Stuck

Apparently, my grief is stuck.

I've been having a bloody nightmare. Too often I have found myself blundering around, on a different planet, incapable of remembering something that happened last week or five minutes ago.

Sometimes the pain is unbearable.

I've felt things build up through the day, going from a mild feeling of unease in the morning to what I'd call a complete disconnection and a head full of fuzz, by the time it's evening.

All the time I am wondering if I have slipped into a clinical depression.

With emotions so close to the surface, my temper has been short and I have yelled in desperation at the smallest thing. I've doubled up in tears and got a parking ticket on a day I ventured out in connection with official matters. I've been buried in mountains of paperwork and after an initial spurt of 'getting back into it' at work, I was forced by way of being a bumbling wreck, to spend some time by myself at home. I felt safe in front of the telly, watching crap. There have been painful tears, helpless crying in supermarkets as I remember stuff from this time last year or the following months.

Songs on the radio have me in floods.

Flashbacks are coming thick and fast.

I felt that the more time that passed since we lost Neil, the further away he feels and I can't bear that. I remain grateful for all I do have, our beautiful children, wonderful family and friends and remind myself how much worse off so many people are.

I have answered my own question about whether my state of despair comes from grief, depression or perhaps both. I am clear that I'm not depressed. Any whiff of that and I would be straight to the doctor, I have always promised myself that, but sometimes it's hard to know the difference.

My grief has turned messy - violent snot-filled episodes of holding a jumper I bought Neil to my chest and howling in the small hours. It helps to let it out.

Our lovely grief counsellor says she would like to see me more often and that I will bring Neil closer again by thinking of good times. She acknowledges how hard that is but that  I have to try.

There have been times when I have been able to think of Neil and smile, on the aeroplane when we went away for a week, for example, as I imagined him there with me. But most of all, recalling how much we loved each other and the laughs and care we have shared, just makes me worse. It hurts too much and sometimes, I get furious that we can't still do those things.

But today, for the first time in ages, I have not only found my way into work, but returned after a lunch break. I realise how lucky I am to have been able to build my own work to the extent I can still be paid and not be here. I need to get on with it.

So that's what I'm doing.

Now when I feel stuck I think of the fact that Neil wouldn't want me to sit there doing nothing. I know he would want me to be kind to myself and to take my time. I don't think there's anything wrong with still grieving for the love of your life months or years after he is gone.

But his words that I shouldn't become a victim are ringing in my ears and I am simply doing my best. Writing it down helps. Thanks for reading.


Why can't I say the W word?

That's widow by the way.


There's a new book due out called A widow's guide to sex, love and relationships.

It's a novel -- not a self-help book :) -- and has reportedly bagged the writer a $700,000 advance.

Here's what author Carole Radziwill says about her work:


I couldn't help but wonder...Can sex and love co-exist peacefully? Are widows the new virgins? Are men biologically hardwired to spread their seed? The Widow’s Guide to Sex & Dating is a novel about death, sex and love, in that order.

And here's an opener about the plot:

While Claire Byrne is on a writing assignment in Texas, her philandering husband Charlie is struck dead in an absurd collision with a rare bronze sculpture. In the odd weeks that follow – funeral, Xanax, a swarthy undertaker, and mounting bills  -- Claire braces for her new life. She surrounds herself with an eccentric chorus of friends, psychics, storytellers and Jungian shrinks to guide her way. 


Described as based on real life but not autobiographical, it's tapping into a fascination with how widows relate to the opposite sex.

The salacious tome has already grabbed the sort of column inches more earnest authors can but dream of.

But it makes me feel a teensy bit queasy. When do we ever hear of widows as anything other than a stoic older woman forever living in the past or at the other extreme, a sex starved predator for whom other people's husbands are easy prey?

I'm neither and nor will I ever be.

"Are widows the new virgins?" what on earth does that mean? I don't know but I do know the answer's no.

I'm interested in finding out about how we view widows and how stereotypes may be challenged.

Do you know of anyone or anything I should read about to help me as I find out for myself what it's like to be a widow? What resources would you recommend?

I'd love to find out more -- even if I can't bring myself to say the word out loud.

Thank you.

Sec Ed feature on helping bereaved pupils

Thank you to everyone who replied and offered their insights about helping bereaved children at secondary school.

The resulting piece is published today and you can read it here.

I'm pleased to have been able to contribute this feature and hope that it can help raise awareness of how grief isn't a straightforward journey for teenagers.

Thanks for reading.

This time last year

Tucking into mouth-watering seafood in a plush Welsh hotel restaurant, Neil beamed with happiness and pride on our twin daughters’ 13th birthday.

We watched peacocks strut past the window.

"Why do they have those colourful feathers?” asked our daughter Melissa. Neil smiled and explained why the birds fanned their blue-green tails.

“Don’t you love the way Dad knows this stuff?” I laughed to Melissa and her twin sister, Emily, savouring our meal at Ruthin Castle, Denbighshire.

It was a fantastic night.

Our enjoyment was made all the better because our stay was part of an expenses paid trip as guests of a local tourist organisation for our family travel site Have a Lovely Time. 

I wrote in my review that when you think of a weekend away with the family, North Wales Borderlands possibly isn’t somewhere that first pops into your head – as there’s no beach in paddling distance.

Taking two teenage daughters and hoping to keep them entertained all weekend can be difficult at times, wherever it is. But this area was jam-packed with adventures, I said. I added that the luxury that we stayed in was brilliant and provided us with some precious memories to treasure.

Little did I know how much I would want to cling on to those memories. 

We stayed our first night in Celyn Villa, a lovely little B&B near Holywell, with the breathtaking Clwydian Hills and Moel Famau as a backdrop.

