Talk about fast!

Continuing on from where I left off, Fluff is back I’m distraught and I’m back in limbo. Dr Haylock my Oncologist & Mr Farah, my Neurosurgeon and their teams are amazing in the speed they make things happen. We often hear of lengthy waits but my experience is nothing short of excellence.

So September 2^nd I have a scan, September 12^th I saw Dr Haylock who referred me to Mr Farah, I saw Mr Farah on September 16^th, talk about fast! It’s clearly a combination of a need for speed, for the tumour had grown from nowhere between scans just six weeks apart! Also the fact that my teams are truly on their game, different departments but they work so in unison, it truly makes me wonder when I hear of others struggling with appointments and delays in treatment, it is most definitely not our experience.

Meanwhile back to the seriousness of fluff taking over again, I’m still having some problems but my meds seem right and my current issue is probably more the psychological side of things than the physical, this thing is really messing with my head in more ways than one.

It’s September 16^th and we have our appointment with Mr Farah; in advance Andy as always has been researching like mad, He had read of a piece of equipment called Novalis Tx that was also known as Cyber knife technology, it turned out that the Clatterbridge Cancer Centre had this equipment at its Walton site, they were the first hospital in the UK to have it, even today there are only 11 sites in the UK, given all of the benefits over traditional surgery its mind boggling there has not been greater investment in this ‘kit’ mind you at a couple of million pounds it puts things into context given the cash strapped nature of the NHS.

A link below to more information on the Novalis TX

http://www.clatterbridgecc.nhs.uk/aboutcentre/news/newsitem.aspx?storyID=3481

Andy felt that traditional surgery wasn’t going to be fair on me, we were aware of the risk of paralysis first time around and my hair is still struggling to recover. Novalis Tx treatment is quicker, it takes around 30-40 minutes versus around six hours for conventional surgery. It ‘destroys’ tumours by radio beam it’s extremely precise, it can be used on most cancers/tumours, you are treated as a day/outpatient and because there is no actual wound the risk of infection is nil! Andy did his usual arming himself with printouts of the technology and his research, we’d discussed it, I trust Andy implicitly he seems convinced this is what I need this time around and we went in to our meeting with Mr Farah, it went like this.

Mr Farah showed us fluff! It looked big, was it just the screen size? Mr Farah measured it; it was just over 1.5 cms so larger than fluff number one. There had been around six weeks between my scans; this beast had grown in six weeks! Andy expressed his surprise at the speed, Julie’s previous scan was clear he said. A slight revelation, Mr Farah said there was a very small indication of something on the previous scan, these scans are difficult to read, this was so small it was hardly a wonder it was missed. Had it been seen earlier it wouldn’t have made any difference except for it to have been monitored until it was larger, maybe not this large though! I’m staring at this beast and I’m still unclear what can be done about it, again I’m sat here looking at the beast thinking this is it, it’s bigger!  I’m going to die soon….  I cannot concentrate on what is going on despite it being my life Andy & Mr Farah are discussing, I feel I’m on the outside of this meeting looking in from a nightmare… I want to wake up!  I’m screaming in my head but I’m silent.  Mr Farah explained the options preferring to rule out traditional surgery, Andy was poised with his A4 pad and his plastic file with the Novalis Tx information. Andy negotiates for a living I have to say having seen him operate just at this level and this will probably swell his head and ego but he’s scarily good at what he does, I’m so glad he is in my corner fighting for me, truly I would have come out of meetings on my own and you could have asked me anything and I would have answered I don’t know… I’m convinced without his efforts and powers of persuasion to date well let’s just say I’m not convinced I’d be here writing this today, My frog prince.. he makes me so proud.. hehe!

Back to the consultation, Mr Farah suggests the best option is ‘Stereotactic Radio Surgery’ I’m lost this is all over my head, Inwardly I’m scared shitless… Andy asks “Is this the Novalis Tx?” Mr Farah’s eyes widen, “It is”. Andy breathed a sigh of relief, “I thought I was going to have to fight to get you to consider this option” he opened his folder to show he’d done his research. Mr Farah explained although not the specifically designed for treating GBM IV when he was trained in Germany he asked the consultant that trained him if it would be suitable, he told him he felt it would be. I was sat there thinkin“Hello, it’s me, it’s my head, it’s (sadly) my fluff, what the hell are you two talking about?!” I had to ask, Andy explained (again – My memory problems continue) He not Mr Farah was explaining the procedure to me! Andy stated whilst looking at Mr Farah for confirmation, “I understand it takes around 30 minutes?”  Mr Farah said “Slightly longer maybe up to 45 minutes” this all sounded surreal. Andy asked how soon could this happen, Mr Farah looked at his diary, Thursday 9^th October,  it was agreed, “we only operate on a Thursday afternoon” How bizarre, more on this later.

 Between the 16^th of September & 9th October there is lots to do I’m back into Clatterbridge for more scans and I need a new and stronger mask so It will be back to the mould room again.

Although it’s all a whirlwind, I wake every morning convinced I’m not going to live much longer, I go to sleep with the same thought and no matter how supportive everyone is being I cannot rid my head of what I see as impending doom. Things are moving so fast I can’t get over to see my children or my Dad, It’s horrendous not knowing if I’ll see them and hug them again, we skype or face time but I want warm hugs..

As usual some hopefully useful advice and some more thank you’s.

If you are going through this the chances are your head will be all over the place, you’ll hear people speaking but not take in what they are saying. We advocate taking someone in with you to take notes. Do your research too , ask questions, ask for your consultant’s opinion. We’ve never had to but remember if you believe in something and you are being denied it or if it is being dismissed out of hand then politely ask for a second opinion but at all times remain calm and respect the team you are ‘working with’

The one thing we have been fortunate with is our teams are amazing and we trust them implicitly, they listen, we share knowledge, on that note our sincerest thanks to our specialist Nurse Helen, to Dr Haylock and to Mr Farah.