The weather people forecasted up to 200mm of rain for the last 48 hours.

Fortunately our area saw roughly 111 mm of rain while an hour east of here, in Fredericton, about 140 mm of rain fell. I am sure the python that was found two days ago in Fredericton is very happy it wasn’t still lost when that rain fell ~ there was no Noah’s Ark to rescue it. This big reptile escaped from its home in August and hadn’t been found until 2 days ago which was the eve of this rain storm. It was in someone’s front yard not far from where it escaped from. Talk about timing!

Some vehicles weren’t as lucky as that snake. A few of them plunged off of roads here injuring the driver(s). Roads and bridges washed out in areas where there aren’t any street lights; New Brunswick has mostly rural areas. It is going to take some time to repair these roads and bridges but in the meantime there is something in the news about Hurricane Joachim passing off our shores early next week. If so this is one of the crazier falls this year!

This morning the Oncologist called me too bright and early. Bleary-eyed after an extremely late night I only woke up once our short phone call was over. Dr. Burnell had sat down with the Radiology Department to review Mathew’s scans. They believe that his L2 and L4 vertebrae are a different colour on the scans due to the effects of radiation. Everything remains stable meaning no changes in size for the last year. So next the Oncologist will talk to the thoracic surgeon again.

It was very thoughtful of her to call back and let us know she is working on Mathew’s case. The sooner the better. Once we know what is happening next Mathew should be able to deal with the reality better than this shadowy existence waiting for information.

Last night Mathew had another meltdown that lasted for hours. Unfortunately I was exhausted and by 4 am he managed to wake his father up. John took over and I stumbled off to bed but could hear the conversation for a long time after. Although I fell into bed at 8 pm last night, due to exhaustion, Mathew found reasons to wake me up until midnight which is when I gave up and got up. From shortly after that time until probably about 5 am he had a bad night.

Concentrating on his favourite games is difficult right now, as is watching his favourite tv programmes or just cruising the internet on his iPad. The imminent future is worrying him to where his anxiety medications aren’t working very well. Last night was a doozy because he then slept from about 6:30 am this morning until 8 pm tonight. I woke him up to give him his evening medications.

These freak-outs are exhausting. Physically and mentally both for him and whoever is around him. You have to keep your calm and try to calm him down. When they happen frequently they are difficult to recover from. Add to that the fear of upcoming treatment of some kind for his cancer and Mathew is not in a good place.

Yes, he/we are seeing a Psychologist and there is a Psychiatrist’s appointment scheduled in a couple of weeks. Talking and changing behaviours takes time and it does not always succeed. I dearly wish some of these specialists could just sit in one of our rooms for a day to truly understand what is going on.

I think this is a hidden side of cancer and treatment. It might be more unique because of Mathew’s disabilities. Cancer is wretched to begin with. Couple that with someone whose coping skills are not mature and the mixture is combustible. Emotions are ramping up with each new scan showing a little more cancer and the looming treatment on the horizon. I have been put through the emotional wringer so many times and so many man hours…I wonder how long it will take to break. Just shatter and never be the same person again ~ maybe to be a shell of what I once was. How much does a human spirit take before it cracks? We’re talking about someone who depends on me for everywhere and for 24 hours a day. He’s not quiet about anything and he is not happy. Every ache and pain is a new worry worth stressing over enough to wake me from sleep. Every rant must be thoughtfully listened to and dissected to help Mathew get through the roller coaster. He doesn’t realize the cumulative effect it has on us and even if he did, there isn’t anything he could do about it.

When I read about cancer stories of others’…none of them have this element of awfulness. Surely Mathew is not the only one in his particular shoes? Or is it just the ones who brave the battle and rouse up cheers of support that sail through and write about it? Are the rest of them hiding in the shadows? There are days this journey seems so lonely; Mathew is very angry, upset and scared his cancer is back. He is yelling, crying and taking us on an emotional roller-coaster ride.

Mathew is tired a lot. He is constantly in pain; either from his back or his leg. His regular dosages of pain medication don’t work as well as hoped so that is another doctor’s appointment to see about readjusting his medication. He sleeps at weird times so you never know when he will be up. He has issues with his bowels due to the medications he is on. He has these awful sweats that soak everything while the sweat beads on his body and runs off onto his furniture. He gets blazing hot and then shivers with chilliness. He wants to go out and do things but his body is letting him down… all of this trapped in a person who cannot express himself like so-called “normal” people.

If I wrote the truth about what does on here no one would read this blog. No one wants to read about downer subjects with a depressed attitude. It is easier for us, on bad days and “recovery days”, to just hide from everyone and nurse our own spirits back to health. You see, medical professionals tell us we can’t burn out yet. We need our strength for what is to come. It is going to be bad. Very bad. We need to stay strong for then…

Fuck cancer and especially Ewing’s Sarcoma. Fuck awareness and the bullshit that surrounds all the do-good campaigns. Stop talking about it and find the damned cure. No one. NO.ONE. should EVER have to suffer the way cancer patients do.

NO ONE.

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