Living with Cancer in the time of Coronavirus

These are strange times. Living through the current Coronavirus crisis is something probably nearly all of us could never have envisaged. Living through it while undergoing cancer treatment is even more surreal.

As I have now finished my Radiotherapy treatment and have a date for my Surgery (21st May), I thought this was a good time to reflect on where I have got to.

It was only 2 months ago, but the day I got my cancer diagnosis almost seems like it happened in a different world now, Of course, in late February we knew something was amiss, but, even after the diagnosis I carried on working as normal, videoing events in Reading and London, and delivering a workshop in Glasgow, which involved my first ever trip on a sleeper train. In the runup to my first Radiotherapy session I had to negotiate with various people in the NHS about getting transport to the sessions. Although we were not yet in lockdown, I was increasingly uneasy at the prospect of travelling from Huddersfield to Leeds by train and then getting a bus from Leeds Railway Station to the hospital 25 times. After the intervention of my GP it was eventually agreed that I could get NHS-provided transport to each session. And that has been something of an illustration of the changes that Covid-19 has brought about. For the first few sessions the NHS transport consisted of an ordinary taxi, and usually involved detours to pick and drop off other patients on the route. Then it switched to always being an NHS Patient Transport ambulance, but still with other patients on board, and then, for the remainder of sessions, it was always me as the only patient, as the NHS policy switched to one patient per vehicle. It wasn’t always an ambulance as the army of volunteers recruited to help the NHS during coronavirus kicked in, and I met some lovely people who were giving up their own time and using their own vehicles to add to the NHS’ resources in these troubled times. A couple of times I even had to do some impromptu digital inclusion work as new volunteers struggled to come to terms with their mobile phone-based reporting systems and satnavs. But 25 times I travelled to St. James’s Hospital in Leeds, and 25 times I came home again.

The Radiotherapy itself was pretty straightforward. You lie on a bed and are strapped into a mask which is designed to make sure you don’t move during the treatment (mine is pictured above). The machine rotates around your head, and then emits a concentrated dose of radiation into the targeted area for about 5 minutes. I never experienced any kind of discomfort during the sessions. I did, however, experience some side-effects, although it is difficult to distinguish which of these are directly attributable to the Radiotherapy, and which could be caused by the multitude of strong painkillers I have been taking throughout the period. The painkillers were necessary because the cancerous tumour was impacting on my nerves causing intense pain. But, whatever the cause, I have had bouts of nausea at various points during the treatment, as well as times of extreme tiredness. There was one particular weekend, early on, when, without the discipline of having to get up for Radiotherapy, I slept for the majority of the two days.

And as the treatment progressed, the lump and the area around it got more and more sore. For the last two weeks, or so, I had to visit the nurses after every Radiotherapy session to have what became an increasingly elaborate dressing applied to protect the skin and reduce the soreness. I, of course, put up with this because it’s a necessary part of banishing the cancer.

And so, things have progressed quite quickly in the past week. On the day following the end of the Radiotherapy I met with the Surgeon who will be doing the operation to remove my tumour. At that point I was told it was likely to be 6 weeks before the surgery could take place. Two days later I got a phone call to say that, pending a satisfactory outcome to an examination on 19th May, the surgery would actually be conducted on 21st May, so the 6 weeks has been truncated to three. The surgery will involve removing the tumour and grafting skin from my back onto my arm. I will need to spend a week in hospital, part of which will be spent draining the wound. Following that, I am told that it should take around a month to regain most of the function of my left arm. And, as I may have indicated, I am left-handed.

So, I am approaching the surgery with a certain amount of trepidation as well as impatience as I want to get it all over with. The only other surgery I have had was 20 years ago on a broken leg, and I don’t have good memories of that with, in particular, the intense pain I felt after waking up, plus the fact that the shape of my oesophagus resulted in a tear caused by the anaesthetic tube which, to this day, causes me to experience acid reflux. I have made sure that the medics are aware of that latter factor. But the fact that the end of the process, and, hopefully, the end of my cancer, has been brought forward is a sense of relief to me. Apart from anything else I need to get back to earning an income.

And that brings me back to Coronavirus. Who knows where we will be in June / July when I should be back to full health? One thing that is pretty likely however is that conferences in the traditional sense will be thin on the ground. I will need to pivot what I do, but, above all else, I hope to have my health, and that overrides everything else.

