No weekends from cancer

So I thought I’d write something today again, and I have just spend the last half hour writing about me and my problem with accepting help and that I have to learn to let things go for a bit, bla bla bla. But when I read it all again, all I thought was that this all sucks. Cancer absolutely f*****g sucks. I hate what it is doing to Vega, to me, to us, our whole family. I hate that I have to even think about who is going to look after Alys the next time Vega needs to go to hospital for a transfusion. Who is going to pick Lyra up on Monday. How to explain to Vega that she can not go to the playgroup this week.

I am a positive person at heart, but this is a challenge- it is really hard. Sometimes it is so hard I feel like I can’t bear it. I sometimes sit having lunch with Alys and Lyra and Vega is sleeping so her chair remains empty. I nearly crack up over that. I well up with tears looking at the empty chair. I know all the stats and I don’t even want to talk about it because Vega is a person not a number and she will beat this. I know. But just having to face the word cancer and the label “life threatening illness” and having to let it be part of my life, our life, hurts.

But on we go, hurting or not, and some days are really not that bad. Really. Like today, and this is what I did start to write about earlier, our dear friends Beccy and Barney looked after Lyra and Vega, while Ray and I took a sleeping Alys to a greasy spoon and had lunch. Our first undisturbed meal together since, well since ages! It was lovely and very replenishing.

Back to Vega, blood results from yesterday were good. Good for someone on chemo that is, meaning that finally her red blood cells and platelets seem to have started to recover by themselves so no more transfusions this weekend. Her white cell count is still rock bottom, so she is still neutropenic. (http://en.wikipedia.org/wiki/Neutropenia) So no closed public places, playgroups, cinema, public transport or playdates with snotty friends, any food that you can’t peel and bio yoghurt (just to name a few things).

Vega’s blood counts 13/04/12

Vega’s counts first, average in brackets behind.

HB (red blood cells)- 12.6  (9.5-15)

WBC (white blood cells)- 0.86  (4.5-11)

Neutrophils (infection fighting part of the white blood cells)- 0.02   (>1)

Platelets 361  (150-450)

Neutrophils are the important ones here. Anything under 1 means she is neutropenic condemning her to isolation due to high risk of infection. Above  1 but below 3 puts her at increased risk of infection, but not neutropenic.

Since leukaemia is a cancer of the white blood cells the lowering of the WBC and neutrophils is expected, a desired effect of chemotherapy. Many of her drugs actually lower red blood cells and platelets too, a side effect, which unfortunately has kept us busy with transfusions this easterbreak. I am sure you will hear all about it next week as next round of chemo commences on Monday. I might even put up a link for her chemo protocol for anyone brave enough to look!

Thank you for all your messages! X

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5 thoughts on “No weekends from cancer

  1. Honey my heart bleeds for you and wish you didn’t have to be here – i so relate to your words – and so you know completely relate to all the blood counts and terminology – so at least one of me out here listening who knows (sadly) all the fucking terminology, at risk foods etc etc etc, so know it is good that platelets are up and some cells picking up and every few days without intervention a blessing. So glad to hear you and Ray got a bit of time together too. As for struggling to accept help – do you want the T-shirt lol – know that one, but still gonna say that it also lets people feel they can be part of this awful journey with you and hold you in it. So continuing to pray for every little gain that Vega makes and that you can find a place to ‘settle’ in all this turmoil and swear you fucking head off and sob to your heart’s content or laugh hysterically as the moment takes you. love to you all xxxxxxxxxxxxxxxxxxxxx

  2. I cried when I read your empty chair bit…. It makes me so sad. I know too much about cancer, my grandmother died of it as did my own father…. But nothing absolutely nothing compares to the pain of seeing your own child hurt, even when I was going through my own little health scare recently, all I could think of was Lauren and what this would mean to her if the worst was to happen. It made me feel sick with worry so I can feel your pain,I think ANY mother can feel your pain…… Always thinking of you and Ray and sending you so much love and positive thoughts x x x x

  3. Oh love, that empty chair image just made me cry so much!
    I hate that you guys are having to deal with all this stuff – and am often very angry on your behalf, so can only imagine how you must feel. Just know that we are here, to cry, swear and laugh with you along that way – we’re not going anywhere! I know how hard it is to ask for help, i find it really hard. But we’ll just keep asking and when you like to you can say yes, and when you don’t you can say no! Just know that you are doing such a wonderful job raising such gorgeous girls who are a pleasure to spend time with – and so it’s never a big ask to watch them for you. As always lots of love and hugs.x.x.x.x.x.x

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