Shout the good news, spin the bad...

At the end of all this, I think I'm going to go into politics. I've spent a week trying to work out the best way to spin this news. If Therese Rein needs a spin doctor, someone let me know. If not, there's probably still a market for it in the Palace with the corgis...

So, the good news first! And it is good news. Just because I have a bit of bad news does not mean I don't get to celebrate the good news.

It was all worth it! The months of nausea, pain, dislike of chocolate and all the rest of the chemo bleughness was all worth it. My scans came back last week and the results were better than anyone expected. All tumours in my system have shrunk - the scans can only pick up a couple of tiny tumours in my lymph nodes - about 6mm in size. There is only one tumour left in my adrenal system, and it's 13mm - again, tiny. So chemo has been a glorious success, much more successful than expected by anyone. Hurrah!

What are the implications of this? (Especially since there are still tumours, albeit small.) I have been looking forward to what I affectionately term my 'window' for a long time now - my window is the time that everything is normal, I can go back to work and be nice and normal (got to stop using that word, it doesn't mean anything). I'm in window at the moment. Window does eventually end when I require new treatment or when the cancer actually starts manifesting itself. The fact that chemo has been so successful means that the window should be months, if not years, which is much longer than I was expecting. Hurrah!

Shall I just get the bad news out of the way? I know you're waiting for it, so there's no real point harping on about how good the good news is. Maybe I'll harp some more after we've got the bad news out of the way.

Just over a week ago I started getting some really bad pain. It started in my chest, it felt like it was in my ribs. Went to see the doctor, couldn't find anything wrong. (Actually, we ruled out all of the really bad stuff - blood clots, pneumonia etc, and if it's not really bad, it's not that important what it really is.) Pain then moved to my neck the next day, then to the left side of my face, then to my forehead and eyes. When it finally moved up to my forehead and eyes, it became completely excruciating. I was physically sick the pain was so bad. So we toddled into hospital.

When doctors have absolutely no idea what's wrong with you, but it looks really bad, they tend to admit you for 'observation'. I think this is largely so that if you die, you die while being observed in hospital, so it looks like they did something responsible instead of sending you home. Apparently it's really bad if they send you home and then you die.

So I lost the argument and got admitted into hospital. Actually the hospital was full, and my doctor kicked someone else out of bed so that I could have her bed. It did mean that my bed wasn't ready until about 10 o'clock at night, by which time my mother was so tired and furious that she nearly completely lost it. (They had sent me home in the meantime, which kinda defeated the whole purpose of admitting me, surely. But what do I know.) Oh, and they also did an MRI of my head (again, trying to eliminate all the really nasty stuff, like blood clots).

Next morning my doctor rocks in, with his Serious Face on. Now, my doctor doesn't do the Serious Face thing very often. Previous conversation with doctor went more like this:
Me: No, I'm not coming into hospital. I have a hot date tonight.
Dr: Ooh, a hot and steamy date?
Me: No, it's too early for such things! What kind of girl do you think I am?
Dr: Jess, you probably don't have much time left. You really should be making it a hot and steamy date...

And yes, you vultures, of course I disobeyed my doctor's orders! (So I'm a difficult patient...)

Anyway, I digress. Back to the Serious Face conversation. On the plus side, they can't find any cause for the headaches (as I explained before, this is good news. It means nothing bad is causing them). So I can go home again. On the other hand, the MRI did show a new tumour in my left occipital lobe. Very small, about 13mm - the size of a chickpea. (Also the size of a marble, but I like chickpea better, it sounds more squishable.) Not big enough to be causing the headaches, or causing any problems at all yet.

The good news? We caught it really early while it's still really small and before it starts growing into important stuff and causing any damage. This also means that we can get rid of it - radiate the sucker and take it out. THIS IS TREATABLE, folks. We CAN do something about this one.

Unfortunately, my chemo regime doesn't really penetrate into the brain, so the chemo would have had no effect on it. We didn't know we needed it to at the time.

Oh, come on, how did you think this post was going to end? The promise of bad news with the mention of headaches and MRIs... it was an obvious an ending as a Mills & Boons novel (I even managed to mention rumpy-pumpy half way through. Not bad.).

