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.

'Not a single word of kindness': A letter to a hospital

I was very interested today to hear of a report from Macmillan which reveals cancer patients in the UK aren't treated with the greatest of compassion and are denied "a good death." 

As I approach the second anniversary of losing our beloved Neil, I still carry the trauma of what happened in his last days in Wolverhampton's New Cross Hospital. 

Compassion was sorely lacking. 

I was commissioned to write about this some months ago for a national newspaper as a case study in a bigger piece about NHS failings. That piece never saw the light of day. So here I am getting it out there.  

My husband Neil died in May 2012 of melanoma, six weeks after his 44th birthday.

The hospital concerned has told us they are “deeply sorry” for some aspects of Neil’s care and in response to others, an action plan would be developed. In short, things were to change because of our experience and my complaint. I felt compelled to tell our story as too often now I’m being told it’s typical and I wanted to help prevent similar distress for other families in the future. Today's report from Macmillan tells us what too many people already knew.

Ours is not a headline-grabbing case of massive negligence, rather, to me and my family, a heartbreaking account of how so many basic things can be overlooked.

In writing a complaint letter to the hospital, I wanted to call for better training for staff on general medical wards so that other families are less likely to suffer as we did. To be honest with you I also want to tell this story as it hurts so much and I'm still getting flashbacks. 

I asked management to explain what training staff in general wards underwent to meet the needs of terminally ill patients and urged them to consider investing in increased/improved training.

I received five pages of apology.  

These are points, condensed but also added to a little here, that I raised:

Days before Neil died: 

• Despite being admitted because of dehydration, he was refused a drink of water as we waited in the Emergency Assessment unit. He was given a drip sometime after we arrived (I don't recall how long this was, but certainly more than an hour) only to have it removed to stop porters, who broke into an argument in front of us, refusing to take him for an X ray. They rowed about this between themselves and didn't say or do anything to acknowledge our presence as the subject of their disagreement over whether you could take someone to an X ray with a drip attached. I watched them in silence. It would be up to a doctor whether Neil could have a drink. Every time I asked when the doctor would see Neil I was told: "Not a clue." Five hours later, at around 9pm, we saw one. I clearly remember wondering what the point of being there was and to this day, I have no answer.

• Once he was on the ward, and this is an image that haunts me, Neil lay motionless half way down his bed, his face and clothes smeared with food, while plates piled up still stacked with uneaten meals on his over-bed table. I hated the way the nurses referred to Neil, for example when I  asked why he wasn't eating, I was told: 'He likes his independence too much.' To me, hearing a young man  of such fierce intellect spoken of in such patronising terms, as if he was a wilful elderly patient or child, was hard to bear. I pulled the curtains around his bed to stop other patients staring at him. I wanted him to have privacy and dignity, both of which were evidently lacking. A nurse immediately drew them back.

• We were laughed at when we attempted to report his Kindle missing from his bedside and asked if it could have been stolen. In everything our family has gone through in recent months, the memory of a nurse laughing at me while my husband lay dying is one of the most painful. I couldn’t believe how nurses were interacting with me, with a sort of ‘enforced jollity’ hours after being told my husband was so desperately ill. I started sobbing that I wanted to take him home that minute. I'll let you imagine how we all felt that Neil's Kindle, a thoughtful birthday present from some of our friends, had been taken from his bedside in his last days. Later, as I aired my concerns about Neil's care to a senior member of staff, he admonished me for bringing in valuables. 

• Neil was refused a wash and told he could have a shower in the morning. In the morning he didn't get a shower as nurses didn't have time. Me and one of my 13-year-old daughters spent an hour with Neil who could barely stand, in the ward bathroom, we were in a very distressed state but wanted to do our best for Neil to fulfil a basic need that had been refused. My daughter insisted she wanted to help, I was inconsolable that she would have this troubling episode as a memory so close to losing her dad.

• Later a nurse came and said that they would have given him a wash but they were on changeover. If someone had explained this to me in a professional and caring manner then maybe it wouldn’t have been such a distressing turn of events but they didn’t. Instead I had been dismissed and made to feel unreasonable for requesting the most basic care.

• A nurse in the emergency admissions unit met our repeated questions about what was happening with the answer 'not a clue'. Days later we requested a wheelchair so we could take him out of bed, the response was “Who’s Neil?”

