Week 4.25 of Radiation:

Week 4.25 of Radiation (the final week):

(Please note: if you are reading this blog for the first time, you need to start with the post entitled " The reason" which can be found in the 2011 Archive)

Blog entry preceding this one is "Week three of Radiation".

Monday:

Lily: Oh my god! It's the last week. *sigh* Radiation is exhausting and I am not even the one having it. And everything about it is bittersweet since we know the cancer is no longer curable. The excitement of finishing the treatment is gone because instead of the hopeful " It's cured!", it may mean that J.J has had enough of treatment altogether and decide to let the cancer have it's way. And that's not being negative. It's just a cold hard truth that at some point in your life whether it is yourself or someone you love who is battling a terminal illness, the day will come in which they say " I'm done...I'm done with treatment!". It will freeze you to the floor, your heart in your throat, yet you swallow because you know; you see the road map of pain etched across his eyes, in his face, across his entire being and how could I ever ask him to endure it to spend a few more days with Arwyn and I.

That's a thought that goes through my head. I do not tell J.J (he may read it here obviously), for he already knows - I've already told him a few times since the diagnosis that if it ever got to a point in which he decides he has had enough...to just let go, and not worry about Arwyn and I, for we do not want him living in the horrendous pain that he is in.

Again, I want to reiterate that I'm not being negative, we're just facing that possibility - if not today, then perhaps next week or next month, it just depends.

I guess my thinking this morning is because of J.J's night last night. It wasn't good, it really wasn't good but he can tell you...

Set my alarm for 5:55am. Got dressed, moved the bike into the lounge room and started pedalling while watching the movie " The Fifth Element". I did half an hour on the bike, the hips start pulsating by the end and I swear I can feel things moving or popping in my hips. It's not painful, it just lets me know that I have started exercising to accompany the healthy eating. 

By 7am I have finished showering and woken Arwyn up for breakfast and a new week of school. She doesn't want to go and tells me that, " Mummy, tomorrow...tomorrow I think I'm going to have a headache, just so you know that I can't go to school tomorrow. Okay?"

Yes my darling, okay. 

 We arrive back home and my only little charge for the day is the cutest little boy. He and I set up some trains and cars for him to play with while J.J prepares for his Superbowl Monday. By lunchtime, the little one is fast asleep and I use the down time to catch up on several daycare projects.

J.J.: Yep, its true, Sunday nights sleep sucked. But, today is Superbowl Monday! Woohoo, wings, fried chicken, fried cheese, tequila and football. I don't particularly care for either team, but the Giants must lose because they knocked the Packers out.

The Giants didn't lose.

I'm feeling much better today.

We get to radiation on time only to find out the other machine is running an hour behind, which means we will be running behind. It is only fair after all, can't have someone wait and wait and then have us just walk straight in. If it was reversed I'd be grateful that I was being assisted.

The great thing about radiation tonight, even more so than this being the last dosage on the arm - is Arwyn.

I'm the centre of her attention. She's even climbed up and cuddled across my lap and arms. She hasn't done that in ages and it just feels so loving and good. I'm going to be having warm fuzzies for weeks because of this. They say laughter is the best medicine? Well, they obviously don't have loving little girl cuddles at hand.

Tuesday:

Lily: Up at 5:30am, 2nd day to get up early and do some exercise (alright who are you and what have you done with the real Lily? :) It's a full day today with three two-year olds who keep me busy busy busy yet I get some good footage of them for their parents and while they sleep get to finish some documentation for the EYLF (Early Years Learning Framework - a National Guideline for all Early Childhood education).

The day is routine yet by the time we have to go in for radiation, I am almost falling asleep at the wheel. I wind the window down, tell myself to wake-up ready to bitch slap myself and we make it to the oncology department without incident. While J.J is in for his treatments, two of the nurses stop by the waiting room and give Arwyn a red polka dot teddy bear which is named Daphne.... with the exception of Arnie and P.J (two bears Arwyn has had since birth), 99% of the remaining stuffed toys are named " Daphne" - from Scooby Doo (of course).

She's very excited by the gift and asks if she is allowed to sleep with it tonight once we get home.

With coke zero in hand, we drive back home missing a fizzer of a storm and settle in for the evening.

Wednesday:

Lily: The bone disease that I have is called "Polyostotic Fibrous Dysplasia" (PFD) - look it up for a clinical definition - my definition "spongy fucked up bones that causes easy fractures and deformity, especially in my face". Why did it have to be in the face? I don't fucking know, but it sucks.