And the headaches? Well, they're long gone now. They've served their purpose - they made us do the MRI, which found the tumour, which because we've caught it early, we can now treat and get rid of. So thank you, Lord, for sending the headaches. I do have some suggestions for improving efficiency, however. If we hadn't bothered with the new tumour, we could have avoided the headaches and thus the discovery of the new tumour. Just a suggestion, though, I'm sure your way is much better in the long run.

So what does this mean? Practically, it means I'm still in Brissie, and looking to stay here for a while longer yet. I have meetings with neuro-surgeons and radiation oncologists this week to discuss what we'll be doing. From what I understand, we'll radiate, then operate, then radiate some more.

If we can get this sorted out, then my window should be nice and long indeed. In the meantime, I am enjoying a nice window time, and then I will look forward to post surgery and radio window again.

Mama has gone back up to Mackay anyway, even though I'm not joining her now. She was getting to the point where she definitely needed a break, and she needed to be with Dave and Tim and to potter round the house and to feel normal again (oops, used that word again). So she's gone back up to Mackay. She did a truly amazing job, being the primary driving force getting me through chemo. She was there at all times, bullied and nagged me into eating when I didn't want to, making sure I bothered to get out of bed each day, and managing to make each day bearable, and most days enjoyable. 'One flat white and a serve of cinammon toast on turkish' is proving to be quite a lonely phrase. 'Two' sounds much better.

I want to share with you a conversation I had with my beloved Mama a couple of weeks ago at breakfast. This is why I love my mama so much and why I couldn't have done chemo without her.

Me: I feel like a great sucky octopus, just leeching off everyone and not giving anything back.
Mama: Don't be ridiculous. I wouldn't be here if you were an octopus and neither would any of your friends. You still manage to give lots back.
Me: (Tearing up) I wish I had woken you up in the middle of the night for you to say that instead of stewing on it for three hours.
Mama: You great silly moo.

So I'm staying with Dad now, and with Beata and Soph when they come back from Polond in a couple of weeks time. The changing of the guard, as it were. (For months Sophie has been asking "Jessie, why do you not live with us anymore?" and getting upset whenever I go home. I spoke to her on the phone the other night, and she seemed a bit put out that I was now sleeping in her bed. Can't make an omelette, you know...)

I don't mind radio and surgery so much. Radiation is just a daily visit for a couple of weeks, and this time it won't be accompanied by the pain of last December. Surgery, scary as the thought of someone drilling into my brain is, is still not too bad a thought for me - I have recovered fast and well from all my surgeries. So, while I can't say that radio and surgery are less 'invasive' than chemo, they are less 'life-impacting', if that makes sense. I have a quiet certainty that this is all fixable, anyway, for what it's worth. (No, that's not me 'being positive', it is just an intuitive conviction that this is just a glitch.)

So, spin aside, how am I really feeling? I'm not really sure. I've gone a bit manic since Mama left - I am constantly 'doing' something, I will never sit still and think. And that's kinda impressive given I'm not working. So maybe I do need to sit down and think about it and maybe (heaven forbid) get a little upset about it. Maybe. Maybe after I actually see all the relevant specialists and find out what's happening. In the meantime, I'm having a good time Cleopatra-ing.

Speaking of blind positive thinking, can someone please read The Secret and email me a review? I refuse to read it on principle - I don't read or listen to anything that promises that if I do this or that, then I can cure my cancer. (Okay, I read the Bible, but its promises are a bit more eternal than that.) However, my roommate in hospital last week recommended it, and I find it much harder to diss 'think positive' comments from fellow patients than I do from perky and vapid sales assistants. But I should know what I'm talking about when it comes to the latest 'think yourself healthy' nonsense. So if someone could email me a review, please, that would be wonderful.

So overall, the news IS actually good. Chemo has been a rip-roaring success. I am enjoying a great window of social activity (come on guys, I've made a couple of references to 'dates' now, you do the maths. A lady doesn't kiss and tell, you know.). If I must have a brain tumour (and it appears I must), then we have caught it early and we can treat it and get rid of it. After we have fixed that little glitch, I can enjoy what could potentially be a very long and happy window.

