Up and Down

“Up” Day

Thank you for all your replies to my last blog post. I had more than I ever had, off and online. I have said to a few of you that I usually blog on days when I am particularly down, or even up. I condense everything down to that one blog post, distill my general mood and so you get the essence.

Some of you know that I once was well on the way to become a therapist myself. The blog has become an important therapeutic tool to me, you my readers have become my witnesses. I have said before that I rarely reply to comments, but I do read, appreciate and take them in. Even if I moan or question, I do not always look for empathy or answers. I am merely emptying myself of the concern and seeing something in black and white can change a perspective quite significantly.

Vega is getting on with Maintenance. I am not feeling comfortable with it yet, but I can see that I might in the future. It has only been three weeks after all. Last weeks bloods had me in a spin because they were so high (I am talking neutrophils here, 6.91) and today’s bloods were really low (0.44). Neutropenia again and I will have to think about sending her to nursery tomorrow. This is the reason of my dis-comfort, I am not sure what we are at. When I spoke to our onco nurse last week she said that doses would not be adjusted too much this cycle because they needed to see first how this level of chemo is affecting her counts. But the dose should be reduced if counts fall below 0.5. I will probably get a call tomorrow and find out what is going to happen. Vega is also due her intrathecal chemotherapy on Wednesday and that is always hard on the system so counts would be expected to drop even more.

Anyway, Vega is feeling really good. Her hair is coming back big time and she now looks like a little fuzzy Kiwi with super douper eyebrows. She is running (kind of, with a little limp) and is enjoying nursery- she managed to go every day last week.

Because Vega is immuno compromised, we all had to get the flu jab this year. Lyra cried for the entire way to the doctors and for nearly 30min after, Alys didn’t seem to have even noticed and Vega was probably the calmest, most cooperative three year old they have ever seen. She is so cool with all of this, her sense of the necessity of all of this admirable.
During these last few weeks she has spoken more about the events of the last few months. I don’t know if it is because she is getting older, or she is feeling better and this relief allows her to process some of the trauma. She randomly started talking about our transfer from Kings to the Marsden the day after she was diagnosed a few weeks ago. The transfer was in an ambulance, with blue lights and siren, Vega on the stretcher, IV fluids and all. I was sitting opposite her, together with our oncology nurse Kat, and one of the paramedics was sitting next to Vega. I cried for nearly the whole hour that it took, the shock still so new and the situation seemed so acute, being transferred with blue lights on. I kept thinking how many times I see ambulances driving through London and wondered how many of those had little children in it, diagnosed with cancer and a crying parent by their side. Vega fell asleep despite the noise and her little head kept bobbing and dropping to the side. The paramedic just put his hand on her cheek, really softly and held her head for the entire journey. Strange the things we remember.
Vega also remembers and told me then that she found it very scary. She told me about the lights being noisy and that she would have liked to sit on my lap. She also said she never wanted to do it again. She also said she doesn’t ever want to go to hospital again. And that she doesn’t like needles. And yet still, she barely flinches when she gets a flu jab, doesn’t fuss when her port is accessed.
I guess she is so much like me, having up days and down days. Distilling information and letting go of it so she can deal with whatever comes next.

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3 thoughts on “Up and Down

  1. You are so articulate in expressing what you are going through. I like to read to find out how you are all doing as when we see you, you are always putting on such a brave face for the benefit of the girls (now THAT is admirable, too). It’s good to get your worries out into the open, to share them so we can respond and you can know that you are not entirely alone. I hope that Vega “feeling good” is going to be something that happens more and more and soon. All our love.

  2. Oh my love – how beautifully you write – the poignancy of the moments that add up to hours to weeks. gosh i identify with those little moments – the strange things remembered and like you i am acutely aware now of ambulances and hospital transport. The tenderness of a nurses hand holds so much, especially when you are in shock!

    It brings me a little comfort to know that i am among many who can be witness to your developing story – holding the ups and downs of blood counts and needles and worries and tears and rants n raves n all the friggin storm tossed raging emotions that life with cancer takes you through. I am smiling at the thought of vega’s fuzziness and gorgeous eyebrows!! i loved when my hair regrew and touching my head (till the curls came – yes i know you liked them, but the last month they went into a dry frizzy mop!).

    i am pondering your comment about ‘once’ being on the way to being a therapist – and my own musings of what it really means to be a therapist after 20 years of practice. i have come to a much much deeper conviction that to really be a therapist you need to authentically accompany someone through the depths of their being – and whilst you would never have wished this as part of a training (god who would!!) your capacity to feel, endure and find words at the end of it all – to stay alive despite the batterings – to love and care so deeply, is more than any training could offer or expect. So i hereby duly confer upon you the grand title of Kathi Palitz LMT (life movement therapist) with a noted distinction for your blog thesis on the story of little baldylocks! you were a pleasure and a privilege to have taught and you continue to inspire and humble me and for that i am truly grateful.

    I can say with all sincerity that i would much rather have you at my side than half of the therapists i know – so keep on pouring out those words for us to witness.
    love as always xxxxxxxxxxxxx

  3. It was so nice to see a picture of Vega doing such an ordinary thing. Like you said earlier on, it’s the ordinary things that people take for granted when their children are healthy. I wish I lived closer and could help pick Lyra up from school for you or drop her off in the morning, it must be hard work getting all three ready in the morning. Please let me know if there’s anything I can help with. You could drop the others off here if Vega needs to go into hospital and you just want to deal with her on her own. I pick Grace up at 3pm and Joseph “Joschka” is at nursery across the road from 9.10 to 11.45, so just let me know. Other than that, I’m home all day.
    Love,
    Shirley

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