These Widow's Shoes

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My Beloved Monster and Me

My beloved monster and me
We go everywhere together
Wearing a raincoat that has four sleeves
Gets us through all kinds of weather

She will always be the only thing
That comes between me and the awful sting
That comes from living in a world that’s so damn mean

My beloved monster is tough
If she wants she will disrobe you
But if you lay her down for a kiss
Her little heart it could explode

She will always be the only thing
That comes between me and the awful sting
That comes from living in a world that’s so damn
Mean

This was one of Ben and I’s songs. It was played during our wedding ceremony and I also included it in the funeral service. The Eels were one of the few bands that Ben and I agreed on – so we treasured them.

I confess that I never thought too deeply about the lyrics and had always seen it as a love song, influenced (I confess again) by the fact that I first heard it during a pastiche ‘falling in love’ montage in the film ‘Shrek’.

Of course it can be a romantic love song, but suddenly for me it’s not about Ben and I, it’s about Saskia. She is my most beloved monster and since Ben died she has been my talisman. The joy she exudes soothes the ‘awful sting’ so perfectly. And there are other ways in which these words are absolutely about Saskia, but perhaps those of you who know Saskia, or who are parents, can imagine.

Here’s a link to the gorgeous Mr Mark Oliver Everett (the Eels dude) singing the song.


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Sad

The only thing I get sad about is remembering how Ben suffered last year. My love…he went through such pain, and fear, and uncertainty, and frustration, and humiliation, and just, shit…

Those memories make me cry.

Last year I didn’t cry about it – well, sometimes, with Ben, we had a cry together. But it wasn’t the same as this reflective sadness borne out of memory. Then it was raw, ragged, immediate, borne out of togetherness in that moment.

Otherwise crying to myself or with friends was rare. Everything was too practical, visceral and everyday for tears.

Poor Benj. It would be lovely if he could see us now – Sas and I, and his family and friends, all well and surviving and looking after each other – and take pleasure in it. I don’t have any reason to believe that, but I wish it. After all the suffering of that last year he certainly deserved(s) it.


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I knew the day was coming…

…and today was it. Saskia asked ‘Where’s Daddy gone?’. She asked it first this morning. We were sat in the garden with my mum-in-law and she just said it, apropos of nothing. I stared at her for ages, tongue tied and baffled about why she was suddenly asking, and unsure whether she was actually asking what it sounded like. I’ve forgotten what happened next – I think my mum in law fielded with something vague and Sas quickly went back to bouncing on her new trampoline. Toddlers can be so unnerving.

This evening she asked again – this time she was more insistent and there was no doubt what she was asking. She looked at the picture of Ben next to the dining table and said “My Daddy”, then “Where’s Daddy gone?…Where’s Daddy gone Mummy?…Daddy lost”.

Well, though I’ve thought and thought about what I should say, I hadn’t come up with something that sounded right, so today I had nothing prepared and blundered through a number of things that came into my head…”He had to go away…He still loves us very much…He’s taking care of you” were all things I said I think. With her three-second attention span she was already thinking about something else by the time I’d garbled these words – she’d noticed some toy or other – and that was the end of it.

However, I suspect that having formed the question in her mind now, and verbalised it, it will be coming up again. I really have to figure out what to say. It’s so hard – I don’t believe in heaven, but already I’ve fallen into the trap of talking as though I do to Saskia. I want to be able to tell her what I believe – that Ben has gone but his love lives on in us and the people who’s lives he touched. But she wouldn’t understand that – it’s far too abstract. Should I say ‘Daddy’s died’? Her only knowledge of death and dying is from insects in the garden – would she be scared or upset by this comparison, or would she actually be matter of fact and simply accept it? Judging from the books I’ve read on explaining death to children, it seems important not to skirt over the basic facts of death – ie that the body stops working. So maybe at this stage I should go for the actual facts and not worry too much about the abstract stuff.

