New here! Hello, everyone!

Have  just  found  your  profile,  Kate.  What  a   brave  lady:  3 and  a  half  years  of  treatment and  now  in palliative.  You  seem  to  prefer   quality  of  life  over   quantity,  and  totally  respect  your decision  to  cease  treatment.  Once  I  get  my  first appointment  at  Urology,   and  actually  told  my  diagnosis,   and  I just  know  it  will  be  cancerous,  I'm  already  of  the  mindset  to  refuse  any  treatment  and   drafted    a   Living  Will  yesterday.    As  for  SAR1 -  request  to  see  scans  and  notes   - what a  kerfufful  that  is,  trying  to  open  NHS  Portal.  I'll  just  stick  to  the old  fashioned   pen  and  paper  and  phone  numbers  to  try  to  get  access  to  these.    Got  as  far  as  reading  that  there  has  been a  high  increase  in  such  requests...........  I should  imagine  this  is  nationwide,  but  I  wonder  why?  Maybe  more  patients suffering all  sorts  of  treatment  for  various  illnesses   are  taking  it  into  their  own hands  to  speed  things  up  administratively?  Hope other  people  find  this  info  useful.   It's  the  waiting  to  have  my  first  meeting  at  Urology  that  I  can't  stand!

Oh,   how, I envy  you  your  location: I like  remote   locations  and peace  and quiet,  Like  you,  Kate,    been  wanting  to sell  up  and  move, for  ages,  but  what  with all this,  have  to  stay  put,  as  you  do.

Your   acceptance  of  the  inevitable  is  so  serene:  I  don't  think  I  could  ever  take  3  and a  half  years   of  this.  I  am thinking,  do  nothing, let it   grow  and  spread,  and  go into  a  hospice  for  pain  control.  I'm  not  being  over-reactive  here,  but  have  other  illnesses  too,  and  I've  had  enough  of  hospitals,  uggh! 

Hope  you  get  this   email,   Kate.  Please  stay  in  touch -  :)

Hi Luciana

Thank you for your response! I don't think I'm brave, just rather fiesty and cantankerous!

Yes, my experience of cancer hasn't been 'typical', if there is such a thing. I consider myself very fortunate that I haven't had any obvious symptoms from the cancer....no pain or bleeding, for instance. What has caused problems for me have been the health conditions I've developed as a result of having treatment for the cancer. And, again, these other health conditions are fine, and don't cause any problems, for most of the time, so I am leading what I can only call a normal life. Less stamina than I used to have, but that may be simple ageing!

I know that this will change eventually, but for now it's OK. I don't plan ahead, or think about what's ahead of me....just concentrate on the present, as much as I can.

I have been pondering whether to risk chemo, if it is offered to me. I'd only try it with the support of an endocrine doctor who specialises in Adrenal Insufficiency....and these are very rare! I wouldn't feel safe being treated by my local hospitals, they haven't got the specialists I'd need. That is the drawback to living in a remote area!

As to obtaining your records....I requested some of mine. It was complicated, long and drawn out, and when they arrived, an awful lot had been redacted (blocked out) so weren't that useful. I hope you have more success than I did!

This early stage of waiting for appointments, treatment decisions etc. is the worst part of the whole cancer experience. Try to stay calm, if you can, and distract yourself, or at least occupy yourself with positive enjoyable activities. Worrying about it all doesn't help or alter the outcome!

best wishes

Kate

Hello  again -  thanks  for  the  friends  request.  Some  of  my  emails  are  simply  not  loading  though!!!!  Oh  well,  yes,  having  read  your  profile, noted  that  it  was  all  the  side  effects  that  effected  you  more.   Yes,  I  suppose  trying  to  find  an  Endocrine  dr local  to  you  must  be  more  difficult  that  living  in  a  major  city,  as  I do.    Still,  you  sound  very positive.  

I once   requested  my medical  records 15  years  ago -  I was  emigrating  at  the  time, to  Ireland,  so  thought  it  best  to  see  if  I  could  access  them.  I  was  surprised   just  how  easy  (  for  once!)  it  was.   Letter  and  proof  of  ID,  reason  and   Bob's  your  uncle,  a  huge  wad  of  paperwork  was  sent  within  the  week!  

It  seems  to have  become  digitalised  in  my  Health  Authority,  but  this  is  where  older  people  are  penalised  if  unable  to  fathom  things  out on  a  PC !!!   Doesn't  help  that    I  am using  a  very  old   and  decrepit   computer -  much  the  same  condition  I am  in!  ha, ha! .   I don't  even  use  the  NHS APP.   Just  as  well,  since  there  was  that  major  data  breach  years  ago!  

