The Wounded Soul

I will never forget the moment your heart stopped and mine kept beating (Angela Miller)

I received two text messages. The worst messages that any parent could ever have to write.

Yesterday, I received a text message in the morning to let me know that a child had died that night.

In the evening, I received another message, from another mother, letting me know that her child had died that morning.

We are heart broken. We reluctantly accept, as they do, that this is how life happens sometimes. We have no choice in the matter. Life is cruel. Life is unfair. It is a painful loss we all hope to avoid and some have to endure.

Losing a child is the worst possible loss anyone can ever experience. You are fundamentally wounded. The wound does not heal. If you’ve read this blog before you already know that we have experienced far too many losses already; paediatric cancer is awful.

To some the death of a child will only ever be an ‘event’ in their lives.

Perhaps someone who they worked with lost a child, perhaps a neighbour across the street lost their child, a funeral they attended once upon a time, a wake they catered for, a hearse they supplied…but for a parent it is an everlasting event that denotes the absence of their child. It is ultimately the loss of an unconditional love that has been robbed, betrayed and wounded.

Out of respect for our friends who are mourning their children and those who are in palliative care, I would like to stay silent on this blog for a week.

Sisters

The best bit of being home for a little break is watching them interact.

Daya is tired. She is worn out and has little energy. Her sisters come to her. When she is awake she will play next to her toy kitchen or sit in the garden and watch her sisters play.

Supporting Mental Health Awareness Week

“How you feel…well…that is just…how you feel”, Me, 2019

I haven’t posted in a while. Things have been difficult. I’m at a loss for what to focus on in this post. Life, death, grief, disappointment, obfuscation, disregard, mistakes…you get to see the best and the worst of humanity when you are the most vulnerable person in the room.

I’ve been a bit confused. After so long inside, we were out and then had to go back. It’s like being let out of prison, adjusting and whilst you are adjusting being taken back in. We have been back in hospital and home for a bit. Back and forth but wonderful to be home. Difficult mentally and emotionally to be back at the hospital. I was just waiting for the time to pass. I was counting down the days and then the hours. We left friends, four families, who have children either already in or going into palliative care. Right now, I can’t put into words what this does to you mentally.

Her: “Pam…Your English is better than mine. I want you to go be honest about what we all go through when our kids have cancer. I had a complete mental breakdown when they first told me. I couldn’t eat. I couldn’t sleep. I couldn’t function. I have PTSD and anxiety. I have panic attacks which I manage through medication and I take anti-depressants – no one else knows. I worry all the time. Just go and tell them all because not everyone is as strong as you. I want them to know how bad it is. ”

Me: I do find it hard too.

Her: you don’t show it. And you don’t take all these bloody pills.

Me: I understand. Don’t punish yourself. You’re doing a great job. I don’t show it because Daya is always watching me. And it’s getting harder to not show it. When she’s asleep it’s harder when you don’t have to pretend. I’d love to have a breakdown but I’m too lazy and tired to put all the work and effort into getting back up !!

Her: You’re funny. You’ve made me laugh all the time. I can’t cope like you.

Me: It’s ok. You’re not supposed to cope in a situation like this. It’s too much. I cry too. I’m scared too. It’s ok. The more you go through in life the tougher you become…

Her: I’m scared. Let’s stay positive.

Me: I think you need a cuddle.

You may recall the child I mentioned a few weeks back who was going to pass away. She’s gone. I wasn’t there at the time. I was home. Her parents are enduring the worst pain imaginable.

Grief isn’t something you move on from. It’s something you move forwards with. It’s in all the moments here and there. It’s in the invisible thoughts, associations and hopes that we had between us and the deceased. I’m lucky that she is still here laying next to me as I type this quickly.

My bonus baby has had some bonus months and hopefully years and years ahead thanks to all you wonderful people and the support you have given us.