How was my spin? It's bloody hard to spin anything involving the words brain tumour, I'll have you know.

Life is good. I am blessed.

May God bless you as much as he does me. (Perhaps minus the brain tumour, obviously.)

Thanks for being part of my chemo journey. Welcome to the next leg of the trip!

With much love,

Jess

PS. In answer to your question, the left occipital lobe affects the vision. Maybe start practicing your reading out loud skills, just in case.

Party party party...

Just a quick post, I'm afraid... Just letting you know that my silence is due to a surfeit of enjoyable activities rather than a prolonged period of misery for any other reason. Certainly makes a nice change!

Have had lots of visitor swarming into Brissie - Troy and Debbie came down last week and I spent a fantastic couple of days with them. Adam came down for a wedding so I spent an evening with him. Saturday night I went to a cocktail party, and Sunday I discovered the hidden powers of anti-nausea drugs when combating after effects of said cocktail party. (Yes, I know that's not what they're for. One should always take one's perks where one finds them. Don't get preachy.)

And I have finally worked out the ultimate way to describe chemotherapy! Chemo is like having a perpetual hangover. You are extremely tired... nauseous... the thought of some foods will make you violently ill, but you crave other, probably inappropriate foods... while chemo does not provide you with flashbacks of embarrassing things you may or may not have said last night, it does provide flashforwards of unpleasant things that may or may not happen to you in the future. But I have to say, you get a lot more love and sympathy from the chemo. So you see, I was simply conducting research to better describe the chemotherapy experience. Plus it was a bloody good night.

I got my picc out on Friday, so chemo is officially over! I actually got to HOCA, and my doctor said "no, we'll leave it in for another week". So I organised a mutiny with all the nurses (I had a wonderful megalomaniac nurse who likes to pull out piccs. Makes her feel like a surgeon). Eventually I told the doctor I had a date and that I couldn't possible go with tubes in my arm, so he relented. And called out from across the waiting room "I hope you score!" I'm sure the old dears in the chemo ward think I'm a terrible hussy.

Scans next week to see how effective it has all been.

Anyway, that's my good news, chemo is all over, so instead of sitting at a computer whinging about my life, I'm busy going out and having a good time! So short post today!

Thank you all for supporting me through what has been quite a difficult time. Your continued love and support is what makes this journey not only worthwhile, but happy as well.

May God bless you as much as he does me.

With much love,

Jess

Six from six!

I highly recommend you stop here and go make a cup of tea. Or a margarita. This will be long. You have been warned.

So let's kick off with Sydney. Top trip. It was really good to go down and just feel normal for awhile. Not that I really know what normal is anymore. But I digress.

I stayed with Jacqui for the first few days, then with Brad, then with Rachel. Kinda passed around like a puppy, really. I flew in on Thursday afternoon, and traipsed out to Annandale to gatecrash the support group. Which, if I'd looked online, was not on that week. So then off to Jacqui's. Jacqui went to work on Friday, but had the afternoon off, so we did a spot of shopping before retiring to old faithful, the Swissotel, for the usual cocktail activity, followed by the usual duck down in Chinatown. Very agreeable. Over the weekend we went into Leichhardt for italian and gelato, but Brad sent me home again when he found out I had a cold. So we watched movies instead (again, very agreeable).

On Monday I caught up with an old college friend, Sarah, who moved to Sydney a couple of months ago. It was great to see her. That afternoon I was booked in for a dressing change out at Westmead hospital, and rang to see if I could organise a blood test too.

Now, normal people get colds. They say 'oh, I have a cold. What a drag.' People like me get colds. They say 'oh dear, I seem to have a cold. Better get a blood test to make sure that I have enough immune system to fight this so it doesn't turn into pneumonia and kill me.' Life could be so much simpler.

Anyway, I had enough immune system. What do you know, just a cold. Actually, the first time I've caught anything while on chemo, which is an excellent effort.