There are a small amount of lovely people who have been providing me with some financial assistance to help me get through this situation. I won’t say who they are because I am not sure they want me to publicise it; but I am extremely grateful.

If you feel like helping me out in any way, pleas get in touch or you can support me on a regular basis via Patreon or as a one-off here.

Thanks for reading. I hope to see you all again when this is all over.

 

Practice what you preach (sub-title: I’ve got Cancer)

For more than 10 years now I have been advocating and practising the use of Digital Storytelling for social good. I have worked with professionals in the public and voluntary sectors and businesses to help them tell the stories of the differences they make to individuals and communities, and I have worked with people who have turned their lives around and changed track. I passionately believe that these approaches can be effective in making the world a better place, gaining support for effective approaches, and helping people find solidarity from others in similar situations. I have been a particular champion of people telling the stories of how they deal with certain health conditions so others can learn the lessons they have.

So, it would be hypocritical of me not to practice what I preach wouldn’t it? Well I think it would, and that’s why I am here telling you that last Friday (February 28th 2020) I was told that I have cancer. I was told in a very reassuring manner, and I was immediately told that the doctors think that it is extremely likely that I will fully recover from it, but, nevertheless, I was told something that nobody wants to hear. I have a cancerous tumour in my left armpit. A small lump that I noticed some time ago recently started growing rapidly, and then it started causing me pain, which has got more acute by the week. So, last Friday, I found myself sat in front of a cancer specialist at St. James’s Hospital in Leeds as he told me something that I had been expecting to hear after a series of tests of differing natures. I was expecting it by then because I don’t think you get to meet cancer specialists face-to-face if you are going to be told that you don’t have cancer and have never had it.

The doctor set out the treatment options, which were basically a choice between an operation to remove the tumour followed by a course of radiotherapy; or a course of radiotherapy followed by the operation. I asked what the difference would be, and was told that the former would be the option that got rid of the pain I am experiencing the quickest, but the latter offers the best likelihood of retaining as much of the function of my arm as possible. I chose the latter because my left arm is important to me, especially as I am left-handed.

So, on the 19th March I start a course of radiotherapy. This will involve me attending St. James’s Hospital for an hour-or-so every week day for 5 and a half weeks. Following that, there needs to be a four weeks’ resting period before I can have the operation. After that, the doctor has every confidence that I will be free of cancer.

So, it’s as simple as that really. Of course, nothing is ever certain, but I have faith in the NHS, and I really have no choice to be optimistic about the future. I have some short term pain and inconvenience to endure, and then it will all be back to normal. That’s how I am viewing it, any way.

The biggest immediate issues, are 1) the pain, which can be pretty intense at times, but the doctors have been prescribing increasingly powerful painkillers, which are more or less managing it now; and 2) the inconvenience and disruption of having to spend part of every week day for 5½ weeks in a hospital more than 20 miles away from where I live.

I’ll take those inconveniences, however, if it means that the cancer is dealt with. I’d like to mention that my family, particularly my wife, Portia, have been immensely supportive, and that all this is much easier to deal with knowing that I have their support.

Work-wise, I am going to carry on working through this, so if you, or anyone you know, has a need for digital storytelling, video, live-streaming, or social media support services, please get in touch. It is ironic that I was in too much pain a few days ago to attend a meeting about setting up a support mechanism for self-employed people unable to work (this was before my pain meds were increased). I have no choice but to carry on working, and I wouldn’t want it any other way. Since my diagnosis I have live-streamed a two-day conference, as well as live-streaming an evening event in London, jumping on the sleeper train to Glasgow, and delivering a digital inclusion workshop in that Scottish city the next day. I am still capable of working to full capacity and will continue to do so.

And, I will be digital storytelling my way through the process of dealing with my cancer. I hope that, by doing so, I will be able to be of some help to those going through similar challenges.

