Whatever life throws at you, find perspective as quickly as you can. Without that you will have no sense of the distance you need to travel.
And even if you choose to swim, there will be days when you are too tired. When you stop and feel like you’re going to drown. There will be days when you don’t have the strength and you can’t see over the waves. You can’t predict the storm and you may not always have a ship on the horizon but you need to believe that there is a way through. You won’t always choose the right path, or what seems like the right path at the time, but life is short so make sure you are moving towards a better path.
Learn about yourself as quickly as you can, some might take a life time and still not know who they are or how they became that person. It matters, simply because it determines how you behave and how much you accept. It will free you up of your insecurities and it will free you up to focus on what matters.
Nasty people don’t matter. The are beneath you. And they will always try and pull you down.
If you are good, good people will always be there, no matter what.
Spend more time with your loved ones. If one day you have to swim, you won’t have enough time or energy for them. And your kids will grow up with or without you there. It’s best you are there when you can be.
Good doctors and nurses will always take care of your loved ones without being asked. They already know what’s required of them. They put people before their careers. They put their passion for the profession first. You will never have to ask twice. If you don’t get what you think you need, ask questions. It may not be the right request at the time but you will learn something none the less. And fight for what you must get. Remember, I love the NHS. I love it with full force. I’ve personally had some good and bad experiences for myself and for my kids. I am not blinkered. I am aware. I’ve encountered amazing doctors and nurses and I can assure you that the ‘useless’ ones stand out a mile even to their own peers. They don’t get to stay long. Speak your truth. The good will welcome it. That’s all you need to do.
We have been home a few days and it’s been difficult. An adjustment is still taking place.
It’s great to be home but it’s also hard to adjust to being home. We have been through something very difficult. Very, very difficult. And it is not the end. It just a part of the journey. The ‘work load’ was bad enough, now it has increased significantly. Daya’s recovery requires more intensive care and support for her, Jasmine needs all her support to continue and increase (she has a long list too, although it isn’t cancer, it’s still very important) and Anaya needs all the things a 5 year old in half-term needs. The truth is we can’t take her anywhere or do anything at present due to the demands of the other two. However, we are enjoying being home together. And we are enjoying Lego…
Jasmine wanted to go to the park with Daddy the day after we came home. I said I’d briefly take Daya too. As we walked out the door and turned a corner, I could see all that was familiar before me and I started fighting back tears. I feel like I’ve been away. I feel as though I’ve missed everything at home. And I feel as though I haven’t come back the same. It wasn’t easy. It never is. I have watched my child suffer and I don’t know if she will survive. No one does. I still don’t know if we have done everything we could possibly do. I don’t know if it’s enough. And if it is, then why can’t she just be ok by now. Everything is the same at home, but I’m different.
‘Oh you’re back, have you unpacked? Have you had a good rest?’
What I wanted to say: are you
fucking kidding me.
What I said: no I haven’t unpacked.
It was not a rest at all. Most people struggle to cope with an only-child that has cancer. I have three kids and very little practical support. Cancer is difficult no matter how many kids you have. I don’t think I need to say much more. No, we didn’t have anyone taking turns with us at the hospital. She’s still very young so needs constant parental supervision so she wasn’t left alone for the nurses to take care of her. No, it wasn’t a rest or a holiday. It wasn’t a shopping trip or sightseeing. ‘No I haven’t unpacked’. It’s been full on since we got back on little to no sleep.
I’m finding the relentlessness is too much for me right now as I haven’t slept well. I didn’t sleep enough there, not on the flight back or at home. She wakes up a lot. I’m exhausted. I’m avoiding people right now and in turn conversations. They will ask me questions, I don’t want to re-live anything. If you hug me, I might cry. And I’m afraid, I will struggle to contain it.
The most beautiful thing about being home is that I have cuddles with my kids. That I can hear their laughter. Their antics fill my days with joy. I can smell their hair. Watch them dance around and talk about everything and anything. That sound of their just being around is wonderful. Anaya seems different. A bit more grown up. She’s relaxed and settled. Shes missed us. Jasmine is a powerhouse. She’s always happy. Beavering away and exploring. She’s very interactive and fun. She brings so much joy to our home. Anaya is dancing around the house and makes me think about things when she asks questions.
And Daya…Daya is weak, tired and happy to be home. There’s not much coming out of Daya. I lost something in Daya after high-dose chemotherapy. She’s not been the same since. With all the other chemotherapies she bounced back. After high dose, a few small switches turned off and they haven’t turned back on. She’s physically withdrawn. She’s tired. She’s lost her spark – both physically and in terms of her personality. However, I hope when she physically comes back that she will be back to herself. Things will take time. And I hope she comes back to us in time. She’s happy to be home. She’s happy to be with her sister. Anaya is happy to have her home.
Daya has been getting lots of cuddles from Anaya.
Daddy and Jasmine looked for ‘the cat’ under the cars.
Jasmine watched Anaya with her Lego.
We remain grateful that we got the primary tumour out. We remain grateful that we came back with her. We remain grateful to be home. I am thankful to have my family back together.