Pauline and Les who run the B&B really made a fuss of us, with balloons, cake and chocolate  for the girls, as well as preparing a succulent steak dinner.

Wherever we went we had a standing joke about how a posh breakfast was the best thing about our stay. But breakfast time on our latest trip brought a new worry.

Neil was in pain. He feared he’d hurt his back playing golf.

We were supposed to be climbing nearby Moel Famau. When Neil said he couldn’t manage it, I knew things were serious. As our girls ran ahead, I huffed and puffed my way up and took in the wonderful view.

Then tears came, I was so worried about Neil and what on earth may have been wrong.

But I had no clue what life had in store and how cruel it could be.

Two days after coming home Neil was finding it hard to breathe. We were sent to New Cross Hospital, Wolverhampton.

That's when our nightmare began. Neil went through so much and we were there with him for every step. It's too painful for me to write about and I am still getting flashbacks.

This year, as our girls approach their birthday, it's five months since we lost Neil. I am inconsolable that he isn't here to see his beautiful girls on their special day and besides myself with sadness that they have only known their amazing, loving, decent dad for 13 years.

I am doing my best to look forward to all we have planned with love and hope and to keep going day by day.

But it's not easy.

Thank you for reading.


Telling our story in the Daily Express

A piece I wrote about me, Neil, our girls and our plans for our life without him appeared in the Daily Express yesterday:

We'll see the world in my husband's memory.

I wanted to see a story in print about how much we all love Neil and how we are determined to live our lives to the full.

I'm hugely touched by the incredibly positive and supportive reaction I've had since sharing our story. Thank you to everyone who has been in touch. People have shared their own stories of loss and told me they have been moved by ours.

The phone rang with people telling me how much they appreciated my feature, others emailed me and Facebook and Twitter was awash with people sharing the link and passing on their good wishes.

It was lovely for me to see this reaction, thank you.

I'm now also telling our story in a women's weekly magazine so I'm pleased about that too.

One thing the experience of working on this hugely personal story for a newspaper has helped underline for me is that I can be positive and look forward with love. This has made me more determined to carry on this blog as well and be positive when I can.

It also gave me a push to pick our travel site, Have a Lovely Time, back up. I haven't been able to bear to look at it.

I'm trying my best to think about what we have rather than what we don't. That's a lot. It's when I think what we have all lost that I'm inconsolable.

Thanks for reading.



For the love of Fudgie

The Christmas before last, we managed to persuade Neil after years of trying that we should have a dog.

He took us to our local rescue centre and we chose a scrappy little Jack Russell we named Fudge because of her golden-brown coat.

It was love at first sight for all of us. It was the best Christmas ever as we spoiled Fudge, lavishing her with the affection she craved since being abandoned as a stray. Even the home gave her away, waiving their usual admin fee as she had a poorly leg.

Two days after we had her was Christmas Day 2010 and we all enjoyed a fantastic walk in the snowy Shropshire countryside with my mum. We bought doggie Christmas treats and we felt great pride at being able to give her a "forever home" with our family.

Despite Neil being against having a dog so long, Fudge inevitably became his best pal, he got used to feeding her and taking her out most often, even though the rest of us had promised we'd be the ones to do that.

He took her to an obedience class, where the teacher laughed, wished Neil luck and sent them home - there was no helping Fudge, she was too mischievous - and totally not a fan of other dogs, or cats come to that, or ducks, swans, sheep, horses or rabbits.

Anything with four legs rather than two and Fudge was all for seeing them off. This summer I started to see some improvement and just now on our walk, she was the best ever. I told her to 'leave it' when we spotted a Staffie over the road and she just whimpered as I stroked her nose and told her she was a good girl for not going ballistic.

All the time Neil was ill, we both wanted to get back to training her but had to keep postponing appointments due to hospital stays.

Last Christmas is a blur, Neil was out of hospital and I cooked Christmas dinner, Fudge made a massive fuss of him.

Since Neil died, Fudge has helped us all laugh again as she chases a squirrel or murmurs with contentment when we fuss her. But she's also a massive pain in the neck - still in desperate need of training.

She gets me out of bed far too early every morning for a walk, has the most disgusting wind and welcomes everyone into our home with a wag of the tail and soppy look. Apart from the wind, she is the most wonderful companion.

She also eats clothes pegs, raw oven chips, refuses all doggie toys and barks at any dog with the temerity to walk past our house.

I've now booked to go back to training, a different class, to finish what Neil started.

This Christmas will be our first without Neil and our third with Fudge. I know there will be tears but there will be lots of laughter too, thanks to Fudge.

Inspirational people by Sarah, aged nine


This is a blog post written in March this year. I wanted to share it here as what Sarah wrote continues to mean a lot to me.

I've not written about my husband's illness. I haven't considered this deeply private anguish to be anyone else's business and I don't want to say anything to add to the distress of my closest family, most of all, our beautiful daughters. 

Now I am in shock again. A turn of events last week has been particularly harrowing and a subsequent hospital stay traumatic. I can't find the right words to say what's up. My body and mind is still absorbing this latest news. Alone in my car, I have screamed as loud as I can, or I may offer up a silent scream as my face stings with more tears. I try to let the pain out. It's not enough. 

I've been happy sometimes to share good news -- like when a treatment we were warned had meagre chance of working evoked a 'remarkable' effect.  Or when, after spending more than a month not being allowed to move and having a cumbersome corset brace fitted to support his back, Neil was walking down the aisle - no brace, no frame, no stick. A fortnight earlier he couldn't manage a single step. If friends contact me online to ask how we are doing, I may offer a snippet of news, but I haven't said much.

Yet this week also brought great cause for celebration. Neil's birthday was a wonderful day where our house was filled with friends, family and laughter.

