Wednesday, May 21, 2014

Life is like a box of chocolates

A Bertie Botts every flavour beans kind of box of chocolates. There are the Strawberry ones, the sweet moments that make your heart mushy. The Peanut Brittle ones, for those tough times when you feel like you may just break. The Minty ones, those times where everything is clean and clear. The Sick flavoured ones, self-explanatory. Marshmallow for those times when life is cushy and floaty. Then there are the Onion ones, those are the ones that bring you to your knees and you can't stop the tears.

Hello Onion chocolates! I have had some pretty Peanut Brittle time in my life. There have also been Onion moments. Right now it is Peanut Brittle and Onions..... Quite the combination!

The Peanut Brittle - knowing I have an exam on Saturday, an assignment to do with a topic I loathe the more I look at it and the opportunity to rewrite the previous one, two more exams before the end. My Husband is having some peanut brittle moments with his study as is my Son. It is the Peanut Brittle end of semester.

The Onion - Living with my father three days a week. He is shrinking away before my eyes. He finds breathing more and more difficult. Some days are better than others. I have some people ask me why his doctor is bothering to do anything to keep him going and my own doctor offering to write him prescriptions for opiates to make things more comfortable for him. Don't get me wrong, he isn't about to drop off the planet tomorrow, but then there is a possibility he might.

I have managed to get him to stop taking his insulin (was backed up by him diabetic care team yesterday). His BGL was getting far too low. It is better now, I don't have to worry so much about him dropping off quietly into a coma or dying in his sleep. I bought him a wheel chair some months ago so that he can go out with family or friends on days he isn't breathing so well. I have been looking at shower chairs as he is finding it more and more difficult to dry himself after showering. I think we have come up with an alternate solution, getting a chair for the bathroom so that he can sit after the shower and dry himself. Today were going to look at a bunch of wheelie walkers to see if we could find one that works for him so he could regain some independence and have somewhere to sit if he runs out of breath part way through a shop etc. We didn't make it there today, next time if/when we do, and he can hire to see if whatever he likes will work for him.

Last week I had to send him to bead each night. One of those nights he woke up at 1 and wasn't really awake but was not feeling 'right'. I took his temp, tucked the blankets in around his back and settled him down and he went back off to sleep. On the weekend I had to help him put his jacket on and thread his belt through the belt loops on his jeans. Last night I had to send him to bed. When he got there he couldn't get the last three buttons on his shirt undone, he couldn't get the bottom on his jeans undone either. So, we got the shirt and the jeans off, got the pyjama shirt on but couldn't manage the buttons, there he tried putting both legs on one leg of his PJ pants. Got him sorted out, lifted his legs into bed tucked him in and turned out the light. I left the bedroom doors open 'just in case'. I spent the next hour lying in bed listening to him moan in pain in his sleep.

Onion chocolates suck. I had a little cry as I went to sleep. Today, as I mentioned earlier, was a bad day for him. Tonight I came home to my own home, he didn't really want me to go, and I've had quite a bit of a cry (Including writing this). I came home to a beautiful, thoughtful and unexpected gift from my very dear friends on Flinders Island. I also received the tickets I bought for the three of us and Dad to see a show at the end of the month.

It has been a hard week. I have a full day of University tomorrow and another on Friday so I can study AND go to lectures. Saturday is exam day. Sometimes I feel like I would like to throw my hands in the air and run away.

I am glad that some of Dad’s family have started visiting him and or calling him. It brightens him up.

Saturday, May 17, 2014

3 years 3 months

Since the last episode…

I have had the great opportunity to meet and spend some time with other brain tumour survivors and their families. We had a lovely afternoon chatting over coffee. One pre op, two post op. I'm one of the post op the other is only 5 months out but doing really well in his recovery.

I have three exams and an assignment coming up. I am thrilled no end. It is that end of semester when the melt downs happen and the “why am I even doing this” and “I am not smart enough for this” come out of the cupboard. So far I have managed to push through. That isn't to say I haven’t hit any other those bottoms, more that I have found ways to have some rational ‘self talk’.

I have had much experience with Jerks this month. Two on the bus yesterday morning who thought F and C were both adjectives and punctuation marks. There is nothing quite like an hour of that to start your morning. To which I responded

Dear Jerks of the world,
Particularly the two jerks in the back of my bus yesterday morning. F**K and C**T are not adjectives or for punctuation. None of the little old ladies (or men ) or the mothers with their young children needed to hear that.
 I had the rare privilege of spending an hour listening to the tales of your criminal and sexual exploits.I spent much of that time considering how to approach you without risking being clobbered. Unfortunately I couldn't think of a way to do it and so spent part of the journey feeling guilty for being one of those people who don't act.
 I hope that there isn't a next time however, should it happen again, I will not be sitting there on my bum doing nothing.

The other was one of those middle of the shopping centre selling beauty products sales men. This was my response

Dear Mr 'I'm selling seriously over priced 'beauty' products',
Do I somehow give you the impression by my appearance that I care about beauty products? Why do you think you can suddenly convince me to buy your stuff and have a beauty regime? How in the name of all that is holy (and unholy) do you think you can sell this junk when I can smell your nausea inducing breath at fifty paces?
Beauty is something you cannot buy. You wear your beauty in your personality and soul. I do not wear make up, I do not hide the lines, I do not hide the scars or dye my hair. I embrace life and the privileged it is to have had one as long as it has been to this point and any point beyond this. Life is beautiful as is ageing.
Tear off the masks and be yourself, or keep them if that is yourself.

I am living with my Dad three days a week now. He has reached a point where many things are difficult for him, cleaning, cooking, showering etc. It takes an hour for him to get a shirt and pair of pants on some days. It can be pretty depressing and heartbreaking. I am watching him slowly fade away and suffocate to death. He has lots insane amounts of weight and his breathing is not improving in spite of antibiotics for super bugs. Though I do get to spend time with him and listen to him talking about his life when he was young before and after Mum. He also brings up his concerns about after he is gone, what he wants done when he goes and all those other necessary but morbid subjects. I had these same conversations with my Mum before she passed away and I have had most of those with my husband before my surgery.

Retired photographer, can you tell?

This last week I had another of those ‘isolated episodes’ which of course makes them no longer isolated. This time I was in my doctor’s surgery and got to spend about 3 hours in the back room with the nurse and the doctor popping in to check on me. She came in at the end of her shift and told me I should go to the emergency room. I was apparently sweating. My head was killing me, I wanted to vomit and my right arm was having a tremble. It was similar to the last episode but not as pronounced. I talked her out of the hospital trip. She did however record that she “Strongly advised me to go to the hospital”. I have had a headache and nausea since then but nothing hospital worthy and the arm thing settled down after I got home.

Olav has tagged me in the Five day quest so that is keeping me entertained.  I am still doing my 365 macro project though I have had to play catch up a few times now.

I hope you are all well happy and enjoying life!