Honk for Hair

It has been a while, hasn’t it? If the blog acts as a representation of our relationship with Vega’s illness- nothing has happened. From a cancer point of view that is fab news, for a blog it borders on reader neglect.

Today, Vega was discharged from the oncology team at the Marsden and moved to the long term follow up clinic. That is certainly worth an update on the blog so here it is!

Moving to follow up is huge. Vega is now officially cured, at least according to our patient file at the Marsden. We are jumping the gun a little, because her real ‘cured’ date only happens next year in May, when she will be five years in remission, but because we are seen at the Marsden in May and November, we have now entered the once a year schedule and our next appointment will only be due November 2019, which is a year from now and so we are moving to follow up care only and are being discharged from oncology and yes, she is cured. (Try saying all that in one breath and you know how I feel)

Vega has been very well for a long time now and obviously this newly acquired cured label realistically doesn’t make any difference to her, but hearing the doctor say

“The chances of the Leukaemia coming back at this point are almost the same as that of a person who has never had Leukaemia.”

feels pretty awesome. Vega felt it too and proceeded to ceremoniously give me a big ass high five, right there and then.

I am adding another milestone to my journey; committing another memory to a long list of memories that I never could or want to forget.

The list is long and has as many horrible gruesome entries as it has wonderful cherish-able ones.  Sitting for a few hours in the packed (makes it hard) waiting room of the outpatient clinic at the Marsden, I am given plenty of opportunity to cycle through my list. I can clearly identify the stages of treatment that most children are in- the sick, haggard, shuffling stage. The fat, angry steroid stage. The hair growing back, hopeful stage. Vega and I are at the you wouldn’t know stage, and I remember how I envied that stage and how hopeful it made me feel seeing those families when we were in the crappier days of treatment.

Moving into long term follow up, we are heading away from this, as the clinic is held on different days, when only the really well kids will occupy the waiting room. The ones that made it. We are moving on to long term thinking and hoping, blue sky. I still, and will never stop, feel so so lucky. And thankful.

Driving home, the radio provides a suitable soundtrack by playing Staying Alive by the Bee Gees. A bus in front of us has a big sign on the back, in aid of Movember I think, saying “Honk if you are hairy”. Vega tells me to honk. Why, I ask? Because I have hair she says. It strikes me that this still feels like something special to her, hair not being something she takes for granted. After all these years. We talk about it, her baldness back then, no eyebrows or anything, and how she still has all her pre-chemo hair in a tin at the end of her bed. She says she can’t even open it anymore, it is so stuck with age, which puts a real timescale on her little life, and what a big long part this illness and recovery has had in it and I feel myself well up. The radio tops it off with Thank You by Alanis Morrisette and I have an overwhelming feeling that we have just completed a big chunk of healing.

Luckily, Simply the Best by Tina Turner was up next and I couldn’t have agreed more.

4 thoughts on “Honk for Hair

  1. So happy for Vega and you and the family! Amazing. Max is soon 3 years off treatment and healthy. We’ve just moved to Sweden a few months ago and we were just at our first follow up appointment at the Swedish hospital last week. Telling them about it all brought it all back a bit but also made me think how far we’ve come from that horrendous time! Lots of love to you all xxxx


    • This is so lovely Eva! I think of you often- glad to hear Max is doing well. I agree, recounting all that is happened is so hard, but I often find it lifts a weight of my shoulders. Xx


  2. My heart has just grown reading this. And I seem to have something on my throat and eyes. Beautiful. Thank you for sharing. Wine soon. Big love xxx


  3. I have tears in my eyes Kathi! Milos was just asking the other day, how Vega was doing so this is good timing 🙂 I’m so so happy to read this. Big hugs to you and your family and especially to Vega. Love all the way from NZ xxxx


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