Thursday, 15 December 2011

Another Landmark

For the first time since November 2008 I have no letters in the ‘hospital appointments’ file! This won’t last long because within about a week I’ll receive the appointment for this time next year, but it still feels like a hard-earned freedom. A far cry from the times last year when there were at least half a dozen upcoming appointment letters in the file.

The empty file is the result of my check-up this week. The report on my mammogram said that  “only post-treatment changes” showed up and the examination revealed no unexpected problems.  So now I can move to a single annual check-up and mammogram. First it was three monthly, then four, this year it has been two appointments. I still have open access in between appointments if necessary, which gives me a safety net(physical and psychological) should I need one. 

My clinic appointment was for 4.10pm and the clinic was, it goes without saying, running late. A sharp contrast with mammogram appointments which seem to run to time and if you turn up early they will often see you ahead of time. Expecting to wait, I’d taken an absorbing book with me but then had a chat with someone I’d seen in the same clinic last year (worryingly her appointment time was an hour before mine) and discussed whether or not we dared turn up late based on experience – the answer was “no”,  just in case they were running to time and we were then pushed to the end of the day. I also spent some time thinking about the women I’ve met both in person and virtually over the whole BC thing.

It was wonderful to hear good news and until I did, I don’t think I had really realised just how stressed I’d been about it.  Perhaps it was that time in the waiting room where the stress built; at the very least it made it much worse. 

I seem to find planning ahead difficult in the few weeks between the mammogram and the rest of the check-up.  In the first year I found any planning ahead difficult. Year Two was rather disrupted by the genetics and ovarian screening study, not to mention getting my arm/shoulder movement back, and was more about planning around so many appointments than anything else. Generally this year has felt more relaxed, so when this autumn the Storm Riders were planning for a November 2012 get together, I didn’t think twice about it. I didn’t fully realise the significance at the time; it was only last week when I was having difficulty making plans for early January on the basis of “what if …” that I remembered that only weeks before I’d been planning for a year ahead. 

So here I am, entering another year post-diagnosis and having taken another step forward. Okay, for the next few years the end of November and early December are probably not going to be the best time for planning ahead, but outside that window it all looks more promising. Fatigue is still an issue and I have problems with joints, there are other medication side effects, BUT I am feeling much better all round than I did a year ago. I even noticed while curling the other week that I seem to have regained a bit of my (admittedly never good) sense of balance and have become used to the difference in the left/right weight distribution.  

As I reach this three year mark with no evidence of disease (our dear friend NED) I am very aware that some of those I’ve met going through this have not been so fortunate. Some are dealing with recurrence, second primaries or metastatic disease. And it goes without saying that Cat, who died only a few months ago, is very much on my mind this week, together with her family. She was a great support when we did radiotherapy together and I feel that in some way I owe it to her, and to so many others, not to take life for granted but to get on with living it to the full here in the Land of New Normal, whatever this land throws at me.
Carpe Diem!

Thursday, 17 November 2011

More on the NCRI Conference

I have just completed the feedback survey for the conference and when asked what was the most important  thing I'd gained, my answer was: a better understanding of the role of stratified medicine. To a greater or lesser extent it underpinned all of my "top three conference sessions".

As I said in my overview of the event, stratified medicine was a theme that emerged from a number of the sessions covering different cancer sites and treatments. The scene was set for me by an excellent session on the Monday morning and titled simply "Stratified medicine". The first speaker was Albert Bardelli, from University of Torino Medical School, Italy. He spoke about personalised treatment in colorectal cancer, mentioning that one targeted therapy only benefits about 10% of predicted patients in the absence of further selection. He also made the point that it may well be that not all mutations are "equal". He was followed by Jean Charles Soria, from University XI, Paris. This presentation was about selecting the right therapies for lung cancer patients based on predictive molecular markers. He also highlighted the need for molecular input into multi-disciplinary meetings. The final speaker was David Gonzalez de Castro, from the Royal Marsden in London. He made the observation that molecular markers are only of use if the appropriate drugs are available. He then proceeded to provide a kind of checklist:

1. Find the target
2. Know your enemies & friends (+ve and -ve predictive markers)
3. Put the findings into context
4. If it is stubborn, hit it again! And it may be possible to go back to earlier treatments.

