Thank you for listening

Thank you again to everyone who has read, shared and commented on the blog post I wrote detailing my complaint to Wolverhampton's New Cross Hospital about the way both Neil and me were treated days before he died.

I've had phenomenal support since penning this intensely personal story and last week appeared on the BBC News Channel, BBC One O' Clock News, ITV lunchtime and evening, and Sky News, who have kindly provided me with the above clip. I also spoke to BBC Radio Five Live and my audio was shared with various regional BBC radio stations. The Independent wrote an in-depth article and leader column about care for the dying and I've done a very sensitive interview this week with the Wolverhampton Express & Star. I had to turn down approaches from other national news programmes as I just couldn't be in two places at once.

This was because my blog post was picked up after being shared on social media by Joe Levenson from Dying Matters during their 'you only die once' awareness week. A report from the Royal College of Physicians said too many people dying in hospital were not being cared for as well as they could be. This was my opportunity to be heard, and thanks to Joe, I grabbed it with both hands. You can see there's a lot of emotion as I speak, my face is red and I only have to be asked a single question before I launch into recounting our family's turmoil, hardly drawing breath.

As you can imagine, for someone who wrote a blog post wanting just to be listened to, I never suspected I'd end up speaking to millions through national media. It was a cathartic experience for which I'm immensely grateful. Each and every journalist in touch has been hugely respectful.

I have plenty more I want (or need) to say about being bereaved and when I don't have a big pile of work to do, I hope to be back blogging.

Thank you.

Dear bloggers, I'd love your help

Since losing Neil I've slunk away from life. I used to feel that I was part of a lovely online community of parent bloggers but lately my presence has been sporadic and jumbled. I really haven't shared much online about how we've been doing -- give or take the few posts here.

As well as doing my best to get through everything that has been thrown at us and sorting out all a lone parent needs to get on with, I've been hiding. I have watched Homes under the Hammer and Pointless until I can tell within seconds of the opening credits whether it's a repeat. The same goes unfortunately for the Millionaire Matchmaker. Did I really just say that out loud?

I've had lots of ideas about things I would love to do, stuff I would love to write, but I haven't quite got there.

Now I am finding my focus again. It's just two and a bit weeks until we head to Africa and I would like to throw myself hook, line and sinker back into the parent blogging community and ask for help.

Here's what we are up to:

In loving memory: our visit to to South Africa


Please can you help?

Here are three ways you can:

You could donate

I still need sponsorship to help fund our journey. I've been carbooting (is that a word?) and eBaying (that can't be) like mad to pull money in and am hugely grateful for donations from all the kind individuals who have contributed so far.

But I wouldn't be giving it my best shot if I didn't make one last shout out for support. Thank you so very much if you can donate, it really is appreciated. There is no minimum amount, every little helps. Thank you so much.

You could send me some old clothes

Seriously. Do you have any old stuff that you just don't need any more that you have been thinking about recycling but not got around to it? I will very happily take it off your hands -- whether it's for kids or adults. Please email me (linaitchison at gmail dot com) if you would like to send me even just a single garment, and I will send you my address. I can make use of these, taking some over to Africa, as we can leave the clothes behind when we come home, or by taking them to Cash for Clothes before we go to help fund the charity. If you email me, I can explain more. Thank you!

You could buy a copy of my book on freelance writing at a knock down price

I'm selling a small number of my book, called Freelance writing, straightforward advice from a woman who knows (such a modest title, I know, I know) for just £7 to include postage and packaging. The RRP is £9.99. If you would like one, please click on the donate button and when you get through to the actual donation part, add a little note that you would like one of the books. Or please email me after you have donated to let me know you would like a book -- thanks a million.

It would also be wonderful if you could look out for my posts when I'm back and help share the children's stories.

Thanks so much for reading.

Getting on

Last night I dreamed me and Neil were renewing our wedding vows. There was a lot of kissing, laughing and cuddling and our girls were with us, smiling and so proud.

As I began to wake, I fidgeted a little in bed and reached out my arm to where Neil would lie. That brought me back to reality with a jolt and I cried my eyes out.

I dream about Neil regularly. There was a massive difference though this morning as after my tears I smiled and thought about how much we loved each other. So you could say my dream was a comfort, rather than something that only made me sad.

My wonderful friend Kim has always told me that when we dream about someone we love who is no longer with us, that means they are still here and want to remind us of that. She says Neil is telling me he still loves me and right now I choose to believe her.

In general things are getting better. I have had pneumonia and whooping cough and had to have tests on my heart, these proved to be absolutely fine so that was one hell of a relief. With a period of prolonged illness and the repeated experience of sitting in medical waiting rooms, there was a lot of time for memory and reflection -- much of it all-too painful.