Among the cards, my sister-in-law Helen sent us some homework by our niece Sarah as she thought we may enjoy it. I was so touched by what it said, I wanted to share it here.   


Inspirational people by Sarah 

Why are they inspirational to me?

This week's homework is about inspirational people. I have chosen to write about my Uncle Neil. He is inspirational to me because over Christmas and New Year, he organised a big celebration to show his love for his friends and family, even though he has been seriously ill and has been in and out of hospital.

Neil is my dad's brother and he lives near Birmingham with his partner and two daughters, Emily and Melissa (our cousins.)
In November last year, Neil was diagnosed with cancer. He was then immediately taken to hospital and stayed there for a number of months. Each time his family came to visit him he remained positive and planned the family wedding celebration in the new year. You would never hear him feeling sorry for himself or complain.
At the wedding, Uncle Neil was amazingly brave and was forever smiling. Obviously he was in a lot of pain but he didn't make a fuss because he knew it was everybody's special day, especially his wife and children. Neil needs a brace because he is so ill but he didn't wear it at all throughout the day. Uncle Neil was feeling very tired but he managed to make an excellent speech and made sure everyone was having a great day too. 

What work do they do?

At the age of 18, Uncle Neil went to Canterbury University and studied journalism for three years. Four years on, at the age of 22, he worked for the BBC and various other newspapers, before going into business with his wife. Unfortunately now Neil is unable to work due to his illness.

How do their lives truly reflect on the teachings of Jesus?

Despite his illness, Uncle Neil is a kind, caring and loving father and husband. He is determined to overcome his illness with good humour and optimism for the future. He always puts other people before himself and shows great courage in the face of his pain. This is how Jesus would want people to live.

How can I be more like them?

To be more like my Uncle Neil, I should stop taking simple things for granted. I have a lot of things to be thankful for like: good health, a loving family and caring friends. I should be more thankful towards them because some people in this world don't have these things.

I've added some comments below from the first time this was published as they make me smile.


Helping bereaved children at school

I'm working on a feature for a teachers' magazine about how staff can help pupils whose mum or dad has died. The wonderful charity Winston's Wish reports that this happens to 22,000 youngsters every year in the UK - that's one every 22 minutes.

Support available varies from school to school. Heartbreaking stories abound about how a lack of support and understanding can add to children's anguish. One little boy at primary school whose solider dad was killed in Afghanistan was refused permission to take in his medal, because it was feared it would upset his classmates.

At parents' evening I was taken aback when a teacher began to tell me he felt one of my daughters was 'letting herself down' by not concentrating fully in lessons recently. As this came around a month after Neil  died, I had no hesitation in butting in and telling him that as far as I was concerned, her getting out of bed and making it to school was enough of an achievement for me and cough, she most certainly wasn't "letting herself down".

"My mum rocks," she announced later and for once I took a compliment. I felt it was important for me to politely say to the teacher "let me stop you there," and important that my daughters saw me do that too. I'm affected by an inability to concentrate much four months on so the thought of them being reprimanded for that so early on was upsetting.

But overall I have to say that my family's experience of help at school has been hugely positive. Both my daughters' form tutors, their head of year and their headteacher have been very supportive, patient and understanding. 

Their on-going support and readiness to work with others has really made a difference and brought me genuine peace of mind that my daughters continue to find school a lovely place.

But it's such a shame that the support available is so variable at a time of such agony and can have a profound and far-reaching effect on the lives of so many children. Teachers need to be aware of the unique needs of bereaved children and recognise the challenges they may bring to the classroom, learning about how best to respond to them. That's where training from Winston's Wish can be so vital. 

Have you got an example you can share of how your children were treated at school when they had lost someone so very close? (This isn't for the purposes of my article, I'd just love to hear from other parents about their experiences as I'd love to see it discussed more.) 

I'd welcome any comments on this, named or anonymous and would like to possibly use the responses in a future blog post to help others. Thank you for reading. 

  

Children and bereavement: Families share their stories

This week I wrote a piece for Parentdish about how to help bereaved children grieve.

It wasn't an easy piece to pitch, write or see published. It gives a glimpse into how we are all facing up to things in the hope of helping others.

I once worked on a project involving research on how to support bereaved children.

As it's not online, I thought I would rewrite and edit it, as well as adding in some bloggers' wisdom.

This is a much longer version of some of the information included in the Parentdish piece.

Carrying grief with you

Of course, just like adults, no two children are the same when it comes to how they handle  bereavement.
I discovered that experts - and by that I mean bereaved people, will tell you that you don't 'get over' grief, you carry it with you and learn to live with it, day by day.
And while for adults and children alike that acceptance takes time, for children it also takes longer to understand what has happened.

Their understanding, reaction and on-going grief will also be further influenced by their age.
Joanne Mallon, also then from Parentdish, wrote this excellent post about how to talk to your children about death after Michael Jackson died. It's a great starting point and I'd strongly agree that Michael Rosen's Sad Book is a must-read for any child who has lost someone dear.

Stories of loss
Joanne's own brother died when she was nine.

I asked her how she remembered him.

She said: "My son's middle name is Jonathan. He looks very like him, but we have to remember that Isaac is his own person. I often talk to my children about Jonathan, what he was like - partly to remember him and also to give them some insight into disability.

"They talk about him - and their other relatives who've died - as angels, all together. My daughter writes little letters and prayers to him and we have a photo of me and Jonathan in the living room. I only go to his grave very rarely - his grave is in a cemetery in Belfast (right next to those of the IRA hunger strikers). I find graves very depressing. "

Karen, whose dad died when she was nine, said: "For children,  death is understood in terms of what it means to them, so if someone they love has died, it means they won’t see that person again and that makes them sad.