• He fell from his bed and no warnings about his limited mobility or danger of falling were displayed. What do you think I would like to say about that?

• On another visit we were told that nursing staff had been unable to give Neil his prescribed medication as his notes couldn’t be found. As one of those medicines was morphine to control his pain, this was another cause of concern.

• Some days (most I think in this short period, though my memory is blurred) I wasn't allowed to be with him at any other time than in visiting times and should have been advised of flexible times. This hurts so much, I think so often of that lost time with him and how I wasn't there just to hold his hand. I did ask for longer with him, out of normal visiting times but wasn't allowed before his last two days when we were told he would die in the ambulance if he was moved to St Giles Hospice.

• With no staff in view, after giving him a wash, I said goodbye one night to Neil, an elderly man two beds down started shouting at me for help in finding something. I said I was sorry I didn’t work there. He became very angry and shouted at me some more. I was upset there were no nurses to look after someone else who was now berating me for not doing their job – an utterly chaotic and distressing experience.

• When I took up all the above points with a ward manager, I was told there were patients “much more ill than Neil.”

• Another scan we were told would be booked ASAP never happened. Four days later a forgotten request was found in Neil’s notes, despite assurances when I attempted to check on progress that efforts were being made to move him up the list. By this time, we were told there was no point in having more tests, Neil's condition had deteriorated to the extent he was going to die soon. I remember a conversation with a junior doctor I hadn't met before around this time whose words went along the lines of "I am sorry your husband has cancer." Baffled by his response to my questions, I replied I'd known a while.  

• A palliative care team wasn’t informed of Neil’s presence in the hospital until 48 hours before he died, I felt so very strongly about the nurses’ dismissive attitude and the fact that we weren’t afforded a single word of kindness before Neil was transferred to the specialist cancer ward where he died after spending five days on a general medical ward.

• Raising the point of how we were spoken to, I said in my letter to the hospital:  “You may not find this a significant complaint but I can assure you that faced with the anguish of Neil’s condition such dismissive treatment from an overworked nurse cut like a knife. In hindsight, knowing he had days to live, I am baffled how anyone working in such an environment could find this communication acceptable.” 

• During our five-hour wait to see the doctor on the night of Neil’s admission, an elderly woman patient came and took Neil’s blanket, accusing him of stealing it from her. There was not a member of staff in sight to come to our aid in the face of a clearly agitated woman and I was alarmed by how she was scaring Neil. I told her to go away and leave us alone.

• When Neil returned from x-ray after being admitted, I couldn’t find his drip. I found a nurse to tell and she said she had taken it off. I was worried about how long he had been without it but got no further explanation. I asked for it to be refitted and some 20 minutes later it was. Had I not have left Neil to go and find a nurse and request the drip was returned, I dread to think when this would have been refitted. I considered keeping a patient hydrated a basic part of care and was upset that this was not being achieved – especially when this was the reason Neil had been sent to hospital.

• It is a huge source of grief to me that Neil’s last days were filled with such chaos. I feel so much grief that we didn’t continue to look after Neil at home instead of him enduring what we did.

My complaint:

I wrote seven pages of complaint to New Cross Hospital, Wolverhampton around a month after Neil died when I could find the words. After a month my complaint hadn't been acknowledged so I rang and was told the letter must have got lost in the post. Later I was told more time was needed. The final response which came two months after I made it was five pages of apology which sought to reassure me my complaints were taken seriously and improved training/communication was under way. Reading the answer to the points I raised sent me into a panic attack - the second since I was given the news Neil would die within 48 hours.

The hospital’s response: (Signed by Kevin Stringer, Chief Financial Officer on behalf of David Loughton CBE, Chief Exec Royal Wolverhampton Hospitals NHS Trust )

An investigation was carried out.

On our care in EAU:

They acknowledge the way we were spoken to was unacceptable and apologise. They outline how requests for information should be met with respect and courtesy. They say we should have been treated with more sensitivity.

They say my raising questions about training was appropriate and outline the training they undertake and add that the EAU isn’t an ideal place for terminally ill patients. They say staff now work closely with the palliative care team to provide necessary support. (I think but can’t be sure this means a result of my letter which is a comfort.)

The missing scan request

They say it is not clear if the request was ever received.

Our experience with the drip

They say fluids should not have been stopped and are ‘deeply sorry’ for what happened, staff have been spoken to.

