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?

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 #IYC2011 #chemhandshake 

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.

Moving into Another Year

The final appointment of this "appointments season" was last week - the climax of it all really. It was the mammogram result and check up with my surgeon.  I was delighted to be told that all is well; that I'm still living with our friend NED (No Evidence of Disease). Now I am striding forward into Year 3.

It was another very positive appointment. Not just because all appears well, but also because they seemed to be genuinely happy for me that the mammogram and exam were clear, that all in all I'm feeling so much better on Aromasin than I had been on tamoxifen, and that the genetic testing hadn't shown a BRCA gene mutation. There was also the welcome news that because I am only just osteopenic, the bisphosphonate may not only protect my bones from further thinning due to the Aromasin but might even restore normal bone density. So I left feeling very positive indeed, and toddled off to buy myself a Year 2 anniversary present. Cancer does give you plenty of opportunities for present buying!

This year I was pleased to find that I wasn't too stressed about the mammogram in advance, but the wait for the result could have been difficult. It was made easier because there were only 8 days to wait for the result and for 4 of them I was away with some of the amazing and supportive women I met through the Breast Cancer Care online Forum. Although we all log into the Forum much less than we used to when we were in the thick of it all, we still look in from time to time and are always there for each other. Small groups meet up every now and then for anything from a couple of hours to a long weekend.

We still do talk about cancer stuff when we get together; it is a relief to be able to talk to people who understand the true situation and who know that outside tabloidland there is no such thing as "the all clear". But in addition to comparing scars and drug side effects there is now a lot of chat about everyday life, work, leisure, families, holidays, etc. Although we meet comparatively rarely and met for the first time only a year ago, such is the bond between us that we behave as if we have all been friends for years.

I sincerely hope that over the coming years cancer will continue to retreat to being an increasingly smaller and smaller part of our lives, in spite of the various permanent legacies with which it leaves us. However, I suspect that for many of us the bond of friendship will continue to evolve, and this is one permanent legacy for which I am exceedingly grateful.

The Trials of Trials and Studies

My experience has been that a cancer diagnosis brings a plethora of invitations to participate in studies. Many of these require only a one-off blood sample and/or questionnaire. A few involve some sort of ongoing regular participation.

In the early days, when standing still was difficult enough and moving forward was just a far off ambition, the decision as to whether or not to take part was very straightforward.  If it seemed likely to be of reasonable benefit to me or to future generations, I tended to do it. As a result, I gave a lot of blood samples, filled in numerous questionnaires and was even interviewed about the involvement of friends and family in my decision making processes.

Now that I am a couple of years on (surgery was 2 years ago tomorrow), I'm a bit more discriminating but still happy to participate in studies involving one-off samples or forms that might lead to important work around understanding and preventing breast cancer or in moving forwards after acute treatment. The difficulty for me is with those studies that involve ongoing participation.

I appreciate that much important work can be done only through ongoing studies, but they also serve as an ongoing reminder.  When I'm down to just an annual visit each to surgeon and oncologist, 4 monthly, or even worse 2 monthly, tests of one sort or another are a less than welcome reminder of the problems that could arise. There is the anxiety that always accompanies waiting for results and even more when repeats are needed or problems, however minor, are identified.

At the moment I am (yet again) feeling somewhat ambivalent about the ovarian screening study. The study people are lovely, the work they are doing is extremely valuable and I have already benefitted from it. However, there is a very big "but", and that is that not only does it raise anxiety from time to time, it also makes it hard to get back to everyday life. So far I have had an ultrasound that had to be repeated, a blood test that triggered a request for a repeat and another that was problematic.

The study people generally present repeat requests in a calming way, but the hospital concerned is not always so considerate. Having said that, the hospital letters can, in retrospect, appear a bit comical! I received 3 letters about a repeat blood test.  The first, from the study, said that because of the variation between my first and second set of results, the computer needed another to establish what is normal for me.  Fair enough I thought, once the initial anxiety subsided. Then I had a letter from the hospital saying that because it was increased from the previous level it had triggered a request for a repeat and I might want to discuss the endometrial thickening with my GP to see if a gynae referral was indicated.  This was followed by another letter from the hospital to say that the (same) blood test reading was "the highest it has been for you" and that they needed to repeat it "just to keep an eye on things"! Oh but please don't be alarmed! Not surprisingly, my initial reaction was to be alarmed. One week the computer just needs further data and then two weeks later they need to keep an eye on things.

Then I stopped and thought about it. This was only my second blood test they were talking about - there was a 50% chance of it being "the highest it has been" for me! That third letter may have been alarmist but it was also vaguely silly.

It does, however, illustrate what for me is the drawback of being in the study. It can trigger a series of extra appointments and additional anxiety. As I wailed in an email to a patient friend "I just want my life back" rather than a string of tests and appointments. Fortunately Common Sense GP agreed with what Reassuring Radiologist had said and we decided that there was no need for a gynae referral unless I started getting worrying symptoms.

A part of me wants to come out of the study so that I don't have the additional tests and anxiety that almost certainly hamper my moving forwards. Balanced against that is the fact that I might derive benefit from it (although my risk is now assessed as being much lower than it was this time last year). Also weighing heavily with me is the fact that if people come out of studies like this just because it is stressful it can spoil the study - there is a psychosocial arm of the study looking at the stress element.