"It’s what made me cry when mum broke the news, and when I cried over the next few weeks and months it was always accompanied by the phrase ‘I miss Daddy’.

“I don’t think children are scared by death at all, certainly not in my experience.

"In fact I’m still not scared by death and I think that’s because it’s been openly talked about and experienced in my family – my mum’s sister died within a year of my dad, and my dad’s father too.

“We can forget how literal children are. As adults we understand implied meaning, but children may not always –

"Daddy’s gone away is a really unhelpful way of saying ‘Daddy’s dead’.
“I always joked that the highlights of not having a dad was that I never had to run my boyfriends past him, but in truth I so desperately wish I had had a dad."

A Mum Shaped Hole

You may know my lovely friend Laura from her blog Are We nearly There Yet Mummy.
But have you ever read what she calls her 'more serious' blog, A Mum Shaped Hole?
She says: “My mum died when I was nine, this is me trying to make sense of that. I am now 30 and I still struggle without her. The only way I can describe it is like having A Mum Shaped Hole in my life.”

Here’s an extract from a post, about how Laura's mum would treasure her grandchildren.

Would she think they look like me?
Would she admire my handsome boy all snails, scooters and bold adventure?
Would she smile at my beautiful girl all bossy and hands on hips smelling of apples and willful charm?
Would her heart melt when they called her name?
Would she be my shoulder to cry on when life is tough?
Would we laugh so hard that tears would fall?
I wish they had known her, and I for longer
I wish she was here
I miss my mum.

Laura told me: "I feel regret that my grief has affected my life in so many ways. Immediately afterwards was strange. Although she had been ill for two years I had no idea she was going to die. Although, subconsciously, maybe I did - as I remember being told off for humming the Funeral March one day.

"From my dad and sister's point of view it was a huge relief that Mum's suffering had ended. I come from a family where we laugh a lot and don't really discuss feelings openly and I think although I was encouraged to grieve, I was also encouraged to think about the good times.

"I now realise that I use humour as a coping mechanism and don't face things properly. The family motto is 'laugh in the face of adversity'!

"Even growing up I can remember getting cold sweats if the subject of mums came up and would rather avoid the conversation than talk about it and have people feeling sorry for me.

"It's only now that I can openly discuss my Mum and rather than feel embarrassed, feel proud of her.
"I became very clingy towards my dad and just wanted to be with him all the time.

"Since having my own children,  my relationship with my grief has changed. Because I didn't have many memories of my mum as a child I felt a bit detached from her.

"But when I had the children and experienced the love that she too must have felt I felt more of a connection.

"I had a long period where I felt so incredibly sad and I still feel panic sometimes when I think that one day something may happen to me and my children will be left without a mother. "

Insomniac Mummy also wrote hauntingly of the death of her mother, who died 30 years ago. To this day, she says, she doesn't know what happened to her ashes or if she has a memorial stone. Look at the comments too, to see not only how bloggers can rally round each other, but also how many stories of loss are yet to be shared.

Then, Insomniac Mummy wrote about her lovely Grandma. 
Englishmum often remembers her friend C and how proud her daughter would now make her.



Single Parent Dad

Another blogger writing movingly about his own experience of grief and that of his adorable son Max, is  Ian at Single Parent Dad.
Ian's wife Samantha died suddenly in 2005, when Max was a baby.

In a recent post about 'grief triggers' Ian says:
My boy understands why too, I do not like keeping things from him, he deserves the truth, however hard it is.

But last week was the first time it upset him.

I explained in the morning, what was ‘significant’ about the day, and while that was not a grief trigger for me, it certainly was for the boy.

While heartbreaking to witness, I was also immensely proud of my son. Proud because he had moved to such a level, gaining a better understanding of his loss, and able to show his emotion for it.

There was plenty of reassurance and cuddling, and we spoke about his mom, and how it was now. While she has physically gone, she will always be part of him, and gave him the best possible start in the world.


Is honesty the best policy when talking to children about bereavement?

Here’s what Cruse says:
In general, honesty is the best policy. However, there are also other considerations. When we talk to children about death we need to speak in language that they can understand. Also for some children we may let them know something about the death and share more information later when they are able to take it in.
“When we explain to a child about a death we may need to repeat what we say. We also need to be able to answer their questions.

"Also all family members need to be saying the same thing so the child does not become confused. It is also a good idea to let the child’s school know what you have said to the child.”

Bereavement counsellor Dodie Graves, from Wolverhampton's Compton Hospice, adds: “Because children can’t always express their emotions easily, understanding how they are dealing with grief can be difficult. It is common for children to want to be strong for their family, and it can be difficult for them to know who to turn to when they need support.

“Families’ bereavement support workers talk to children one-to- one, and with their families, to help them work together through their shared grief.

“They use puppets, games and art to help children express their feelings, and special memory jars and memory boxes to remember the person they’ve lost.

“They can also support families in learning how to communicate better together.”
Winston’s Wish (www.winstonswish.org.uk) has in-depth guidance for anyone wanting to help a bereaved child.

A gradual understanding

Parenting expert Sue Atkins stresses that it’s important to remember that children will not behave like adults.
It sounds obvious, but can be overlooked in these sad circumstances.
She says: “Children's understanding of death comes gradually.”

Sue's article on bereavement discusses how children of different ages may understand about death and grieve.
She says that from about nine years, most children will have an adult view of death, although this will depend on their development and maturity and their past experiences of death.

The best way of understanding what children think and feel about death is to listen carefully and to talk gently with them and be guided by them.

Many parents feel that childhood is a time free from difficulties and challenging events but in reality this just isn’t the case- but it’s how you handle the challenges that makes your children grow up well balanced, resilient and strong -able to handle the blows life deals them.

