Alice… what's the matter?

You can shed tears that she is gone
Or you can smile because she has lived
You can close your eyes and pray that she will come back
Or you can open your eyes and see all that she has left
Your heart can be empty because you can’t see her
Or you can be full of the love that you shared
You can turn your back on tomorrow and live yesterday
Or you can be happy for tomorrow because of yesterday
You can remember her and only that she is gone
Or you can cherish her memory and let it live on
You can cry and close your mind,
be empty and turn your back
Or you can do what she would want:
smile, open your eyes, love and go on.

She is Gone – By David Harkins

This last couple of weeks has been a very strange mixture of fact and fiction. Of TV dramatisations of real life tragedies (The C Word, on TV at last, Lisa Lynch!) Of work deadlines and home deadlines all seeming to coalesce into some kind of weird vortex of limitation and pressure. I have a big project at work that is nearly at its completion, something that I and the people I work with are pretty proud of and that matters to us. At the same time Mum has been really poorly and I’ve been trying to balance spending time with her as well, because of all the things that matter, family matters most.

On Tuesday the doctor and the palliative care nurse asked my Dad and I into a side room at the hospital for a chat. You know it’s never going to be good when there needs to be both a doctor and a kindly looking nurse on standby in a “quiet room”. I’ve been there before and I didn’t like that news, either.

The doctor basically told us that all the oncologists in the hospital got together and as a result wanted to let us know that there isn’t a great deal that we can do to treat or help my Mum any further. They have run out of ideas. I sat there with my Dad as we listened to the Doctor and we calmly went through all the things they had already considered and tried. They were very patient with us as we gradually exhausted the list of our own ideas and questions and then just kind of sat there in a stunned silence. We’re not stupid, we have been expecting it at some point but equally dreading and not believing it would ever be here.

What kind of reality is this that means the person who has always comforted me since I was little, who has always showed me she loved me in a million different ways, will no longer be available for me to hug and kiss, to bake mince pies and cakes, to buy me useless tat that she found in a shop the other day, and tell me about the stranger she got chatting to in the shop? No. Surely that’s just a mistake.

But when I see her, each time I see her, I see how frail she has become, and how she hates to see photographs of herself, her appearance is so changed from the person we saw only a couple of years ago. I wonder what she’s thinking and whether she would have chosen to have to go through this. Mum’s already fading away from us, a lot of the time is barely conscious. When she’s awake, she’s in pain and I feel useless and powerless.

I’ve been trying to explain to my friends how I feel. That it’s not particularly that I’ve left things unsaid (I tell her I love her every time I see her) or that anything specifically has been unsaid by Mum (likewise she is a loving person)… It’s just that it felt like Mum and Dad protected us too much by not sharing their concerns with us as we were growing up, and that’s meant that they’ve always been a tiny bit mysterious to me. With Mum, partly that’s because she tends to bottle things up (shush now, don’t start talking about me!). I just really don’t want to feel like she’s about to be a permanently unsolved mystery. But equally, I just haven’t had the right questions to ask to get to any level of insight that suggests I was right about this – It’s just a feeling.

Maybe that’s just the feeling that everyone gets when they know that time is running out for an opportunity; that they don’t know the right words to unlock life’s secrets and so they scramble around trying to find them out in increasingly ill-thought-out ways. I wish that I could offer my mum some comfort by talking to her about her faith and so on… but that’s not me. I find myself wishing I was better at small talk, wanting to have more boring inane rubbish to gibber at her if that will only mean that I somehow keep her awake, keep the connection going between us for longer. Is that selfish? Should we really want to prolong this painful awful experience? It seems pretty bloody awful and that’s just from the sidelines.

The trouble with the dying part of cancer, is that it’s a lonely business. For the person doing it, and for each person who is along for that ride. Nobody knows anything much. There can be no plans, everything is uncertain and unknown. Spare a thought for for the people who have to go through the pain and indignity of doing it as a kind of slow motion car crash with an audience of sad loved ones faces in front of them, the people who are trying their hardest to support them but are probably just being really bloody annoying as well.

There’s not much I can tell you about this mysterious process nor what happens next. I just know that this hurts my heart.

