My People.......Barnaby

Yet again,in these "guest blogs" I am blown away by a) the quality of the writing, b) the willingness to contribute and last, but not least c)the amount of emotion that has gone into formulating such a sensitive and cohesive comment on Life with a cancer sufferer! This next blog is by my own amazingly talented all-singing and song-writing son.He has asked me to say that he IS defined by his music, he lives and suffers with it and there is as yet no known cure!He also wants you to know that he is very good-looking, incredibly modest and loves his mum! (He didn't really ask me to say any of that but it sounds like boasting about yourself, when you boast about your children...)
Oh, to hell with it, I'm just going to boast!!! The fact is that I am unerringly proud of him...Yes, for his total focus on his music career in a notoriously difficult field and in a foreign country to boot! I am also grateful that he has this all-cosuming distraction from what is going on at his mum's end! As mothers ,we never want to have our children feel sad or be in any pain..........when it is you who is, to all intents and purposes, causing them that anguish , it is utterly unbearable to contemplate. Thus for a long time I tried to protect him as best I could , but even though Barney is my "youngest", I have learned that he is  way stronger than I thought. He is staunchly protective of ME ,and has proven his love and devotion to me time and again! I am mostly proud to call him my son, because as tough as he is , he is not afraid to show his sensitivity and emotional side. I believe I have raised a decent, honest, loving young man and you can't ask for more than that....Oh....except a walk down the red carpet  on his arm at the Grammys, in the near future!!!

Barney's Blog

I spent a while wondering what I should write about here on my small addition to this blog. The buzz words of 2012 for many people could be "Life", "Change" and "Sacrifice" - with reference to the state of affairs around the world, and in particular in Greece at the moment. The change which in turn leads to sacrifice, always in the hope that it will lead to a better life or an improvement somewhere further down the line. Often without choice. Obviously this set of circumstance could be applied to many different situations, but I feel it's particularly relevant to what happens when someone is suffering from a serious illness such as Cancer.

Cancer is one of the few things in this world that doesn't really need an introduction (though I wrote one anyway!). Just mentioning the word "Cancer" creates an instant response, and hits on certain emotions within people. I think even people who haven't had someone they know go through it inherently understand to a certain degree how serious it is and they have an idea of what a person who has the disease will have to go through to overcome it. There is also the understanding that it will affect those closest to the person suffering, as it is impossible to see someone you love suffer in such a way and not have some kind of reaction.

As my sister mentioned in a previous post everyone finds their own way to deal with it when somebody close to them has the Big C (as it seems to be called here on this blog!). Personally I would say I have been through a huge range of different emotions and feelings when it comes to my mother's situation, which has been ongoing for what feels like (and is) many years, from a grudging acceptance of what is happening, through to utter despair. The fact that somebody you love is reliant on medication and " mathematical possibilities" of survival (from the less serious, "early caught" cancer all the way through to the most aggressive) is something that stays on your mind every day and is accompanied by a feeling of hopelessness that you can't do something more to physically help them overcome the disease. As Gemma also mentioned, we would both happily suffer with Mum's cancer so she wouldn't have to anymore, if only that was an option. Unquestionably though, all of us who care about her would be far worse off, as would she, without her incredible resilience and  point of view on life and living it to the fullest!

There is something to be said for being "positive". Suffering from "positive" cancer (i.e malignant and not benign) but remaining as positive as a person in that situation can be, is just one of the tricks up my mother's sleeve. I have read the many additions to this blog from her friends and close family, and can add to that list countless people who she has met, in some cases only once, who couldn't stop singing her praises afterwards and couldn't believe she was suffering from a such a serious disease. This is my mother's way, life and soul of the party! And that's never gonna change! Of course it doesn't mean that she doesn't then suffer for days afterwards due to her exertions, as the energy used while also being on chemotherapy leads to something akin to the mother of all hangovers, but it is the spirit of living she has that cannot be diminished. To say I am proud of her and the way she deals with this would be the understatement of the century. And it is from the way she goes about it that I believe makes it easier for the rest of us to cope. By rights she could be demanding this and that of her friends, asking why her son and daughter are not there every weekend to help, asking why other family members do not visit or contact her as often as perhaps they should.. The list goes on. But instead of that she is happy, nearly always with a bright outlook (perhaps the amazing, peaceful view of the Argolic Bay and the mountains behind  helps a little!) and eager to laugh and have a good time as much as possible. When she is going through the hardest stages of chemotherapy, usually the first 1-2 weeks immediately after a "session" these things become harder for her to maintain, indeed phone calls are usually off limits for those first few weeks so we tend to speak only online then! But still even then I sense her "trying" to be well, and trying to do as much as she possibly can because a bit like her son she cannot sit still for long! She also becomes my unofficial PR person on facebook posting my latest tracks and promo to her own page, something that I appreciate immensely and can only hope it brings her some comfort and satisfaction to know she doesn't have to worry about me quite so much!

I have many stories I could tell of hospital visits, wig wearing and strangely funny events that have occurred even though Mum was going through chemo, but I believe a lot of them have been covered here really well already by my fellow guest writers along with my mother and sister's own posts. I will just say that I know my mother and I, along with our family and friends, have many many more moments to share together. Without being dramatic, I have never known someone more brave or more willing to face what life has thrown at them than my Mum, she is an inspiration to me and my sister, and we know that she's not going anywhere! It is when you know all of these things about her that you know it's the cancer that has the fight on its hands, not the other way around.

My People......My sister-in-law , Gillie......

Another great guest blog has arrived! I was very happy and grateful when Gillie, Robert's elder sister said she would like to contribute her thoughts and memories to our blog! She tells me often how she thinks and worries about her "little" brother and myself. Lately the miraculous world of information technology (Facebook.....my total obsession,along with online scrabble and my  techno-saviours of late!) has allowed Gillie and I to communicate on a more regular basis than before, and I hope she agrees with me that it has brought us closer!

I would like to return  the compliment on some of Gillie's kind assessments of my character, because I have always, personally, had the greatest of admiration for her! She will tell you that she has suffered all her life from profound deafness, as if she has just been born with a small birthmark on her left buttock! This woman is a role model to us all of how to live with a major disability as if  it has little to no impact on her life! Of course I know this is not the case, but through her courage, determination and sheer guts, she appears as you or I ,to be able to hear every word you say! More than this, (she has chosen not to sign as a personal middle finger to those who think deaf people are any different from the rest of us!) because she lipreads so well, she can tell you what expletives the players or the refs are using in any given football game, or divulge the personal secrets of the couple on the next table in a restaurant! So, as we have been saying in all our blogs, life sometimes throws you a curveball, but if you throw it back, you can  find good in the worst situations!

