Here we go round the Mulberry Bush

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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...

  • Hi Mo

    Sorry I am a bit late checking on this page.  You will probably already be at the hospital, but good luck and we are all rooting for you as you go through the treatment.

    Peter
    See my profile for more details of my convoluted journey
  • Good luck to you as well Peter I saw a post that you are back on the circuit, assuming you are in the Tuesday H and N clinic for now until they decide what to do with you.  I am there every day for next 4 weeks but the times are all over the place, just had a revised version this morning and only on day one lol.  Keep us posted.

    Mo xx

  • I had my Covid test this morning and biopsy on the back of my tongue under GA on Wednesday morning.  Then we see what it is and what the plan of action is Slight smile

    Peter
    See my profile for more details of my convoluted journey
  • Good luck Peter.

    You're a stalwart veteran of this forum so I know you'll be prepared but keep us all in the loop

    Best wishes

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hello All

    Hope you are recovering Peter and wish you all the best.  Quick update on my travels, two weeks into radiotherapy for side of nose, so far so good no where near as bad as the lip, not even needing pain killers which is a good job as I can only take paracetamol and not allowed to take them due to starting chemo today.  So had my radiotherapy then had to do a quick walk over the other side of the street to the private Spire hospital where they are doing the chemo.  As per usual nothing was straight forward with me, nurse could not find any suitable veins so after 2 attempts they have to let someone else have a go who luckily got in first time, that wasted half an hour or so, then she did my obs and blood pressure was high, no joke just been stabbed 3 times but hey ho, oxygen stats low, I refused to breathe after the first two stabs, ha so she was not happy and by now over an hour has gone by.  Might have to have a pic line if they continue to struggle.  Anyway we got started with the Carboplatin, 1 hour and a flush by now its 6.00 pm and I had told Ian I should be done by 6.30 so he was on his way had to call him and tell him to go back home.  Second infusion of Etoposide also an hour and my nurse is finished for the day.  Then have to have another flush and 30 minute iron infusion, just about got done by 8.00 pm this evening.  In between whiles i have more Etoposide pills to take at home tomorrow and Sunday, Anti sickness pills and steroids, emergency antiemetics if the others dont work and do I feel sick NO I am Hank Marvin, they offered me a sandwich I ate that then got coffee and biscuits, found some sweets in my bag and still snuffled a bag of mini cheddars when I got home.  I have to be different, been struggling to eat since surgery in December, they show me some steroids and I could eat a horse between two rusty bread vans, how strange.  Then we had how to give yourself injection lessons with a pincushion as I have to inject myself on monday something to do with bone marrow.  I am absolutely shattered now.  Am sure things will go down hill from here but I had myself worked up into a frenzy over the chemo and it was not as bad as I thought.  Sorry for waffling but anyone else starting chemo It went so much better than i thought it would.  My mixture of drugs mean that I shall soon be AKA Wiggy and have been given a form to take to Mcmillan if I want to go down the wig route, my hair is so long as not been able to get it cut in nearly a year so that will play havoc with the plumbing.

    Take care all Mad Mo on steroids signing out xx

  • Hi mad mo on Steroids love the update. Get hubby to cut hair to a bob  something to do when steroids keep you awake! Hope Sherman recognise s you. Your sense of humour still strong   Look forward to next update. Onky advise I can give you if you feel nauseous tske a tablet don’t wait for it to pass. Be careful og sea food as well as unpasteurised cheeses while on chemo. Glad radio was ok. 
    will be calling you Iron woman after TonyvStark in Iton msn 

    night Mo onwards n upwards 

    Hazel x

    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 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Mo. Thanks for the update. You have a career as a Stand-Up on the world stage while you are waiting stabbed and medicated in the wings. I long for the, "I'm better so I'm not going to bother entertaining you lot any more....I have a wider audience ......Bye Bye"

    Hang on in there Mo ....get fixed. we are all shouting for you

    Give this vet's love to Sherman

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Dani Sherman sends you a big slobbery kiss, I keep meaning to ask if the Pyrenean in your photo is yours.  I had 3 Pyres before Sherman, lovely dogs my last one Mars lived to a good old age of 12 which is fantastic for a giant breed.  Always loved my dogs, we decided to get Sherman as due to age he will be our last Pup then all this stuff happened.  I have made some plans if I get too ill to cope with him which is one of the hardest things to think of.  

    Hazel ha let my Ian loose with scissors, lol you dont know him, will wait till its desperate before that day, be better getting the dog clippers out and hacking away myself.

    Just taken my 7 deadly capsules shut in a closed room, I feel like I am doing something wrong lol.  Then I can have some breakfast and more steroids, better send him shopping in case i get hunger lust again.

    Have a lovely day all

    Mo

  • Hugs to you Ian and Sherman.

    enjoy your 7 tablets 

    Hazel x

    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 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Mo

    I am doing well - results day should be this Thursday.  I think it is 50/50 primary cancer or benign, but whatever it is it's another step forward!

    You are having it rough, but you make it sound so much fun!  Your antics had me laughing this morning.  Thank you.

    Fingers crossed that the rest of the treatment is not so chaotic and that the good bits continue for you.  Wishing you all the best.

    Peter
    See my profile for more details of my convoluted journey