We were home for a short stint and then back at the hospital. Actually being back in this time felt worse than any other time. Daya and I were both down and I just couldn’t shake the feeling so I tried to hide my feelings and keep Daya busy. Daya wasn’t ok, due to immunotherapy treatment, for a day or two and then things settled. She went into rigour again.

Anu and I are both mentally, emotionally and physically drained. We aren’t shocked, depressed, numb or elated; we are, I’m guessing, exhausted, traumatised and drained because these horrible things have been going on for such a long time and some of these things have been difficult to witness.

We are so far removed from being a normal family, getting on with normal things. Instead we are surrounded by hospitals, medics, conversations, an array of changing professionals, attention to detail, careful administration of medications, isolation…

“Nothing shocks me anymore …but disappointment…that exists”. Me, 2019

How you behave, that is to say how you communicate and interact with people says more about you than it does about them. It indicates what you think of them and what you think of yourself. Experienced nurses and doctors are often some of the best and most receptive communicators. I have learnt that this is perhaps one of the most important points of patient interaction; if you fuck this up as a medic you can do some lasting damage be it clinical or emotional. I’ve seen parents crying over how things have sometimes been handled and communicated.

You try and stay positive. You try and stay not-negative. There is no point in stepping back from any of this and reflecting as that is too painful, too big and there is no time.

Your mental health is so important to you. Look after it. Your thoughts will feed into your feelings. You body will be affected by your thoughts. It is how we are designed. Keep the right people around you and keep your mind clear. There are those in life that will strengthen you and those that will not. Ultimately what I can tell you is this, the only person that will ever keep you going is you.

“Think good thoughts.”

I don’t actually need to think good thoughts. They are all around me in my children and the things I watch them do everyday. It’s not about keeping positive like a deranged circus clown but making sure that you are not-negative. Keeping focussed on everything that you have right here and now.

Now on a different note, it’s mental health awareness week in the U.K.

Everyone has their own coping mechanisms. Mine is banter. Mine is keeping busy. Without busy I’m a bit lost. The other is talking.

I am not depressed. Depression is something far worse than what I’m feeling. I have tried to understand but I can’t begin to deeply imagine how it must feel for someone to struggle with depression everyday of their life.

It makes me sad when I hear that people I know have this. It is a deep, dark hole to get out of and not everyone does. I know someone who lost their life to depression.

PTSD, PND, anxiety, stress, panic attacks are all different mental health issues. See if you can imagine any of this for a moment. Can you recognise any in yourself? The other point to note is that we all have our different coping mechanisms and thresholds. I think in some respects I am fairly resilient and have been told I am emotionally intelligent. Yet, I too find it hard. For example, I’m finding it hard that this is all going on for so long and that we have no control over anything.

I’m no specialist or expert. But I think it’s important for us all to have the conversation and normalise mental health issues in the same way that we normalise flu and the common cold for the impact that they have on the physical body. If you are down or know someone that is then please get help or give help. It doesn’t have to be a big major event. It can just be how you feel… for no reason at all. Nothing lasts forever. There is no stigma around this. Don’t deny yourself the help you need. You are not weak. You don’t have to face things alone. If you’re down, please talk to someone. Don’t suffer in silence. We all need to destigmatise mental health issues. #mentalhealthawareness #staystrong #bekind

Sunday, Funday

Building on from yesterday’s post…

Anu and I woke up at 2:30am.

This was supposed to be my ‘better sleep’ night.

Jasmine has turned into a noctornal raver. She calls out for us at night.

“Anu….Anu…. DADDDDDDY”. She can’t hear herself so she gets louder and louder. She woke Daya up with her screaming. We took one child each. Stayed up for hours. I was shattered. Daya wouldn’t let me sleep. I decided to give her a milk feed to get some calories in given that we were awake.

She is very clingy and insists I sit next to her and that I keep my arm behind her neck. She sleeps on my side of the bed leaving me 20cm of space. We wake up at night and drink water, lick crisps, change nappies, watch the iPad, vomit and silently I determine how much more sleep I need vs how long she is going to stay awake. You can’t fight it.

