Proton Beam funding refused by the NHS Funding board

When I received my results of my last MRI 3 weeks ago my oncologist recommended that I have proton beam treatment again
He felt that it was the correct retreatment and put me forward for funding via the NHS commissioning board
Three weeks later I hear that funding has been refused
I am awaiting the official letter but I am advised there is little likelihood of appeal

Also In the last week or so my oncologist has changed. He, ironically has gone to work at the UK proton centre in Manchester due to open in october 2018

My new oncologist was the one who called me and told me the news
She has suggested as an alternative treatment called gamma knife
She will see me in the new year to review the situation

I am now in limbo and unsure of the next steps - Are there grounds for appeal?
Can I look at private funding either in USA where I went before or cheaper but unknown alternatives like the proton centre in Prague

Lots to consider and agonise over

In the meantime I have a ticking time bomb tumor in my head

MRI Results

Saw my oncologist today with the MRI results
Unfortunately there is sign of regrowth in the area where they last operated
There are 3 small changes they can see - all around 2 to 3 mm. Very small but growing
I new it was likely to happen sometime but I had hoped the previous radiation would keep things away for a lot longer - like tens of years longer
Lots to consider and will update soon with the next episode of this journey

MRI Time

Scanziety is well and truly set in. I had an MRI
I was on a scanner in the car park!
A mobile unit. They must be busy
They have a MRI unit with 3 scanners at the hospital  plus another near casualty and a permenant mobile outside the MRI unit
So 5 in total
I was in an extra temporary one run by whoever they hire it from. So 6 MRI scanners running at the moment
It was a very busy unit and even with the extra scanner it still had half hr delays
Results on the 1st

MRI Results

MRI results today - No change - which is good news

We are doing a 3 month cycle between MRI scans at the moment

Pain in the neck

The pain in the neck has not reduced as much as I would like with the pills I am taking
I find myself continually needing to hold the left side of my neck/head trying to support the head
In fact my left elbow is now in pain due to the action of supporting my head !
The pain is mostly when I am relatively motionless such as driving and watching TV
I drive an auto thank goodness. I have adapted to a bit of one handed driving due to needing to support the head with my left hand - (The steering wheel is on the right hand side here in the UK)

As soon as I lie down the pain quickly disappears
I also am getting a bit of an issue with my tongue where there appears to be pressure being put on the twelfth nerve.  As a result my tongue goes a bit off centre. Tilting my head forward or lying down gets everything back to normal

I paid a visit to the doctors. I have changed pills to Gabapentin as this has helped before

Quick update

I have missed a few things over the past few months I will back fill a few dates

Back To Work

I went back to work today
I work from a home office although I am often out for at least part of the day, the nature of the work means that I would need to be available to answer the phone throughout the day
At least the "work load" is set at 50%

Pain

As part of my visit to see the surgeon on the 7th of March I had to have a X-ray to check the bone alignment
I had to extend my head up and down for the X-Rays
Within a few days I developed a fair bit of pain in the neck area which has been getting progressively worse
The only instant cure is to lye down and rest my head supported on a pillow
After a few weeks of this I contacted the hospital and they did another X-Ray.  This time I did a bit less movement as I guess it was me extending that caused the issue in the first place
The pain is more under control but is still constantly there

Follow up visit to the surgeon

Hey everyone
Visit to the surgeon today 7th
He is very pleased with the full resection of the tumour - so am I :)

Due to the various surgeries I have had it gets a bit harder for the specialist to read the MRI and they have highlighted a small area near my original Chordoma growth which they want to keep and eye on
Hopefully it's nothing

Next MRI booked for the end of March
I will be seeing the oncologist again in April
I will then find out what if anything he intends to do with me

Operational thoughts

Its over 3 weeks since the operation and its about time I wrote a little about the experience

I was certainly dreading this op.  The risks were higher due to various potential issues
There was talk of occluding (Removing) the veritable artery to the brain. Removal of a section of the Dura which is part of the protective lining surrounded the brain plus various other issues and problems that could occur during surgery

