Tag Archives: pain

Palace of Care – What do you think is going on?

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Photo by Joanna Kosinska on Unsplash

The hospital doctors said I was very unwell, and that they didn’t have any treatments left for me. They said I might not have much time left.

Did they say how much time you had left?

Two months, maybe a year.

What do you think?

Nah.

You think you have more time?

Yeah. I’m trying the other medicine from the islands. I’ll see if it helps.

Which one is that, the white stuff?

No, the other bottle.

Oh that one. $40 a bottle. How long have you been taking it?

About a month.

What’s it taste like?

Sour. Yuck very sour.

Not as good as the Ribena?

No, I take Ribena afterwards to get rid of the taste of the medicine.

What is it? Is it from your island?

I don’t know, it’s from my partner’s island.

How long have you been together?

18 years.

Where did you meet?

Over here.

How’s your pain?

Okay.

How would you score it out of ten? Zero being no pain, ten being the worst you’ve ever felt.

It’s not bad just a 7. When it is real bad it can go up to 10.

Does the pain medicine help?

Yeah, I think so.

How low does it bring the pain down?

To about 5 or 6.

Does it ever go down further?

No.

How about when you were in hospital, they tried some different medications for you. Did they help?

Nah, it didn’t make any difference.

Okay, we’ll need to try something different as your muscles are twitching.

Why is that?

It’s a side effect and it’s telling us you have come up to your maximum dose with that medication. We need to switch it to something else. I’m hoping it will help your pain more with less twitching.

Palace of Care – Breaking the Circle

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I felt that the hospital doctors wouldn’t give me a straight answer. They kept on going in circles. I had to pin one of them down and asked him how much time I had left. I needed to know as I have important stuff I need to sort out.

What did the doctor tell you?

He said I had two weeks left to live.

How long ago was that?

Two weeks ago. Now I don’t know what’s going on or how much time I have left. I just want people to be honest and direct with me. I can handle it. That’s nothing compared to the pain I’m putting up with in my leg.

I’m not sure how much time you have left, it could be only weeks, but…it could be much shorter if things get worse quicker. I’m worried about you. You have two separate cancers which have put great strain on your body. Your kidneys haven’t been doing well. All of this has made it hard for your body to heal. That’s why your leg wound has been getting worse.

It leaks so much. It just soaks through the pads. We have to keep changing them. I have to position my leg so the liquid will drip away from me. If I don’t my clothes and everything else would get wet.

There’s a risk that your leg could develop an infection which would put you in danger of dying. If this was to happen would you want to go back to hospital for treatment?

What’s the point? Would they be able to do anything for me?

Probably not and I think they wouldn’t be able to take care of your pain as well. I know they’ve tried lots of different medications over the last weeks. Have any of them worked?

Not really, the pain builds up until I can’t handle it. I end up grabbing the arms of the chair while I grimace. The hospital doctor saw me during an episode and she didn’t know how I could handle the pain.

Sounds awful. We made some changes yesterday afternoon, did you notice any difference to your pain?

To be honest, no I don’t think so.

I think your pain will be hard to control. We will keep on trying and will use bigger doses. There is a chance that the medications might make you more sleepy. Would that be okay with you?

If you can control the pain that would be better, I haven’t been able to sleep because the pain has been too bad during the night.

There’s a chance that we might not be able to control your pain no matter what we try. If we can’t control your pain then I would give you stuff to make you less aware of the pain. It would make you sleep. I would only use that as a last resort if everything else failed. If I can’t control the pain I won’t let you suffer.

Good.

Do you have anything else that you still need to take care of?

I’ve already planned my funeral. I have funeral insurance which will pay for it. There are only a few small things I need to sort out with my lawyer.

Better get onto these things. I’d rather you do it too early than too late.

Do you have any questions?

No, you’ve covered everything.

I’m going to start slamming your pain hard because I want to try to bring it down as fast as I can.

Thank you.

You’re welcome. See you later.

Palace of Care – Roller-Coaster Ride

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He had loved his last job and had done well until the stroke. A bolt of lightning had struck him down and rendered one side of his body paralysed. His mind was still intact and his will was strong which allowed him to recover well over the next months. He needed to walk with walking aids and had severe fatigue but he adjusted to his debilitated life. Speaking and writing were still effective forms of communication. Life was different but the strongest organ in his body still functioned well – his brain worked as well as ever.