Meanwhile, Jasmine was downstairs eating toast and watching Curious George.

I slept and then drove to GOSH early this Sunday morning; yes Sunday, because cancer doesn’t have a day off. The entire day I felt fatigued. We saw our wonderful nurses from Lion and Giraffe which made Daya happy. There was no Toby but we did have our favourite Sophies and ‘Ancy’ (Nancy). “I love her Mummy…I do”, she exclaimed about Sophie as she left the room.

Daya asked about her scar today. What’s this Mummy?

Me: This is your superhero scar

We were back home by lunchtime. Exhausted and I felt jet lagged. I was tucked up and asleep by 945pm. And awake again at 2:30….

We are home

What follows is an honest post about life with childhood cancer. Buckle up. This one is honest and open. Before you read on, know that we are as happy as can be and doing ok. Here comes the truth…

We are home but we aren’t all together.

Sometimes, it is all much harder than it looks.

We are home for a bit and we have been busy.

Whilst happy to be home, I have been a bit down. I don’t like to talk much when I’m tired. This is also why there hasn’t been a blog update. I have just about been barely holding myself together under the pressure of so much to do. And I am up a lot at night and sometimes for several hours with Daya or Jasmine. So is Daddy on some nights and he has a job to maintain. I am fundamentally incapable of having a complete thought when one child is demanding a snack and the other is crying due to irritability from their medications. Add to that the routine of medications and milk feeds which all need to be on time… I’m not a mother. I’m a nurse.

You might say we are strong or that you guys are doing such a good job. Yes yes yes. But let’s be very, very honest…we are exhausted and depleted. We aren’t doing as good a job as we could be because life just doesn’t work like that when you’re in the shit-storm that we are facing.

Because we are STILL going through cancer treatment. We still have the fear of surprises; the fear that after all of this we could still lose her. I feel I have been at war for too long. Too long. The treatment hasn’t ended for us. I say us because it is not just her. She’s had an awful time. As an adult you manage yourself through cancer. When it’s such a young child you have to parent them through. You have to deal with tantrums and pain induced by medications. I’ve been holding sick bowls and changing bed sheets several times a day. She vomits through her nose as well. I stick her NG tube back down on to her face with little stickers. I count her calories. I sit next to her for hours on end. I rush to the hospital to have her NG tube put back down. This means I can’t be with Jasmine. Jasmine cries for me if she sees me; for the mother that is present but isn’t mothering her. Daya isn’t used to having her siblings around and finds them noisy. She is drained and weak. I can see her spine through her skin. Her hips and shoulder blades are poking out. Her body can’t tolerate her feeds well enough to gain weight; it’s been through so much.

2017 is when we started. I’m glad she is still here and sharing life with us. I’m heartbroken at what she and we have been through. I’m thankful to everyone that has valued kindness and supported us through this journey. And I’m thankful at those that appreciate my honesty. This is awfully hard. Nothing happens in our lives other than this. Sheer existence is exhausting. The grind of the everyday and the medical conversations and treatment sucks all the moments out of you. It’s not fun. You try and smile and be happy for the sake of the kids. But it never leaves you. I’m too busy all the time.

We are both mentally, physically and emotionally drained. Admitting this doesn’t make me a weak person and it doesn’t define me. This will all pass by soon enough or eventually. What we need at the end of it is to have won this great battle. I don’t know many who have.

May is mental health awareness month so I want to highlight that this is relevant and real. I don’t meditate. I don’t see a counsellor every few weeks. I don’t go out for coffee or get to sit with friends. It’s lonely. We haven’t celebrated anything all the way through. I don’t spend time with Anu. We don’t have dinner together. We barely live in the same house at the same time. We are known as the parents that do a ‘handover’ at the hospital and then one of us leaves. And there you have it. I’ve been quietly managing my mental and emotional health for such a long time in order to ‘keep my shit together’ and to ensure my kids are well cared for. So does Daddy. I’ve forgotten how much energy it takes. My adrenalin is low. My fear is high. My hope is higher. My body aches. And now I realise that what we ‘Childhood Cancer parents’ go through is very, very traumatic most of the time. NY was traumatic for me. You may have noticed I haven’t discussed it since it happened. For two reasons (1) it was traumatic for me and (2) life keeps moving forwards very quickly.

