Hello All
Last May I was diagnosed with SCC of the Epiglottis, had 2 lots of Laser Resection and got clear margins. Thought great that wasn't too bad I have beaten Cancer...….
Well check up in January not too bad said the stump was slightly raised come back in 5 weeks instead of six. Two weeks later I developed a lump on my top lip. Saw my dermatologist and he said you need to see maxilla facial I am certain this is a SCC. So I bought forward my check up by a week and they called Maxillo facial in. By now lump had grown, they did a biopsy same week and it is cancerous. At the same time a new growth was noticed on my Epiglottis, so was referred for biopsy. While this has been going on Respitory have been watching a couple of lung nodules. So I have a possible 3 sites of Cancer. Been to MDT today and Radiotherapy is the treatment for my lip. Biopsy still needs to be done on Epiglottis, but Pre op would not clear me for surgery until I get results of latest lung scan also done today. I feel like I am going round in circles waiting for someone to make the first move and no one can tell me if I have a secondary on the lip from the Epiglottis or a new primary I am getting so confused with what is going on. I was trying to ask questions today and the Radiotherapist consultant said we have to get started or opt for Chemo for palliative care. Are you all confused yet because I am. So then the dentist arrived and thank god I have good teeth so no delays to start of Radiotherapy as the lip tumor is still growing and too large for surgery that might leave me with something resembling a face. Was warned that it will be very painful because of nerve ending etc. It is already so not sure how I am going to cope with even more pain and struggling to get any food in my mouth already and drinking through a straw so HELP...
Oh my goodness Mo. Hope you get to keep the lead!
Presumably they won't insert a PEG either?
Have you discussed stopping the treatment with your team?
Linda x
Hi MO You defiantly get the prize for the most scary mask I e seen ! Yes understand re n g tube would they fit it after your last treatment ? Hats off to you my dear 4 more to go you can do it then ring the hell out of that bell
sending hugs Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Wow. That’s some mask!
Glad it’s doing it’s job.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Mo, please don't give up, I understand that they cannot kill all the pain but they must be able to give you something like pain patches and top it up with a liquid painkiller if required.I know they did not have time to fit a PEG but maybe it an option now that the hospitals are normalising. I take "Lactulose" quite regularly and have no trouble getting via prescription ut not sure about your Crohns whether it would affect it. I have just seen your mask, my that's a lot different to mine, but it's doing the job despite how sore the snorkel fitting is causing the mouth to bleed, you are nearly there and you have shown so much determination, despite the setbacks, so grit your teeth and get over that last hurdle.
I know what you mean with combi boiler losing pressure as I have had but not through the fault of a dog, at least your husband knows what to do next time . He just gets super excited and wants you to get better. Thanks for putting a smile on a difficult moment. Sending hugs, take care , be good.
Chris xx
HI Mo (St Bernard Lady)
Gosh you are certainly going through it!
Please keep going. RT is horrible and yes your mask is complicated and all in all things are fairly grim.
BUT you’re nearly done. And once you’re finished you can write a book about that hilarious dog of yours! He sounds like an absolute darling but is a bit accident prone!
Im sending positive thoughts.
Sharon xx
Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20
Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20
Hello All
Thank you for words of encouragement on Monday I had just experienced 3 bad days and it was getting me down. Not used to being this way as I have always had to be the strong one in all family dramas, and we have had more than our fair share. Had catch up with the Doctor today and he is pleased with the way things are going and said he had good reports about what a model patient I have been, so I must be hiding it well. Yesterday was actually not a bad day and I needed a little break from the constant pain. Good news is 2 days to go. Doc said to make sure I keep taking the Morphine and co codamol for at least 3 weeks as it will remain painful while the tumour crumbles and dies. He is right as bits broke off over the weekend and that is when it is really ouchy. Plus sticky lips keep gluing together and have to prise them apart. Sorry probably too much information. But I didn't give in and at least I only have to fight that snorkel twice more, I have grown to hate it, if looks could kill it would be melted in a heap by now.
Sherman has been reasonably well behaved past couple of days. Also had a lovely surprise today my little grandson came to our gate and waved to me, that raised my spirits a bit. Normally I take him pony riding on Saturday mornings but not been able to for a couple of months now with covid and isolation but hope there may be some light at the end of the tunnel.
Wishing you all well
Love Mo xx
Hi Mo
absolutely brilliant news ,nothing wrong with a good moan on here we’ve all been there ,let’s face it your treatments been long and like us all pretty brutal at least my tumour just melted inside so I suppose I ate my self !!!!Are yiu bringing the mask home ? Mine hang some in the garage when came out for our ruby wedding party , I thought well without her I wouldn’t be here so hung her on greenhouse .Maybthe nextb2 days flie by and yes hunker down for nextbfew weeks remember the treatment keeps working lGreat yiu at least saw yiur grandson ours is 9 we get by on Face time for now l
anyway take care keep in touch am sure I speak for everyone we are all rooting for you ,if yiu have a radiotherapy bell ring the heck out if it.
Keep in touch and woof to Sherman .
any help just ask
hugs Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Ah Mo that's fabulous news. Well done you.
And well done Sherman for being a good boy.
Linda x
Good evening Mo, dont worry about having off days as we have all had them and sometimes it felt like taking two steps forward then three backwards. Wow two days to go then the snorkel can be a memory along with the mask, i think you have done so well as you had a slow start plus how uncomfortable the mask etc has been so i think your Doctor is right in saying what a model patient you have been.
Hopefully, the next couple of weeks will see an improvement with the COVID virus and your recovery so you can get back to taking your grandson out and keeping a check on Sherman, all the best for the next two days. Take care.
Chris.x
I am so pleased you’re nearly there
After all your trials and tribulations you must be over the moon to see tomorrow.
Tuck yourself into all the love at home , human and Sherman ( that’s such a wonderful name for a St Bernard, it always makes me laugh) and heal.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
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