Drowning in beurocracy

This is absolutely appalling!!

I think my next move would be the press if I'm honest.

I've got a gob on me. Not in a rough way but I don't ask anymore, I tell. It's the only way you're going togetbwhat you want.

I'd be in the hospital screaming my head off if I were you and I literally mean, shouting so everyone can hear. I'm not scared of anything and that has come from being messed about to the point where my doctors negligence and not wanting to bother with me, made me paraplegic and in 24/7 pain for life. I refuse to be treated as a nobody ever again.

I wish you all the love and luck in the world. Xxx

Hi ParaArcher

Thanks for the reply  its lonely out here

 Yesterday they held another MDT meeting At Queens

 They admitted that they had mucked up  as I had no Oncologist

 So they appointed one  who went on holiday last night, As there is only one at the hospital they are getting a stand in on Monday

They tell me they will phone me Monday

 The only thing that has come out of the meeting is that I am inoperable

 We have papers involved  and my MP has broken his holiday to get involved

My GP has reported them  and there is a n investigation  at Queens  by the Clinical Director but its tick  tick  goes the clock 

You take care as well xx

Hi ParaArcher

 Well  
Last Thursday whilst doing battle on the telephone with the Chief Executive  who should walk into his office but the Regional Cancer Executive (this was around 3.30 pm)

 Thirty minutes later  the lady was on the telephone to me  to say she had called for all my notes by 5pm that day

 At 1o am on Friday the lady telephoned  back, I had a meeting at Addenbrooks with the Cancer specialist nurse in Neurology   for yesterday

 When I arrived it had changed , not the nurse but the head of Neurological surgery

 We spent an hour together  , the result being the brain operation will take place as soon as possible after preop and CT mapping however before the bank holiday weekend

 All the rubbish that queens have given me was contradicted at the meeting although we tried to focus on the actual need

 The statement Inoperable  was now straight choice operation to remove the tumour so no brainer (excuse the pun)

The trust will be holding a full investigation. This does however seem to be a total failure of regionalization

 However  I now see the beginning of the light

Hi all

 I am now six weeks past the brain op. Just for inforrmation  whilst the trust was fiddling about the tumour  doubled in size

 I was out of hospital in 3 days 

 Next week  I am six weeks out from the brain op  and will have the lug tumour removed

 An interesting  point came up in my per op conversation with the nurse 

The surgeon  had  seen 4 old blighters  at surgery with me   and I was the only one he would operate on  due to my attitude and  determination

 Moral of the story  never give up

hi  all

 Been busy  reorgnizing   Hospital  and  treatment  plan  after the debacle with the Oncologists at Queens Kings Lynn

 For those of you who need a refresher  since  June this has been  fight againt missmanagement  of my cancer   and lack of communication  since my seizure in June

 Some  six weeks  ago  my GP  asked  the Oncologist to send me forr  a brain scan   as  I had reported to both the GP and the Oncologist  that  an area of my left leg had gone numb. The oncologist had dismissed it as nothing , however the GP was concerned 

 After a week passed  and no booking  the GP sent a curt letteer to the Oncologist  who promptly booked    a CT  just to find th brain tumour had reurned 

 I was placeed back on  Steroids  , double dosee  and he  booked  an immediate MRI however he forgot  I was only 4 weeks post op frrom the lung tumour

 Fortunatetly I had had  a discussion with the Radiologist  and had made her  aware of the operation 

 On checking with  Norfolk and Norwich University Hopital  who carried out th op  she found I had metal clips in my lung  whicch may have dislodged and would have torn my lung open  the result  i would not like to contemplate

 I waited  for the six week healing process   then  the  MRI was  safe to proceed 

 Only trouble  the Oncologist  hd booked the wrong type  of scan  so  the MRI had to be redone the  next  day with the dye test

 Which by the way  i could not have had the first day as they had rrun out of dye

 I was  having some problem  with breathing due to the steroids  so whilst  I was erly for the second MRI  I poppd in to see the Oncologists   and  the  doctor who saw me poo pooed the suggestion that the steroids were causing  the breathing probem even though I had carefully  reserched  the Hide effects

 he waanted to stop the MRI  take blood,do an ECG  an  god knows  what . . I walked out  and went to have the  scan

 I had  in the mean time developed  a conversatoin  with  Addenbrookss  Hospital that hd removed the brian tumour  after the ten week debacle back in June and it ws suggested to me that  aI ask for  a referal  from my GP for  a second opinpion

 which was requested  the very next day.

 In th mean time  Addenbrooks had booked an MDT meeting  for the very next day to  discuss the MRI result 

 I was told the scan result would be there  for the nine  am meeting  Kings failedd to send  it so the meeting was posponed for  a week

 Ber in mind I bave an aggresive toumur  which doubles in size every eight  weeks  and had already grown to   a centimetre  whilst  I understandably waited for the lung healing process

 I have sacked the ONcologist at Queens  for my own  safety

 The MDT  at Addennbrooks  took place  Last Thursday  and  I was requested to  attend a  meeting wtih the Neurologicl  Radiologist   on the monday by telephone

 After seeing him   I was immediately given  an appointment to have  a type of steriotactic  surgery   and returned to Addenbrooks yesterday tto have  an MRI   a  positioning mask and  a CT to  mark the tumour to be zapped

What  a difference in treaatment and care

 On 11tth ,13th,  and 15tth  I hve the radiology  to kill it

 I also now have  a new Oncolologist   at Addenbrooks a  Collorectal Oncologist who will take over my care from the 19th of this month

 So the moral of the story   . Stay in control yyourselves  , make sure that  the  doctors that are treating you  are  acually  in control of all the  facts 

 Make sure you pick the right hospital

 Anyway I will  stay srong  and vigilent  , I will never give up this fight

 PMA   and good luck to you all