Back to square one

Yesterday I finally made it to Sheffield. I had been waiting for seven months for this appointment and we set off on the eight hour round trip full of hope. What we got was unexpected bad news.

I know I have long bored you with the inadequacies of the NHS administration, but I think in this instance it bears repeating:

Diagnosis             12 July 2010
Referral to Sheffield’s Gamma Knife Centre        26 July 2010
Decision to operate rather than have Radiosurgery at Sheffield 28 July 2010
Surgery                7 August 2010
MRI Scan at JR   1 November 2010
MRI Scan received by Sheffield 14 January 2011
Visual Field Test at JR     12 January 2011
Visual Field Test received by Sheffield    4 March 2011
CALL TO PRIVATE HEALTH INSURANCE COMPANY             10 March 2011
Consultation at Sheffield              17 March 2011
Gamma Knife Radiosurgery scheduled for            24 March 2011

You will see there is one defining moment in this timeline. The day I became a private patient.

Sadly before Christmas I had to leave my lovely company Realia. They have been remarkably kind to me throughout and continue to be incredibly supportive.  But by December I had been on sick leave for six months. It is only a small company and I felt it was unfair to continue on sick leave when I had no idea when I could return to fully discharge my duties as an Account Director. So I resigned and resigned myself to living off family and on benefits.

In the New Year my old employers Quantel got in touch and kindly offered me a part time contract for a few hours a week. I accepted and when I started I was handed a pack containing details of their private health insurance and was told to call them. I did. And within seven days I saw the specialist Neurosurgeon I had been waiting seven months to see on the NHS.

At this point I had very mixed feelings; elation that I was finally getting the treatment I needed, but also sadness that we have a two-tier health system. I am extremely lucky to have this insurance, but what about those who don’t? How was I ever going to repay Quantel’s kindness?

So on 17th February, St Patrick’s Day, Adrian and I head up the M1 to see Mr K. The only appointment we could get was 4:45pm but we were not in a position to argue so we arrive in plenty of time and wait in the waiting room. All the feelings come back, we are apprehensive but happy that we are seeing the right person and confident that this is the final phase in Tarquin’s demise. I should be healed and healthy in plenty of time for our wedding, which is 9 weeks away.

We go in and meet Mr K who shows me the MRI scan taken on 1st November. And there he is. Changed but not diminished; Tarquin, my tumour, is back. As big and clear and life threatening as ever.

After my surgery Mr G had informed me that he was able to remove 90% of the tumour. Mr K informs me that this is either not the case, or that we were mistaken in thinking that Tarquin was a slow growing tumour. Tarquin is back to 3cm in size, he resembles a broccoli floret rather than a plum but he’s there. And now he’s managed to grow around more nerves and as well as taking the sight in my right eye, he now threatens the sight in my left eye. Surgery is now not an option as any resection would damage the nerves and would cause me to lose my sight completely. All we can do is Gamma Knife radiosurgery.

Adrian and I look at each other in disbelief. How could this happen? How can Tarquin have grown back in just three months? And this scan is four months old – what size is he now? How can anyone have looked at my scan in November and ignored what is plain to see (even with one eye)?

Mr K continues with the news that my visual field tests which took six weeks to get to him, are worthless as they were done by two different methods and therefore cannot be compared. He  also explains that when he does a pre-operative MRI scan on Thursday,  it may be that the tumour is too large to treat in one go and that I may have to come back in a couple of months for a second procedure. But doing nothing is not an option; we must act and act fast. He schedules my surgery for next Thursday. One week’s time.

The Gamma Knife Surgery will cut off the blood supply to the tumour. There will be no immediate effect, but over a number of years Tarquin will turn from tumour to scar tissue and eventually be absorbed by the body. Mr K is confident that he can apply the Gamma radiation to most of Tarquin, but he will have to leave the part nearest my optic nerves in order to safeguard my sight.

As we leave his office Mr K tells me to “cheer up”. An odd thing to say, but as we know Neurosurgeons are not known for their people skills. And I really should cheer up. He could have told me to go home and put my affairs in order. He didn’t. We have an opportunity, a chance and that is something to be grateful for.

On the way home we find it hard to talk. We stop for something to eat and a pint of Guinness (well it is St Patrick’s Day and I can’t let a little thing like brain cancer get in the way). Once at home we sit and hug and cry. It’s just like getting the diagnosis all over again. We feel like we are back at square one, only this time it is worse. I am still recovering from brain surgery which will leave me with lifelong side effects. I am now permanently visually impaired, have reduced cognitive function and epilepsy. It feels like the last seven months have been for nothing.

For the first time I feel angry. I’m not sure who my anger is directed at. Adrian’s is directed at the inadequacies of the NHS. In particular the temporary staff member who has consistently lost letters, MRI scans, Visual Field Tests and just giggles inanely when I phone to chase things up. He considers her to be negligent. I just blame Tarquin.

Phoning my parents was so hard; they too had such high hopes.  But when I check in to hospital next Wednesday I know I will finally be getting the treatment I need. Tarquin will be banished and die in exile like his namesake. But I can’t help wondering whether this could have all happened sooner, and indeed when I would have been treated if my health insurance weren’t paying a significant sum. But you can’t live by ‘what ifs’, it will drive you crazy.

Now then, where did I put all those modest nighties?

Profiterole vision

As March is Brain Tumour Awareness Month I thought I should write something. I feel I have moved into the category of ‘living with an inoperable brain tumour’. I am not undergoing any cancer treatment as I am still waiting to hear from Sheffield. I did phone them this week to chase and they had STILL not heard the results of my most recent tests – a visual field test – which I had done on 12th January. This was to test my peripheral vision – or as I kept calling it – my profiterole vision. I had the test done in the Eye Hospital on the ground floor of the JR building of which Mr G’s office is on the 3rd floor. Considering the execrable administration I have encountered, I nearly offered to walk the test results upstairs myself, but I thought that may be rude. How I wish I had!

The test itself was tragi-comic. They covered my right eye and with my left I had to look at a screen where essentially lights are flashed on in various places, and I had to press a button whenever I saw a light. So the lady flashed the lights and I duly clicked the button. She mapped my profiterole vision onto a chart and then she moved on to my right  eye.
Eye Lady: “How much vision do you have in your right eye?
Me: “None”
Eye Lady, with no sense of irony: “Oh. I can’t test you then. I can only test people’s vision who can actually see. If you can’t see then you need a sight test with an Opthalmologist. Please take a seat in the waiting room and I’ll see if I can find one.”

Eventually an Opthalmologist was discovered in the Eye Hospital (amazing) and she set up the machine to do my right eye. She gave me the button and started the test. Now of course I know what the machine sounds like when the lights are flashed on and off, but I see no lights, or indeed ships.  So really what I should have done is hand carried this entirely blank chart up three floors and put it in Mr G’s pigeon hole myself.

So still ineptitude among the NHS admin staff and still no date for Gamma Knife treatment. There may be some light at the end of this tunnel, but I can’t see it. With either eye.