They say our experience was below standard and my concerns are being discussed further at a team governance (quality) meeting in order to ensure protocols are in place to prevent a recurrence.  

Neil’s fall:

They are “extremely sorry” he fell while in their care.

They apologise that no advisory signs were displayed over Neil’s bed.

All staff have been reminded of the importance of such signs

Visiting times

They apologise these weren’t extended for me

Lack of basic care and hygiene

They apologise that the appropriate care and attention required was lacking. All staff have been reminded of the importance of undertaking comfort rounds

They apologise that staff reaction to a request for a wash led me to take matters into my own hands

Loss of kindle

They apologised for the poor experience we experienced

Poor communication

They are sorry I felt we weren’t given enough information and also wish to apologise that I felt staff didn’t offer appropriate support at this extremely difficult time and at times they behaved inappropriately, adding to my distress.

My experience will be shared with relevant staff at team meetings and directorate governance forums. An action plan will be developed in response to my experiences.

Conclusion:

They were very concerned to read of our experiences.

“Please let me say how sorry I am for the additional upset caused to you and your family at this time. I hope you are reassured that your comments have been taken on board by the nursing team and group managers.”

Important note:

The care Neil received in the specialist Deansley cancer ward at New Cross was amazing from lovely, lovely people. He was there for five weeks in one go at one time, and he eventually died there. St Giles Hospice were also phenomenal through their home care and counselling services and a bed was ready for him, but he never made it. Perhaps if the palliative care team at New Cross had been told earlier we were there, who knows, he may have. 

Macmillan blew us away, helping Neil walk so he could accompany me down the aisle at our wedding. A happier memory is how the nurses and doctors at Deansley stood and clapped as he inched his way down the corridor with a walking frame after weeks of not being allowed to move and losing all mobility, thanks to his remarkable determination and the unswerving commitment and patience of the Macmillan physios. His consultant Dr Simon Grummett never treated Neil with anything less than complete respect, care and dignity, his support for us and his hopes of helping Neil live longer through innovative treatment brought us great comfort.

  

So what happened in Africa?

It has been a long time since I have blogged here. There just haven't been enough hours in the day. But I have been itching to share what we got up to in Africa, how it went, the difference it has made to our family and to say another massive thank you to everyone who helped us get there with their kind donations.

In short, since losing Neil, I have never felt so alive as the time we spent with our fellow volunteers and the youngsters we met. Here's our story:


Watching my daughter Melissa set off to walk four miles carrying a bed for a nine-year-old orphaned African girl who slept among rats on the floor, I cried big fat tears of pride.

We were doing this in Neil's memory. I hope that 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.
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 mind-blowing to consider women in my village are easing this burden.

Melissa trekked for hours along a dirt path to deliver the bed we had built together, while me and her sister Emily carried another to its new, less faraway but equally dilapidated home.

We were in a remote South African community fittingly called Share, in a region called Bush Buck Ridge.

Our mission was to start to help some of the continent’s poorest children. These youngsters had lost one or both parents to HIV and Aids or were devastated by a more sudden death.

Now they lived with their grandmothers, themselves often child-like through the effects of trauma, or a toxic combination of no education and deteriorating faculties.

As young brothers and sisters woke to the sight of their parents’ crudely etched graves in the heat and dust outside their bedroom window, facing hours of chores, there was little time to be a child.

We were helping a dedicated team of local women offer the children hope, through food, education and healthcare, with a small charity called Hands atWork.

The amazing women caring for these children – bringing them one simple meal a day -- and attempting to mend fragmented families had very few material possessions. But driven by a deep faith, they brought love by the bucket load. Each day their voices filled the air with soulful songs of celebration, giving thanks for the community.

The tiny British charity taking us there is called Link4Life – inspired by an aim of forging long-standing meaningful, relationships, working together over a lifetime to bring real improvements.

They asked us to put together beds for 12 children of the 50 they are able to help from their centre, and to help build a ‘long drop’ toilet so little girls and boys no longer had to crouch behind the centre’s walls.

We were part of a 14-strong team throwing ourselves into the tasks with aplomb. Colleagues from Link4Life had already painted the centre, set up a fence and embedded colourful tyres as play equipment.

In these still bleak surroundings, I was upset by the scale of deprivation. Yet my wise fellow team members could see how things were improving and thankful for the steps taken so far.