The next in my Top Three was later in the day and had a much more lengthy title - Moving Towards a Molecular Rather Than a Risk-based Approach to Selecting Breast Cancer Patients Who Won't Benefit from Standard Treatment. This was hosted by David Cameron from the University of Edinburgh, who pointed out in his introduction that breast cancer is an area where a stratified approach has been validated  in the now routine hormonal and HER2 targeting; with newer therapies now being developed for further sub-groups. John Yarnold from the Royal Marsden spoke first and covered the possibility of reducing the burden of radiotherapy. This was in terms both of optimising hypofractionation, partial breast radiation and dose distribution, and in identifying who doesn't need radiotherapy. He touched upon predictive markers for adverse effects.

Next was Luca Giani from Milan, who pointed out that a one-size-fits-all approach to treatment results in both over and under treatment. He made the points that ER, PR and HER2 status alone don't coincide with the molecular subtypes, and that fewer people benefit from chemotherapy that receive it under current guidelines.

The final speaker for this session was Michael Lisanti from Philadelphia. He presented a parasitic model of cancer with mitachondria powering cancer cells and the possibilities for blocking this activity.

One of the reasons that I found this session particularly interesting is that it presented a sound scientific challenge to the view often seen expressed on breast cancer fora by those having treatment for breast cancer that they want to "throw everything at it". As we all know, treatments have side effects and while some are "only" (!!!) unpleasant, others are life-threatening in the short, medium and long terms. People can and do die as a result of treatment or end up with more limited options in the event of recurrence or metastatic disease. So identifying those for whom a possible treatment is going to have no effect is important. There is no point in "throwing at it" something that will be of no benefit but which carries a serious health risk. I think that is why I find the advances in stratified medicine so exciting.

The last of my Top Three was the Wednesday session on genetic predisposition and the implications for screening, surveillance and management. It considered breast, ovarian, prostate and colorectal cancers. It opened with Douglas Eaton from the University of Cambridge and included mention of one of the studies in which I have taken part. He spoke about the three main areas of genetic risk for breast cancer: the rare high risk mutations (such as the well known BRCA 1 and 2 gene mutations), the rare moderate risk ones and the common low risk mutations (of which 23 have been found so far with more to come). Different loci carry different levels of risk and can also predict ER status. This could possibly be used to inform decisions on the preventative use of drugs such as tamoxifen. Risk with the common low risk mutations is polygenic and the variants combine multiplicatively. Moreover, genetic risk seems to combine multiplicatively with other risk factors (such as mammographic density). About 200 loci for common cancers have been identified so far.

The second speaker was Harry de Koning from Rotterdam. He discussed issues concerning screening starting with the point that screening programmes are directed at those of average risk, relating this particularly to breast and colorectal cancers. In higher risk populations there can be important differences that might suggest different guidelines for different groups. He illustrated this with guidelines for BRCA 1 and 2 mutation carriers. Screening guidelines are the same, but there is evidence to suggest that while adding mammography to MRI for BRCA1 mutation carriers under 40 gives little benefit, it can contribute to detection of breast cancer in BRCA 2 mutation carriers. There is a need for further work on optimal screening for mutation carriers aged over 60.

The final speaker was Mark Robson from Memorial Sloan-Kettering in New York. He spoke about germline information being used to inform local, systemic and follow-up decisions. In particular it can be useful to know the risk of a second primary - not least because reconstruction options may be more limited after radiotherapy. It was interesting to hear him say that at his Centre the prophylactic mastectomy rate is high and although it wasn't always clear that surgical options had been fully discussed, that was driven by the women themselves (who presumably see no need to have lengthy discussions when they have already decided upon their course of action). He also touched upon germline defects being used as therapeutic drug targets. It has been suggested that BRCA 1 mutation cancers might be hyper sensitive to platinum, although that isn't completely clear. They do seem to respond well to taxanes. This is less so for BRCA 2 mutation cancers, where pathological complete responses are less common.

Other aspects were the possibilities of variants being implicated in radiation-induced tumours and in anthracycline cardio-toxicity.

