17. Groundhog Dog

After waking up from the re-do somewhat quicker and easier than the week before, I was taken to my room. I can say at this point it was obviously lovely that I was in my own side room with a bathroom, but it was a far cry from the room I had only spent a few hours in the week before. The noise, even shut in a side room, was what I can only describe as deafening and I don't mean during normal hours, even right the way through the night people just talked, laughed, screamed loudly to each other, banged doors as if sleep was a dirty word in the NHS.

When the ENT team arrived promptly at just gone 8am the following morning and informed me I would be staying in until the next day for observation, I can't say I was enthralled with the idea. But also I was still pretty traumatised by the bleed outs, and was a bit frightened to be going home and it maybe happen again. Also the pain was getting worse and I really wanted them to find something with a bit more uummmpppfffttt before I went home to paracetamol and the occasional ibrufen. I woke up in the middle of the night and tried to hang on for meds and agreed to try some morphine at a very low dose to tide me over until the pain killer police deemed it ok to 'ruin my stomach lining' with even more ibrufen. The result was pure agony again, similar to that where I had been rocking and dribbling waiting for the pills to start working but this time there were no pills and I had an hour to wait until I could make them give me any. That's when I video'd myself and put it on Face book. I felt broken, helpless, tired, hungry, in so much pain and there was nothing anyone could do, and the whole time I just kept thinking <<<what if I'd agreed to the original operation at Norwich, I'd be dead probably>>>> They tried a few things over the next day, Tramadol, didn't work for pain and I laid like a drunken zombie waiting for the effects of not being able to lift my arms or head for a few long hours, so IV paracetamol as a base and only 3 doses of ibrufen a day every 8 hours when my pain needed something every 4 was hard going. By the evening of the second day I asked to time my ibrufen for 30 mins before the meal was served. I'd ordered jacket potato and planned to scoop it out mash it with as much butter and take 4 good swallows, hide the rest or flush it down the toilet and prove to the nurse I'd eaten so they would discharge me the following day. At least if i was home I could take what I needed when I needed. That all went pretty much to plan, with the added bonus I think I got sent the smallest jacket potato ever and although they'd given me flora instead of butter ( YUK!) I still manged to make it look like I'd had a very good attempt at eating. Wednesday morning arrived and after the rounds I just had to wait for my medication to be sent up from the pharmacy and Paul could take me home and we arranged to pick up Lottie on the way past so he didn't have to leave me later to go fetch her.

When we all arrived home it felt like Groundhog day from almost a week before. And although I'd asked is this like having to start from Day 1 again is as far as post surgery was concerned? and they said no, it felt very much like a whole week had gone by and I was no better, in fact I felt 10 times worse. I had a 2 week check up at the private hospital in 8 days times and I was determined to get well enough to go. So through trial and horrible error with pain medication, we won't even re live the 'lets try some morphine again' adventure where I ended up sleeping on a cold bathroom floor feeling like my stomach was on fire and going to be sick :( ,and trying different foods, and gradually spending more time out of bed than in it.

Over the next week I managed to get myself to the stage where I could stay awake for a whole day without falling asleep randomly, I could eat tiny half teaspoons of food if I nibbled it at the front of my mouth like some starving hamster on crack and then gently swallow it and washed it down with tepid mouthfuls of water, and knew I could rustle up enough energy to do the trip to Peterborough again.

By the following Wednesday I was ironing my clothes to go and see Mr Amen at the private hospital and let him tell me how it was all going. I knew he wouldn't have my histology yet as he'd said it normally took 3-4 weeks, but to see him again after everything, and get a better idea of what I was going to have to do next was reassuring.

The only reservation I had was what was he going to suggest if there was no cancer in what he'd cut out? What if all this had been for nothing?

I knew I didn't want my tongue cut away and have to have no swallow or speech or reconstructed out of bits they'd chopped off me from somewhere else, but the alternative was just to go straight to radiotherapy and chemo. And I knew without a primary the radiotherapy would be widespread not targeted and far more brutal and most likely the chemo which I didn't want would be almost compulsory. But I just had to get through tomorrow! For the first time in my life I was learning that its ok to be prepared, but taking one day at a time is sometimes the only option life's going to throw at you, and so I pulled out my leopard skin trousers and vowed to face it like the wild cat that I am :)

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