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! 

Robbery at the Post Office

Here, particularly for Jan, is the story of the armed robbery at the Post Office.

This happened years ago, when I was in my early 20s, working in central London and living in north London. One particular day I had finished work early and on my way home from the tube station I called into the Post Office.  A number of counters were open and I was nearly at the head of the queue with just a heavily pregnant woman in front of me when in burst a couple of young men in balaclavas waving some sort of guns around and shouting "nobody move". One advanced to the parcels hatch and demanded it be opened.  When a staff member had opened it he vaulted through with admirable agility, produced a sack and told the staff to fill it with the cash.

At this point his accomplice left and was rapidly followed by most of the queue, particularly those who weren't near the counters. I'd rather liked to have made off myself, especially as I wouldn't have been among the first and so could have changed my mind if they were being shot on exit! However, the pregnant woman in front of me was in distress and clearly wasn't going anywhere, and you just can't run off and abandon a woman in those circumstances, can you?

It didn't take long for the staff to fill the sack and Robber Boy let himself out through the door rather than using the hatch and ran out and off down the road, where he was picked up by Accomplice on a motor bike. I didn't see what followed, but it would appear that he must have loosened his grip on the top of the sack because as they shot up the road the top of the sack fell open and notes flew out and were collected up by passers by!

As he left the building the staff sounded the alarm and the limited number of us remaining were again asked not to leave. Again I would dearly liked to have gone as it was all too clear that a long wait was likely, but again I felt I couldn't leave my new-found friend. The staff came out from behind the counters and started wandering round and when no-one seemed to have taken note of my new friend's condition I decided that if I had to wait then at least things would be done my way. I approached the member of staff who seemed to be in charge and said firmly (in my best imitation of my mother!), "This lady needs a chair and a glass of water. Would you see to it immediately please?" The chair and water were produced and I asked her if she had far to go home and whether anyone could come for her. She said that her husband would come if she could phone him.

At that point the police arrived and said that they would want to speak to each of us in turn and please to be patient. They showed signs of deciding to speak to the staff first, so again my mother-imitation seemed like a good idea and I suggested to one of them that my new friend needed to phone her husband and get home as quickly as possible. This was in the days before we all carried mobiles so we were taken into the office and she phoned him. In fact, the police spoke to the customers first, possibly because they feared my friend might be about to go into labour...  Not long after this her husband arrived and after they'd both thanked me he took her home. I was able to leave in another 5 minutes.

There is rather a nice sequel to this. A couple of years later I had moved a bit further north but still within the same general area and was working locally. One day I was walking between home and work when coming towards me was a man I vaguely recognised and who was carrying a child on his shoulders. As we passed he said to me "Were you in the East Finchley Post Office when it was held up?" I said that I was and realised how I knew him. "You helped my wife," he said. And added, gesturing to the child, "this is the baby"!

Patients Participate!

This was a workshop held today with a view to bringing together people from a wide range of communities (patients, researchers, interested charities) to look at the motivations, challenges and barriers to people accessing biomedical information. It was a day of thought provoking work as we thought through how these challenges can be met. Although I was there as a result of my personal involvement with Independent Cancer Patients' Voice, I also had plenty to think about - and say! - in my work capacity.

The day was introduced by Liz Lyon of the University of Bath. She set the tone in her opening remarks, commenting on the fact that citizens are getting involved in a wide range of projects across a variety of branches of science. She went on to say that sometimes when research is published lay understanding can be lost in the technical language.

Lee-Ann Coleman of the British Library (who hosted the day at their Conference Centre) discussed Open Access and posed the question "does access make it accessible?".  Sara Ellis of the Association of Medical Research Charities reminded us that involving patients at all stages is not always easy and may require organisational cultural change. She also made the extremely important point that involvement must be meaningful and not just tokenistic. This last point chimed with the experience I have had over the last c15 years working in the disability sector.

Melanie Welham from the University of Bath concluded the first part of the Workshop with a consideration of the barriers faced by both patient and academic communities and made the point that better communication leads to wider participation.

After that we moved to smaller working groups to think through the needs of the various groups who access biomedical information, including a discussion on why and how they accessed it. This took some time and was discussed in considerable detail. At the end of the time each workshop came up with a set of key recommendations. These included things like the need to produce clear lay summaries that include things such as any uncertainty in the information and the context within which the research had been done, lay involvement, information formats and open access to information in various layers of detail. Thought was given as to how this could be achieved with further recommendations such as a set of guidelines for producing the lay summaries.

After the recommendations from each group had been fed back there were final presentations from Graham Steel, who is a patient advocate, and from Simon Denegri, chair of Involve. Graham Steel emphasised the use of modern technologies, while Simon Denegri mentioned the new contract the research comminity has with society and the fact that lay summaries can bring the science alive.

The project is ongoing and will continue its work aiming to bridge the gap in access to and understanding of biomedical and health information and research. It is clearly a worthwhile project which should open up the availability of scientific research to a wider community.

My Other Life ?

Picking up the idea of My Other Life suggested by  Journeying Beyond Breast Cancer, I don't think I would say that I have another life. For me, the whole point of life In the Land of New Normal is that following diagnosis and the immediate treatment I am (like many others) getting back to my everyday life but that as a result of the cancer some things have changed. Some of the everyday life gets written about in this blog, but admittedly not all that much as yet.


So readers of my blog will know that I enjoy walking and needlework, am interested in chemistry (thanks to my late father) and that I have recently taken up curling. From other social networking, people may know that I am involved with medieval textiles and living history. What many don't know is just how obsessed I am with a particular group of late medieval businesswomen. So obsessed in fact, that I have an address book full of the names and locations of over 250 women who have been dead for between 400 and 700 years.