Those were certainly the highlights for me, but I also attended some very interesting plenaries and sessions on screening and prevention, improving cancer survival, survivorship research, and cancer care as disease rather than discipline based. There was a session in which patients shares their experiences of being involved in clinical trials.

I would like to have attended (but couldn't because I was in another session): Improving design and analysis of early phase trials, Raising awareness of cancer research, Lifestyle factors in prevention, Spotlight on survivorship, and Radiotherapy: the quiet revolution.

Monday, 14 November 2011

Conference Part II

The Poster Abstracts catalogue for the recent NCRI Conference listed a total of 738 posters, displayed in two sessions and grouped thematically.  A few had been withdrawn, but clearly there were far too many to see them all by browsing in the time I had available, so I had to be selective.

The Independent Cancer Patients' Voice, a patient advocacy group of which I am a member, had a poster ('Independent Cancer Patients' Voice - speaking clearly and being heard') in Tuesday's session. It gave us an opportunity to meet people and hand out copies of our Year Book.

There were three posters relating to the ovarian cancer screening study I've been in and I was delighted to see that one of them (presenting a decision making model concerning risk reducing surgery) had won one of the NCRI Prize Awards for PhD students submitting an abstract as first author. Congratulations to Jana Witt and team at Cardiff! Of the other two, one looked at the psychological effects of screening in the context of being recalled after an abnormal result which then turned out not to show a problem. The other investigated the reasons prompting women to withdraw from screening and have risk reducing surgery instead.

I was also interested to see another update on the AZURE trial that is looking at adding zolendronic acid to standard adjuvant treatment in primary breast cancer and which suggested a need for further study to look in more detail at the effect of menopausal status.

Others that caught my eye included methods of follow-up; discussing genetic testing with family members; the efficacy of cognitive behavioural interventions to treat menopausal symptoms; increasing recruitment to clinical trials; the provision of information; the prevalence of low vitamin D levels in breast cancer (this one from my own cancer centre) and suggesting that routine testing and, where appropriate, supplementation should be offered.

There was a poster on lifestyle habits and late toxicity after radiotherapy for prostate cancer that I particularly admired for its clarity and beauty of layout.

That is just a brief selection of those I stopped to read.  I could easily have spent a whole morning or afternoon on each of the two sessions looking at the posters and chatting with those presenting them, but there just wasn't enough time for that.

Thursday, 10 November 2011

An Antidote to Pink

I have just returned from this year's National Cancer Research Institute's (NCRI) cancer conference held in Liverpool. After all the hysteria of October it was good to have the opportunity to hear about what is happening across the whole spectrum of cancer research and how this translates to clinical practice. I plan to make a few posts about the conference as I go through my notes and the various bits of paper I picked up, but for now here's a bit of an overview.

There were plenary lectures; workshops, symposia and detailed sessions covering specific interests; posters and abstracts; a trade exhibition; and time for networking. The networking was a chance to catch up with who is doing what and to learn how people and organisations fit into the overall jigsaw of cancer research and practice.

There were also, it goes without saying, social events as part of the networking process. Barts Cancer Institute hosted on Tuesday evening a reception held at The Beatles Story. To be honest, that wasn't a museum I'd have thought of visiting, but it turns out that would have been a mistake. There are interesting period items and room sets and the reception itself was held in an area replicating The Cavern. It was a spectacular place in which to hold a reception and was suitably packed!

There was a considerable consumer presence at this conference (although as you might expect, there was some debate about the expression "consumer"!) with areas set aside specifically for those there on consumer bursaries to meet each other. Consumers also led a few sessions. The NCRI smoothes the way for consumers to attend with a bursary system and by booking accommodation at a hotel opposite the Convention Centre.

The major problem with the conference was the one common to all good conferences, namely choosing which sessions to attend. Sometimes the choice was clear, but on several occasions I really did want to be in two or three places at once.

The theme of stratified medicine, choosing the right treatment for the right patient, came up time and time again across various sites and treatment types. There were some surprises, particularly in the area of chemoprevention and the lack of positive effects from antioxidants. Another surprise was hearing that about 24% of all cancer patients first present as emergencies and that a similar number have been to their GP with their symptoms between three and five times before getting a diagnosis.

