Monday, July 30, 2012

Superwoman, or what?

This morning Mum had an appointment with her medical oncologist. The look of sheer surprise on his face as we walked into his office was priceless. 

"You're looking so well... so different to last time I saw you!"

(because last time he saw Mum, she was in a lot of pain, and feeling generally miserable and unwell; very different to how she is now).

We talked about the success of the radiotherapy in arresting the spinal tumour, and relieving the excruciating pain Mum had been in. We agreed that there is no point in putting Mum on any more chemotherapy (even though there is apparently a chemo drug that might be a possibility- but he said that in the overall scheme of things it might not do any good, and would probably only make her feel sick, which none of us wants), so we'll just go back for more radiotherapy if necessary, for relief of specific symptoms (ie if the other tumour in her spine starts to give her pain), but apart from that, we'll just go down the palliative care path. We don't have to see him again until the end of September.

After the appointment we were feeling pretty happy and Mum decided we should go out for lunch to the RSL club. So we did. When we arrived there, it was too early for lunch, so we had a bit of a flutter on the pokies (the only time I ever play the pokies is with Mum, as it's something she enjoys, and we have fun doing it together), and then had a pleasant lunch in the coffeeshop bistro. 
Mum had a lamb hamburger with salad and chips, and I had a gourmet pizza with garlic prawns, bacon and brie. We worked out that this was the first time Mum had been out for a meal since her birthday dinner back in May. We got a bit excited, and started thinking about other outings we might be able to make... and it seems that a performance of South Pacific at the Opera House could be on the list.

Mum loved that lamb hamburger!
After lunch, we had another flutter on the pokies, and then went home. Overall, it was a great morning.

This evening, Mother decided that after her mighty effort of consumption at lunchtime, she wasn't really hungry, and didn't want any dinner. I therefore took the opportunity to get some Thai takeaway for myself, as Mum isn't into spicy food (and her gut can't really tolerate it these days even if she wanted to eat it).  

I came home with some Pad Thai, and proceeded to eat. A little voice piped up, "can I have a taste?" so I gave her a bit of chicken and noodle. A few minutes later, "that was nice, can I have another taste?" at which point I offered to put some into a bowl for her, but she declined, saying that the little tastes would be enough.

It occurred to me after giving her those tastes, that it probably wasn't very smart feeding her from the same fork that I'd been eating from, given the lurgi that I've had for over two weeks, but we figured that if she was going to get it, she would have got it by now, and hopefully I'm not overly contagious any more. 

But the way things are at the moment, it's starting to feel like Mum's a bit of a superwoman, so I'm sure she will be fine.

Sunday, July 29, 2012

And now for something completely different

Amidst the deep and meaningful meanderings of my mind and emotions, I thought I would share some pictures of something totally unrelated.

For quite some time now, plans have been afoot at Beechworth church to do some renovations to the church building. There have been problems with the floor; some of the floor boards have rotted, and become loose, and the floor is generally uneven, with a bizarre little step up to the sanctuary space, which is a real OH & S risk for tripping (and I have almost come a cropper on it numerous times).

After a lot of to-ing and fro-ing to get the relevant approvals from Heritage Victoria, local council and the Synod, quotes from various contractors were obtained, and a contract was signed. The work began just over a week ago. The plan is to replace the floor in the entire worship space, build a ramp from the church into the vestry (thus giving disabled access to the hall through the vestry, without the need to go outside), remove the large panel at the back of the church that meant that upon coming into the church via the central door, one had to veer to the left or right to enter the worship space (and which caused all manner of issues for funeral directors in getting caskets into the church around that tight chicane). When the contractor was exploring the building to prepare his quote, he also identified some internal walls in the back rooms that needed to be rebuilt, so that will be done too.

During the week I received an email from some of my parishioners in Beechworth, the lovely Glen and John Purkis, with some photos John had taken of the progress of the work to date. All I can say is, "WOW." They have certainly gutted the building very quickly. I am hoping that John will continue to document the renovation work, and send me pictorial updates.