Gillie loves words, she has a Degree in English, and it shows! There's another reason for my admiration..she studied for it as a mature student, but attended lectures and classes along with everyone else, her mum taking notes for her! Now THAT is brave. She saw it through and obtained her degree, despite her deafness!And for that too, I hold her in the greatest esteem!

She has reminded me of the little inspirational books she sent me a few years back, (just one instance of her caring, sympathetic nature)! I had not forgotten, they are on my bookshelf, but I'll admit, it's been a while since I dipped into them ! So I thought it appropriate to share one of the sayings with you as an introduction to Gillie.....

Deep inside us, we have a spirit of energy and determination,

A spirit that refuses to be broken.....

And we call this Hope.

Even when life's challenges overwhelm us

Our hope inspires us to rise to new heights.

Words and Inspirations from across the miles…………

By way of introduction to those who do not know me, I am Robert’s ‘slightly’ older Sister.  I live over in the UK, with the rest of the ‘P’ tribe (there aren’t that many of us, just Robert’s parents and his other younger sister Helen & our respective families.) We too have been following the highs and lows of Jacqui’s rollercoaster journey over the last few years, albeit across the miles. Forget how many hills, mountains or oceans there are between us…both Robert & Jacqui could not be any closer than in our hearts and minds.

It has been ‘hard’ at times, (for want of a better word) living so far away while Jacqui has been bravely dealing with cancer for as long as she has. There is an old English saying…“out of sight… out of mind”… but I can assure you that this could not be further from the truth.  Since Jacqui was first diagnosed with breast cancer there have been countless communications between us, courtesy of the global telecommunications network and that ‘trusty’ old airmail postal service…or should that be pigeon carrier or snail mail as Robert has jokingly called it?  Goodness knows how people used to cope before the invention of all this advanced technology at our disposal… Electronic mail, I-pads, Face Book, Skype, Twitter,  Androids, Blackberries, Apples and whatever other ‘cyber’ communications there are out there all, winging their way across time and space….. anyway, I digress.  Communications aside, we have relied heavily on crossing our fingers too (we all suffer with crossed finger syndrome) and we have often needed to reassure ourselves that when we don’t hear anything for a while that “no news is good news”….another one of those common old English adages!

 We do all appreciate that it must get very wearying for anybody suffering with an illness like cancer to keep being asked the same questions about how they are feeling every time somebody writes to them or phones them.  I’ll admit it got to the point that I felt like I was always ‘pussy footing’ around the subject desperately looking for the right words to say…those well intended and sincerely meant, positive words of encouragement that all cancer sufferers everywhere must hear over and over, time and time again.

 When Robert and Jacqui got married and left our shores for pastures new and their wonderful new life in Greece, we were very happy and thrilled for them both….nothing could have prepared us for the bombshell that was soon to follow.  I remember feeling a sense of shock and utter disbelief; it seemed so unfair that this should happen to somebody who was so young, fit and healthy. I tried to put myself in Jacqui’s shoes and think how I would feel if it were me.  I will admit that I was at a loss to know what I would do… although having lived with a profound hearing loss all of my life, I am all too familiar with the need to adopt good coping strategies when dealing with any of life’s difficulties.

But this is not about me and having a disability pales in significance compared to somebody who has a serious illness like cancer.  I do believe  however that any personal struggle or hardship can always be overcome by strength of mind and self belief … that was when I first decided that I would send Jacqui a book of inspirational prose, in the hope that this would offer some welcome food for thought….a bit like chicken soup for the soul.  I am sure there are some people who would say “Yikes!” and ask why on earth anyone would want to read a bunch of soppy quotes?   On the contrary!  I think many people underestimate the healing and comforting power of words and their magical ability to turn a life around. 

I know Jacqui has a favourite quotation of her own that “What does not kill us makes us stronger” (Freidrich Nietzsche) which is proof enough that words of wisdom can and do help in those private moments of need.

  I once worked in a busy hospital as a medical coder (many moons ago now) and I soon learned that cancer does not discriminate and every patient that passes through the doors of any medical facility is totally unique. The knowledge I acquired from the job alone has made it much easier for me to understand what Cancer is all about and what Jacqui has actually been going through on her own personal journey.

I have learned a lot about Jacqui’s strength of character over the years….she is an eternal optimist and she does not do ‘negative’ and ‘failure’ is not a word that exists in her vocabulary. Neither is she the kind of person who would ever dream of quitting. Think of a game of chess…. metaphorically speaking, to me  Jacqui is just like that single pawn that is not fazed in the slightest when confronted with ALL the obstacles blocking her way on the opposite side of the board!   I have always believed that her ability to combat her cancer battle for so long is down to her ‘kick ass’ attitude to life,  self preservation and her gutsy determination….She has a wicked sense of humour too and yes she can certainly sing and dance with the best of them!  As all Jacqui’s best buddies will tell you, she has many other talents too… and before I forget, she speaks several languages that also includes ‘canine’ sign language which she uses for Floyd their beloved and totally deaf Dogo Argentino! 

 The Jacqui I know loves life immensely, she is always great company, a generous hostess, a good conversationalist and she is very competitive too…I know this because she plays a brilliant game of scrabble!!  It wasn’t till I played a few games with her myself that I was introduced to words that I never even knew existed!  I honestly don’t know many people who can massively rack up their scrabble scores with just 7 vowels or 7 consonants!! Combine Jacqui’s intelligence with that unerring 100% resilience, bravery, courage, good humour, positivity, add to that the love and support from Robert who has been her rock, plus the deep love and affection which Gemma and Barnaby undoubtedly both hold for their mother…now in my book that has all the ingredients required for an inspirational winning recipe…..

You are not Alone

Hi Everyone, Gemma here.

So there’s a TV show on in the UK right now called “The Voice”  and I’ve just finished watching tonight’s show and felt I wanted to share a few thoughts. The final artist performing was a girl called Bo who sang Kate Bush’s “Running up that Hill”. Link to "Running up that Hill" Original Video

They said her mother is very sick right now and so the song had a particular resonance for her because it’s about wanting to make a deal with God to swap places with the person that is suffering.