He had lost the use of his legs earlier in the year. Nothing out of the ordinary had happened before they stopped working. It was thought to be due to a late side-effect of the life-saving radiotherapy he had received decades ago, which had helped to cure the cancer that almost killed him. He hadn’t been out of bed since then without great difficulty. He could not move his legs but the sensory nerves were intact. He was able to cope with the further disability until the pains started. It was a cruel combination, his legs were unable to move but were able to feel nerve-related pain. By the time I visited him at home the pain had been worsening over the past weeks. His medications which included nerve pain agents were not working. The strong opioids we had advised him to have were not controlling his pain but clouded his brain.

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Palace of Care – COVID Symptom Trading Cards

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New day, new symptoms. The whole body aches and pains subsided today which was a relief. Just as I was lulled into a sense of lessening unwellness, something else arrived to knock that idea out. A sore throat the likes of which I had not experienced since I had my tonsils taken out as an adult came to say hello. I would describe it as swallowing rusty liquid razor wire. It was such a lovely greeting that with each swallow I was overwhelmed with emotions and tears came to my eyes. I threw all the medications I had at it, and then some, but nothing worked apart from lying down in the foetal position, but that didn’t bring any relief. Or was I lying down in the recovery position? Probably not as I do not feel recovered as of yet.

I was hungry and had to eat through each painful mouthful. The dry crusty parts of the bread were like sandpaper on my disease-ravaged throat. I winced and grimaced through each gulp of food. My appetite had returned but had to contend with the pain barrier. I persisted and after a few minutes, the pain started to abate. If the drugs don’t work make your own. As a response to the pain, my body produced endogenous opioids, bringing relief to my agonised throat. The second half of the meal was swallowed with relative ease.

Both of my Latissimus dorsi, those big wing-like muscles on the sides of our backs, were aching today as if I’d had a huge workout yesterday, which I hadn’t. My pectorals on the opposite side of the lats also felt similar. I had not done any heavy lifting at all but had done some coughing yesterday. Curious symptoms continue to be collected. What will happen tomorrow?

Palace of Care – Omicron BA.5 variant Top 10 lessons

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Photo by Rodrigo Curi on Unsplash
  1. Writing is difficult when you have brain fog.
  2. Pain does override everything else going on.
  3. End-of-dose pain return is a thing.
  4. Oral medications take a while to kick in.
  5. Nerve-related pain sucks.
  6. I am not alone, many others are going through the same symptoms as me.
  7. Friends have been kind and have offered to drop stuff off.
  8. Being sick for even two days feels awful, I can’t imagine what it feels like for my patients.
  9. It is demoralising when you’ve taken all your medications and you are still in bad pain.
  10. Writing is difficult when you have brain fog.

Palace of Care – A Reluctant Patient

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I first met our reluctant patient in the outpatient clinic with his girlfriend. It had taken a number of phone calls before he would come in for assessment. He was scared of hospice and had resisted his Oncologist referring him to us. He didn’t know what we were about and what he didn’t know frightened him.

He had been unwell with cancer for over a year with severe pain making him unable to sit or lie down for more than an hour at a time. Sleep was difficult for him and he was woken up several times a night by burning pain that spread down his right leg. He wasn’t keen on any changes in medication, and it took much negotiation for him to allow us to increase the doses of the pain relief agents he was already taking. He didn’t want to consider anything new, just yet. As his pain was so severe I offered to admit him into the inpatient unit but he wanted to stay at home.

Over the next month, his pain did improve but any relief would only last for a few days at best. We again offered to admit him for pain control but he still wasn’t ready. Some weeks later the pain had worsened bringing tears to his eyes. His mother and girlfriend were exhausted and felt helpless as they couldn’t help reduce hisWith encouragement from his mother and girlfriend he agreed to be admitted.

We started him on a different opioid that afternoon. The next morning he was full of smiles. He told us he was pain-free for the first time in two years. He stayed a few more days as we helped him with other issues, and then he went home. As well as good pain control we had built a trusting relationship that would help during his next admissions.

THE 5TH VITAL SIGN: PREVENTION AND MANAGEMENT OF ACUTE AND CHRONIC PAIN WORKSHOP

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Palliative doctors and trainees and those interested in pain management might want to check out the upcoming pain management workshop at the shiny new Victorian Comprehensive Cancer Centre.

