Angry

Some times i don't know what level im at as this can range from being OK which is where I just get on with it which is my normal or mildly crap (for people who do not have to deal with what we deal with every day would feel like death,"lucky them"). My Gp i have no problem with infact we get on really well she is learning more about how the brain works from me which i like as she is getting closer and we can joke about things.

Early 2010 i came of my first and so far only coarse of Chemo Temozolominde and i went to see her about another but connected matter she asked how i was my reaply was onist if somewhat direct,

"I feel a bit Fucked" i said. she leaned to wards me and replied, Martin you are a bit fucked for me far better than having a dismissive IT WILL PASS... I left the QE, a few days after my Biopsy 21-7-09 it was agreed that i could be told over the phone no matter what the news was as apart from a realy bad head i was not ill and i live in the small town of Llanyllin. i Mid Wales.   

But  i left  with a new problem A Brain Injury i was not told this until March 2011 at QE. by Proff.

I kind of new something was wrong when i awoke the morning after the Biopsy my Gp had said there was some injury months prior to this.   And it is this where i have all my problems with the Profesionals..

The Oncologist at RSH phoned me at home March 2010 with a happy sounding voice and told me with great confidence that it would not be long before i was reapplying for my drivers license, that's (mths after i knew it had gone for good (i had it revoked Nov 1st 08) i was so hurt by what he had just told me, with my mind racing i unable to tell him what i thought and with a shaking hand i put the phone down..

Thing which patients notes was he reading from !??.  I had an appointment with him on the 2ndDec i called to see why he he wanted to see me? the No. i called was Radio Theripey (no one has told me about this !!! i said), im told its a follow up FOLLOW UP WHAT FOLLOW UP ?? 

Ok lets go back 6mths and my last MRI and it's good no change my next MRI is the 21st of December so why the feck am i having the follow up first !!!. its not the first time iv had to cancel an appointment with him and when i do see him he smiles and tells me "That my case is complex". he was lucky that there was a student there as i told to just deal with "your bit don't worry your self about all the other stuff then it's not complex is it" i got up and left before he could reply.

in the past iv had to get all my note sent from both the Queen Elizabeth and Royal Shrewsbury sent to me so i could pass them on to my Gp as she was in the dark also photo copied it all and sent it back to the alternet Hospitals.

This Oncologist keeps putting his finger in other peoples pie's !! as in cancelling an appointment that i had made with the Opthomologist at Shrewsbury as i was seeing a Nuero Opthy whatsit ast Sely Oak only that had been changed to Shrewsbury ANGRY IS NOT THE WORD FOR IT no body had told me about this WHY DO I THE PATIENT have to do this.

I now have Seizures following the Biopsy which are Epelepiform in nature these can be very traumatic and full recovery can take many weeks.  I carry a letter from my Gp that explains what is wrong with me ie;

Mr Lenton has a Grade 2. Oligodendoroglioma.  This is in his Occipital lobe. While the Tumour is not causing a huge problem, the Biopsy caused Occipital Lobe damage.  He has visual hallucination and loss of sight in that he can recognise and see shapes/colours but can not process them he also has neglects his left arm and leg ... But instead of reading this at RSH they discharge me one time they even called the Police this was 23.00 and i live on my own. but talking with the Officer the next day he told me that on attending A&E he found a patient who was frightened and not being listened to by any of the hospital staff and that i had no blame. iv been Shouted at by Doctors man handled physicly and verbly abussed many times, even infront of my Social worker only they thought she was just a friend OOPS they have got my meds wrong on two occasions and they have lied to the Ombudsman  am i angry OH YES   

Im sorry about going on just a bit but Pac-Man my Space invader my Tumour is only part of my illness the Brain injury and what goes with that is the main problem.  I used to work with young adults with Autism in a home some had Seizures so when i now have them i know what is happening and to a point can deal with it i no longer work because of my vision although my sight is good

I have to deal with the stress of my medical issue which is not helped by some Hospital staff and in fact is the biggest cause of my stress

May your God or what ever it is Go with you.....

Thanks everyone for your comments and hugs XX - I am over my wobble (for the moment)

Martin, gosh you are having a bad time of it - no wonder you are stressed. I am glad the police Officer was more reassuring.

Your treatment at A&E is completely unacceptable.

I don't know if this will help - but our GP asked us if we agreed to make my husbands medical records available to NHS24 - so if anything happens all his records are available to medical staff.

Perhaps you could ask your GP if this is possible for you? 

XX