Wednesday, 25 August 2010

I had a lovely day with my daughter Lucienne who came down from Glasgow today. We went out and took some photos with her camera which cost 3 x as much as my car! We took hundreds of macro images of flies laying eggs, vomiting and humping in a blackberry bush (Yes, of course the flies stupid!) I brought my camera along and checked to make sure the battery was in it, however I didn't check if the battery was charged! She was visibly relieved when I told her about my news from the previous night and we had a great day and laughed a lot. It was lovely to see you Lucienne xxx

My daughter Chantal passed me some lovely news tonight, apart from the fact that she is above me in our Fantasy Football League. Two of her work colleagues are leaving so a collection was made for them. They gave all the money to Chantal and told her to donate it to the 'Prostate Cancer Charity' for her Dad. Wasn't that lovely? Thank you so much Christina and Jacqueline xx.

Good luck with your driving test tomorrow Sasha, you can do it, stay cool! Don't give the examiner a hard time, he's just doing his job :-) xxx

Well I've had some very bad days and some not so bad says since the 18th June when I was first diagnosed, but TODAY HAS BEEN A VERY, VERY GOOD DAY and it all started last night with a call from Mel, the Macmillan Nurse at Carlisle Hospital. For the first time since my MRI scan and MDT meeting, someone was able to sit down, look at it all and talk me through it.

On one side of my prostate the tumour was very small and fairly central. On the other side the tumour was larger but not really well defined yet, and again fairly central. 'Central' is important, because that means the tumours are not near the outer covering of the prostate capsule, so they are not going to cause a 'break out' any time soon. This gives me time to decide on the two options that I have short listed now. It also means they are not near the nerve bundles which could be damaged if I have surgery, causing some problems with continence or potency. This was just fantastic but it was also information that was available 7 weeks ago that nobody relayed to me. I feel a little bitter about that but it is just insignificant as to how relieved I feel right now.

I went to see my doctor this afternoon after writing the following letter to her..........

24th August 2010
Dear Dr *****,
                                I am writing this letter so that I can lay out, in detailed order, my worries and wishes after being diagnosed with Prostate Cancer on 18th June 2010.

Story so far

May 18th  After rectal examination by Dr Lukose and PSA 4.2 referred to Consultant, Mr Bashir.
May 28th  Saw Mr Bashir, had biopsy same day.
June 18th  Saw Mr Bashir confirmed Prostate Cancer
                 Gleason 7 (4+3) with one sample at grade 5.
July 5th    Had MRI …told result available in 10 days!!
                Hospital ‘forgot’ to give me the result.
                Repeated phone calls to all contact numbers ignored.
                E Mails also ignored. Complaint to PALS, no reply
Aug 6th   Frantic with worry, obtained result over the phone
via McMillan Nurse, from Urology Nurse. Both of who were very helpful.
                Tumors confined to prostate capsule, no other detail.

Aug 12th Had bone scan. Very worried by comments made during this by Radiologist.
Aug 20th Consultants appointment after MDT meeting.
My notes were missing. No details from MRI as to position or size of tumors. Consultant unavailable. Brief details on A4 sheet given by Doctor. Bone scan clear. Nobody available who was on the MDT.
                      Letter being sent to Newcastle Freemans to request
                      seeing Surgeon and Oncologist to discuss options.
                     Also told that the main guy at Newcastle who did this surgery had moved to Dublin!
Aug 24th     Mel, the Macmillan Nurse called and gave me my first detailed report on my MDT meeting and MRI scan done on 5th July. Very helpful guy.

Summary
It was not until yesterday that I fully understood what my options for the future are, and now I need to discuss these with you.

My hopes now
I will see the Specialists at Newcastle in the coming weeks and decide whether surgery or radiotherapy is the best option. I am leaning towards surgery right now.
If surgery seems the best option, I would hope to have this done at Addenbrookes Hospital in Cambridge. Please see reasons below.

·    They have the Da Vinci robotic surgery availability there. I have attached some information.        There are only 6 in this country; there are none in the North of England.
·    My Cancer is Gleason seven, mainly grade 4 & 3 but one biopsy showed to be the most    aggressive, grade 5.
·    My close family all live within 30 miles of Cambridge, I have no relatives in the North of England for after care and support.
·    The most experienced surgeon at Newcastle has just moved to Dublin.
·    I am 58 and the Da Vinci technique has a much higher success rate with preservation of the nerve bundle linked to possible impotence and incontinence.
·    This procedure also has a far superior recovery time and I am just starting a degree at Cumbria University.
I understand that you can refer me to Addenbrookes Hospital.
Please can you help me?
Yours Sincerely

Daniel Sencier

There are about ten doctors in my practice and you rarely get to see the same one. I saw one of the partners who was so nice and unbelievably helpful. After a lengthy discussion she advised me to go ahead with my appointment to see the specialists in Newcastle and then to make a decision on either surgery or radio therapy. (I'll tell you about both another day!) If I chose surgery, she would refer me to Addenbrooks in Cambridge.
Phew I can go to bed happy tonight! 

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