Suddenly kinda good again...

One of the downsides about not having the internet is that I don't get to read the wonderful comments you wonderful people put on my blog. What a pick-me-up. And greetings to Colleen and Warren and any other new readers - I find it amazing how many people are actually reading my scratchings! (Even Ben and Rich, who were technically on Ben's buck's night when they posted - don't worry, I think it got much more debauched than reading my blog by the end of the night!)

I have had a mental breakthrough. Someone said how they always get depressed and broody on how shitty their life is whenever they get a cold or get sick or something. I'm exactly the same. If I'm feeling lousy physically (ie the past two weeks), everything will escalate and grow into huge problems instead of being in perspective like it usually is. This week I'm feeling great physically and therefore in a great mood. I am really hoping that being aware of this will help me keep things in perspective next week... then again, I am also hoping that my drugs will keep a lot of things under control next week too!

Had a great long weekend. Brad, Jacqui and Richard came up and we showed Brad around Brissie and spent some time at our old uni... even had a debate about medical ethics while lunching at Wordies! (It's a UQ thing.) Did all the Brissie things - Mt Coot-tha, New Farm Park, and Brad and Jacqui cruised on the CityCat. We also had a BBQ out at Jacqui's parents' place at Wellington Point which was lovely. It was so good to see my friends, and I really needed it. I had a good cry at the airport (after embarassingly getting stroppy at Richard).

It inspired me (and the fact that I feel well this week) to catch up with my Brissie friends and so I am having a very social week! I even played some chess with Michael yesterday, and while I appear to have lost a few neural pathways and my opening theory is all shot to pieces (pardon the extremely bad pun), I still enjoy it, so I've signed up for an upcoming club tournament! Have brain, will use! Nik, do you remember what the Jess Defence was? Was it e4, d5, ed, c6? (Yes, I know it's not sound, but it's an open position.) My inner geek is scrambling out...

I have made a depressing realisation. If I ever get back out into the dating scene, the poor guy is going to google me. And what will come up? Numerous mention in chess tournaments, cancer articles and a feminist article. If you know anyone who's ideal woman fits that description (sick nerdy feminist), for pity's sake PLEASE give him my number! At least this blog doesn't come up if you google my name - I know I've got a caravan of camels worth of baggage, and you too can read all about it in one convenient location! Although I have been thinking about putting a personal ad up - Single female to suit commitment-phobe. Guaranteed no long-term commitment! What do you think?

Anyway, I am having a great week. Everything seems to be in much better perspective, I have a little more energy and I'm feeling so much better. Bit of a glitch on the weekend - on Friday my white blood cells (immune system) hit rock bottom, making me neutropenic (absolutely no immune system). I started self-injecting a drug called Neupogen (into fat, not veins, chill...) which extracts cells out of the bones to boost your blood counts. It worked well, but gave me absolutely excruciating back pain. Thankfully Susan and I were doing a trial run for her hen's night while the boys had their buck's night, and spent a great evening in a hotel in the city. We had a wonderful time in the Pimp Suite, which had a huge spa next to the bed, so we sat in the spa (good for agonizing back pain) and watched movies, while consuming room service cocktails!

This week I'm doing quite a bit of footage for the ABC - trying to get some good happy stuff before poxy chemo starts again next week (they're coming to that one too).

Hope you are well... thank you so much for sharing this journey with me. I had a few goals with this blog, one of them was to help other cancer journeyers feel less alone. I didn't realise it would help me feel less alone as well. Thank you, and may God bless you as much as he has me.

Lots of love,

Jess

Suddenly kinda good again...

One of the downsides about not having the internet is that I don't get to read the wonderful comments you wonderful people put on my blog. What a pick-me-up. And greetings to Colleen and Warren and any other new readers - I find it amazing how many people are actually reading my scratchings! (Even Ben and Rich, who were technically on Ben's buck's night when they posted - don't worry, I think it got much more debauched than reading my blog by the end of the night!)

I have had a mental breakthrough. Someone said how they always get depressed and broody on how shitty their life is whenever they get a cold or get sick or something. I'm exactly the same. If I'm feeling lousy physically (ie the past two weeks), everything will escalate and grow into huge problems instead of being in perspective like it usually is. This week I'm feeling great physically and therefore in a great mood. I am really hoping that being aware of this will help me keep things in perspective next week... then again, I am also hoping that my drugs will keep a lot of things under control next week too!

Had a great long weekend. Brad, Jacqui and Richard came up and we showed Brad around Brissie and spent some time at our old uni... even had a debate about medical ethics while lunching at Wordies! (It's a UQ thing.) Did all the Brissie things - Mt Coot-tha, New Farm Park, and Brad and Jacqui cruised on the CityCat. We also had a BBQ out at Jacqui's parents' place at Wellington Point which was lovely. It was so good to see my friends, and I really needed it. I had a good cry at the airport (after embarassingly getting stroppy at Richard).