Our job was to cuddle the children, to play with them and show them love. We were not there to pity or point and say: “Oh how poor they are.”

There was no international marketing fanfare to throw Western money at these children  and impose our own solutions, we were there to listen to what they genuinely needed. Each day we listened and got on with it.

But they were also helping mend us.

My tears came not only from pride but from waves of understanding and grief. My beautiful brave girls getting blisters carrying the beds and laughing with the children in the playground, understood their heartbreak. They had lost their dad, my gorgeous husband Neil, just over a year before we found ourselves in Share.

The care workers and our companions from our local village community of Cheslyn Hay in Staffordshire told us they would be thinking and praying for us too, that we needed their love.

Having spent months attempting to come to terms with our grief and facing the future without Neil, to meet so many bereaved children and see the pain in their eyes was a cathartic and humbling experience, especially when their care workers recognised the same agony in us. Yet as we witnessed the difference we were making, since losing Neil, I had never felt so alive.

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

As the three of us made a hash of sweeping a grandmother’s yard during a home visit, he would have laughed fondly as she tutted and told us to do it again.

We also had the opportunity to visit a hospital in Durban, 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.

As I helped hand over freshly knitted clothes to women in the last stages or of pregnancy or hours after they gave birth, I sat and chatted with a young mum of newborn twins. Rosie, 25, from a nearby village, who told me she would name one of her daughters after me.

Again, the tears flowed. This time I was crying with joy.


At a banana plantation where an international team of nurses ran a basic health clinic, I held a young girl’s hand while she underwent traumatic treatment to Impetigo on her head.

The festering lesions on Virginia’s scalp remained agonising as her aunt had refused to give her the medication needed. Now the sores were so serious, they were being cut out with a blade. There was little pain relief. As I sat and held her fingers in mine, urging her to squeeze my hand to take the pain away, she was so unused to anyone showing her such basic care, she didn’t know what to do and her wrists remained limp, her hands dangling as she screamed in pain. I will never forget Virginia, I ran to our van to get her some boiled sweets so she could somehow benefit from a sugar rush and take her mind off the stinging blade.

I’m not a religious person but could not fail to be moved by the dedication of those who used their beliefs as a reason to roll up their sleeves to see their hands at work among such need. Nobody was preaching,just getting on and helping in desperate circumstances. Perhaps the most moving part of our visit was spending a Sunday morning at a church built from sticks, with fabric oddments adorning the makeshift walls as underfed children in their best dresses sang hymns beautifully. Outside they played with toys fashioned from bits of old wire. It was heartbreaking but uplifting at the same time – you couldn’t help but be in awe of these children’s spirit.

My colleagues from the UK church said they felt God was there that morning. I couldn’t disagree, but Neil was there too I told them. Now, as I reflect on our time in Africa, my tears have given way to renewed commitment to help girls like Virginia.  There has been guilt since we returned as we squabble over which pudding to buy in the supermarket or which reality TV shocker we are going to settle down in front of. We don’t know we are born.

Still, my tears have given way to smiles as I think of the children we helped, including my own and a new little girl called Linda. 

We have a link for life.

How you can help

The Baby Bear project is looking for more knitters. Please leave a comment here if you can spare the time to get involved and possibly help clothe newborn babies or email me on linaitchison(at)gmail.com.

A direct debit of £15 a month feeds one child at Share. Please visit www.edscouriers.co.uk/ for more information. 

I've also included a Donate button in the top right hand corner of this blog to help me send money in a monthly direct debit. 

 

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.

What not to say to a bereaved family

A couple of weeks back I wrote a piece for Parentdish on this very subject:

What not to say to a bereaved family.

It was something I really wanted to write about and it was quite a cathartic process. My friend Helen read the piece before I sent it and said that I sounded very angry.

I think that's a key aspect of grief that can be overlooked. People think you will be sad, despairing, heartbroken you name it, and of course you are, but rage can be equally overpowering.

Think about it. Perhaps like Lisa, whom I quoted in the article, you lose your husband 24 hours after learning he is ill, you are 35 years old and you have two young children.

Then someone tells you: "I know how you feel, my rabbit just died."

I think you'd be pretty angry too.

It's a puzzle to me as to why we don't talk about grief much. I'm grateful for all the kind words and concern people have shown me over the past year or so. I'm sorry I sound so angry.

But I'm getting there.

Thanks 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.

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’ 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.

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.