Going into prehab

There’s that awful time between diagnosis and treatment where you are sick to the pit of your stomach and trying to get your affairs in order before surgery or chemo-radiation or both.  How can you get yourself fit emotionally and physically for what lies ahead?

There’s a newish word for this pretreatment preparation and it’s called “prehabilitation”.  I love it. The glaring gaps in rehab after head and neck cancer treatment have always interested me but now there is “prehab” to add to the goal of making the patient pathway easier for all concerned – health professionals, patients and families.

To some extent the cancer liaison nurses do this. The hospital asks a liaison nurse to call in after diagnosis or you might ring the Cancer Society yourself. These nurses  are a crutch to help us come to terms with the diagnosis.  What we need, though, is more detailed prehab, maybe head and neck cancer specific prehab.

Psychological help

What strategies can we put in place? For many but not all head and neck cancer patients, life will never be the same again because of dental and swallowing problems, appearance issues and a host of other things. Even those who have emerged seemingly unscathed physically – who look okay and seem to function normally –  can be traumatised for years by the all day surgery and gruelling chemo-radiation. It would be beneficial to have some counselling before the treatment begins. Get some coping strategies in place.

Physical preparation

This is where it could be very interesting. A course at the gym? A session with a physio? Advice on diet? More protein to aid healing during the surgery or radiation? Smoking cessation help? Advice about drinking?

Information

Sometimes leaflets aren’t enough. What else could help? A link to a creditable and calming website like Beyond Five? A talk with a nurse? Ideally you would have a navigator to help you from the start.

As the slide from a prehab workshop shows, a lot of patients would get a feeling of control and agency. You’re in the know and you’re helping steer the ship.

Note

The mural above was produced at a hospital meeting with patients. I found it on Twitter, thanks to  and team. The hashtag is #prehab4cancer.

Here is a link to an article about prehab  as part of an enhanced recovery programme for cancer patients in Scotland.

Joining it all together – Prehabilitation, Enhanced Recovery After Surgery and Rehabilitation

 

Turning point with WordPress

Just not doing it for me writing about everything,  so now … just a blog about writing a blog and some head and neck cancer articles. A means of expression as I navigate the uneasy path of a post-treatment patient in recurrence peril and learning to be a patient advocate.

WordPress? Next stage. Write a few things and hope they will be useful – link people to them. Go back to learning something every day about WordPress.

Random pic.

 

Uses and gratifications

I hear so much doom and gloom about the digital era. A certain gloom about mainstream media. No doubt a lot of this is justified. We don’t want our children glued to a screen instead of climbing trees and we don’t want our world to be filtered by our mobile phone screen every waking hour.

BUT – when I was teaching back in the early NCEA days and a new subject was introduced, Media Studies, I offered to take it and did a first year university paper on it. One theory about the media that stuck in my head was the “uses and gratifications” theory. According to this framework, people can use the media actively instead of being passive recipients of it. The theory in those days referred more to television, radio and newspapers but even with Facebook, Instagram and Twitter, we can use the media and digital modes of communication well or badly. It’s up to us, not the monoliths who have made media and social media available.

I remember being told about a “use and gratification” that was far removed from mere ratings. Ratings that usually determine whether a show like a soap opera will continue. In this anecdote – which I can’t source now – a particular British soap opera was going to stopped because of relatively low ratings. There was an outcry from elderly women living alone. What the producers found was that the show had greater value than the numerical ratings displayed. For this demographic the show performed a social function what you could argue was good for society because it connected lonely old people in a shared story.  I think the decision to stop the show was reversed.

In 2018 we have more media at our fingertips than ever.  I never watch television these days because I can avoid some of the ads by watching Netflix or YouTube or watch according to my own time preference by using TV On Demand. I’ve lost something, a shared cultural experience, but I don’t think there’s any going back now. During last year’s NZ election, some people were watching television for the first time for ages. “Is it always like this, ” said one guy. “Are there always that many ad breaks?” Yeah, I don’t want to go back either but by missing the ads, I’m also missing part of the spirit of the age.

Social media. Hmmm. There are so many abuses of  Facebook, Instagram and Twitter but they have really good uses too. I like to think I use them well, 88% of the time. I’m a bit addicted to Facebook but I do think I am in control of it, not it of me. I block or mute anything I find offensive. I don’t use it as my main news source because that would mean I never went out of my own bubble. LOVE Twitter. You can follow anyone. You can just like and retweet posts you like until people follow you and then write a few hesitant tweets yourself. It’s so good at keeping up with the cancer community and up to date news around the world. Once again, you’re living in a bubble because you can choose who to block or ignore  so you need to read more widely to to get a more balanced sense of the world.

