It is completely normal to feel like you've been run over by a truck! Like your heart has been torn out of your chest. Heartache follows closely by anxiety, anger and even guilt. These are all very normal emotions and they will come in waves or even hit you when you least expect.
If you have a significant other, lean on them. You are each others strentgth. Talk to one another, share your feelings. Don't expect the other to know how you are feeling. Remember their life has been affected too. Be kind to one another.
If you have a family member or friend that you trust (that is your person), lean on them. This journey is not to be walked alone.
It's normal to want to shut out the world. Close the curtains, lock the doors and put your phone/s on silent. And that's okay. Do it. Have some alone time with just your family, everyone else can wait. They will understand and if they don't, that is not your concern. Others need to reaslise that your lives have been for ever affected by childhood cancer.
Sharing your journey comes on your terms, when you are ready and some days are easier than others.
You'll be surprised how much kids know and how sensitive they are to their sibling's cancer journey. It's not easy but you have to keep them at the forefront of your thinking too. They matter, they're here living this new normal with you. Set aside some one on one time (each) - you don't have to just talk about cancer, you can ask them about their day. How their friends are. Ask what they want to do. This is an evolving conversation and one that takes patience, love and understanding. And through understanding you might even help them feel loved and they may just want to help more or be more involved in the decion making.
Creating connections with those that are on the childhood cancer journey are actually a lot easier than it is to maintain relationships with your "old life." You will realise quickly who will stay and who will distance themselves. It's a necessary part of the journey and one that I've come to terms with. Don't feel upset (for long), it'a blessing in disguise. Remember your focus is your family.
There are many Facebook groups that you can join and there is a Starship page for parents in New Zealand -please contact us if you wish to connect. All these pages share a wealth of knowledge and real life experiences and are very safe environments.
This means living in the now. It means taking it all in and enjoying the gift of life. It means being grateful for the people in your life and the connections you make along the journey. There will be days and even moments in your days where you feel immense sadness, anger or exhaustion and that's okay! Feel it. This tells you, you are alive. You're allowed to feel.
Don't be afraid to ask questions. Ask your doctors, nurses, play specialist, other health professionals. Your GP may be able to help in some circumstances. Ask other parents - there are so many other families affected by childhood cancer, you'll be relieved to connect with someone who has already been through or is going through a similar experience.
Never be afraid to put your family first. Keep visits to a minimum or just flatly say NO. From day 1 of diagnosis your family lives in a bubble because infection is a very real threat.
We can't stress enough the importance of education. It can be overwhelming but can also be therapeutic and in a world where you feel out of control, educating yourself on the disease etc allows you to gain some control back. But education doesn't just come from Dr Google or even the professionals, a lot of it comes from real life experience. Whether it's your own journey or someone elses. Reach out to other parents, groups, specific charities and keep going.
As a parent it's heartwrenching to watch your child be sick or in pain or just not be moving and there are many variables that attribute to their side effects of treatment. But our job (besides the cleanup) is to remain strong, calm, considerate of their needs. It's tough, it really is but they need us to keep it together.
Crying is good. It's okay to have a long shower and cry. It needs to be done and often. YOU ARE NOT ALONE.
Asking for help is a strength not a weakness. It may take time or it may not, but people do genuinely want to help - most times they just don't know how to approach the situation. So coming out and saying "hey I need you, or can you do this" actually makes them feel like they're doing something worthwhile.
Give it a go - ask for help.
