The Voice

I've found this quite hard to write. I write it, go back, rewrite, delete, then start all over again. 

It might be due to the opening of The Door. 

It could be because it sounds like a cry for help. But even though what I'm writing may sound that way, it isn't really. It's all part of it, part of the process. All part of the task ahead and the current state of play. I do feel that I need to write this about the following though; I am not writing this to fish for compliments, for friends and family to say I'm doing amazing and not to doubt myself. Nor am I writing as some sort of ego trip or a longing for affirmation that would validate my actions. I am also not writing this for some great outpouring of sympathy. I am acutely aware that I am not the first, or last, person to be going through this or the only one facing trials in life. Although it's about me, it's not really for me. This blog has never been about that. I don't want to be The Number One Dad singular. I would much prefer to be Back Up Dad to The Number One Mam. 

I am writing this because I know Aden and Hallie will read this one day. It is my sincere hope that they will read it and understand why I behaved in such a manner and why I made the decisions I made and will make in the future. Those times when I was stressed and lost my temper. Those times in the evening when I was tired and frustrated and snapped at them. Those times when I got it wrong. Those times, and there are many, when I just didn't know what to do. 

If truth be told I struggle with practically everything. And I struggle on a daily basis. On the outside it looks like I'm doing a good job and I'm coping admirably, but I'm plagued with doubt and worry, especially when it comes to the children. I feel I snap a lot. I feel that I say no too often. I feel incredibly guilty when I shout at them or get upset about something they have or haven't done even though I know that parents up and down the land, since the beginning of time, have gone through or are going through the exactly same thing. Children test barriers often and regularly. It's the nature of it. I just feel hopeless sometimes, most times. 

I wonder constantly if Laura would have done this or that even though I know that that in itself is holding my actions to a high, near impossible, standard. I've said it before and I'll say it again, Laura was a far better parent than I'll ever be. I tend to hold my annoyance more than Laura did. She was patient and understanding, I'm having to learn to be that. If they do something wrong my automatic response is that I want them to learn something from it but then I stupidly go about that lesson in the completely wrong way. I know this for a fact. I get it wrong because I'm approaching the whole scenario like an adult instead of a child. I have found that looking at it from their point of view is better, however, that thinking totally escapes me in the heat of the moment and I only think of it later. And mostly when it's too late. Everything is easier with the power of hindsight. 

I worry about the future. Their future. Will they be okay without the balance that Laura would have provided? I worry about my ability to be both parents. I don't even know if that's a feasible goal. 

I worry about my own health and about always being there for them. I've never worried about diet and exercise as much as I do now. I have never been so aware of my age and mortality as I am now. And even though I worry about it, ironically I don't do much to change it. I get into a panic about this regularly. 

I worry that I should talk to them about Laura more than we do. I worry that they are bottling up a lot of pain. I wonder what they are thinking. I know, writing this, makes me feel awful, as I should actually know what they are thinking or at least have a good idea. But in truth, I don't. We talk about Laura often, we mention her often, we look at her phone every day for memories but we don't talk about how they feel about it. I just don't want to upset them. They have gotten upset in the past so I don't want to do that to them again. Should I wait and let it run its course or should I meet it head on or should I subtly broach the subject? Until now I have been content to let them come to me and watch for any signs but I am worried that they are bottling too much up. What if they are afraid to come to me as they think they'll upset me? It can't be a good thing. We are in completely uncharted territory and the guide says that everyone reacts differently. So what exactly am I meant to do? 

All these fears are very real. They keep me awake at night. They sap my motivation. They chip away at my will power. There are good days and bad. On those bad days, and nights, I listen to The Voice.

The Voice lives in my head. The Voice is my own. But it is also not. It gives me advice and repeats everything that everyone is saying and thinking. All those supportive and helpful things. The Voice can be wise and assured. The Voice tells me in the midnight hour, whilst the kids are sleeping, that I needn't stress, that I shouldn't worry, that everything will be okay if I stick to my instincts. The Voice tells me that stressing about details and how I'm doing overall will help no one. The Voice echoes exactly what everyone is saying, that it's an incredibly tough task and I'm doing just fine. The Voice always gives me real advice that seems to point that things will be okay. But as with everything, there is an opposite force. The Negativity. The Negativity doesn't have a voice. It just is. It's background noise. A niggle. A worry. It chips in opinion like a heckler. I want to ignore it but I can't. It lingers. Even though it doesn't have a Voice, it doesn't make it any less pertinent or diminish its presence in any way. Even in the darkness it casts a shadow. 