I know that I said in my first ever post that going through this experience (for the patient and for their family) isn’t always a sad, morose affair and that you can find moments of lightness and laughter that lift your mood and ultimately I believe that those moments can also help a person’s recovery. However, it would be mad not to mention that there are dark moments. For anyone touched by this disease. I am not afraid to say I cried my way through that performance. Sobbed my heart out. I felt her pain and I wish with all my being that I could take my mum’s place and save her from all this suffering.  I often feel really helpless and guilty. I wish I could do more.

My mum is my best friend. She is the person I consult and want to continue to consult for advice when I’m making all of life’s major decisions; buying my first home, choosing a wedding dress,  having babies,  wearing red or pink lipstick(!). I know she is scared as hell about not being around for these milestones in the future in mine and my brother’s lives and I can’t bear to think about the possibility, but it’s a reality that I may have to face. I get on with my day to day life in a city in another country that’s many miles away from my mum and most of the time I don’t think about it, but like tonight, sometimes, unexpectedly something strikes a chord and catches me by surprise and next thing I know I’m in tears. Like my mum said in an earlier post, life goes on, you have to find a way to live with this on a day to day basis. Mum’s found her ways to cope (I have absolutely no idea how, but she’s incredible), my brother’s found his, as has my Stepdad and all my Mum’s “People”. We all find a way to carry on and try not let it get us down. But it’s ok to feel the pain sometimes. It’s ok to have a bloody good cry and feel sorry for yourself and for the person going through it. It’s really important to say how you feel and get that emotion out there. It helps. There are millions of cancer sufferers all over the world and each and every one of them is having their own unique experience. It’s a comfort to know that you’re not the only one in this situation and my mum has found comfort in online cancer support groups and has actually made friends on there. However you decide to deal with your cancer or your loved one’s cancer. Know that Mum and I know EXACTLY how you feel and we hope that you find some comfort from our blog and know you are not alone. AND know that those moments of lightness and laughter are just around the corner.

My People.....introducing Bbud!

Yes, folks it's yet another brilliantly written guest blog , this time from my other"third", Bbud! (I have such clever, literary friends!). In truth I am the last third of the Muskbuds (sorry Budspeak for Musketeers!), because I "tacked" myself on to Fbud and Bbud's friendship relatively recently. They, you see, had already been joined at the hip for many years, since their children were babes in arms.
I met them both at our 3 times weekly (much too early for me) tennis games. WE hit it off immediately, and not just on the court!
Bbud is the social butterfly of the three of us, and was the one to set Muskbudness in motion, by inviting Robert and me to an extra-curricular barbecue in their gorgeous Greek courtyard garden. I'm not sure what was more impressive, some 12 years on.....the great company, the gourmet food, the extensive South African wine collection (for Bbud hails from another paradise, Cape Town!) or...the sparkling ease with which we were made to feel welcome! (Or was that the aperitif of Prosecco with fresh strawberries?)
Anyway, the progression from that evening to full-bodied friendship is all a blur now, because , for as long as I remember,since then we have been  the closest of friends!
Bbud is also our "tourleader", the one who knows where to go for fun,for culture, for more serious matters and never makes a drama out of a crisis! Mostly we just talk, laugh, joke, have fun together, but I know as sure as eggs is eggs, she is and always has been there for me throughout all of this potentially offputting cancer sh*@!
Although her time is limited by running her own business,we get together whenever and wherever we can, because, quite simply we three Muskbuds have the best time together! Lately it's been  all too infrequently and usually pre-treatments, but B-bud, get checking out Athens Time Out, because when this lot of treatments are behind me, we are going to paint the town whatever colour we fancy....and then paint over it!! And can I just take this opportunity to say thank you  for all your love and support!

Here's Bbuds blog, (far too complimentary!)for which I am in her debt forever.........................

Bbud's blog

When you live in a foreign country, friends become of utmost importance and take the place of your far-off family. While there are literally thousands of foreign women living in Athens, meeting an English-speaking one that you like & get on with is not as easy as it seems. Frances and I were already firm friends when Jacqui appeared in the tennis group with her gorgeous blue eyes, happy smile & disarming openness.

The incident Frances described earlier, when Jacqui casually mentioned her ‘small lump’ is forever etched in my memory. Jacqui plunged into the operation & treatments; refusing all offers to accompany her to the hospital, insisting that it was simply a matter of three months & she would be fine. And she was! She is the proof of the power of positive thinking!

With the restriction of working full time, I have played the role of B-bud in supporting Jacqui: back up when Fbud was not available, or driver to doctors in difficult locations. I have also shared in the great times between treatments when Jacqui’s joie de vivre has meant loads of laughs and fun together.

Typically, Jacqui’s reaction to the cancer metastasizing was ‘Sod it!’ and to wear jaunty little neck scarves to cover the marks on her neck & throat from the radiotherapy. Whenever we meet her at the hospital, not only is she not in slipper shuffle mode, but always stylishly dressed & made up. No wonder Papa Doc wants her opinion on his love life!

Only Jacqui could have kept her positive outlook & kick-ass attitude for so long. She has amazed her friends & confounded her doctors. Having accompanied her to some of her doctors’ visits, I can attest first hand that they cannot believe that she has never taken anti-depressants through all the vicious rounds of chemo & terrifying waiting for results that she has endured. Jacqui has not let her illness define her; rather she has defined how to really live with cancer – a good formula even for those without it.

Before you become close to a friend with cancer, you may think you will feel awkward & not know what to say or do. Jacqui has taught me that you only need to be there, in person or at a distance, to listen or do what you can, and simply show you care.

As I write this, I have been playing the three cd compilations of Jacqui’s Favourite Hits that she made for her friends. She has an amazing voice & musical ear (which her famous son has inherited) and thinking of Jacqui immediately brings songs to mind.

So, JBud, just call out my name, and you know where ever I am
I'll come running to see you again. You’ve got a friend. 

My People....Robert! How the better half lives!

