No gloss or glamour just grit and determination

One of the (many) challenges of breast cancer treatment is the extraordinary change that happens to our bodies.  Not just the obvious changes – missing breasts, scars, hair-loss if chemotherapy is part of the treatment regime – but the unexpected changes too. Weight changes, skin changes, fluctuating energy levels, tinnitus, dry nails, altered metabolism, neuropathy. The list goes on.   The physical transformations are accompanied by psychological changes too; stress, anxiety, depression, PTSD.  Even the most relaxed people can find it difficult to stay permanently upbeat when the whole world seems to be caving in around them.

In spite of the sea of pink, in spite of all the hoopla about survival rates*  and in spite of the endless fighting-talk about cancer warriors, battles and survivorship there is no gloss or glamour about breast cancer.  This isn’t a Disney blockbuster complete with pink princesses, an assortment of vertically challenged helpers and a handsome prince who’ll undo the evil spell and save the day.  It’s more like a Hammer House of Horror production.  Zombies – rogue cancer cells resistant to initial medical intervention – might re-establish themselves in a multitude of locations anything up to twenty years after treatment, possibly even longer.

There’s no Disney is this realm.  All we have, all we ever really have is the grit and determination to make it through diagnosis, surgery, chemo and/or radiotherapy into whatever future lies beyond. That future is not the one most of us anticipate.   Regular medical check-ups, long-term side effects, living in a body that no longer feels like your own, mulling over the question no-one can adequately answer…Will it come back?  Gloss and glamour don’t see us through these things. Just as cakes in a French patisserie look so much better than those in my locale, underneath all the icing and decoration they’re not much more than eggs, sugar and flour just like the cakes in my local supermarket.  Gloss and glamour can sometimes help us feel better about ourselves  – when we look good/healthy/almost normal on the outside it allows us to more easily blend in with the rest of society. But it doesn’t take away what’s on the inside – scars, reconstruction (or not), pain (physical, emotional or both) and whispering niggles that pervade the recesses of the mind.

What if some zombies remained…

What if they reawaken…

What if they take control?

French Patisserie, gloss and glamour galore

French Patisserie, gloss and glamour galore

  It seems there is no easy solution. From the point of diagnosis we’re on the cancer conveyor belt.  For some of us cancer is slow-moving and discovered early.  Treatment, whilst challenging, typically doesn’t involve chemotherapy and its long-term implications for health – the risk of cardiac issues or a second malignancy at some point. There’s a very good chance people who discover a slow-moving cancer will go on to lead a long and healthy life.

For others the cancer is more aggressive, fast-moving and difficult to treat.  Higher grade hard-to-treat cancers tend to affect younger women and several of these sub-types have greater propensity to recur.  Many of my blogging friends have these kinds of cancer.  For others still, the cancer has already broken free of its original starting point via lympho-vascular invasion.  Many people are familiar with the concept of cancer spreading via the lymphatic system.  It also spreads via the vascular system – our blood.  Treatment for individuals with metastatic cancer is life long and although its possible to live with metastases for a number of years, the average is a meagre 26 months.  During the life-span of this blog – 7 months – I’ve already mourned the deaths of cancer blog companions.

As Dr Suzanne Herbert stated in the 2011 article ‘A pink ribbon race, years long’ (NY Times)

While the pink-ribbon campaign has raised awareness about breast cancer, it masks a relentless killer.  People like the pretty story with the happy ending…   you always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.

Despite ongoing discussion about the usefulness (or not) or mammograms and the associated potential for over-treatment, the fact remains that our ability to screen cancer is limited and our capacity to predict whose cancer will metastasise is, at present, totally inadequate.  What is clear is that anyone who discovers inflammatory, or high-grade HER2 positive / triple-negative breast cancer will need treatment. These sub-types are not slow-moving and have a much higher propensity to break free of the breast to take up residence in bone or other organs.  Unfortunately hormone sensitive, seemingly small and innocuous cancers can also develop zombie-like characteristics, reawakening years after initial treatment concludes.