There are times when I try to bend my will to make that voice sound like Laura. It never works. It is probably just as well. She'd probably tell me off for doubting myself and remind me that I have a job to do. However I do listen to The Voice and it calms me. I concentrate on it and try to block everything else out. It is difficult. The negativity is a creeping sense of panic, of anxiety and when it threatens to engulf me in the middle of the night or numb me in the loneliness of the day, and those overwhelming times when I miss Laura most, The Voice manages to lull me to sleep or motivates me into action. I've recently realised that The Voice isn't one person. It's you. It's all of you. It's what you said in passing. It's a note on messenger. It's a kind word. It's a gesture. A smile. A hello. 

Thank you for giving your kindness to The Voice. 

Precious Time

I didn't like my job. There I've said it. I did like it initially and probably for about half the 27 years I did it I did enjoy it. There were times in the other half that it was okay, times when I worked with really good people but generally I didn't enjoy it. Working 6 days a week, early starts, late finishes, 14 hour shifts (also known as AFD, All F*cking Day), rude customers, strict licencing laws, unachievable bonus system, shit wages, treated like a suspect if there were (explainable) stock shortages yet never rewarded for all the surpluses, no real work/balance, I could go on as the list is long. But, as usual, the great disclaimer, it paid the bills. 

I remember when the slide into my dislike happened. It was about 9 years ago. And it was when Aden was born. 

At first shift work is a bonus. I managed my shifts around Aden and it saved us a fortune on childcare and also meant I could have some quality time with him. The ultimate downside, however, is that in my profession I had to work weekends. This was compounded even further when Hallie arrived two years later and Aden started nursery. By the time both of them were at school/nursery my time with them was limited to the occasional evening and the one afternoon of the weekend. Even those evenings after you consider feeding them and getting them ready for bed, coupled with my own tiredness, it isn't that much time at all. I missed so much. Laura often attended their friends birthday parties and any special occasions without me as I "had to go to work". 

It annoys me on many levels to this day. I/we missed so many things together that other families did regularly. Going away for the day or weekend or simply making plans that didn't involve me either saying I couldn't go or do it, or keeping an eye on the clock when I was able to. I missed all that due to my job. Even when I said it paid the bills, it did. Just. Considering the job I was doing and the responsibility it entailed, the wage wasn't great. So I lament the fact that I sacrificed everything for a job that fundamentally didn't pay me well, had zero work/life balance and I basically didn't enjoy. It became even more apparent when Covid resulted in the entire licence trade going into lockdown. Lockdown, for me, was actually a blessing. Yes, I had the time to be more involved with the kids, from home-schooling to teaching them how to ride a bike but it was also about that time when Laura was first diagnosed with Primary Breast Cancer. So not only did it dawn on me how much time with the kids I had actually missed out on but it also, with Laura's diagnosis, brought into sharp focus how much more important family life is and how precious that time is.

The one thing that really gets me now is that Laura spent so much time with them in my absence and now all those memories have gone. I don't just mean the days away and occasions that there are pictures and memories of and details that others can supply, I mean the actual detail. Laura had a great memory for detail. She will have remembered all their firsts, silly little things that happened and things unique to them. She would have shared these things with me but I didn't bank them because you don't really think that way. I just presumed that Laura would always be here and therefore all her memories and stories would be intact too. While it could be argued that it's not worth getting upset about, that I need to concentrate on the future and making new memories, I still feel that loss acutely. There's a the wider issue to that loss. When my parents passed I wished I asked more questions regarding their history, our history. With Laura's passing and the subsequent loss of her memories, stories and thoughts, I feel a huge emptiness coupled with bitter disappointment as they cannot be replaced.

So why didn't I change things? I knew the job wasn't conducive to family life, so why didn't I do something about it? Well, I was too lazy and afraid. I was stuck in my ways. We used to talk about it often. Laura would urge me to do it and constantly remind me that it was only me that could do it, that it's not going to fall into my lap. We very rarely had crossed words but when we did it was always about my job. It wasn't just the kids I didn't see much of. I knew of some friends who have actually left the trade and it was the best thing they had every done. Their family life was now rich and full. But I didn't. I'd look for a bit, consider the options and promptly slip back into my old ways.