Wow! High five, low five and all the other fives!!(??) I am so thrilled and happy that Robert, my better half (his term, not mine!) not only agreed , but actively wanted to contribute to this blog! If you knew what an intensely private person he is (and some do!) you would realise why this is worthy of a round of applause! He deserves my Jacqui Gong for so many reasons, but this task is beyond the call...Also I was so excited to read it because his literary talent goes before him. Add his dry wit to that and..voila..perfect blogging material!
I can't begin to explain how stressful and wearing it must be to live day-in day-out with someone with cancer over a long period of time. Only HE can really tell you what that has been like. We have been to hell and back, but as he says we are in a good place now, despite my illness .He has travelled this uneven path with me and is still at my side and I thank him daily for that. I fell in love with him (instantly) because of his sense of humour (and NOT just because he's 6'3", with boyish good looks and  had excellent prospects!) It's his ability to turn a tragedy into a comedy that has kept me going. He didn't sign up for this but he has risen to the task with a love and kindness that is rare to find, and that makes me feel so proud and privileged that he is My Robert! Here is his version of events:

A Cure for Slippers ?

While reading Jacqui’s vibrant bloggings (sorry tech-speak) and reflecting upon the great bravery (and sheer damn defiance) that she has and continues to throw in the face of this relentless 24/7 experience – my mind is drawn to key moments and feelings that have had a major impact on us as a couple and which have run the gamut of both deep emotion and surprising humour.

Our learning curve (as both wife & husband and patient and carer (carer competence  open to some question here) has been a steep one – but we are in good place, albeit via a route neither of us could have imagined when we first planted our feet on the green fields of Athens back in 1997 (or was that the bit of shrub land at the back of the apartment?). 

It was only a few years in, and we had already retreated from the standard expat city lifestyle, to find some greenery and a bigger garden fit for dogs. Even before Jacqui’s diagnosis, I was already displaying symptoms of early pottering – and we had just rescued our beloved Floyd (a deaf, wonderfully stupid and loving Dogo Argentino) from a petshop window.

We planned a long life in Greece - whose beauty (outside Athens), people and perfect climate had already captivated us.
I therefore recall strongly how strange it was one evening to be sitting on the balcony, enjoying a warm sunny evening and discussing a lump that Jacqui had recently discovered. We had absolutely no idea what was to follow….

Fast forward to a hospital waiting room and I can still see the doctor emerging from Jacqui’s initial operation wearing a resplendently vivid green outfit, without a mark on him. In perfect Greek / German dialect (betraying his years of training), he formally announced that while only one lymph node was malignant - apparently the body’s traffic lights had gone green and all nodes had to be removed to prevent further spread. I hadn’t paid much attention in Biology classes, especially when it came to lymph nodes – but we had agreed in advance that he would do what was necessary. I recall feeling very confused and lonely while Jacqui was still on the operating table.  

It’s also amazing what then goes through your mind. "Hang on a minute – is this a scam to convince us that Jacqui has cancer and for the doctor / hospital to wring as much money as they can out of us and the company medical insurance? " However, faith prevailed and we never sought a second opinion.

X years later – I would now like to bang the drum for conventional wisdom !!

Jacqui is still with me – she has suffered by god, but she is still here fighting. No magical fix yet exists, so her treatment has been reactive but still state-of-the-art from current medical thinking. It could be that a diet of wild berries from the Panamanian rainforest, or bile from the gall bladder of the pygmy sloth, are a panacea for some – but from what I have witnessed Jacqui’s periods of remission have been hard won through true grit and the progression of conventional science.

As Jacqui blogged – the first day of chemo (9/11) will stay with us forever. As the TV screen showed the 2^nd plane hitting the towers, Jacqui was sat there wearing an ice-cold boxer’s helmet and squeezing my hand so tightly she nearly ruptured my knuckles.

I knew then that such a determination to keep her hair, despite the barbaric headwear, would translate into a fierce fight for life! Subsequently we both agreed that the cold-cap was not the way to go and I have in recent years started to get feeling back in my fingers. Sadly though – I will never be able to play the piano again ! Family sing-a-longs, after a long day’s ski-ing are now a thing of the past for us both.

As you may imagine over the years we have become slaves to the Greek hospital system (albeit private) - and like many long-term kidnapees have become somewhat defensive of our captors. In truth, Jacqui is surrounded by a great team of carers at the hospital – and while the need for that in principle is sad, we cannot say enough about the goodwill of the people. So not exactly Stockholm syndrome – but Jacqui freely admits that she draws comfort from the good attention in what has become a second home – bed, satellite tv, ac, private wc & shower, refrigerator, plentiful cupboard space, chicken soup - mashed potato & pork chop (unsalted – I know that as I’ve eaten it quite a few times), and no housework.          
That said - be it private or the national health brown envelope system (fakelaki in local parlance), the system requires a visit to the Accounts office before any glimpse of a bed, a drip or a vivid green gown.
We were a little naïve to say the least when we first bowled up to the registration desk – proudly announcing that we were with BUPA and that Jacqui needed a room.
The look of incomprehension was startling – we could have equally said that I had a Man at C&A card and would that do ?
Many many many visits later, taking advantage of Jacqui’s grasp of Greek and the help of a dear colleague in my office, we have the admissions to Hotel California down to a fine art.

To be honest  - I hate being in hospitals. There can be few greater feelings than to walk out of a hospital on two legs and under your own steam. It is like regeneration, like sleep - you should be able to bottle it!

Bizarrely, the doctor’s office where Jacqui was first treated was located in the Maternity ward. Sitting in the waiting area, I retain these fixed images of ladies of all ages shuffling along the corridors in slippers and pyjamas – and wearing big nappies!  Then moving onto the cancer ward with further shuffling / pyjamas and slippers – I couldn’t help thinking that if I am ever finally consigned to such a corridor promenade, I hope that my mind or the drugs will have already transported me to a beautiful Greek sunset overlooking the sea (and the pampers are undetectable!) .
I do wonder often if I would display a fraction of Jacqui’s bravery in the face of her suffering?  To that end she has boldly resisted the slipper shuffle and very long may that continue !!   

I shouldn’t forget also the politics of the hospital waiting room, another almost surreal take on life for those consigned to seek salvation from their medical messiah.

