A reprieve of sorts


Last weekend was so hard and so sad I came to dread phoning Jem or Mum and Dad. I just didn’t want any more sad, horrid news.
I know that it won’t always be good news, and that when someone very close to you has embarked on a slow journey to death, there will be awful, awful, sad, dark times. (well I hope it will be slow, but it has to be slow and OK, not fast and horrid).

I guess the bad news last week just jolted us back to some sort of reality that we were trying to avoid and I suspect that that is a completely natural reaction to have. And a coping mechanism as well. And I guess it’s also natural to be somewhat relieved to be away from the intensity of it all, even for a short week or so, but I am so glad to be home and to be removed from the immediacy of it all. A break to recharge. But then at times I feel guilty for feeling so relieved. All natural thoughts I am sure. I just don’t think I could have sustained my dark sad thoughts any longer at this time.

It was so hard leaving Jeremy on Sunday. I could tell that he was anxious and quiet and sad and he held me and cried and said that he was just getting really anxious about me leaving. I just cannot imagine what it will be like when he goes. I want it to be beautiful and gentle and at his time.

I naively started a post a few weeks ago – and named it – ‘weird but wonderful place’, where I started to write about how wonderful it was spending time with Jeremy, this really special, unique time that we are sharing. It seems so selfish and silly now, and I’m glad I didn’t post, but I guess that’s the whole thing with this particular blogging journey? It will progress and shift and change. And wouldn’t it be great if it was just weird and wonderful, not hard, and sad and painful. But in retrospect there have been weird but wonderful times. We are sharing and experiencing things we never expected nor wanted, and i will never forget that.

News yesterday is that his surgeon was quite positive. Didn’t seem to think that the latest metastases were as bad as they looked and that Jem will go into hospital on Monday 2 May for a spinal decompression. Pain is now being managed somewhat better by morphine, which is taking the anxious edge of Jem, and I’m pleased about that (although strangely dad is worried about the morphine…).

I have mentioned before how busy you are being ill. last week Jem must have received 25 cheques from Medicare – that all need to be sent to the particular surgeon or service, a check made to see if can claim on private health insurance, the difference paid etc. honestly it is such a clunky stupid system.  We are not stupid people, but the system is just terrible, confusing, hard to understand and negotiate. We are just sending cheques out, keeping receipts, paying some stuff and just letting most of it work itself out. Hopefully. How do people with poor English or poor understanding cope? I think the system seems deliberately designed so that most people don’t know what is going on. Even the accounts people in some of the speicalists rooms just sigh when we bring in a bill.

More busy-ness for Jem tomorrow – an appointment with an oncologist, radiotherapist and a psychologist. No time to be sick!

And there is other non related health busy-ness for him as well. Just before Jem got sick in Feb, Jem and Max bought the basement flat in their building that they intend to use when family and friends stay. There is some work that needs to be done – a kitchenette installed and the bathroom fixed up – so amongst all of this health related stuff, there are meetings with architect, builders, decisions to be made about sinks and cooktops and toilets. All seems crazy and completely wrong at times – but then it’s not just a matter of giving up…life goes on (and hopefully for a while yet…)

So I plan to spend easter largely at home, gardening, walking, reading – doing a whole lot of things that I want to do. Hang out with Carl, see the kidlets if they are around and spend a day with m&d.

Also – thanks. All of you. I continue to be blown away by all of the love and support from you all.

(my dad calls me “rattle kate” when I go on and on…I guess you could call me that now) x

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