There were some exciting developments too. One of these is the Breast Cancer Campaign Tissue Bank, which has had meaningful patient involvement right from the beginning. It is a collaborative project by four of the UK's leading research institutions and there was a demonstration of the online search and request systems at a workshop and reception on Monday evening.

The conference was a packed, worthwhile and enjoyable three days in which I learnt a great deal, met with some very interesting people and thought a bit more about the way in which I would like to contribute to the process of public and patient involvement in cancer research.


Sunday, 23 October 2011

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.

Tuesday, 18 October 2011

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?

Tuesday, 27 September 2011

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.

Monday, 15 August 2011

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!

Thursday, 14 July 2011

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!

Friday, 1 July 2011

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! 

Saturday, 25 June 2011

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"!

Saturday, 18 June 2011

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.

Monday, 13 June 2011

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!

Friday, 3 June 2011

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.

Wednesday, 4 May 2011

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.

Thursday, 14 April 2011

Ready to Swim in Deeper Waters

I had my regular 6 monthly oncology check up yesterday. It is now two years since I finished the acute stage of treatment. I'm delighted to say that all appears to be well.

The "how are you doing?" conversation, which starts as I enter, always carries on while I'm undressing for the 'grope and poke' with which the consultation starts. I'm not sure if he does this to save time or whether he feel it helps dispel any awkwardness that might be felt. Whatever the reason it seems a businesslike approach that works for me. Afterwards he always tells me to take my time getting re-dressed and shuts the door, going back into his office - presumably to have another quick squint at my notes before I get settled into asking questions!

We spent some time discussing how I'm doing on Aromasin and going through the results of my bone density scan. In spite of some ominous rumblings in the letter he sent me back in November with the scan results, it seems that he isn't too worried about that. As I'm now on a weekly bisphosphonate that I seem to be "tolerating well" (and 'tolerating' is probably a highly appropriate word here!), he is happy for me to continue on Aromasin until the five years are up. I'm very happy with this. Although my joints are much stiffer and ache more, my hair is thinning and there are other side effects, I'm feeling so much better in myself than I was on tamoxifen.

But the Big Story is that he feels I can go from 6 monthly oncology checks plus annual mammogram and check up down to a single annual check-up next year. And as the surgical team does the mammogram and subsequent check up, he doesn't plan to see me again. He did make it clear that he isn't dropping out of my follow up care completely as he will liaise with my surgeon before and after my appointments. But yesterday there was no orange form for me to drop in the box at reception as I left; the form that tells the clinic secretary that another appointment is to be made.

I'm left slightly torn between two emotions. The stronger is my delight that he feels it is safe for me to drop to annual check ups, not to mention the less frequent anticipatory anxiety. At the same time, it is a bit scary. It isn't that I feel in any way that I'm being abandoned and I know that the door is open should I need to return. It is just that there is now less of a safety net, and possibly that I'm now taking back more responsibility for monitoring myself. On balance I'm actually very pleased.

As we shook hands and the end of the consultation and hoped (in the nicest possible way) not to see each other again, I was aware of a nervous thrill at the fact that I am now moving away from paddling in the shallow water lapping at the shores of the island that is diagnosis and treatment. Instead I am starting to swim in the deeper waters of the sea that takes me to the land of New Normal.

Wednesday, 23 February 2011

Celebrating Friendship

Last year I started thinking about making a Friendship Quilt for the Storm Riders. This group of women came together online in late 2008 and since then have supported, and continue to support, each other through the storm of breast cancer diagnosis, treatment and moving beyond into the land of New Normal. In part this was done through a frontier-style scenario so the making of a quilt seemed to me a suitably fitting way to celebrate and commemorate our friendship.

I rejected as impractical one traditional method of constructing such a quilt; that of each person piecing her chosen block to a given size and then collecting and assembling them.  Instead I have asked each person to sign a square and then I will embroider the signatures and piece them into a quilt.

Contrary to all the advice given in quiltmaking books, I did not start by planning out the design. This was primarily because I wasn't sure just how many would be returned to me ... What I did do was to use the idea as an excuse to visit my local textile craft shop, which specialises in patchwork and quilting supplies. I then had a thoroughly enjoyable time selecting a series of fabrics that seemed to be in keeping with the scenario, including a pale one for the signatures. I suspect I won't use all those I bought but there were a couple that I just couldn't resist!

