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 

    glad you enjoyed Crufts would have dive you good to get out and do something normal. So pleased you’ve had s good hospital day it really does help when you get someone who explains and listens. I

    my first consultant was a bit gung ho shouting st me half your tongue will be cut out but not to worry  !!!! Umm wasn’t my tongue was my tonsil etc etc  but when I got to see the top person totally different and took time.Unfortunately done if the consultant s become immune to dealing with us who are mere mortals and they deal with us not always as people. On the other hand it’d not a job I could ever do delivering cancer diagnosis every day.   . Lots if us here who can tell with the radiotherapy and if you have it chemo usually chemo in our cases is cisplatin which is pretty crap but not as crap as some. Let’s get the epiglottis sorted then baby step the lip ,like you say the lung nodule is on the back burner  so stay safe .

    we are over in Spain at the moment so if we have to send isolate suppose could be in worse places. We are being sensible not mixing being anti social  lol riding our bikes at the moment our supermarket s are fine no panic buying .

    please keep in touch and sending positive hugs 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • We are also happy Mo as a miniature Dachshund won Crufts and we have two of them, we brought the first one to keep me company when I had a laryngectomy as I could no longer work, the second one came along as a companion for the first one. I think animals can make a world of difference in helping people recover.   Take care .

                                                                           Chris .x

    Its sometimes not easy but its worth it ! 

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  • Glad you got pleasure from being an owner of the Best in Show.  Animals are great and they pick up on things, my boy has gone into protective mode with me.  Gets very upset if he does not know where his mum is.  He was very upset last week because I had a really busy week with appointments, social outings and work.  Worked yesterday my usual day but just been told I am now to stay away because of my immune system.  Besides the cancer I have Crohns and Asthma.  Got an appointment call yesterday for the surgery and it was for 2nd April.  Told the admissions clerk I was also happy to go on the list for any cancellations, got another call this morning and I am now in for next Wednesday 25th.  The whole world has gone mad with this COVID virus never known so many selfish people.  I cannot get a loaf of bread anywhere today.   Hope all those having treatment have some back up especially anyone having Chemo.  Take care all of you.

    Mo xx

  • Hi Mo

    hope all ok with you and good luck for the 25th .Keep in touch and yes it’s getting real scary over in IK we are still away at the moment and no shortage so if anything at all over in Spain OK we  are on lockdown but can get to supermarkets and chemist when we need to 

    keep in touch and take care 

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Hazel was thinking of you today something on the news about sending all UK persons home because of all hotel closing.  Are you going to have to come back because of this or stay there until movement is once more allowed.  You could be stuck there for quite some time if this is the case.  Its all getting a little scary.  Had a letter through this morning for my mask to be made, same dy as my surgery and they are not answering the phones.  I spoke to someone who was going to pass on a message but not heard anything so guess I will have to try again tomorrow.  Typical isn't it they all want me on the same day.

    Anyway hope you are OK in Spain keep safe.

    Mo xx

  • I think Hazel has a long term rental so they should be ok. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • H xHi Mo thank you fir thinking about us   Yes Dani is tight we have s yearly rolling rental of an apartment so we are self sufficient. It’s better over here st the moment as no food shortages and we are only allowed out ine overdone to go to local supermarket. The apartment has all our stuff in it books cards games my knitting n crochet tv we’ve got 2 lsotois phonesc n iPads. Hope you get everything sorted typical for it all to happen st once’s it’s also sunny we’ve s roof terrace and balcony just can’t ride our bikes 

    just off to bed be in touch tomorrow 

    stay safe everyone 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Hazel

    Im sure they will let you out soon enough. This thing is set to roll along for a year I suspect. 
    One of my sis-in-laws is a nurse and she has just been tested after developing symptoms. With the hugest respect to folks undergoing treatment now that I am out of it I think I’d rather catch the bloom in’ thing and get it over with. I talked to prof Karol Sikora at The Rutherford yesterday, outlining my case, and he assured me that once you’re out of treatment and fit the virus poses no increased mortality. I didn’t have chemo though. 
    sigh!!!!!

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi Dani

    we are hoping to get back around mid May as planned ,don’t see pointed rushing back ok we are in lockdown but supermarkets well stocked and when it lifts we should still have a month in the sun .In meantime we’ve got lots to keep us amused and can sit in the sun with my factor 50 on of course. From whatbuve read in cancer U.K. site once we are 3 month post treatment even with chemo we are ok thus applies to head and neck patients who have had cisplatin. Know the bone and blood cancers are different ,so yes my thoughts are like yours as long as no underlying health considerations. Ok I have controlled high blood pressure mine is the calcium channel blocking version so that’s nit an under lying health one it’s been the people who are on the ace inhibitors that are vulnerable again what ivermectin read on n h s site. Hope your sister in law is ok .Iit is worrying for frontline staff 

    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Glad you are OK Hazel, keep safe.

    Just had my surgery for Wednesday cancelled but they have given me another slot for Friday 27th.  Just got to go with the flow, always thank everyone and appreciate what they are doing.  Its going to get even tougher I think.  More concerned about my lip which has now grown to 4.5cm x 3 cm in size and the Mask moulding is cancelled until 22nd April be lucky to have a face left at this rate lol.  Trust me to get ill in the middle of all this crises. 

    Walked the dog this morning as he was going a bit stir crazy and met an elderly gent also walking his dog, we obeyed social distancing and had a chat while the dogs were sniffing around.  Bless him he offered to come and walk Sherman for me while I am in hospital, there are some really lovely people out there and some absolute idiots.  Local website parents were talking about their kids meeting up in the parks next week etc can see that closing the schools may cause more spread.  Perhaps its just me but surely the idea is to keep social contact to a minimum but with everyone racing from shop to shop and kids meeting up I can see this escalating to be like Italy very shortly.  Anyway rant over for now.

    Keep safe everyone.

    Love Mo xx