Squamous cell carcinoma in neck, spreading to ear

Former Member over 3 years ago

10 replies
154 subscribers
942 views

Hello. I spoke to some of you good people before Christmas when I was first diagnosed with cancer but until yesterday I had no clear treatment plan. Yesterday I got that and it's radiotherapy only to shrink the tumour but not get rid of it. I've been told I have months or up to two years if I'm fortunate. I'm currently in hospital having my eye treated as it became infected owing to not shutting because of the facial paralysis. I am so sad to think of leaving my family. I don't know how to cope

Beesuit over 3 years ago

Hi AnnaMary. So sorry to read your news. We live with this fear all the time so mine are not just words. I really am truly sorry.
There is a group here in Macmillan for people living with incurable cancer. You might find joining them some help

Living with incurable cancer forum - patients only

I hope you find some peace and time to build memories with your family

Hugs

Dani

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

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

Catmarel over 3 years ago

I'm so sorry to hear this. There is a forum here called Living with incurable cancer. It's strictly for people like us with a 'sell by date'

Everyone on there are lovely and so supportive, we are in the same boat on there so they will know what you are going through.

Don't forget the Macmillian also have a support line,

Cat x

Former Member over 3 years ago in reply to Beesuit

Thank you. Although I knew this was a possible diagnosis, it feels unreal. I will check out the site you recommend. I hope you are well.

Former Member over 3 years ago in reply to Catmarel

Thank you. I only found out yesterday so I'm still in denial. I will find the site you mention. Keep well

Alfienangel over 3 years ago

Everybody's nightmare. My heart goes out to you and your family. There are no words just be kind to yourself and enjoy every minute. Thinking and praying for you. X

Former Member over 3 years ago in reply to Alfienangel

Thanks. It is a nightmare but I hope the radiotherapy will help for a while. Take care.

old biker over 3 years ago

So sorry to hear your news, you and your family are in my thoughts.

Former Member over 3 years ago in reply to old biker

Thank you. I'm still coming to terms with everything

RadioactiveRaz over 3 years ago

Hi AnnaMary So sorry to hear your news. Hopefully the radiotherapy can give you longer to make memories with your family. Hoping you aren’t too long in hospital.
if you have a Maggie s centre near you they are very good.
https://www.maggies.org/

hugs Hazel x

Hazel aka RadioactiveRaz 35 radiotherapy and 2 chemo 3 rd cancelled. HPV tonsil cancer 7 lymph nodes. 8 years post treatment living a great life.
No questions too daft to ask.

I’m also an ambassador for https://oraclehnc.org.uk/

A leading head and neck cancer charity.

This is a link to a webinar i did with Oracle explaining the process of diagnosis.

https://oraclehnc.org.uk/oracle-launches-new-webinar-series-to-support-head-neck-cancer-patients

Beesuit over 3 years ago

Hi AnnaMary. I've just been tagged in a reply to your post in the incurable cancer forum. It's got me thinking. Would you perhaps think about getting a second opinion from maybe The Christie or The Royal Marsden, maybe even about a trial? They wouldn't need to see you, they could just look at your notes in the first instance?

Dani

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

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

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Squamous cell carcinoma in neck, spreading to ear