HAS ANYONE OUTLASTED THEIR PROGNOSIS Cont'd!

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I have spent almost 2 hours on and off trying to reply to the current Post. In red it told me I did not have permission to reply to this, so I'm doing it here.

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Hi Lynne_1961, DB61 and ALL, Welcome to the Group! Well, I think I am probably one of the group's 'oldest' (as in been here a long time) members. There are quite a few of us around! I was given 5-7 months to live in May 2013 when diagnosed with Malignant Melanoma Stage4. So obviously no one knows when you reach your sell by date! As you see I am well passed mine! The first time I was told I had cancer was the end of 2010 when I had a lesion on my shin, had a biopsy and they found it was 98% cancerous Melanoma. They did a Wide Excision March 2011 (down to the bone) I call it my shark bite, it anyone asks what happened! The surgeon was SURE he had got all the cancer. However while I was still attending his clinic for 6 monthly checks, in November 2012, he found 2 further tumours in my thigh. I had a groin dissection but the PET scan in May showed further mm.

I have defied fate, yet again this year when my oncologist said how important it was for me to self isolate as I have little or no immune system left to fight the COVID-19 virus. I had been at home for longer than 9 weeks then my husband and I became unwell. We got tested and BOTH had positive results for coronavirus. Well, I have some Post Virus Syndrome left over, in the form of Labyrinthitis BUT I'm still here! Never give up! Where there's Life there's Hope!

Every year they are coming up with new drugs and treatment, so odds are the longer we are here the more likelihood they will find something that will work for us!

  • Blimey that’s quite an amount of time to outlive the prognosis! Excellent, that’s amazing!. I was told ‘6months’ at the end of September so I’m not there yet, and probably the last 3 times I have seen my consultant he has hardly been able to conceal his delight at how well I look compared to what the scans show!. I wonder how it goes with regards to benefits though? I have a DS1500 which states I have less than a year to live. This means I can retire on ill health grounds so I get paid more, and also my PIP is the higher level. Will it all go down again if that year passes and I’m still alive?

  • Hello Lellynelly.

    I think the consultants in general like to keep us alive as it makes their figures look good, not sure if bonuses are involved!

    You have been through the mill I know but let the government keep their benefits and stay alive for all of us please.

    Xxxx 

  • Hi Lellynelly. Regarding the DS1500 I have looked into this before, and no your payments do not go down if you pass the 12 months, so you have no worry's about proving them wrong. 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • Lellynelly

    don’t worry about the ds1500, you will be able to renew under the same rules if things are the same.  Its not that you’re going to die but doctors would not be surprised if you did.  I have renewed mine about 4 times!   It was a little harder last time as i had a phone interview.  Just tell the truth!

  • Hi Lellynelly, it is strange the mixed feelings you get about being happy to be alive and worrying about benefits. I do the same all the time. I tell myself it’s better to be here with less money, doesn’t stop me worrying though. 
    I can’t believe how long some people have passed their sell by date, their stories certainly give me hope, I hope they do for you too. 

    stay strong,stay safe

  • I've never been given a "Use By" date, but was diagnosed back in February 2019 with Stage IV Metastasis Pulmonary Adenocarcinoma - basically incurable lung cancer. Didn't expect to be around this long, but I'll take all I can

    Per Ardua Ad Astra
  • Hello John Boy2. I am sure you will be on the winning side for plenty of time yet. I say that based on the experience of plenty of people on here including myself. The longer you are around the better the chance of something coming up, a new treatment or a trial. Good luck.

  • Hi 

    Good to see your name again and I'm pleased to know that you're still around and may you still check in from time to time.so we know that you are still in our company. To know that gives me a boost as well as others I'm sure John Boy.

    Tvman

    Love life and family.
  • FormerMember
    FormerMember in reply to tvman

    Couldn't agree more tvman - knowing that various peeps are still around is defo a boost and often a relief...

    Perhaps we could develop some kind of weekly register? Just an idea...

    SiT