I just don’t know – it’s a really hard thing to do. I guess I’ll just have to feel my way and hope I don’t upset or confuse her.


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Grief is a strange creature

I still find the way the grieving process is working its way out in me to be very strange and unexpected.

Lately I’ve realised that one of my ways of coping with Ben’s death is by throwing myself into doing things ‘in his memory’…staying up late thinking of ways to increase readership of his blog, working on turning the blog into a book, fundraising for the hospice, writing my own blog, posting melanoma awareness info on Facebook, putting up pictures he took, or of him, around the house…and it goes on.

I guess it’s good – positive and pro-active. But it’s also prone to getting obsessive and unhealthy – as I lie here in the middle of the night writing this, unable to sleep because I’ve spent all evening working on and talking about Ben’s blog and my mind is racing.

It reminds me of how I used to be about work, before I gave it up for the much less stressful life of being a full-time parent. It seems that in the absence of a job, I’ve unintentionally turned widowhood into one  – a new life  of campaigning, fundraising, event planning, publishing and blogging.

It wasn’t a plan – it’s just happened this way. Do I want it? To be defined so entirely by what has happened to me? Recently I was given the grim epithet ‘skin cancer widow’ in a local newspaper headline – do I really want to encourage that label and wear it like a Macdonalds badge?

Not especially – but I don’t have a choice, it’s what I am – and for now I think it’s helping me to counteract the sadness and loss by being busy making and doing things for Ben and for his memory. Though it’s not necessarily conducive to relaxation or getting enough sleep!

So anyway, not what I thought grieving would be like – but I suspect this ‘work’ is part of the process for me.


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An article about the Liverpool Care Pathway

This is an article that I’ve recently written for the Pilgrims Hospice magazine…

UNDERSTANDING THE LIVERPOOL CARE PATHWAY

When my husband died at Pilgrims Hospice Canterbury in January this year I knew nothing of the Liverpool Care Pathway (LCP). Ben and I had been cared for wonderfully by the hospice during the week leading up to his death – after having looked after Ben at home for many months, it was a relief to be in the hands of caring and experienced professionals, and I walked away from the hospice feeling eternally grateful for how the team there had carried us through those difficult days.

Since then, our time at the hospice has never been far from my mind, and so when end of life care started to come up in the news with a furore over something called the Liverpool Care Pathway, I took an interest and decided to find out more.

What is the Liverpool Care Pathway?

The Pathway is a set of guidelines, designed to ensure the maximum dignity and comfort possible for a dying person. It was formulated in the 1990s by the University of Liverpool in conjunction with Marie Curie, as a way of rolling out the kind of best practice already used in many hospices to all medical institutions. It encourages doctors and nurses to regularly review all aspects of a dying patient’s care and make adjustments as and when necessary to make them as comfortable as possible. This would include, for example, checking that all medications or tests are actually still helpful to the patient and dropping any that aren’t. New drugs to reduce pain and discomfort may be introduced.  If, in the last few days or hours the patient is no longer interested in, and no longer needs food or drink, these would be stopped. Conversely the LCP’s process of constant review could lead medical staff to decide that the patient has taken a turn for the better and should come off the Pathway.

Described like this, it is hard to understand why there has been such an outcry against the LCP. Unfortunately it seems to have been applied and communicated very poorly in some hospitals (not hospices, significantly), leading to complaints, scandal in the media and a government-commissioned report recommending that it be scrapped.

Was Ben on the LCP?

With all this fuss and debate about the Pathway going on, I wondered whether Ben had been put on it. Certainly his end of life care resembled what I had read about the Pathway (for example, his drugs were pared down to the essentials, nobody was pushing him to eat and drink when he was no longer willing or able to). However, nobody had spoken to us about it, and since communication with relatives is a cornerstone of the LCP, I was unsure. As has always been the way, the counselling and medical teams at Canterbury Hospice were very happy to talk to me and answer my questions.

