We only know we have it now

Today – 31 August – is the ‘anniversary’ of my father’s death. Is it really 13 years? And so every year at this time, I feel sad. I’m now able to remember Frank, my father, happily and recall memories fondly; but he was my first experience of deep grief. But today is also a Friday. And now, on Fridays, me and Ronnie go for a walk – somewhere. Ronnie writes a regular blog post of ‘The Friday Walks’. Sometimes it’s over on the shining shore on the Wirral, the Dee estuary with its beaches and marshes; and often we combine a visit to my favourite botanic garden at Ness; sometimes further afield like Anglesey; sometimes it’s here in Liverpool, an urban walk; and sometimes it’s somewhere new. And today is a new walk.

New walks are tricky. We don’t have the route fully mapped out, we might not like it… but we like to find new places to extend our walk repertoire. Ronnie has suggested Churchtown, north of Southport and the marsh beyond, about 30 miles north of Liverpool. I’m not sure, but when Ronnie tells me there is a botanical garden at Churchtown then I’m keen to go.

I won’t describe our walk in detail, after all I know Ronnie will sum it up perfectly. (In fact he has done here – and if you look at the photos on Ronnie’s blog you will see I am sporting a rather large rucksack for a day walk, but I am practising with a heavier pack for my pilgrimage walk for Rach in a few weeks). Anyway, we arrive at Churchtown – which is delightful – we walk round the village, the churchyard, the lovely thatched cottages and old brick buildings, and we arrive at the botanic gardens, which are quite simply a gem. We find a bench and, as usual on the Friday walk, settle down to have our packed lunch.

As we are sat there I say, ‘This is great, isn’t it?’ but not really a question. Ronnie looks up from his lunch and says, ‘Yes, we’re doing alright aren’t we, in our after,‘ and then pauses. We are both silent. We both know we weren’t guaranteed an after. By any means. We also don’t know how long this after will last. We only know we have it now. My eyes fill with tears.

‘This is our weekly holiday,’ says Ronnie. So matter-of-factly. Yes. It is. Every Friday, we do this. We just do it. Other people exclaim over our ritual, but all we do is decide to do it. It’s not special, it’s ordinary now. The Friday walk.

The gardens are lovely, sort of gardens mixed with municipal park, but green and lush with a lake and lots of other people using them.

After the botanic garden we drive up to the marsh and walk out along the salty, empty sandy road to nowhere, just the edge of a wide estuary. I love it. The open-ness, the green-ness, the birds and the space.

And so, in the ‘unknowingness of breast cancer‘ which I wrote about before on our walks, we find ‘ordinary’.

I’m having a tough time this summer, losing my dear friend Rach this year has been very, very hard. The grief is immense. I’m taking a lot of time for myself. But in a moment when I dip back into the blog world I see that Marie is ‘celebrating ordinary‘. And that’s something I’ve longed for, snatched at, selfishly wanting the plain and simple ‘ordinary’ of everyday life. I realise that I have so much ordinary now… but it’s taken five years to find it again. But it’s definitely back.

25 August 2012. Ordinary.

Yes, that’s Saturday morning in Liverpool. It’s sunny and I peg the washing out, our sheets, on the line in our back yard. An ordinary yard, an ordinary sky. But really, not ordinary at all. If you think about it.

And what today reminded us about, is that you can find all sorts of lovely (and ordinary) places just by deciding to do it. And I’ll take ‘ordinary’ any day of the week.

Celebrating life

I write a lot about flowers and plants, about gardening on Plot 44, of scenic walks and happy times; about celebrating life, and especially gardening – so much so that I now have another blog where you can follow my gardening activities – Plot 44. But one of the realities of being alive, is that we will face death. We all die. And my experience as a cancer patient means that I’ve thought about death a lot.

And these last few months I am in grief for the death of my friend Rachel, who died of secondary breast cancer age 41, in February 2012. Whose ‘celebration of life’ service I structured and delivered with my friend Gayle Sulik in New Jersey, and the memory of that is a ‘good’ memory. It felt so right to do that for her.

3 February 2012, out on the shining shore on our regular Friday walk, which as it turned out was a few days before Rach died, and the last ‘normal’ Friday for a while.

Just before Rachel died I had, after much thought and reflecting on how breast cancer had changed my life and how I wanted to use that deep reflection, decided to apply for a training course to become qualified as officiant to perform services for life celebrations after death. (This is just one organisation, there are several who offer training). Celebrants are trained to perform unique services to mark the lives of people when they die, without religion, in a way that focuses sincerely and affectionately on the person who has died. Back in 1999 when my father died we had this type of ceremony, and it’s stayed with me as a ‘good’ memory, a happy day, a celebration as well as a time to say goodbye. Now, because of my experience with breast cancer, I’ve become comfortable talking about death, and illness. I am not afraid to have deep conversations, I am comfortable with ‘difficult’ subjects.

I talked to Rach about this, in what was to become our last Skype together. Rach thought it was a great idea. The hurdle for me though, is that I don’t have enough money to pay for the course fees. ‘No worries,’ said Rach, ‘you can just ask people to chip in. I’d chip in for you, you’d be great.’