Looking towards the front of the church and the door into the kitchen

Looking to the back of the church. The main entrance door is in the centre,
and on the right we can peer into the storage room

Looks like some rebuilding of the floor has commenced.

The doors and panelling that have been removed to do the work

Friday, July 27, 2012

Thankful for the simple things...

This morning as I staggered out to the kitchen to make my breakfast (after a bit of a sleep-in), Mum received a phone call. It was from one of my cousins, who had recently been on a cruise with her husband, and she was telling Mum about her holiday. As I sat in the kitchen, I heard Mum giggling like a school girl, and engaging in some light-hearted banter on the phone. It was great to hear her so cheerful.

After lunch (or breakfast, for me) we went shopping, as Mum had an optometrist appointment in the shopping centre. Mum chose some new glasses with rather flash frames, which I think will give her a lift. We also bought two pairs of tracksuit pants for Mum to wear around the house, as all of her current pants are far too big. We got a bit of a bargain, as they were significantly reduced in price, and tonight, after we got them home, and Mum put them through the wash, she kept asking me, "how much were they again?" and enjoyed talking about what a bargain they were, especially as she keeps pointing out how great the pockets are in them. There's a sense that small things are captivating her, with the wonder of a little girl. Quite delightful, really.

Later this afternoon, as we were watching the mandatory cooking shows on TV, Mum commented that she wouldn't mind some steak for dinner, so I went up to the local butcher to get some. It was quite delicious, but the significant thing was that Mum actually fancied something specific, had an appetite and was interested in eating. Again, small and simple things, but given how hard it's been to tempt her to eat anything recently, it's great when she actually wants to eat, and expresses a preference for something in particular. (and as we were eating dinner tonight, she commented that it might be time for another pasta meal; so tomorrow night's dinner will be chicken and mushroom pasta).

Mum has also decreed that I need a dressing gown ("But Mum, I have a dressing gown, at home," "Yes, but it's not here, is it? And you could do with one here, so you can change out of your clothes and relax in front of TV at night before going to bed.") So, it seems that tomorrow we will go shopping for a dressing gown for me. 

It's great that Mum is very much more interested in the things around her, and seeking to do things and be a little active, so that life isn't revolving around her cancer and illness so much now as it was a few weeks ago. On Tuesday we are putting the car in for a service, and need to find something to do at Macquarie Centre for around three hours. So, we're looking at going to a movie (if I can find something that's screening that might interest Mum).

I know this is all boring, mundane everyday stuff, but given how difficult things have been, and how all-consuming Mum's illness has been in recent months, I'm so thankful that a little bit of 'normal' is creeping back into her life, at least for a while.

Thursday, July 26, 2012

It's not all doom and gloom

I am currently in a very odd space. 

Three weeks ago I packed up my life (or at least part of it) and flew to Sydney to be with Mum to walk the journey of the final months of her life with her. I have been granted 'up to six months' of leave without pay from my ministry placement to allow me the freedom to be here at this time.

Because cancer is a sneaky bastard (as a friend pointed out to me), we really only have the vaguest of ideas of how long Mum has left to live. I pushed her oncologist to give me a ball park estimation, and he said that the way the disease is progressing, it's likely that she may have only a few months to live; and possibly as little as 'weeks'. And when I asked him if she would live beyond 6 months, he said it would be highly unlikely. That was a month ago.

Since then, Mum has had a fortnight of radiotherapy, simultaneously targetting a spinal tumour and the large tumour in her pancreas. This has resulted in the arrest of the spinal tumour, and the relief of the excruciating back pain she had been experiencing. There's also a possibility that it may have slowed down the progress of the pancreatic tumour too. During the past week, it seems Mum has turned a corner, and has been feeling a lot better than she was when I arrived three weeks ago, and is now relatively pain free.

So the odd space in which I currently find myself is one where it feels like I have a foot on either side of a huge divide. On the one side, I'm very conscious that my purpose in being here is to support Mum as she prepares to die; to see her to the end of life, praying that it will be quick, and that she won't suffer too much in the process. But on the other side is the hope that this recent treatment may actually give her longer to live; that the oncologist's estimate may be wrong, and Mum may live much longer than six months. 