For many – possibly the majority – of breast cancer patients the future is by no means certain.  This disease can rear its ugly head again years or even decades later and there is no gloss or glamour when, as Dr Herbert puts it, a relentless killer is in our midst.  25 – 30% of breast cancers go on to become metastatic. Metastases are incurable.  Personally, I’d rather risk over treatment now than take a ‘wait and see’ approach.  In my case wait and see would severely curtail the remaining years I might expect on this planet. Cancer may go on to do that anyway but at least I and my loved ones know I went through treatment, lots of treatment, rather than leaving things entirely to chance.  If I’d relied on the clear mammogram result in December 2011, ignored the small dimple and almost impossible to distinguish mass discovered in May 2012 the chances are that by December last year the cancer would’ve set up home elsewhere.  Just twenty weeks after a clear mammogram, the cancer I discovered had already made its way into the surrounding lympho-vascular system and sat 1mm beneath the skin.

I support the view that women shouldn’t be afraid of their breasts, that confusion exists about the implications of  DCIS and whether or not it will go on to become invasive hence its treatment is open to question. I agree that our current screening methods fall short in far too many instances and the sea of pinkness surrounding breast cancer trivialises a life-changing disease for those who are unlucky enough to be over-treated and for those who are unlucky enough to die irrespective of treatment.

Prevention is better than cure but since we know no means to prevent cancer at this time we are forced to rely on detection, treatment and attempts to cure, no matter how crude those processes may be.  Cure does not equal relative five or ten-year survival in the eyes of anyone with breast cancer and whilst predicted ten-year survival is good, in my view it’s still not good enough.

Relative Survival (%)
1 Year 5 Year 10 Year
Sex 2005-2009 2005-2009 2007*
Female 95.8 85.1 77
*The ten-year survival rates have been predicted for patients diagnosed in 2007 (using the hybrid approach).
Note: Survival for one and five years is for England only and for ten years is for England and Wales  (Cancer Research UK)

The photo below on the left is one of my rare attempts at gloss and glamour – I was never particularly good at it but if an occasion arose I scrubbed-up reasonably well. This was an in-laws wedding, before the spectre of breast cancer entered my life.   The picture on the right was taken yesterday  345 days into life in the shadow of breast cancer. Surgery, reconstruction and six rounds of chemotherapy have all come and gone and I’m still a cancer patient.  Part way through herceptin, awaiting further surgery and possibly facing Tamoxifen for 5 years or more.

The events of the past year mean I rarely contemplate gloss or glamour for any occasion these days. Waking up each morning and reconvening herceptin (currently suspended due to side-effects) is excitement enough.  The cancer patient look – moon face, spartan hair, a tiredness that’s etched deep into my eyes and skin – is also impossible to disguise, irrespective of gloss and glamour.   Grit and determination have long-since become my only mantra.  Without them I doubt I’d have reached this point whilst avoiding a major infringement on my sanity.

sarahs wedding   today p

*Survival has improved for some, for others it could be termed lies, damn lies and statistics.
  • According to statistics from NCI’s Surveillance, Epidemiology, and End Results (SEER) program, the 5-year relative survival for women diagnosed with inflammatory breast cancer during the period from 1988 through 2001 was 34 percent, compared with a 5-year relative survival of up to 87 percent among women diagnosed with other stages of invasive breast cancers.
  • A 2007 study of more than 50,000 women with all stages of breast cancer found that 77% of women with triple-negative breast cancer survived at least 5 years, versus 93% of women with other types of breast cancer. Another study of more than 1,600 women published in 2007 found that women with triple-negative breast cancer had a higher risk of death within 5 years of diagnosis
  • Breast cancer treatments such as Herceptin that target a marker called HER2 have dramatically improved outcomes for women with this type of cancer. But nearly half of these cancers are resistant to Herceptin from the start and almost all of them will eventually become resistant. Research has shown that women with HER2-positive breast cancer have a more aggressive disease, greater likelihood of recurrence, poorer prognosis, and decreased survival compared to women with HER2-negative breast cancer.

Be here for the next world


“We choose our next world through what we learn in this one. Learn nothing, and the next world is the same as this one, all the same limitations and lead weights to overcome.” Richard Bach, Jonathan Livingston Seagull.

I was turned away from the concept of God at a very young age.  An off-hand remark from a member of the church community left me feeling Heaven held no place for me.  The comment was “Animals cannot enter Heaven because they have no souls.”  I was five or six years old and animals were my friends. Whether it was the hawk-moth caterpillar in the garden, the stickleback in the river or my silver tabby kittens, every animal was important to me. In my mind they all deserved a place in Heaven just as much as I did.  If they didn’t go to Heaven, were they automatically consigned to Hell because they were soulless? I didn’t think so.  I wasn’t willing to be parted from my friends so wherever they were going, I was going too even if that meant God wouldn’t be with me.