I discovered that Ben had not in fact been on the Pathway, in fact only roughly 60-70% of people at the hospice are. ‘Why?’ I wondered. In Ben’s case it was because his decline had been very rapid – when he had gone into the hospice at the beginning of the week we had hoped he would be staying only for a week’s respite, but after a few days his condition deteriorated quickly, so quickly that it would have been inappropriate for the medical staff to start talking us through the Pathway as Ben’s final hours were already upon us.

I asked what would have been different if Ben had been on the Pathway, and the answer was ‘nothing’, well not in terms of Ben’s care – LCP practice and normal hospice practice are basically the same (remember that the LCP was based on what hospices were already doing!). The only difference would have been the medical staff using the LCP as an extra tool to guide and prompt them, and there would have been more time spent talking with us the family about the decisions being made about Ben’s care. As it was, there wasn’t time for this.

Compassionate common sense

I can understand that many people might be worried about how they or their loved ones will be treated in their last few days of life, having heard the storm of criticism in the media lately. However, I can say that in my experience – whether the LCP is used or not (as I have discovered, it makes little difference in a hospice setting) – the care at Pilgrims is what I would call ‘compassionate common sense’. That’s basically what hospices are so good at, and what through the introduction of the LCP it was hoped hospitals might also be able to do – what a shame that it has backfired so badly. Fortunately, at Pilgrims, while the LCP itself will be put aside for now, the excellent practice on which it was based shall continue to go on.


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Squashed snails and dead flies

Being a novice parent I had mistakenly assumed that my first conversation about death with Saskia would be about Ben. Yesterday I discovered that in fact her first lessons on death would be in the garden: the squashed snail I’d accidentally trodden on (Oops! Luckily she didn’t realise that I was the culprit), the fly that wasn’t buzzing but looking distinctly like a raisin (“Don’t eat it Saskia!”) with its legs in the air, and even the dead flowers that she’s helped me to prune – all required explanations about dying and death.

Now it seems so obvious that this would be how she first encountered death (in a context that she can comprehend at least). So far we haven’t gone further than me saying that an animal or flower has died, with her listening, processing and sometimes repeating the words, but I guess it means the ‘conversation’ has begun, and so has Saskia’s journey of understanding.

Nature seems an obvious place to start. As adults we tend to talk about death in abstract ways – of the spirit, of memories, of peace – but Saskia’s world is concrete, it concerns the here and now, what she can see, feel, do, say. At the moment she cannot frame questions – but I would guess that as soon as she can, in 6 months or so maybe, she’ll want to know where Daddy is. We won’t be able to talk about the abstract concepts that we use with older children or adults to talk about death, so nature seems a good place to start. Maybe not squashed snails (a bit brutal!), but just ordinary life and death, growing old or getting sick, as it happens in the garden every day.


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Saskia and Daddy #1

I’m hoping to write quite a lot about Saskia in this blog – to explore and document her journey as toddler/young girl, as well as mine as her parent, as she grows in understanding of what happened to her Daddy and what this means to her.

I am sometimes asked how she has coped with what has happened – the answer has always been that she seems absolutely fine. She was just fourteen months old when Ben died – too young to have any understanding of illness or death. The trips to the hospital every day were just more curious adventures in a life where curious adventure is routine. Daddy was in bed and couldn’t play with her – but this had already been the norm for a while and she was used to it.

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Innocence and Experience

On the morning Ben died I asked my mum-in-law (who had been looking after Sas while I stayed at the hospice) to arrange for one of my friends to pick her up and take her for the day. I assumed she wouldn’t bring her into the hospice and I was shocked when I saw Saskia coming into the room where Ben was. I panicked for a moment – “she shouldn’t see Ben like this” – but something my mum-in-law said (I really don’t remember what it was now – maybe just ‘It’ll be ok’) made me stand aside and let Sas in. She seemed oblivious to the anguish around her – she still got lots of smiles and cuddles, and she just thought Daddy was asleep I guess. She was only there for a little while before my friend arrived to take her back to hers for the day, but I’m glad now that she was there with us. It didn’t mean anything to her at the time but I suspect it will be deeply important to her in future as she comes to terms with it. I feel the same about the fact that she came to the funeral too, even playing a part when she ran up to the front during my speech and then sat in my arms as I finished it.

