That's what she said

Hi, it’s Lisa, Pete’s ‘better half’ or ‘his wife’ as I’m also partial to be known!

It's been nearly ten months since Pete was told he should have a colonoscopy due to his symptoms and results of a FIT (bowel screening) test. It’s been nearly ten months since I found out that I would be at risk of redundancy from my job in a local primary school/Academy Trust which I loved. It has been nearly ten months of trying to understand how I feel (or maybe am devoid of feeling) considering the above news that was received all within the same week at the beginning of March 2023. It has been nearly ten months of Pete saying:"you should write a blog post too" - so here I am!

Those of you who know me will know that writing, reading and anything related is not something that I enjoy or relish; in fact it’s the complete opposite! This post will not read in the same way as Pete’s beautifully eloquent musings, for which I apologise in advance. Many will also know that my way with the spoken word is also very unPete-like in my blunt and often direct manner. This is by way of a disclaimer in case anyone wants to stop reading now…

So, what do I want to say?

Nothing.

This is very unLisa-like - for those that know me know I’ve always got something to say about most things and will have either 'been there and done that' or have researched into something so deeply that I may as well have done it. This is different; I have nothing to say. I think it’s because I know that whatever I say makes no difference to the odds we are facing. No matter what I say, I can’t make daily life any easier for Pete. I know that no matter what I say the cancer will do what it wants to do like it has already. No matter what I say won’t help our children to process the grief they are having to face. I know that no matter what I say I won’t be able to stop myself suddenly becoming overwhelmed by the immense loss I feel already. This is not meant to be morbid (I know it sounds like it) but it’s to try and explain how it feels to be the wife of someone living with cancer. "There are no words," is something people often say when we talk about the huge curve ball of incurable cancer that we’ve been thrown. I don’t have anything to rant about, vent, scream, cry or get angry about, I’ve nothing to say - there are no words. It’s almost impossible to face each day, but what are the other options? Seriously what else can I/we do?

During a work call before I finished for Christmas, we were all asked the same question: "What are you most proud of in 2023?" My answer was: "I’ve turned up each day even though these have been the most difficult days that I have ever faced." Some of you will sadly know what I mean by that with your own first-hand experience. When faced with extreme trauma, ‘just’ turning up should be celebrated as it’s bloody hard! Who wants to go to work or socialise and talk about how rubbish the prognosis is for their husband and family’s future? Not me! But I have. Sometimes it’s been the best therapy. Sometimes it’s been crying at the cashier in Sports Direct when she's asked for proof of my receipt that has pushed me over the edge, or the straw that broke the camel’s back, or any other saying that fits. Or, when I was donating blood the other day, the young lady stabbing my arm asked what I was doing for New Year. I should have answered:"Oh not much, you?" Instead, I told her we’re having a quiet New Year as my husband has cancer. This resulted in further questions and a conversation that literally ended in tears for both of us, the nurse apologising for crying and for making me well-up too.

So, I either say nothing or tell the truth. Neither seem to be working out that great at the minute but I keep asking myself: who actually cares whether our conversations work out perfectly? Is it not more important to be real? Should I be more mindful of others above myself? Well, I’ve never paused to think before, so I guess that won’t be starting anytime soon!

It has started at home though. Pete and I have always spoken our minds with each other and have been able to respond appropriately (eventually), and I think that’s been a strength of our marriage: being heard and understood. Since the cancer diagnosis we’ve both continued to speak our minds with varying degrees of success. Now, I am often being mindful of how Pete may be feeling or interpreting what I say. I know it’s the same for him too as neither of us wants to add an unimportant argument into the mix.

I remember when I’d had an extremely exhausting day at work, with colleagues asking after Pete following one of his early updates. They were showing me love and care by their questions, but there was a constant flow of this all day mixed in with talks and thoughts about losing my job. This was hard as you are managing their emotions as well as yours - I’d have had it no other way though. Pete had also had a tiring and tough day but when I was explaining how hard it was talking about him most of the day, he chose to respond with "but you aren’t the one with cancer" in a comparison to who was the most rung out by the day's events. I have no idea what it’s like to be him living with cancer, but I knew he also didn’t know the difficulty I was facing daily. That time I didn’t say anything (you see miracles happen!) as I knew he had the raw end of the deal. However, a few weeks later when he repeated the same phrase I couldn’t hold back. Pete has no idea what it’s been like to be me (I can hear how selfish that sounds); I felt invisible and insignificant alongside feelings of utter uselessness. After a short exchange of honest words, there came the tears and the usual reconciliation of minds that we’ve become used to this year; a different type of 'resolution' to negotiate than we've had in the previous 27 years of married life! Funnily enough, he hasn’t said it since ;)

I have also had my fair share of saying the wrong and seemingly most heartless things during the last ten months. Saying to Pete one day: "I think you’ve reached the point of talking about you and your cancer too much" was probably not the sentence I should have said out loud. Pete will usually shy away from being the centre of attention (he battles the introvert within him by continuing to write this blog) and, early on, had said to let him know if it becomes all about him, so I helpfully said so. This is a natural place for Pete to be in - let’s face it his cancer diagnosis has consumed how and what he thinks about as well as how he spends his time; everything has become about him! We exchanged words and tears again and moved forward a small increment together.