Whenever a few of us have been meeting I have taken along squares to be signed and am posting out others to people I'm less likely to see. Fortunately the idea has been received with some enthusiasm on the part of most people. I started embroidering the first batch when I was on holiday last year. Obviously the precious squares travelled in my hand luggage while the needles and scissors went in the checked baggage.

This is a long-term project and one of many occupying my time so it will be a while before it is completed. The Aromasin makes my hands rather stiff at times and so all handwork now takes longer than it used to take. It is, however, a most enjoyable project and it feels a lovely way in which to celebrate an amazing group of women.

Wednesday, 2 February 2011

Pink: to reclaim or not to reclaim

There has been a bit of discussion, blogging, etc. recently around those issues I think of as BC politics (lower case 'p'). I'm thinking of the whole Pink (upper case 'p') debate, questions of language and terminology. One of these - on language - has come from my old school friend, the Feisty Blue Gecko and the other - on Pink - from a newly found friend, the Accidental Amazon.

It isn't unusual to find that someone with a strong opinion on one of these issues also has a strong opinion on the other. Surprise, surprise, I have strong opinions on both! Starting with Pink...

I have no problem with pink as a colour, but I do find its connotations of "sugar and spice" etc severely irritating. Pink as a colour can be strong and vibrant, but oh no, instead it is used to imply giggly, girly, trivial and often more than a little weak and feeble. These implications are totally inappropriate for those who have been/are being treated for and/or are living with breast cancer. These are strong determined women and men who have dealt with and are dealing with the difficulties of treatment and the implications of living with a life-threatening illness from which there is no magical "all clear".

Inappropriate as that may be, when taken into the sphere of campaigning and awareness raising this type of Pinkness can be positively dangerous. All too easily breast cancer can be trivialised into an entertaining, amusing and not really serious disease. It leads people to think that it is okay as cancers go; something easily "cured"and no longer life-threatening - which we all know is not the case. Yes, there have been great improvements in survival thanks to new more effective treatments, but far too many women and men still die of this disease. And for most of us, the treatment is hardly easy (let alone amusing) and learning to live with the uncertainty can be difficult.

There is a school of thought that says that all publicity is good publicity and that if Pinkness helps raise awareness in just a few women or can raise any money for cancer charities, it is a Good Thing. I am not at all convinced by this. My thinking is that all the Pink Trivia can detract from the serious business of investing in long-term research into prevention or ways of controlling the disease for a natural life span. For many women living with breast cancer the Pinkness is irritating at least and often trivialises their experiences.

Personally I am thoroughly uncomfortable with the image of people in pink wigs brandishing pink feather dusters and shrieking around. I'm really not convinced that their antics generate sufficiently significant funding for the image I find far more comforting and exciting - that of people in lab coats working away on the long term research I mentioned above - to make up for the lack of respect their attitude to the disease engenders.

I feel that I would like to reclaim the colour pink; emphasising the strong and vibrant. Rather in the way that some Black and Gay communities have reclaimed words with negative connotations. I'd love that to happen, but I fear that it will prove very difficult because the Pink Trivia is so firmly embedded in popular culture. Looking back at the 1980's Women's Movement I wonder, how on earth did we let this happen? Is it possible to reclaim pink, or is it forever blighted by sugar 'n' spice 'n' all things silly?

We don't have people wearing red wigs, waving red feather dusters and generally being silly in December, yet the events held are usually good fun while at the same time raising funds and awareness. So why can't breast cancer fund and awareness raising be as dignified as that for HIV/AIDS?

Tuesday, 18 January 2011

Chemical Handshake or It's All Electrons

Today has seen a series of breakfast meetings being held at locations around the world by women chemists.  These meetings have celebrated the work and life of Marie Curie, who won the Nobel Prize for Chemistry 100 years ago, and have been an opportunity for networking and discussion. They are also a prequel to the International Year of Chemistry, the official opening of which takes place in Paris at the end of the month. The Breakfasts have used social networking to link together in a chemical handshake around the globe.