It inspired me (and the fact that I feel well this week) to catch up with my Brissie friends and so I am having a very social week! I even played some chess with Michael yesterday, and while I appear to have lost a few neural pathways and my opening theory is all shot to pieces (pardon the extremely bad pun), I still enjoy it, so I've signed up for an upcoming club tournament! Have brain, will use! Nik, do you remember what the Jess Defence was? Was it e4, d5, ed, c6? (Yes, I know it's not sound, but it's an open position.) My inner geek is scrambling out...

I have made a depressing realisation. If I ever get back out into the dating scene, the poor guy is going to google me. And what will come up? Numerous mention in chess tournaments, cancer articles and a feminist article. If you know anyone who's ideal woman fits that description (sick nerdy feminist), for pity's sake PLEASE give him my number! At least this blog doesn't come up if you google my name - I know I've got a caravan of camels worth of baggage, and you too can read all about it in one convenient location! Although I have been thinking about putting a personal ad up - Single female to suit commitment-phobe. Guaranteed no long-term commitment! What do you think?

Anyway, I am having a great week. Everything seems to be in much better perspective, I have a little more energy and I'm feeling so much better. Bit of a glitch on the weekend - on Friday my white blood cells (immune system) hit rock bottom, making me neutropenic (absolutely no immune system). I started self-injecting a drug called Neupogen (into fat, not veins, chill...) which extracts cells out of the bones to boost your blood counts. It worked well, but gave me absolutely excruciating back pain. Thankfully Susan and I were doing a trial run for her hen's night while the boys had their buck's night, and spent a great evening in a hotel in the city. We had a wonderful time in the Pimp Suite, which had a huge spa next to the bed, so we sat in the spa (good for agonizing back pain) and watched movies, while consuming room service cocktails!

This week I'm doing quite a bit of footage for the ABC - trying to get some good happy stuff before poxy chemo starts again next week (they're coming to that one too).

Hope you are well... thank you so much for sharing this journey with me. I had a few goals with this blog, one of them was to help other cancer journeyers feel less alone. I didn't realise it would help me feel less alone as well. Thank you, and may God bless you as much as he has me.

Lots of love,

Jess

Still sucks, frankly

Yup, still sucks. Would love to say I'm feeling so much better but it would be a big fat lie. Physically, I am feeling slightly better - at least I'm not vomiting constantly and I have something that vaguely resembles an appetite. Primarily for rice and soy sauce, but it's a start. Yes, I'm skinny now. Yee-ha. I thought I'd be a bit more happy about that, but I'm having trouble caring about a lot of things now.

That's my main problem at the moment. I don't have the energy to care about anything. I wake up and lie in bed trying to summon up the energy to get out. Then I sit on the couch and let my sainted mama make me breakfast and look after me. I'll read, but that's about it. I don't have the energy to even draw or organise my paperwork or anything. I am a big fat giant slug of a thing.

It's partly fatigue, partly depression, partly goodness only knows what. I'm just buggered. It's such an effort to do anything - little things like getting my sunglasses out of my bag when it's bright seem like too much effort because I'll need to put them away again, and it's just easier to close my eyes.

I just feel so uninspired. I feel like I'm marking time until I die, and can't even do anything constructive with my life because that would require energy, and I just don't have any. I hope this is only temporary.

People visiting cheer me up, take my mind off things, although I feel like such a blob with no intelligent conversation. Please come and see me even if I'm not very animated. It really does help.

At the moment I can't seem to get physically comfortable. My lower back aches, my leg aches and nowhere I sit or stand or lie can get me comfortable. I fidget constantly and I am just really restless. I can't relax. I'm reducing my pain medication so I'm probably detoxing from a minor morphiate addiction. If it's this bad when it's controlled I understand why people sell their bodies for heroin and don't try to get off it.

I am getting a lot of comfort spiritually. I went to the local Baptist church down the road from the motel and the pastor their is a great speaker, and there was a good, happy vibe. He came to visit me in hospital and the church has already started praying for me. It's good to feel part of a community again. And I'm growing a lot through my daily studies and prayer time, and getting so much comfort. My faith is the main thing that keeps me going at the moment, and it's the only area that I feel like I'm growing as a person while I'm so slug-like. Although I do feel guilty that I'm still depressed and slug-like when I should be grateful for the many many blessings in my life. And I am grateful, I'm just a little lost at the moment. God has been very good to me.

Amazingly, I feel so much better after my big whinge. Thank you everyone just for listening - I'm always amazed at how many people actually read this blog! I do feel better having got it all off my chest - I'm sorry to be so depressing, but I needed to say it all so that I would feel better. And thank you everyone for your comments - they make me feel like people are listening and sharing this journey and it helps to feel a bit less alone.

Although while I have my amazing, indefatiguable mama with me I know I'll never be alone. Even I, the verbose and over-sharing one, lack the words to talk about my wonderful mama. Dave is coming down for the Australia Day long weekend so that will be a time of rejuvenation for her. I'm sure she needs it - looking after a slug must be very emotionally draining.

Much love to you all.

Jess

Chemo

Well, it started, and boy did it suck.

We moved up to Brissie last Tuesday, and I've been pretty depressed and emotional. So glad my Mama is here to support me. When everything gets too much for me I just stop functioning and stare at the wall, and I'm so glad that Mama is here to pick up and keep going on.