Everyday is a reminder that your child might not make it and everyday you need to have the strength to say not yet, not us, keep going, don’t think about it. There are days when children die from the same cancer as yours or your treatment feels like it’s dragging on and then you feel vulnerable and scared. You ask yourself if it’s just a matter of time until it’s your turn or will you get lucky. And frankly when you feel so unlucky, at having to be in this situation in the first place, you realise yes the odds are still shit.

We all know that the world isn’t without its self-serving idiots. I’ve actually reached a point where I’m….completely and utterly intolerant to lip-service from jobsworths, box tickers, self-serving assholes, those who show a disregard, who don’t speak up and other people’s bullshit behaviour. What was ok before is not ok now. That which was politely tolerated will not be. You aren’t welcome to dine at my table if you didn’t have the decency to lend me an umbrella during the storm. I won’t let you get away with anything I think is wrong. If I don’t like what you’re doing and it affects my child we are going to talk about it. I will hold you accountable for your part in my/our journey. My perspective and my reality is so far removed from the trivial day to day that I cannot be bogged down by trivial day to day bullshit. I still believe in kindness and in good people.

One of our doctors said ‘you’re an excellent advocate for your child’. Whilst thankful for the supportive comment, I’m tired of being the person that has to have ‘medical’ conversations. I don’t want to be around so many different people. I also don’t want to be doing so many medical things for my child nearly all the time. I don’t get a break. She’s asked me to put cream on her no less than sixty times in the last two hours because her skin is dry and itchy. I don’t mind. I love her but managing the side effects of treatment is tiring.

Having lived at the hospital for so long, I’m going to find it difficult to go back for our next round of immunotherapy. I don’t want to go back. I love love love the NHS. I love our nurses but I just don’t want to be there anymore. It kills my soul. It drains me. I don’t want to go back and find out that another kid won’t make it.

Rather than stop and blog….or stop and shower or stop and rest…I’ve been doing something medical almost every half hour of the day for Daya and trying to squeeze the other two in around this. Daddy and I are just existing to service everyone else’s needs. And I’m tired. So I haven’t been able to blog. I’m sorry for that. My physical health is under strain so I’m looking after my mental health. Keeping on top of everything is a military style operation. Managing her behaviour on these medications is stressful and demanding.

Jasmine has been so happy to see us home she hasn’t slept at her usual time for days. She’s overjoyed. It also means one more kid is awake during nap time. It’s been a non stop party for her. Then she’ll suddenly slump and get tired just before her bed time and it’s all tears and inconsolability. She still needs a day time nap. It’s been wonderful to watch her. She’s grown a lot since I last saw her. She’s a funny little character. I enjoy watching her mannerisms. She’s a very happy little human. I feel like a visitor as I watch her, which pains me, but I’m glad to be home and she’s been well nurtured and loved.

She doesn’t want to miss out on anything. She has been following Daya around and spontaneously kissed her on the cheek when they were side by side on the sofa. Daddy has also been home for part of the bank holiday so Jasmine has had a lot of fun. She is everywhere he goes. She follows him all day.

Anaya has been great. Painting, colouring, running around the garden, cuddling her sisters and sometimes arguing about what to watch on tv. She’s happy Daya is back home. She desperately wants her to get better and for this to be over.

Keeping Daya steady has been a very intensive full time job alongside the other two. It’s been a draining time. She cannot go out into the sun due to skin sensitivity. This has arisen from some of the medications she is on. She has a full sleeved top, baseball cap and sun shade; she’s like E.T in summer.

I am doing everything I can for the kids and always something for someone else all day. It’s not fun. It’s exhausting. It is not something you can dip in and out of either. You have to be fully committed. Everything is time dependent.