But on a hugely positive note, my flashbacks have lessened.

People have been telling me for months that the "first" of everything after someone dies is the hardest -- a birthday, a Christmas, anniversaries and of course the day your loved one was taken from you. But I wasn't prepared for how much I would be bowled over by being ill. The reality of being a single parent and having to get on with all that involves really hit home, as well as the absence of a "rock" who has been there for so long, offering unconditional support emotionally and practically.

Then my girls went on a school trip for a week so I had the opportunity to head for Wales with my mum and our dog and I slept for days. I must have so needed it.

I feel like I have turned a corner, having recently spoken directly to a doctor who caused us untold anguish. When he apologised to me, I felt 10 feet tall, I came out of his room and said under my breath to Neil "I told him Darling, I bloody told him." That's after five pages of apology from the hospital, the spark for so many of my flashbacks.

I've also organised for a bench to be sited in a place that holds lots of precious memories for our family, with a plaque saying 'In loving memory.' This also brings me some comfort.

Day to day I am getting on, I have had a first session with a grief counsellor through an emotional well-being service and she couldn't get a word in. She said that it was very early days for me, that I am "incredibly self-aware" and that I am doing "amazingly well." I don't mind admitting that is good to hear.

I cried my eyes out in her session and when I asked her what she wanted to say to me as well as listen, she said: "What can anyone say to someone who has lost the love of their life?"

Then she told me it was okay for me to be happy again.

Whaoh, that's the big one. I think I'll get back to you on that x

Thanks for reading.

In loving memory: Our visit to South Africa

Thabo, Believe and Tholiwe. Photo from 2012 Link 4 Life project. 

In July this year, Melissa, Emily and I are heading for a remote area of South Africa, called Bush Buck Ridge. While there, we will meet children orphaned by HIV and Aids and help care workers who look after them day to day.

The reason behind our visit is uncomplicated -- to meet the children, be at their side and help tell their stories.

This is designed to be a lasting connection. There's no big charity fanfare, no massive building project, no international marketing effort, just the prospect of helping. You can imagine how much that appeals.

Each day, we will be guided by a team of care workers to let us know what needs doing and we will get on with it.

Experience of previous visits has shown that this is likely to be helping feed the children or washing clothes, plus a load of other straightforward tasks to lighten their day.

Me, Melissa and Emily have also been set the task of listening to a child's story and helping share it. It's as simple as that. And as someone whose life has been largely taken up by telling stories, it's a role I relish.

I'm doing this in Neil's memory. I hope that one day, maybe not this year, but one day, there will be an element of our involvement, that I can put his name to as a lasting reminder for all to see of his decency and compassion. It's such a cliche, but I know he would like that.

We're members of a 12-strong group travelling to meet and help the children, under a project called Link 4 Life, helping charities called Hands at Work, Mercy Air and the Baby Bear Project.

Our stay comes days apart from a visit from my children's school, where older pupils, plus teachers, will also contribute.

Fellow team members have been so very kind to us, assuring us that our presence is special and that we will bring with us an empathy for children who have lost a parent. That makes me feel useful.
 
There's also an opportunity to visit a hospital in one of the country's poorest areas, where babies are now sent home clothed, rather than in newspaper, thanks to a group of knitters, some of whom are just streets from where we live. This is the Baby Bear project.

I find it amazing that such an unassuming, modest group of people should make such a difference and honoured to be allowed to walk alongside them. It's hard for me to imagine that mothers have so little that their newborns are sent away from hospital wrapped in newspaper but amazing to consider women in my village are easing this burden.

There's a yearly commitment for contact and support with the people in this part of South Africa from the Staffordshire villages of Great Wyrley and Cheslyn Hay. Some people come from our local churches, where we have been sporadic visitors over the years, some from business and some from schools. The aim is to forge longstanding links that will build to bring fruitful relationships.

Already young people from Cheslyn Hay and Great Wyrley are spending longer periods in the community to complete much-needed practical tasks.

Neil and me first heard of Link 4 Life in 2009. We were both interested in taking part, as we worked together from our offices on voluntary publicity material for local media about the project, led by local vicar Richard Westwood.

We looked forward to a day when our girls may be able to join a school group and chatted about how realistic a possibility either or both of us getting involved could be.

Richard was always hugely grateful for our help with fundraising and publicity and I don't think there was ever a time we spoke that he didn't tell me that. As non church-goers our paths didn't cross that often but we kept in touch to follow the progress of Link 4 Life.

And then, in the blur of all that has happened, Richard became a remarkable source of support -- for Neil, me and our wider family.

He married us in January and just months later, led Neil's funeral.

He spent time with us in our most desperate hours in a hospital room.