50 people in a room, many of them possibly dying, and yet they will all be condensed in a fifth of the space around the door to the doctor’s office.
2 important things also to know about our Greek friends at this juncture – no sense of embarrassment and no sense of queuing. This comes as a bit of shock to dear old Brits who are taught at a young age to be self conscious / critical (even when succeeding), and that standing at the back of a queue all day doesn’t matter – as long as you have done the right thing…
Suffice to say, that grand gestures of importance (and pushing) are king in a Greek waiting room – irrespective of health. And being British here will kill you long before the cancer!

And then to great fanfare Papa Doc comes marching in – with all of us yearning for that glance of recognition that will likely beckon us as first in the queue - and undeniably most important. Such recognition is almost as good as a cure.

When finally ushered into the hallowed ground, it always strikes me that despite numerous blood tests, CT scans and pneumatic MRI bombardments that Jacqui has endured – and with a file of 20 plus x-rays, the doctor always manages to flick through these in 10 seconds – then proudly pronouncing that he is “content”.
Admirably, Jacqui will never be fobbed off and the doctor then has to respond to her many questions and a keen self-diagnosis (after many years of personal research borne from self-preservation) that is now bordering on professional knowledge.      
Having endured this cross-questioning, with much relish he then announces that he is thinking of leaving his wife for a younger beauty and would value our opinion -  You couldn’t make something like that up !  
Morals aside and asunder – we still believe strongly in his stewardship of Jacqui’s life over these many years.       

As for my darling wife I can only scratch the surface here in describing the level of inspiration that she has instilled in me in the face of her battle for life. 

I feel it is also time to come out now and say that as a Man I have tried to be a carer – albeit from the closet (or should I say a cave somewhere on Mars).
"In sickness and in health" is an easily repeated phrase during a ceremony, but in those early days I was not pre-prepared to watch & support Jacqui’s suffering with any great empathy, and nor to see aspects of our life together (as we had envisaged it at that time) slowly stripped away.
I read statistics showing that many marriages do in fact fall by the wayside in these circumstances – which is very sad.

I can only say that through a number of trials we have laughed, cried, shouted, screamed and sat in periods of strained silence – most of that coming from me.

We have had to compromise and lose any sense of rage against the disease, but always the over-riding love between us has kept us strong and together.
For the first time, I recently shaved Jacqui’s head (as you do – to stop hair falling all over the bed) and felt a great sense of togetherness. Hard to describe in words and certainly not often seen in a prenuptial agreement.
And she does have a lovely shaped head!   

 As I said from the outset we are now in a good place and while our lifeplans for global navigation and social frivolity have been somewhat curtailed - a coffee in town is as good as a cocktail in paradise if you are with the right person.

In the land of clichés having to cope with cancer (from both sides) certainly helps to focus on what is important and who is most important to you.
The role of the partner is also to keep a sense of grounding when the disease at times takes its grip. I have often said to Jacqui that the day she cannot iron me 5 shirts is the day to really be concerned – and she feels that too.
Actually she doesn’t, and has remarked recently that the iron is getting a bit heavy.
Need to think about a lighter option (note to carers).

Finally, I read recently that progress in breast cancer research is now leaping forwards and we can only hope that Jacqui may benefit. Meantime – we will continue to follow the conventional path and fret about it as little as we can.

As we sit on our terrace overlooking the bay and admiring the sun setting over the water, I glance down and notice that I am wearing Lidl slippers – now that is  worrying……………….  

     

       

Life is a Rollercoaster (Just gotta ride it!)

Don't worry it's not another song, (although, Gemma, if you're up for it THIS one's yours!) No, I just thought I would write an interim blog whilst awaiting my "guest bloggers'" contributions to the "My People Blog"........and, well, I was lying awake last night (Steroid Insomnia..another song....????) after Chemo no. 48 and  felt I owe you a treatment update. (To be frank , it saves me doing a round robin newsletter thing, unless THIS is actually doing that?) Anyway you're getting one, if you read on, which is your choice, of course, no pressure at all...OK?

At the hospital last week, not at the bar, but drinking the aperitif they give you 2 hours before your CT scans!

Yesterday was my 5th session on this particular Merry--go-round, and it struck me that Life/Cancer/ Chemo are all like being on a Rollercoaster! And that then led on to analogies with other fairground rides. (3am this morning, remember). It sounded like a good idea in my head, but lets see what happens as I write it!!)..Still with me? Good children!

It's like this: Life is cyclical like the merry-go-round..birth, school, dating, marriage, kids, getting older,dying... kids getting partners,their own kids, school etc. etc. At some point we have to get off, If we're enjoying it, we choose to go round for as long as we can but eventually the ride, enjoyable as it is, comes to an end. Cancer and chemo can be like this too. Lots of cancers ARE curable and people don't keep going round again, by choice (unlike Life, it is inherently unpleasant, so why WOULD you?), but my particular cancer and the stage I'm at won't let me get off. I don't want to keep getting back on the horse, but I don't have any choice. If I choose to get off its because MY horse is being put out to the fairground carousel horse pasture.
Also, the Big Dipper ride can be like Life..the highs and the oh so lows. Climbing slowly to the highest point, then plummeting the depths at break-neck speed. Going through cancer and chemo is like a speeded-up version of this. You are constantly hoping for the next high, waiting, hoping that the next test results will show improvement, utter euphoria, sometimes for only seconds, when they ARE good, but plummeting down like a lead weight, when they are bad. Let me stress, its only like this after repeated treatments, because at stage 4,  even if everything looks great, the current chemo regime is behind you,  you know that sometime in the next few months whilst you're sitting laughing , strapped in safely in the Rollercoaster car, enjoying the ride with your friends/family, you KNOW that at the top of the bend comes the next terrifying view of the bottom curve of that ride. The thing is though, that you stay on it, because you can't get off. If you tried that mid-ride........!!!!!!!
Now I'm writing this, it seems a little lugubrious (LOVE that word..just wanted to slot that one in!)

But, think about the fairground analogy on other rides...the waltzer (obvious..living fast and loose, youth, fun, fearless spills and thrills, but sometimes you feel sick and you stop. When you're older, you just can't face it any more!). The Crazy House..uneven foundations, dark passages, shakiness! The Horror House.....dark thoughts, nightmares, what's around the next corner?????????BOO!!!!!
The Hall of Mirrors, my personal favourite..can make you feel tall and willowy or short and fat! Unsightly lumps and bumps you didn't know you had. Distorted facial features...thank GOD it's only mirrors and you're really Angelina Jolie or George Clooney. (substitute your favourite sex idol here...I'm not telling you mine, but it's not Anjie!!) So on and on we could go with the fairground analogies, but it's time to tell you why I've been on a horrible Rollercoaster recently and many times wanted to unbuckle and jump off, but obviously I'm not as brave as I think I am!