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Dementia Choices Action Network (D-CAN) – Starting out using video to share

Last week I was very fortunate to be involved, as videographer and digital storyteller, in the inaugural National Assembly of the Dementia Care Choices Action Network (D-CAN). D-CAN brings together a number of stakeholder organisations with an interest in Dementia with NHS England and Improvement, Alzheimer’s Society, the Coalition for Collaborative Care and others, including people living with Dementia. A key aim of the network is to embed the principles of Universal Personalised Care (UPC) into the practice of supporting people with Dementia across the Health, Social Care, and voluntary and community sectors. D-CAN aims to provide a space wherein innovative practice and lived experience can inform practice at all levels.

i am pleased and excited that D-CAN has begun by recognising the power of video in disseminating messages and ensuring that members can learn from each other. Members want to break down the walls that exist between professional disciplines, between different organisations, between organisations and patients, and between people in the room at meetings and those who can’t be there. And it is this latter aspect that I want to talk about here. I have long believed that the public and non-profit sectors are failing to take advantage of the tools that the internet has given us to communicate beyond normal boundaries. Particularly where organisations are seeking to communicate messages and engage people in their work, it seems self-evident to me that using online video and social media will spread their reach far beyond the walls of the room they are in. That this is happening far too infrequently is a great source of frustration. Ian Donaghy, who hosted the Assembly, mentioned a number of online video resources during his comments, and he asked the audience who was aware of them. Very few of them were, and this is telling.

Stepping away from the direct field of Dementia for a moment, I am going to cite the case of Molly Watt. Molly is an inspirational young woman who lives with Usher Syndrome (which causes deaf / blindness). She has created her own Foundation, works as an accessiblity consultant, and uses online video and social media to document her life and how she uses new technologies to live as full a life as possible despite her limited vision and hearing. I know that she has provided inspiration for many others living with the same condition and given them confidence to overcome the barriers they face to achieving their ambitions. Peter Berry was diagnosed with Early Onset Dementia at the age of 50. He has made more than 100 of his weekly video diaries documenting the challenges of living with his condition. Usually his diaries are just him and his camera, but he has occasionally involved his wife, his daughter, and friends to give a perspective on what it’s like living with someone who has Peter’s conditon. A few years ago I was videographer at two North Wales Dementia Meetups. At the first event I interviewed a number of people in the audience who were living with Dementia. Several of them told me that their diagnosis had left them depressed and despondent. A year later, at the second event, some of those people were on the platform telling their stories and recounting how the first event had given them inspiration to turn their lives around and take positive actions to overcome the limitations of their condition.

OK, so the last example is about inspiration coming from the people you directly interact with, but there cannot be any denying that online video amplifies and spreads the ability to learn from how others do things. And that these lessons are all the more powerful when they come from people like you, living daily with the condition you live with than from official sources.

The fact that D-CAN is making some steps towards recognising that online video has a role to play in connecting people beyond physical meetings is, to me, a great, positive step forward. I believe we need to build on this step and roll the use of video into further meetings and into helping those living with Dementia to learn from each other. And we need to extend this practice into many other areas and many other conditions.

The growth of the internet has brought with it an explosion in the use of online video. More than a year ago, a report was published which showed that young people watch Netflix more than they watch the BBC. The millions of hours of online video which exist represent a major learning opportunity that, by and large, our public institutions are not making adequate use of. And they need to be seeding this resource with their own content that people can draw on. I am hopeful that D-CAN can be part of this process.

All the video from the first National Assembly of D-CAN can be viewed here. The video below, of the delegate interviews starts with Christopher Richmond, who lives with Dementia himself, telling his story. This is just the kind of thing I want to be able to support more of.

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Christmas is the Season of Storytelling

Christmas is the season of storytelling. Of course, it is inspired by what many (not just John Wayne) consider to be the “Greatest Story Ever Told”. In recent years it has been the excuse for retailers and marketeers to role out their best efforts at story telling in the form of their Christmas adverts.

I came across the video below on Linkedin when it was shared by Linda Vernon. It’s a great piece of storytelling by the Chartered Society of Physiotherapists about the benefits of their members’ work, and it’s Christmas-themed. It rings all my bells as telling the stories of the benefits of the work of professionals who provide a vital service to our society.

 

Which brings me to #Brexit. Bit of a stretch, maybe, but bear with me. Yesterday, while making some lunch, I turned the radio on and I heard someone say, “the position on Brexit has changed because there are now so many more facts available”. That is, of course, patently absurd. There are no more facts about Britain’s relationship with the EU now than there were at the time of the Referendum in 2016. What has changed is that more people are aware of the facts, and that awareness, in some cases at least, has made them question the decision they made in 2016. I used to have a job which required me to sit on lots of different EU funding committees. Time-and-time again at these meetings I heard European Commission officials complain that the British partners were failing to meet the requirements to give due publicity to the fact that projects were funded by the European Union. Now I was convinced then, and I am even more convinced now, that this was a deliberate strategy by British governments, of differing political hues, to ensure that they, rather than the EU, were able to take the credit for the investments taking place. Is it any wonder, therefore, that the British public were unaware of the benefits of being part of the EU when they were deliberately obscured from them? And, as we are all too aware, in many cases, the areas which have seen the biggest EU investments are also those which voted most strongly for Brexit.

