2 years

2 minute read time.

Dad has just called me to say he has been told he had 2 years to live.  I am determined to help him beat the ticking time-bomb!!  xxx

His story so far....

My dad is living with a brain tumour which until very recently was thought  to be benign.  It is now asuumed to be a higher grade.  Today he is meeting Dr Matt Grffin at Nottingham City to discuss radiotherapy.  Everything seems very scary at the moment.... 

My father lives in Mansfield and I live in Southampton so its tough being so far away.

How my jounrey began:   August 2008 my mum and dad visited me in sunny Southampton.  The reason for the visit was to celebrate dad retiring at 65.  That evening we had a few beers and a Chinese meal.   A few hours later we were all tucked up in bed dreaming of the good life when I was awoken by my screaming mum.  Dad was having his first ever seizure.  We thought he was dying, a heart attack, maybe a stroke.  The paramedics took him to the general hospital and I thought I would never see him again.  A few hours later me, mum and dad were back at home - bizarre.  The docs had told him everyone can have 1 fit, put it down to stress, over -heating!! Phew thank god!

A week later they went back to Mansfield, Nottinghamshire (my home town) and dad has another fit.  Now we start to worry. 

Anyway long story short he gets diagnosed with a slow growing benign tumour.  Surveilence scans are prescribed and we as a family learn to live with the news. 

The following year a scan shows some growth, a needle biospy is suggested.  The biopsy results show a grade 2 right frontal lobe tumour, probably a astrocytoma.  Again survelience scans are suggested, next one Feb 2009.  Great 6 months of life without any interventions.

Just after Xmas dad gets his licence back and we really feel like we have turned a corner.  In Feb goes for his scan and the wait begins for a follow-up.  In the mean-time me and my partner buy my dad a little Yaris and drive it up.  Dad was over the moon.  The freedom and independance he craved to cope with the devastation caused by the tumour didn't last long.  He recevied a call from his Consultant, Donald MacArthur at QMC Nottingham to say he needed to come in for a chat.  3 days later he is told the tumour is growing and that radiotherapy is needed.

 

Anonymous
  • FormerMember
    FormerMember

    For an astrocytoma; based on the neurosurgeon at southampton, 2 years is considered a worst case life expectance, meadia is somewhere between 5 and 10, Median being the middleish part of a distribution taken from a recent study, 25 years was the best cas life expectancy (this is info I have told to me on the last three visits to Southampton Hospital, by three different people working in the field) it was a large study to confirm or otherwise the benefits of radiotharapy) but those who did not have treatement had a worsening quality of life for not electing to have treatment

    a) at all

    b) delaying radiotherapy and waiting for inceased number of fit's,  

    Anyway I have an Astrocytoma and today I talked to the Onchologist about radio Therapy, and elected to go ahead, badsed on the information I'd been told from the study, and not wanting to have more fits to trigger the need for treatment were my reasons, but the fact remains,

    1) They do know what happens the tumour when radiated,

    2) They can not guarantee to get it all,

    3) It can change into a higher grade Astrocytoma.

    4) It is treatable with radiotherapy,

    If it comes back then there may be a slim chance for more radiotherapy, other treatments will have to be concidered. and for me all thet is in the future. such as chemo, but this is not needed now

    I am going to have the radiotherapy, listen to the output from the MRI scans through treatement, (and an astrocytoma is considered slow growing, so initial gene mutation may take a while to show signs and indicate progress of the radiotherapy). there will be lots of monitoring of progress, where they target is also not an exact science, The MRI scans won't show it all...

    I look at it one way, they are gonna get it all and i live for another 25 years minimum.

    If you or you dad has not been told about thestudy (or your dad is hearing only parts of the discussion, easy to do when you living with a time bomb in your head and it's happening to you! you may only hear worst case stuff, not the upside)

    Honestly I have just had that kind of discussion with my wife, who said that we have obviously heard two different things each time we went to visin the consultant, neurosergon, and onchologist, But on no single visit did anyone of the specialists say I was only going to survive 2 years...

    The tumour I have is huge, It started with a fit on the14th, I have had no other symptoms since, that would cause me to stop working full time (bar the Biopsy for 2-weeks sick leave, then I gave one back and took second week as Holiday).

    Maybe you should try and get your dad to tell yo exactly what he has been told on life expectency, ask if the study was mentioned in the discussion.

    Oh and I was told everyone has the potential to have a fit in their life, i was sent for MRI scan, and they found this massive growth, The consultant did not want to show me the blooming thing, I think he was not expecting to see anything so big

    That's by the by, the Onchologist I saw today said, if you have a fit and your over 40, you really want to know why....

    need to dig your self out of the doom and gloom, I had a very positive day, no new information, no false hope, no hero solutions, a high degree in the confidence of the people i've bee talking too , and my wife who has heard all the same stuu I have pointing out that maybe i've been looking on the negatives too much....

    I'm no doctor, or expert, but I've been told some stuff consistently by a group of people on my treatment radar, and i have a lot of hope I going to live longer than most people I work with (Who are all 20 years older - joking!)

  • Sad and Always a shame these people vanish and their story is never ongoing