‘Hope all is well’

The following post is a bit unusual from me. Buckle in, brace yourself. I was going to call it ‘go fuck yourself’ but thats not nice. And my mum wouldn’t be proud.

A mum I met during treatment, who now very sadly has a daughter entering into palliative care, asked me to write about this. I could never find the write words or feeling for it. I wanted it to be honest and felt I didn’t have enough experience to say something honestly.

Today I experienced some ‘bullshit’ myself. Another mum, who’s son is in remission, agreed with my recent feelings which I shall now try and explain below.

There seems to be something that affects all parents of cancer kids: superfluous comments from superfluous people that are frankly disingenuous.

This is an acute side effect of the situation. Or to put it another way, your bullshit threshold is much lower when you are faced with a strong sense of losing your baby/child. And before you jump ahead, it wouldn’t be fair to say that Cancer Parents are ‘over-sensitive’. I think you’ll find that they are actually very tolerant as they appreciate how difficult it is for anyone to understand their situation. Today my bullshit-o-meter was set at low.

Example today: in response to a ‘congratulations’ from me, then some back and forth chat and a ‘hope all is well (and better) with you guys’.

Example from the mum above: ‘ [kids name] turned 4 today. Sadly we weren’t able to travel out so we celebrated at the hospital.

Response 1 : ‘Awww that’s such a shame we went to Euro Disney for [Child A]’s birthday. It was amazing and can’t wait to take [expected sibling] when he arrives.

Generic Response 2: ‘Happy birthday. Hope all is well’.

Now on the face of it these might seem like polite and perfectly fine responses….if you were working in a professionally self-absorbed capacity. But it’s ok because ‘Cancer Parents’ don’t give a shit about you either. They don’t expect you to care but when they are being polite and supporting your covertly-overt showing off or happiness milestones, don’t be a self-absorbed idiot back. It’s called empathy.

Let me explain. ‘Hope all is well’.

For a long time now I haven’t been bothered by much that other people have said – and please believe me when I say I’ve heard a lot of bullshit and a fair amount of silence from a few people who haven’t said a thing. I wasn’t bothered by much. I often say ‘it’s ok you don’t need to know what to say. There is nothing to say’. I was occasionally bothered by the silences. Until today.

Today I realised, my holding it all together so well is doing some people a massive favour. It takes a lot of effort to hold yourself together so well in such a situation.

Don’t ever think that it’s easy. Not for a single minute is it ever easy. On one side we have a mother who has a child she will be burying and on the other side we have wonderful remission. In the middle, we have us, not knowing which path life is going to take us on.

‘Hope all is well’ doesn’t cut it with me. If you cared you would already Fuxking know.

Nor do Cancer Parents think that the world revolves around them. One thing you realise early on is the world doesn’t revolve around you just because you have cancer in the family. We never thought it did before all this. And we don’t see it like that now either. Our centre of gravity doesn’t aim to pull in mass amounts of superfluous attention. It never has. Our centre of gravity is, much like others, our family unit. The world, life, work, people, friends, family, dogs, cars, birds etc all carry on regardless. And we carry on the fight to keep our kid alive. Life goes on for everybody. Except us.

‘Hope all is well’.

Well, firstly you aren’t asking. Your stating.

Secondly, if you cared even a little bit you would already know.

Thirdly, a cancer parent would rather, if you didn’t care, that you didn’t come out with comments that don’t carry genuine empathy.

As my other mum friend put it;

‘It’s the fact he didn’t even ask, he just said he hoped all was well…it’s dismissive and not good enough, he should be embarrassed but he probably doesnt have an ounce of empathy. If he did, like you say, he’d already know how things are’.

I’m lucky in that I have wonderful friends who care and communicate in the most supportive manner. I’m lucky but not everyone out there is lucky and my Mum Friend wanted me to write something and today for whatever reason I’ve been saddened by it. Today, I know fully what she meant.

Don’t make excuses. If you care, ask. If you don’t, it will eventually make itself known. There is a difference between being too busy in your life and genuinely caring. I personally, don’t want anyone to feign caring. I’m thankful I have people who communicate around me. It would otherwise be very isolating.

This cancer battle is hard enough, it hurts more when you have to engage with self-serving assholes. Because, an asshole is what you probably are.

*And one more thing asshole, it’s ‘you’re’ not ‘your’.

Why is she so different?

As is often the case, rather than supervising the brushing of little teeth, I often end up answering philosophical questions whilst perched on the side of the bath tub.

Tonight

A: mummy….why is JJ so different to us?

Me: (thinking wait have I missed something here- cancer is worse what are you talking about). How do you mean exactly?

*I felt so sad that she asked me this. It was inevitable really. We talk about things often and honestly. Today she asked outright *

A: well she can’t hear..

Me: well a lot of people can’t hear. We just haven’t met them all before. A lot of people can’t hear. They wear hearing aids or implants or nothing. You don’t have to feel sad about this. She’s doing great and she can hear.

A: oh….(long pause)….Well it still makes me sad.

Me: I know but she’s…..

A: cute? I think my little sister is very cute. I’d like to have ear plants (implants).

Me: why? No you don’t need any ear plants. You got lucky.

A: she is cute.

Me: yes. You all are. Let’s go.

Mr Squirrel

Today I achieved something amazing for me and for us.

I took my signing teacher to the park and signed all the way around. We showed the babies things around the park. A leaf, a flower, a little daisy, a tree. It was fun and the first time we have been out together. At the end, by chance, we walked through the part that had squirrels running around.

I stopped and signed ‘Jasmine look, a squirrel on the tree’.

The kids were fascinated. I looked over at my signing teacher and asked her if she remembered what I had said to her a long time ago. She smiled and nodded. I signed back ‘I didn’t know this day would come’. I started to cry, happy tears, and I hugged her tightly. She smiled.