So I wish I had been braver. I missed too much. I sacrificed too much. The happiness. All those precious times and all that precious time. I can't take it back. But you can. If you feel you are missing out, then you probably are. If you feel something needs to change, then it probably does. Not everyone is in the same position. Many people with 9 to 5 jobs may not feel the same as they have weekends off and that bit of quality time but there will probably still be something that you are able to change for the better. It has been said to me on more than a few occasions recently that my situation has made some husbands and partners re-evaluate their own situation. Some wonder if their husbands will have coped as well as I have (more on this subject soon) as they don't have anything to do with finances and household administration etc,. Meanwhile husbands and partners have openly admitted to me that they don't have anything to do with certain things domestically and that they should really address this. Let me say this, I didn't either, so all of this is very new to me. Laura was this household. I said on the very first post of this blog that I'm mainly writing this for the kids and for myself but also for anyone else it may help. I said that if I helped just one person then it would be all worthwhile. This may be one of those occasions. The household dynamic doesn't always have to be the same. It isn't written in stone. Nothing will change unless you make changes.

Don't live to work. Take action. Have courage. We only get one shot at this. Your time is unbelievably precious. Remember that.

The Phone Call

 26th January 2022 4:30pm

"It's come back. I have secondary cancer. It's in my lungs and liver..."

That's all I really remember from that moment in time. 

There wasn't a dramatic slowing of time. It didn't stand still. I wasn't completely frozen in that moment. Instead, time rushed toward me. It had an end. Time for us was now completely different. 

We all know our time will come but the ending for the great majority of us is unknown. We are all here for a limited time. That is written in stone. We go through life and our day to days rarely considering that our time is finite. It's better that way. We, however, were now in a place where time had a full stop. It no longer stretched out before us full of opportunity, hopes and dreams.  For us, for Laura, time was now known to have an end.

We didn't know how long at the time. It wouldn't be for another two weeks before we found out. What we thought was a chest infection was actually the cancer returning. It had never actually gone away. She was diagnosed with Stage 4 Triple Negative Breast Cancer. Once her cancer had metastasized, spread to other parts of the body, the prognosis is bad. There is no cure. She was given a year. 

I said I would be there as soon as. I think I called my sister and told her so she could watch the children while I went to hospital. When I got to the ward she was sitting up in bed. I pulled the curtain around us and starting crying. I could barely get a word out while Laura let me cry. I can't recall our conversation. My mind won't let me remember the details. Laura, although upset, was also very calm. In her head I am sure she was already planning. She apologised for not waiting for me to be there when they gave her the results but she had to know. I think I just kept repeating how unfair this is, that she, being younger, was meant to outlive me, that she would be better equipped than me and basically how are we going to cope without her. None of this actually helped. She just kept calmly telling me that I'll be okay, while I cried my heart out. 

Laura had been in hospital for 4 days at that point and she was sent home the following day with some leaflets and websites we should look up. That was it. Left in limbo. Still in pain and now with the extra burden of her diagnosis. We heard nothing else until her appointment two weeks later. During that time Laura's health didn't improve with the medication she was given and although she was in a bad place mentally, she still managed to organise and attend Hallie's birthday party. At that party I remember her sitting to the side, pale and gaunt. No one at the party, except me and one of her best friends, knew about her diagnosis. I daresay that any of them knew about her primary cancer either, such was her determination to be business as usual. At the time I was torn between her and Hallie. Laura wanted me to focus on making her party perfect but I was constantly checking on her, even if it was just with a nod. It was only afterwards that it all truly dawned on me. She was sitting there, watching, smiling, in pain, knowing in her heart that this was possibly going to be last birthday party of Hallie's that she would see. All of those lasts Laura faced with incredible strength. Every, single, one of them. A week later she was back in hospital for another 6 days, too poorly to start her new chemo regime. She got through that too, in time for her own 40th and Aden's birthday, which followed in quick succession in March. Her determination to be there for the kids at this point was her drive. And it manifested itself in sheer willpower. 