Star gazing

Sarah with Rhona in Spain, March 2012.

This is a guest piece from Rhona Simms (née Shepherd) who we just had a holiday with in Spain. My piece ‘Letting go‘ is about the time Ronnie and I spent there with Rhona. 

“When I asked Sarah and Ronnie whether they would like to join me on the ‘Annual Spring Clean trip to Spain’ which I make every year to clean our apartment there, I knew it was a big ask. For me, it’s just about practical things, because the main holiday there with my lovely family would happen later in the year. But wouldn’t it be great to share the evenings with two people I really care about, and who I know have had such a tough few years? In fact the last five years had changed the course of their lives forever, and although Sarah had reached a stage where all active treatment for breast cancer was complete, I knew that losing her dear friend Rach had clearly put her in a dark place where pain, grief and anger were all clambering for attention.

When a friend tells you they have breast cancer, you want to do something that stops you from feeling helpless, and that may make a difference, something practical as nothing else can really help, can it? And when a friend tells you their best friend has died of breast cancer, and you watch them carry out the most moving and meaningful memorial celebration of a person’s life you have ever seen, and know it is their best friend being remembered, you want to hug them, and tell them that you love them, and that they are amazing. And I realised I could.

So I did the big ask (via Ronnie, of course, too easy for Sarah just to say no) and to my delight they said yes!

Like Sarah, flying takes me totally outside of my comfort zone, and flying with the budget airline that prides itself on its zero tolerance rules, just packing is always a challenge. But I know I have any essential ‘bits’ stored in Spain, so packing is not that big a problem. But how would Sarah cope? What medicines might she need to bring with her, maybe she has to be more careful about skin care products than I am, what if it’s cold and she has not brought warm enough clothes? And would Ronnie and Sarah let me get on with the cleaning and organizing whilst just enjoying themselves, and would they be offended if I said they could not help me, because that was not why I had asked them? What if, what if?

Has Komen ‘lost the brand’?

Don’t worry, you’re not really on Komen’s website

A tongue in cheek guest post here from Ronnie, a born satirist. The thinking being that satire might be able to get to the heart of a serious matter, in a way that more straightforward social critiques sometimes don’t. 

“First, a word of explanation may be necessary for our readers not based in the United States. ‘Komen’ in this post is ‘Susan G. Komen for the Cure’ - the most widely known, largest and best-funded breast cancer organization in the United States, but one that has been criticized for its use of donor funds, as well as its choice of sponsor affiliations and its role in commercial cause marketing. In early 2012 Komen took a controversial decision to cut its funding of Planned Parenthood, a decision widely seen as politically biased and revealing Komen’s close association with the Republican Party. The decision was reversed within a few days, but the damage to Komen’s reputation is considered by many to be serious, permanent and possibly final.

Over here in Liverpool, I’d heard of Komen, of course. But my interest was particularly piqued when a British newspaper, The Guardian, started reporting in detail on the Planned Parenthood issue, quoting our friend Gayle Sulik, talking about pink culture organisations in general, and Komen and its recent difficulties in particular:

‘Komen is the largest and is held up as the gold standard. But it is just part of it,’ she said. ‘There’s the conflict of interest, with regard to the companies associated with pharma and diagnostic tools, who stand to benefit from treatment. Then ‘pinkwash’, where products might be carcinogenic, to unhealthy products like M&Ms. I’ve even heard of Pub Crawls for the Cure. It’s part of the general culture.’

Gayle Sulik, sociologist and author of ‘Pink Ribbon Blues’, said pinkwashing is only the beginning of how ‘breast cancer culture’ undermines women’s health. Sulik, a researcher at the University at Albany Department of Women’s Studies said that the culture has caused a split in advocacy groups between those focussed on awareness and education, like Komen, and others.

‘Komen is under investigation by the public. So far I don’t see the public being very forgiving. There is so much product placement, so many huge events,’ said Sulik. ‘It will be interesting to see what happens next.’

So then, on with our tale. Let’s see what might have happened next…

End of life

Ronnie reviews a book on a subject all of us with a cancer diagnosis have most likely thought about.

“Death, to paraphrase Steve Jobs, may very well be what makes life so valuable, may well be ‘life’s change agent’. But we still don’t like to talk about it.

It’s a few of months back. Sarah, Fiona Shaw and I are all at the magnificent British Medical Association building in London (Designed by Edwin Lutyens, no less). The formal part of the event is over, Sarah has her ‘Highly Commended’ status for her book, and now it’s drinks and mingling in the crowded hall. But I notice a couple of women there with a large space around them. I remember them winning a special award for their book and go over to congratulate them, wondering why other people aren’t doing the same. ‘This is always happening to us,’ they laughingly explain, when I get to them. ‘People, even the medical people this room is full of, are terrified of our specialist subject. They can barely even say the word. The word Death.’

The two women are Mary Jordan and Judy Carole Kauffmann,  authors of the book ‘End of Life – the essential guide to caring’. Sarah and I have both read the book now, and both think it’s well worth recommending. Here’s why: