Hospital Day 5: Did They Take The Right Part of My Brain??

That is the question my brother and husband asked when I came out of surgery. Did they take the nasty gene away? I think you need to have a little bit of bitch to survive though, so I am happy with what they removed.

The surgery wasn’t so bad, nor the recovery. I was up and walking as soon as I could. I have no neuro issues. I cut laps around the ward just after I was bought up. 

The worst part was the breathing tube. I couldn’t swallow and I remember trying to signal that I wanted it out. ‘No, no not until the doc gets here. Well just give you some more profofol to calm you down.’ Hang on! ? Isn’t that what killed Michael Jackson?? Oh well, best enjoy it then. 

While I was being wheeled in to theatre I tried to listen to the song I was singing. I was humming ‘Roar’ really softly. No words, just the tune. It was calm, not angry, gentle and soothing. Very different to last time. When I was screaming it. 

After they got my tube out I had to go to have a CT scan. On the way there, I knew they had taken something out of my brain because I was singing an old ‘CC’s’ chip ad from the nineties. And I have no idea where that came from!! Or the significance. 

Backing up tomorrow for the second op on the front of my brain. I told Vas and Alex that they have a second chance to get rid of any nastiness. Hahah 

 
Ps thanks for the love and support. I am hearing it loud and clear.

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Hospital Day 3: Videos and Surgery

Today is the first of my surgeries. Depending on how I recover the next will be on Thursday. 

Seeing as though they are removing bits of my brain I wanted to post the final cut of the video I did for work. It was shown last week and I got to see it just before the headaches began. I haven’t had time to ask if it’s ok to share it on here, if I am infringing copyright laws, but today I don’t care. If it needs to come down, it can. 

I am so proud of this video. It fills my heart with such pride it wants to burst. I worried that my answers were rubbish, too clinical, too robotic. I wasn’t sure there was any usable material. My fears were allayed immediately. I love the delicate, sensitive approach they took. I guess that came partly down to me too as the subject matter.

Hope you find it as uplifting and inspirational as I did. I think it is truely beautiful. 

http://we.tl/KYdtxXH0q1

  

Hospital Day 2: MRIs, Consults and Wandering Patients

Well it’s been a whirlwind kind of weekend. I’m still processing. Trying to get me head around it. My headaches have been controlled by the steroids for the time being which gives me some thinking time. It also gives me a chance to write instead of talk. At the moment I prefer the silence. 

I had an MRI yesterday and I didn’t know whether there was a computer game going on in my head, or I was on a construction site or if I was at a rave party. It was so noisy…. I’ve had one before but I don’t remember it like that. 

The scan show two big superficial lesions that need to come out quickly. It also showed smaller more inoperable type lesions that will need some other type of therapy. They are more of a concern to me than the big ones. But that’s me jumping to the future. I want to concentrate on the here and now. 

We cause pandemonium on Level 4 North last night by deciding to seek an outside opinion from a world renowned brain surgeon. We saw him this morning and have more information and options. As I did initially, I sought out a variety of opinions and then I will make a call on what’s best for me. 

Being in hospital this time round I feel calmer. I feel like I know when to ask and how to say no without feeling guilty. I am meditating between visitors. My food is better controlled. It’s different, yet the same. The uncertainty is still there. I have to have operations but when and how. I have cause arguments between specialists. I have had the pick of the rooms. I have the ultimate support team. I am in the right place.

If I was to have been told my news previously (or if it was someone else) I would have not given them much of a chance, but being here in this position it doesn’t feel like it’s insurmountable. It doesn’t feel like I can’t turn it around. It’s strange but that’s how I feel in my heart, and in my head. 

I have third consult this evening. And we will need to make a decision by tonight because I will prob have surgery tomorrow. 

For now I am relaxing, meditating, playing Mr Squiggle on the nurses board and being incredibly amused by the patients on my ward that wander the halls without pants on, or make my room there own while I am out and eat all my food. 

The day before i was admitted there was a whale 30 metres of the beach. closer than I’d ever seen before. alex found this balloon downstairs. i think its pretty fitting

O oh…

Last night I thought my head was going to explode, so this morning Alex took me in for a brain CT, turns out I have three new lesions in my brain (to match the three new ones in my lungs). 

It’s all a blur of doctors, nurses, injections and options. I’ve been admitted to manage the pain and deal with tumours. I have an MRI booked for tomorrow. And maybe I’ll get to see the neurosurgeon. I might have surgery or radiotherapy. Or both…

Cycle 1 Day 1: Time To Go Again

I start on treatment again today. I had a long talk with my oncologist about my pain, about sweating, about the headaches. I get the feeling he is just trying to control it now. Not get rid of it. Alex said that’s his job. Getting rid of it is up to me. Sometimes I am blown away by his insight. It’s true.