We are up early to get Arwyn to before school care and drive to the same hospital where J.J is being treated. My appointment is at 8:50am, we're there at 8:30am and settle in for a wait. We plan to see a movie today since it's a day off from work for me and think we have time to do this before it will be time to pick up Arwyn. I started seeing these surgeons when the blurriness in my right eye was getting annoying. Blurriness possibly means that my PFD bone may be pressing on my optic nerve. This was roughly three years ago and surgery was put off at the time as we were beginning fertility treatments and my surgeons felt that the hormones in the fertility drugs were playing a part in keeping the PFD bone active, forcing it to continue growing. I say that that is erroneous as the bone was continuing to grow long before I begun any fertility treatment. Since we chose the fertility treatment over my bone disease, we went away and waited. A year later, we went back for review and since we were still deciding about fertility and J.J was just getting diagnosed with cancer, we again left any surgery for me in view that cancer came first and we still had a glimmer of hope of IVF.

Cut to present day: We all know what's happening with J.J and IVF is no longer on the table. No fertility drugs have been in my system for over eighteen months and the pain in my head/jaw is getting unbearable. I literally have to to pry my bottom teeth out of my upper right hand side gum as the upper jaw angle resembles the arrow angle below.

 ➘

The part that always kills me is that when I was 21, I had perfectly straight, healthy teeth. The only thing that was keeping them straight however were the porcelain braces I wore as my bone keeps growing unlike the average day person. 

So, with pain increasing, migraines increasing, the decision to have surgery now while J.J is still alive is made. If we wait until "after", that could be another year before anything is done. If we do it now however, at least Arwyn still has one parent to comfort her should anything go wrong.

At 10:10am, we finally get into see Dr Reid (Lead surgeon). Surgery is good to go. A week and half away! YES! Then he explains the bad news. He's removing three more teeth (these are the front ones). And yes, they are crooked, and yes probably a nerve thread away from dying but at least it gave the illusion that I had teeth. And now I have to loose them - and the possibility of getting false teeth is greatly reduced since Dr Reid has had no experience with a FD patient (the disease is rare) and using dentures in a diseased jaw. Fabulous. Fanfrickingfuckingtastic! So on top of loosing teeth, I wont even get replacements. Confidence plummeting - ugly high school girl returning to the psyche!

Tears.

Tears.

Tear -

stop crying!

I sign the waivers saying that if the hospital should kill me that they are no way at fault - blood loss possible, infection possible....I understand, I understand. Can we go? Yes....marvellous, I'll see you next week, I'll be the one laying down on the table, you can't miss me.

J.J and I are out the door and off to the movies in style - Gold Class cinemas, comfy lay back lounges, cheese platters, beer (for J.J), big bowl of popcorn and Sherlock Holmes #2. Wonderful!

We get home and I start the military operation to organising things for my stay in hospital as who will look after Arwyn while I am out of it? J.J can't....well he can, kinda... but she's 5, always on the move, always chattering, she'll have him roped and hog-tied in under five minutes and then she'll be on her own - the weight of the world on my shoulders just doubled. 
Thinking....always, always thinking.

J.J.: Today, is Lily's day. We go and wait and wait and wait for an appointment for her instead of me. The news is excellent, surgery! How often do you get to say that? It means a lot of quick planning on our part to get things in order on such short notice but better sooner than later. We head on off to Gold Class, popcorn, cheese platter with candied almonds that tasted awesome, Peroni's. Then lunch at Grill'd. It's been an awesome day.

Thursday:

Lily: Routine day until the afternoon.... panic attack ensues.... can't explain it.... hand shaking like anything, sore. Tired.

Played cloud watching on drive home - love this family moment. One cloud offered up multiple persona's.

J.J: It was a routine day. The dexamethasone is wrecking havoc with my sleep, never fully

asleep, never fully awake. Radiation is running late again, but nothing too bad. Only two more treatments to go. On the way home, the three of us partake in an awesome game of cloud watching. It's the little things that make life worth living.

On the way home we stop at a grocery store and I run into one of the officers from work. We chat quickly, I have to explain that I won't be coming back, not likely at least. As happy as I am to see him and anyone else from work, sometimes it pains me to be honest. I truly love everyone there, I love the camaraderie and fraternity. I only wish I could repay the same in kind.

