Talk to me

I have been meaning to blog for a while. We had Vega’s first follow up at the Marsden and I wanted to keep you all updated. But life was so good, so sweet without ever thinking about needles and bloods and cancer. Vega was feeling really good. She has a very spotty face, and her legs remain tired and stumbly but she was really happy. She talks a lot, a constant flow of words, commentating all and everything. She is so witty and funny. It is really sad, thinking about it, because for sure this part of herself has been in there all along but now it becomes apparent that she just was too bloody tired to be herself these last years. We thought she was a quiet person, instead we now realise what a huge impact the chemo had on her, other than what we could see every day anyway.

Her first follow up visit at the Marsden was our quickest ever visit. Appointment at 10.15, out by 10.30. Our consultant just had a quick chat with us and we were out. Her follow ups now alternate, six weekly, between the Marsden and Kings. Being at the Marsden made me sad- now more than ever, as I walk in with a happy Vega. There is so much misery there, the kids and parents suffer so much, the air is thick with worry. Being off treatment for just a few weeks, it still feels like an eternity since I walked the halls, carrying a bloated, steroidal, poisoned Vega. But I did and so I understand what it feels like. I wish I would never have to go to the Marsden ever again, never take Vega to that place again.

But as it turns out, recovery from treatment is not as straight forward as I imagined it. I am writing from Kings again actually, as Vega was admitted yesterday with yet another fever. Less than four weeks since our last admission and we are back here with pretty much the same symptoms, fever, cough, vomiting.  Her cough was bad enough for the ward to send us to A&E x-ray department last night, where we mingled with a few drunks and people that looked absolutely fine and complained about the wait. Chest x-ray looked like a chest infection so up go the antibiotics. Vega still has a fever and is vomiting but when the paracetamol is working she is pretty happy.

Another fever, another admission and my ability to remain positive started to falter. When we were here last time, all the girls were ill, there was no doubt in my mind that this very likely is a viral something or other. Yesterday though, everyone was fine except Vega. I guess I don’t have to chastise myself for jumping straight to the worst conclusion. Although I don’t talk about it, write about it, think about it… I am so scared about the possibility of a relapse.

While we are incarcerated I have been thinking about it a lot. Why it scares me so much. Sure, the most obvious reason is that once you get cancer for the second time, your chances of beating it are statistically smaller. Also the fact, that once you have done it, you know what to expect and that makes the whole thing almost worse than it was the first time round. There is also the fact that treatment would have to be more aggressive, hence worse side effects.

But it is none of those things that scares the living daylight out of me. Vega getting Leukaemia, maybe it was fate, destiny. And she was meant to make it through, for all of us to live through it and maybe to become something. (Not sure what) But getting it again, the cancer coming back…

I am worried that I would just give up. That we are toying with fate and that clearly she wasn’t meant to be. That we are pushing her body, through treatment after treatment, only prolonging her miserable life, unable to accept the inevitable. This is what I am so scared of. These thoughts, which are so irrelevant really, because she is well, she is better, and yet I worry so, I fear them so.

I also realise that the antidote to these fears is time. So I have to be patient. Meanwhile I have to talk about it. With our nurses and doctors, about what can be expected during these early months after treatment. I learned today that kids are in ALL THE TIME after completing treatment. Their immune systems are still vulnerable and weak, not having dealt with anything during the course of the treatment without being washed out with antibiotics, antifungals, antivirals. It made me feel tremendously better.

I don’t want statistics. I want reassurance without being mollycoddled. I want to be listened to without people being shocked about the obvious morbidity. I want it understood that I am not drawing “the devil on the wall” but that these thoughts and fears are a normal response to the kind of trauma we have lived through. Writing things down helps, saying them out loud helps. It makes me realise that I am strong.

Here is a picture that makes me so strong, every time I look at it. Many of you have seen it but just for this blog post it is very important to show it again. Vega so very happy, as she is at the moment (well last week anyway). A recovery I would have never thought possible in such a short amount of time.

Vega wet

 

Now, time to find a really happy looking picture of myself.