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.

  

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. 

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.

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.