Well, the shit hasn’t just hit the fan, it has covered everything and is slowly working its way down the wire. One oncology clinic has opened up a whole new world of worry, despair, anger and all the associated negative words cancer conjours up.
What I love about cancer is its ability to draw a veil of comfort across you from time to time only to swiftly pull it back as if some sick video game. The veil brings with it pictures of respite, no operations or treatment and as normal a life as you could expect with this disease. As soon as that veil is removed the stark horrors of reality come crashing down on you again with unimaginable force.
Having survived one oncology clinic with brutal news that the cancer looks as if it’s spreading in my chest, closing off my esophagus and is in my my tongue, the future looks very bleak indeed. A subsequent oncology clinic brought the news of a potential spread into the thoracic spine. Well, I suppose, why have one thing to worry about when you can have three?
I had an operation on Tuesday January 17th for the team to remove biopsies from my mouth, tongue and esophagus. This was my seventh general anaesthetic in the last five years but when I went into theatre it didn’t bother me in the slightest. Why? Because this time I had so much else to contend with that being knocked out for a couple of hours was the last thing on my mind.
Luckily I slept fairly well that night as I cope with the anaesthetic quite well, and the following day went home to wait another week for the results. Thursday morning I tried to swallow a tablet and I nearly choked to death. Cathy phoned the hospital and back in I went for a camera down my throat to see what was going on. Whilst on the ward I managed to squeeze in an MRI on the spine - multitasking quite well I thought.
I was now faced with being unable to swallow solid food of any kind and my tablets would have to be crushed or supplied in a liquid solution. Luckily I could have morphine patches and some things come in an oral form, so only two crap tasting tablets spread over my breakfast cereal.
We’re only a few weeks into January and not only have I stood in front of a fast moving train once, I’ve been hit by it repeatedly.
Where does all this leave me? Well, next week I have two clinics which will decide what the future holds, if any. A sobering thought to keep me on my toes.
The Mayan prophecy seems to have come true in my case. 2012 is my year it seems.
Unfortunately the results of the scan were a real blow. Hywel has been finding swallowing more and more difficult over the last few months and as well as a CT scan for his chest and abdomen he was referred for a barium swallow. The barium swallow involves drinking a solution which tastes a bit like Gaviscon and is the same gloopy texture. A series of X rays are then taken which can track the flow of this stuff through the esophagus. This was undertaken on January 6th and Hywel’s clinic for the results was January 10th. I went to the hospital with him and waited whilst the test was done. Hywel came out looking a bit shell shocked. The radiographers had shown Hywel the X Rays and there was a considerable narrowing of his esophagus - it being only slightly wider than a vein in one place. We were forewarned there was a new problem.
The news was as bad as could be. The CT scan and barium swallow showed a strong likelihood cancer was causing the esophagus to narrow. It had also shown up a suspicious area on the tongue. Hywel asked for a prognosis and was told it could be as little as 6 months, possibly longer, as he was in good health apart from the cancer. It was a huge shock. We had been living in a bit of a bubble for the last few months without any treatment to contend with and no imminent results. The bubble exploded with that news and again Hywel has been immersed in the world of cancer treatment. Since the day of the results we have spent more time at the hospital for clinics, tests, scans and operations than we have at home. When we have been at home we have been faced with telling our loved ones and friends the news and the snowball effect of this with the resulting texts and phone calls. It is lovely to know how much people care but at the same time it is exhausting. We try and grab as much quiet time, just the two of us, but that is tinged with so much sadness and an overwhelming sense of loss.
Since results day we have made ourselves get out of the house a couple of times. We spent a few hours at Ogmore by Sea, and also in Garw Nant which is in the Brecon Beacons. Hywel finds being out in a natural environment good for the soul, it seems to help him find some inner calm. Whilst Hywel was waiting to have his op we spent time attempting to cheer ourselves up by making lists of good things - all the places we have been on holiday both alone and with the children, and all the concerts and shows we have been to. Hywel bought a Lego Millennium Falcon and has spent some time building it with Elliott this last week. It is lovely and at the same time heart wrenching to watch and listen to them working together. We are still hoping there will be some good news at next week's clinic, that they'll be able to do something about Hywel’s swallowing and that some of the areas which look worrying will be fibrosis caused by the radiotherapy rather than the cancer taking over. We try hard to hold onto some vestige of hope. I feel helpless again, as if somehow I have failed to protect Hywel and the kids, although I know deep down that I am not to blame, it is the fault of this vile disease.