Sue adds: “It’s perfectly natural to cry in front of your children - if you explain what you are feeling."

What children going through loss need:
• Information
• Companionship
• Time to express their emotions
• Time to remember.
I’m very grateful to Sue for allowing me to use this information. She's a mum to two teenagers and a former deputy head teacher. She's also the author of Raising Happy Children for Dummies. Find out more at www.positive-parents.com


Where to find help:

Winston's Wish Helpline: 0845 203 0405 (Mon-Fri 9-5pm) Childhood Bereavement Network Tel: 0115 911 8070 Child Bereavement Trust
Tel: 01494 446648 (General)
0845 357 1000 (Information/support line)

Cruse
Helpline: 0844 477 9400
Road for you – part of Cruse helping young people: www.rd4u.org.uk

Compassionate Friends
Helpline: 0845 123 2304


Books you may find helpful


*If you would like to share a story of bereavement or offer any advice to families facing the darkest of times, please do leave a comment and let us know any links to posts you think may be helpful.

* A version of this post was published on an earlier blog.

* Some of the comments with useful information, that were originally added, will also appear under this post.   

How my grief feels


You can imagine the question I hear most these days.

"How are you?"
"How are you?"
"How are you?"
"How are you?"

I love how this shows people care.

Yet however well-meant their gentle checking up, I'm often stuck for words.

Sometimes I want to retort: "How do you think I f****** am?"

My closest friend told me the other day how well she thought I was doing. We discussed if I was 'back to normal.'
But I have lost half of me.

I will never be back to my old normal.

Sometimes it's all I can do to put one foot in front of another. Today I can't manage it. I'm going nowhere. I had a panic attack yesterday evening when I opened an important and troubling letter. Its catastrophic effect is still with me.

Other days I'm unshakable in my insistence I'm going to be okay. 
I don't know what doing well means. I suspect it means times like yesterday. I was at work, being productive. I walked the dog at 6am, made sandwiches for school for my girls, went to an important meeting. I smiled and shook people's hand, but inside I was struggling so much. I couldn't remember a thing.

I know I've been changed by grief. I still had a cry at dinner time yesterday. And again last night, imploring out loud: "Where are you Baby?" and dissolving into tears when a new TV advert rang out with At last my love has come along, words so carefully chosen among other precious tunes for Neil's funeral. Sitting on the sofa, I reach out for a cushion and squeeze it hard, imagining it's Neil's hand.

I've been thinking about the ways I have been changed by grief.

I thought that writing this down could help people who haven't experienced such loss understand a bit, if they want to. The way I feel will be different to anyone else facing such a close bereavement but I'm sure there are common threads recognised by others.

I feel

Anxiety

I've had three panic attacks in the last three months. This is a terrifying experience. They came when I was at my most crushed, I didn't know what day it was or what planet I was on. Fuelled also by rage, I feel like I tumbled into a black hole of these frightening episodes where I appeared to be choking. I wail and my breathing is heightened and rushed. They happened thanks to immediate unbearable stress. I can't say what those instances were - it's too much of a trigger for me to again feel so bloody anxious but they are caused by the pain of the reality of certain elements of all we have been through.

In general, I'm worried about stuff anyone would be - work, getting to places on time, cost of fuel, but I'm also stressing about ridiculous things - What if one or both of my daughters is in a car crash? What if someone complains that an article I've written is a complete load of shit and the editor agrees? How about the dog opening the locked front door in the middle of the night and saunters off down the road, attacking every cat in her way?

Things that would normally cause the slightest of worry are suddenly magnified out of proportion, bringing on too much stress. If I can't find the pegs when I'm hanging out some washing, look as if I'm going to run out of petrol or forget my pen, it's a disaster of epic proportions.

Shift this up a gear or six so I'm dealing with bills, banks and important documents and I'm practically on the floor.


Fear

I am scared of dying. I am frightened of getting ill. This is multiplied for everyone I love. Most of all I worry about what will happen to my girls if I'm not around.

Sadness

No shit Sherlock. 

Pain

I physically ache to feel Neil's arms around me or in the car, to stroke the back of his neck like I did when we weren't arguing about maps. I imagine sometimes he is there with me or I dream about him. When realisation dawns he's not here, I hurt like I didn't know anyone could.


Guilt 

I feel like I have failed. I didn't protect Neil from his illness, his anguish at leaving us or his passing.

Helplessness

I'm divorced from reality, I don't feel capable of going to the shop for veg for our tea or of accepting my friend's invitation for tea at her house. I'm in a different world and it's not one I think much of, thanks. Sometimes I feel like I'm on the outside looking in on other people, in the supermarket or at school meetings. Such mundane places are filled with the pain of loss as everyone else goes about their business like nothing has changed.  

Stuff that would under normal circumstances would inspire, move or entertain me, leaves me cold. I've lost interest in favourite TV programmes, can't be bothered to join friends on a night out and all the excitement around a magnificent British summer of pomp and sport has passed me by. When I think how much Neil would have loved it, I am inconsolable.

Rage

I've always been such a big softie but I have anger inside of me that needs to come out. Tears aren't enough. To watch someone you love affected as Neil was, to be faced with the incompetency and insensitivity of so many people who should have treated us better, as we both have, has completely changed my outlook on life. I think of the doctor who prescribed Nurofen gel when Neil had tumours growing in his back, the hospital staff who have filled five pages of apology for the way we were treated in his last days, the district nurse who came to our house on Christmas Eve and wanted to talk about end of life care with my children around us, the social worker who spoke to us like Neil's life was over months before it was, the ambulanceman who wanted to put my gentleman of a husband in handcuffs and the undertaker who failed to let anyone know when the funeral was and I could scream and never stop.
Our family did not deserve these body blows, least of all Neil. He isn't here to see an apology that came yesterday, bringing it all back and sending me into a panic attack. That's what makes me angry and there is nothing anyone can say to make it better. Cruel and unfair doesn't begin to cover it. 