During both these hospital stints I had been looking after the kids. Every time I picked them up from school they'd ask if Mammy was back home. They made cards and wrote messages. They slept in our bed every night and we would facetime her and send her videos and pictures. The videos and pictures kept her strength up...

26th January 2023 

...just like they do for me a year on. 

We are still here. In our bed. Every night we look at those pictures and videos. The adjustment has been made. They know Mam has gone. I am organising their first birthdays without her. It's been hard but she managed to organise these things at the worse time of her life. I'm doing my best. I'll get better at it with practice and because she left a detailed template. She inadvertently taught me what to do. I will get better at this. I know I will.

Time is on my side. 

Resolution

It's that time of year again. The time of year when the majority of us get together to see the New Year in. The time of year when we commit to making New Year Resolutions. Promises that we very rarely keep but it's okay as most of us made them after a few beers or glasses of wine. Or both. The time of year when we get together with friends and family and put all our issues, worries and cares aside and usher in a New Year, hopeful that things will change simply as it's a new year, even though the clock had basically changed at midnight to another day as it always does.

We did the very same last year. As the bells rang, Laura and myself grabbed the kids and had a family hug. We whispered that this year will be better. We had been through a lot and we were still here, stronger and better for it. I made my resolution to be less focused on work and more on family. It was basically the same promise that I had made to myself every year, but this time it was different I told myself. This time adversity had taught me that it was important to change things, that my priorities needed to be challenged and the barriers that prevented me from succeeding, overcome. Laura always told me that only I could do it, that I can't sit about waiting on change to happen to me, it was up to me to make those changes happen. Unfortunately, 27 days later, before I had the chance to action my resolution, fate took matters into its own hands. 

So when it nears the bells and you are thinking about your resolution, look at those around you. Take a second to enjoy the feeling that you have at this time of year. That love. That happiness. That hopefulness that a year new brings. Look at your family and friends. Look how happy they are. Take in the joy in their faces. It's the kind of joy generally only reserved for weddings and the birth of children. Don't make your promises lightly. Change one thing for the better. Don't sleep on the life that you have. Exercise your right to show your love and to show your appreciation of all that you have that is precious to you. Make it weird if you so desire but make it happen and make it happen regularly. Tap into that New Year feeling and bring it to as many days as you can. And for those spending New Year on your own? Know that you are loved. Love is infinite. A precious commodity that we have a boundless amount of. You aren't alone, you are just on your own for now. Feel the love of those both here and gone and raise a glass. Life is short, unpredictable and precious. You don't need me to tell you this, however you may need me to remind you. And I will remind you. Don't have regrets. Don't wait until it's too late. I did.

Love is never ending. Love will prevail.

Have a happier New Year. 

Dear Laura

Dear Laura,

It's nearly Christmas, your favourite time of the year. The time of the year when your organisational skills really shone through. You did everything. Absolutely everything. I just nodded approval and said yes when I had to.

So with that in mind, things are going okay. I've tried to be as organised as you and I genuinely believe/hope you'll think I've done a decent job. I've tried to keep up with your little traditions; Christmas movie nights with picky tea and hot chocolate, teepees in the living room, Fenwicks window (which wasn't that great), matching pyjamas, secret Santa gifts done, cards done by them for their classmates, personalised letters from Santa, panto and all that. The one thing I haven't done, much to Hallie's consternation, is the Elf On The Shelf. I simply don't have time and between you and me, I'm secretly glad. It was a pain having to do it every night in previous years and with them still in our bed it would have been too difficult to sneak downstairs every night. Instead they got a letter from Santa telling them that they didn't need the elf due to them being brave all year, so therefore they were already on the Good List. I backed this up with a couple of early gifts. It generally worked, although Hallie still says she misses Elfie every so often. 

I've had a proper go at getting the presents and I've wrapped them all up too. I must remember give myself more time to do that next year as I woefully underestimated how long it would take. When I got to the forth hour of wrapping, some gifts where more sellotape than paper and my old knees were audibly groaning (or was that me) with kneeling on the living room floor, ankle deep in discarded off cuts of paper. It'll also be strange this year as I'll know what they are getting. Sometimes I used to get as much of a surprise as they did when they opened their presents! 