As I grew up my relationship with nature deepened but my relationship with the church was never rekindled.  I’m neither a staunch atheist or a devout worshipper and I don’t mind if others hold different beliefs to my own. We’re all free to choose what we believe in and there are plenty of things science cannot adequately explain.  For me this gap in plausible explanations creates space for something else, something intangible and more profound.  Faith, curiosity, wonder – it could be all or any of those.

I doubt I am alone in having met someone, a stranger, and yet felt as though I’ve known them for a very long time, longer than was physically possible. Or happened across someone who could almost be a long-lost twin.  These experiences happen, sometimes more than once and there is no simple explanation for them.   It seems it’s more than having a lot in common, similar tastes or shared experiences and there are no logical explanations for these events.  In the absence of rational descriptions, perhaps it’s possible that the most basic explanation is true – we knew these people before, somewhere else in time and space. It’s not a chance meeting, it’s just that we can’t remember much about the previous occasions because our memories don’t have that kind of capacity.  Although this might sound far-fetched consider that not so long ago cell phones, video-conferencing and tricorders were firmly in the sci-fi domain of Star Trek.  Consider also that some people who undergo transplant surgery report experiencing memories that are not their own, recollections from their organ donors life.  This is another phenomenon we are yet to fully understand and possibly never will.

I’m not sure I’ll ever believe in God in the everyday sense but I’m equally unsure that when our corporeal bodies give up, everything else disappears with them.  Maybe it does? Perhaps reincarnation is firmly in the Star Trek domain – who knows?   Either way, I’m sure Richard Bach is right. We choose our next world through what we learn in this one. Our children are the next world. If we learn nothing from those who went before us and pass no new knowledge to our children then sure enough the next world will be the same. It will have the same limitations and lead weights to overcome.  Our world is still struggling with war, inequality, fear and hatred just as it was in my grandfather’s time, my great grandfather’s time and my great-great grandfather’s time. What have we learnt?

I’m fairly certain that when its my turn to move on I’ll go to wherever my animal friends are; I’ll be there with the caterpillars, sticklebacks and cats. Until then I very much hope  I’ll take on board some lessons and have the good sense to share them with my son.   If I can be here for the next world there’s a chance his children and grandchildren may finally cast off the limitations and lead weights that constrain the world today.

B4Peace: How do we raise children to be peaceful?

Gift of Peace

Gift of Peace (Photo credit: YardSale)

This post is in response to April’s Monthly Peace Challenge which has a focus on children and peace.  Thanks for a thought-provoking topic Kozo.

When our children are young (and even when they aren’t so young) our natural instinct is to protect them, keep them from harm and shelter them from some of life’s harsher realities.  Like many other parents I didn’t want my son being exposed to violence, abusive language or torrid images when he was very young.  I don’t want him being exposed to those things today either but I know there’s little hope of preventing it. He, like me, watches and reads the news, walks down the street and drives a car.  He can now see for himself how delicate a flower peace is and I am pleased that he has grown into a peaceable young man.

So what made him grow up valuing peace more than war and humour more than aggression? I think it was a combination of things.

Before my son was born I read that the experience a developing baby has inside the womb can influence their character and demeanour after birth. To me that made a lot of sense.  Every emotion I felt whilst pregnant was transmitted if not physically then chemically to my unborn son. I made it my mission to remain calm and happy throughout the whole pregnancy and birth experience.  My son was a very calm and happy baby.

Throughout my son’s childhood there was always lots of love for him coupled with plenty of encouragement and understanding.  More smiles than frowns and more laughter than tears. From a very early age I taught him to value nature and respect all living things (this is a lesson my parents taught me).   I believe that if we teach our children to value the planet we live on and the flora and fauna that inhabit it they are more likely to think about the consequences of their actions.  Those thoughts, the realisation that actions have consequences some of which are desirable and some of which are not, help us maintain balance, harmony, peace and equilibrium in the grand system that we’re all a part of.

As he grew older I taught my son about some of the harsher realities of life. We visited the WWII cemeteries in France, we discussed the reason for Remembrance and why people wear poppies.  We talked about people whose behaviour is markedly different through no fault of their own, the sociopath and psychopath who do not relate to the world in the same way we do and thus do not live by the same rules.  We also talked about everyday people, people like us who have a range of emotions along with the capacity to master them, to avoid anger, hatred and spite.   I never promised mastering one’s emotions would be easy but I was clear our reactions to any situation are our choice, not anyone else’s doing.  Easy to say, not always easy to remember so regular practice is required.