Cheated

Married four months, there won't be a single wedding anniversary we can mark together, there won't be any more Christmases, no more birthdays, no more laughter together, no more holidays, no more cuddles, no more joint pride at our beautiful daughters' milestones. And then I think about the physical side of our relationship and I am lost, utterly bereft at the prospect of such closeness being snatched away. You find me anything to make any of that make any sense and I'll find you the pot of gold at the end of a rainbow.

Clumsy, forgetful and accident prone

I'm dropping things, losing keys, glasses, handbags, money, packets of biscuits you name it. I can't find the right words often, saying the wrong thing like Hilda Ogden or Mrs Malathrop, (see, Mrs Malaprop I mean, typical.) I feel an idiot. I've driven the wrong way up a one way street and parked in the middle of the road. When someone wags their finger or shakes a fist at me because they don't like the way I pull up over a white line, I shrug back at them and think:  'Tell someone who gives a shit.' 

Intolerant and rude

This upsets me, I love to care for people, to be there for them, but now I'm more likely to be annoyed, particularly may I say, by people who tell me they know how I feel. I am being an arse. 

A lack of confidence

Every minute of every day I suspect I am talking bollocks. I think I'm right 80 per cent of the time. I think everything I have worked on since I've been back in the office, or out on appointments has been a let down because of me. It can't be judging by what people say but I think they're maybe just being kind. I ramble on more than I ever have.

Exhausted

I want to sleep. A lot. I am sleeping deeply so that's a relief.

Lonely and isolated

My family and friends are amazing. I also seek comfort from compassionate strangers online. But my heart aches for someone who truly understands where I'm coming from. Lovely kind people want to empathise so they share their experiences of grief, when they lost a parent. It  makes me cross that my grief is different, I'm sorry for their loss but what can I say? This makes me disappointed in myself. Grief is not a competitive sport.
I'm going to contact the WAY Foundation to see what that's about. First thing in the morning and last thing at night, I think of Neil and what we would be saying to each other. Throughout the day I miss his conversation, shared jokes, kisses, and love. Standing at the sink or walking the dog, I repeat: "Love you Neil, love you Neil" to nobody but myself.

But there are still ways that my life is on track. I will not allow my new-found unabashed pessimism to derail me completely. I know this isn't what Neil wanted and my daughters don't need a mum who snaps and bickers all the time.

My resolve to make sure we are all okay is as strong as it was the day I promised Neil we would be. I have a clear vision of priorities, newly defined goals, a never before realised determination to look after myself and an abundance of love from my amazing family and friends.

I will always carry my grief with me, but just as Neil said, I will not let it beat me. I am not ashamed of my grief, it's the price we pay for love. Thank you for reading.

And thank you for asking how I am.

Love at first sight (or was it sound?)

SIXTEEN years ago a wannabe reporter sailed through an interview at an evening paper in the Midlands.
I should have been there to grill the then BBC radio journalist. But I was on holiday. I must have been a bit nervous. What type of keen but potentially inexperienced new colleague would the editor foist upon us?
A week after I returned, I found out. The successful candidate phoned me. He hoped it would be a good idea to come along and say hello, perhaps I could give him a tour of the newsroom and help him find his way around a bit before he started.
I remember that call like it was yesterday, how lovely this new voice sounded, how quickly I agreed to his polite request and rather inexplicably, how much I was already looking forward to him turning up.
"I'd like to marry that man," I thought when he did.
Ridiculous isn't it? (Two children on, we married in January this year!)
As he stood there, smiling, his blue-grey eyes shining and his immaculate suit making him look every inch a professional, I was knocked for six.
Beaming, I showed Neil round, introducing him to our colleagues. I remember thinking he could be my deputy, wouldn't that be great.
Days later he started work.
I wondered what on earth he must think of me as I asked him to write stuff, sent him out on jobs, or sometimes took him to task about some typo or confusing court reporting. If honest we all know this happened too often, sorry Darling. I wouldn't dare do anything to let him know how I felt as I started to day dream about meeting up after work.
If a group of us went out for a drink, I always tried my best to have a chat, wearing more make-up than I ever had before.
But soon I got another call with an offer I couldn't refuse.
Another editor wanted me to go and work for him, he'd pay well. Miles away, up North.
I agreed and a starting date was set.
It was at my leaving do that me and Neil got together.
Well I say got together, I jumped on him.
And I say, leaving do, but I wasn't allowed in after a few drinks in the pub. Club bouncers decided I was in no fit state.
Neil's car had broken down and he nearly hadn't made it, I was so nervous, I'd drank quite a bit, quite early on.
Neil offered to walk me home. So with a week before I was due to head off to my new job, I jumped on his lap on a park bench on the way home and told him how gorgeous he was. I'm not sure how much he understood. Too much vodka just possibly made me sound like I was talking in code.
And did I mention he was on calls? Neil was phoning the emergency services at regular intervals to see if there was anything to report for Monday's paper.
He also needed to ring me the next day to discuss these stories.
I got my apology in early. I was sorry for being too drunk to get into the leaving do, sorry he'd had to walk me home, sorry I was so pissed, sorry I'd jumped on him and sorry I'd gone on a bit.
And then it came.
"You don't have anything to be sorry about," he said.
I cannot tell you how I felt when I heard that. On top of the world comes close.
The kind souls in our office arranged a second leaving do.
That's when we became an item. Neil moved in with me for the few days before I was due to move.
As my new job turned into a nightmare, Neil was my rock. Truth be told I missed him too much.
My bosses weren't impressed.
"If you were anywhere near a professional you'd stay here at the weekend instead of shagging in Birmingham," they told me, among other things.
They may have had a point.
But we also managed to see each other in the week, even if it was a snatched hour here or there between a complicated train journey either way.
I hated my job but I knew I loved Neil.
And I have done ever since.
* An earlier version of this post was written for my previous blog and published a year ago. I'm also adding some of the orginal comments below as they make me smile.