Life since January has been packed with wonderful times for Saskia. She has seen friends or family practically every day and gone to animal parks, swimming pools, parties and play dates, been camping, been on a trip to America. She has an amazing life, and she enjoys every minute – she seems to be a happy soul by nature.

Of course I’ve watched closely to see how she has reacted to Daddy no longer being here. On the night of 3rd January (the day Ben died), we both spent the first night back at our house for a few weeks. For months previously the bedtime ritual had included a trip into our bedroom to say goodnight to Daddy, but this night I walked straight past the room and into her room. I think she looked expectantly towards our door but otherwise didn’t say anything. I got her dressed, we read some books and then I went to put her down to sleep in her cot. Suddenly she was pointing towards her door (which faces our bedroom door) agitatedly saying ‘Daddy, Daddy’. I had no idea what to do so I think I just said goodnight and left the room – she must have been sleepy as she was soon fast asleep.

I came downstairs and relayed the situation to my parents and in-laws who were spending the evening with me. I think it was my mum-in-law who recalled an interview on Radio 4 that she’d heard just a short while before in which a young woman talked of her father who had died when she was too young to remember. Despite this she felt she had known him all her life and he had played a major part in it, to the extent that she asked herself what he would do when she had to make important decisions. The young woman felt this was because she had grown up around people who talked about him constantly. This story made such a lot of sense and has stayed with me since, inspiring me to keep Ben alive in our household by talking about him as much as I can. From that night onwards the evening ritual included a trip into our bedroom to look at the photos of Ben from our wedding and say goodnight to him. More recently we have photos in her room  so now we look at those.  She has accepted this change so easily (she’s still so innocent I suppose), which is a blessing, but also very sad.

There was just one incident when I wondered if she’d begun to understand. She’d sat down to watch a new DVD – ‘The Hungry Caterpillar and Other Stories’. A story about a little girl who wanted the moon and asked her father to get it for her had just started when I wondered off into the kitchen. A little while later Saskia came running to me, really upset, shouting ‘Daddy gone!’. For a moment I froze on the spot, my heart in my mouth, then I went back to the TV with her and cuddled her while watching the father come back from the sky with the moon for his daughter. Sas was too young to talk about her feelings (still is) so I had no idea whether it was just the story that had frightened her or something more. It certainly cut through me – I needed that cuddle as much as she did.

These days it’s hard to know exactly what ‘Daddy’ means to Sas. She knows who her Daddy is – the one in the pictures, that maybe (I hope) she still has memories of. And she knows other people’s daddies, and daddies in stories. When she plays ‘families’ with her toys, there’s usually a daddy there too. I am so curious to know what is in her head. I guess soon enough she’ll be able to tell me, and that’s when the real challenges of trying to explain where Daddy has gone will start. I think about this a lot and play out the conversation in my mind as I imagine it might happen. But I know she’ll probably come from left field, when I’m least expecting it, and I’ll be lost for words and make a hash of it. There will be much more to write on this theme…


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Widow’s decorum

Last night I succumbed to ‘widow’s decorum’ – well, not quite, but it certainly got its neatly-trimmed claws into me.

My friend put up a Facebook comment about the show Luther and I immediately typed a reply: ‘I’ve lusted after Idris Elba since Stringer Bell in The Wire – PHWOARRR!’ – but then I stopped. “I can’t send this!” I thought, “It will sound like I’m being disrespectful to my dead husband!”. My finger was paused over the send button for ages, going back and forth in my mind between ‘no one would really think that’ and ‘but what if they did?!’. In the end I added an extra bit in brackets, excusing my brazen comment with the reassurance to readers (who were probably non-existent as it was midnight by this point), that this would be ok with Ben as ‘celebrity lusting’ was accepted in our relationship – Idris Elba was my latest, his had been Jennifer Connelly for some years, though Joss Stone had also starred at some point.