They called me in a day earlier I believe so that they could secure me a bed as if they got filled up with patients overnight the op would have been cancelled
I had to wait around 5 hrs in the neurosurgery ward A3 waiting room before a bed became available. I was on my own at first but then another bed was taken by someone who was quite confused and wanted the loo every 10 minutes but could not find it even though it was in the same room a few feet away. He kept shouting for the nurse. That kept me awake. Then just as I began to doze off around 2am they brought in someone else. There was a lot of noise getting him settled.  The loo guy kept telling them to be quiet as he was trying to sleep!.  After they settled this new guy he spent the night texting and his phone kept pinging all night
About 4 or 5 am I got hold of a sleep pack some ear plugs and a mask. By the time I eventually fell asleep it was nearly time to wake up

I was on a no food after midnight with only sips of water regime
At about 7.45 they had me ready to take up to the neurosurgery theatres. I saw one of the surgeons and signed the operation consent forms. The anaesthetist went thorough what he was going to do.  He seemed to think I would be in theatre for around 3 hrs which was odd as my surgeon said he had booked me as the only operation that day as he thought it would take a long time
They took me up to the to the neurosurgery theatre and I recall the clock on the wall outside the theatre was dead on 8am when I got there. I am in the pre op/recovery area directly alongside the theatre
About 8.15 they wheeled me into the anaesthetists room and put me to sleep. The assistant to the anaesthetist had terrible breath. I was out cold in a few minutes so I would no longer notice or care

I wake up in recovery area and try an fix in my head the time - 6pm
I can wiggle my toes and move my hands and don't appear to have any pipes or tubes in me
I chat to the recovery nurse and I recall she lives in the same village as me.  I asked her if she has been to the new village coffee shop and she had not as did not know it was there.  I said if I saw her there I would not recognise her with her clothes on (she was wearing scrubs)
Clearly the drugs they had given me were strong !
I have no recollection of going back to the ward. It was ward A5
Apparently I was awake and Julie was there waiting for me although I cannot specifically recall
I had my favourite position. The window view in a 4 bed room behind the nurses station

That was my surgery day

Haircut

I have been desperate for a trim since the operation

I do it myself with a hair trimmer and its a lot of head tilting and slightly awkward positions

Added to that I had to contend with a large scabby scar !

Also there were other small scabs to work around where they fixed my head in a frame for the op

Anyway it took 4 times longer than normal but I managed it and I have a well trimmed bonce :)

Beginning to feel a bit more normal

Out of the la-z-boy and a sleep in bed at last

I manage a nights sleep in bed tonight

I have been sleeping on the la-z-boy since being home as its been a lot more comfortable than trying to lay flat in a bed with difficulty in turning etc

Got this chair just after the first operation.  Has been fantastic for recuperation

Home

I am feeling pretty good considering. I will try and update and fill in the past few days when I feel up to it

The surgeon is very pleased with the outcome

Operation 4/5 done

Operation number 4 done or 5 if you include the Biopsy

I was on the operating table approx 7/8 hrs
They feel they have done a good job

I want to surgery at 8am and woke up in recovery around 6pm. As far as I can remember

I am in in pain where I was laid on my side for so long
My right leg and arm and hip and shoulder
They need me fixed in one spot while they do the operation on my head
The head is fixed in a frame while the operate via the left side of my head / neck behind the ear

I will update more when I feel a bit better

Oddly enough only a little pain from my head so far !

5hr wait to get a bed

I got to the hospital at 3pm. Got a bed at 8pm.
Early start tomorrow for the operation
I have signed the consent so all things underway
In a 3 bed ward by myself so the only snoring will be my own !

Been awhile since my last post - There is a lot of new stuff

The bottom line is that the Chordoma is back and I am booked in for another operation on the 25th January

They have set aside a full day as me being there only surgery that day and there will be 2 surgeons working as a tag team to get to the Chordoma and hopefully remove it

I am going in late the day before for an early morning kick off for the surgery

Today I have put in a few notes and updates using the correct timeline/dates these things occurred. So have a look at the last 4/5 posts to catch up with what has been going on