Asking for Help

Your health is your wealth.

My God but this is so freaking true. Most people take their health for granted until something happens and they realize how good it feels to be well.

But I wonder if many people include their mental health in that scenario. I didn't. Honestly I never even considered my mental health as I have been lucky enough not to be touched by too much stress or anxiety (apart from some stress due to infertility treatment) until my child was diagnosed with leukaemia. And it certainly never occurred to me that all of the fear, stress, anger and grief would come back and smack me in the face now that Chloe is in remission, discharged from the Bone Marrow Transplant Unit and living a relatively normal life at home.

It is only now that I see how important good mental health is and how adversely bad mental health can impact our lives.
That's one of the main reasons I've chosen to speak to a professional alongside my husband. Its okay to ask for help. In fact it is essential to ask. If everything is getting on top of you just reach out. It doesn't have to be to a professional.  But don't leave it and let it worsen if you can.

We did leave it for a while until we realised that the anxiety we were feeling was growing.  We knew we needed help. Instead of feeling safe our minds were focusing on the chance of relapse and its terrible implications for Chloe instead of how well and strong she was getting.

People have told us how strong we are and they don't know how we got through it.

But it isn't about strength. In the moment it is simply survival. There wasn't a moment to catch our breaths during diagnosis and treatment. Chloe got that sick that fast and was so young (3 months old) that between nursing her, changing nappies, cleaning up vomit, between doctors, nurses, specialists and everyone else involved coming and going we just lived in the moment.
And now that Chloe is better and we are at home, now that everything has slowed down and is getting back to normal, now the worry sets in. Even though she is well and getting better and stronger all the time.

Really I think to myself, I have no reason to feel this sometimes all encroaching fear and anxiety.

But I do. So does my husband. Because until we get Chloe through her first year of remission she runs a huge risk if she relapses.

The people who have this specific and rare type or leukaemia (AML Translocative 8-16) have pretty much no chance of surviving a relapse within the first year of remission. There is just no treatment to save my one year old if she gets it back. And that is why the fear, anger, anxiety and grief remain.
We have just three more months of the first year left. That's not much time right? But it is dragging out now.

The fear of losing her ebbs and flows. Sometimes I am crippled with fear. I only let myself think about it at night when Chloe is asleep so she will never feel any negative energy from her Mamma. I want her only to feel happiness, love, and pride.

Sometimes it is just too hard to remain positive and see how good things are once we let these negative thoughts in especially when we hear of others we may have met or who had treatment at the same time as Chloe who lose their child to this horrible disease. It makes us realise it can come back any time.

That is Terrifying.

Also after having watched our baby become so sick we had wondered if she would pull through treatment, the idea that she would have to do it all again is not a reality we want.

I do experience frustration and even anger that Chloe has missed a bulk of her babyhood, she cannot be around other babies and must be isolated. I sometimes let myself feel lonely. It is during these times that I wish with all of my heart to have our family closer. Living on the far side of the world to Ireland has its pitfalls at times like these. I know my husband feels the same. It can be so very hard. But we are here in Auckland, New Zealand and it is home for us.

Those moments of fear and anxiety do not happen all of the time.

Mostly I can redirect my thoughts and think about just how well she is.  She is getting her double lumen hickman line (central iv line) removed from her chest next week, all going to plan.

Her bloods have been entirely clear of cancer since going into remission.

She is gaining weight if not growing taller (a side effect of chemo but our oncologists have seen this before and other patients begin to grow after some time has passed so we are not concerned at the moment), she is developing her personality into a little cheeky chops and a sweetheart, her mobility is increasing all of the time.

Okay so she has oral aversion and it is next to impossible to get food into her. She is fed pretty much entirely through a tube. But on the plus side her medication is decreasing, her GVHD (Graft v Host Disease) of the skin is managed and not too bad. She is cruising along nicely.

Once we get past this fearful first year I think we can take a bit of a breath and get ready for whatever is coming after that.
I hope anyone reading this with some issue of their own can reach out if they need the help or if they want to talk. It is okay to admit things are not perfect. It is okay not to be okay.

It is okay to struggle. Just as long as you can see the struggle for what it is and work to overcome or gain control over it.

Health is wealth and mental health is gold.



New Zealand National Helplines:

Cancer Society line:
0800 226 237

Leukemia and Blood Cancer NZ:
0800 15 10 15

Lifeline:
0800 543354

Depression Helpline:
0800 111 757

Youthline:
0800 376 633