cancer

Nighttime Thoughts

~ Naomi ~ 12 Comments

I have a hole in my stomach.

It’s horrible, achy, painful and black. It expands and contracts as I breathe. It’s getting bigger and I’m scared it’s going to swallow me whole. I believe it’s called grief, but that seems such a small and insignificant word to describe a feeling so big and all-consuming.

Tonight, I spoke to Dad. I rang him up to discuss a website and various other bits and bobs. My uncle had sent me a photo of the family from the weekend. I enquired who a few people were (I get confused by distant relatives) and asked after Mum – she looked small and tired.

She’s sleeping more. Her bloods are fine. She’s just tired. There’s no point in scans now so we don’t know how the disease is progressing unless there are markers in her blood results. I guess her body is just tired of fighting this crap.

We spoke about summer. We don’t know how well Mum will be then… if she’s still with us then. Once again it hits me in the stomach, ripping me in two. Sometimes I forget for a moment – but never for long. Grief doesn’t allow that. Cancer doesn’t allow that. It doesn’t let you forget. As soon as your drop your guard, even for a second, it will strike again.

I spoke to my brother. I had to explain who the family members in the photograph were, how they fit, who they’re related to. It occurs to me that we might not only lose Mum when she dies.

Nights like these I don’t know what to do. Crying seems so pointless, yet often it just happens and I’m left exhausted when it finally stops. I want to curl up, I want a hug, I want someone to tell me it will be okay; thinking like that reminds me of being younger when Mum or Dad would stroke my hair and tell me it will be okay. But they can’t right now, because they’re not here, and it won’t be okay. I want to run and run; to keep running until I can’t. But realistically, it’s gone midnight, I’m crying – it probably wouldn’t be the safest idea.

So I’m left in a state of confused grief; clinging onto hope that we might have a few more weeks or months whilst attempting to accept that we probably won’t. I feel utterly lost and alone in this strange situation. Imagining a future without Mum seems impossible, I’ve never known a life without her and thinking about it sends me into a state of turmoil, so I don’t.

I wish I had someone to talk to who knew how this felt. My brother has gone to bed. I don’t want to burden my friends – I’ve been banging on about this cancer thing for over a year now and I imagine they’re getting bored of it. They have their own issues too, their own lives. I live with a cancer cloud day in, day out, but they shouldn’t have to, too.

Someone sent me a list of organisations in my area the other day. I look through them. There’s some ‘bereavement support’, but I’m not bereaved (yet) so that’s no good. There’s one for parents, siblings and grandparents. I am none of these. It only serves to make me feel more lost and alone. I know there are no words that can fix this. I know that it has to hurt, but sometimes hurting with someone who understands, instead of hurting alone, can help.

It’s half two, now. I’m hoping to get a night of unbroken sleep but I can’t remember the last time that happened. Lately I’ve been going to sleep with the radio on; it feels less lonely. The darkness can be scary when all you have are your thoughts, sometimes it can feel like you’re the only one in the world.

There’s no grand meaning to this post. No take-home message. It’s just me, speaking to you, whoever you are. Thank you for listening.

Not Like The Movies

~ Naomi ~ Leave a comment

Nobody tells you that terminal cancer is not like in the movies.

You can’t put your life on hold and all gather around the sick person. It doesn’t work like that. You have to carry on with life, living each day as well as you can. Never able to fully forget or let go; your hand permanently attached to your phone, waiting for the next text or phone call.

Nobody mentions that cancer isn’t linear. You can spend a weekend with an unresponsive parent; coming to terms with saying goodbye… and then they come back to life. Nobody can tell you how long they’ve got left. You always have to be prepared.

Nobody warns you that you will lose friends. Because transitioning between real life and hospital life becomes too hard. Hospital feels clinical and safe and moving back out into the world is overwhelming. They don’t warn you that you will be so tired from traveling back and forth, from holding yourself together and being there for everyone else that you forget to reply to texts. Friends become strangers.

Nobody talks about how traumatic it is. The nights spent curled up, crying, wondering if life will ever settle again. They don’t talk about how the dying person tries to leave you with bits of them. How they plan 30 years into your future whilst you’re struggling to accept the now. They don’t talk about what happens after death; when the person is gone and you have to develop a new normal.

Nobody can ever understand what it’s like, unless they’ve been through it. How your whole life can be on hold but also moving so fast. How you learn to play a part, act out a role, paint the right picture. They can never understand how much it physically and emotionally hurts, or how your whole body can cry.