While we were in Fiji I was having a whinge to Alex about his behaviour. Everything in excess, everything fast. Do, do, do! He reverts to teenage Alex when he is on the island. It is something I was struggling with. I couldn’t keep up.  But I was surprised when he shared with me a small piece of his heart. He said that nothing in his life had ever felt more real, given him more focus or been more important. Some times I wish I felt this way. 

My biopsy results showed nothing new. Except a more confused histology diagnosis, which doesn’t really match my history. More testing needs to be done. And so the plan is too start this chemo for two cycles and then see…

Why do I feel so flat!??? This is the longest I’ve not been on treatment. My tumour has obviously flared during that time. When I think about ‘no more options’, I always come back to ‘well I’ve always got me’. It is an option, but today I think back over the past several weeks of ‘no’ treatment and I wonder about me. I wonder about relying just on me, my body and my mind.  Sometimes I am weak. Sometimes I play the victim. Sometimes the pain takes hold and I just can’t. Maybe it’s post holiday blues…. I am missing the warmth and sunshine of Fiji. 

———

Getting hooked up now and I already feel better, stronger. Ready to go once again. 

  

Characters In My Life: Jenelle and Jayson

Jayson 

Jayson lives on Fiji time. Slow, consider, possibly a few minutes late and always the last to finish his meal. My late father-in-law said of a teenage Jayson that he could write a book called ‘Waiting For Jayson’. 

He was Alex’s friend but as we went to school together I have known him for over 20 years. It has only been in the last 8 or so years has he become a constant in our lives. And since becoming sick I couldn’t have ask for more from a friend. Anything we needed was on offer. Anything Alex needed in terms of support, a distraction, a laugh he was there. 

I never really understood (or took the time to get to know) younger Jayson. He wasn’t in many of my classes (maybe I’d written him off for not being intelligent enough and therefore not worthy of my time). He also didn’t have blue eyes therefore he wasn’t my type, which is much more likely the cause of my lack of interest because I have come to love adult Jayson for his many quirks and his clever mind. He is well-read, an astute businessman and a doting dad. But what I love most is his ability to be true to himself in a fast-paced world. 

Jennelle

If Jayson is the turtle, the Jennelle is the hare in this love story. Frenetic pace, sharp wit, sharp tongue. She is always a few steps ahead. Sometimes a few years ahead. Behind every good man…. Isn’t that the saying??

I first met Jennelle the day before her wedding. She picked us up from the island’s airstrip in her Barbie pink golf cart with her name emblazoned on the side. Buxom, peroxide-blonde, and bejewelled. 

Jayson had called Alex a week before the wedding and said in his typical laid-back, casual style ‘hey I’m getting married in a few days, do you want to come?’ I had been travelling constantly for many years at that stage and was always up for a last minute trip, so I booked. 

As time went by I slowly got to know her and she me. They were regular visitors to Europe and therefore we saw a lot of them when we lived in the UK. For some reason I think she liked me…. I don’t think I was a threat. I wasn’t your typical island wife. I was smart, not a great beauty, not blonde. And I saw through something that most people couldn’t. 

I worked her out on my wedding day. As the sun rose, and we downed shots of tequila greek style (with orange and cinnamon, instead of salt and lemon) I realised that this woman with a tough exterior had a soft core, and a heart of gold. I thought she was playing a role that was given to her when she first met people. She did nothing to change that assumption. But I saw through it. 

I often imagine her in battle fatigues. I know I can learn a lot from her. She is strong willed, determined and stubborn as all hell. I have those qualities too, but don’t know how best to use them some times. I get a lesson every time I am in her presence. 

In Between Cycles…

Yesterday I had a biopsy on the new lesions in my lungs to see if they have a different genetic make up to the original tumours. 

It was easy last time, they just removed the bugling lymph node in my neck. This time it’s a little more complicated. All my lymphs are clear, so they need to access tissue from within my lung. But how do you do this without cracking my rib cage open… 

Turns out it is much less invasive than I thought. They look at my scans, pick a tumour to target, then using a CT scanner they find the spot, mark me with some texta and then make an incision. 

I am awake through out. It hurt, it still does, but I knew I was high when I kept telling the Dr that he ‘had SUCH A COOL JOB!’ It was like I was his number one fan. Maybe I was. I had waited for him specifically to get back from leave to do the procedure. The other Dr that was on offer put my port-o-cath in. I was not letting him near my body again. I am reminded of him everytime I see the scar on my chest. 

The results will be back in on Wednesday, so in the meantime, we made a quick dash to Fiji. One, because its Alex’s birthday (and it’s one of his most favourite places on earth) and two, it gives me a chance to recover in the warmth, close to some kind and caring friends.

So I am on Fiji time for the next few days…