8. Robots and Blackmail

The following week we set off for Norwich Hospital for the second time. The drive obviously less traumatic than the previous journey when I'd not known if I was going to suffer some genetic reaction to the Pet Scan. The oncology department was modern and organised, but full of sad head and neck patients, smacking you in the face of your impending future of swollen faces, spitting into tissues, wasted bodies and nasal feeding tubes. I sat there remarkably calm, and watched the room and of course Pauls reaction to some of the people there. Up until this point Paul had very much taken the 'we'll see' approach to everything that had been going on.

I'm not sure if he was in denial for his own self preservation, or trying to play the encouraging optimist for my morale. Whichever it was, I was starting to find it immensely frustrating to be honest. I've always been the doer, the motivated arse kicker in our relationship, and however sick I'd become over the course of our 20 year marriage, and there had been some low points, I'd always been able to adopt the 'leave me alone and I'll sort myself out and emerge when I can carry on as normal you just get on and ignore me.' I knew from research, this, if it was what I thought, wasn't going to be something I could shut myself away with and emerge a few weeks later looking like I needed a biscuit and my roots doing. This was going to need at least both of us to get me through the other side of this both physically and mentally.

The consultant on first introduction seemed nice, again they wanted to stick the camera up my nose and 2 of them had a good poke round and between them decided there wasn't anything to see.

He sat down next to the exam chair, the other guy stood behind me, at the same time the Mac Millan Nurse from the other hospital appointment in Kings Lynn also had joined the room, Paul sat in the visitors chair facing me directly. The consultant went on to say they had only found the lump in my neck lighting up, the tonsils had a slight uptake but because of their function it was normal, so they still basically could not find the primary to the secondary cancerous node in my neck. <<< but I'm still here, had you worried about the back ache though didn't I hahaha>>>

'So there's nothing else lighting up anywhere?'

'No'

'Not even the node in my lung that they have been watching for 2 years that's not cancer?'

'No'

'So you can't find proof of anything anywhere else apart from the lump'

'No'

***** REMEMEBER THOSE NO'S**********

He went on to say that he felt I was an ideal candidate for TORS tonsil and tongue procedure and a dissection of the neck to remove the node and many others and fatty tissue on that side of the neck and proceeded to then list the possible short/long term side effects of his proposal which included:-

bleeding, infection, stiffness in neck and shoulder, loss of movement in tongue/ and side of face to the side of the mouth, loss of speech, lymphatic drainage issues and I'm sure there were more but I'd actually already decided by then and switched of to his list of horrors. I asked how he thought that was a good suggestion of treatment when he didn't even know where the cancer was or even IF the cancer was anywhere, and would all this be carried out by him?

His attitude changed. He rolled himself away from the side of me, arms folded and said ' it would be me or one of the others in the team ( so I would be agreeing to surgery not even knowing who would be doing it) and this is the treatment plan we all suggest and if its not suitable to you, we can just send you back to where you came from '. At this point, all I could think about were the patients in the waiting room, how many of them had shown hesitancy? How many of them had heard the word 'cancer' 2 million times before their appointment and convinced themselves they might die?, How many of them have heard the phrase 'oh just trust your team they know best.' The vision of those sad people, butchered, paralysed, starving and spitting up green mucus into tissues waiting for their next appointment for the damage to be viewed by their mutilators burned into my brain, had this been their only default offer by this man or another of his team?

'So if I do nothing then? How long have I got? I'm thinking the lump in my neck has been there a year already and you still can't even find the main cancer so its pretty slow growing? How long 6 months? Time enough for a few nice holidays and end up in Switzerland?' I stared him directly into his face with as a direct matter of fact manner as I could muster.

His face said it all then, and he bowed his head and slightly gritted his teeth, he knew his urgency to make me his next 'candidate' to be able to play on the hospitals new TORS robot was out the window. There would be no grand theft auto of my tonsils for this up and coming gamer. 'Well if that's how you are thinking I wouldn't even be able to accept you for treatment now as you aren't in a correct frame of mind to be signing any consent to treatment'.

Basically he was telling me I was deemed not of sound mind because I had mentioned Switzerland and the implication I would be going there seeking end of life help. He mumbled something about the Mac Millan nurse would contact me the following Monday to see if I'd had the weekend to change my mind. I told him that wouldn't be happening, and we left the building.

On the way home I had a flutter of fear a couple of times, as I realised the enormity of what I'd just done. I'd, like so many times in my life, cut my nose off to spite my face, but before this, it had been little things in comparison, jobs, cars, decisions about money, or keeping friends, this was the biggy. I'd stood my ground and potentially signed my own death certificate.

The following Monday the nurse did ring. Sickly sweet, trying to butter me up by telling how the consultant liked me, had been impressed with my knowledge about the type of cancer I had and my courage to say no. But basically did I still want to go ahead?

The answer was still no

As per training she told me she was here for me, not for the Dr's she didn't work for them. But I told it like it is...

'You won't stand against them, talk back to them, its your job, and you would soon find yourself out of one if you upset them with any opinion that doesn't suit their ethos.

And as for for being on my side, lets get one thing very clear..... There's only one person on my side, and that's me!'

I heard her echo the word 'me' like she already knew what I was telling her. And there ended the conversation.