I'm  not  that  worried,  Kate:   more  cross  at  the poor  administration  across  the  board  I  have  had happen,  from  cancelled  GP's  appoitments,  when  this  may  have  been  picked  up  in  April   last  year,  to my  prescription  on  discharge  this  time  round ....... half  filled!  Ran  out!  Not  me,  the  Chemist's  supplies!!!!    ha,  ha!  And  this  from a  major  city  hospital!!!  As  for  the  rigmorole  getting   DNR  removed  from  my  notes -  still  on  hospital  records,  yet  I  changed  my  mind  years  ago  and  told  GP's  surgery  to  change  it  back  to  resussitation!  Great!  That  really  is a  cause  for  complaint,  don't  you  think?  I  could  go out,  have a  heart  attack,  and paramedics  would   not  shock  my  heart  back!!!!  I  won't  complain  though -  but  will  seek  reassurance  that  my  GP's notes  have  been  changed.  As  to  how  to  check the  correct procedure  is  on  the  hospital  notes -  how  to  do that - can't  trust  the dreadful  admin  team  at  my  practice  to  feed  it  through!!!!

I  shall  write   the  Practice  a letter   over  the  weekend -  btw, been  waiting  for a  call  from  GP,  only been  waiting  since  Monday!     Anyway,  enough  of  my  moaning!!!!

Well,  as  from  now,  shall   we  write  on  the  friends platform?  Be  a  little  more  private, methinks!    I don't  like  to  ask  you  private  details  on  this  public  domain,  or  say to  much  myself  and  my  conditions!

   Can  you  email  first,  since my PC  and  this  site  do  not  seem to  be  that  compatible!!!!!  I  stay  on  line  24/7,   btw,  since  already  lost  my  password-  yes,  I  know,  DOH!!!!     I like  to  reply to  all  kind  enough  to  write  asap,  but  not  actually  live  on  here all  the  time! 

Off out  now,  get  some  food  shopping  and  soak  up  a  bit  of  Vit  D - sunny  down  here!  How's  the  weather  up  in  bonny  Scotland?  

OK,  catch  you  later  and   why don't  you  do  some  more  research on  Adrenals  and  chemo -  though  you seem  very clued  up  anyway!  How  far  is  the  nearest  major  hospital  from  you  then?   Surely, Scottish  Health  Authority  would  refer  you  to an  Endocrine  specialist,  in one  of  the  big  cities  up  there, even  though  it  might  be  a  bit  of a  drive?    

OK,  off out  now -  if   you  don't hear  from me  again, I've  probably had a  heart  attack  in  Tescos  and  dead as a  dodo,  what  with the  wrong  info  about  DNR!  You know, they  let  me out  on the  16th,   with 'dangerously  high'  BP!!!!!    Unbelievable!!!!

One  has  to  keep  a  sense  of  humour,  about  it all though!  You all know  my  age: I remind  myself  that  at  63,  and  with all  my other  illnesses,  I shouldnn't feel  sorry  for  myself, when  there  are  little  kiddies taken  too  soon  by this  cruel  disease.  

I'm  rewriting  my  will:  donation  to Great  Ormond's  Street,  the  Endometriosis  Society,  and  other  non-profitable charities  such  as  MacMillan.   I don't  think  my  humble  Estate  when  I pop  my  clogs  would   run  to  buying  an MRI  machine  though!!!!   They  are  great  those  things!  Modern   technology  at  it's  best!

Bye  for  now :)

Dear  TillyV, Kate,  Maite and Quinn  those  who  have  taken  the  time  and  trouble  to  email  me.  Many  thanks.

Got  your  private  email  address Kate,   thanks  for  that,  wrote  it  down,   but  won't  use  it.   Been  on here  since  Monday,  but   emails  are  disappearing,  despite my being  nothing  but  supportive  to  others  on here and  making  new  friends.    Systems  issues?     I don't  know,  but  going  to take  a  week off  from this  site.  Got  so many letters  to  write, of  a  very  important  nature,  to  various  bodies associated  with  the  NHS.  Yes, did  see your email,  Kate,   - Hello??? -  sent   sometime  yesterday  afternoon -  when  I  got  back  from  shopping - that  seems  to  have  disappeared  too!  

Anyway,  taking  the weekend  off  from  this  site.  Be  back  sometime  next  week.    Can't   pin  point  a  particular  day,  since  feeling  very  rough  physically  again  and  must  get  these  letters  wriitten!! 

But  'I'll  be  back' -  said in  best   Arnie  voice!!!  ha  ha, 

Meanwhile,  take care  everyone   and  thanks again,  :)

Take care. X