A barrister by profession, I now work for a third sector disability organisation where I run an advocacy service. Highly rewarding and totally absorbing work for a charity with some very thoughtful and supportive trustees.


I love reading and music; I played in my school, university and county youth orchestras, but mainly only listen these days. I don't know where I would be without my iPod enabling me to take so much music everywhere I go. I prefer live theatre to film and have been known to go to performances of Shakespeare by both the Royal Shakespeare Company and the local amateur society in the same week, thoroughly enjoying both.


Early this year, spurred on by the need for more weight bearing exercise, I joined an Egyptian dance class. I'm not very good, but am loving it. It is a very different style of dance from the reels and country dances I learnt growing up in Perthshire!


Something I am absolutely no good at is drawing. People have been known to fight over who has to have me in their team for a game of Pictionary!


I don't do as much cooking as I used to. I've never been all that keen on the "what shall we eat tonight" type of cooking, but love what I call production cooking. By which I mean multi-course dinner parties, with days of preparation and the opportunity to bring out the good table linen, china, cutlery and glasses . There doesn't seem to have been much time for that in my life for a good few years now, but I still enjoy it when I get the chance.


That is a bit more about my life and I'm sure that more will appear from time to time in the blog. Almost certainly there will be new experiences that get a mention. There may be passing references to places I've visited in the past (such as the disused quarry where I was fossil hunting by torchlight with my geology class when I found my first trilobite). Possibly there will be reminiscences - did I tell you about the time I was in the post office and it was held up in an armed robbery???


Oh yes, one more thing - we may live on opposite sides of the world today, but fellow blogger the Feisty Blue Gecko and I were at school together!

The Patient's Voice

A couple of weeks ago I was at the Association of Breast Surgery's conference in Manchester. I had intended to post about it before but seem to have been incredibly busy.

I was there with the Independent Cancer Patient's Voice (ICPV), an organisation that aims to bring the patient's voice into clinical trials; which liaises with researchers and encourages, trains and supports patients to get involved.  We had a stand in the exhibition and spent the conference networking and attending sessions.  It was an excellent opportunity to hear about new developments and catch up on new and existing trials and research.

Perhaps the most controversial development that was presented was the 23 Hour Pathway - in effect day surgery but with a possible overnight stay for all non-reconstructive surgery.  While this is, in effect, what happens with great success for many people at the moment, there was some considerable disquiet at the thought of it becoming standard.

There were several reasons for the disquiet. One was a fear of complications and one surgeon pointed out that she operates on a Friday which would mean less back-up being available for a patient at home the day after surgery. Another point raised was that some people's circumstances don't lend themselves to day surgery and if it was standard that might be overlooked. There was a fear that if day surgery is routine it might be seen to imply that it was minor surgery whereas it is usually only the starting point of a potentially difficult treatment process with emotional and psychological impact. It was also pointed out that less time in hospital might make it impossible for Breast Care Nurses and physios to see patients and check on them after their surgery, with a possible detrimental effect on physical and psychological recovery.

ICPV had previously held a study day that included this topic and had produced a briefing paper so we were able to hand this to visitors to our stand as well as to feed into the discussion. It looks likely that this will be rolled out nationally but hopefully the concerns will be noted and the process modified where necessary to take these into account.

Personally I was very pleased to be discharged after slightly more than 23 hours and a night in hospital. But I was also glad that there had been time for my BCN to visit me before surgery and again the next day, and that I had a visit from the physio to check that I knew how and when to do the exercises.

A long way in two years

This time two years ago I was on holiday following my post-radiotherapy check-up. I was feeling encouraged by a positive appointment and had booked a few days in the Yorkshire Dales at a HF Holidays house. I opted to do my own thing rather than book on the guided walks because I knew that I wouldn't be up to a whole day of walking. This turned out to be a wise decision because not only did I tire after a short distance but my rucksack pulled on the surgery scar. However, it was no trouble to amuse myself in such a beautiful area and being back at the house before everyone else meant that I had the swimming pool to myself!

It was a bit frustrating not being able to do a decent walk because walking has been something I have always enjoyed, but I reminded myself that it was early days yet. Sure enough, as time went on I was able to build up to some shortish walks and the 7 mile walk I did with a friend that autumn was a great encouragement. But then I seemed to get stuck. Anything over 8 miles left me struggling and totally exhausted for the next few days. Until Monday.

On Monday, with sunny but not hot weather I took a look at the local OS Explorer map and planned a route that gave me several options along the way. Then I packed my rucksack (a better one these days!) and set off over the footpaths and green lanes around the local farmland and villages. I took it at a steady pace with plenty of stops to admire the butterflies and take the odd photograph or two.

By lunchtime I was still feeling fine and, looking at the map, I decided that I might even manage the extended version of the walk. Refreshed by the picnic I set off again and did indeed extend it, putting in a few extra miles and being rewarded by crossing a field with sheep and lambs who were unusually curious and didn't just run off as I approached.

Back home I looked at the map again and calculated how far I'd walked - just over 11.5 miles. Further by a good deal than I have managed in the last couple of years. Yes, I was very tired that night and was in bed early not only on Monday but also on Tuesday, and no, it is still nowhere near what I would have done before cancer, but it was very satisfying and encouraging.

Fatigue is still an issue for me and I can't dash from one thing to another the way I used to, but I know that I have come a long way since I struggled to do a few miles in the Dales two years ago.