Maybe I’m also being too “me-me-me” and tragic and overdramatic. I don’t know.

But I’m asking you – begging you – no matter whether you have ever been seriously ill or not, whether you’re in a happy state of mind or not, please, please, please don’t leave things too late. Always make the most of your time on this earth. I know that your finances aren’t limitless, but your time isn’t limitless either. Please don’t leave this life with regrets, things left unsaid or places left unseen. Make up your arguments, say the unsaid, deal with your crap as best you can and then spend your time on the good stuff.

There is a lot of beauty in simple things, and you shouldn’t get caught up in the stress of a moment, when in the long run none of it actually matters. All that matters is that you tell the people you love, that they are the most beloved, special, amazing people in life, and that you make sure you cherish every moment with them.

Because the hardest part is knowing that the moments you have with them are finite.

My eyes are on the clocks, I know your brain is glittering
We fed it to the dogs, And this is such a bitter thing
I’ve got you all mapped out – Your face, your fever
You are without a doubt the worst believer

Turn it around, I’ve found that I’m lonely, kick it down a notch to only see that we
Ran out of everything we dreamed.
Take me out with all of your demons, on the ground floor without a reason
I’ve finally found a method to come clean,
Fading…

The worst is yet to come, Erase it all and then display the sun –
Don’t you say you’re not the only one who’s from where you’re from.

Turn it around, I’ve found that I’m lonely, kick it down a notch to only see that we
Ran out of everything we dreamed
Take me out with all of your demons, on the ground floor without a reason
I’ve finally found a method to come clean,
Fading…

Lyrics by Seafoal (Sienna Sweeney)

Mother’s Day’s a time of year to celebrate a life

of someone who is dear to us, a Grandma and a wife

We think about her kindness and we smile at one another

And we’re so grateful every day, because she is our Mother. 

The most important thing to say is Thanks – for all she does

She shaped us into who we are, and gave us all her love

For all the times she held our hand or made us feel much better

She made us brave, she makes us proud, because she is our Mother.

It’s time to let you in on a little secret. One that has only been uttered amongst close family and friends a couple of times so far, but I think it’s time to say it here.

I’ve not been deliberately keeping secrets. I’ve just been holding off posting, partly because it’s online and visible for anyone to see, and partly because I haven’t really known how to express how I’m feeling.

Of course, when I had a total of 2 followers and hadn’t told anyone the site existed, I didn’t have this problem. Now though, I have at least a few friends and family who read my rambling posts here, as well as my #BCCWW #BCSM Twitter & Facebook friends and WordPress readers who are kind enough to share links to this blog.

I haven’t had the chance to tell everyone close to me about how I feel, and they may see it here first, but I hope that they know me well enough now and can forgive my propensity to retreat into myself. They know I channel my efforts into the written word when times get emotionally difficult.

As ever though, there are many songs and lyrics which express the right sentiment at a given moment and do so in a beautiful way, and I wanted to share one with you today. It will help me tell you about the things happening in our lives at the moment.

I heard this song as I was driving down the M11 on my way to Essex to see my parents. This particular journey was about 3 weeks ago, and I had a CD on in the car that my friend Guy had made us for the trip to Florida that we made this time last year. Nestled amongst “Summer of 69” and “Livin’ on a Prayer” was Kate Bush. She of the floaty dresses and bare feet who I wanted to be when I was little, and whose singing just hit the right spot for me at the moment.

The song track came on and as I cruised down the road I actually listened to the lyrics and realised how relevant they were to how I have been feeling.

One of the most indescribably hard things for me to handle in the last few months has been feeling so helpless to do anything for my Mum. I’m not saying that I haven’t pitched in on the practical stuff, like cooking up pies, visiting Mum in hospital and helping her to walk to the loo and so on, but those things are maintenance things, rather than anything that actually alleviates her pain or has any impact on her health in general.

Kate Bush, I’m with you on this one…

Oh if I only could, I’d make a deal with God, and I’d get him to swap our places…
Be running up that road, be running up that hill,
Be running up that building.

I’m not saying that I would prefer to have anyone else’s life in general, but given the choice of watching my Mum suffer the indignities of illness, pain, nausea, discomfort, confusion and fear, whilst battling to even stay awake long enough to finish a sentence, I would gladly step in and make the swap.

