My world is crumbling

This is your 30 second tissue warning...

 

 

It’s week commencing 23^rd February as per my schedule at the end of the last post I’ve got a busy week.

Andy is out of holidays, his holiday year doesn’t reset until April 1^st but we’ve got two 'must be at' meetings plus Nigel, Nunu & Maureen are up on Wednesday & staying overnight, we've not seen Nigel or Nunu for two years and the sad fact is this will probably be my last time of seeing them in person, I’m not confident given the increasing seizure activity that I’ve got a year left, it’s horrible to think like this but we’ve been realistic all the way through this journey.

Andy met with the main Director he reports in to day to day and explained his dilemma, again his company showed incredible kindness and compassion in granting him the time off.

It's Tuesday morning and we head to The Walton Centre to meet with Alison our Neurosurgical specialist Nurse, it’s a regular review meeting and of course we’ve got questions with all the seizures and their increasing frequency.

Alison came and found us in the Coffee shop she was running early and ready for us so coffee’s in Andy’s hands we went down to Alison’s office which is adjacent to Mr Farah’s. We sat down, there were brain scans on the screens in front of us. Alison asked how I was and I explained all of the symptoms, how the seizures felt, she causally ‘dropped out’ “The boss (Mr Farah) is going to pop in to see you”, nice of him it turns out we both thought.

A couple of minutes later and in walks Mr Farah, he is absolutely incredible, I cannot speak highly enough of him, his manner, his ability to explain things in a way you (I) can understand and his straight forward honesty. In my position I really don’t want to have to listen to cryptic answers and clues, my brain can’t cope and lol I’ve never finished a crossword puzzle in my life. I rely on Andy to ‘translate’ a lot of my consultations into a format I understand  but most of the time with Mr Farah I understand precisely what he is saying, today it turned out would be no different.

We shook hands, he asked how I was, I updated him, Andy filled in the gaps, Mr Farah nodded then said, “It’s understandable, there is fresh tumour growth on your scan and it’s on your motor cortex”

Unlike the first occasion my tumour was found and the devastation that hit us in that consultation today we were calm, almost matter of fact about it. Just over a week ago we’d been told the tumour had changed shape and was going through necrosis, both facts were true but, and I don’t blame anyone for not telling me a week earlier that there was fresh growth. It may be the Oncology team and radiographers who reviewed my scan the week before had missed the fresh growth or more like we needed to hear it from the man who would deal with it in the first instance and that was Mr Farah.

The bottom of the scan is the front of my head, the roundish bright dot middle left is Fluff!

Andy asked how large was the new growth, at the time of the scan this beast is just TWO MILLIMETRES in size but its big enough to cause the mayhem I’ve been experiencing lately. The concern is the last tumour grew between scans six weeks apart from nowhere to 1.7 cms, its two weeks on now from this scan and the beast is aggressive. It turns out the scans on screen were of me! The almost circular bright white dot in the attached scan is the site of fluff old & new, the new tumour is the tiny lump top left of this. (around 11 o'clock if you imagine the 'circle' as a clock face). The wider area is the 1.7 cm tumour site and the actual 'dead tissue' too. As I mentioned above the 1.7 cm grew from nowhere to this size in six weeks.

When I said above how I admire and respect Mr Farah’s approach this will explain why.

“Julie, you’ve exceeded a lot of people’s expectations and the time you’ve had since the first tumour is far longer than we expect from a lot with GBM IV, we cannot conduct stereotactic radio surgery on you again. This tumour is small, I truly believe I can remove it in the same manner as I removed your first tumour, the risks remain the same, a 12% risk of some left sided paralysis but I can remove it. The time will come when the conversation we are having will be completely different, sadly I’ll then be saying, I’m sorry I cannot do anymore for you, but for now I am confident I can operate successfully on you”. We explained we fully understood all of what he'd just said.  It’s hard to sit in a meeting and hear these things but deep down I knew fluff was back! I know my body and I knew I wasn’t right so I wasn’t surprised to hear the conversation and I know we remained outwardly calm. Mr Farah said I needed to consider whether I wanted to go through with the surgery, I asked how long it was between the second and this new tumour appearing, Andy had the answer, "It's five months since tumour two and it was a year between tumour one and tumour two", this thing was coming after me with speed now, I had a lot to consider, its not that simple, so much to consider. He didn’t need an answer now but as a precaution he was authorising a specialist brain mapping MRI scan, I’ll explain in more detail in the next blog. At this point Mr Farah pulled out a fountain pen and was filling in the form for my scan and signing it, we laughed as we discussed the scarcity of fountain pens these days and our childhood recollections of inkwells on school desks etc. Previously I agreed in an instant to surgery, today I couldn’t, I needed to think. We left the meeting being asked to let Mr Farah’s secretary know of my decision within a couple of days.

As we left the hospital today there were no tears, we hugged and sadly we didn’t have time to go to Crosby Beach this time, Andy had to go to work once he had dropped me off. As we drove away we discussed the options, Andy said he would support me no matter what I decided but added “be absolutely clear on what you are agreeing to if you decline surgery hunny” he squeezed my hand, I responded, “It would be me accepting this thing has beaten me” we both had a tear in our eyes as these words came out..

On getting home well here is what was going through my brain..

So Fluff makes a third appearance!! The leech is determined to hang on and cause mayhem!

Now I am getting scared the space and time between reappearances are becoming shorter... I know I have to be strong and fight this thing... But it's not always easy...

Now we go through a whole series of chats, mind boggling decisions, scans, pre op assessments, surgery ( not without its own risks ) Weeks of worry and mental torment.. Not only for me but for Andy and our Family too!

My brain is not functioning on full power as it is and my train of thought wonders off In all directions, only able to focus on one thing at a time.. Headaches then decide it's time to take over and blur the edges giving no room for any sense of the chaos whirling around in the mush that is my brain!

I struggle with the day to day things.. Getting my tights on, left leg into pj's, walking up and down the stairs alone, not being able to go out of the house alone and having to have half a mug of hot tea in case I have a "hippy fit" (seizure) and spill it down myself and the constant shaking and unsteadiness don't help!

I get so frustrated because I can't even manage to do the simplest of housework tasks without shaking and feeling washed out after twenty minutes! I actually pay a company to do our ironing! I struggle with this concept, I have never been untidy, in fact I am probably a bit obsessive as far as keeping the Manor dust free and tidy is concerned, Right now just wish I could keep it "FLUFF" free!

Then of course there's the profuse amount of facial hair that steriods provide you with.. Beard, Moustache, the whole hairy farcical Very "NANNY McPHEE" .... The "BRIDGET JONES" knickers designed for comfort around my outsized ass.. Again a result of the steriods! Not to mention the (now ditched) wigs! Horrendous things.. Hot..itchy and impossible! Scarves that say " look at me I have cancer"  BALD IS THE NEW BLACK :)

 

Andy called me later in the afternoon and asked had I given my options any thought and had I come to a decision? I answered that I had hardly thought of anything else but that I’d decided to have the surgery “I can’t just give in to this Andy, is that alright with you?” I was seeking his reassurance and it came instantly. “I’d have supported and respected any decision hunny, no one but you knows what it is like living with this daily but I’m so relieved you aren’t giving up, so relieved”. Andy called Mr Farah’s secretary to put the wheels in motion. Shortly after I had a date for my scan 18^th March, just four weeks away but again I cannot help think the beast is growing by the day.  I’m still scared, very scared.