Nobody warns you that it’s not like the movies. You can’t switch off when you start crying. You can’t pause it when it gets too difficult. There are no balloons, no presents from big companies, no meetings with famous people. There is just you, your family, your friends, and your loved one attempting to make some sense of a situation which has no meaning. Working together to find some peace, acceptance, and the courage to keep going.

Deceiving ‘wellness’

~ Naomi ~ Leave a comment

Mum1

I posted this picture on Facebook last week. Everyone keeps commenting on how well my Mum looks. How she’s amazing. How strong we all are.

My Mum is amazing. She was comatose a few weeks ago and we thought she’d die. She very nearly did. Since then she’s regained some mobility, knitted two baby cardigans (ready for if my brothers and I ever have kids), proof-read two essays for me, been to the cinema a few times, shared lots of laughter, given me hugs, and shared many happy moments with friends and family.

But Mum is by no means ‘well’. She’s a heck of a lot better than she was when she was in hospital, but she’s not well. She has terminal cancer; it has invaded her body and stolen her health. When you look at the pictures and see us smiling together, we are happy and we are enjoying the time we have together, yes, but pictures can be deceiving.

Mum and I spent a lovely day together on Friday , we were happy and enjoying ourselves. However, what you don’t see is that she’s sleeping for 15+ hours a day. You didn’t see her walking into the building with her stick (she’s come so far – a few weeks ago it would have been a frame or wheelchair). You also didn’t see her not finish her meal, or notice how much weight she’s lost. You didn’t hear me ring up before the event to check access requirements – there has to be a disabled toilet and can’t be too many stairs. A year ago my Mum was climbing hills with us in the Dales, that’s just a few examples of how cancer can affect a previously fit, healthy, woman.

You didn’t see me worrying the day before because I hadn’t seen Mum in a few weeks and wasn’t sure where her health would be. You didn’t hear my Dad and I discussing life, death and health all the way back to uni. You didn’t see me crying on Saturday night, because I found similar pictures of us from 14 months ago and the difference shocked me.

I love my Mum and I’m so glad she’s still with us. She’s amazing and she’s come so far. Compared to a few weeks ago, she really is ‘well’. But please don’t assume that she’s better, or recovered. She’s not going to recover and she’s not going to get better. She is dying, however much that’s a taboo word and however much people don’t want to talk about it. Don’t hold out false hope, because it will only be harder when she goes downhill again.

Why am I blogging this?

~ Naomi ~ Leave a comment

I was going to wait until after essay hand-ins before I started blogging about this, but as it’s Dying Matters Awareness Week, (check out #YODO on Twitter) now seems like a good time.

My Mum is awesome. She’s brought up three kids (and I reckon we could have turned out worse!), had an amazing career in palliative medicine, volunteered for the church and sold Fairtrade for years, taken part in various exercise-related things, and still found time to attend a gossip/book club and spend time with her friends.

Unfortunately, in February 2014, she was diagnosed with terminal cancer. It’s a fairly crappy situation, but we’re lucky to have some amazing family and friends around us to support us, so it could be a lot worse!

Why do I want to start blogging about this? Well, considering that cancer is something which will affect most people at some point in their lives – it’s still a bit of a swear word. We don’t talk about it! I don’t know if that’s because people think that they’ll contract it if they talk about it (don’t worry – that’s not how it works), or they just don’t know what to say, or quite what. It’s in movies/films a fair bit but in all honesty I think I’ve only ever seen one that comes close to explaining what cancer is really like.

As a young person living with a parent who has a terminal diagnosis, I’ve discovered a fairly considerable hole in the people-dying-support-system stuff. There is a lot of support out there for children with a close family member who is dying; there is a fair amount of support for spouses and for parents of people who are dying. But not really anything for those of us who are adults-but-not-really, i.e. those of us who are over 18, but still haven’t quite worked out what a mortgage is and see cereal as an appropriate dinner (fairly sure this lasts until you’re around 25, correct me if I’m wrong).

This is incredibly isolating. I’m really lucky to have two brothers and a Dad who I can chat to, a great uni welfare team (and a very understanding academic department), and some wonderful friends. Furthermore, because of Mum’s previous job, a number of our family friends understand the whole palliative medicine thing a lot better than I ever will. But unless you’ve actually been through it, or are going through it, you don’t quite ‘get’ it. Don’t get me wrong, I’m immensely grateful for all the people we have around us and I wouldn’t be without them, but sometimes there’s no substitute for someone saying ‘I get it’ and knowing that they really do.

So I’m writing this for a few reasons. Firstly, I’m hoping it will help me process things, I find writing very cathartic at times. But the real reason I want to write this is to reach out to others in a similar position to me. Those of us who are attempting to work out life whilst trying to understand death. Because I don’t believe I’m the only one in this position.