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’.