I can't remember when exactly the idea was mooted that the three of us should join Link 4 Life this year, but it was Melissa's idea and we have stuck at it.

So this has become our "thing", a focus for us to work towards. In our grief and shock, our commitment hasn't lessened. I'm not as far forward as I would have liked to have been with officialdom to do with the visit but I'm catching up now the best I can.


How you can help

I would like to ask for your help if I may, and this is connected with fundraising towards our trip. My daughters have plans of their own with the help of classmates and teachers.

I have £637 from the wonderful journalists' community at JournoBiz and we even went and packed bags at Asda. (I never thought I'd see the day.) We lasted at least an hour.

But now I need to step up my fundraising efforts. I'm going to self publish a book of short stories if enough people are interested, to help, and hope to tap into my lovely works colleagues' expertise for more ideas on generating some cash. The stories are a bit rude (as in earthy humour) and have been received well.

In the meantime, I have set up a donate button on this blog. I know that times are very, very tough for people, but if you would like to help me do this in Neil's memory, I would really appreciate any amount, however small, you can send my way.

You just need to click on the donate button and you will be taken through how to make a secure payment.

The button is here and also in the top right of the blog:

If you'd like to help but would prefer to send me a cheque, please email me linaitchison@gmail[dot]com and I will reply with my postal address.

Please also email me if you are interested in knowing more about the form my book of short stories will take.

This will be put towards airfare for the three of us. Should there be enough funds raised, more money will go towards local feeding programmes.

Thank you for reading.

Sometimes it's okay not to be okay

I can't remember which kind soul once told me this.

It was in the days I was blogging about mental health, having worked with a branch of Mind.

Now I have found myself reflecting on this simple yet striking sentiment many times in recent weeks.

I have been having the most vile flashbacks to things that happened to our family and feeling overwhelmed by sadness. My memory continues to be very problematic. This has made my usual daily routine of writing and looking after customers, almost impossible.

Being keen to continue at work has created more problems than it has solved. It's a bitter pill to swallow.

I so want to wave a magic wand, to feel okay, to live life to the fullest for me, my children and my lovely Neil, and find it very hard to accept that it's not possible. So I end up beating myself up for being useless. This has to stop.

Last night as I lay in bed, memories cascaded through my mind. But they were happy memories. This has to be a step forward. I have been trapped a little in bad, bad memories, genuine, aching trauma that my mind and body has struggled to process.

After an initial burst of getting on with things at work and declaring I was now going to be 'braver' in business as a result of my situation, I have come to a grinding halt.

Unfortunately (or fortunately, I can't make my mind up which) medical professionals agree. I am clear and they are clear, that I'm not depressed, but I continue to feel anxious and invent negative scenarios purely through stress. My GP sent me to an emotional well-being service (lovely name, so much better than mental health) where I burst into tears at the start of the session, when the question "Who do you live with?" was the trigger. It didn't take long to be told I was suffering from Post Traumatic Stress Disorder.

People who care about me asked what happened next and how this will be treated. It makes me laugh that actually I can't remember! I think I'm on a waiting list.

Meanwhile I fight every urge that says PTSD is a load of nonsense and urges me to get a grip.

I've also been diagnosed with Type 2 diabetes, following in the footsteps of close family members. My high blood sugar levels have affected how tired I have been feeling and I'm on medication.

This makes me feel crap too - I have been overweight for far too long. But the tablets are working and I am starting to feel more alert. The connotations of laziness and greed that lie behind a Type 2 diabetes diagnosis inevitably play on my mind but I have to be positive and optimistic about my health. For me and my girls it's imperative, now more than ever, that I continue to lose weight (I am a good two and a half stone lighter than I have been.) I don't want to stay on the medication long term and have already significantly lowered my blood sugar through a change in eating habits.

So often I have dished out advice, to family and friends that they need to be kind to themselves.
I need to do the same.

I've been told everything I'm doing, including work and going on holiday is a distraction and that I need to grieve properly. "Shut the door and cry," were the exact words.

So that's what I have been doing. My head feels like it's full of candy floss. 

I've also booked some complementary therapy. What would I say to a friend who has been through all I have? I'd say give yourself a break and stop judging yourself so harshly. Give yourself permission to take time to heal.

Grief is something that has to be let in properly to then be let out, this I try to understand. When I think about what I'm still seeing, I have to acknowledge overcoming that needs strength. But that strength means being strong enough not to pretend to be okay. My neighbour tells me even being upright when faced with such pain is an incredible achievement. 

I need to start to believe her.

It's okay to not 'get a grip' or 'get on with things' or pull myself together sometimes. I am doing my best and that will have to be good enough.

Thanks for reading. 

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.

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’ 13^th 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.

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.