Goodbye to Pink

As we leave October behind I am very thankful to see the back of the awful pinkness of people treating breast cancer as a big joke and an excuse for a giggle. Above is the real colour of October!

It amazes me that anyone could think that a campaign called 'tickled pink' could be anything other than misconceived and insulting at best. After all, what does the phrase mean? Would you say that you were ticked pink to be involved in a road traffic accident, or to have been made redundant? And if not, why on earth would you use the phrase in relation to cancer? 

Wear it pink might be fine if people were being encouraged to wear a pink ribbon or blouse, shirt, tie, wristband etc. for the day. Encouraging pink feather boas, wigs and huge cardboard spectacles while grinning inanely is rather a different matter.  Moreover, while breast cancer affects a large number of people and still kills far too many, there are so many other cancers also in need of research and awareness. 

I suspect that the reason for both the focus and the silliness is because we are back to the school boy behind the bike shed mentality of making anything to do with breasts a bit of a giggle.

And while I'm having a rant about insulting behaviour - I see from the news that Macmillan have appointed to a post designed to counteract some of the cancer myths and misinformation that circulate so freely. This, in theory at least, is an excellent idea. Indeed, many of the specialist cancer charities do issue press releases designed to refute some of the more widely circulating myths. However, if the report I read is accurate, the project seems to have got off to rather a bad start with the post holder making some sweeping and highly patronising remarks about the people she is supposed to be supporting.  

She is reported to have said “Once the doctor says 'cancer', people automatically then shut down and they don’t take in the information they are given ... and then they'll sit online that night and get themselves into a frenzy with what they're reading”. 

While this may well be true of some people, it certainly was not so for me on either diagnosis. Neither was it true for many (indeed most) of the cancer patients I know. Such a general statement about 'people' diagnosed with cancer is at best misguided and patronising and indeed is itself misinformation! It certainly does not engender confidence in the post holder. Moreover, the remarks were totally unnecessary in order to justify her project. All that was needed was a comment that in the digital age misinformation can spread rapidly and extensively until it can appear common knowledge until you look more closely.

Her words do fit the pattern of this charity's disempowering attitude to cancer patients. As someone who has worked in advocacy and empowerment for over 20 years I find this attitude both offensive and unacceptable. If a member of my team was making remarks like this about our clients, we would be having some very serious conversations. In practice, I am pleased to say that I have every confidence that no member of my team would make such remarks. 

Poetry on Prescription

Today is National Poetry Day in the U.K., and fortuitously it was also my regular 3 weekly chemo clinic appointment. The information display screen in the clinic included details of the hospital’s NPD activities so after my appointment I decided to take a look.

Postcards with poems printed on them were being given out at the main hospital entrance and inpatients were being given one of the cards with their lunch trays. There was a display of the poems, selected by what I assume was the event’s organising group, up on the wall outside the main entrance and arcs of excerpts from poems written on the pavement. Although I missed it, there was a poetry reading session over part of the lunch period.

Perhaps the biggest draw for those who had the time was the Emergency Poet, who would prescribe you a few poems. Totally irresistible as far as I was concerned! She was based in an old ambulance, which was interesting in its own right and still retained some of its historic fittings but also had poetry-related additions. Her ‘patients’ (a mix of the hospital’s staff, students, patients and visitors) sat on one of the stretchers with their feet up, while she sat on the opposite one. She then asked questions about your lifestyle, likes and dislikes, how you relaxed, your favourite books, and indeed, whether you usually read poetry. Nothing particularly intrusive and quite cleverly crafted questions so that you could say as much or as little as you chose. 

Based on your answers she selected some poems for you from her file of poems and wrote you a ‘prescription’ of how and where to read them. There was something rather special about coming away with a selection of poems chosen specifically for you.

As I walked to the bus stop with my prescribed anti-emetics for Monday and my prescribed poems sitting side by side in my bag, I was reminded that for many people, of whom I am one, there is an important role for the arts (poetry, visual art, music, dance …) as you go through treatment.

October looms

We’re not half way into September yet and already social media is filling with images of people with silly pink outfits and accessories grinning inanely and reducing to a joke a disease that still kills far too many women and men. 

The argument is that this somehow raises awareness. However, in reality the people who see these images are already well aware. Those in the hard to reach groups, where awareness is still needed, are rather unlikely to see them or to relate them to cancer awareness.

I’m sure that it does support opportunistic fundraising. But at what cost? If we trivialize what is a serious disease we do ourselves and the public at large no favours in the long run. The message becomes lost in the process. Some would argue that the end (fundraising) justifies the means, but that is not a position with which I am comfortable. I have no argument with the calmer statements; the fountain that runs pink during October with signage explaining why, a coffee morning/evening/fundraising event with information. It is the semi-hysterical pinked shrieking that I find so offensive.

You can still have fun while fundraising without turning things into an offensive circus. While I am no fan of Macmillan as an organisation, their World’s Biggest Coffee Morning events are usually enjoyable without trivialising cancer. The HIV community have, from the outset of their awareness and fundraising campaigns, managed to hold events that are both highly successful and thoroughly enjoyable.

