Another year

This blog is now a year old - plus a few days! I don't update it as regularly as I might and my journal still receives more attention, but the blog continues to chart my wanderings through the Land of New Normal.

It is also a year since I switched from tamoxifen to Aromasin and this anniversary has been marked by the drug going generic in the U.K. So I have just started on the generic exemestane and seem to have gone back to a few of the early, but happily temporary, side effects I had - notably headaches, some dizziness and some gastric upset. Hopefully these will settle down as quickly they did last year. With regard to the more major side effects, the joint pain and stiffness is much worse than it was on tamoxifen and there are some other unpleasant effects. On the up side, the hot flushes and fatigue are a bit better. Overall I feel that the switch has been a good move for me.

This time last year I was in the thick of Appointments Season with annual, quarterly and four monthly appointments all seeming to run together. This year things are a bit different and so far the only seasonal appointment has been last week's regular "medication review" with my GP - probably not the greatest use of time for either of us really! Now that I'm down to two appointments a year, I haven't seen my oncologist this month, and with the genetics issue "done" and the UKFOCSS study over the pressure on my overcrowded diary has eased considerably.

The anniversary day (as opposed to date) of the fateful mammogram was the day of Cat's memorial, while 29th October and 5th November are significant dates too - so I'm now into Anniversary Season. This will run onto this year's shortened Appointments Season with mammogram and seeing my surgeon from the end of November through to mid December. I hope to emerge still clutching the hand of our good friend NED.

Fortunately there are also a lot of pleasant things dotted around this time; seeing friends, autumn walks (lovely one yesterday!), curling and Christmas card making. With all the busyness of summer over I will also return to working on the Storm Rider Quilt project.

Looking back to this time three years ago, I was on holiday and blissfully unaware of the recall letter that was sitting on my doormat at home. Sometimes it seems as if it was only yesterday, while at others it feels a lifetime away. I suspect that feeling is all part of living here in the Land of New Normal.

The Most Tacky ...

As we know all too well, October is filled with a whole range of pink products; many in somewhat questionable taste while others are just plain tacky.

Some cause such a furore that they don't even manage to get off the starting blocks - no mean feat when you consider just what alarming stuff does make it to the market place! That was the fate of the tee-shirt that offended so many people that the charity it was due to 'support' withdrew from the deal. One can only admire the charity concerned for having the courage to admit to their original lack of judgment and then revising their decision.

I think I have just seen my entry for this year's Most Tacky Pink Product. It is a wine glass costing £17.25 with £1 going to a breast cancer charity. It is painted with pink bows and the words 'Mother', 'Daughter', 'Sister', 'Friend', 'Promise'. The product information says "Reason to buy: Fun and Unusual Gift".

I am not of the opinion that all publicity is good publicity - think Gerald Ratner! Neither do I believe that it is necessary to  sink to low levels to raise awareness or cash, or indeed to have fun while doing so - think HIV/AIDS. Indeed much of the pink trivia actually detracts from awareness by giving the impression that breast cancer is no longer a serious disease but a bit of a girly joke and something easily cured.  It also tends to sideline the men diagnosed with breast cancer and does little to raise awareness among men that they could develop the disease.

The truth, as we know, is that while many new treatments can have excellent results and achieve long periods of remission, this is not always the case (see my previous blog post) and the cancer can return at any time. This is not one of the cancers where you can feel safe once you reach the magic five years of disease free survival. Yes, 20 year plus remissions are great when you think of the alternative, but for someone diagnosed at age 40 that would only take them to age 60. Of course there are people who will never relapse or who will die with the disease rather than from it, but there is no way to know whether or not we are one of them until we find out that we're not. So we have to find a way to deal with that uncertainty, incorporate it into our lives and work around it.

So this October my way of dealing with the frightful triviality is to see if I can find the year's most tacky pink product. Tacky is not necessarily downright offensive, it is just, well, tacky. And, while the month isn't finished yet, I think this glass is my entry.

Any other candidates out there?

Not the Post I'd Planned

I had a lovely weekend of autumnal walking and foraging, enjoying the autumn sights and smells while gathering sloes, blackberries and apples. Aware that I hadn't updated the blog for ages, I planned to write about the weekend but was too tired to do so once I'd finished with my loot on Sunday evening. No problem, I thought - I'll do it Monday evening.

Then, last night, I heard the news that Cat - who had been doing rads at the same time as I was back in early 2009 - died yesterday afternoon.

Knowing that she was in hospital, I had been thinking about her a lot over the weekend as I took photos and planned what I'd do with the fruit. I was thinking about her again yesterday as I drove home from work.

She was a great support when I was struggling part way through rads and as we exchanged messages we learnt a bit more about our respective lives and approach to life. We continued to discuss all manner of things and particularly aspects of what might be termed breast cancer politics - including issues of Pinkness and language. A couple of Octobers ago Cat set herself the challenge of taking a daily "cute pink" photo and hitting home the contrasting reality with the accompanying text.

Her untimely death is one of the tragedies of breast cancer and reminds us that - as another friend put it - positivity and bravery are not enough, and that Cat and others have died because no-one has yet found a cure. A cure for a disease that isn't trivial, pink and fluffy.

So this evening I will raise a glass and light a candle to the memory of another great woman who was not tickled pink to find herself diagnosed with breast cancer, never mind with metastatic breast cancer.

Let us remember the realities amid the flurry of pink trivia that will be October.

Quilt update

With all the squares now signed and embroidered I have been able to finalise the design of the Storm Rider quilt. Well, when I say finalise that isn't quite true as I haven't yet totally settled on how I am going to piece the borders, but the main design is done.

I wanted the design to incorporate various aspects of the Storm Rider symbolism; some of the imagery and concepts that the group used (and still do use) to get us all through difficult patches. I was thinking of things like the circle of support around the one struggling, Black Canyon, and the idea that the others would be holding the rope that stopped someone falling into the Canyon. The fact that while each of us has her own journey through the Storm, we draw strength from each other.

The result of all these musings is an all-over design rather than traditional blocks. It consists of a "circle" of the linked signed squares, with a dark central area symbolising the Canyon in which a generic Storm Rider square sits. The placing of the generic square here rather than at the foot of the quilt illustrates that any one of us can be encircled by the support of the others when she needs to be.

At the sides, the signed squares touch the borders symbolising the rope. For squares "hold" the rope and by the joining of the squares everyone is attached to it either directly or through the others. The buttons, which I will be using instead of quilting stitches because of the embroidery, will form a line attaching the generic square to the rope through the circle.

So far, so good. Let the piecing begin!

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"!