I have also managed to keep Lapland a secret! I know, go me. I can't wait to see their faces. I know when you booked it, it was a massive thing for you and I wish more than anything that you were here to experience it. I've planned a little reveal the night before with a letter from Santa and an invite to come to Lapland to see him. It'll be amazing and the perfect start to their Christmas. 

Also, I know for sure you'll appreciate this, I've already booked holidays for next year! I'm taking them to Butlins at Easter break and we're going to Majorca during the summer holidays. We're going to the resort you wanted to go to apparently. I chose it before I realised that it was one that you had earmarked. The Signs were too strong to ignore. It'll be a challenge just the three of us but I'm sure we'll be okay. So yes, booked holidays, in December. I'm getting the hang of it!

The kids are doing okay. Hallie is still driving me bonkers on occasion but she gives me a drawing everyday telling me I'm the best and that she loves me. The festive season has resulted in her creativity going into overdrive. She's made crackers with gifts and jokes in (she asked Alexa for the jokes, not me you'll be glad to hear), she's made Santa, reindeers, Christmas trees etc out of airclay and Aquabeads and an endless stream of cards and drawings. Her drawings still include you of course. I'm particularly fond of a Christmas themed one of us where I was wearing some sort of top hat and you and I are eating a large ice cream cone. Aden is doing fine too. His hair is growing which I quite like. Not crazy long, more of a 90s feel to it! He spends a lot of time on screen, possibly too much but I don't think it's having a detrimental effect on him. It's easy to worry in regard to this but then I see how much of a lovely young man he is becoming. He is very considerate and polite and has a quiet assurance about him which I am very proud of. Of course there are occasions when it's not all good times. Times when, in essence, they are being children and testing the boundaries. I must admit I have lost my temper with them more than a few times, then felt that guilty way afterwards. I try not to hang on to my annoyance like I used to and I now shake it off quicker than before. I realised I was hanging onto my disappointment to teach them a lesson, that bad behaviour has consequences, but I've realised that it's a lesson that can be talked about instead of the counterproductive silent treatment. So we move on and talk about it. I'm learning. Most of the time it's me saying sorry, that it's difficult trying to be both you and me, and we hug it out. Aden has even said "I'm sorry" on occasion. Remember when he was little he wouldn't say it, even though we knew he wanted to? Well, he does now. So, we are doing okay. They are also doing well at school and the staff at school are being everything we had hoped they'd be. And more.

Me? I'm okay too. Some days are harder than others and on occasion I allow myself a little moment to miss you more. I guess I still bottle it up. As we approach Christmas, I feel I have regressed back to last summer, when I kept myself busy so I didn't have to think about how much I miss you. Last Christmas was our last Christmas and that's hard to think about, so I don't. Or I try not to. There have been many First Of Many Firsts but I guess this is the First Of Many Major Firsts. When the diagnosis was confirmed we did hope we'd get another Christmas, but that wasn't to be. So here we are. The first one without you. I'll set a place at the table for you. It will be there all day. Your place. Here. At home. With us.

Merry Christmas.

We love and miss you.

Me and the kids x

Just Listen

They say that it is good to talk but that doesn't always ring true. Sometimes, it isn't. Sometimes it's best not to. Especially when it's been a good day, things have gone well and for a day at least we forgot that we were going through this. Sometimes it's best not to mull things over and talk things through. She didn't need reminding of the inevitability of it all. Sometimes it's best to just lie there, in the dark of night, in silence, like I did every night, hoping that she had fallen asleep free from feelings of impending loss and of limited time. 

However, I doubt that ever happened. 

Every night I used to lie there awake, wishing I could take it from her, the anguish, the torment, the pain, the cancer itself. I'm 13 years older than her. She, all things being equal, should have lived longer than me. She would have been better placed to do the job. If one of us could cope without each other and raise the kids, Laura would be better equipped for the task. This isn't an admission of not being up for the task, I'm simply stating the fact that Laura would be better at it. I wanted to trade places with her so much. I'll never know how she managed day to day. I couldn't imagine how it was in her mind. We didn't talk about it. Only once did I allude to how she managed to handle it and it ended up in tears, so I didn't do it again. It was too upsetting. Why talk about things that cause hurt? I don't think I could cope with the knowledge of finite time. I couldn't bear the thought of not seeing the kids anymore; not seeing them grow up, not witnessing all the events and milestones, and not being a part of it. I simply couldn't imagine it. No one can. Try it. You can't, can you? It's too huge to comprehend. It's too hard to put yourself in that position. Hopefully you will never need to. I marvelled daily at how she managed and I still do. It was an incredible superhuman feat. So, only that one time did we talk about coping. It went unsaid. We both knew. Sometimes I feel like I could have done better or more. Something, anything to make her feel better. I don't know if I did enough but even though I don't really know how she coped, and how difficult I would have found it, I would have traded places with her in a heartbeat. 

