A different new normal!

This week I am experiencing a different sort of struggle for new normal. The country of Malta has a new bus service. All bus numbers and most routes have changed and it is taking some considerable getting used to on the part of both the new bus company and passengers.

The old yellow Maltese buses were very old and distinctive; the service slow and often quirky. The new bus service has introduced new efficient and less polluting buses and a supposedly more efficient service requiring fewer buses but including larger ones and with more streamlined routes. That is the theory, anyhow. The reality is somewhat different.

I arrived in Malta just after the new service had started and the big improvement I was anticipating is that there is a new bus route going from the airport to the place where I'm staying. I followed the new signage to the airport bus terminus and waited. And waited. And waited. Buses came and went in total chaos, but although there were several for some routes (most of which left the terminus with virtually no passengers) there were none for the anticipated new route for which I was waiting.

The buses have one set of numbers and routes written on their sides, another number displayed at the top front and a third number on cards in the front window. It is this one in the front window, I have now learned, that is the actual bus number - until it is changed by the driver, of course! Much of the time the drivers didn't seem to know their route number and they were constantly changing these cards. A group of inspectors remained over the other side of the road in their air-conditioned cars and a handful of Arriva employees sent out from Liverpool to learn the routes were trying to fend off enquiries. They were lovely chaps, these Liverpool men, but their only advantage over us bewildered customers was that they had brochures and maps of the new routes. Eventually, after realising that he wasn't going to find me my bus in the foreseeable future, one of them gave me his map, put me on a bus for Valletta and told the driver not to charge me for the journey. There was more chaos at Valletta and the new bus station seems to be causing great congestion, but I managed to find the stop for my next bus and got one without too much difficulty.

Since then, every day we have been out and about using buses there have been problems. Buses run at less frequent intervals than advertised. As a result, when they do arrive they are often too full to take any more passengers. Sometimes everything grinds to a halt because the driver says that there are too many people standing on board and that some have to get off, while no-one is prepared to do so. Sometimes buses don't seem to stick to their designated routes and they often 'run short'. The air-con can be a bit over-enthusiastic so that while it is almost 30 C outside people are wrapping up inside the bus! If you ask drivers for information they may tell you they don't know but if they do give it, then it may be completely wrong.

Yesterday I was waiting with a steadily increasing crowd for a well overdue bus at Valletta bus station. Eventually what looked like a hired-in coach with our bus number in the front window arrived. Clearly we were not all going to get on it and by now I was sufficiently used to proceedings to throw aside my British queueing habits in order to ensure that I was not left behind. Because it was an old-fashioned coach, some of the elderly people in the queue had great difficulty getting on board and it took a number of us 'assisting' one chap to get him up the steps. There was great unrest because it was then stated that the bus would not stop in the first area on its route and some people got off again, grumbling loudly. Once on board it was clear that there were no facilities for taking money and issuing tickets - although most people (including me) already had day or weekly ones purchased previously. The driver watched us all get on board, the seats fill and a line of people take up positions for standing. Then he said that no standing was allowed on this bus and that all those standing were to get off. Slightly to my surprise, given previous experience of such standoffs, the standing passengers did get off with little more than a lot more grumbling. I wasn't entirely sure of when I needed to get off the bus but fortunately was sitting next to a very helpful Maltese lady who translated some of the uproar for me and later prompted me when it was my stop.

Some of the drivers are less than helpful and more than a little bit surly. This may be because they are under considerable pressure at the moment, but it isn't helping the situation. On one journey a more than slightly hysterical co-driver gave us totally inaccurate information when we changed buses, although her colleague who was actually driving seemed, thankfully, much more placid. At the other extreme, my return journey yesterday included a highly thoughtful and helpful driver who discussed the best options for my complicated route home, told me what other buses I would need, and when and where to change.

We were intending to buy another weekly ticket for next week but have now decided to limit as far as possible the amount of bus travel next week and not to buy a weekly ticket. And we will NOT be taking the new bus to the airport for our flight to the UK!

