Dying For Beginners

I have had a week from hell. That sounds melodramatic but it was the first time I seriously contemplated bringing all my loved ones to Brisbane to say goodbye.

You see, I was in pain. And quite a lot of pain. On Sunday night I was in pain, but figured I was going to HOCA for chemotherapy on Tuesday so I could stick it out a bit – it wasn’t TOO bad.

Monday night was absolutely excruciating. The pain was in my lower back, lower pelvis and was transferring to the front of my left leg. I couldn’t stand without pain, sit without pain or lie down without pain. Can you think of any new positions to be in that don’t cause pain?

Point is, I’m in pain and ccouldn’t get out of it. So I just couldn’t face another night on Monday like I did on Sunday. So we went to Emergency.

You would think that that would be instant get out of pain. It wasn’t. Monday night was worse than Sunday night. Pushed around in Emergency, trying to find a doctor who understood what was happening and trying to find a bed. I had a good doctor who was doing his absolute best (to the extent that he ’suspected a pathological fracture in my leg’ to get me a bed up in surgery – the chemo wards being absolutely full – but even so, I got no pain relief.

A few things were tried. Various combinations of painkillers, depending on who prescribed last. Everyone had their own opinion. Anyway, we got to a point where we are moving away from fentanyl and just using morphine as the main painkiller. Keep things simple.

So I now have a Graseby drip, which is a semi-permanent sub-cutaneous line under the skin. On the plus side, no more PICC line! On the down side, I now carry around a groovy syringe (called Gemma) in a not-particularly-groovy floral baggie.

I was allowed out of hospital on Friday after Dr Mainwaring pulled strings at Mt Olivet and the palliative care coordinators pulled strings at Blue Nurses. Dr M does not believe hospital is the best place for young people over the weekends. Mt Olivet is the Palliative Care organisation here in Brisbane.

So the Blue Nurse came on Saturday morning and I was in PAIN, Jason and the nurse eventually worked out that there had been a problem with my Gemma – wrong syringe, wrong dosage, wrong something or other. Jason has truly been sent by God. Not only is he the man I want to spend my life with, but he makes a totally kick-ass doctor/nurse too. I was in no state to take in any of this information, but he was.

Basically, because we it’s all sub-cutaneous (under the skin) we needed to be taught to use syringes and needles and scary things like that. I haven’t fully understood it yet, but Jason certainly does, and I hope to learn before next weekend when we go to Mackay (I hope!)

Today (Sunday), the Blue Care Nurse came over and then the Mt Olivet Nurse came over after consultation with the Mt Olivet doctor. I have been in this same excruciating agony since Saturday. The Mt Olivet team made some changes to my painkiller mix, adding some to target nerve pain. I slept all day and woke up feeling vaguely normal pain-wise. My let still hurts a little, but it is not excruciating.

Groggy like you would not believe, Parallel Universe-ing every 30 seconds, double-visioned, unable to read or concentrate (and why is the writing in my Bible so SMALL? I need to get a normal sized Bible like everyone else.) and this blog is taking me aaaaages.

Anyway, I hope that I will continue to feel slightly better and will improve every day. Tonight we realised that we’d really missed Em having not been able to see her all weekend so we took her out to dinner at Sizzler (classy, but she loves it). It was fantastic to go out an feel like a normal family again.

It is SO hard to remember that when we hit rock bottom that God is still with us, and I would like to say that I always remembered that He was there, but I didn’t. Sometimes I just got all worked up and forgot that God was looking after me. He will send me strength to get through anything he sends, and if it is his will, he will take away the pain as well. I just have to ask and believe.

And thus is the reason for my silence. I hope you are well, and I am looking forward to the next Horton At Home next Saturday 8th March. The next day (the Sunday) we are hoping to drive up to Mackay to spend a week there with my family and friends.

Be well, be loved, and love freely.

God bless,

Jess xoxoxo

PS There is a new book review and a new activity/retreat review on the site! Please check them out and post comments! And also, if you have read any books (like Jane’s!), or have heard of any alternative treatments, or been on any courses or retreats or found any good support groups (like Life Force) please submit a review! This site will only work if other people get behind it… so please let people know about it, comment and post yourself and suggest any improvements too!

You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.