My son has become a compassionate and calm young man. Trouble is something he steps away from.  I wondered for a very long time whether I had done the right thing – should I have taught him to have more fight, more bravado?  Our youngsters get beaten-up, stabbed and shot in the streets because some people choose rage and hostility over peace and the sanctity of life.   I pondered on these thoughts for a long while and concluded that teaching aggression, disrespect and violence only breeds more of those things making our world a turbulent, unhappy and dangerous place.

Only time will tell but I think I did the right thing.  Teaching love, peace, respect and dignity offers at least some hope that future generations may be more tolerant, more placid and more peaceful than those who went before.


Guest Post: Susan Vento – Asbestos Cancer Victims Rights Campaign

Susan recently approached me about writing a guest post regarding the FACT Act and the Asbestos Cancer Victims Rights Campaign.  I am happy to help support Susan in raising awareness of these important issues following the untimely death of her husband Bruce from mesothelioma.  Please take a few minutes to read her story and join the campaign.

My name is Susan Vento, and I am writing to you about a cause that is very close to my heart. On October 10th 2000 my husband, Bruce Vento, passed away. He was serving as a congressman for the state of Minnesota when he was diagnosed with pleural mesothelioma, a very rare cancer that is caused by asbestos exposure and kills 90-95% of its victims. Please read my post below to learn more about my personal story.

I Support Victims’ Rights: My Family’s Fight Against Cancer & Unfair Legislation

It was on a Saturday––January 29th, 2000 to be exact––that mesothelioma entered our lives. “Asbestos,” they told us, the name of the killer that would eventually take my husband’s life nine months later.

Like any story, I would like to start at the beginning because only then can you understand the meaning of the ending. My husband, Bruce, grew up on St. Paul’s East Side, the second of eight children in a second generation Italian-German family. He attended the University of Wisconsin-River Falls, working construction to put himself through college. He then went on to teach junior-high science in the Minneapolis Public School system and later was elected to the Minnesota House of Representatives in 1970, representing East Side St. Paul families. In 1976, he was elected to the U.S. House of Representatives from Minnesota’s Fourth Congressional District, where he served his constituents in the Fourth District up until his death, just barely 60.

He and I first met while Bruce was lobbying in Washington D.C. in 1980. Four years later, I started doing volunteer work in support of his re-election campaigns. Like Bruce, I was an educator, and I believed in his impact. He supported working men and women, our public schools, and those who are poor and homeless, those who do not typically have a voice in the political process. Little did I know that our love story would start in those campaign rooms, working together for a future we both believed in.

Our first date wasn’t until mid-April of 1995, where he took me out to a comedy club. I was 40 at the time, and hadn’t been dating much because I was more focused on work than anything personal in my life. It sparked the start of my life’s great love, one that I thought would last a lifetime.

In early January of 2000, Bruce left on a Congressional trip to Europe. Each night he called to check in, he kept talking about a shortness of breath and lower back pain. The morning after he returned to Washington, D.C., he went to the House physician, who immediately had him go to the hospital nearby.  They drew a significant amount of fluid from Bruce’s lung for testing.  The following afternoon, he received the call: he had lung cancer. I met him at the airport here in the Twin Cities that night, and we spent the weekend having the conversations you have when you’ve received news like this.  Bruce and I had his sons and their spouses over to share the news with them, and then we went to tell his parents––a most difficult conversation.

The following week, we went to the Mayo Clinic in Rochester, MN. After testing, Bruce’s doctor shared with us that he had mesothelioma. It was caused by asbestos exposure, which happened during Bruce’s construction work back in college. We had never heard of this disease let alone knew how to spell it. While the doctors took Bruce for additional tests, I spent a couple of hours in the hospital library, desperately searching for any kind of information I could find on this vicious cancer. Little was available at the time, so I came up with less information than I had hoped.

It was on Valentines Day that the surgeons removed Bruce’s lung, half of his diaphragm, and lymph nodes. When the toxicology reports came back, we found out that the cancer had spread to his lymph nodes. In April, he began several rounds of chemotherapy, followed by five weeks of radiation. All the while, Bruce continued serving his people from Washington. He never stopped fighting for that cause, that same vision that brought us together.