Our melanoma story (to be continued)

As I waited for my hospital appointment, I could feel my stress level rising.

But it had nothing to do with my check up. Instead I was scared by a poster staring down on me. It showed a man with a cancerous mole on his back, and it looked far too much like a blemish I knew Neil had.

I was there for something of nothing and it was soon sorted. But I knew the image on that poster would be burned on my memory. Hours later Neil was on the phone to our GP and if memory serves me right, he was sent for a consultation with a skin cancer specialist that week, possibly the very next day.

This was 2002 and things moved quickly. Neil had cancer. It was melanoma. Crassly, we described the mole to anyone who asked as looking like a map of Africa. It was jagged and included different hues of brown and varying textures.

A few weeks later (please don't ask me how many, my memory is shot) he was in hospital having his mole removed from his back. We were assured it really wasn't much to worry about. On a scale of thickness, which these things are measured against, the mole barely registered.

Hearing Neil had cancer was devastating but we soon started to say it was "only" skin cancer. How lucky were we? All those poor families affected by this terrible disease and there we were - mole removed, job done.

Five years of check-ups always passed without cause for concern. We got on with life. We weren't being brave, or spiritual or particularly thankful even, we just thought any reason to worry had passed. We had no clue that cancer 'works' in stages. Neil was going to be okay now and that was that. We didn't research much into melanoma, our ignorance was bliss. Doctors were always upbeat and positive, it never crossed our minds that we had anything further to dwell on.

Neil was more than okay, he was an amazing partner, dad, son, brother, uncle and friend. Sometimes we fell out - mainly over money or our different approaches to spending it :) but most of the time we loved to be together, laughing, loving our girls and each other. We hurtled down slides together at cheap and cheerful UK holiday parks, spent far too much time on rollercoasters and at my mum's caravan in Wales. We went to Cannock Chase whenever we could. We were very, very happy. We talked and talked and talked, about serious stuff, politics, love, literature, history. Neil was so knowledgeable and I respected and admired his intellect. Spending time discussing such weighty matters was so very precious to me, when my more 'natural' state was so often considered sitting on my arse in front of a soap or reality TV shocker.

After years of instability in regional journalism, Neil came to work with me at our fledgling agency. We were very proud of this, and Neil was hugely supportive. But most of all we were proud of our beautiful girls. We knew we spoiled them a little really, but they never gave us any trouble. Sometimes Neil was anxious, he would ponder decisions for such a long time, asking an endless array of seemingly impossible questions, winding me up. But most of all, he was a gentle, kind, gorgeous man whom I love with all my heart.

In June last year Neil said he could feel a lump under his arm. He went to the doctor and this time, things didn't seem to move so swiftly. We saw this as a cause to relax, surely if it was urgent he would be seen in within days, we figured. Perhaps it was a blocked sweat gland, maybe it was a cyst. Friends and family urged us to look on the bright side, we certainly did but I also felt Neil was doing his best to keep the severity of the situation from me. He wasn't sleeping.

I've since seen correspondence between specialists and there was no doubt this was melanoma. After various scans and weeks of Neil assuring me "it could be nothing," he was booked in to hospital at Stoke for what was called an axillary clearance operation.

The surgery would take hours and was to remove lymph nodes to prevent the spread of melanoma. Again, we were as positive as we could be - this was good that they were tackling the problem, and we were told Neil would be given results to indicate if he had anything further to worry about. So we still felt removed and distant from any real danger, this operation was pretty routine in our minds, and plenty of steps away from any major impact of a disease like cancer. Writing this now I feel like we must have been in denial. But we played it down.

Apparently, once the operation was under way, the doctors would be able to see how widespread among the lymph nodes the cancer was and to determine whether it was likely to spread further. We didn't even know what lymph glands were. I'm glad we didn't, we would have been terrified.

The way Neil explained it was that they had to look at whether the melanoma was 'trying to break out' or was dormant. I'm sure this isn't a particularly good explanation compared to what the proper medical terms would be, but this is how we both understood it.

I think we were told the operation would last four hours but in the event, it turned out much longer. It was either six or eight hours, I can't remember which. A doctor came to speak to Neil afterwards but went on his way when he saw he was asleep.

Another doctor came and saw him to say everything had gone well, so we were delighted. Apart from that brief exchange there wasn't anything else by way of an update and we were asked to come back in a few weeks for a fuller discussion. Neil requested a chat with a specialist nurse who spoke in general terms about sun care.

He had a drain fitted to help rid his body of fluid from the operation at this point. It was due to be changed by district nurses. I remember I changed it a fair few times as well, but because my memory is so poor about this stuff now, I don't know why! I hated doing it, I was worried about letting Neil down, not being as diligent as a qualified nurse in this exacting process with plasters, bandage and gauze, but he kept promising me I was doing okay. We laughed a lot actually as I tended to his dressings, sitting in the sunshine of our conservatory.

We knew Neil had to rest but we also figured a change of scene would do him good. At the end of July we headed for New Quay, West Wales, joined by my parents in their caravan for the first week and Neil's mum and dad, in a lovely bungalow, the second.