I've spoken with people who say that I should just think about what is right for me, weighing up the moving forward issue with the potential benefit without worrying about spoiling the study. I am mindful though that the study is now in its final year so it could be worth hanging in there for a bit longer. After all, finding a way to live with anxiety, appointments, risk and uncertainty is all part of learning how to live in the Land of New Normal.

And another thing ...

As I mentioned previously, I needed to have a baseline DEXA scan because aromatase inhibitors can cause loss of bone density. So last week I toddled off to yet another hospital for this.  It was one of the easiest and most efficient appointments I have had and, having arrived 5 minutes early, I was actually seen ahead of my appointment time.  The scan itself was painless and quite relaxing, and I was leaving the hospital within 25 minutes of arriving - definitely a record.

Now this was one test/scan about which I was feeling confident.  A few years ago my mother had one and was found to have good dense bones, I do a fair bit of weight bearing exercise and although I bruise horribly when I fall doing things like curling, I've never yet broken anything.  It was therefore quite a shock to receive the letter from my oncologist saying that the scan had shown thinning of the bones in the spine and hip and that I should see my GP to start vitamin D and calcium supplements and discuss a weekly bisphosphonate. As my GP is on holiday I can't even book an appointment yet because of the fact that you can't book more than a certain period in advance (which seems a bit odd when the reason you can't see her before is because she is on holiday.) As I'll be at a conference when booking opens, I don't suppose I'll get one all that soon.  I suppose that gives me more time to research all the possibilities and compile my list of questions.

I did, however, find out that my GP has not received her copy of the letter nor the copy of the scan report. This might not be surprising in light of the fact that the circulation list on the letter names a GP who retired years ago.  This is a little curious because the letter after my check up last month was sent to the correct GP!  What is marginally surprising is that I received my copy of the letter, given that one of the eight mistakes in it is in my address...

This latest news puts me in a bit of a quandary.  Not long after my surgery I decided to cut back considerably on the amount of diary produce I eat and drink.  Although nothing is really proven, there is a theory linking consumption of diary with breast cancer.  While I had no intention of cutting it out completely (I think I may be addicted to cheese), I did decide it would be prudent to reduce it somewhat. Now I am less sure, as it would be a good natural source of calcium. I certainly don't want to go back to tamoxifen, because although some side effects are worse on Aromasin, I really do feel much better in myself on this than I did on tamoxifen.

Now that the initial shock and feeling of "what next?" has worn off, I am very pleased that another benefit of the switch to Aromasin was having the DEXA scan. Were it not for this, I might not have found out until it had progressed from osteopenia to osteoporosis.

Sometimes it seems that part of living in the land of New Normal is that for every few steps forward I take, I end up being blown back a step. The encouragement is that at least I am still gaining ground, just a little more slowly than I would like.

Anniversary Week

Two years ago this afternoon, on Wednesday 5th November 2008 (5th November isn't the sort of date you forget!), I received the phone call that confirmed the diagnosis of breast cancer.  I'd known for a week that they were pretty certain, and now the pathology results had confirmed it.  I was not only strapped into the roller-coaster but it was moving and gathering speed rather alarmingly.

I flung myself into a flurry of information gathering and question listing, even going so far as to google the name of my consultant, just to check up on his credentials.  I was reminded of this approach last week as I prepared for my final appointment with my genetic counsellor.  An appointment that took place exactly two years after being told that they were as certain as they could be pre-biopsy that I had breast cancer.  As usual I had my list of carefully prepared questions with space opposite each one to write in the responses and the discussions we had on the subject.  It all went very well and I emerged feeling good and with a couple of decisions pretty much made.

It was the genetics issue that rather derailed my Grand Plan for Moving Forward of summer 2009.  The fall out from the shock of the September discovery that I met the criteria for genetic testing (when all those around me were being told that they didn't) has meant that I have/will have spent the whole of 2010 waiting for tests or test results of one sort or another.  I don't find this at all easy.  In fact, I hate it when I feel that cancer is dominating my life, although I have hopes that next year the situation will improve and I do now feel that I am moving forwards again.  So the date of last week's appointment seems somewhat auspicious - the start of the next chapter, perhaps?

Another important landmark for me has been my involvement with Breast Cancer Care's "Moving Forwards" initiative for providing resources to those just finishing their hospital-based treatment.  It has given me the opportunity to think through what has happened, how I felt and how I coped, while hoping that some of my experience may be useful to others in a similar position.  For me, moving forwards is involving reflecting on the whole experience so far, trying to integrate it into my life and taking from it any positive points that can help me or other people to reclaim our lives.

This time last year I was in the middle of my first Major Scare, with pain in my affected side when I breathed in.  Imagination ran riot, of course, but it turned out to be just chostochondritis and wore off in a few weeks.

All in all, anniversary week this year has been positive - a good appointment, the thrill and enthusiasm of curling and the fun of the Moving Forwards photoshoot.  It goes without saying that it wouldn't be a cancer event without there being some uncertainty, and I am (of course) waiting for more tests/scans and results.  But when all is said and done I am pleased to be feeling that I am moving forwards again.

To all of my friends in a similar situation - here's to another year!