While I really rather liked this incidental little reminiscence about us, I was annoyed that I’d felt the need to excuse myself. If Ben was here he wouldn’t have minded – he would have probably added some sparkly little witticism of his own about Ms Connelly – but because he’s died, I feel I have to act differently, with dignified respect at all times.

I am a terrible worrier about what people think. Ben was the king of not giving a crap. I really should be more like him on this one I think. Sod widow’s decorum.


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A long time grieving

In many ways my grieving process began a long time before Ben died. I suppose it probably began when he first got the terminal prognosis back in February 2012, almost a year earlier.

Throughout Ben’s last year (well, ten and a half months if being exact), I blocked my mind off from the possibility of Ben dying. I accepted the facts begrudgingly, but never dwelt on them. I think there was a naivety in there somewhere – not having experienced death close up, to someone young or someone I cared deeply about, it seemed impossible to imagine it really happening.

Despite my sanguine approach to it all, the reality was that Ben was changing. The mental and physical affects of the prognosis, disease and treatments were gradually stripping away his old self. He wrote about this in an extremely moving blog post called ‘Dark Days‘: six months after his ‘it’s terminal’ appointment, he described how his battle with melanoma had cost him his independence, his identity, his energy and mobility, his confidence and his relationships, not least with our then one year old daughter.

I remember my counsellor describing this as Ben ‘grieving’ for his own life. I thought it was an odd way to look at it – but now I see what she meant, and it has made me realise that I too had much to grieve during that time.

I didn’t lose Ben all at once on 3rd January. I had been losing him for a long time before that. Happily the real essence of Ben – his love, kindness, intelligence and humour – never left him and so I still had my husband and we could still love each other even to the end. But I had lost so much of the Ben I’d had before.

I lost my co-parent. Right from the beginning when Ben was suffering with back pain, he was unable to cope with the physical demands of nappy changing, lifting, getting down on the floor to play. I encouraged him to do other things, like the bedtime stories, but he was reluctant – looking back I see how painful it was for him to share such tender moments with Sas. In the earlier days he did spend some bedtimes with us, just sitting in the room if he didn’t feel up to reading. He often got tearful. Looking back it seems he gradually withdrew from all the parenting – partly because he physically couldn’t manage, but perhaps also to protect himself from the hurt. So so sad. Not to say he had no involvement with her – there were still happy moments together the three of us, and when Saskia was crying at night there was someone there for moral support and a second opinion – but these occasions became few and far between.

So whereas in Saskia’s first six months we shared the parenting – it was an exciting new adventure we were embarking on together – after that I effectively became a single parent. Much of the time I just got on with it and accepted that that was just the way things were for the time being, but sometimes it was hard. The worst was weekends, when my friends (mostly other mums) were spending family time with their husbands. I felt I couldn’t intrude on their time together so hung back from suggesting get togethers and so found it was just Sas and I all weekend – lovely for a while but I soon got lonely without adult conversation.

I’m not looking for sympathy about this – Ben was having a MUCH harder, and lonelier time. This is just to explain how I had to get used to the life of a single parent long before I actually became one.

I also lost Ben my companion in fun – we used to love cycling, surfing, trips to the pub, getting pissed together, visiting friends, having sex, hanging out with our baby girl. It all stopped over that year. We still made each other laugh and had great conversations, but by the last few months most of our time together was either in the evenings (as I was out and about with Saskia during the daytime) watching TV together, or during long trips to London for hospital appointments. All our ‘quality time’ was overshadowed by the gloom of Ben’s illness and the limitations it was placing on our relationship.