Stories are important, and the EU Referendum of 2016 was won by those who told the most compelling stories, while those on the other side were mainly those who had been suppressing stories about European successes for decades.

I rest my case about the power of storytelling. If I can help you tell stories about the work you do, please get in touch.

 

Live-streaming a Patient Participation Group

I am very excited that this Thursday I will be undertaking what I reckon must be a world-first; I’ll be live streaming a Patient Participation Group (PPG). From 6:45pm, the Library House Surgery PPG in Chorley, Lancashire will be live streamed on the surgery’s Facebook Page. I have long been an advocate for live streaming as a means to involve people in the work of public agencies, and I am very pleased to be part of this groundbreaking opportunity to open up the PPG to those who cannot attend meetings.

I am happy to be working with Healthier Lancashire & South Cumbria and Redmoor Health on this initiative.  For any organisations who want to do something similar to engage wider audiences in their work, please get in touch.

Here’s my YouTube video trailing the event.

Thanks for reading.

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Technology Overcoming Rural Social Isolation

 

A couple of weeks ago I was working at a fabulous, inspirational event, the World Health Innovation Summit Fylde Coast (#WHISFC18) held at the Winter Gardens (above) in Blackpool. If you are not familiar with the umbrella body, the World Health Innovation Summit, check it out here, but, in summary, it is a rapidly growing movement of healthcare professionals and patients dedicated to putting people in control of improving their own health.

This is the first of a series of blog posts stimulated by the people I met and the initiatives I learned about at #WHISFC18.

Professor Niall Hayes is Professor of Information and Organisation at the University of Lancaster. As I was interviewing him for the video below, I became increasingly excited about what he was saying, as I recognised how it accorded with my own interests and ambitions. As part of an EU-funded project, Niall and colleagues have been developing an app called Mobile Age which aims to overcome social isolation among older people in rural South Cumbria. Here Niall talks about the principles behind this work.

 

I chatted further with Niall over lunch, and then he started to demonstrate the app, so I whipped out my camera and captured his explanation (see video below).

Mobile Age is a social connectedness app. It has been co-created with older residents of South Cumbria. At its core is open data about local events which people can use to plan their itinerary and ensure they can get out and about. It encompasses the ability to add events to a calendar as older people often enjoy constructing an agenda for the week and planning ahead.

Critical to the function of the app is an age-friendly map. This has been designed with clear lines which are more visible than some other mapping systems. The map shows benches, toilets (including available toilets within shops) and bus stops. This allows detailed journey planning to take place, including the ability to plan how to get to and from a venue before darkness falls.

Volunteering and educational opportunities are included, as well as links to vital services.

One of the key elements is the personal profile which allows the settings and itineraries to be saved. It also allows someone working remotely to add items into the profile, meaning that someone more tech savvy who is located distant from the user can help them populate their profile and plan their calendar.

I think this is a great initiative which deserves to be used more widely and replicated for use elsewhere. It epitomises my view that technology can be used to bring people together and to help them interact in the physical world, and that it is in no way de-personalising.

 

Added on 18th July 2018:

In the past couple of weeks I have done some work with the Mobile Age team undertaking video interviews to contribute to the evaluation of the programme.

Also, here is a great explanation of the approach given as part of a news item by ITV Border

https://vimeo.com/278734770 

 

Reflections on the (first) Digital Flu Clinic

So, yesterday was the Digital Flu clinic at Seascale Health Centre, in West Cumbria. 392 people came through the centre during the day to get their annual flu jabs. 40 of these signed up to access their health records online for the first time, and 20 or so of them came to see me to get advice on their digital lives.

And there is the rub, and it’s why we were doing this really. Getting nearly 400 people in one place on one day is a rare opportunity in such a sparsely populated part of the country. The fact that such a small proportion of them wanted advice on digital issues shows the scale of the challenge. And it was not because they were sorted for that kind of thing. I engaged a lot of people in conversation about use of the internet. The vast majority of them said things like “I don’t do the internet”, or “I am not interested in that kind of thing”. They were mainly older people, and most of them live in areas where both landline and mobile signals are poor. This is a combination of factors which combines to produce a lack of awareness of the benefits of being online. And, in the cases where connectivity is poor, even if they are willing, they probably won’t be able to pursue their interest.

But, we always knew this was not going to be easy. This event is the start of a process. The surgery wants to interact with people online, to help people manage their health through apps and online processes, and to cut down social isolation by connecting people together. I also met with Councillor Keith Hitchen who talked about the frustrations of carers having to travel long distances to meet and attend events. The traveling cuts into the respite time they have, and they often have to miss large parts of events because of the time it takes to get to and from the venue. Online events and other interactions would be so valuable in these instances.

So, there are a number of strands we will be pursuing in the coming weeks, including looking at ways of tackling connectivity issues, working out the most cost-effective ways of ensuring that people can get independent advice on their digital needs, and working with local organisations to upskill them in areas such as video-conferencing and streaming meetings.

I’ll leave the last word to the couple I talked to about their use of FaceTime. “Do you use it to talk to family abroad?” I asked them. “Yes, only last night we used it to see our newly-born 6th grandchild in Toronto” they said. Don’t you dare try to tell me (or them) that new technologies are de-humanising.

Digital Flu Clinic

This Saturday (7th October) I will be undertaking what I think is another first, a Digital Flu Clinic. What’s that, I hear you ask?

Well, I’ll be working with Seascale Health Centre in Cumbria to provide digital advice to the people who come to the Flu Clinic there this weekend. Like most parts of the health infrastructure, the Health Centre is keen to encourage its patients to take up online health services and use health apps. Many of its patients are older, and that applies particularly to those who are eligible for annual flu jabs. These patients are less likely to be using online services, particularly as broadband and mobile connectivity are poor in the area.

Seascale Health Centre covers an area of some 350 square miles which has a population only of around 5,500. 450 people are booked into the Flu Clinic, so this is a rare opportunity in such a sparsely populated area to get such a large group of people together in one place. And it is an added bonus that most of the 450 will be older people.

I am really looking forward to helping people to get to grips with the issues holding back their digital lives. Solving those issues will have much wider benefits in their lives than simply interacting with health services. I also think we have hit upon a concept that could be replicated elsewhere. Who else is up for a Digital Flu Clinic?

Friendships not Transactions

I need to get this off my chest.

I couldn’t possibly count the number of times people have given me the excuse for not pursuing digital transformation that recipients of services would miss the personal touch. Indeed I am repeatedly told that, for many the regular interaction with their care worker / housing officer / other professional is their only human contact.

I have 2 responses to this argument.

The first is, why are we not making more use of technology to reduce isolation and increase human contact? First priority in this for me is to assist people to use social networking to make new friends who they can subsequently meet in person. Second priority is to connect people together online, whether it be via social media sites, or via video conferencing.

My second response is this. What has our society come to if the only personal contact people have is with those who are paid to deliver a service to them? This is not right and it should not be used as an excuse for holding back progress. I refer you back to my first response for how we should be dealing with this. Let’s help people make and maintain real friendships, not rely on perfunctory transactions for a semblance of human warmth.

Here’s Paro the robot seal which has proven really good at connecting with older people.

Dementia-Friendly Group Video-Conferencing?

Last week I was working at the 2nd North Wales Dementia Meetup (#DementiaNWales). I will blog more about that when I get a chance, and there will be a lot of video content to catch up with soon. But, in the mean time…

I ran a couple of sessions about using technology to make life easier for people with Dementia. In one of the sessions there was an appeal to find a Dementia-friendly group video conferencing app so people can keep in touch with each other.

Personally, I think it must be the case that something suitable already exists. A few months ago I would have confidently said that I think Blab is the one. But then Blab was closed down.

So, is there one that exists, or do we need to invent it? Google Hangouts has been significantly simplified in recent months, but still, when I tried to use it with a group with low levels of digital skills, the majority struggled to access it. Another candidate is HouseParty, an app recently launched by the founders of the demised live streaming app, Meerkat.  Would either of these do the job? Or, of course, there is always Skype, tried and trusted to many now, and offering group video chat as a relatively recent development.

I’d be very interested in people’s views (please leave a comment below) on what the issues are for people with Dementia in accessing group video chat, and whether any of the apps I have suggested might do the job, or does the perfect tool need to be created?