Searching for peace in a mad world

Greetings all. The last couple of posts have been very factual. This one slightly less so. Blogging lately has been a bit of a chore, something that I need to do, and that's not what it was designed to be. Partly to keep people up to date, partly as a place for me to vent. Unfortunately the two can sometimes be slightly at cross-purposes - namely that sometimes there are things I need to vent about but I'm not ready to share them with the world yet! And when that sort of dissonance occurs, I tend to avoid blogging at all.

That said, the main reason I don't blog frequently is time - I'm so busy working, exercising, living that I just don't have time for 'frivolous' things like blogging.

Let's talk about time. I DO TOO MUCH. Shall I say it again? I DO TOO MUCH. And it's not that there's too much on my plate, or that life is too busy. It is that I, me personally, I, Jess, DO too much. I am constantly DOING something. I never stop DOING something. If I stop DOING, I might have to think. If I think, I might have to feel. If I feel, it might be painful. And I spend too much time planning. Even this whole cancer journey is planned as much as possible. I PLAN on having chemo in March. I plan to do things a certain way.

Life just isn't like that.

I've just come back from a marvelous retreat run by Lifeforce. I don't actually want to talk about it, partly because I don't have the words, and partly because the things I've learnt from that weekend can't be expressed in a way that others would understand.

Instead, let me tell you what I'm going to do (uh oh, sounds like I'm planning, but I'm not really).

I am going to stop doing and start being.

I am not going to read at all times, as a way of avoiding being and thinking.

I am going to spend some time every day just being. I want to create a new ritual when I wake up - to go outside with a cup of tea and just be.

In fact, I'm going to go be now.

Much love,

Jess

When the going gets tough, the tough get cranky

Well, a week is a long time, and two weeks is even longer! (Profound thought for the week.)

Surgery was successful. More than successful, it was the best possible outcome we could have had (short of going in and finding absolutely nothing). Dr B took out the ovary and the uterus. It was stuck down to the bowel, but she peeled it off and there was no need to operate on the bowel or anything like that.

I also let myself be talked into an epidural for pain relief. I was dead against it in the week leading up to surgery when the idea was first floated, but Dr B and the anaesthetist talked me into it. The anaesthetist told me that if I was older, he would just tell me that an epidural was part of the surgery, and the only reason I was getting the choice between an epidural and a morphine drip is because I am young and healthy. I just had a real aversion to sticking anything into my spinal chord, and it seemed to be tempting fate to do something different, with a new set of risks.

Very glad I let myself be talked into it though, because it was totally brilliant.

Numb from ribs down, so no pain, but not all foggy and stupid on pain-killers. It meant that I was up and more mobile a lot sooner but I wasn't really groggy and sluggish.

I was a bit distressed when I came out of surgery, but only because I had a huge amount of pressure on my bladder, so I felt like I was absolutely busting for the toilet even though I had a catheter in. I was very aggressive and demanding (it was actually quite painful) and they managed to increase my painkillers through the epidural, sit me up more so gravity could work and it eventually went away.

I had a good couple of days recovering, and then the epidural had to come out. So they gave me some painkillers, took the epidural out, and then I got nauseous. And sick. And nauseous. And sick. The painkillers spaced me out, made my vision blurry, and then I got really seasick and spent most of the day throwing up and just feeling generally crap. This was the day that most people had arranged to come and visit and so I cancelled all visits and just shut my eyes and pretended I was somewhere else. Yuck.

It improved overnight though and I went home on the Friday (surgery was on the Monday).

Now, everything surgery-wise has been improving brilliantly since coming home. The wound is really neat, the pain is minimal and everything is healing really fast. I'm recovering really well.

Unfortuantely, things are not so great elsewhere. Before I went into the hospital I had been having a bit of neck pain, which I put down to stress and tension (it's not the first time my neck has gone during stressful times). Unfortunately, while in hospital it got steadily worse, and when I came home it became truly unbearable.

Saturday night found us running around looking for a late night medical centre to get some valium to try to relax the muscles, it had become so bad. The valium did help all the surrouding tight muscles, but the really sore spot (on the right side of the base of my skull) was still really painful. This slowly brought us to the realisation that this probably wasn't just a tight muscle due to stress, but pain due to the metasteses in my bones. Very depressing realisation.