I'm also wrestling with the conflicting emotions that whilst it would of course, be great if Mum did surprise us all and live much longer than anticipated, if she does live more than six months, some logistical problems may emerge if I need to take leave for more than six months. (And I feel really petty to be even thinking of the logistics, rather than just celebrating the possibility of having Mum with me for as long as possible.)

But, as I said in the heading of this post, it's not all doom and gloom. We have been incredibly blessed by the people whom we have encountered along the path of Mum's health care. All of Mum's doctors have been great, and the lovely Sybill from the Northern Sydney Home Nursing Service has been great, and a breath of fresh air coming into the house over the past month or so. The Community Palliative Care team at Greenwich Hospital have also been amazing. The doctor Mum's been seeing has been amazing, and is really lovely. The nurses and allied health members of the team have also been lovely.

In the palliative care day hospital, there is a beautiful waiting room; light and airy, with lovely white couches, a kitchenette to make tea and coffee, and a generous supply of biscuits, and soup and sandwiches brought in at lunchtime for anyone who's around and feeling a bit peckish. On Tuesday, as we were waiting for Mum's appointment with the doctor, we were rather taken aback to be greeted by the drinks trolley trundling into the room. We were tempted with a range of drinks, from wine, champagne, to various spirits, soft drinks, juice... all accompanied by snacks- chips, crackers and  cheese, chocolate... it was a veritable Aladdin's Cave of alcoholic treats. I indulged in a gin and tonic (which went really well with the Rikodeine cough medicine I'd taken before leaving home) and a packet of chippies. Mum didn't feel like a drink, but enjoyed some cheese and crackers. It was all terribly civilised.

It's little things like this- the kindness of the people, and the unexpected treats reinforcing the  humanity of  the whole situation, that have been great gifts to us, and have reinforced that my 'death watch' doesn't have to be all doom and gloom.

Sunday, July 22, 2012

There's something about a roast...

A roast dinner would have to be one of the best of all comfort foods, especially in winter. It's also one of those great things that can look and taste really impressive, but only require minimal work for the cook. All it takes is a little seasoning/prep time, then chuck it all in the oven, and let it do its thing.

A roast is also a wonderfully hospitable meal. When dinner guests walk in the door, they are greeted with he delicious scent of the roasting meat and vegetables, which fills the whole house, and lingers for days afterwards.

I love cooking roasts for guests, and as a rule, I tend to overdo the vegetables just a little, both in quantity and variety. But this usually means there are plenty of leftovers to make bubble and squeak the next day.

Tonight I cooked a lamb roast for Mum and me, using a boneless mini-leg roast from the supermarket. We didn't have a huge variety of vegetables in the house, so potatoes, pumpkin, carrots and green beans would have to suffice.

The majority of roasts I've cooked at Mum's place in the past year or so have been for three people, and out of habit, I got out a huge pile of potatoes (as our usual third party liked lots and LOTS of potatoes with his roast). It was only after I'd started peeling, that it dawned on me that I didn't need that many spuds, and put the excess ones away. 

It was a stark reminder that from now on there would be no more roasts for three like the ones we had enjoyed in the past. As I thought about how much I will miss those times, it reinforced for me that sometimes making hard decisions (no matter how necessary or right they might be) can have unanticipated side-effects that can sneak up on us when we're least expecting it.

Tonight we started a new tradition- the roast for two. It was delicious, and Mum managed to eat a reasonable serve, and enjoyed it.

Small mercies, for which I'm thankful.

Saturday, July 21, 2012

I think we've turned a corner...

When Mum started radiotherapy we were told that the negative effects of the radiation would stay in her system for a couple of weeks after the treatment ceased, and that she would probably feel worse before she started to feel better.

She finished her course of treatment two weeks ago today. Last Friday was probably the worst day we've had, as Mum was extremely nauseous, dry-retched, was in a lot of pain that nothing seemed to ease, and was generally miserable and sick.