Is it because we find breasts a bit embarrassing but not as unmentionable as bowels? A bit of a schoolboy giggle? The Page 3 mentality?

It is 25 years this year since Estée Lauder started their Campaign and co-founded the pink ribbon to raise awareness and funding for research. Time for the rest of us to grow up and leave the embarrassed schoolboy attitude behind the bike sheds.

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.

Targeted!

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.

Hair today, gone tomorrow ...

While by no means all chemotherapy drugs cause hair loss, chemo for primary breast cancer usually includes those that do. It is something that many people find difficult and it is perhaps the most obvious outward sign that you are having treatment.

I’m not entirely sure how I feel about it. Having my long-for-30-years hair cut short was quite a shock to the system, but the very positive reaction I received to the new, if highly temporary, look was a pleasant surprise. Especially as it seemed absolutely genuine rather than because people were trying to be encouraging. Indeed, many people who commented didn't know the reason why I had had it cut. So for a week or so I enjoyed my new look, until the look started changing on a daily basis as more and more hair falls out.

Apart from the nuisance value, I began to consider how other people might perceive me if it was obvious that I was having chemotherapy. At that point I began to get concerned that the promised wig appointment had not materialized, in spite of following up. Chatter in the chemo unit showed similar concerns were common. For almost all of us, it wasn't the regular contact with family, close friends and colleagues that was the issue. Almost everyone was okay with scarves, hats or nothing for that. What was a common cause for concern was attending big social events or business meetings at which ones status as a chemo patient became obvious. I realised that, at least for me, it was about not wanting to be defined by what is happening to me. Not wanting to have people make assumptions about what I can and can't do professionally based on appearance.

So not a moment too soon, I finally had my wig fitting appointment. Some looked awful and some looked very odd indeed but eventually, with a helpful second opinion from a friend who took quick photos of me in the eventual shortlist of two, I found something I think I can live with. 

How much I wear it will remain to be seen and, following conversations with a couple of friends, I am considering getting another one in a different style as an alternative. However, simply having it to hand has made me feel more comfortable with the fact of hair loss.

... but I've already got a job!

As many people with serious illnesses or long term conditions know, they can all too easily turn into a full time occupation. This is particularly so in the immediate aftermath of a cancer (or indeed any other) diagnosis and then at key points during treatment. You feel that you might as well be living at the hospital and in spite of how grateful you feel that things are moving fast to give you a good outcome, it is all too easy to resent the intrusion into what had been your everyday life. 

In my case, this is now somewhat mitigated by my hospital’s excellent computer system that allows anyone working with me to see my appointments at a glance, and indeed track me through the hospital. The recent upshot of this was that after having made an appointment to see me, my breast care nurse then saw that I was due to be at the hospital for a half day procedure with several lengthy waits between appointments. So she called me and arranged that we would meet while I was in the waiting periods. The combination of good staff and supportive tech can make a tremendous difference to patient care and it is good to feel that my time is viewed as valuable.

I’m hoping to sign up to MyChart, which works with the system to enable you to see test results, appointments, etc. 

Of course, it doesn't always fit together so well (the set up admin for MyChart is a bit of an issue), so it still feels like a second full time job at the moment…

Here We Go Again

Here We Go Again

One aspect of life in the land of New Normal is that every now and then, however good your prognosis, the mind turns to the possibility of a recurrence. It is also a fact that having been diagnosed with one cancer increases the probability of being diagnosed with another. 

In the case of breast cancer that includes a contralateral breast cancer with the possibility of completely different pathology - an entirely new cancer. That is just what has happened to me.  The whole process has been very rapid and I now find myself having started chemotherapy; in one clinical trial with sub studies for a drug not routinely given in the early breast cancer setting, and in another very new genomics study.

I’m not being treated at my local hospital this time. This is a less straightforward cancer so I thought I might do better to travel just a bit further to a hospital known for participating in, and indeed the initiation of, cancer research including breast cancer research. It is also a hospital I know well through my patient advocacy work and they are early adopters when new findings are published. It is a very personal decision for which I have weighed up feeling comfortable at this particular breast unit with the additional travel.

Again this time around I have turned to journaling as one of my coping strategies. Blogging is a form of journaling and I hope to maintain this blog throughout my treatment and beyond, also working in my continuing work to bring the patient voice into cancer research. However, I do have to be honest and say that much of my innermost thoughts will not make it into the public domain in the interests of myself and others. While I fully embrace the digital age and thoroughly enjoy using this medium, I still value my privacy enough to take on board the basic rules I learnt when starting to use email and social media 

1. Never put in an email/message something you wouldn't be happy to send on a postcard.
2. Never put on social media something you wouldn't be happy to put on the village notice board.
3. Never fool yourself into thinking you can keep anything you do put out there private.
4. There is a lot more to confidentiality than just not using someone’s name.