We did speak in the beginning but even then it was hard to express ourselves clearly through the tears. Throughout the first few weeks I would lie there and hopelessly listen as she cried herself to sleep. Words were little comfort. 

She would sleep on her good side with her back to me. I couldn't put my arm around her as that was the side where she had her lymph removal operation. So most times I would gently put my hand, palm up, on her back or just hold her hand, so she knew I was there. It may seem like a futile gesture in the face of it all, but she would fall asleep and the next morning she'd wake up do it all again.

Five weeks after the Secondary diagnosis, Laura turned 40. Those five weeks had been difficult. She struggled to come to terms with the finality of her diagnosis as it was all too much comprehend. It was decided that her oldest friends would come over and help celebrate her birthday. They ordered food from our favourite Thai restaurant and they had a little night to themselves. I was upstairs with the kids and once they had fallen asleep I sat and read whilst downstairs I could hear Laura and her friends chatting and laughing. It was a beautiful and glorious sound to hear. When joy is missing it creates a void. They filled that void and more. I sat upstairs, smiling whilst I read. Smiling properly for what felt like the first time in an while. 

Then it came. The part of the evening I was dreading. The room fell silent. I knew Laura was talking and her friends were listening. I knew exactly what it meant. They let her speak and they listened. They let her pour it out. I couldn't hear a single word that was being said but what I could hear clearly was the crushing sound of five hearts breaking. 

The next day and throughout the following week, things changed. She was different; same but different. It wasn't a radical change but it was change. She took the first steps to being back in control. She made little plans. She made big plans. She started on lists. Healing her body completely wasn't an option, she accepted that, so she worked on what she could heal; she became mentally stronger. She became determined and focused. Or should I say more determined and focused. There were still nights when we would cry and the hopelessness of the situation would get to her but she focused on the here and now, and the kids happiness to get her through. 

That night with her friends was the catalyst. Although it started with Laura talking, contrary to what I've been saying about not talking, the actual key to this is listening.

We should always encourage those who feel sad, those who feel down, those who feel there is no hope, to talk. That is a given. But we also need to learn how to listen. Listen with all your heart. Listening in such situations is actually a hard thing to do. Often when listening, get side-tracked by our own opinions and we feel we need to air them there and then or we let our emotions cloud our ability to listen properly. If you know of anyone in a similar position, listening is what they want most. Laura didn't want to hear "you got this" or "stay strong", she knew that, it was exactly what she had been doing every hour of every day. What she wanted was comfort and a sense of normality. She didn't want to be treated different. She ended up using the phrase "make it weird" a lot with those friends after that night with them. She got it from a meme about making it normal to tell your friends you love them and to make it weird in doing so. It tickled her. But it also told you so much about her state of mind. 

Find new and interesting ways to express your love. Even if the weirdness makes them squirm a little. The short term discomfort will be a long term gain. Life is short and unpredictable. Find joy where you can. 

Listen. 

Make moments count.

Make your feelings known.

Make it weird.

No Hope Secondary

I'm angry. I'm not sure if this anger will ever abate. It may lessen in time but I don't think it will truly ever go. Laura was angry too. Her anger was a mixture or frustration, annoyance and helplessness. When Laura was first diagnosed everything was as it should be. She was looked after, there were issues yes, we accept that nothing ever goes smoothly as you would hope given the circumstances, but the care and attention was as you would expect and hope from the NHS. However, when the Secondary diagnosis was confirmed on January 27th, the landscape changed. 

Now, I want to state from the outset that the NHS is an incredible institution and every employee of the NHS from top to bottom have my admiration and gratitude. I'm certainly not going to go into the politics of it all but in my, our, opinion the difference between the primary and secondary diagnosis and resulting care was vast.