So we have been seeing the rounds of doctors to try to work out what the next steps are. I had an x-ray yesterday and I'll have another bone scan today, and then we are seeing both my surgeon and my oncologist Friday afternoon to discuss treatment. If it is still confined to the three bone spots that we know about (base of skull, clavicle and right femur), then we can just do a couple of blasts of radiation ('spot welding'). If it has spread even more throughout my bones, it might be time to start chemo straight away. Obviously chemo right now is definitely NOT what I want, so I am praying that it is still confined.

In the meantime, learning to live with chronic pain is a lot more difficult than I expected. I really can't think of anything except the pain. This is NOT how I want to live my life. So I am really praying that the pain will become more bearable soon. It is difficult for me and for those around me - Mama and Rich I think are very frustrated to see me suffer and to not be able to do anything to fix it.

This weekend Mama and I are off for a weekend retreat with Lifeforce. It should be a nice peaceful weekend, and I'm really looking forward to it. It's actually the reason that Mama came down in the first place - the whole surgery thing came after she booked flights down for it!

Well, that's about it for me for now... Will talk more later.

Please keep me and my wonderfully supportive Mama and Rich in your prayers.

Much love,

Jess xoxoxo

T minus 24

Well, tomorrow is the big day. It was supposed to be Tuesday the 14th, but apparently my surgeon needs to do an eight-hour surgery on that day, so she's been scrabbling around trying to fit all her other patients in. I'm booked in for Monday afternoon, so I need to arrive at about 11am and the surgery will probably be at about 2pm

We (Mama, Rich and I) have spent most of the weekend with Kirstin and the Australian Story crew, getting some footage and doing interviews.

I'm starting to wish I'd taken a few days off before going in for surgery. It's been a bit of a frantic weekend and I feel like there's all this stuff I need to do before I go in for surgery tomorrow. I just haven't had time to write emails, make phone calls, send text messages and I feel like there are a lot of people I'm just not going to have time to speak to tomorrow. If you're one of them, I'm very sorry.

I also feel like I need some time to process what's happening. I haven't really had time or energy to sit down and really emote and process all the implications of the surgery tomorrow. I've been working hard in the lead-up to the time-off I'm taking and I've just accepted matter-of-factly that the surgery needs to take place, therefore it's happening. I feel like I need to grieve the fact that I am in fact having a hysterectomy, and that means DEFINITELY no children will ever be born of my body - but I'm just not ready to grieve yet. I suppose it doesn't really matter whether I grieve before or after the surgery - it has to happen either way.

I'm just a bit frazzled. I want to lie down, take it easy and read, but there's all this stuff I feel like I need to do. So I'm going to blog quickly, write a few emails, send some text messages, maybe make a call or two, and then I'm going to just take it easy and be peaceful.

It's been awhile...

Hello all,

Well it has definitely been awhile, and that is more due to not enough time to post rather than nothing to say. It is also because so much has happened and I have wanted some time to process it all myself before I started talking about it.

Well, I had a scan in early October, and it was pretty bad. The tumour in my ovary has become pretty big (about 6x9x11cm) and is starting to impact on other organs. The tumours in my lymph nodes are getting bigger and more numerous, but no problems there yet. It is also looking like it is spreading to my bones, but again, not causing any problems yet.

So next week I am going back in for more surgery to take out the rogue ovary (and probably the uterus as well, since it looks like it's gone a bit troppo as well). So a full hysterectomy. That means definitely no children, but since a) none of those bits are working anyway while they're riddled with cancer and b) not going to be around to bring up children, that hasn't been as bit a deal as I thought it would be. And if I do get my miracle, then I've always been drawn to international adoption anyway.

So Tuesday 14th November is the big day. Mama is flying in the week before and will be here to support me through it again. It's pretty much the same surgery as last time, same scar, same sort of recovery time. At this point I will probably be taking four weeks of work and then doing some work from home for a week or so until I can go back to work.

The point of this surgery is to get rid of the immediate problem - the tumour in my belly. If the surgery is successful it's just the lymph nodes and the bones we need to worry about (for now). If not, then the tumour in my belly will start growing into other things (bladder and bowel and whotnot) which will speed up the whole process. However, I am fully expecting a very successful surgery (since we've basically already done it before earlier!) and I actually truly believe that it will be successful, I'm not just being blankly cheerful!

There is much much more to talk about, but I just wanted to break the blog drought and get started again. I want to talk emotions and stuff too, but I might save that for another blog.

In the meantime, please pray for a successful surgery next Tuesday!

As usual, apologies for being such a lousy correspondent... that will change while I have four weeks off to recover!

Much love,

Jess