Yesterday seemed to be a turning point, as she had no pain all day, and even managed to go out and run some errands around the local shops (as I documented in yesterday's post). Today she seemed to go from strength to strength. This morning started with her having the most substantial breakfast she's had in a long time (including half a cup of tea, something she hasn't been able to stomach for a while). Then the community nurse came, and was delighted to see how well Mum was feeling, and that the balance of pain, bowel and nausea meds seems to be working well.

Later in the morning we had an appointment with the radiation oncologist, as a post-treatment followup. She was also delighted to see Mum looking so well, walking much more easily, and obviously not in pain. She has now happily bowed out of Mum's treatment, unless anything else comes up for which we might need her. So Mum's care is now primarily in the hands of the palliative care specialist (who we see on Tuesday), and her original medical oncologist (who we will see the following Monday).

I have not been quite so fortunate as Mum. My cold is breaking up, which is a good thing, but it means I've been coughing my lungs up all day, starting around 4am this morning. I was feeling a bit nervous about sitting in a waiting room full of cancer patients with compromised immune systems, and sharing my germs by coughing all over them. So I wore a surgical mask to contain the germs (in between running outside from the waiting room every time I had a coughing fit). Not a great look, but seemed effective (and Mum said that when I was outside, one of the other people in the waiting room commented to her how considerate she thought it was for me to wear the mask and try to minimise the spread of my germs).

After we left the doctor's rooms, Mum wanted to go and get a pie for lunch (again) today, which we did, along with a nice little chocolate tart for dessert. At lunchtime, Mum wolfed these down, along with a mandarin for afternoon tea, and then this evening, she asked for a glass of wine and some chippies. This has been our usual pre-dinner aperitif, but since I've been here Mum hasn't felt well enough to want this. So when she asked for it today, it came as a delightful surprise.

So, we enjoyed our wine and chippies, and then had the dinner that our lovely next door neighbour made and brought over for us. Mum ate and enjoyed it all.

Tonight she kept saying that she couldn't believe how good she's been feeling; that she's been pretty much pain free all day, and has been able to enjoy her food for the first time in ages.

It feels like I have my mum back, after weeks of watching a pale imitation, who was too frail and sick to laugh or joke or want to do anything but sleep. It's warmed my heart to see her smile, and to talk with her about what she might want to do tomorrow (and even the fact that she's starting to nag me about tidying up my mess- she's obviously feeling much better!)

I don't know how long this new lease of life will last, but I am grateful to God for every minute of it, and hope that we'll be able to make the most of it whilst it lasts.

Thursday, July 19, 2012

A good day...

I woke up this morning feeling decidedly better than I did yesterday. Whilst I'm still coughing, and snuffling a lot (and even sneezing a bit), it seems that the cold has broken, and is starting to clear up, which is great (and even greater, that Mum still seems not to have succumbed).

Mum was also feeling pretty sprightly this morning; having polished off a reasonable amount of breakfast, not needing any extra pain relief, and putting on two loads of washing, all before I even got out of bed. We decided that we would make a trip out today- to run some errands at the local shops, which is the first time in I can't remember how long, that Mum has gone out for a reason other than a medical appointment. So that alone made me smile all the way to the shops.

We ran the errands; I had business at the post office, then some banking that Mum had to do (which included closing an account at one bank, and activating my power of attorney at another), then we wandered into the Mall, because Mum wanted to get some mini tarts from the cake shop. A friend had brought some when she dropped in the other day, and we really enjoyed them (and for Mum to be so enthusiastic about food was a novelty), so Mum wanted to get some more. As we wandered up to the cake shop, Mum said, "Gee, I wouldn't mind a pie for lunch.. maybe we could have that left over chicken pasta for dinner". 

So, for lunch today, Mum put away a meat pie, a glass of vege juice, one of those mini tarts with cream, and made an attempt at a cup of tea. She ate it all, didn't leave a thing, and enjoyed it. I was almost beside myself with excitement.