It felt to Laura like she was given a year and there were no alternatives truly explored and this resulted an unspoken element of resignation. There was a tectonic shift in attitude. Yes, the care is still there but nowhere near the same level. It's soul destroying. Laura did explore alternatives. It was in her nature. She read, investigated and queried alternatives. She invested time and money on independent specialist consultations. She did so many things to keep her body and mind healthy. She read books on positivity, she changed her diet, she focused on the here and now. Ultimately though, she felt like her questions weren't being answered and alternative treatments and ideas were frowned upon. She felt like she was being treated as if she'd casually Googled ideas and the first thing she read was the first thing she asked. That couldn't have been further from the truth. We understood that an NHS oncologist can't recommend anything that's completely off piste but given the situation, you'd think there would be some leeway or room for a frank, honest, personal discussion. It's not like she was asking to ditch chemotherapy and embrace a more holistic approach. She just wanted to explore all avenues because she had a lot to live for and I believe that that's something we'd all do if we were in her situation. Coming to terms with the fact that you have a year to live and then wanting to maximise that time fully took an incredible amount of mental fortitude. She certainly wasn't lacking in that department. I have said already that a positive mental attitude is essential when it came to putting up a fight in the face of such odds and despite Laura's efforts her Secondary care chipped away at her resolve and, in my opinion, eventually took its toll. 

You just have to read the stories from the FB groups she joined and the need for such groups like Make Seconds Count and Secondary1st to make you realise that this isn't just an issue experienced by Laura alone, many "Seconds" feel this way. Drugs aren't getting the go ahead. 39% of UK adults who have been diagnosed or know someone who has been, feel that the media reports about SBC are not representative, 29% feel that research and support are insufficient and 25% feel the media reports regarding SBC are inaccurate and missing key facts. YouGov statistics tell us that over a quarter of cancer patients are experiencing a delay in treatment in the Durham and Darlington region alone. And that's Primary. So you can imagine the knock on to Secondary. 

Here are just a few totally frustrating examples of what Laura had to face leading up to her passing.

On May 18th, when Laura turned up for her chemo at Bishop Auckland Hospital, they decided that she wasn't fit enough for her treatment, so they made her an appointment to go to Durham University Hospital instead to monitor her health and get further scans. We drove back to Durham and I dropped her off at 4.45pm. She sat in a little room in A&E until 9am the next morning when they eventually to moved her to a ward. Now, we understand the bed situation and the pressures on the NHS, but she could have been at home then went in the next morning. 

She had terminal cancer. 

For. Fucks. Sake. 

As well as the pleura, Laura's cancer had spread to her liver and this was causing the doctors concern. The liver is vital when processing chemo as it has the job of eliminating the toxic effects of chemo. They obviously were keeping a keen eye on the results of her blood tests. 

On Friday 27th of May, after Laura had had her bloods taken in the morning, we got woke up to a phone call at 11:30pm. They were really concerned about the results and wanted her to go into hospital immediately. Scepsis and dying where mentioned in this conversation but Laura flat out refused as they said she had to go through A&E. She told them that she'd go in but only if they could give her an appointment as she wasn't going to sit on A&E for hours, in the middle of the night, in her condition. The doctor mumbled a little and said he'd call back. She was conflicted, the doctor obviously had her worried but she didn't have the energy to be sitting in A&E, on her own, for God knows how long, so she stuck to her guns. 

Call back he did. At 2:30am. We've got an appointment for you at 5:30pm on Saturday. 

They obviously weren't that worried. There's a huge difference between "come in immediately" and "we'll see you tomorrow evening" 

All this is bad enough but when she got there on the Saturday no one knew why she was there and they sent her away. 

Now just let that sink in. 

No. One. Knew. 

Then this. 

