a change in time

musings on behavioural change – the small stuff and the big stuff.

Sustaining one’s spirit in tough times

26 Comments

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.

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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.

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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!

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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.

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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.

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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.

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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.

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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.

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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.

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

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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.

 

 

 

26 thoughts on “Sustaining one’s spirit in tough times

  1. You are my heroes. The way you have faced this challenge over the years is extraordinary and your love for each other moves me

  2. Ditto to what Rod wrote. You are an extraordinary team that have adapted with grace to each of the changes life has given you. It’s fantastic that Peter has been strumming some tunes. Music is medicine for the soul. The love that you have for each other sustains and inspires us all. 🌸💖

  3. Dear Peter and Ruth

    Thanks for the update. You have been very much in my thoughts. If you are up for a visit let Melissa know and we can arrange. Melissa and I have discussed this before.

    Lots of Love

    Ross

  4. Next stop…….home. Though it seems when I see photo images of the two of you together that home is where the heart is.

  5. Your journey is so inspiring . Whilst not being close to you both, but however knowing Keith well,,its a marvelous reflection on the strength and fortitude of your family that you are so “together ” and supportive of each other . I admire the strength and love you both share and the journey you both share in . Be assured the deep love you share for each other will be eternal as you both embark upon this amazing journey together , Take comfort that you are both wonderful people and that your inner strength and love for each other is enduring and immortal. Be strong and resilaiant and laugh in the face of adversity . My love and respect to you all — Paul F Dipnall

  6. There are stars that do not shine as brightly as you two, the strength of Rhinos and the integrity of a Buddha must surely accompany you both through every ebb and flow. A privilege to know you and to have been invited into your intimate world. Love, respect and humility.

    Andrew x

    • Thank you for your very kind words, Andrew. I like your image of ‘the strength of a rhino and the integrity of a Buddha’, we’ll do our best to live up to that!

  7. Dear Ruth and Peter, I read your blog with tears in my eyes and a deep admiration. I have watched and walked with you both over the years. Thank you for showing us all what it means to love and laugh, to fight and hope and most of all to find meaning and purpose in the moment and with each other. Please let me know when you get home . . . So that I can visit. Jan xxxx

    • Dear Jan, it’s lovely to hear from you and read your words of encouragement. I know you have walked this road many times with loved ones and that your comments come from having glimpsed this road before. We hope that it won’t be too long before we head home. We will make sure to let you know when that day comes!

  8. Dear Ruth and Peter ~ Thank you for allowing us to follow your progress through your arduous journey. We have never known anyone who has gone through such circumstances with anything near your spirit and optimism. You are an example to all who are now in or might one day find themselves in a similar situation. You are great teachers. We are praying every day that a new treatment will emerge for Peter. Thinking of you always. Much love to you both, and to your nearest and dearest. – – – – Huff and Judy • Eugene, Oregon

    • Dear Huff and Judy, thank you for your love, all the way from Eugene, Oregon, we feel it already. One of the brighter sides of being human is our ability to share our lives and learn from each other. We feel touched to think that our ‘way of being’ is inspiring to others. There are those who have been down similar roads before us that we also have admired. Much love from Melbourne, Australia

  9. That’s an inspiring and wonderful bit of writing Ruth. Thanks. I’m sorry you’ve endured those weeks but glad about the highlights. I love the way you characterise the staff. Chat soon.

  10. Thank yo so much Ruth for the update. I cannot even imagine how deep you both must dig to rise to the relentless succession of challenges. Renee and I think of you both often. We are hiding you in The Light, and wishing we could show up bedside for a little hug and a visit…

    • Hi Patrick and Renee, I must admit I was confused by the photo! I love the thought of you showing up bedside with armfuls of little hugs, I can definitely see it in my mind’s eye! We are on the move back home, with a date set for Monday morning at 10.30. This is what we have aiming for over the last five weeks! Love from ruth and peter xxx

  11. that’s my WordPress guys photo…not sure how he ended up as my emoticon : )

  12. Thank you for this moving and honest account.

    • It’s nice to know that there are people out there who drop by to read our story. Peter died on the 5th of April, so I now find myself back on the roller coaster of life without my most favourite traveling partner.

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