Kate Bush, you are one of my lyrical heroes.

Mum’s been in hospital a couple more times since her spine fractured last June – In November she was admitted with pneumonia and septicemia and during January she was back in after she became very confused – the calcium levels in her blood were very high and causing neurological problems including speech, muscle control and concentration issues.

It has been incredibly painful emotionally to have Mum be so ill, and it has been far far harder to deal with than it was to be the person who was ill in 2012. I feel so sorry for my family who had to go through all of this trauma when I was ill! One of my friends, Jo, said she felt that it was 50 times harder to have her mum ill than to be ill herself. The number is kind of irrelevant, but I think it helps to highlight the scale of difference, and I totally agree with her.

Most of my friends and family know that Mum has been pretty poorly, and that her illness is an ongoing concern. Perhaps they are less aware of how I feel about everything though, because I haven’t told them. I’ve been in “practical mode”, because if I stop doing that, I just cry which just feels rather pathetic and doesn’t actually solve anything. But there it is.

My Mum may well have seen her last Birthday. Her last Christmas.

Even writing that is so, so hard to do.

Her oncologist has told my Dad and my sister that based on her current state of health, and the progression of her cancer through her bones since June (it’s now in her spine, her pelvis, her skull) he would normally have recommended chemotherapy as soon as possible and that might give her a year or so. However since she’s not currently strong enough to cope with chemo, his thoughts were that this might halve the time she has left. So we’re talking months not years.

Now… I’m not saying anyone has given up on her, but amongst our loving but practical and logical family, it certainly doesn’t sound like the chances of her being here this time next year are all that great.

There have been moments where we almost got Mum back… when her health was not so bad, and she was walking and eating well, and when she could speak without pausing or using the wrong words. Those have been the times we have clung on to in our memories.

The other weekend when Mum was feeling well enough to get out of bed and have Sunday dinner with us, we were just all sat around chatting but we all had so many cameras and selfie sticks and video cameras and so on out trying to capture the occasion, it was pretty ridiculous. To be fair we are usually like this so Mum wasn’t too suspicious, but it just felt like all that camera activity was intensely packed into such a short amount of time!

Even though there is some (minor I think now though) risk that my Mum might see this, I promised Dad and my sister Jen that I wouldn’t say anything to Mum that might upset her or let on that I know anything more than she does about her health.

This leaves me in a horrible limbo land where instinctively I feel those sands of time trickling away and I want to talk to her about her hopes and dreams and what she would like to say to whom before her time with us ends.

I have to find sneaky ways to do this, bit by bit, by spending as much time as I can with her. But I agreed with Dad and Jen that we don’t want to tip her off that things are this serious, because everyone thinks that might cause us to lose her even faster.

It’s just that…

The thing that I’ve identified that I am most frightened of all, is that there will be something that she would have said to me, something that she won’t say because she doesn’t know that she’s running out of time and chances to do it.

I don’t want all of the conversations we have left in life to be about jam sandwiches, whether she can hold her teacup and which carer gave her a bath. Or worse, not have conversations because she’s asleep all the time instead of just most of it.

I want to tell her how amazing she is and what an inspiration she has been in my life, and what an enormous cavernous hole there will be in my heart when I can no longer see her smile, touch her and hug her, and talk to her.

I want to tell her that I recognise a lot of her in myself, and it makes me really proud. I want her to understand how incredibly important she is to so many people, because I think she has told herself the opposite too often.

She’s like me you see – a bit prone to keeping all the juicy emotional stuff to herself.

I still, after 40 years, want to understand her better.

If I only could…

It doesn’t hurt me.
Do you want to feel how it feels?

Do you want to know that it doesn’t hurt me?
Do you want to hear about the deal that I’m making?

You.
It’s you, and me.

And if I only could, I’d make a deal with God, and I’d get him to swap our places…

Be running up that road, be running up that hill,
Be running up that building.

Oh if I only could…

Listen to it here: https://www.thisismyjam.com/song/kate-bush-llr-remix/running-up-that-hill?with=9ncxdxz

Lyrics by Kate Bush – “Running Up That Hill”