Not long after Jasmine was diagnosed as profoundly deaf I met a signing teacher and a Teacher of the Deaf.

Somewhere amongst the early conversations I said ‘I need to learn to sign, I need to learn a lot and quickly’.

They told me not to worry. They said I could learn with her.

I said no. I need to be able to guide my child through life. I need to know more than she does otherwise what hope does she have. When Anaya was young I took her to the park and explained seasons, hibernation, textures, counting and empathy all in one walk. I talked to her about squirrels and collected hard, smooth shiny conkers. She counted them and we left them in a hole in the tree for the squirrels so they could store them over winter. (Now, this is not the type of intellectual conversation we have on a regular basis so I was particularly pleased with my parent skills that day. So much so that I remembered my ‘you can do this parenting stuff’ moment).

I went on to add, ‘how am I going to do this when she can’t hear me and I don’t even know how to sign squirrel, tree or nut, how will I keep her safe if she can’t hear me shout out to her, how is she going to learn to speak if she can’t hear, how will she read if she can’t hear, how do you learn the alphabet if you can’t hear….’

Then I started to cry. I was so sad. I’d lost an enormous part of the relationship I wanted to have, and in the only way I knew how to have it. We have come along way since then. My signing hasn’t improved much since Daya’s diagnosis. I haven’t had time. But I try.

Today I signed it. And I said it.

Today I felt a little bit proud and relieved. Today, I exhaled a teeny tiny bit. Maybe in time, I’ll realise I hadn’t lost that much but gained much more. Signing takes connection. It takes slowing down and being present. It’s more engaged. You can’t sign at someone in the way you can talk at someone. You have to sign to them face to face. It is a much more present and active form of communication. You’re always engaged. It’s tiring but then what you say matters. And only what you say matters.

This is so big for me. This moment.

I signed to our teacher, ‘I didn’t know this day would come. I’m so happy. Thank you. Thank you. I couldn’t have done it without you. Thank you always’. I gave her a hug.

Between perseverance and hope

Between a pub called Perseverance and a church cafe with an illumination of the word ‘Hope’ sits one of the best children’s hospitals in the world. I wonder if anyone else has every noticed these aptly names entities. I suspect parents have….

Results milestone

I’m sorry I haven’t updated anything for a while.

I’ve been struggling. Struggling to find the right words. Struggling to come to terms with a lack of certainty about the future. Struggling with the relentlessness of the ‘holding pattern’ lifestyle. ( A holding pattern is similar to a flight path the aeroplanes take when you almost get to your destination but they can’t land. So they keep circling around the airport in a pattern. That’s my life. On hold. No getting off. No time frame. Almost there but in fact no where. I’ve also been juggling all three kids and Jasmine’s appointments. In between I’ve been trying to enjoy my time/ our time together. We can’t go anywhere so have been at home playing.

So, we have results. Results that I’ve been thinking about. Trying to digest.

News is often polarised into good news and bad news. Good news is often taken in and digested and people are able to move on feeling good. Bad news, sometimes, almost immediately kicks off ones ‘perspective raising mechanisms’ (that’s my new term for the type of people that start thinking about all the people that are worse off and how the situation could be a lot worse). You can’t have much perspective when you are in our situation. But we try and it helps.

I have some good news and some bad news.

I don’t want to talk about how I feel about it. I’m just plodding on.

So after 8 rounds of chemo, the last four being CADO, she has cleared her metastatic disease. There is no more cancer in her bone or in her lymphatic system. Her main tumour has also reduced in size but not enough. The tumour was basically taking up space in one side of her abdomen. Everything inside was squeezed or moved over. A kidney was lower down. Lungs and heart were higher up etc etc. Anyway that’s the good news.

The bad news is that she will either need surgery or highest dose chemo. Unfortunately the scans were not overlaid and merged onto one another in time for our appointment and the surgeon didn’t turn up for the appointment. So we don’t really know what the plan is for surgery. Last week Daya was under general anaesthetic again for urgent scans. She’s scheduled to have another one either this week or next. We should know feasibility soon.

There are significant risks with surgery. She will likely lose a kidney. We have two. There is risk of damage to the bladder and liver. She may also lose the movement in her legs. Most importantly her aorta and all the vessels to her vital organs are going through the tumour ( and feeding it). It is still surrounded by too many capillaries. There is a risk the surgeon might accidentally cut one of these. Daya would die.

Highest dose chemo is something we have been desperately hoping she would avoid. She will likely lose her hearing and have delayed cognitive function and neurological damage. There are other longer term health issues as well.

The cancer is still alive in the her body.

She is weak and tired. Her bloods are only just starting to recover. She’s not eating properly. She’s still waking at night. My body aches.

As I said once before, you don’t beat cancer, it beats you. That’s why they are called ‘survivors’.

Which brings me on to my last point. Her cancer has a very high chance of coming back. There will be no further options to explore if it does.

Mama

Today, at the end of a long day, you walked towards me from the kitchen to the dining table and said ‘Mama, mama, mama…’. You said it all the way until you got to me and we had a tight cuddle. This was the first time you said my name.

Happy Raisins

Yesterday you toddled into the kitchen saying ‘raise,raise….raise?’

You opened your drawer and pulled out a packet of raisins.

You waved them at me and said ‘happy?’ As though asking me if I was happy. I said ‘yes, happy’.

You said happy and toddled up to me. I was sitting on the floor and you put your little arms around my neck and whispered ‘happy’ into my ear.

I held you and cried.

I love you. I wish you didn’t have to go through this.

I love all three of you for so many different reasons in so many different ways. Thank you for giving me love.