Unluckiest person alive

FormerMember
FormerMember
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Hi all, it's me again....read my profile, make sure you grab a cuppa first! 6 months from auto sct....complete remission 3.12.19.  Having my first vaccinations on Friday. Slow recovery. Severe pain in foot and down sciatic nerve. MRI 2 weeks ago......guess what?

There's something attached to the sciatic nerve in my thigh above the knee.

Need pet scan to check for any other masses which may be easier to biopsy.....bearing in mind the last biopsy caused foot drop. Life will not be worth living if I lose control of my knee. Trying very hard to stay in the moment and not think the worst. CART at Cambridge

A subdued and very tearful haffy xx

  • Oh Lynda, first no words but some ((hugs))

    I have everything crossed for a positive way to be found for you xx

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Oh no, Lynda! I’m gutted for you, but I hope there’s a way forward 

    sending hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to moomy

    Hi all, pet showed lymphoma below and above where I had radiotherapy last year. It's in the nerve sheath of the sciatic nerve just above my knee. Have to have a biopsy by a neurosurgeon in London, consultation on the 16th, to be eligible for car-t at addenbrookes. In between I'm lucky enough to have my 4th lot of chemo....likely IVE. I'm so fed up of being sick, bald and disabled with a gammy painful leg (i did suggest amputation)

    I'm fairly inconsolable at the moment with very dark thoughts.

    Thank you for listening

    Lxx

  • Oh dear, , that really sounds so very painful..... hang on in there, hopefully it can be helped.

    sending hugs xxx

    Moomy

  • Lynda, I often think about you. You are on such an unlucky streak so you do need a positive break ASAP, let’s look for this to happen for you quickly.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • FormerMember
    FormerMember in reply to Thehighlander

    Hi, all of you good people out there, we're all coping with our own demons and for many that can't see family, have no employment, hobbies or poor mental health, dementia, victims of abuse, carers and essential workers, etc etc....I have special empathy. I've been pretty much in lockdown since my sct (failed)  now since August 19 with my husband and dog at a home ( big enclosed garden and lots of maintenance and stuff to keep hubby motivated.)

    I'm waiting for results of my biopsy behind my knee. London hospital fitted in in on first day of lockdown...27/3...London was very busy! Waiting for phone call next wednesday from my team.

    Am not expecting much, I'm afraid. This is going to set a lot of people back and will be the death knell of many

    Already hearing of domestic violence and suicides

    But pollution is better and essential workers are getting to work quicker and neighbours are looking out for each other XXX

    Sad times

    Haffxxx

  • FormerMember
    FormerMember in reply to FormerMember

    Wishing you and yours all the best, I had my SCT beginning of December, getting my results from the 100 day PET scan on Monday. Although we are nervous about the results as everyone is, the good side is that I have my family with me every day so the isolation carried on but with people. 

    There has to be a bright side to everything, look up and forward. 

    Big hugs, all the best.

    Brew x

  • Thinking of you both as you face results, and hoping they are not all bad. 

    Yes I too have heard all the positive sides of this lockdown, that the world is being enabled to recover a bit. Dolphins in the Venice canals, air quality in places in China so much better. I hope that when this all eases we won’t go immediately back to trying to kill our planet again, though fear memories will be too short.....

    Please try not to watch or listen to too much news, it is, after all, pretty depressing at present!

    Hugs to you all xxx

    Moomy

  • Hi Lynda and Brew, it’s hard enough to focus on looking for good results and then a positive route through the storm but we have another cyclone raging around our little cocoons. Head down and keep on fighting and yes Lynda - another day survived.

    I read this phrase yesterday “.....in the middle of the storm try to re-centre my scattered senses upon the good” take from that what you will.

    For me it is seeing life as small daily steps, some rather simple and some just a struggle and yes they are others having a much harder time than us all but it’s getting the mind to accept it and put it into prospective.

    I am loving not having the sound of jets fly into the airport.

    Stay safe.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge