Thursday, 31 August 2017

Treatment as Orienteering

Navigating the way through treatment follows a similar course to taking part in an orienteering event. You may have registered in advance by way of diagnostic imaging and pathology, but then the day comes when you receive the official diagnosis and, with your hospital number as good as pinned to your front, you’re headed towards the start line and into the forest.

The first consultation is where you receive your map in the form of the proposed treatment plan, showing the various checkpoints. In my case: joining trial and study, port operation, Neo-adjuvant chemo part 1, mid way imaging and tissue samples, chemo part 2, surgery, radiotherapy, and the ‘finishing point’ of a post treatment appointment. These have to be visited in the correct order and the straight line between each is unlikely to be the actual route taken. You work out the likely routes but know it has to remain a bit flexible. You’ve got your compass and if all else fails and you have an emergency you have your whistle in the form of the 24 hour emergency phone line number.

The various members of the team provide the control descriptions by way of discussions on what to expect. These checkpoints are manned (usually womaned) by oncologists, surgeon, breast care nurse, chemo nurses, clinic staff, etc. All sorts of obstacles are apparent from the map, so deviations from a straight line route will have to be made. 

While you do keep your eye on the whole map and the ‘finish’ (not that there is a real finish here, just an appointment at the end of this acute treatment phase), what really matters is the constant checking of the route you’re currently on to the next checkpoint. Which path will be the easiest? What are the possible obstacles and how will you get around them? There will be small waypoints on the routes between checkpoints (medications to take, blood tests, clinic appointments and questionnaires). What are the actual obstacles and how do you tackle them? What techniques will you use?

You see other runners, some on the same course, others on different ones. Some are on the professionals’ course, as they run trials and studies and they develop new services and ways of doing things. You may meet them at shared checkpoints. As this is a friendly event rather than a major international competition, most runners will make time to exchange words and smiles but all are intent on getting round the course. 

You follow and cross paths, fences, streams as you move along the course. Sometimes you become over-ambitious; that gate vault really wasn't wise!

Gradually, you mark off your arrival at each checkpoint with your electronic dibber. Eventually you will arrive at the finish point of the post treatment appointment, after which you make your weary way home. Hopefully there will have been friends, family, fellow runners and professionals there to cheer your arrival in the finish pen.

Of course, it can also be looked upon in terms of a board game - miss 2 turns as you wait for blood to be taken. Right at the moment I prefer the active imagery (while avoiding the fighting/battle stuff) but I have devised and used a board game in the past when trying to get across the patient ‘experience’ to a variety of professionals. It allows hard hitting points to blend with humour.

So here I am, moving through forest and across open ground, splashing through streams and     sliding under fences, performing the occasional unwise gate vault . Stopping occasionally to check the map, take a breath or admire the view. Dealing with obstacles and route changes but moving steadily round the course.

Thursday, 17 August 2017


Back in December 2014, I had a bit of a rant against Macmillan’s attitude to people attending appointments on their own. I found it unacceptably patronising then and I still do. Unfortunately, they have built on this with advertising and fundraising campaigns and in their presence in hospitals. I can't help but feel that they now have a vested interest in portraying people with cancer as weak and unable to manage without the help of their charity.

The practical outworking of this is that I have now been targeted three times by pushy but needy volunteers who have noticed that I am in the clinic on my own. On one of these occasions I was actually quite deeply engrossed in reading and was still interrupted. They say they would like to speak to me, are quite persistent and seem incapable of taking even quite heavy hints that I don't want to speak to them. And they go on about ‘not facing cancer alone’. I assume they then toddle back to their admin area and record another person they have ‘helped’ in order to justify their funding.

Now, if these were paid employees I would have taken a very strong line at the outset. The difficulty is that not only are they volunteers, but they clearly have their own issues and at least one that I know of is volunteering following their own cancer treatment. They mean well and I suspect some of them are quite vulnerable. It would be easier if they could just take a hint but as they don't seem prepared to do that, I have decided that I now need to be blunt.

I have done my Good Deeds by letting these needy people speak to me but enough is enough. Next time I will be polite but will state outright that I don't wish to speak with them and I will let them know (also politely) why.