Facebook is the go to tool at the moment for cancer support communities. I feel we need to be on alert though for any more revelations that Facebook exploits our data or is failing to protect communities from malicious onslaughts. I can’t think of any alternative to Facebook right now. Its instant feedback and visual nature make it gratifying and useful for us. I really love the group I help run because it is such a tapestry of humanity – not just venting about our problems but sharing what we find beautiful in life.

https://www.facebook.com/groups/HNCSupport.Aotearoa/

I’ve just listened to an interview with Elon Musk talking about the threat to humanity on account of increasing artificial intelligence (part of the whole digital revolution?) but I’m not going to think about that now. Human beings need connections. As long as we are self aware there’s no harm in using the good things about the media is there?

 

Just how much do you want to know?

“I don’t know how much you want to know,” said the oncologist when I had my first cancer (ovarian) in 1996. I said nothing but the first chance I got,  I grabbed a big cancer book off a shelf in the old Whitcoulls in Queen Street and looked up the possible diagnosis he had given me. Shock, horror. No one seemed to survive it. Later on I said to him, “The stats are terrible.” He bumbled through an answer, poor guy.

We were just on the verge of getting the internet then – the following year I would have it – but in the meantime my cancer was re-diagnosed by a specialist oncologist and treated. I was cured – but the difficulty in getting a diagnosis and the  lack of information seemed to cause me permanent trauma. I suffered my first ever bout of depression AFTER treatment and was never really the same again. Long story. 

So how much does the average cancer patient need to know when first diagnosed? It’s easy for me to say “everything” now after that experience and three subsequent moments of diagnosis for head and neck cancer in the years since then.

Personally I believe this even when I take all factors into consideration because I think that “knowledge is power”. However I have met numerous people who have told me that everyone is different. Some people are not in denial as such, they know very well what’s going on, but they don’t want the gory details. And I can well understand that people need different levels of information as they progress along the cancer pathway.

My attitude to knowledge and information, though,  is partly related to my main coping skill which is quite simply to expect the worst and hope for the best. I have to know the worst case scenario so I don’t get a nasty shock further down the line. I also believe that acceptance is a beautiful word. “Shit happens” in this life and people who accept that save themselves a world of grief.

And a disclaimer here. I have NO religious beliefs but  was also fortunate to live next door to some practising Buddhist meditators for a couple of decades. To my shame I can’t sit still long enough to meditate but the basic philosophy of Buddhism, the “Four Noble Truths” have helped me through many a tight spot. This link is the simplest I could find. 

https://www.school-for-champions.com/religion/buddhism_eightfold_path.htm#.W5bHvegzbIU

I mean I don’t really live this but the knowledge it is there is strangely comforting and fits in with my idea of acceptance of life’s basic truths (while not passively accepting the status quo – no way.) I don’t have any insight into the concept of nirvana. Guess I just like this framework as a philosophy. There is also the beauty of mindfulness and compassion as core values.  

Now the above worship of “acceptance” is all very well if you have not been fully tested but coming from that viewpoint, I believe that an “acceptant” method of coping with head and neck cancer is the best way to go. Break through the fear barrier early and learn as much as you can. Don’t let someone do it for you unless you are very sick. That is disempowering. When you are empowered, you will feel a little less fear. (According to my theory which is just that, my own coping strategy, and not for everyone.)  

And since 1996 there has been a transformation in the way people acquire information. We had no Google back then but since the introduction of this massive search engine, there has been a move to democratise medicine.

Although some patients say they don’t want to know the details, it’s pretty hard to avoid them in this information soaked day and age. A lot of patients are very well-informed about the rarest conditions which their doctors struggle to understand.

An article in the Society of Participatory Medicine has this to say (referring to an article by ePatient Dave (Dave de Bronkart) :

“The power structure of the clinical relationship is inevitably altered,” the article says, “as constraints on patient knowledge are loosened by the internet, apps, and devices,” continuing that this undermines the “paradigm of patients as uninformed recipients of care based on a one-way flow of wisdom from providers.”

This is aligned with SPM’s description of patients shifting “from mere passengers to active drivers” of their care, with physicians welcoming the new behavior.

To achieve the vision of physicians welcoming e-patients, vs saying “stay off the internet,” “new standard must be to teach clinicians to recognize, welcome, and work with empowered ‘e-patients’ in the new model of participatory medicine.”

https://participatorymedicine.org/epatients/2018/09/lead-article-in-influential-journal-proposes-weaving-participatory-medicine-into-clinician-education.html

In this new model of healthcare, the patient is an active participant in their care. E-patients are engaged and empowered and get that way from researching their disease on the dreaded Google, joining other patients in internet groups and using apps that enable them to manage their care. The old hierarchy, the old paternalistic model of “ doctor knows best” is no more, according to this model.