This latest treatment has been harsh. No side -effects are great and I can't really explain WHY this set are so nasty. It's just that it seems worse than the other 6 regimes I've done since the very beginning. I have aching limbs, feet, hands all the time, like flu. My stomach cramps for the first week continually. I have neuropathy in my hands and feet, pain and numbness, tingling like electric shocks (worst in the 1st ten days of the 3 week cycle). At the beginning it was hard to get more than an hour's sleep, because the aching limbs and the neuropathy(like any pain) are worse at night)......I am exhausted for about 18 days, but even on chemo days have to keep sitting down, walking slowly because I feel so tired and weak......
SO I had a BIG Rollercoaster free-fall on Wednesday, when  I got my Tumour Marker results. After 4 treatments, they had gone up...a lot! This doesn't (hasn't) usually happen(ed) when I'm on a treatment, so I really had a moment there when I was ready to unbuckle and get off the ride. However, it was a MOMENT (a few hours actually), because the Dr.s need to see your CTs as well to decide what to do. I called my lovely female  Oncologist,Dr. S. (My oncologist team will be in my "My People" blog, but not as contributors, as I haven't dared tell them about it!)
I asked her to pick up my CTs which I'd done the previous week. She called me after some time (seemed like being stuck at the top of the Big Wheel for an eternity),but told me the tumours in the liver are STABLE! They call this clinical benefit, which means the drug is holding them at bay for now and thats pretty good to hear! So..upshot is, I'm still on the ride..just gotta ride it ..until THEY tell me to get off. I'm getting used to this treatment and am handling the side-effects with (guess what? ) MORE drugs, , (Eyes Right, the drugs for the drugs drawer!)but I reckon I can stay on the ride for as long as it's doing some good. If it starts to churn things up(more tests will tell)  I'll be getting off, but going on a different ride..Hope it's the Hall Of Mirrors and I can look like my personal favourite celebrity and NOT like Anjelina!!

All for now, back with more guest bloggers soon. By the way, please comment if you have some much cleverer fairground ride analogies ( for instance I missed out Life's temptations..candy-floss and hot dogs!) or want to rewrite the lyrics of that memorable Irish ex-boyband member's song!  I know some people have had problems commenting. I think you have to post a comment with a name (any you like, Anjelina!) and then click on publish???? Worth a try and we'd love to hear more feedback. Is this "helping" anyone?? We hope so!!

 Bye, cup of green tea, then a snooze methinks zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz!

My People.(Introducing my favourite Guest bloggers!)

The last blogpost told something of how Life has been changed by learning to coexist with that gigantic proverbial C-elephant in the room,but now I want to introduce the people (My People!)  who have made it possible. They are the people in my life who have lived "this" and as hard as it has been for me, I  also worry about how they have felt , coped, stayed optimistic through everything!They are few in number, and  of course, we have many other wonderful ,caring friends and family for whom I am eternally grateful , but "My People"deserve a special mention, a Jacqui Gong , if you like, because , after all these years they have not become desensitised or tired of worrying, or already written me off (as some inevitably do and have!).  THEY are my continued, unerring pillars of strength who hold me up when I falter, they are my rocks, upon which I am allowed to founder. They have been by my side (if only figuratively sometimes), for every step of this difficult pathway and have done and would do anything to ease my discomfort along the way. Just as importantly, they know the reverse applies.That's why I'm keeping going,for them, primarily, because I want to continue travelling as far along that road as I can possibly go!
I asked them if they would be prepared to contribute to this blog, and as usual, amazing human-beings that they are, they have stepped up to the plate yet again........for which I thank them , yet again!

FBUD
Fbud is the sort of best mate every girl should have. She is my SSbud (SoulSister!) She was, as she goes on to say in her contribution, which follows, there at the very beginning and has been there for me at every turn since.Her kindness, patience and generosity are boundless.Her sense of fun and humour are infectious.Her hospitality and attentiveness are second to none. She  is tall  and blonde with amazing, slim and toned never-ending pins  (how many Euros did we agree on Fbud?)No, she really is! When she used to come into the hospital on chemo-days, my Oncologist Dr.P couldn't take his eyes off her and her  (amazing,slim etc. etc...)legs and kept asking me about "My friend with those legs"! (But, it's ok, I can live with her tallness and her Top Model/Athlete legs, because she always makes (little) me feel good too!!)We confide everything in each other, enjoy the good times and smile through the bad...We talk for hours on the phone and  in person. We've never had a cross word. I don't know what I'd do without her. She's my Bestbud............Here's her side of the story so far........

Fbud's Frogblog (don't ask!)

In a weird and mystical way,Jacqui's cancer was the matchmaker in our relationship as BestBuds. Don't get me wrong, no way am I handing out plaudits to the Big C - would give anything for Jacqui to be cancer-free and be bestbuds with a  ski-ing, golfing, cossack-dancing northener of just under average height (tee-hee!)  but as Jacqui says ...Carpe Diem- what the... does that mean anyway ?? So, the story unfolds in this way.Its one of those gorgeous sunny days that make you feel privileged to be living in Greece (pre-crisis) .A group (flock,gaggle,stink?) of sweaty female tennis players sit down for coffee and a chat. As I sling my oversized tennis bag on the ground,it tips up, revealing its sordid contents. Hastily shoving back dirty tissues,spare knicks, nibbled twix bar (energy,right?), etc, I spot the business card of my gynaecologist. Having lived in Greece for longer than most of the girls ( see..i was washed up on these shores in a Moses basket!) , I decide to share my local knowledge and ask if anyone wants the name of a good multilingual gynae., totally not expecting Jacqui to say calmly that yes, she probably does need one since she'd just discovered a tiny lump..... FastForward (I know I'm copying you Jbud, but hey,you're the blog expert now !) six years on and Jacqui and I are well-established buddingBestbuds . It turns out we  have plenty in common which doesn't involve hurtling down snowy slopes or putt putt. We've been gym buds, we've shared confidences and references ( a dab of Tippex on photocopies of hers and I'm an Oxford grad- got the job !) , we've been on holidays together ,girls' nights out, drunk a lot and laughed even more. Then, crap of craps, Jacqui finds out that her cancer has metastasised! Radiotherapy,followed by chemo , just for starters and as Jacqui is now living far from the hospital, she comes to stay with me whenever she needs to. This is when we dive into deep Best Buddiness.............. But being Jacqui's best bud is never defined by the Cancer. I selfishly enjoy her company under any circumstances ,and shopping for wigs, lunching before treatments and bleary-eyed breakfasts after treatments are  all part of the fun,however warped that sounds ! Each time we get together ,I'm always blown away by how stylishly gorgeous she is, with or without hair and at her amazing ability to make life more fun for all of us who know her. Jacqui- you're simply the Best!