Today was a day of achievements all round. I finally managed to complete and send off all the Centrelink forms for my application for Carers' Allowance and Carer Payment (as I'm now officially on 'leave without pay' from my ministry work). My post office errand was to post some books which I needed to return to a friend with whom I have decided to cut ties. Now that's done, I can rule a line under that whole painful and messy situation, and move forward, free to focus on what's important right now.

Additionally, Mum had two visitors, a couple of phone calls and has been quite bright and pain free all day (needing only one preemptive Endone before we went out.). And she even had a mandarin for afternoon tea.

Tomorrow we have the lovely Sybil (our community nurse) coming in the morning, and then a follow up visit to the radiation oncologist at the San. I'm quietly hopeful that as we reach the 2-week mark post-treatement, we might be turning the corner as the harsh effects of the radiotherapy ease off, and Mum starts to have less pain and a bit more energy.

Next week we have appointments with the palliative care physio and OT, who will hopefully be able to advise us on strategies to help Mum maintain her energy and keep active.

Today has indeed been a GOOD day. Thanks be to God!

Tuesday, July 17, 2012

Sayin it with lerrv...

As Christians, we are called to 'speak the truth in love' (Eph. 4:16). So why are we so crap at it?

Over the years, in various forums, and especially on Facebook pages devoted to discussions among fellow Christians, I have seen many instances of full-on shellackings that are given out under the guise of 'speaking the truth in love' ("because I wouldn't be really loving you if I didn't correct your wrong doctrine, and show you the error of your ways, would I?"... you get the idea).

A friend and I used to joke about such things, when we saw these rabid interactions where brothers and sisters were ripping into each other quite energetically... "But at least, they're doing it with LOVE," we would say, "and that's what counts!"  It's really handy, because if you preface what you're going to say with some platitude about speaking the truth in love, like: "it pains me to say this, and it's not my intention to hurt you, but ..." you can effectively say just about anything, and the vitriol and venom doesn't count. How cool is that?! (and yes, I am being sarcastic here, in case you were wondering).

From the outset I have to say that I am just as guilty of doing this as anyone else (sorry to those of you who thought I was perfect ;-). And indeed, quite recently I unloaded both barrels at someone; entirely to meet my own needs for self protection and to vent my hurt and frustrations, without really focussing on what was best for the other person (but at least I was honest enough not to pretend I was 'saying it with love').

If you're expecting me to now come out with some great words of wisdom about what should happen, or how I intend to do better in the future, I'm sorry, but I will need to disappoint you. I don't pretend to have all the answers. Regular readers of this blog will hopefully have noticed that my writing here is one way I process things, so it's all a work in progress, rather than a fait accompli.

Maybe sometime later I'll be able to come back with some further ruminations... you'll have to wait and see.


Saturday, July 14, 2012

What a difference a day makes

It's so hard to believe that today followed yesterday, as the two days were so different.

After the horrible nausea, pain and anguish Mum was experiencing yesterday, it's like she was a different person today.

She wasn't feeling so great when she got up, which is pretty normal. Mornings are not her best times; but she managed to force down some breakfast (and all the associated pills, before and after the food). She asked for an Endone around 8:30am, and didn't have another all day, until about 7:30pm, which was great! I kept checking with her through the day, asking her about pain, but she said she felt good... and no icky nausea either :-)

I went out to do some shopping, pick up some tablets from the chemist, and have a little quiet time in a coffee shop, and as I was leaving, Mum said, "I'll just walk up to the letterbox while you get the car out."
"Mum, you do realise it's Saturday, so there won't be any mail?"
"Yes, I just want to have the exercise."

As I backed the car out of the driveway, I saw her with hose in hand, watering the plants down the  side of the house, so I think she was feeling ok. The fact that it was a bright, sunshiny day was also a good thing, and I suspect that Mum reaped the benefits of being outside in the sunshine (albeit briefly).

 After yesterday's misery, today was such a huge contrast that it gave me hope that things may well get better for Mum once the effects of the radiotherapy wear off.

Friday, July 13, 2012

Too many tears...

Today hasn't been a good day (and it's still only 2pm).

Mum's been feeling pretty queasy for the past two days, and last night and this morning had vomiting attacks (which for her is pretty serious, as she never vomits).

