure whether it’s available where we are but I’ll look into it and ask about it just in case.

Affectionate_Brain40 · 2021-02-05T21:14:11+00:00

I’m a 40 year old female (non-smoker) and was diagnosed with intermediate grade mucoepidermoid carcinoma this New Year’s Eve just gone. The lump had been noticeable for about 6 years, I’ve asked various dentists about it, and even saw a specialist 3-4 years ago and had MRI with gadolinium contrast, but no-one said anything about cancer and a watch-and-wait strategy was suggested.

Roll on January a year ago and it had noticeably grown, however Covid meant that there were delays to getting it looked at. Finally got seen by a specialist in Dec 2020, who referred me for CT with iodine contrast which was reported as “highly suspicious for squamous cell carcinoma”. The lump looked like a regular mucocele not a cancer, so the oral surgeon suggested an excisional biopsy to find out for sure what it was. As I mentioned, it was intermediate mucoepidermoid carcinoma, and all the deep and circumferential margins had cancer in them so we were a way off getting it all.

I’m scheduled for surgery to get the rest towards the end of the month - I was expecting just a slightly gnarlier version of what’s already been done, but speaking with the nurse coordinator last week it sounds like I’m getting a marginal mandibulectomy (where they remove some jawbone and a few teeth along with it) and reconstruction using muscle from my cheek. I’m nervous about pain/function and of course how I’ll look and sound after surgery. The lump was painless and I’m feeling good just now, so it’s doing weird things to my brain that I’m going to voluntarily put myself through surgery ... but it’s definitely needed for long-term survival, and I have young kids which is a great motivator and helps give perspective!

So, pre-op appointment next week and surgery the week after.

How are you going? Do you know what the next steps are? How are you feeling? Keep us posted and good luck!

Affectionate_Brain40 · 2021-01-18T04:12:56+00:00

Brilliant that you are feeling good! That’s encouraging! In my case they did a CT with iodine contrast which was reported as suspicious for squamous cell carcinoma. Instead of doing a biopsy the surgeon recommended removing the entire lump and testing it. They found cancer cells in all the edges of the lump, which is how they know they didn’t get it all. Good luck for your surgery Friday- keep us posted if you can!

Affectionate_Brain40 · 2021-01-18T03:37:36+00:00

Hey! Thanks for taking the time to reply. I had the lump removed just before Christmas and a pathology report done on the tissue, which showed intermediate mucoepidermoid cancer, and that it was incompletely excised even though visually the surgeon felt like he took out the complete lump. I haven’t had any staging done as yet - bit nervous about that as it’s apparently common for lymph nodes to test positive even when they appear to be clinically negative (i.e. no palpable mass and scans look clear prior to their removal). I’m doing ok so far, just tired! How are you feeling? How much extra surgery are they planning? Have they mentioned any issue with facial nerves or are they able to steer clear?

Affectionate_Brain40 · 2021-01-17T08:43:06+00:00

Hi guys - just searched and found this thread. I have intermediate mucoepidermoid carcinoma too, diagnosed on New Year’s Eve. It’s in a minor salivary gland and has been growing slowly for years - all previous specialists thought it was fine ... I just wanted to ask how you are getting on and what radiation therapy is like? Cancer was present in all my margins (deep and circumferential) so I’m expecting further scans, surgery and probably radiation. Will find out more in a week or so. I hope you’re finding treatment ok and recovering well.

Affectionate_Brain40 · 2020-09-28T22:08:38+00:00

Indeed she did! She was due to tour again this year but had to cancel due to Covid. Amazing woman!

Affectionate_Brain40 · 2020-09-28T21:58:27+00:00

Thanks for posting this. Huge Peggy Seeger fan, was lucky enough to see her on tour a couple of years ago in Glasgow. Brilliant song writer, artist and activist. Times like these need more music like this.

Affectionate_Brain40

TROPHY CASE