We are by no means there yet though. Certainly not in my little corner of the world.

Another interesting nugget I turned up in my admittedly skimpy research for this piece is that female patients tend to want to know more, especially about psychosocial needs.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2984359/

A lot of studies showed that most patients want to have more information than they are currently receiving.

“Referring and encouraging patients to use the growing number of cancer information centres may be an effective way of ensuring patients have access to information. This study reinforces the finding that most cancer patients wish to know more about a wide range of factors. It also demonstrates that information seeking continues from diagnosis to follow-up.”

https://www.pbs.org/newshour/health/cancer-patients-dont-enough-information-make-decisions-treatments

In some cultures, the whole family or whanau would like to be better informed. A recent PHD thesis on Maori and Pacific families dealing with Starship Children’s Hospital found the following.

“Some of the Pacific men talked about how they had become experts in their child’s care over the extended periods they had been in the hospital. In the provision of healthcare the clinician is often driven by the medical culture.  It has been noted that clinician-based views can be further prejudiced by their background values and social class. As well, training and teachings towards their qualifications create a sense of superiority and authority for them where the doctor holds all the power and knowledge.”

(The writer. Rachel Brown,  quotes a paper by Putsch and Joyce, written way back in 1990, but still …)

http://aut.researchgateway.ac.nz/bitstream/handle/10292/11678/Rachel%20Brown%20Final%20Thesis.pdf?sequence=1&isAllowed=y

Here is Rachel talking to Jesse Mulligan on RNZ last week.

https://www.radionz.co.nz/national/programmes/afternoons/audio/2018661409/tell-me-about-your-thesis

To conclude, being informed, facing up to the truth about one’s cancer, accepting that life is tough for many of us but actively seeking to improve one’s care and health by participating actively in the cancer treatment process is a direction that has a lot to recommend it in my not so humble opinion.

Te ara pai, my Maori language phrase of the day meaning “the good or best way”. 

 

Back on the menu

I do believe I have a structure now. Pages don’t seem to have sub-menus under them so I have a couple of static pages and some menu “categories” for my posts. Up above there is what I would call a decent menu. Mists have not quite cleared yet though. I’m not putting the time into it to make another true breakthrough.

It’s a bit embarrassing as these posts go straight through to Twitter. Never mind. Too old to feel shame about my slow progress through the minefield of WP.

I need two more categories but will add them later. I want to document my walks and books read, films, TV watched. Or can they go under HNC and how I cope? Hmmm. Walked 10,000 steps this afternoon in steady drizzle. Gym yesterday worked legs, chest, back and “tummy”. And rowed the rowing machine for 10 minutes on 2. Very proud.

Watched Crazy Rich Asians last week. From the first minute I knew it was going to be pure Hollywood – everyone amazingly good looking and a bit of a Singapore travelogue but there was some comedy gold and a very engaging lead character. Enjoyable with some stand out scenes. I just though it might have had a little more depth.

Read a Vincent O’Sullivan novel called “All This by Chance”. A Holocaust  novel partly set in Westmere, Auckland. Good. I have read that such trauma is handed down the generations even to the grandchildren and the novel shows this in a convincing way. The ghosts, the demons of the past need to be faced down.  First novel I’ve really enjoyed in a long time.

And WP, here is an irrelevant photo.

orewa from home

Give up menus for now

You have to work on WordPress every day or you forget what you’ve learnt – or I do at my age. I thought I had the menu/category thing sussed but no. I had categories not menus and the categories at top of page just disappeared in a spooky unwanted fashion.

So … I’m just going to write about anything for a week or two while I gather up a new round of energy to watch some You Tubes and take notes. I have paid $90 for three years of Bluehost so I have to continue. Makes me tired thinking of it right now but I WILL prevail.

I’m going to add some irrelevant pics out of spite, WordPress.

Oh, WordPress …

Don’t know what I’ve done but I’ve lost my menu. Tried to add another but lost all visible signs of the others. I have managed to unlearn what I learnt three weeks ago. Solution? I’ll just have to dedicate an exercise book to keep track of what I learn.

I’ve taken my blog out there into the public realm of Twitter and had a comment! It didn’t go though so I have tried to alter the settings to allow that to happen. Will have to ask someone to comment to see if it is okay.

I want to add a “Nature” category to the list of themes. That will be my aim today. Get that sorted. Here’s a picture of what I think is the Long Bay area from the Arkles Bay walkway. Pic of nature is what I want to have as a thread.

neon