Since Bruce’s death, I have been a part of several efforts both in Washington as well as here in Minnesota to advocate for patients and their families. Too often, the corporate interests hold court and control the outcomes on much of the legislation being enacted, especially when it comes to issues like asbestos and mesothelioma. The opportunity to share Bruce’s story has been both healing and empowering. So many only know the word “mesothelioma” from the late-night cable advertisements and have not yet experienced it in their own lives.

I’ve met so many patients and families and have learned so much from their experiences. The “small world” connections have been stunning––Bruce’s nurse during his radiation was diagnosed with mesothelioma after his death and later died. My former teaching partner’s father died of mesothelioma, as did a former staff member from my elementary school.  The candidate who challenged Bruce in his last three, successful re-election bids for the U.S. House was diagnosed following Bruce’s death and died a few months after.

I’m doing this to honor Bruce’s legacy as well as to do what I can to help other patients and families protect their legal and constitutional rights. The Asbestos Cancer Victims’ Rights Campaign (ACVRC) is committed to providing a voice for patients and their families as Congress debates and makes decisions regarding legislation that would seriously erode our rights. While awareness and information surrounding mesothelioma has improved in the last thirteen years, we need to continue raising our voices. Starting with signing our petition, I encourage you to join our effort in whatever way you can.  With your help, we can take a stand. Together, we can work towards building a better tomorrow and truly make a lasting difference.


There is something YOU can do to help. Recently, asbestos companies have been using their political influence to introduce a new bill. It is called the “Furthering Asbestos Claim Transparency Act” (FACT Act), and it will delay, and in some cases, deny justice and badly needed compensation to people suffering from asbestos-related diseases. I am a spokesperson for the Asbestos Cancer Victims’ Rights Campaign ( The ACVRC is a national campaign dedicated to protecting the rights of cancer victims and their families.  I hope that you will join our fight to defeat this unfair legislation. Here are a couple of simple steps you can take to make a difference:

1.    Sign the petition to stop legislation that threatens cancer victims!

Go to and follow the instructions to sign the petition at the bottom of the page.

2.    Spread the word!

Share your thoughts on our cause and the protection of cancer victims’ rights with your blog audience. Place a link to our petition on your blog to allow your readers to sign and showcase their public support – every signature matters!
Thank you so much! Together we can truly make a difference!


Herceptin and me: potential miracle medicines come at a cost

I have no doubt Herceptin is a potential miracle medicine for people like me who are diagnosed with HER2 positive breast cancer.  I can still remember my Consultant telling me how lucky I was that it had recently been approved for early stage breast cancer in the UK. She told me without it our conversation would’ve been quite different; without it she’d have said she was sorry because although she’d do her very best, it was unlikely anything she could offer would prevent the cancer coming back.  When cancer returns (metastases) somewhere other than where it started every day is a bonus. Although metastatic cancer can be kept at bay for months, possibly years,  it cannot be stopped.  The majority of cancer deaths are caused by metastases.  Few things scare me, metastases is one of them.

Like many other people prior to diagnosis I assumed (wrongly) that breast cancer is one disease.  Since being diagnosed I’ve read, researched and discovered just how complex an adversary it is, the role tumour suppressor genes play, the different survival rates for triple negative, HER2 positive and ER/PR positive subtypes and the further complexity of signalling pathways, gene over-expression, enzymes and timing of surgery.  When I first researched HER2 positive breast cancer the information I found was depressing to say the least.  Then I discovered further information about the use of anthracycline based chemotherapy in conjunction with Herceptin and the survival benefits of third generation chemo regimes.  Things looked brighter.

Last Friday I was due to have my seventh Herceptin infusion.  Herceptin infusions are less challenging than chemotherapy but in my case it seems I’m still prone to some of the rarer side effects.  A medical trial in more ways than one the Trials Nurse joked with me.  For several weeks I’ve experienced pain and stiffness in my joints. It began in the third and fourth fingers of my right hand. One day everything was fine, the next I couldn’t bend my fingers without a fair degree of discomfort.  Initially I dismissed it thinking I must have slept awkwardly and squashed my hand during the night.  The swelling, stiffness and discomfort didn’t subside.

Over the past eight weeks joint problems began to affect the fingers and thumbs of both hands, my wrists, ankles, knees and hips.  When I went to the chemo unit last Friday and showed them my fingers they called the Head of Oncology in Worcester, Herceptin was suspended and I was referred back to my Oncologist today.  Rarely can I go to hospital these days without someone wanting me to remove my clothes.  Monday 15th April was no different.  If it wasn’t so cold and wet in this country I’d consider naturism because some stranger has looked/poked at my body at least once a fortnight for the past year.  Continuing to waste money on clothing is almost futile… I have no modesty left to preserve!