And I think I must be really tired, as I've been tearing up at the drop of a hat: when Mum vomited after breakfast, when the nurse was here this morning, when we were waiting in the doctor's surgery, when my cousin rang at lunchtime to see how Mum was, when the nextdoor neighbour popped in for a visit... it seems that today there is just no stopping my waterworks.

Been trying to contact the Palliative Care team to get some advice on stronger anti nausea measures that the GP wasn't able to access for us, but they still haven't gotten back to me. Hopefully we'll be able to sort this out soon, as I really hate seeing Mum so miserable.

Thursday, July 12, 2012

Still tired...

I've now been here in Sydney for just over a week... in some ways it feels like I only arrived yesterday, but in other ways it seems like an eternity: three radiotherapy treatments, consultations with three different doctors (including a palliative care specialist), three visits from the nurse, and three (or is it four?) changes to Mum's pain medication regimen.

There have also been numerous phone calls (which Mum usually lets me field for her), lots of visitors, including some who have travelled significant distances- from Jindabyne, Dubbo, Melbourne and Myrtleford (and the couple from Myrtleford brought up a box of my gear with them that I couldn't bring on the plane, so now I can sleep with my own pillows and doona... bliss :-). And next week one of my former theological college professors is flying up from Melbourne for the day to visit Mum and me.

At the moment it seems that most of my Facebook updates revolve around Mum's pain, how many Endone tablets she's had today, and what I've managed to tempt her to eat (as her appetite is pretty poor). I continue to be amazed that my many Facebook friends remain so enthusiastically supportive, and haven't filtered me out of their feed, as I'm sure my current prattle about pain, medications and food must be dreadfully tedious.

I go to bed at night, and even though I am usually so bone weary, it takes me hours to finally get to sleep, as my mind just keeps buzzing and spinning and I find it hard to settle. Tonight I think I will turn to the Jesuits for help- by using my Sacred Space prayer book as a meditative prayer time as I go to bed, which hopefully will clear my mind of unhelpful busyness.

Friday, July 06, 2012

So.... tired.....

I arrived in Sydney on Tuesday night, being granted an initial 2 weeks' paid annual leave, followed by up to 6 months of unpaid leave. So I'm here now for as long as it takes.

The change in Mum's demeanour since the last time I saw her is quite striking. The decent pain medications are obviously having a good effect, and she is relatively pain free now (or at least the pain she has is manageable and bearable), and it's a great relief to me that she's not suffering as much as she was. Today (Friday) she completed a two week program of radiotherapy treatment, targetting the larger of the two spinal tumours, and the pancreatic tumour. 

It appears that, at least so far, Mum has escaped any significant side effects of the radiation treatment. She is very weary, and rather lethargic; wanting to sit and vegetate in her comfy lounge chair all day, regarding the world through closed eyelids. We've been told that she may have some adverse reactions in the coming week or two, as the tumours that have been zapped grumble and complain, and as her immune system cleans up the dead tumour cells in the wake of the treatment. The radiation oncologist who has been in charge of Mum's treatment, and reviewed her case today, said that the tiredness she has been feeling is something akin to the kind of fatigue that one experiences with a big infection like the flu, where the immune system is working hard to fight the infection. She also said that Mum will probably feel worse before she starts to feel better, over the coming weeks.

But the good news is that the treatment is finished, and we don't have to make daily visits to the hospital any more (and Mum can do what she really wants to do- spend all day vegetating in her chair, without interruption).

I'm also feeling very tired. I haven't been sleeping well since my arrival here. I suspect this is partly because the bed here is not MY bed, and so is not as comfortable, but also the general anxiety I'm feeling for Mum is taking its toll.

But all in all, I can't complain. Mum is bright and reasonably cheerful, and I've had some success in tempting her to eat (she had a lovely big bowl of soup tonight). I can't find words to describe how good it is to be here, and to know that I am surrounded by the love and concern and prayers of so many friends.

But now, I think I need to go and turn on the electric blanket to warm my bed up ready for my tired body's repose.