Ben was (and will always be) my rock, but he didn’t have the strength to hold me up as well as himself. Fortunately I had amazing support from my family and friends, but it was hard not to be able to share everything with him as we had always done before.

So as Ben had been suffering the loss of his former self, I was suffering that loss too – not in the same way, or to the same extent – but still I was losing the husband I’d had.

A few days ago was the six month anniversary of his death. I’ve often wondered at how well I’ve coped, but I think much of that is to do with the fact that I had to deal with some of the loss long before Ben went. As time goes by I miss him more – I feel maybe I developed a tough skin through last year which has stayed on until now. I’ve been strong and capable, because I had to be, and I haven’t felt sorry for myself much. Right now I really miss him though – I can’t sleep and I’m lonely here in bed and loads of stuff in the house is broken and he’s not here to fix them and I want a hug. Tears…

One thing I have learnt is that grieving is a complicated thing (Is it a process? I’m not sure). For me it has taken unexpected guises – often I have not recognised it as grieving at all.

The Ben I lost

The Ben I lost


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Experimenting with Twitter

I am almost at the end of my ‘Melanoma Month’ project – my first foray into the weird world of Twitter.

Quite late in the evening on 1st May, when us Mummies should have been sensibly heading off to bed, my friend and I were still up chatting about Ben’s blog and ideas for keeping it alive. She came up with the idea of using the official designation of May as ‘Melanoma Month’ as a hook for my own Twitter campaign – tweeting one of Ben’s posts for each day of the month. I loved the concept, and having no time at all to procrastinate (it being 10.30 by this point), I quickly signed myself up to Twitter, sent out my first tweet and announced my grand plan to the Facebook world.

Now it’s almost over I feel glad that I did it, although it hasn’t always worked out exactly as I’d expected and I’ve been through a gamut of feelings about it since that night.

I started off very excited – I had no followers so I was immediately on a mission to find the right sort of people and organisations to follow so that I could hopefully coax them into following me. After a few days my excitement was taken over by a gloomier mood – I didn’t like the fact that I was now spending all my free time reading cancer blogs and looking at cancer charity websites – it was bringing me down. So I tried to step back from it a little. While my ‘campaigning’ efforts did reap a few rewards, with some key organisations following me (MacMillan, Pilgrims Hospices, British Association of Dermatologists, AIM at Melanoma), I was getting very few retweets and it wasn’t having any significant impact of blog traffic.

Meanwhile the tweets were also coming up on Facebook. After the first day or two’s excitement I started to worry about the fact that all my friends on FB were seeing these tweets – maybe they’d had enough of this already and it was making me seem pitiful and obsessed. I decided to put that worry to one side, especially as I could see that the blog was getting regular hits via Facebook. From the likes and comments I could see that some people who had read it before were grateful for the chance to read it again, but a little each day rather than being faced with the whole thing all at once. Plus there were some new readers – people I’d befriended since Ben had died.

So although as a ‘Twitter campaign’ it hasn’t really worked (I don’t feel it’s helped to get it ‘out there’ in any major way), it has meant that the blog has had visitors every day (around 20-30 on average), several them reading it for the first time.

And I’ve learnt a bit about Twitter and can keep using it now and then to publicise blog-related stuff. So not a waste.

The most unanticipated impact of the Twitter project has been on me personally. Every day at breakfast time I load up the computer, read the next post and then try to come up with a punchy little tweet to sum it up. Day by day I have been rereading and reliving Ben’s last ten months, and as the end of the month has approached I have felt a sense of sadness and foreboding, knowing what is to come. It feels as though by sharing his story again in this way I am bringing about his death all over again. Often I have woken up early and read through and thought about the post while waiting for Saskia to wake up, or been thinking about it through the night. Sometimes a post has preyed upon my thoughts throughout the day.

I think I will feel relieved when the month is over – it has been emotional and sometimes a darker experience than I’d predicted – and I’ll be glad to be on the other side.