After a thorough examination the Oncologist, Miss P, said I was unfortunate to be suffering these side effects and Herceptin is the prime suspect. I hadn’t met Miss P before but I immediately warmed to her, she was honest, straightforward and empathetic.  She admitted she has rarely seen such badly swollen knees or hands and it seems I’m one of only two women in our Health Authority area suffering from this level of adverse reaction to Herceptin.  As a result H and I are having a trial separation for the next three weeks; infusion seven will be delayed by at least a month.

Miss P’s aim is to reduce the inflammation in my joints so that we can complete the remaining Herceptin treatments. I want to continue. I also want to be able to use  my hands, walk and stand/sit without pain (or looking and feeling like I’m well over the age of 99 / related to the Tin Man from the Wizard of Oz).  To assist in this plan I have a new daily drug cocktail and new activity regime.


Diclofenac is a non-steroidal anti-inflammatory. Miss P hopes three a day coupled with four doses of paracetamol, being more cautious about the amount of activity I undertake and keeping my feet up as much as possible will help reduce the fluid that has accumulated in my joints.  Reducing activity is frustrating – keeping active is supposed to be a good thing, it has survival benefits.  Irrespective of that, being cooped up again might well drive me insane.   Please God, who or wherever you are, take care of my mental health but most of all take care of my liver during the next 21 days because its going to get another hammering and has already endured much, much more than either of us bargained for.

The good news is that I now know the extra 9.5kg I gained in 3 months is all fluid, primarily retained around/in my joints and various soft tissues. The not so good news is that if the drug cocktail fails I’ll be referred to an orthopaedic surgeon with a view to draining the joints. I refuse to countenance an orthopaedic referral because 1. I’m not over 80 and 2. I’m not having more sharp implements stuck into me, especially into my joints.  The associative fear of needles I developed over the past 6 months would be pushed to a new level and its barely manageable as it is.

I’ve never seen so many packs of pills and this will be the first and last time. Drugs, do your thing and free me from this infernal inflammation.

2013 brings… blogging awards

Its time for me to say thank you to some fellow bloggers.  2013 might be proving to be a pain in the a*** for me personally but I’m grateful for these nominations and glad folks continue to enjoy my ramblings even when I’ve been less upbeat than usual.

Firstly Ajaytao – I bow and thank you for the Most Influential Blogger Award.  Ajaytao has an amazing blog of photographs, phrases, sayings and pearls of wisdom.  Go take a look, you won’t be disappointed.


Next Shaun  at Praying for one day for the Tag You’re It award.  This reminds me of playing tag in the school playground… it was a long time ago!!  Shaun has some health challenges too, he blogs about it alongside other interesting articles and observations. Go visit him.


Also thanks to Seeker for a Very Inspiring Blogger award. Seeker has a great blog and is  part of bloggers for peace. Stop by and visit for some thought-provoking posts.


And to Cristi for the Liebster blog award.  Simple. Interesting  is entertaining, interesting and informative.  Definitely worth visiting because you’ll find a wealth of information and lovely pictures there.  Thanks for this award Cristi 🙂


I’ve said before that I’m not always good at following rules and if I were to rigidly follow the rules for all these awards I’d end up answering questions, posing questions and making award nominations to fellow bloggers for the rest of this month. I’d love to do that but I don’t have the time right now because…

I had a hiccup with my herceptin treatment on Friday and now have to go back to see Dr C the oncologist tomorrow to decide what to do about the issues I’m experiencing.  I’ll write about all that jazz separately but it means I’m bending the rules a bit and taking a different approach with these awards.

I nominate the folks below for blogging awards and they can choose all or any of the above for their blogs if they wish to do so because they’re certainly worthy of recognition  I appreciate their writing, photography and insights very much.  Well done to you all and I hope you’ll enjoy an award or two (or even all four 🙂 )

Bite Size Canada

Living with ADHD

1Earth United

Not Down or Out

Cancer will be my bitch


Pondering Spawned

Tracie Louise Photography

The Great American Landscape

Not all about cats

Just a Brit with a camera

Diana Gray Author

Purple Rays






The Knights of Clerkenwell

In the olden days well before all our times knights-errant and the chivalric code played a significant role in certain aspects of society. Brave and dutiful, honourable and noble, just and true those who became knights lived to protect and serve members of society who needed their help.

