Thursday, October 25, 2012

Home, there's no place like it

On Monday this week Mum went into hospital for some symptom management, and as she is going to be there for over a week, I thought I'd take the opportunity to head home to Myrtleford and Beechworth for a flying visit (and an overnighter to Melbourne to catch up with my favourite kidlet, Miss Sophia... oh,  and her parents ;-)

Today has been a lovely day. Pottering around the house, and doing three loads of washing (towels, sheets and clothes that have been languishing about the place since I went to Sydney in July). I was also rather pleased and impressed that the house hasn't been overtaken by arachnids, cockroaches and other pesties, and apart from a slight musty smell from being locked up for so long, the house is pretty much as I left it.

This morning whilst pottering about the house, I had a visit from a couple of Myrtleford parishioners, and it was lovely to catch up with them and hear some of the news of what's been happening in my absence. Then I had lunch at Cafe Fez (including a pot of their legendary Moroccan Mint Tea).

In the afternoon, I met up with a group of folks from the Myrtleford church for afternoon tea at the Alpine Gate Cafe. It was good to chat and talk about what's been happening for them, as well as bringing them up to date on the latest news about Mum.

After this, I went out to visit a lady whose husband passed away recently, and we spent a precious time together remembering, laughing, crying, praying, and talking about all manner of things.

When I got home, I had a bit of a frolic in the manse garden. In my absence the lovely man who mows my lawns and keeps the garden under control has been doing his thing (and it looks as though his last visit was not very long ago). I noticed that the rose bush in the back yard was starting to bloom, so I got out my secateurs and cut some of the buds, so that I can enjoy them inside whilst I'm here. When I was doing this, I noticed that the rose bushes were being strangled by sticky weed, so I got my gloves on and enjoyed a very therapeutic 15 minutes or so of ripping the sticky weed out by the roots. Very satisfying it was, too.

The day concluded with some yummy takeaway noodles from the local Chinese, and a phone call to Mum, who has had a full day, with a number of visitors dropping in, and some of them even bringing flowers, which we both had a giggle about.

(There's a story here: When Mum was first admitted to the hospital on Monday, she was placed in a lovely single room, with huge windows that give a lovely view, lots of light - and they even open to let in fresh air. There is a broad window ledge, which visitors can sit on if required. Mum's first comment was, "I'd better get lots of flowers while I'm in here". When I asked her why, she replied, "well, look at that ledge, lots of space for flowers to brighten up the room."

So the next morning, I took in a lovely arrangement of green-toned orchids, and since then, have been dropping lots of very unsubtle hints to various friends and neighbours about taking some flowers in to Mum when they visit.)

Tomorrow, I drive to Melbourne, where I will stay in my favourite hotel, the Grand. I intend to set out early enough to check in at the earliest possible opportunity, and make use of the pool and spa at the hotel, and maybe even have a luxurious soak in the bath before heading out to dinner (and being sure to arrive early enough to have some quality reading and cuddle time with Miss Sophia before dinner).

I am so grateful for the opportunity to have this little break: the knowledge that Mum is being well cared for in my absence so I really can relax; the chance to reacquaint myself with 'home' (and pick up some more summery clothes and other bits and pieces to take back to Sydney with me).

Sunday, October 21, 2012

Cancer is (still) a bastard

And now my attention turns to colleagues' wives and cancer.

Today I learned that the wife of a UCA ministry colleague in my home presbytery passed away yesterday. Loloma had been ill with leukaemia for some time, and finally succumbed. 

In addition to this, just before I left home to come to Sydney, I heard that Kate, the wife of my Anglican colleague, had discovered she had cancer, although at that stage it was uncertain how serious the prognosis was. Having heard this week from some folks back home, it seems that her prognosis is not good, and palliative care is likely to feature in her not too distant future. This woman is younger than I, and has three young children, the youngest of which would be about 12 months old now.

Since Mum got sick, after getting over the initial shock of her prognosis, she's been quite philosophical about the prospect of dying. She says that she has had a good and full life, and so for her to die a little earlier than expected is not such a tragedy, and there's no point sitting in a corner and crying. 

However, what made Mum really sad was when she was having chemotherapy, and would see others coming in for their treatment, many of whom were quite young: teenagers, young mums, and others who Mum thought should have their whole lives ahead of them, so it was unfair for them to be struck down by this bastard disease.

Whilst Loloma was an older woman (although not quite as old as Mum), with a grown up family, I think this is very true for Kate, who is still young, and has three little girls who will miss their mum.