Life goes on!.........

I know...you are probably wondering why I've started this blogpost off with a photo of the Twin Towers on that fateful day almost 11 years ago??? Well here's a test for you(once a teacher, always a teacher!) , and I bet most people pass with flying colours! WHERE were you at the exact moment the first plane struck the first tower? It's one of those memories you'll never forget! That day is etched in most of our minds for obvious reasons. But what has that got to do with my cancer blog? Only a few of you know the answer to that!They'll get a gold star each for being swats!! The answer is : on 11th September 2001, I was hooked up to an IV in a hospital bed, wearing a "coldcap", receiving my first ever chemotherapy! In the room I was lucky enough to have a TV. Robert was flicking through the Greek channels to find anything worth watching.As he happened on a recognisable American scene, he paused. At first  we thought we were watching a movie..I guess we all did! But it soon became apparent, we were watching the second plane, crashing into the second tower and that it was LIVE coverage!! The rest is history........
I'm starting with this image, because what happened that day was completely devastating the world over. My having just discovered 2 weeks previously, that I had breast cancer, and following surgery, was now embarking on a course of chemo, was no less horrendous for us and our friends and family, but of course there is NO comparison. To me the image is symbolic of how terrible events are happening all over the world, every second of every day, but that there are also people like me with terminal illness fighting for their lives for their  partners, their children, their extended family, their friends every second of that same day. My point is that before, during and after these events Life must go on! I suppose that's why I chose this image, which views the Towers from a distance and has The Statue of Liberty in the foreground.She is the ultimate symbol of Life and the Force that runs through each and every one of us!

Cancer is life-changing. That seems like an unnecessary statement, but until it happens to you or someone you love ,those words have no real significance! I am going to try to explain how it affected me, my husband, my children, my close friends in a way that can only be understood by those who have lived it, day to day or week to week, month to month, but that somehow amongst all the fear and the anger, the frustration , the confusion, let alone the pain and the discomfort of multiple treatments, I/we have managed to maintain our optimism.It may seem to some like a form of denial, but it is a coping mechanism that has worked thus far.Life goes on!

Jacqui

I miss my old life! There, I've said it! I was a party girl!Ask anyone who knows me! I was the first up on the dancefloor, the karaoke AND dancing queen rolled into one! My party piece was a Cossack dance...the real deal!(You know , only one foot on the ground.)Hell, I could do a full lotus !I was physically really strong. I lifted furniture,climbed ladders, painted the house, stripped and varnished chairs and tables. Robert would joke that I could leave the retiling of the roof till later, if I needed a break! I was sporty...I played golf and tennis (not that well,but with oodles of enthusiasm!) , I worked out ,and my most beloved sport was skiing! I can't do any of those things any more. If I did I could break bones and cause myself weeks of pain!It isn't because of getting older, look at what Madonna can still do! It's just too risky now for me! Well ok...the karaoke I could still manage, but Robert has banned that in this house, and anyway,with a professional singer as a son it is considered the height of "cheese"!(Gem, can we go to one of those karaoke booths when I come to London?) To be honest I'm not really feeling the Cossack dance anyway at the moment. Since I feel grotty and fatigued for half of every year I'm just not up to doing those black runs either , even though there is nothing I would love to do more!
Cancer has changed my physical life in innumerable ways and this , in turn, leads to a change in one's philosophy of life. No. I'm NOT who I was even 5 years ago. There is a constant cloud hanging over my baldy head, because even when I'm "on a break" from treatments, I still have the worry of Tumour Marker Tests, CT scans, MRIs, bone scans etc. every month or so. I haven't been away from the hospital for more than 4 weeks in the last 5 years. THAT changes a person!
BUT.......and its a big BUT, I have used everything in my personal strength arsenal to combat the total invasion of cancer in my everyday life. Somehow, I believe ,that Life force I talked about, kicks in, when it's most needed and imbues even the smallest of pleasures with the ability to make me forget that I can't ski or cossack dance any more, but,what the hell.... Carpe Diem.!...I'm still here to write this blog!!!


To be continued.......................................................................

A song for Europe (and the world!!!!!!)

You may have noticed that it's all gone a bit silent on my side of the blogging front? I haven't been living the life of Riley (WHO was he anyway??), no , as you can imagine, haven't really been myself lately due to a certain pesky chemotherapy drug. (Abraxane* for those of you in the same lousy battered old boat as me). Actually, I'm thinking now I would happily change places with Old Riley, since he seems to enjoy such a rollicking good life!!

During my absence, I have kept thinking of blog ideas and they are now backing up. Since Gemma has just posted her detailed, informative, brilliant wig advice blog, and we've done a lot of banging on about hair, I thought it's time for a new topic. A change is as good as a rest, hey? The new blog topic will be about LIFE. The way cancer affects the lives of the sufferer and those close to them, how it has a way of changing people, but that life goes on as it did before, during and (sorry to be morbid..yuk!) after cancer.

(* Will tell you about all the different treatments in a special blog. It's important to know what to expect if you are prescribed any of them. (Apparently I have had them ALL!))


So this little (borrowed) ditty (thanks Macca!) is by way of introduction:

 ...OH blog-di, oh blog-da, LIFE goes on, Oh .....La la la la LIFE goes on!

Gemma's casting plays and films in London Town,
Barney is a singer in a band,
Robert works in shipping, then is homeward bound,
And Jacqui stays at home and does things with her hands!

Oh blog-di, oh blog-da, LIFE goes on, Yeah, La la la la LIFE goes on!

