Scunnered

Sometimes we can take on a sense of weariness, of being jaded. Of tiredness. Sometimes it goes a bit deeper. World weary, downtrodden and bereft of that lust for life. Usually it is fleeting or at least transient.  Sometimes it takes a greater grip.  We have a great Scottish expression for that feeling – we say we are scunnered.

I have been scunnered this week.  Physical tiredness plays a part but only a small part. The rest is a great deal more profound.

Back in November last year my grandson, David had his head shaved to raise awareness and funds  for Gammadelta T-cell lymphoma, a rare and aggressive form of blood cancer. It was an enormously generous act and it was prompted to show support to a pupil at his school who had just been diagnosed.  Yes, a pupil at his school. Jak Trueman, a boy aged 15 years old. It was cruel enough that my grandchildren were confronted with cancer in their grandparent, but to be plunged into the harsh reality of cancer in a peer at such a tender age is truly cruel.

headshave for Jak

David – before and after his headshave

Jak’s story or journey has been well documented and shared since his diagnosis, thanks especially to a wide support network and of course social media.

jak trueman

Following chemotherapy, Jak was preparing for a stem cell transplant late in January when the preparatory bloodwork threw up some concerning results.  Subsequent scans showed that the disease had progressed into his organs and bones and it was clear that his time was limited when his family shared the devastating news on 24 January.

In the following days, there was a flurry of activity, realising many of Jak’s wishes and dreams but also using the gathering attention to raise awareness and funds.  I will not go into detail as that is well documented online in numerous places, including his Facebook page.

I woke in Yangon on Tuesday morning to a Facebook feed filled with news updates relating to Jak.  I didn’t need to open those links to know that this could only mean one thing, Jak had died only days after learning of the spread of the disease.

He leaves an incredible legacy for one so young, yet enormously mature and generous.  He  leaves a family, school and community, united in grief and coming to terms with the privilege and grief of knowing such an incredible young man.  At the same time, galvanised and inspired to fulfil a series of plans which he had been shaping in his final days. The fundraising towards research into Gammadelta T-cell lymphoma has had a major boost as has awareness into childhood and blood cancers.  He leaves a phenomenal legacy in his name and memory.  Jak, his family and supporters (Team Jak) developed the concept of “Jak’s Den” which will be a space incorporating a number of features:

  • Counselling/quiet rooms and fully qualified counsellors for siblings/ families and any other child/ teen requiring counselling
  • A LOUD room for anyone wanting to go in if they want to make some noise
  • A cafe for cancer sufferers and neutropenic folks who can’t eat out in public for fear of infection – this  will be sterile and all freshly cooked food as this was a huge loss for Jak he couldn’t get out or easily socialise
  • An outdoor area with space for sports and games
  • A music sensory area
  • halls for singing dance and drama, connected with Jaks’ family business, which will also provide a space for sports parties and indoor kids football.

This is personal.  Both of my grandchildren were in the school band with him, and in particular my grandson, David really looked up to him.  David was proud to shave his head and show support.  We know how important image is to young people and a head shave at that age is a big deal.

The morning after Jak’s death, pupils at school wore gold ties or hairbands to remember Jak. My daughter had a crack of dawn run to the shops to find a gold tie for David. An extraordinary movement has been kindled from the grief and loss of one of their friends.

Only one day later, we were reminded that World Cancer Day was again upon us. And that is when I realised just how scunnered I was with cancer.

inya lake sunsetAs the sun sets, so too does it rise.  I am fortunate in that whilst I have that all pervading feeling of being scunnered, I am confident that it will pass and that the new day will help to lift the spirits. I am even more fortunate that through my grandchildren I have a connection, albeit tenuous, with an extraordinary young person who shone a light into a very dark space and leaves pride and inspiration alongside grief.

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World Cancer Day – debunk those myths!

These” World Days” more often than not, catch me by surprise.  Surely it is only a few weeks ago since it was World Cancer Day?  Apparently not. Today, Februay 4 is indeed World Cancer Day.

The World Cancer Day website tells us:

World Cancer Day 2014 (4 February 2014) will build on the success of last year’s campaign, by again focusing on Target 5 of the World Cancer Declaration: Reduce stigma and dispel myths about cancer, under the tagline “Debunk the myths”.

World Cancer Day is a chance to raise our collective voices in the name of improving general knowledge around cancer and dismissing misconceptions about the disease. From a global level, we are focusing our messaging on the four myths above. In addition to being in-line with our global advocacy goals, these overarching myths leave a lot of flexibility for members, partners and supporters to adapt and expand on for their own needs.

If we are going to focus on myths around cancer I am not sure where I would start.  So I am opting for quick and easy.  And consistent.  Living in this part of the world it is critical to be able to share accurate information. Beliefs and traditions are deeply held and must be respected while attempting to debunk myths surround cancer.

I have therefore chosen to highlight some of the points from an earlier post, which looks at inequity and the challenges of cancer in a developing context. In this post I noted that:

I have a particular perspective on breast cancer, awareness and equity from my place on the planet. I see and hear, and try to understand, the significant different levels of awareness and the very different concerns which people have in my part of the world. I struggle with the fact that I had access to excellent care and treatment and a reasonable level of understanding of breast cancer yet a woman I might sit next to in the course of my life and work here has a very different level of awareness, considerable traditional taboos and for whom access to care and treatment is not easy. The discussions in the wider blogosphere are relevant and critical. But they often do not have relevance from where I am standing……..

……Our cultural reference points bring differing levels of understanding wherever we are. I quickly learned that it was even more complex and subtle here than I had imagined. Many people were hesitant or uncomfortable to talk openly about their cancer, or even to be identified as having been diagnosed. Gentle conversations gradually helped us, outsiders, to understand that there is a significant stigma associated with cancer. Belief grounded in karma means that a cancer diagnosis seems to bring with it a judgement that this is a punishment for a wrongdoing either earlier in this life or a previous one. There also are important issues over privacy and sharing private information

Fans with message in Myanmar

My plea on this World Cancer Day, is that we take a step back and reflect on those inequities, and acknowledge the very different places we all stand.  Those myths vary according to where we are and there are many unspoken, little-known myths which we must first understand.