Sometimes, in such circumstances, words fail. However, I think a friend was spot on when he sent me the following words about this kind of situation:

I remember when I was a chaplain in the Inter-Church Trade and Industry Mission (ITIM), my friend’s mother was dying and I asked Fr George Mainprize, of the Anglican Diocese of Newcastle, what appropriate words could I offer.
George said, “It’s a bastard of a thing.”

I said, “Yes it is a bastard not knowing what words are appropriate.“

He looked at me and said “They are the words.”

Saturday, October 20, 2012

Playing guard dog

Mum has been pretty low lately. Because of her fatigue and breathlessness, she can't walk or get around the house independently, and even getting out of her chair and onto the seat of the wheelie walker is such an effort. We're currently waiting for a bed to become available at Greenwich Hospital for a brief period of symptom management and respite. This will hopefully happen early next week.

In the meantime, Mum is not feeling at all sociable, and when people have asked to come and visit in the past week (or even turned up at the door on the off chance), I have had to tell them that Mum isn't up to visitors, and put them off.

Whilst I don't at all mind having the role of guarding Mum's space, sometimes I feel a bit torn about always saying no to people. 

I understand that Mum is tired and feeling totally 'blah', and as such just doesn't want to be bothered dealing with visitors. But, without wanting to trivialise what Mum's going through, it strikes me as one of those kinds of situations like going to the gym on a cold and miserable morning. You so don't want to leave the warmth and comfort of bed to get out and go, knowing that it will be hard work and maybe even painful; but once you've done it, you feel good and invigorated for the rest of the day.

Whilst I understand that for Mum, the effort of facing people coming to visit is hard, but at the same time, as she isn't really able to get out any more, it can't be a good thing for mine to be the only face that she sees day in and day out. Surely brief visits from people who care, and who understand how tired and sick Mum is would have to be beneficial?

As I see it, there are two sides to this issue. One is that people want to visit Mum to let her (and me) know that they care, and want to be supportive, for Mum's sake. But there's also the other aspect- that we all know Mum is going to die sometime soon, and friends and relatives want to see her, as part of the ongoing farewell, for their own sakes.

I think it's important for us to allow our friends and family to participate in this journey with us, as we draw closer to the pointy end. It will be good for them, and good for us... so now my challenge is to convince Mum to say yes to visits. There will obviously be some days when she's not having a good day at all, and so it will be appropriate for me to be the guard dog, and send people away from the door, or when they phone, tell them not to come; but on days like today, which has not been a particularly bad day, it would be nice to say yes to a visit, for all of our sakes.

Wednesday, October 17, 2012

Rocky road

Today was the 5th anniversary of Dad's death. As this day was approaching, I'd been wondering what (if anything) I should suggest to Mum that we do to observe the anniversary. In past years I know Mum has watched the DVD of Dad's funeral, but we didn't do that today. In fact, we didn't do anything special to mark the anniversary. At about 10pm, I mentioned to her that it was the day, and she said she knew, but didn't want to make a big deal of it. Dealing with her own situation is enough for her for now.

Since her fall a week and a half ago, Mum's general state has been up and down. Although she now has a wheelie walker, she can't use it to walk, as even the slightest exertion causes her to become quite breathless. So now, we use the wheelie walker as a wheelchair; Mum sits on the walker's seat, and I wheel her around on it.

Yesterday, Mum had a bad day. In the morning she was breathless and distressed. We both thought she might have ended up in hospital, but it didn't happen. After ringing the Greenwich hospital palliative care team, I gave her another Endone tablet, and that settled her breathing down, and calmed her down generally. She spent most of the day sleeping; but trying to do anything, even the least strenuous movement was excruciating for her. 

When she went to bed last night, her sleep sounded troubled, and her breathing laboured. When she snored, it sounded like she was moaning in her sleep, and it was hard to listen to as I lay awake in the next room. I prayed for God to take her in her sleep, as it pains me to see her suffering and so miserable.

Today was a slightly better day, without the distress, but still hard work for Mum to do anything other than sitting in her chair. She said again that she thinks she should be in hospital, mainly because she thinks that her dependence on me to help her with everything is too much for me to have to bear. I don't mind having to do all the things I do to support her, but it is hard to see my mother, who has always been so strong, active and capable, so helpless and scrawny.

Who knows what tomorrow will bring? We're trying to just take one day at a time.