 From time to time we can all use a little help. Sometimes its forthcoming, sometimes it isn’t and when it does materialise it can come from unexpected places in unusual shapes and forms. I’ve just experienced unforeseen help in the form of friends who I’ll call the Knights of Clerkenwell.  I can say hand on heart that noble goodness runs through them sure as blood runs through veins yet the Clerkenwell Knight was unexpected. I, like many other people, thought the days of chivalry had long since been consigned to the land of myths and legends.  I work in London; walking around Oxford Street or trying to catch the Central Line during rush hour quickly demonstrates what an insular, every (wo)man for themselves society we’ve become but fortunately it seems I was wrong. Knights are not extinct, they’re just rather a rare find these days.

Being found and helped by a modern-day knight came as a surprise, a pleasant one too which was most welcome given my start to 2013 changed from full of renewed hope to wondering just how much more crap I’d be able to survive.  Like people, help can also come in many guises. The knight and I expected something structured, tangible and straightforward. What we found was rather rambling and intangible, possibly not as helpful as we’d hoped.

We talked about it over a very large cup of tea as is the way of knights and ladies. For the record I’m not a proper lady and that’s probably how I ended up working in IT instead of being a beautician. Once a tomboy always a tomboy and if my joints weren’t so damned painful and swollen I’d still spend my weekends climbing trees and making dens.  After detaining the knight from a number of other important matters for far longer than expected I bid him adieu and reflected on happier occasions when our paths had crossed; times when life’s complexities were as easy as uncovering the modus operandi of credit card fraud gangs, defeating corporate blackmailers and managing firewall rules. It’s true our lives have involved high-order geekery and socio-technological mischief-makers for many years but they’ve also entailed professional respect, successful businesses and a few too many beers once in a while.  Working in IT is strange like that.

 For the past few weeks my insomnia has returned with a vengeance proving tiring and far from useful.  Having an extra 7 hours to mull over my conversation with the knight put those additional waking hours to work. Help had not been found exactly as expected but a conversation over tea suddenly held most of the answers. There is a way forward, I bow deeply to the knight and say a heartfelt thank you because things look brighter than they did before we met.

Those who know me know I’m a Muse fan. I’m taking my son to see them at the Emirates Stadium next month and we’re both looking forward to it. By then I might even have enough hair to pass myself off as an uber-trendy festival-going pseudo-punk.   I ripped off one of Muse’s song titles in this post. Sorry about that guys but somehow it seemed fitting so just in case you’re wondering, here’s the original version…

Knights of Cydonia – Muse

Come ride with me

Through the veins of history

I’ll show you how god

Falls asleep on the job



And how can we win

When fools can be kings

Don’t waste your time

Or time will waste you


No one’s gonna take me alive

The time has come to make things right

You and I must fight for our rights

You and I must fight to survive

A simple poem: devious plans


Storm (Photo credit: Moyan_Brenn)

She walks by the river

Slowly she treads

Scarf round her neck

Hat on her head

Just a slither of light

Falls down on her face

With eyes cast low

She picks up her pace

Storm clouds now gather

A bitter rain falls

Alone in a nightmare

No justice, no laws

The twenty first century

Held such hope

But now there is nothing

To keep her afloat

She smiles at a stranger

Who hurries right by

This child from a manger

Condemned to die

Loved ones will mourn her

Tears will be shed

Those without honour

Brought forth her sad death

Her blood on their hands

Yet they show no remorse

Their deviant plans

Drowned out her life force

I want change

December 31st is usually the time we think about resolutions, things we want to do or changes we want to make for the future but April 3rd also seems as good a time as any.  After 321 days of breast cancer, 130 days undergoing various treatments (to date, medical interventions aren’t finished yet),  277 days of stress and worry as to how I’d provide for my dependants during and after treatment (to date, livelihood interventions aren’t finished yet either), some of the people I considered friends abandoning me and my family being thrown into crisis that will leave everyone with scars I want change.

I live in a so-called modern first-world country, part of the Western wonderlands where breaches of human rights, homelessness, poverty, discrimination, malnutrition and persecution are all supposed to be so frightfully awful that they couldn’t possibly happen here.  l live in a country that shakes its head and tut-tuts at China, Syria and Pakistan. My country needs to learn the saying “people who live in glass houses ought not to throw stones.”