This is last night’s bundle of meds for a two hour period. She has a sensitive gut right now so I have three sick bowls on hand and have to carefully plan out her entire day to ensure she doesn’t vomit up her meds or her calories. Right now everything needs to stay in. She vomits several times a day. She gets frustrated too. She demands a lot of attention. Sometimes she says things that make no sense. She gets frustrated easily. This is not the girl we know.

The nurses do their work at work and then they go home to their families. The doctors make their decisions and leave.

We, ‘Cancer parents’ are the ones that do all this stuff at home as well as at the hospital. A lot of parents have to deal with a lot. Some have it harder than others at different times.

‘Oh twins eh, double trouble….Oh you never get a break eh, but that’s what parentings about. I wouldn’t want to be you though eh!’ Yep you have no idea you idiot.

People joke that I must be like a nurse now. It is not funny. Or that I’m a full-time carer. Yes. Yes I am but to which child? And I don’t want to ‘care’ I want to ‘mother’. Believe me, there is a difference. I’m so efficient I have a spreadsheet printed on the fridge of all the meds and feeds and when to give them. I keep everything in a notebook so that I can update the dietician and track my own progress carefully. I’ve planned everything else so it’s works as well as possible.

Her medications make her irritable and emotional. She becomes even more needy or demanding. She’s awake at all hours or she’s awake early. I am doing things from 3/4/5am until midnight. If I’m lucky I’ll sleep a few hours between from 11-6 on the days Daddy takes over. Welcome to childhood cancer.

Daya doesn’t care if she cries in the middle of the night and wakes everyone else up in order to get what she needs. I do. Daddy needs to go to work and Anaya needs to go to school.

She has very, very dry skin and is itching all night. She is creamed and oiled many many times a day and night. She hates it. She fights me on it. Her skin is scratched and like sandpaper. She can vomit up a full feed as though nothing has happened. She is un-phased by vomiting. I’ve been kicked and slapped. I want. I want. I want. I want Fireman Sam please right now. I want to go upstairs. I want to go downstairs. I want you. I want you. I want something eat. I want water. I want you. I want you all day long. A side effect of one of the medications is irritability. You have to remind yourself that this is just the meds and the irritability talking and not her. Usually she is a calm character. Now she is very clingy.

Yes there are days when I’ve just had enough of doing things and staying on top of everything. There are hours and minutes when I’ve just had enough.

But this won’t last forever.

Parenting is hard. Twins is hard work. Parenting in this situation is even harder.

For me, I’m grateful for all of the time we have together. I just want them to survive. I want Daya as far removed from the hospital and cancer treatment as possible. I want her running around freely without a multitude of side effects to manage. With a cancer that has a high relapse rate like ours you live under an eternal cloud of fear. Will it come back? Why? How is this possible? Have we done everything? How do we save our child….she can’t go through much more. Even to myself, I sound like a broken record. You push these thoughts to one side and you just carry on doing this. Carry on working and providing them with happy childhoods and stability. I do sound like a broken record and that’s because this shit situation is STILL dragging on. I’m still on the train sometimes drowning and sometimes singing as we go. You often wonder how much you’re kidding yourselves about the survival rates. Let me tell you something, sometimes survival rates they don’t matter because you never know which side of the percentage you’re going to fall on until it’s done.

Having lived on the ward for so long, I am very aware of far too many children that have died too soon. It’s become normal. It still hurts me.

Before I stepped into this world it would have been normal to never ever experience a child dying in my lifetime. That would have been normal and perfectly acceptable.

Our family life has been completely shattered by all of this. It has destroyed us as parents. It’s taken everything out of us. We have been running on empty for so long. Sometimes my heart breaks for my children; they don’t have a mother who can whisk them away to somewhere nice (with or without Daya’s Hickman Line) because I’m too tired and drained. Circumstances prevail and it won’t happen. However, thankfully they are still having fun and smiling.

All of the above is just some of what we deal with. It is hard. We keep strong and stay positive.

