Proton Beam Therapy

I had a consultation with the Oncology department today with Professor Burnet
A very positive meeting. The scans look good with only slight evidence of any remaining damaged tissue
This they believe will be eradicated by the radiation treatment
The recommended treatment is Proton Beam Therapy
This therapy is currently unavailable in the UK so I am being recommended for treatment in the USA
This is likely to be at Procure in Oklahoma
My case will need to go to a panel to confirm eligibility
All being well I will spend approx. 8/10 weeks having the treatment in the USA

The final prognosis after treatment is predicted to be very good

More walking

Got out again for a short walk today
Wears me out but I need to get active again

Very bored at home
Unfortunately unable to concentrate on anything for long

BT mucked up our Infinity install so spent a fair bit of today trying to get it resolved.  Still have no phone working since the 13th

A walk

Left the house for the first time since coming home from the hospital
Walked to the postbox and back - very exciting
Wore me out !

Neck pain same as normal - at least its not stopping me from sleeping

Seeing an oncology professor at the hospital on friday to find out the next steps

So the weekend

It has been a slow week since coming home on monday night
Tuesday and Wednesday I had general ache and pains from my neck and head
A visit to my local GP sorted out a defined pain relieve regime and im pleased to say that my suffering on that front has subsided somewhat

I have had a lot of visitors over the week which has kept me entertained.  Thanks all who were able to drop in

Looking forward to a pain free weekend

Home again. Third time lucky

As the title says left the hospital this evening
First time home since 1st may
Let's hope I sleep ok
Very, very, very, tired

Goodnight

Hospital Food

Felling better

My bruised arm.  How ?

Another day in Hospital

Pretty uneventfull as usual
Got my appetite back and had 3 good meals
Much more awake during the day
Great to have a visit from Robert
Got the news I have lost over 13kg so some good news

So where the hell has this 4 inch scar on my top right thigh come from ?

During the latest operation they had to be a bit more aggressive in removing damaged tissue
As a result they broke through the dura (which is part of the thin membrane that surrounds the brain and spinal cord)
There was a leak of cerebrospinal fluid
Therefore the leak needed to "Plugged"
They used fat from my thigh to patch up the hole in the Dura

Erratic blogg

I have been a bit out of if the past few days so the blogg has taken a hit
I will try and get it up tp date over few next few days

Sleepy Day

From the moment I woke up today i have felt very tired
Slept most of the day
Finding it hard to eat
Had a visit with Paul Booty from work but kept dropping of to sleep
Later Phil Hammond came which i was a little more awake
Later woke a 9:25pm I had not wished my twins happy birthday
Managed to set up a facetime call with Thomas and spoke to all of my boys

Sunday

Remained the same for close observation, oxygen and drip.visited all day still very poorly.

Friday

Went into town to get boys birthday pressie phoned to see how Paul was at 10 am
Told he had deteriorated overnight. Had Ct scan in night and had vomited. Also had chest X-ray
Told he was drowsy and confused, had air in the brain on high pressure oxygen and he had fallen and banged his head.
I went bait ballistic as no one had phoned me. Got to hosp as quick as I could and a friend met me there (she is a matron at the hosp)
Paul was extremely drowsy didn't know where he was and confused. Saw charge nurse and dr and told high percent oxygen he was having would help resolve problem in a few days. So he was for close observation and check ct Monday.

As at risk of falling moved to bay where a nurse was all the time. Remained out of it all day.
Commenced on I've antibiotics and had another ct and lumbar puncture. Can't remember any of this. Had a high temperature

Thursday

On Thursday morning I tried to phone and email Paul, but got no response. The nursing staff when I phoned said he was fine. However as he had not phoned me I felt anxious.
I decided to go and see him. He had a very bad headache and was going for post op MRI scan

For the rest of the day he was very drowsy but could walk to toilet and answer questions. That afternoon he vomited a few times and needed lots of drugs for pain and to stop any vomiting.
I felt a bit uneasy when I left him that night as he was drowsy but was told it was tiredness and the anaesthetic.

Operation Three

On Wednesday I went into ward a3 at Addenbrooks hospital, Cambridge.
Again the operation had many risks and there was a possibility of having to cut through the oral palate and risk of tracheostomy etc.

Operation took about 4 hrs.

I cannot remember anything since my op until today so Julie is updating these days.

Paul came back to ward a5 after his op. He had a drip and oxygen. He was very drowsy but knew where he was and able to hold short conversations.
Mr Mannion came to see him said op had gone well but small hole had been made in dura(outer lining of brain) so more prone to meningitis.

Getting ready for the operation