But at the end of the first week, Neil started to complain that he felt a little sick and that he was in pain around the site of his operation scar and drain. He thought it was a good idea to call an out of hours doctor and spoke to NHS Direct to check of this was the right thing to do. Instead, they advised we should go to Cardigan Hospital, so we did. Unfortunately the doctor there said we should head for Aberystwyth, so we went to Accident and Emergency - we were fed up - Cardigan was 20 miles to the south of New Quay and Aberystwyth, 20 miles north.

I remember there was a lady next to us in who was in a lot of pain with cancer. I heard the nurses asking her to put a number to her pain, on a scale of one to ten. They told her how surprised they were that she was still in pain, and that as far as they were concerned, they would be out like a light if they had taken that many drugs which they said could fell an elephant. Charming I thought. Little did I know how many times Neil would be asked that very same question in the space of a few short months.
Neil stayed in hospital until Wednesday. It turned out his wound was infected. We had to cut our holiday short as he was sent back to Stoke.

Despite what we saw as an inconvenience of an infected wound, everything else seemed fine by now and as ever, we just wanted to get on with life. In August Neil returned to the golf course. He felt he had built his strength back up enough and was determined to get back out there. But he came home after barely swinging his club. He said he had put his back out straight away when he picked it up - and that he was embarrassed.

We carried on as normal, both of us working and giving minimum thought to the events of recent weeks, Neil's appointment with the doctor in Stoke had what we saw as a positive outcome - the melanoma had been contained and hadn't broken out, it was described as "borderline" - it. This was a definite cause for celebration and we shed some happy tears. Life could go back to normal.

In October, as a recovered melanoma patient, Neil was invited to take part in a study to help prevent the return of melanoma, trialling a drug called Herceptin (I think.) This was to be at New Cross Hospital in Wolverhampton, led by Dr Simon Grummet. After some typical fulsome quizzing from Neil about what it would involve, he signed up.

Agreeing to take part in the trial meant Neil would now have to have more scans, to make sure he was fully clear of any areas affected by cancer. The sequence of events is jumbled in my mind, but what I do remember is that initial tests showed tiny marks in both his liver and lung, but they were too small to determine their cause. Not for the first time we heard an assertion that "the more you look, the more you find," and that mostly, what was found was harmless.

An appointment was made to come back on November 30 to see if these specks had grown. If they had, this would mean they were most probably melanoma and treatment options would be explored and if nothing had changed, then it was most likely nothing. I can't be sure but I think at this point Dr Grummet advised that Neil wouldn't be able to take part in the trial as it was just about to start and his results would come too late.

Neil was full of energy, he was jogging most days, and was invited to find out more about a local six a side football side. We were invited on a review weekend in Mid Wales which would involve lots of fresh air and walking, with a touch of climbing some hills.

We celebrated our daughters' birthday on October 22 in Wales, but Neil was in a lot of pain. His back was really troubling him and when he said he couldn't manage to climb a hill with us but would wait in the car, we knew things were serious.

Back home, he went to the doctor to tell them about his back pain which he was putting down to a sporting injury. The doctor agreed, prescribing pain killers. I can see us there now as the doctor advised I should buy some gel and rub it in. Neil also took paracetamol and ibuprofen in maximum quantities. He was becoming withdrawn, his pain was becoming unbearable.

I rang for an emergency GP's appointment.

This time the doctor said she would consult pain management nurses at St Giles Hospice. Forgive me for stating the obvious but this was an alarming development. We couldn't understand why the advice had gone from 'rub in some Nurofen gel' to 'I need to speak to a hospice,' in a number of days. We went home bewildered and Neil rested.

Two days later, managing his pain as best we could, but to no visible avail, Neil was having difficulty breathing. I again rang for an emergency appointment. This time we were sent to the Emergency Assessment Unit at New Cross Hospital as it was feared he had fluid on his lung.

We waited for six hours that day and were admitted to a ward where a man in NHS-issue pyjamas was fond of yelling out at regular intervals to let everyone know his "cock was on fire."

"Oh he doesn't look good at all," a retired builder in the bed opposite announced to nobody in particular  after taking a look at Neil. He was right, Neil was grey.
I remember the doctor asking why we were there and I explained, as Neil could hardly speak, that he was in so much pain and that it was feared he had fluid on his lung. When the doctor promised Neil he wouldn't be in pain by this time 24 hours later, we both cried tears of relief.

He stayed in hospital for five weeks.

For three of these he was banned from moving from his bed.

He was fitted with a cumbersome metal brace that took two people to get him in or out of. We joked he looked like RoboCop.
He lost all mobility. He couldn't even shift himself around the bed in case his spine collapsed.

Neil had cancer in his back, his lung, his liver, his lung and his rib. A doctor told me and Neil's mum and dad that the cancer could not be cured. I opened my mouth and said I wanted to get married. The doctor said Neil had said the same.

A week later I sat with Neil when he was told he had three months to live if he didn't respond to treatment.

But we were told "don't expect to respond to treatment."

Radiotherapy started straight away. We had to wait and see what would happen, whether he would survive long enough to undergo chemo as well, but it was made plain this would be what was known as 'palliative chemo' to help lessen Neil's suffering as opposed to having any major effect on how long he could stay with us.

We focused on wanting to organise a wedding, but at this stage, we weren't allowed to plan where it might be. Because of uncertainty over how long Neil would live, we were warned we may have to marry over his hospital bed.

We worried ourselves sick about what to say to our girls. Neil wanted to be there to give them a cuddle.



*I've been advised to write this down and have plenty more to say. I don't know when I will get around to telling the rest of our story but three months on since Neil died, I felt ready to put this down. I love Neil today more than I ever have and the mass of emotions I am feeling day to day is confusing, tough and painful. But I promised Neil we would all be okay and I am doing my damnedest to make it so.