I took part in a three time zone breakfast which we held as a Skype conference call. It all started as a bit of a giggle after I posted the Breakfast link to Facebook and two friends thought it would be a fun thing to do. Before long we were into serious planning involving Skype, Twitter and SMS and the result was our conference call this morning. Kathi, being on GMT -5 hours got up alarmingly early to join the Breakfast while for Debbie (GMT +1) and me (GMT) it was a good deal easier! None of us are professional chemists, but all have been interested in chemistry since childhood and have maintained that interest in various ways.

We chatted for about an hour, with Debbie doing a quick "experiment" and uploading the photos to Twitter for us all to see! We sent greetings to the Breakfasts taking place in two UK schools as well as to one taking place in Prague and another at the Open University, UK. We have also greeted the Breakfasts in New Zealand (where they stated the global handshake over 24 hours ago) and in Peru. We talked about what drew us to chemistry and the part it plays in our lives today. It was a fun thing to do and I think we are now looking for opportunities to do something similar again (possibly at a time that doesn't involve one of us getting up at silly o' clock!).

It was particularly meaningful for me as my late father was a chemist and I grew up reading journals such as Chemistry and Industry and Education in Chemistry (not forgetting Plastics and Polymers). He died four years ago today, so joining this Breakfast and my niece being at one organised by her school seems a fitting way to celebrate his life and express thankfulness for the enthusiasm he imparted and the encouragement he gave. It meant that, for me, our Breakfast linked three generations as well as three time zones.

More information about the event at the Twitter tags   

Tuesday, 4 January 2011

Christmas Past

This post has very little, if anything, to do with life in New Normal and isn't really my own thoughts, but it seemed an interesting diversion.

I spent Christmas with my mother. We had a quiet but enjoyable time and got talking about her wartime Christmases and the Christmas of 1944 in particular. Clearly nothing new about that and, knowing my family, possibly normal would be stretching things a bit!

The family background is that her maternal grandparents (who had a large family) had a shop selling records, sheet music, small musical instruments and music sundries such a gramophone needles. She, her brother and mother lived round the corner, her father having died before the war (though for a few years after his death they had moved back with the grandparents). At that point one of her mother's sisters and her two children were living with them and that Christmas the sister's husband was also there on leave and was pressed into service in the shop. Other family members also lived near and the grandparents lived over the shop with their unmarried sons, one of whom was not away as he was in a reserved occupation. One of the married sons was also in the house that Christmas, at home on leave and staying there with his wife.

The run up to Christmas was always busy and as well as the records out in the shop they kept a reserve supply lined up on the dining room table, with record boxes open and sitting in their lids ready for a quick grab. That year the song "White Christmas" was very popular again and it seems to have taken them a bit unawares as it was selling out in the week before Christmas. The son home on leave had to be dispatched to the wholesaler to pick up more. The shop only shut on Christmas Eve (a Sunday that year) when the last of the customers had gone and that was often quite late.  Only when the shop was shut and all the children were in bed or gone to their own homes was the Christmas tree put up and decorated. On top of the tree was a new fairy doll dressed by their grandmother. On Christmas morning it was not unusual to have customers knocking at the side door because they had forgotten to buy such necessaries as gramophone needles and sheet music.

The family had relatives in the Norfolk farming community and my mother remembers them sending up Christmas food on the train each year, including the war years.  It always included one of their turkeys and a box of their cox apples. The family in Norfolk would send a postcard to say the time of the train on which the package had been sent and someone would collect it from the station. Clearly a slightly different postal service from that of today!

After Christmas morning in their own home they walked to their grandparents for Christmas Dinner, the table being extended by the protective top to the billiard table ... Then after dinner the family gathered in the large sitting room of the house in which there was a piano and various members played and sung. Mother recalled that by Christmas 1944 they all knew that the war was drawing to a close. However, there were still rocket attacks from the V2s and there was little or no warning of these.

Because my mother's birthday is two days after Twelfth Night, the decorations were always left up until after her birthday - a tradition we usually continue and are following again this year.

So - quite a contrast with our much quieter Christmas, but then I'm not entirely sure we could take the pace today!

Wishing you all a happy, healthy and peaceful New Year.