Saturday, October 13, 2012

Simple things, small things, things to be grateful for

As Mum's strength and energy continue to wane, I have so much to be grateful for.

I am grateful for the team from Greenwich; for Robyn the RN, for Alyssia the OT, for Hanna and Cam the physios, for Geoff the psychologist, for Ruth and Kat the doctors and everyone else on the team. I am grateful for the efficiency, patience and compassion with which they have cared for Mum and for me so far.

I am grateful for the shiny green wheelie-walker that has enabled Mum to be more confident to move around the house since her fall last week, and, the shower chair that will also help her to maintain her independence for a little longer.

I am grateful for the Shanghai Rolex Masters tennis comp, and the golf tournaments in exotic places like Turkey and Portugal that no-one has ever heard of, that have been keeping Mum amused since we got Foxtel on our TV earlier this week.

I am grateful for the box of fruit and veges that I found on the front porch this morning, and other gifts of food from loving neighbours and friends. Even though the main purpose of these fresh yummies is to try to tempt Mum to eat, the givers are well aware of the fact that I am most likely to be the one who benefits most from them, so it's a gift of love for me too.

I am grateful for the love of friends and family who come to visit (often travelling significant distances to get here), or call to see how we're going; and that I had a long phone conversation this afternoon with a cousin whom I haven't seen or spoken to for longer than I can remember.

I'm grateful for the colourful and cheeky lorikeets that squawk and squeal to be fed, and for the especially tame pair that come right up the steps to the back deck and warble gently at me for food; and for all the different birds (and the water dragons) in our backyard, all of whom remind me that there is a strong and vibrant life going on in the world around us, in contrast to the journey towards death that I am taking with Mum.

I'm grateful for the support of my church congregations back home, who regularly send me emails, letters and call me to assure me of their care and prayers; and also for the church family at North Ryde Community Church, who have welcomed me among them, and offered care and support.

I'm grateful for the 'Princess of Pain' (aka Linda, the gym trainer) who has helped me to work out an exercise program at the local gym, and the opportunity to get out and use my body in ways that it hasn't experienced in a long time.

So, when I think about it, there is an awful lot to be thankful for (and I have really only scratched the surface here- many things and people I haven't mentioned). 

Tuesday, October 09, 2012

A little bit shaky

'Up and down' is the order of the day right now. 

Since her last radiotherapy treatment, Mum hasn't been quite right. Although the radiotherapy seems to have been successful in alleviating the pain in her back and hip (which is why she had the treatment), there are a couple of new things that have emerged since the treatment. I'm not sure if these new symptoms (light-headedness and a colicky pain in her gut) are the after effects of the radiation therapy, which will eventually resolve, or if they are part of the next stage of the overall disease progression.

On Friday morning, Mum had a fall. After feeling light-headed, she lost control and ended up hitting the floor hard. She wasn't injured, but was shaken up pretty severely, and has lost a lot of confidence since then, often needing me to support her ('just in case') when she walks around the house. She's also been feeling miserable, wishing to die now, rather than going through all this pain and misery.

It's been as if Mum is crumpling in on herself, both physically and emotionally, and that's been so hard to watch. I've cried a lot in the past few days, whilst all the time trying to remain strong in front of Mum. I'm grateful for the incredible support of the Greenwich Hospital Community Palliative Care Team, who have responded to my latest cry for help more promptly and thoroughly than I expected, or could have hoped for. 

Some of the allied health professionals from the team will be visiting us at home during the week and given how shaky Mum's been feeling since her fall on Friday, it's good that they can come to us this time, rather than having to take Mum out to Greenwich.

Meanwhile, I still try to tempt Mum to eat, as her appetite continues to decrease, and at the moment she derives no joy at all from food or eating. We have started trialling some different nutritional supplements in addition to the vanilla Sustagen Mum's been having, and some of these have been quite well received, so that's good (especially since the Resource Plus and Fortisip varieties are even more nutritionally dense than the Sustagen).

In addition to the medical appointments that have now popped into our calendar for this week, tomorrow (or today, technically) is a day of excitement, as we are having Foxtel installed, so Mum can watch her favourite sports (ie ALL the cricket), which are ignored by free to air TV. I'm hoping that Mum will be able to get excited about this 'new toy' and that that might lift her mood a bit. 

Through everything I remain hopeful that Mum will be able to latch onto the good things to celebrate amidst the pain and difficulty that she finds so exhausting.