Deborah's Friends - R2BC

We had our annual Deborah's Friends evening last night. Our dear friend Deborah left this world ten years ago and every year since, her childhood, teenage, and college friends, about 30 of us in Israel, have been getting together around her Yahtzeit in March to celebrate friendship.

We always have an activity. We've had formal lectures, practical demonstrations, informal talks, and intimate soirees (usually if the weather is bad) of conversation and discussion. Someone gives a short Bible lesson. we serve a light supper, and we make a collection for a local charity - Zichron Menachem who give information, support, activities, visits, sibling treats, outings and holidays to families with children who have cancer.

This year we decided to make it all about Deborah as it's the 10th anniversary of her passing. Twenty friends reminisced and told stories about our times with Deborah. We looked at pictures going back 40 years. We were all together at summer camps, winter camps, a gap year on a kibbutz, and weekend visits. In between there were inter-city phone calls.  Deborah grew up in Cardiff and the rest of us are from London, Birmingham, Manchester, Liverpool, Sunderland, and Glasgow. (We were only allowed to call after 6 pm and calls were strictly limited - remember how expensive it was to call out of town in the 1970s?). We were college students together, at each other's weddings (well not mine obviously) and watched each others' children growing up (mine is still growing up obviously).

Deborah, aged about 19

After University many of us moved to Israel and kept in touch. Deborah and others stayed in the UK (although some of their grown-up children are now moving here). A couple moved to the US and one to Denmark. There was a void between student days and the internet when it was harder to keep in touch but we now have contact with almost everyone again.

Deborah's husband wrote a moving letter from London as did another close friend. Her sister, Lisa sent a letter from Tel Aviv and Deborah's son, now living in Israel, came with his wife. We laughed and we cried - but mostly laughed.

As a result of Deborah's illness Lisa started BRACHA (which in Hebrew means Blessing). This is an organisation based in Israel to give information, support, advice and to advocate for people with the BRCA 1/2  genetic mutation and anyone living with a high risk of hereditary breast and ovarian cancer. It's an amazing initiative that has saved and will save many lives. If only Deborah had had this information 20 years ago when she first became ill.

I feel truly blessed to have been part of such a wonderful community of friends. All good people who have journeyed together over 40 years and still enjoy each other's company.


Back on track with Reasons 2B Cheerful taking the weekend slot and the Linky is with Mich at Mummy from the Heart for the month of March.

Breast Cancer And the Colour Of Your Underwear

A couple of years ago, around this time of year, women friends started posting on facebook, apropos nothing - what was it? A colour? A dessert? I can't remember. I think it was the colour of their underwear. Last year it was sentences along the lines of: I'm going to Thailand for 7 months; or I'm moving to NY for a year! It was a code for their birthday date.

As a woman, all I had to do was ask and I was let in on the big secret joke of a game. This year I was put on people's mailing lists via fb messages. There's a code and we have to write our information/preference according to the coded key. The result is an X number of women posting the name of a football team or an item of clothing (for example and without giving the exact instructions away so as not to spoil the game).

Why? Well exactly. Apparently it is to raise awareness of breast cancer. Obviously that is a good thing and we have wonderful innovations like Breast Cancer Awareness Month in October. During this month campaigners and educators take the opportunity to raise money and educate the general public about this devastating disease which can affect anyone (I've even heard of a few men getting it) and seems to be on the increase (although, thankfully treatments have become more effective over the years and survival rates are much better than they once were).

Other worthy events and publicity include fundraisers and sponsoring for either research, treatment, care or support. There are articles in print and online, and interviews on TV and radio to: inform people of the dangers, the symptoms, the tests available, the treatments available, the care available, give hope, give support. All of this I understand and I applaud.

What I don't get is how this game, which is essentially a joke on the men, raises cancer awareness. The letter I got said that the game reached TV last year and they hope to do the same this year. And of course, I'm writing about it now - so that's more exposure. But what does this achieve? Is there anyone not aware of the existance of Breast Cancer?

And I don't like this exclusion of men. It's true that men don't usually get breast cancer but try telling any man whose wife has suffered it that he doesn't understand. Us women don't get prostate cancer, men don't get cancer of the uterus or cervix. Nobody don't get a 'get-out-of-cancer-free card'. Oncologists are both male and female.

I know it's a 'game' and maybe I should lighten up. The trouble is, I just don't get it. More than that, I can't see the joke. And surely the surprise element has worn thin after three years of the similar? If you want to play a game let's play a game - I'm the first person to join in with a bit of fun. Cancer, in any form, isn't a game. It isn't jolly good fun for us women to share and have a laugh about. It's cancer.