Friday:

Lily: Two radiation treatments to go. Routine, routine, routine. Trying to work myself into military mode to organise.

Shit! -  Radiation for tonight got cancelled due to power failure.....radiation will now be extended to include Monday and Tuesday. Bugger!

J.J.: Well, it was a busy afternoon, when we got back, the phone rang from the radiation clinic telling us that there had been a power failure and they were trying to get it back on. An hour later and they ring back to say that they still can't get the power up and running. We went out to get Indian take-away, which sadly turned out to be very disappointing. I normally give a place more than one chance, but not this time.



Saturday:
Lily:
Swimming for Arwyn
Dancing for Arwyn
Marathon cooking session to get Arwyn's meals cooked for when my Dad is up to help us out after my surgery. Really trying to make things as easy as possible. My right eye starts to blur, a headache is forming at the base of my skull... I'm seeing white spots and have this genuine unwell feeling. What the fuck is going on with me? I tell J.J he has to put her to bed as I can barely managed to stay standing up. I shower and then collapse on the lounge....the lights are too bright, need darkness.
Sleep I'm coming.


Sunday:


Lily: Business paper work done. Headache  and right eye again blurry. Cutting this short and will continue this week to include Monday and Tuesdays of this coming week as radiation is finished on Tuesday.


Monday:


Lily: Oh my god, what a morning, and it's not even 10:46am. Two new clients have started this morning, with only receiving notice for one of them at 7:15am  - Busy busy busy. The children's roster is almost full again and while loving it, it just means I'm flat out until the kids are either sitting down to eat (such as this moment) or sleeping (which will be in an hour and half's time). I think I missed breakfast - not good. I've been trying not to skip a meal in view that it stuffs up the eating healthy section of my day. 
Hopefully today will be just as routine with radiation tonight.


8:58pm - The day was long - that is all.


J.J.: It was meant to be the last day of Radiation treatment, I'm secretly hoping that they are going to tell me not to come in the next night, that one more or less really isn't going to make a difference. I really start to wish this was the case when they tell me I will be the last patient tomorrow at 8:30pm.
Crap. Can't keep Arwyn awake that late on a school night - it would be close to 10pm before we got her into bed. We make arrangements for personal hero Corrina to take me in again.
Corrina you rock.




Tuesday:


THE LAST DAY OF RADIATION!!!


Lily: Blah - That is all.


Oh... almost forgot, thanks to Corrina who is driving J.J in for his last radiation treatment at 8:30 tonight. You're an angel dear - mwah! xx P.S. Apologies for the creepy man standing out the front of our house on the other side of the fence, I swear we are not affiliated with him in any way shape or form - and if it helps, I wont be able to sleep tonight knowing the boogey man is out there.


J.J arrives home around 9:30pm, by 11:00pm we are in bed together and that's when another conversation about death and dying take place. I'm brought to tears again and cannot sleep. I turn the TV on, and I surf the channels watching an episode of MASH and the ending of the movie Dead Calm. J.J and I hold hands - he's awake and I suspect due to the dex that he'll have an AWAKE night.... he excuses himself to use the bathroom, I turn over and try to sleep.


J.J.: There was much levity on the trip to and from radiation - thanks Corrina. The radiation itself is routine, the staff all chatty and fare-thee-well wishing. The typical jokes of "I do hope I don't have to see you again..." Ha HA ha - yes truly original.

I get home and I'm tired. Liv and I do have a rare death and dying conversation. But, sometimes they need to come out. It was a lousy night, the dex did keep me awake, its a mania. It's like being on speed - in fact it is speed. So, I wind up lying in bed, reading - reading the wrong book at this point in time. Fyodor Dostoyevsky's Notes from the Underground. It's a first person stream on consciousness narrative. I can't help myself - my brain starts to rattle off in the same fashion, remembering or at least juxtaposing elements and events from the hungry years into the same story line. I compose long, rambling emails to friends, long blog posts, anything I can think of. But, I can't be bothered to get out of bed, go to the lounge and fire up the notebook. Three hours later, the flow and coherence of what I wanted to say is gone. Nothing that I thought sounded profound at the time of the mania is left.
Probably for the best. I actually wrote a passage using halcyon in context. No one should have to suffer like that at my hands.
The good news is tomorrow should be a crash day. The dex has kept me up for close to 60 hours now, so I should sleep for 5 hours and let the brain relax to mush.