Hi anyone got any experience of this? Recently (Last week) advised I have this and there is basically nothing to be done. Seems to be very little info and certainly nothing positive.
You have my deepest sympathy. This is a very tough diagnosis to take but at least it's clear where you stand with the doctors.
On the one hand, it's terrible to be told there is no treatment. If you can be a glass half-full type of person, see that as a good thing. When treatment is offered for Anaplastic, it's horrible. If it wouldn't work, it would be a terrible shame to put yourself through such a thing.
My only advice would be to live in the moment, tell the people you love that you love them, bury any historic resentments and squeeze the best out of every day.
If you feel up to it, take the time to put your affairs in order and then do everything you enjoy especially the things you don't always let yourself - drink the extra beer, eat chips every day if you want to, use the expensive bubble bath and enjoy the things you were saving up for later. Most of all, stop to smell all of the roses along your way.
I wish you all the best for the tough times ahead.
Best wishes
Barbara
“Scars are tattoos with better stories.” – Anonymous
I was diagnosed with this and told roughly the same thing last week but I have been offered radiotherapy to try and stop it spreading.
After an initial period of shock and extreme anxiety I decided not to accept that the medical profession know exactly how things will pan out.
I have met many inspiring positive thinkers who have come through cancer including 'incurable' ones or know people who have. They have given me ideas on how to take control of my pathway .
I believe in the power of the mind and positive thinking helping the body to heal and also adjusting diet to give yourself the best chance possible to get through this.
I am trying virtually anything - mindfulness, visualizations, meditation, a psychoanalyst healer, alternative therapies
Been recommended lots of books to read which I will post later.
Make a list of the things that make you happy and do them as often as you can. Keep distracting yourself (binge watching Netflix worked for me) But also tell yourself it's ok to be down sometimes. None of us can be strong all the time.
I know it might not work out but I'm going to give it my best shot. I don't want to live in fear and sadness for the rest of my life , however long it might be. It doesn't help us or those around us .
im so sorry, my mum was diagnosed with this in July, she was given ten treatments of radiotherapy, which seemed to have worked you could clearly see a difference in her neck, she was told it wasn’t curable and inoperable, she’s seemed so well after the radiotherapy, she was on steroids for a long time, her feet were swollen and stopped draining back then left went down and right swelled more and her arm, phoned MacMillan for advice she advised me to phone Weston park they called a ambulance, mum’s red blood cells low so had blood transfusion, possible DVT, fluid on her lungs but couldn’t treat as on blood thinners for DVT, her breathing just kept getting worse, she passed away 12th September,
please make the most of your time, we thought we had more time with mum, she only wanted two things to see the polar bears and go to her favourite bird hide, she was taken before we could do any. Mum was so positive she was a fighter xx
So sorry to hear about your mum @Trace11 I was following your posts when you first told us she had been diagnosed. It's dreadful losing a parent, I lost mine to DVT when I was 30, the year before I had her first grandchild and it is always there even though it is 37 years ago now. She had breast cancer and had a mastectomy followed by 2 further surgeries as it kept coming back. Sadly 2 weeks later she died from a thrombosis whilst at home. Take comfort in your mum not suffering and think about the good times you had together x
Well it’s been a roller coaster few weeks. was offered radical surgery but when the updated scan was done this became unviable as the tumour spread into the pre-vertebral space and almost completely surrounds the carotid artery, along with other structures.
niw starting chemo & radiotherapy on Tuesday to try slow things down. One positive is managed to organise a wedding in 72 hours even if the honeymoon has been over several days punctuated by CT, MRI & PET-CT scans….!
Thank you petal66, I haven’t been able to update my post yet, I saw Dave had the same and needed to tell him to make the most of the time, do it now don’t put it off xx
So sorry to hear of your recent diagnosis @Dave H and hope the chemotherapy & radiotherapy helps you x Congratulations however on your wedding, I am presuming it is you who got married.