Obviously, a lot has happened since the initial diagnosis and prognosis and most things do revolve around Pete and living with cancer. This is not selfish but essential. I think as a family and individuals we are starting to break through the cancer-centred mentality, as Pete has mentioned in his previous blogs. It’s not easy to do as it means often there will be a clash of wanting to do something, but not being able to do it pragmatically.

Having an emotional response to things we are doing, like wrapping presents on our own or going to friends' houses or events alone due to tiredness or treatment schedules, has happened over the festive break. We wouldn’t have batted an eyelid before. These are now ‘firsts’ which I’ve never considered before. I’ve walked life together with others that have lost husbands, fathers, sons and have always thought about the ‘firsts’ after someone has died. I’d never considered how difficult the ‘firsts’ would be when living with cancer. These ‘firsts’ could well be the ‘lasts’ as well but none of us know whether it will be one or the other or both. It’s like those memes you see saying 'you never know when the last time will be that you’ll carry your child in your arms'. There is a sadness that fills you as a young mum making you want to hold onto your child and carry them for as long as possible. There is a future loss that you don’t want to face for as long as you can ignore it. It doesn’t stop you putting them down but makes you give them that extra little squeeze as you do. The thought of some of these firsts also being the last, doesn’t mean we don’t do them. It means that we are fully aware of them and ‘squeeze’ the joy and love into each one just in case or, if we don’t realise in the moment, we look back and acknowledge the time that has been had by recognising the good. This time together is difficult, but many families don’t have the time to process their loss and grief together - this is something I consider a privilege no matter how hard.

So, 2023 has been tough and has taught me a lot. It has shown that facing redundancy and losing the job I’d loved didn’t mean that another job couldn’t be as fulfilling, or that I wouldn’t grow to love it with time. I’ve been in my new role for three months now and I’ve grieved the loss of my old job and the school and relationships with friends where I worked. It sounds dramatic, but this year has dealt us some pretty dramatic cards. My job isn’t the same as before, but I work with people I like, and each day is varied. It’s a new challenge and who doesn’t love that?

It’s also shown me the richness of the friendships we hold. I’m sure while reading this that many of you have felt helpless (as I have done) in how to speak, support or make a difference to us as a family. Just so you all know – It has been enough, more than enough. Card, gifts, texts, hugs, words, acts of kindness for us and our kids, invites out or a coffee… this has been what has kept us going. It is a lonely place but the constant nudge of friendship each day is a warm and comforting hug. It has made me realise the importance of truly knowing people and that a depth of unconditional friendship means that we’ll never have to face things alone.

What has surprised me the most is the warmth that comes from complete strangers. This blog, and our story via word of mouth, reaches people that Pete and I have never met. However, the compassion others feel for us is strong and real. A first conversation I had at the end of our Christmas work do (group photo above!) with a friend’s husband who reads this blog turned into a connection. He too had his story about the loss of his dad to cancer and he shared with me how Pete’s writing had managed to put his own feelings into words, how powerful Pete’s words have been for him, and continue to be. That connection had us cry a little and share deep thoughts and feelings together. It also had unneeded and continuous apologies for actually connecting, along with offers of "if you ever need anything please ask." It could have been the alcohol talking, but I doubt it. I honestly believe if I turned up on their doorstep asking for help, along with every other offer of help, that nothing would be too much to ask of them, that they would probably drop everything to try and make my life a little easier than it is. Isn’t this the most wonderful part of suffering - selfless and unconditional love? If I was Pete I’d insert something really deep that is spiritual and educated!

The strength of our family (pictured in Christmas 2018 above and this Christmas below) has astounded me this year. Not only within our immediate family unit of six (becoming eight, nine and maybe ten now with partners!) but also our extended family. We have never been a family that has lived in each other’s pockets, whether that be Pete’s side of the family or mine. We have a quiet contentment of love but would always be there for each other when times are tough. It’s been tough, and our families have been there. We’ve also been there for them too - how do you process the reality of your son or brother having cancer? It breaks me to know they are all in this with us, no-one is protected, even my own parents and siblings are sharing this pain.

Since diagnosis, the conversations we’ve had have had to be open, honest, and brutal in a way like never before. Our safest of places have been when having these conversations with our children, realising that the ‘children’ sat in front of you aren’t children anymore and that they have been the ones to bring much-needed normality to each day. Nothing distracts from having an incurable disease than to be asked what’s for dinner, 'have you seen my (insert any object here)?', 'can you take me here?', loud bangs/screams/music coming from all angles, or conversations about which one of them has blocked the toilet… they are the most wonderful humans ever created (I may be biased?!) and have shown endless love and empathy towards me and Pete. I wish more than anything that this wouldn’t have touched our family, that we would just wake up and it have been a dream. It is our reality, and having hugged, questioned, and cried with each of our children over this past ten months has been precious and humbling. We are very lucky to have each other; some people have to face the same diagnosis on their own. I’m certain this must be unbearable.

We are moving into 2024, because it’s arrived and there is no opt-out function. Again, I’ll be turning up each day and I’m celebrating that for as long as I can turn up. This past year has been difficult to wade through and find the positives from. This next year is not one that promises anything positive, however I will find the positives regardless. My mantra this past year has been 'Not every day is good, but there is something good in every day.' When you look for it, I promise that you can find it. One day the only good I could find is that Aldi sell nice jellybeans that I’d been snacking on most of the day!! There was still something good in that day; imagine how miserable I’d have been without them.

I’ve said a lot for someone that didn’t have anything to say. Thank you for reading and for loving Pete, me and our family. We couldn’t do this without you.