Blog update 3-8-24 Manchester Royal Infirmary Appointments 25-7-24 and 1-8 24

Hello everyone , yes here I am back again , so much has been happening that I have waited to update the Blog , only after Thursday can I really do it.

After being referred to the ENT Dept  at the MRI I attended on the 25 th July , I wont bore you with the pre amble of being left alone !! in an examination room for over 2 hours !!                                                        When eventually the door opened in walks Abdullah and  my MacMillan Nurse   Ruth ( A VERY LOOSE DESCRIPTION OF MY NURSE ! ) Abdullah apologises for delay and starts to talk to me , I because I am very annoyed and Pissed off with things stop him and request to Speak first ? he agrees .                              I tell him that I want Honesty ( which has been sadly lacking of late ! ) I am confused at Conflicting Information  , Nervous and to be Honest I am Scared !!  Abdullah says that the planned Surgery is quite Major Surgery of a Neck Dissection , I ask what is that and start to ask some questions ? He starts to explain then says he just needs to  leave the room   , and off he goes , a few minutes later another Consultant walks into the room and introduces himself as Mr Mani , and I ask and who are you ? he replies I am your Consultant !! , so I ask who was Abdullah ? he replies one of my Team ,I say my appointment is supposed to be with Miss Suzi Penney  where is she ? not here was the response  ," so I have just wasted another 20 minutes asking questions and You are going to start all over again ? , you can imagine I am pretty naffed off at this Circus !!                                                       So My Mani starts to explain and again I ask the same questions and he starts to explain the Dissection      Surgery  , he asks if he can examine my neck ? obvious answer is  yes , he puts some gloves on and examines my Neck and says there is nothing apparent  to feel , he then places His Index fingers behind my ears and says we start with 2 J cuts from behind the ears ,and moves his fingers down my Neck to below my chin , ( you can imagine my thoughts on that ! ) and we then go in and remove " ALL "  the Lymph Nodes in the Neck Area !, ( sounds wonderful doesnt it ) Ands thats it really he says , very simplistically , it is Major Surgery  and you will be in Hospital for 6/7 days !!                                                                                                                                                                So I gather myself together after hearing that and start to ask questions when Mr Mani suggest we go to Another Examination Room , so off we Paddle to another   room where we find my friend Abdullah and another Consultant by the name of Tony who is working at his computer plus Ruth of course , Mr Mani sits me in the Captains Chair and starts  up an Ultra Sound Machine and then Proceeds to Scan my Neck  while discussing ME with Tony and Abdullah ( it went something like this )                                                                                                                                                                  Tony  " Well I would do the left side first ! its more complicated there because of the Various Nerve Connections to Shoulder and other things and also the Jugular Veins  , then let him recover and do the Other side !! "                                              Abdullah , "  well I would do the right one first , easiest one less complications on that side potential quicker recovery for the next one   "                                                                                        Mr Mani " I would both at same time , less risk only 1 surgery  , but same risks of Nerve Damage and Longer recovery "                                                                                                                                At this point I interrupt  , excuse me gentlemen I am HERE ! can you please talk to me ? and my Option if taken would be Mr Mani , because you wouldnt get me back for a Second One !!              Then we went into Questions and Answers  Session which were lengthy   and from myself Heated !!! There are very serious potential affects of this Surgery which no one disputes , Possible Shoulder and Neck Nerves issues , could result in being unable to dress myself and unable to drive due to reduced Neck movement ,  Issues with Tongue and Jaw control due to Nerve Damage , Eating , Drinking , Swallowing issues , potentially Permanent !! and the need to be Tube Fed !! and Gastric Tube inserted !!                                                                                                                      ( this definately  Did not appeal to me because I had been there after the Therapy and still Have issues .There were other issues  but I wont go  there , I told them I was totally against their Option and I would  need to think and come back in a week.                                                                               The main struggle for me is that I have in writing that the Nodes over 2 Scans show "Ongoing Reduction " , why do any Surgery when Reduction may Continue  ? , their answer " it may get worse " , my response but there is no evidence of that over the last 17 weeks !! ? I want another Scan before any  decision is made !!                                                                                                                    It is now 5-15 and I have been here over 4 hours and we are going nowhere so let call it a day I will return next week ,  NOW  DECIDE TO HAND ME A BOOKLET entitled Neck Dissection Your Operation Explained  !! ? now I was annoyed and Said " why was I not given this earlier  while I sat Waiting for over 2 hours   ????       they seemed surprised ,I left at 5-20 pm.   

Part 2  1-8-24   MRI 

 So I arrive early as normal and    very quickly called in to an examination room and sit and wait , pretty quickly an entourage enters the room Abdullah from last week Ruth my MacMillan Nurse , another Nurse and a Lady in shorts T shirt and Trainers  and as I have her  comfy chair she goes for the Patients chairs plonks herself down crosses her legs and says " right where are we up to ? " With a smile on her face ," I say can I  assume that your Miss Penney ? she smiles back and says "yes but you can call me Suzi ", amazing how relaxed this Lady has made me feel already I say that I have compliments to pass to her from someone , she asks who and A Mr TONY STANTON  ,she thinks for a moment then smiles ,yes she does remember and we have a little chat which was really nice and then   I hand her and Abdullah a letter that I had prepared   in answer to last weeks interview , she reads and says " I get it , I understand where you are coming from " , ( I HAD DECLINED SURGERY  AND REQUESTED A FURTHER SCAN) , Miss Penney says she will Happily give me my requested   Scan in September    and we will then discuss Results ,    and she cautions me that although she will give a Scan  for the reasons that I had written regarding Conflicting Evidence  but the situation may change and she would be unable to do anything for me , But having read the letter and spoke with me realises I had already thought that through ! ,I told her yes I have and with my family too who agree with the reasoning behind that Decision " I totally get it she repeats " , " I said thank you very much I wish I had met you last week "   , I then ask do I now contact Mr Hughes to arrange the Scan ? , "  OH NO YOU ARE MINE NOW " WITH A BIG SMILE , she told me to go away get a break and try and carry on your recovery it has been a Tough time for you ,I will see you in September 

So that was the end of appointment 28 I had finally met someone who says  it as it is  ,      very rare on my journey ,I have started a Formal Complaint on the Issues  that  I had a Christies , the staff are amazing but sadly let down by others

So unless anything major Happens   thats it until September and I will try and attach a copy of the letter that I handed     in , wish me luck 😁  

Love you all Tom x