Wednesday, 30 April 2008

The Lavender Trust -- ten years old

Tomorrow is the tenth anniversary of the Lavender Trust, the charity I set up after my sister Ruth died of breast cancer at the age of 33. It's also her birthday -- hence the date we chose for the launch of the charity -- and had she lived, she would have been 44 tomorrow. I'm feeling such a mixture of different emotions right now. Part of me is in an organisational frenzy, because there's a huge fundraising event taking place tomorrow night, upon which a great deal depends (the Lavender Trust raises all the money for Breast Cancer Care's services for women under the age of 50 -- and 8,600 new cases are diagnosed each year).
But now I've just stopped for a few minutes -- stopped running through the lists for tomorrow night, stopped sending emails, stopped fretting about who is coming, and how much is being donated -- and I'm thinking of my sister. I miss her so much; I wish so much that she was still alive -- still my best friend; still the person I could turn to on dark days, and to celebrate all the good things in life, too... Of course, time heals -- that old adage, often repeated to the newly bereaved -- and I am healed, in that I no longer feel as if part of me has been severed and lost forever. But you don't stop loving someone, just because they have died. You can't turn off love, and make it go away, however many years have passed since the one you loved was still alive.
And that's a kind of miracle, isn't it? That love survives the passing of time, and does not fade, even as we grow older, and more faded. It's like a kind of springtime; the capacity of love to renew itself, with the changing of the seasons, and the turning of the years.
Thus Mayday will always be Ruth's birthday, in my heart.


dovegreyreader said...

Justine, the date really hadn't registered with me so my blog today on the eve of Ruth's birthday is pure serendipity. I hope the event goes well and the money flows in for The Lavender Trust, I suspect Ruth would have been immensely proud and had something very droll to say too!

Kerry said...

What a sister you are, keeping her memory alive in such extraordinary ways. Happy May to you.

crimeficreader said...

Reading this post brought tears to my eyes.
I read Before I Say Goodbye, aware of the issues and with no anticipation that my best friend would also join the statistics for young women dying as a result of breast cancer a few years later. When Ann was diagnosed, she was told they'd had more diagnoses in January alone of that year for her age group, than they'd had in the whole of the previous year. Sadly, it was her "aftercare" that stank. No tests, just a "and how are you feeling?" approach. By the time she'd had a cough for a month, things were not looking good.

You say:
"I miss her so much; I wish so much that she was still alive -- still my best friend; still the person I could turn to on dark days, and to celebrate all the good things in life, too..."
I feel like that about Ann too; having no siblings friends have always been important to me.

Like dgr, I think that Ruth would be immensely proud of the work you've done and I hope the Lavender Trust event went well and brought in the dosh! It is so sad that women have died leaving young children behind, especially as the medical profession seemed to be entrenched in historic statistics and not open to the fact that new trends could emerge. Raising awareness, for which the Lavender Trust has been key, has been an excellent tribute to Ruth and I think she'd be very proud of that too.

My best wishes to you, Justine.

Anonymous said...

Ruth would undoubtedly have been so proud and loving. I hope the day went as well as you could hope.

Justine Picardie said...

Thank you so much to all of you for your lovely comments. Last night was wonderful -- we raised a great deal of money. I'll write about it properly tomorrow. Justine

Justine Picardie said...

Crimeficreader -- I was so moved by your comments. It also makes me incredibly angry to hear about your best friend's treatment. When Ruth was diagnosed -- or rather, when she was finally told the truth, after her misdiagnosis -- there was still this weird assumption that 'younger women don't get breast cancer'. And yet we know that this is the age group with the worst prognosis, and often with the most aggressive form of the disease. I hope the Lavender Trust has made people more aware that younger women DO get breast cancer -- 8600 of them every year, and rising...
But it's terrible that your friend was given such appalling treatment.

crimeficreader said...


Thanks for your comments. I do hope you realise that in sharing my experience, I was not looking for sympathy; I merely wanted to make others aware that initial diagnosis and treatment are not the end. You can be in remission and still need to fight for the relevant care to ensure that remission continues. As you say, Justine, "... younger women DO get breast cancer -- 8600 of them every year, and rising ...".

That march may not be stopped for now, until we know more facts and can seek prevention, but it can be decelerated with early and accurate diagnosis and appropriate aftercare.

Sorry, if I sound strident here, but I was asked to deliver an eulogy at my friend's funeral. I don't think I've had a harder moment in life; trying to read the carefully prepared words and swallowing the tears - until I watched Ann's children later at the reception: 5 and 3 years old approx. That was unbearable, but I'd taken them a couple of small new toys in the hope of distracting them on the day. Great with the elder; not so good with the younger, but she had her nursery friends with her (what community spirit!) and wanted to introduce me to her pals.

Subsequently, I visited them (with their dad in attendance of course) and found they wanted to remember their mum and to show me pics of her and talk about their memories of her.

I hope Ruth's children found the same or a similar course and are doing well right now. It's too easy in all this mess of life and death to focus on the children when the tragedy occurs and to forget them years later.

For all the women who have died from breast cancer at too young an age, and who have left young children behind, we must remember the longer term impact on the children also.

I'm so pleased that The Lavender Trust was embraced by a bigger cancer charity for its support and has lived for 10 years with its own clear identity and objectives. A "win, win" situation for all in a world where there is competition for funds and recognition - yes, even in the charity world - where once I was a trustee and saw it firsthand. Politics, most often personal, can abound with rabid enthusiasm.

Good on you, Justine, for all you've put in. Ruth's memory lives through your work and activity.

(Oh dear, not sure my words match what I mean on the final sentences there, but I hope you do get my real meaning...)

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Ross said...

Keeping her memory alive in such an extraordinary way is incredible, that is how families should support each other.
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michael morris said...

I lost my first wife to breast cancer six years ago. The first thing that the doctor said to her was, "Did you have fertility treatment? Her answer was "Yes".
She was 45 years old. My older son is still traumatized by the loss. It has been a hard road, before her death, and since.
I admire that you have set up the Lavender Trust.
I strongly believe that the link between fertility treatment and cancer is provable. It just requires the services of a professional medical researcher.
Perhaps your trust might finance this crucial research, and perhaps save many many lives?