On Monday I went in to have a portacath inserted into my chest. After an hour and a half of trying, the surgeon gave up. He couldn't get it into the right vein, it kept going up my neck artery, and he wasn't allowed to move my neck to pinch off that vein. So I came out bruised and swollen, with a new scar but no port. So on Tuesday I had a picc-line put into my right arm instead, which is like a permanent drip just above the elbow. It actually weirds me out a lot (it's stitched into the skin), so I keep in bandaged up. It's pretty good though, because it means no more needles, but I have to keep it dry, which makes showering difficult.

Tuesday afternoon I started chemo, and then had to stay overnight because I'd had two procedures (port and picc) in two days, so in order for the health fund to pick up the tab, I had to have an overnight stay (go figure - bureaucratic bureaucracy). So I did, and ended up staying till Friday. My haemaglobin levels are really low, so I had a blood transfusion on Wednesday, and the nausea and vomiting began in earnest then too, so I had to stay in to be hydrated, since I was keeping nothing down.

The first cycle of chemo is always a bit experimental - you don't know what side effects you'll have, and then they don't know which drugs will work on those side effects now. Hopefully we've worked it out a little now - there's one drug which seems to suppress the vomiting if not the nausea - so I feel like crap, but can keep fluid down. And another, dexmexadone or something, seems to be keeping the nausea under control, so I finally feel like a human being today. My concern with dexmex is that it's a steroid and will ultimately do very bad things to your body, so I'm trying to keep my dosages low.

It has been a truly awful week. Physically I have been feeling so bad, and emotionally pretty lousy as well. It's not a week I ever want to repeat. Thankfully I'm feeling okay this weekend, so I really hope that will continue. I will probably need some more blood on Monday, and my immune system will be completely down for most of next week, so I'll need to be very careful.

Next Wednesday night Brad, Jacqui and Rich arrive in Brissie for the Australia Day long weekend, so hopefully it will be a good relaxing weekend, hanging out at Jacqui's parent's place and showing Brad a bit of Brissie. I've also started having a weekly massage, and it really does help a lot.

Just wanted to post a quick update to let you know what's happening and also to replace the last rather depressing post. Not that this one is all that cheerful, but at least it's an update.

Hope to write again soon - internet access is very limited, but hope to post again soon.

Lots of love as always,

Jess

Moving Day

So today is my last day in Sydney. I am all packed and ready to go. And it has been one of the most miserable weeks of my life.

It's time to come clean. A couple of weeks before surgery back in November, Richard announced that he no longer wanted to be with me. The reasons are very complex, but ultimately, he's not happy, he doesn't want to spend the rest of his life with me, and therefore spending the rest of my life with me would be based on a lie. So we have spent the months since then transitioning to a friendship rather than a relationship, with considerable success (although I'd like to take credit for that for being so fucking mature about it all).

So as if it's not enough that I'm dying, I'm now dying alone. I feel like the chance to build a deep, meaningful relationship has now passed me by - I'm not exactly a great catch anymore. I'm sick, going to get sicker, can't have children and ultimately probably going to die young. Bring on the men.

Yes, my heart's breaking, but most days are actually okay. This is the main reason I'm moving to Brisbane - to make a clean break with Richard so that we can actually be friends without having to live in the same apartment, and to be closer to my family who actually love me unconditionally, not just when life is good and easy (bitter, me?).

I don't want to make Richard the villain in this piece. Yes, he's leaving, but his reasons are valid, I understand and accept them, and he has done an extremely good job of an extremely bad situation. One of the reasons it has taken so long before we make the final 'split' is because he continued to support me throughout my surgery and recovery and radiation. He is, and will continue to be, an extremely close and supportive friend. He's just not my life partner anymore.

So basically, packing up my life has been miserable. People keep telling me to do what I want to do, but the truth is, I don't want to do any of it. I don't want to have chemo, I don't want to break up with Rich, I don't want any part of it. I just want to turn back the clock a year and have my old happy life back. And I just can't do that. Life has marched on, regardless on what I want, and I have to march with it, making the best of what God has given me. And He has been very good to me, something I haven't lost sight of. He has sent me wonderful friends and family to support me, particularly my mama, who is again leaving her life in Mackay to come and care for me in Brisbane. I'm actually quite excited about moving to Brissie with Mama again - she is an awesome flatmate and we have a good time together.

So I fly up to Brisbane this afternoon, where Mama is already waiting for me. We are staying in a motel provided by the Leukaemia Foundation for a couple of weeks while we wait for a unit or a house to become available. If none does, then we'll make other plans. The Foundation has been wonderful again. I have a day of tests on Thursday, and then I get a port-a-cath inserted on Monday. I start chemo again on Tuesday, so hopefully a week to get my mind in the right space will be enough.

I have also started a journal, and am currently contemplating becoming more efficient and simply converting this blog to my journal. It will make the blog much more boring, but it will mean more posts more often and streamline processes to make them more effiecient! Anyway, I'm still thinking about it, because if I know I'm going ot post them straight away, I might be more restrained in my writing, something I don't want to do.

Either way, I will post again soon, probably before chemo - next time from Brisbane!

Much love,

Jess