Ladies Who Lu...mpect 3 - Unexpectedly Elusive

Back in September 2011 I wrote: My good friend, DancingInTheRain, is a career woman, a mother, a wife, a sister, a daughter, a friend to many, a writer, and a dancer. This was her story. Then DancingInTheRain continued her terrifying story in January of this year. You can read Part 2 here. So what other surprises does such an ordeal bring? Read on...

Latest step-by-step update:  Yeh!  All good.  Radiotherapy over.  Latest mammogram negative (good thing, remember?).  Visit to oncologist - no more treatments. Visit to breast surgeon – tick.   

The unexpectedly elusive lump (see LWL 2) was never actually found but those who understand these things agree that whatever it was must surely have been totally eliminated by those radiation rays.   Surely.   As it happens, as with the ‘step by step’ mantra, the ‘unexpectedly elusive’ seems to have become somewhat of a theme during this dance.  The elusive friend (the one who you thought was one of your very best friends but sort of disappeared when the going got tough – well at least in comparison to members of the Ladies Who Lumpect club), the elusive answer as to whether you ever really get rid of breast cancer or is it always lurking round the corner ready to pounce again when you at least expect it,  the elusive feeling of 'I'm trying not to be selfish especially when everyone is always doing their best to make sure I'm okay' when my 2 daughters and semi-adopted daughter have all gone off shopping leaving me all on my lonesome and there is the forever elusive ‘when things get back to normal again’.

I will expand slightly on just one of these ‘unexpectedly elusives’.  The unexpectedly elusive friend. (Midlife said ‘vent’ so I’m venting!)

In my first ‘’story’’ (Ladies Who Lumpect) I waxed lyrical about the camaraderie between all my 1 in 7s as well as the unmitigated support of friends and family.  A million thanks to everyone.  Old friends from the past have re-appeared, newer friends are suddenly always around and all-time friends are simply there non-stop – be it via phone, texting, email, personal facebook messages, home visits, hospital visits or a grand mix of the afore-mentioned.  By non-stop I mean if not every 2 days, then daily or even twice daily.  Certainly not elusive, that is, apart from one all-time ‘friend’ from the old country.  A ‘best’ friend since we were teenagers. 

We had married within a year of each other, ditto re: having kids.  It wouldn’t be an exaggeration to say that although we lived in different towns we more or less shared the last 30+ years.   Nowadays she lives only a 40 minute drive away, doesn’t work, has time and a car on her hands, a healthy relationship with husband and grown up children, financial independence and the means to go wherever she likes, whenever.

Yet she suddenly became unexpectedly elusive, every now and then showing a deep interest in all the intricate details but then forgetting to phone for what seemed like weeks compared to everyone else’s phone calls, despite hints from my loving hubby and even one sarcastic txt msg from yours truly after being somewhat taken aback when she said that she might visit when she had “nothing else on”.   I was totally devastated when, in response to my request for an explanation (in the form of a suggestion that we ‘’talk’’), she explained that she cannot cope with having me in her life anymore because I am unpredictable.  

My immediate gut reaction, you ask?  Well after recoiling from the kick, I yelled silently:  “I am the one with cancer and yet you whinge that you can’t cope with your life (if I am in it).”  What could I say in my defence?  That I am a ‘little’ tense? – definitely;  anxious? – undoubtedly;  emotional? – certainly;  selfish? - quite probably;  but ‘unpredictable’?  Maybe so.  But what could actually be more predictable than unpredictable behavior in someone diagnosed with breast cancer (especially someone who had just been told that her extra lump is still lost and a 3^rd op might be on the cards)?  So I said nothing.  I walked away.  Out of the gates of the cemetery where we had met by chance to attend the memorial service for a mutual friend, exactly 30 days after he had died of cancer.

500 fantastic deeds performed by a whole host of fantastic friends and family should outweigh one shameful deed – so why does this still lie so heavy on my heart?  It’s the answer to that question that still eludes me.

Next oncologist’s check up – in 3 months time.  Current issues on the agenda - step-by-step back to normality for the rest of the family, while for me it’s step-by-step to building a new normality, a normality whose identity I am still seeking.  Normality – a new dance. 

Ladies Who Lu...mpect 2

Back in September 2011 I wrote:

My good friend, DancingInTheRain, is a career woman, a mother, a wife, a sister, a daughter, a friend to many, a writer, and a dancer. This is her story:
It was actually only the beginning of her story and we were left wondering what the impending test results were going be. Here's what happened next:

Take it step by step I was cleverly advised by other ladies who lumpect (LWL). And so on to the next step.  Radiotherapy.  Not that the previous steps were as straightforward as they sounded at the end of my last post.  ‘lumpected and then relumpected’ is what I wrote.  Well it would have sraightforward if they hadn’t actually lost what they were looking for.