Clearly the bus system of Malta is struggling to find the way in its own land of new normal!

The Language of Cancer

At regular intervals the question of language, what terms we like and those we dislike with a passion comes up. It's a very personal thing and, apart from a few terms that seem to win universal acclaim or distaste, one person's pet hate can have someone else smiling.

So here, for what it's worth, is my personal list.

Firstly, the dislikes. I particularly dislike the term "all clear"; scans and mammograms can be clear, but we all know that there is no such thing as "the all clear" with this disease. It also brushes under the carpet the whole issue of living with uncertainty. Every now and then someone may say something like "So you're  cured now?" or "but you're cured now", but for some reason this doesn't annoy me quite as much as does "all clear" and I feel able to reply with something along the lines of "It isn't quite that easy, I'm afraid".

Next on the dislike list is the word "survivor". I know that it has use in being a neat term to describe the increasingly large number of those of us who have been treated, but it sounds wrong to me. In part I think it is because the word has connotations of an incident that may or may not have gone on for a long time, but is now in the past. Survivors of, for example, a road accident may be living with the consequences but the accident itself is past in a way that is just not so with breast cancer (hence the no "all clear").  I do acknowledge that it is useful terminology for government initiatives for better continuing care but I wish a bit more effort would be made to find another descriptive term. When our hospital group was being told about some plans for a "survivorship initiative" there was a load groan in the room at the word "survivorship".

"Back to normal"! That is another dislike. "I expect you are back to normal now". No, I'm not. Things have changed - forever. Some of those changes are very positive and some are less welcome. I am enjoying life, but it isn't the same as it was - and that is not just due to the aromatase inhibitor and bisphosphonate.

I am uncomfortable with the term and concept of a "battle". This isn't a war or battle to be won or lost.  It is a difficult experience with which we each find our own of dealing. I am uncomfortable both with the militaristic language and with the idea that those of us who succumb to this disease have somehow lost or failed. Allied to this is another dislike - the word “brave”. To me, bravery implies choice; such as dashing into a burning building to rescue someone, or a soldier who pulls out an injured colleague at risk to his/her own life. All I could do after diagnosis was get my head down and get on with it.

The final idea/term on my list of dislikes is that of being positive. I know people mean well (at least I think they do!), but injunctions to “keep positive” or statements such as “I know you’ll be all right, you are a positive person” do annoy me. Once treatment started I was positive for a lot of the time, but the last thing I needed was having to keep a cheerful positive image every day for the benefit of other people. There is also another subtle (or possibly not so subtle) undercurrent of blame here; for those who are not “all right” it is their own fault for not being sufficiently positive. It is a way of feeling safe oneself - if it happens to me, I will be fine, because I will be positive.

Enough of the dislike, what terms do I like. Well, I like NED (No Evidence of Disease), of course. We all love good old NED! My oncologist’s letters to my GP have said “no evidence of recurrence” or “no signs of recurrent disease”, which are just as good but not quite as neat as NED. This is so much more honest than “all clear”. To me it is both optimistic and realistic.

I like “new normal” - well I would say that, wouldn’t I? I feel that this term acknowledges the reality while suggesting that things are settling into a pattern of everyday life. Things are different, there is no point in pretending otherwise, but they are normal for me. It includes the idea that things change over time and it allows me to come to terms with the process of change. It makes no judgement about how life is now and how it differs from the way it was. It allows me to think about what I want to do and what I might need to do. It encourages me to think about strategies to deal with things like fatigue, joint pain and appointments.

I particularly like the phrase “living beyond ...” with the connotations of there being so much more to life than cancer while nevertheless including it as a fact of life. Perhaps it also includes the feeling I now have sometimes that I should no longer put off those things that I really want to do.

The phrase I most often use when people ask how I am and I know that they are relating the question to breast cancer is that I am “doing well”. Unless, of course, I not feeling that I am doing well and they are close enough for it to be a genuine question which I wish to answer honestly. 

So at the moment this is how I can describe myself:

I am living beyond cancer here in the land of New Normal and doing well with NED!