While I was in Bristol last week I saw more homeless people than I’d seen since the 1980’s. These were not the New Age Traveller kind of nomadic homeless, they were people in late middle age, of pensionable age or older. Several of them were older women carrying everything they owned in a bin liner and a few Tesco carriers that had also seen better days. One of the women was almost blind – cataracts she said – as the assistant in the coffee stall sorted through a small collection of copper coins that wasn’t enough to buy the coffee. She gave it to the old, blind woman anyway with a smile that asked ‘how did this happen to you?’  I was pleased to witness some human compassion at an individual level because the temperature that evening was -3c by 7pm with windchill taking it down to -8c. Afterwards I wondered if the coffee cart girl would be in trouble with her boss for her small act of kindness or if she’d make up the shortfall in takings from her own purse. I suspect the latter. People cannot afford to be out of work in the current climate since even those who have paid into the system for most if their adult lives receive little or nothing in return when hard times befall them.  Being out of work and out of luck is the most likely reason I saw so many older homeless people last Thursday evening.

Whenever there’s a recession and unemployment figures rise the behaviour of employers changes too. A friend of mine was made redundant at the end of last year. He’s a bright guy with plenty of high-tech experience to offer and a young family to support. Although he’s attended several interviews, he told me the process for every vacancy is long and drawn out. The time from application to interview can be months rather than weeks and companies are asking candidates to attend upwards of five interviews with different people over anything up to three months before responding to say they’ve changed their mind and won’t be taking the vacancy forward at this time. Another friend of mine was made redundant 2 years ago, she too is bright and well skilled. After a year searching for work she took up a contract post but that too is now coming to an end. She fears the market is in a worse position today than it was when she took up her contract and with no other source of income she isn’t sure how she’ll continue to pay her mortgage.

As a breast cancer patient it seems I’m expected to take care of myself, (there has been very little support outside the standard medical activity), continue to provide for my dependants including my teenaged son whose student loan falls more than £2k short of his accommodation costs let alone providing any money for his food, transport, books, etc., pay all my bills on time and in full, remain positive about the future (because being anything other than positive is bad when you have cancer) and remain hopeful that everything will be alright in the end.

Normally I’m positive, I seem to be wired up that way however there are some very cold and harsh realities of being a cancer patient in my modern first-world country in 2013 as follows:

  • there is significantly limited / no help available whether that’s psychological support, help with normal household activities (eg gardening, cleaning), getting to and from hospital appointments, etc.
  • the best drugs aren’t made available until you’ve suffered the worst side effects because they’re too expensive to provide upfront
  • employers attitudes to people with cancer vary greatly and it’s not just small companies who treat people disgracefully. A cancer patient has as much chance of securing alternative employment as a snowflake in hell.
  • having cancer is expensive. There are items cancer patients need to buy to take care of themselves and they cost money. Eating healthily, plenty of fresh fruit, vegetables and avoiding junk/processed food is more expensive than eating supermarket ready meals.
  • the need for psychological and emotional support isn’t just the domain of the patient, their family also need support and it is rarely if ever forthcoming.

I want change. Not just for cancer patients but for everyone who has paid into the system and appears to get nothing in return. I want to see the elder folk of my country with roofs over their heads, warms beds and food in their stomachs, not living rough on the streets. I want future generations of cancer patients to be given the best drugs without having to suffer hideous side effects first because the drugs are too expensive so patients are treated like guinea pigs. I want employers to act responsibly and with some degree of integrity – remember cancer, diabetes, heart disease and stroke can strike anyone,  you could be next so consider how you might like to be treated before trampling all over today’s patients. I want professional psychological and emotional support to be available to people and their families for a nominal cost – not £40 – £60 per session as it stands today and I want supermarkets to consider their role in promoting a healthier society, one that will live longer and thus contribute to their profits for longer, by making healthy foods available without scandalous levels of mark-up. Start working with local farmers and you’ll help the national economy as well as reducing your air freight costs and offering fresher produce in store.

Already I can hear the politicians screaming “but these are difficult times, the country cannot afford all this.” And to that I say bollocks. We spend c.£39bn on defence plus c.£11.5bn on international aid, £54bn on local and national government (excluding budgets devolved to Scotland, Wales and Northern Ireland).  That’s over £100bn…. I don’t think we’re getting value for money when my elders sleep rough on the streets, my fellow patients are suffering physically and psychologically and our disabled folks are quite literally disabled from cradle to grave in education, the workplace and the benefits system.

I want change.