But let’s not get ahead of ourselves. The first lumpectomy was actually 2 operations in one.  They start by injecting your boob with turquoise dye. This cleverly works its way into the underarm lymph nodes and stains blue one or two of those very lymph nodes which would have become cancerous if the cancer would already have spread.  They whip them out, test them on the spot for cancer and if all is good (remember, ‘negative’ in the vernacular) they sew you back up again.  If they think the lymph nodes are affected then they remove a whole bunch of them and start worrying about the rest of your body. Fortunately the lymph nodes were clear.

The second part of the operation is the removal of the lump itself.  After undergoing a weird and agonizing piercing procedure you enter the operating theatre with one, two or three wires sticking hedgehog like out of the affected breast.  The idea being that the surgeon digs inside and cuts out the diseased part which should be located between the wires. In my case, I think he was put off by the turquoise nipple because according to the pathological report of the removed specimen, there was still a bit left in.  All the invasive part had been removed but…. a bit of the high grade stuff was still there.  Tip: Good idea to remove all the ‘hg’ because it has a tendency to metamorphose into ‘invasive’ given time.

Well they had indeed warned me of a 50% chance that a re-lumpectomy might be on the cards.  What they hadn’t warned me was that although the pathology lab would diagnose any remaining cancerous cells after the first op, they might also, by mistake, grossly mess up the specimen.  Meaning that it simply wasn’t clear whether the bit of lump that was left was at the top, bottom or one of the sides of the residual hole.

The surgeon was somewhat at a loss.  Scalpel very much at the ready but not sure where to aim and not keen to perform a needless and totally unexpected mastectomy (full breast removal) in order to catch a few roving cells. Patient (me) certainly not keen to have a mastectomy just because the lab had made a mistake and ‘it might be a good idea to be on the safe side’.  Now was the time to call in reinforcements and the Heads of the Breast Oncological Department and the Breast Radiation Unit officially joined the team hunting for the elusive lump.  Tension was rife and the waiting seemed interminable.

The powers that be decided that an MRI scan should do the trick.  MRIs are uncomfortable and noisy and extremely claustrophobic – especially if you have recently had operations on your breast and underarm, not to mention a slipped disc.  Results indeed suggested the presence of unwanted cells and a re-lumpectomy was performed. Mr Surgeon and my dear Hubby ensured that the resultant specimen was delivered to a more reputable pathology lab (between them they smuggled the ‘body in the bag’ out of the hospital) and a long 3 weeks later we were informed that some pre-cancerous cells had been removed.  However, the high grade cancerous ones which we had been looking for were still lurking in one of the ducts.

The surgeon insisted there was nothing left to remove - but the pathology results had shown otherwise.  Fear (on my part) and indecisiveness was in the air.  Appointments with various oncologists only enhanced the tension. The threesome reconvened and agreed that a strong dose of radiation would kill off anything that might still be around. No need for more surgery.

And then they changed their minds.  A mammography scan would determine the need for a re-re-lumpectomy.  But after 2 painful operations there was simply no way that my sensitive, still-turquoise, distorted breast would subject itself to being squeezed mercilessly between 2 platters in order for the scan to take place.  The surgeon agreed with me and mayhem ensued – dissension in the ranks at the weekly departmental committee meeting. 

Special permission was eventually given for 7 weeks of daily radiotherapy (with weekends off for good behavior).  With 250 daily patients, and the same number of personalized radiation treatments, it takes a while for the doctors, physicists and technicians to prepare each individual technical program which includes simulation sessions and tattoos.  One missed angle and the radiation hits your heart or lung - an unpleasant, long-lasting side-effect.  But the waiting was difficult.  It had been 5 months since the original diagnosis and I was becoming more and more scared that the detected, yet still unremoved ‘hg’ might that very minute be metamorphosing and invading. 

Now more than 5 weeks into treatment, although I am suffering the expected side effects of local soreness (imagine sunburn in a very sensitive place – ouch!) and extreme fatigue, the hospital team of doctors, administrators and radiologists are simply fantastic – not to mention friends and family who undertake the daily 1 hour+ journey to ferry me to the hospital – since the original slipped disc/degeneration of the old backbone is preventing me from driving myself. 

Step by step is the mantra and, talking of steps, it is these same friends and family who have been there for me every step of the way.

I have an appointment next week with the oncologist. I am expecting only good news and will be dancing all the way there.  I’ll let you know……

DancingInTheRain

We Ladies Who Lu...mpect

My good friend, DancingInTheRain, is a career woman, a mother, a wife, a sister, a daughter, a friend to many, a writer, and a dancer. This is her story:

Sometime during the transition from 1 in 9 to 1 in 8, when I wasn’t really paying attention, I too became a statistic. 