Monday night we went out to dinner for Nathan's birthday - absolutely pouring rain. I love Sydney.

Tuesday through till Friday I was staying at Brad's. Lots of movie watching - Brad even improved my mind with some 1970s Australian politics - and trips into the city to catch up with various people for lunches and coffees. It's quite nice being a lady wot lunches.

The last weekend I stayed with Rachel, and discovered the sheer amount of reality skanky rubbish that is available on Foxtel. To be fair, I also discovered how much food porn there is too. I love Nigella. We also went out to Milson's Point for brunch in the sunshine on Sunday, which was lovely.

Basically, my trip to Sydney gave me the chance to really spend some time with people there. I was feeling pretty healthy, I was definitely feeling pretty healthy, and it was a good trip for me, soul-wise. Thank you to everyone I got to spend time with. And thank you to Jacqui, Brad and Rach for bringing me down. What a superb birthday present.

Oh, and my mobile phone went completely kaput at one point. Started sulking and refused to receive text messages. So if you did text me while I was in Sydney and I did not respond, that is because my phone went berko. I apologise profusely.

Palace-dwellers... I have a present for you.

Her name is Restructure. She will need feeding every six months or so. Please keep her away from Russell.

And now onto this week!

On Tuesday I had my final ever chemo! I say that, and people look at me askance and say 'ever'? To which I say yes. It is highly unlikely that I will put myself through that again. Not to mention that it is highly unlikely that doing so would achieve anything. So there.

It's a slightly rougher chemo this time around. There was a bit of a stuff-up which resulted in one of my drugs being left out of the mix for the past three cycles. They intended to leave it out of the third cycle, but forgot to put it back in for the following two. So my last couple of cycles have been a bit easier than the first, but at the same time, they have probably been less effective. Not great. So anyway, the drug is now back in the mix, and I am feeling correspondingly crap.

But I should only feel crap for the rest of this week or so, and then I should start to heal and get some mojo back. Let's hope so.

In the meantime (whinge alert!), my bones are all burning, I feel like a stoned slug, and my mental processes have been put on slow play. I am hoping that my brain will turn itself back on again in the next couple of days. Never again will I tell a doctor that I have a 'parallel universe going on in my head'. Last time I said that I was on schizo pills for months. It is just a momentary surrealism. I am choosing to ignore signs that say 'Pregnancy Newsagency' (apparently it was pregnancy massage). I am choosing to ignore all the pretty patterns I see that are made up of knight moves. And the highly surreal chess game I had last night? All part of the process. Next week will be better. (Although I reckon there could be a market for a pregnancy newsagency.)

Interesting sidelight (on one of my favourite topics - and no, for once, I'm keeping schtum on that one) - on Tuesday morning, after weeks of feeling fine, before heading off to the hospital for chemo, I started puking. In the lead up to chemo, before any drugs have hit the system, I am nauseous. Go the psychological puke! In fact, by the time I got to the hospital, I was singing my new song 'Psychological puke, psychological puke' - to the tune of Indigeridoo from We Can Be Heroes. And I need to tell you, it is very hard to sing and retch simultaneously. You would think that knowing that the only reason you're puking is psychological would help, would maybe even stop you puking. Nope. It just makes you feel REALLY REALLY dumb.

So what's next for me? Well, I'm here in Brisbane till the end of May or so. Then I will go up to Mackay to 'convalesce' - the sort of thing rich but sickly ladies would do in that brisk mountain air in Switzerland. Either way, I need some time to come down off some of my drugs, regain some aerobic fitness, learn how to climb a flight of stairs, get some energy back - basically, what my doctor terms 'get my mojo back'. After that - who knows... I have some ideas, but I do not need to make any decisions for a little while yet. So there.

Evelyne, thank you for sharing your journey with me. I give thanks for you and your time on this earth, and I pray that the next part of your journey is one of great peace and joy. I pray also for your family as they adjust to life without you. Au revoir, Evelyne.

A largely factual post today, but I do have some exciting plans for this blog coming up in the future... so watch this space.

Much love,

God bless,

Jess xoxo