Jacqui's doing chemo now the cancer's back,
Gemma says "Come on, let's write a blog!"
Robert's there each day to keep his wife on track,
And life goes on because she has to feed the dogs!

Oh blog-di  (Etc.)

In a couple of months, Jacqui's feeling almost well,
Her kids will come and they'll all have lots to tell
About their lives...

Soon the summer's here and the barbie's on,
We'll all be having fun around the pool.
We will be so gutted when the kids are gone,
But  know their lives will carry on as on a spool!

Oh blog-di, oh blog-da, life goes on, Yeah!
WE all know lala......Life goes on!!!!

My family!

Hair today...gone tomorrow

So..... I am not doing chemo and I have not got a lovely shiny bald head (but quite frankly wouldn't mind not having to shave my legs every other day....I know the cost would be a little high here, but you know, grass is always greener!)

I do however have a big interest in all things hair / makeup. And I thought perhaps some practical advice about wigs might help some people out there that are doing chemo for the first time and are losing their hair and are terrified/full of drugs/tired/lethargic/overwhelmed (there are more adjectives I could come up with, but I don't want to bore you just yet!) I am obviously drawing on some of my mum's experiences here, but some of my own too.

First thing they don't tell you is that it comes out in clumps (The hair). And it strikes suddenly and when you least expect it, just like a ninja in the night. You wake up and the hair is in your eyes, in your mouth, up your nose....if there's a space to settle in, it will find it! I imagine it's how "Cousin It" from the Addams family would feel ALL the time. You won't believe you even had that much hair in the first place! It might not be quick so you could have patches that are hair free and patches that have long glorious tresses coming from them! I'd advise cutting your hair shorter before these patches start to appear so it's not so traumatic for you when it actually happens.

Mum says to be prepared and make sure you have your wig BEFORE the hair does its great escape. This time round, she shaved her head pretty soon after it started falling out. (By the way, any mother daughters out there should watch this video. It'll make you sob your blooming heart out, but it's beautiful and it reminds you how close the bond is between mums and daughters:
http://www.youtube.com/watch?v=k71yMr5YWjA&feature=youtu.be )

Anyway, you might not be ready for no 1 buzz cut as quickly as my mum because she'd seen herself bald before. If it's the first time you're losing your hair it's not an easy thing to go through, I think it's a huge deal for women and some women feel like their femininity is being taken away, but as you can see in the picture below, my mum looks beautiful and womanly and I think there are practical ways that you can help yourself to feel feminine and attractive without a glorious barnet.

So, back to wigs. I agree with mum about not buying them online. About 90% of the wigs you find online are being modelled by Raquel Welch! It's the most bizarre thing! Now, not only do we not all look like Raquel Welch (and as beautiful as she is, thank god we all don't! How boring would that be?), but some of those wigs (in fact a lot of them) don't even suit her!! I think if you have no other choice, then of course you will have to buy one online, but I would make sure it's as similar to your own hair type and style as possible so you will still feel more like you and it's not even more of a shock!

Having said that, different strokes for different folks! Some people (and i admire them) will use this as an opportunity to experiment with their hair in a way perhaps they never had the guts to before. One day they're Farah Fawcett, the next Jennifer Aniston, the next they're sporting a Demi Moore crop...the possibilities are endless! It can actually be quite good fun trying out different looks! Maybe you were a brunette all your life and you want to try out the theory "Blondes have more fun" (in the moments when you don't feel like you might vomit at any second) Or maybe you've always had curly hair, but longed to see what it would be like to have straight hair! Now's your chance!

When my mum lost her hair 6 years ago, I bought her a few different wigs from a market in Peckham (I was actually really impressed with the range of styles and quality and also prices!) One was black and short, one was reddish and longer and one was blonde and she actually quite enjoyed trying the different looks and seeing herself in a different way (and my brother and I taking the mickey and sporting them ourselves...as in the pic on a previous blog my mum did). Obviously I am not saying this is the most fun she's ever had, and I'm not suggesting you would prefer to have a bald head and try out loads of different wigs instead of having cancer, but I am saying that you can be a little bit light hearted about it. It is possible. And it might make you feel better, which is what this blog is all about.

If you are, however of the school of thinking that you just want to look like "you", I would advise going to a wig shop and actually trying some on. There are so many different types - synthetic hair, real hair, thick, fine, different sizes for different sizes of head, different partings in the hair etc etc. I would try on lots and really get one that you feel comfortable in and one that you thinks suits your colouring and perhaps is very close to your natural / usual hair colour.

A really good starting point if you live in the UK is the Wig Suppliers Association, who work really hard to ensure that the suppliers are providing wigs of great quality and are providing a good service to their customers http://www.hbsa.uk.com/wigs.html 

So the first thing is finding somewhere to buy the wig, the next thing is fitting it. Apparently there are all sorts of different types of cap sizes and ways of adjusting them. Some of them have ear flaps that can make you feel like Biggles if they're too big and if he wig's too big for your head or some make you feel like Martin Clunes if you try to push your hair behind your ears! I'd advise when trying on wigs to adjust, readjust, do all the things you would do with your natural hair and see which wig feels most natural to you. It's never going to feel like your own hair, but it should be comfortable if you're going to wear it all day!

Another thing nobody tells you is that you should go to get a wig cut!!!! You might not be able to find a wig in exactly the same style as your hair naturally was. According to my mum most wigs have way too much hair on them. It just doesn't look natural! Particularly if you're a person like her or me who have fine, silky hair. The best way to ensure you look like you and to ensure you look good and therefore feel good in your wig is to take it to a hairdresser to style it! Amazingly wonderful, unbelievably talented, celebrity and award winning hairdresser Trevor Sorbie (hope he reads this and I get a free hair cut!!) has a wig cutting service at his salons that I believe is free and he's started a charity that is there to help you with selecting wigs, finding somewhere to get your wig cut, what to expect with a wig, in fact, pretty much all the advice you might need is on there...EXCEPT what to name it! (See my mum's last posts)

Here's the web address for My New Hair (Trevor's charity):

http://www.mynewhair.org/Home.aspx

If you haven't got much spare cash, I am told that you can get wigs on the NHS! Here's a link I found that I thought might be helpful:

http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Wigsandfabricsupports.aspx

Here's a couple of recent wigged pics of my beautiful Ma to show that you can get wigs that look and feel right!

More wig tips to come soon!!

Gem xxx