On Wednesday 1st of June, we had an appointment with our oncologist. Laura was out of breath a lot, walked everywhere very slowly and wasn't capable of any distances. We had planned the Lion King trip to Edinburgh the next day and wanted assurances that it was OK given her condition. Now given how she felt, maybe you are thinking that time away may not be the best course of action, that rest would be better. You need to consider the over-riding element of time. She, above all, wanted quality time with us. That trumps everything. The oncologist told us it would be fine and while they were worried about her liver, the meds she had would control it. The oncologist also stressed we should take it easy whilst we were away and report if she felt any changes. When we asked about the calls regarding blood tests and hospital visits, she said the departments must have gotten their wires crossed and that she'd "look into it" so they would get the results to her before calling Laura. I knew better than to push this from the look on Laura's face. She was as fed up as I was, probably more. During this visit she had more blood tests. 

The next day, when we were on the train to Edinburgh, we got a call, they were concerned about her liver results again.  So much for looking into it and that the meds we have will control it. They asked us to go to Edinburgh Royal Infirmary as soon as we arrived to collect other meds. 

This is what we had to do:

Arrive in Edinburgh. 

Taxi to Hotel. 

Check in, put luggage on room. 

The four of us immediately take a 30 minute taxi ride to hospital. 

Hospital haven't a clue why we are there. Again. 

Call NHS. NHS Scotland don't know as NHS England haven't told them anything. 

Call our oncologist. She is not available. Left a message.

Decide to leave hospital as we have a dinner reservation and The Lion King to see. 

Just make the reservation 5 mins late. 

Go to see The Lion King. 

Decide we'll call the next morning. 

Underneath all this I was seething. Laura was too but we faced it out for the kids. Our precious time with them was being ruined. You can only imagine what they are thinking. The next morning Laura called NHS Scotland again. NHS Scotland, on hearing the situation did all the things that NHS England seemed incapable of; they contacted our hospital, asked what drugs we needed, asked where in Edinburgh we'd be that day so we could collect the prescription at a chemist as near to us as possible. Could it be that NHS Scotland know what they are doing and were showing NHS England how it is done? Yes, and sadly no. Yes, they did all those things but when we got back to the hotel that evening and opened the bag containing the meds, we found that the "weeks' worth of medication" was actually only one night's worth. They either made a mistake with the prescription or the pharmacist did. Either way, Laura used vast amounts of her dwindling willpower not to cry on front of the kids from sheer frustration. 

We got a call early the next morning. Laura had to go to hospital to get more bloods taken. By this time Laura's determination was being eroded. To make matters worse, something I had eaten had given me food poisoning, so I stayed in the hotel with the kids while a poorly Laura took herself to hospital and back. My heart, until that point, had never felt such pain as she struggled with that journey there and back. She walked miles back to the hotel as she couldn't get a taxi, not even an Uber. It was just horrendous. We got through the rest of our time away; we saw friends, we went to Edinburgh Zoo and we took the kids to the Royal Mile before we left. This is just another example of Laura's incredible willpower. She kept going. In the face of it all, she just kept going.

Ultimately it was all for nothing. On Monday, when we were back home, we got a call from the hospital, could she come on and get bloods taken? And the answer when she told them she got bloods taken on Saturday in Scotland? Sorry, we can't use those test results. 

Laura wanted so badly to make it to chemo the following Wednesday that she put everything into it. She thought, believed, hoped, that once she got to chemo that she'd start to feel better again. 

Everything she had wasn't enough. This was the start of the end. 8 days later Laura left us. 

I sit here reading this. I've written it, rewritten it and written it again. It doesn't accomplish anything. It doesn't make me feel any better. I daresay it makes anyone reading it feel anything but annoyance and sadness. It won't make the kids feel good when they eventually read this either. 

I'm sorry. 

So what is the point? Why write about it? I have always been the kind of person who doesn't waste valuable time and energy on things I cannot affect or change. This is probably the example that disproves the rule. I basically think the only reason for writing it is to give what happened the week following Edinburgh a prelude. I want to give Laura's concerns and worries a voice. The secondary care upset her. But the questions will go unanswered. 

Laura was given a year. She got 139 days. All these issues, the apparent lack of secondary care, the negativity around the chance to explore alternative treatments, the effect on her mental health. Should she have gotten more? Could she have gotten more? She was a fighter. She would never have given up. She would never leave the kids without a fight. Never. Although her body eventually made the decision for her, I wonder what would have happened if her body had been given the maximum chance to fight. I plague myself with these questions. They no longer keep me awake at night as my focus must be the children but there are times, when I sit alone, and think what if? 

What. If.