It takes a strong mind to hold your shit together when all you want to do is leave and go hibernate somewhere warm on a beach with a be a cold drink and a good book.

I’m not into slogan tshirts but here is one I bought recently. Need to keep reminding myself of who we are and who we need to be

And I still believe my girl is going to make it. Anything else isn’t something I can consider right now.

If you made it this far into the post, then…thank you for taking the time to try and understand what life is like on the other side. Follow our lead. Stay strong. Keep positive. As Nani said, ‘you never laugh or cry for more than a few moments’.

You’ve got this, I’ve got you

Jasmine,

I don’t know if it is possible for you to feel how much I’m bursting with pride when I tell you how proud I am of you. I am thankful that you are a determined little character who is progressing into an independent and capable toddler. I love watching you.

You’re a wonderful thing to behold. You are funny. You are curious. You are into and out of everything all day. You have a sharp mind and a wicked laugh. You are thoughtful. You miss Daya and you are assertive and kind. You’re a tough little thing Jasmine.

I remember the small weak sick little bird I brought home. We nearly lost you twice. Now you’re strutting all over the place. They said you wouldn’t sit for another year or maybe by this stage you would ‘maybe just about be sitting up with support’. This weekend, you were toddling around in the garden with a water pistol in each hand squirting your Daddy.

You can’t hear without your cochlear processors. When I came home you wobbled up to me and said ‘Mummy’. You took my breath away. I cried. You said and signed mummy crying. I signed Mummy happy and Mummy loves you.

Every time I left that audiology hospital I would cry. I’d curse the whole situation and it was horrible. I hated it.

When she said I shouldn’t take you swimming and you’re unlikely to walk for many many year or maybe never, I broke down in the waiting room.

I had to come home and tell Daddy. He nodded quietly. Daddy took you swimming a few months ago. I’ll be taking you swimming too.

I told Nani. ‘What does she know…that woman doesn’t have the right to tell us what she can and can’t do. We will get her to walk. You don’t write-off a human being like this’.

We had you sitting up with support. Then you would drag your legs behind you and would use your arms to pull yourself along. You wanted to move. You saw Daya walking. Eventually I would lift your foot up but you would not have any idea what to do with it. I moved your legs and feet one at a time. One by one. You realised that the floor would give you stability. I held you. We did it together. One day I let go and you fell. I caught you mid-air and swung you around to pretend it was a game. I felt bad. I decided one day I would need to let you fall. You didn’t need a lesson in gravity but a lesson in positioning. You’re like an astronaut in space but on earth.

One day you stood up. You didn’t move. I would make you stand next to the sofa between my legs. You didn’t move but you started to carry your own weight. You started to stand on the spot. Eventually after much work, I made you walk to me. You couldn’t hear us but you saw us. We cheered so much the day you took your first step into my arms. You smiled when you saw how excited we were. Next, Nani and I would sit on the floor and pass you back and forth between us. I saw you holding furniture and navigating around. I saw fear in your eyes when you didn’t have something to hold on to but you wanted to move…one day you looked for something to hold, I saw fear in your eyes and it hurt me. I’ll never forget the look or the moment. But I didn’t step in. I watched from the kitchen as you let go of the side table and bounded to the dining chair. I needed to understand what would happen and how I could support you to get to the next level. You made a dash for it. You wobbled badly but you made it. It was two steps. You were relieved as I was.

We have a long way to go but you are fearless.

We have played with you everyday. We have played to the point of exhaustion. This was in order to develop your strength and mobility. I want you to play and be happy all your life. I feel I have missed much of these years with you.

Know one thing, you deserve the best. You’re a very good person. You are kind. As long as I’m here, ‘I’ve got you’ on everything. Mummy bear will give the smack-down-swipe to anyone that messes with you. And I’ll be beside you until you want to lead the way and then I’ll behind you (like a stalker lurking in the bushes!). I love you and you’ve made my life a better place Every little cell in your body is filled with love and strength. You’re formidable. You inspire me. Thank you.