“This workshop is ideally suited to general practitioners, perioperative physicians, anaesthetists and pain specialists who seek an update on evidence-based management of acute pain in the perioperative setting. We will also highlight the latest research aimed at reducing the transition of acute pain to subacute and chronic pain and its associated morbidity.”

For more information see here 

Saturday, November 12th 2016

Peter MacCallum Cancer Centre,
Victorian Comprehensive Cancer Centre,
Melbourne

The right words matter when talking about pain

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Michael Vagg, Barwon Health

It is no coincidence that we describe the “pain” of loneliness or the “agony” of rejected romantic feelings. Paper cuts can be “excruciatingly painful”, but so can watching the social mishaps of Basil Fawlty or David Brent. Personal criticism can be “stinging”.

The book The Patient’s Brain outlines the evidence that later evolutionary traits such as social cognition and language appear to have grafted themselves onto the ancient brain functions that alerted us to external threats or bodily damage.

Words are neurological events. They are meaning-laden puffs of air that our brain transforms into knowledge, opinions, emotions or danger signals.

Shakespeare, perhaps the greatest wordsmith of all time, frequently used bodily sensations including sensitivity to pain as metaphors. If you’ve ever complained about the “bitter cold”, called an ugly sight an “eyesore” or felt it “sharper than a serpent’s tooth … to have a thankless child” you might know what I mean.

Words affect pain

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Elsewhere in the Palliverse – Weekend Reads

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photo by David Mao itsdavo

I hope you enjoy this week’s reads, which include topics like wills, funerals, dementia, research ethics and the experience of a hospice nurse who becomes carer for her mother. I hope there’s no typos – I’m rushing off to a communication skills workshop but wanted to post this before I leave.

As always, please leave your thoughts in the comments box below.

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Malignant Psoas Syndrome

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Malignant psoas syndrome is said to be extremely rare, but I keep seeing it. Admittedly, working in the pain and palliative care service in a specialist cancer centre, if anyone was going to see it, you would think it would be my team.

I have had three patients with MPS this year and because each time it’s something that the clinical staff are not familiar with, I thought I would share a  short summary with the Palliverse.

The original description of MPS in 1990 (1) described patients with:

  1. Metastatic cancer involving the psoas major muscle either intrinsically (direct intramuscular metastasis), or extrinsically from metastatic retroperitoneal lymph- adenopathy infiltrating into the muscle.
  2. Painful flexion of the ipsilateral hip with positive psoas stretch test (‘‘reverse’’ straight leg raise) related to psoas muscle spasm or irritation.
  3. Clinical evidence of proximal (L1–L4) lumbar plexopathy with spontaneous, burning and lancinating pain associated with hyperalgesia (allodynia and hyperesthesia).
  4. Absence of osseous lumbar vertebral metastases and/or concomitant lumbar polyradiculopathy due to other causes (e.g., malignant neuraxial dissemination, chemotherapy-associated or radiation-induced neurotoxicity).

In 2010, Stevens et al wrote a helpful review (2) of MPS with a case review, mechanisms and theories. Five years ago, according to the paper, there had only been 28 cases reported in the English speaking literature.

I will leave interested readers to explore the papers themselves, but it describes polymodal pharmacotherapy (aka throw everything at it), plus some novel strategies like local anaesthetic block of psoas sheath.

What has encouraged me to put fingers to keyboards tonight though is the referral of yet another patient with psoas syndrome, plus this Japanese case series by Takase et al (3). It describes three patients with MPS who had excellent results with methadone (15-30 mg/day). Their average pain scores were reduced by an astounding 7 points with greatly improved function.

I am pretty keen to try adjuvant methadone for my new referral.

Have you seen any malignant psoas syndrome cases before?Were they recognised and treated as such? How did it go? Particularly keen to hear whether anyone has tried methadone. 

Sonia

References:

1. Stevens MJ, Gonet YM: Malignant psoas syndrome: Recognition of an oncologic entity. Australas Radiol 1990; 34:150–154.

2. Mark John Stevens, Charlotte Atkinson, and Andrew M. Broadbent. Journal of Palliative Medicine. February 2010, 13(2): 211-216. doi:10.1089/jpm.2009.0193.

3. Takase Naoto, Ikegaki Junichi, Nishimura Harumi, Yuasa Sayoko, Ito Yumiko, and Kizawa Yoshiyuki. Journal of Palliative Medicine. July 2015, 18(7): 645-652. doi:10.1089/jpm.2014.0387.