a change in time

the small changes we make everyday will all add up to create a more sustainable way of living


26 Comments

Sustaining one’s spirit in tough times

Things haven’t gone so well for us lately. We have had to muster reserves from our somewhat depleted resources to tackle what we are currently facing. And it’s all because of that darn cat. Well not really, but we have to blame someone and lhasa is fair game.

img_3177

How can you hold anything against me? I am adorable! I am even lying here between two delicate yellow flowers. Purrrrr. 

Our lives have changed again. We try to track back to the beginning of this new stage. The first fall happened on the 21st of January, just one week after we had been at home, following a not very successful chemotherapy treatment that was meant to halt the continuing colonisation of Peter’s bone marrow by the myeloma cells. (Damn!)

Peter was being an absolute darling, albeit somewhat naughty, checking the drip irrigation system, tending to a leak near the tap. He crouched down to fix it, and then tumbled backwards, hitting the bamboo screen behind and hurting himself more than he should.

img_3071

Here is my evidence that Peter can’t help himself. On the same day, after that nasty fall, he was helping Tam set up the bed for their imminent arrival. 

The next fall was on the 24th, as Peter tried to stop Suki from running to the door as I returned home. The next morning Peter was feeling stabbing pains in his legs. Fall #3 occurred on Saturday the 6th, that fateful day when Peter didn’t see Lhasa, with no time to stop himself from falling forwards onto his hands, tearing a tendon in his rotator cuff.

Fall #4 occurred while Peter was reaching out to place a glass on the table in the lounge room. Fall #5 happened before bed when Peter lost his balance in the bathroom. You’d think we would have started to suspect that something was wrong, but that thought must be relegated to hindsight.

On Monday the 6th, Peter was due at the Epworth for an MRI to assess the extent of the disease. He was surprised to discover that lying on the bench in preparation for the scan was so painful that they had to stop the proceedings and inject pain medication into his lower back. The next day he had a CT scan in the planning session for the radiotherapy treatment. Once again he felt excruciating pain whilst lying on the bench. More pain medication!

fullsizerender

Our first day back in hospital, on the 6th of Feb. Peter caught me pondering the thought of eating hospital food again. Peter’s oncologist had wanted Peter to stay in, but he felt fine and, who wouldn’t want to go home if they had a chance? 

Fall #6 was the final straw. The 9th of February. We had been at the Epworth for Peter’s first radio therapy session, on returning home, and on our way into our bedroom to meditate, his left leg gave way, with his shoulder hitting a nearby chair and his back hitting the ground with a thump.

That’s how we ended up in hospital for two weeks. That’s where the need to sustain our spirits in tough times really kicked in. Peter was taken in by ambulance and admitted that night, I joined him the next morning. He had four more sessions of radiotherapy – Friday, the 10th, and then the following Monday, Tuesday and Thursday, with an operation on his right shoulder on Tuesday afternoon. Valentine’s Day. After that final session of radiotherapy, Peter was no longer a ‘usual patient’. This status lasted for another week. Probably the longest week of our lives, or at least it seemed that way. But we have our coping strategies and, mostly, people were kind.

img_3255

It was Melissa’s birthday on the 12th of February. Mel and Phil kindly brought in some birthday breakfast fare for us so we could join in the celebrations.  

The hospital environment was no longer suitable for Peter’s situation. The staff are accustomed to looking after people with acute care needs. We couldn’t go home as Peter could not walk, needing three people to move him from bed to anywhere else. He couldn’t go to a rehabilitation unit because he wouldn’t be able to participate in any training. His oncologist suggested palliative care as a place to take a breather and work out our strategy for returning home. So we spent a week waiting, and in the meantime, it was the little things that sustained our spirits.

fullsizerender

Yoshi and Helena found this impressive rhino for us in a nearby op-shop. It immediately became our trusty little mascot. 

Having spent quite a bit of time in hospitals, both as an inpatient and as an outpatient, one soon develops a way of relating to staff members. It’s hard not to feel that your fate is in their hands so it seems very important not to get in their bad books. Some staff members relate to you based on their job title rather than as fellow human beings traveling through this life together. Others shine out like beautiful stars in the night sky.

fullsizerender

James was probably our favourite, we even offered to adopt him, seeing, at 26, he is halfway between the ages of our two sons. On the day Peter was being taken to the operating theatre, I overheard James saying he would take Peter as he knew him well. Sometimes connections happens quickly. This one took five days. 

I was lucky to be able to stay with Peter for those two weeks. Before this new round of hospital stays, we decided very early on that we were going as a team. We are very good at hanging out together. There are fun times, and just as many ‘deep and meaningfuls’. Fortunately the staff were happy for me to make up a bed on the floor. (They are not as yet set up to really welcome family members to stay overnight.) Part of that luck we had is that Louis and Tam had moved in just six days before Peter broke the bone in his shoulder. Lhasa and Suki would not have to survive on the birds that frequent our back yard.

img_3491

Tam trying to get Lhasa to smile for the camera, while Suki watches on. Ask me, ask me! 

I have become very good at turning a previously  unfamiliar environment into a home-away-from-home, including finding out where the extra blankets, sheets and towels were kept. I became a familiar face in the kitchen, making milo, filling up water jugs and toasting bread. The cleaning and catering staff soon became my new best friends.

fullsizerender

Sarah and I hit it off immediately. She has been working at the hospital for seven years and enjoys it very much. We came across each other many times in the corridors and the kitchen. One day she asked how my husband was going. On the last day, I introduced her to Peter. She said, ‘Money and house you get from your family, a good woman you get from God’. (I think she was talking about me!) 

By Thursday the 23rd, we had dug into our reserves as deeply as we could. When we discovered there were seven people in front of us on the waiting list for the palliative care ward at the Olivia Newton-John Centre, we were devastated. Catherine, one of the palliative care team at the hospital, suggested we try elsewhere. Caritas Christi in Kew was not too far from our home so we put all our cards on the table. The application went in on Thursday and by Friday morning, Peter was allocated a bed. It felt like the happiest day of our lives. Now we are in a place where the staff are trained to care for people with the kinds of issues Peter is currently facing.

view

Here is the view from our room, looking out towards the west, we enjoy the clouds, the trees, the aeroplanes, birds and bats. 

fullsizerender

Yesterday, Peter picked up his guitar for the first time since ‘the big fall’, and managed to strum a couple of tunes. We’ll get the physio back in to advise on the best way to play without aggravating that shoulder. Good Ruth and Peter! 

Next stop, home.