Almost up till that point I had been the ultimate career woman, if not in a meeting then behind a car wheel, behind a computer screen or behind a podium, with never time for family or friends apart from emergencies when I morphed into a super-dependable Mary Poppins or Marge Proops. 

Indeed it was while recovering from a sudden bad back (me?!?), during which I despondently lurched around the house Hunchback of Notre Dame style, that my GP disapprovingly reminded me I’d missed my last 3 mammograms (note: workaholics have no 'me' time). In fact she kept reminding me because the computer flashed every time she entered my name since I was on the high risk list for breast cancer. 

After three months of bed-rest, traction, physiotherapy, heat therapy and an excruciating steroid spinal injection (not all at once) I was finally able to stand straight enough to undergo the torturous mammogram scan - a necessary endurance but certainly not for the fainthearted. And it was a surprisingly short journey from there to an ultrasound and an on-the-spot, without-a-warning, biopsy.

Sporting what’s known in the trade as lumpy breasts, whereby harmless little cysts make up the breast tissue, I was unconcerned. Still dealing with strengthening the old backbone, getting rid of the limp and looking forward to a revitalised lifestyle full of healthy exercise, it was somewhat of a shock to hear that the biopsy was 'Positive'. This term is a misnomer. In this context, 'Positive' is negative, bad, not what you want at all.

OK you think, 1 in 9, or 1 in 8 as you now learn, or whatever, it has to be someone. Well we all know someone, don’t we? Or even sometwo or somethree. Treatable breast cancer (that might return after treatment), we all know the procedure: operation, radiation or chemotherapy (or both), and tablets, followed by checkups for the rest of your (hopefully long) life. We think we know the procedure - until it starts.

First, a next-day 8am appointment with the breast surgeon, magically arranged by the family GP (could easily get used to this VIP treatment). A lovely patient man and a 10 minute turned 50 minute consultation, during which he explained that a lumpectomy would suffice to remove the offending lump. At least not a mastectomy you think, although the rough sketch he performed with the incision line going straight through the nipple (ouch!) was worrying. After several nightmares I finally plucked up the courage to ask if this was indeed the case and was reassured that it was meant to be a 3D sketch – he actually meant BEHIND the nipple. From that moment on, I decided to ask straight out about anything I didn’t quite understand (like almost everything…).

Strangely, no-one was able to actually feel a lump, but the mammogram CD with the little white dots was there to prove it.  So this is what cancer looks like? And then, not only are they telling me that I have cancer in my left boob – but some of it happens to be invasive – and it might now be already travelling happily throughout the rest of my body. Apparently the rest of it is in-situ, meaning that it’s not going anywhere – it really loves that left breast – but since it's ‘high grade' it might change its mind and decide to move on after all. Bottom line, it all has to be whipped out asap. 

But first it's necessary to check that it hasn’t already moved on and in.  Tests, tests and more tests: Stomach CTs, chest CTs, bone scans, blood tests. Tests which involve fasting, drinking iodine, injections, infusions and lying immobile (seemingly forever) within a cacophonic cylinder. One technician warned I would feel uncomfortably warm in the nether regions as the test progressed, "but don't you dare move".  In fact, the feeling was such that I indeed thought I had inadvertently wet myself. Lucky he warned me so delicately in advance. Honestly, everything is bearable, just seemingly never-ending. And you still have to await the results. By now you know you need a 'Negative'.

Time to choose a well-recommended surgeon. Not knowing where to start you ask friends, family and acquaintances. This is when you realize the significance of the 1 in 8 ratio; nearly everyone you ask has either had a lumpectomy or is close to someone who has had one. Although the ladies who lumpect (LWL) club is not one you would choose to join, once a member, you find yourself, without quite knowing how, surrounded by supportive, knowledgeable, caring women. You really don’t know what you would do without them. 

Ending up with too-long a list of surgeons, some LWL advised that it's actually the oncologist who is the most important long-term doctor and they're basically right. However, while waiting for a life-saving operation that will also change how you look and feel about yourself, it doesn’t seem that way. It’s hard to make a decision. And you don’t want to upset those who went to so much trouble to advise you. I still feel guilty for not choosing the surgeon recommended by two family  members!  Also, whenever something, however tiny, doesn’t go according to plan, niggling doubts about your choice of surgeon are quick to appear. Best to ignore them for peace of mind’s sake, and it’s too late anyway; the lump has been lumpected. And in my case, relumpected.

The results determining the next stage are due any day. Another lumpectomy, a full mastectomy, radiation or chemotherapy - anything goes. Family and friends are jumpy, eager for answers. But as we move through the various stages of discussion, diagnosis, decision and eventually treatment after treatment, we ladies who lumpect have learnt to wait (almost) patiently with 'step by step' as our daily mantra.  

DancingInTheRain