Like a hole in the head

Our day started at the Marsden for a lumbar puncture and we are ending it at Kings, as inmates once again. Vega has a fever and so we follow the protocol and she is hooked up on her first line antibiotics as I type. We are in the playroom, well past both of our bedtimes and are waiting for a room to become available.

Vega was fine this morning, we had an early start, as always for lumbar punctures. She had a bit of a cough but was cleared for chemo by the doctors at the Marsden. It was busy there today, 6 littler children before us, so it was a long wait. Vega and I played in the playroom all morning. Vega is absorbed in her play but I can never help overhearing conversations, between parents, between nurses or doctors and parents. There was a tiny little girl today, just 20 months and she had cannulas at every possible site. Hands, elbows, feet. Hooked up on IV fluids and all the regular parents know what that means. A newbie. Her mum seems together and is trying not to show her worry, I guess mainly for the little girl. They arrived yesterday and are yet to find out if their little girl has Leukaemia. I feel real sadness looking at the little girl and the mum, still so early on in their journey. I feel so sad knowing what awaits them, what a hard time they will have.

There were many brain tumours today. You can always tell by the huge scars on the children’s heads, the bumps for the shunts and often by the twitchy, jerky way the children move. Somehow it was too much for me today. These children make such miserable pictures, just shadows of what I imagine their former jumping, running, playing selves used to be.

Vega woke from her general anaesthetic and was really confused for a long time. She was crying and I couldn’t understand what she was saying, some googlyhoop. She didn’t want to eat much, but perked up after a while and we went home.

We have long made it a tradition to go to the car wash after our Marsden day. One of those groovy places where the car is pulled through a tunnel of huge mops and bristles, all foamy. It is like our treat, Vega and I both love it. We “oh” and “ah” and pretend to have our hair washed. Today I wished the car wash would wash away all the sadness. All the suffering I witnessed that day, all the scars and all the cancers.

But as our car emerged from the foamy cave, all the sadness was still there. No brush big enough could wash away what I had seen that morning, or what Vega had to go through once again. I felt drained and Vega too, looked so very tired.

We picked Lyra up from school, Alys from Beccy and at home Vega started to complain about a real bad pain in the back of her head. She had a low temperature too. After spending the morning in hospital I didn’t want to go back in and I kept checking Vega’s temp over and over for an hour or so but then our Onco nurse from Kings called to give me this weeks chemo adjustments and I had no option but to say that Vega had a fever.

We were ordered to come in and I texted Beccy to see if she could have Alys. Beccy wasn’t free tomorrow so she suggested another one of our friends. I was so tired and upset too, about having to go into hospital again, the last place I wanted to be tonight. I sent Beccy a text back saying I don’t know what to do, with two sad faces. Two! Yes it was that bad. When I feel sad and I feel this tiredness so bone deep, it is almost as if  I can’t think. Beccy just texted back that she will sort it out and I shouldn’t worry. I realised then that is what I absolutely needed. To pass some responsibility over. To rely on someone else to sort this out. Ray came home and finished off the sorting out with Beccy. We are so very lucky to have such friends as we have. They are awesome.

When we left home Vega had such a severe headache she was holding the back of her head with her hands and she could barely stand. Poor mite. Most likely a lumbar puncture gone bad. With a bit of autumnal cold to round it off. Well I hope at least. All the other causes of severe headaches and fever are not so nice to think about. I will probably dream of brains, and scars and car washes tonight. Over and out.

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3 thoughts on “Like a hole in the head

  1. Oh hunny – feeling this deep within me today – so sorry to hear you are back in again and so with you on the image of others at the beginning of their journey – wishing we didn’t know about the chapters that will follow. I want a big car wash too right now too that washes away the residue. Today the students arrived at goldsmiths – all fresh n excited n i sat there like a refugee – took me half n hour to walk/hobble between the two rooms for morning sessions and then noticed the stares as i moved in splints, felt the extra bit of distance from those not knowing how to move alongside me and grateful for the few staff who know what i have been through. smiling at the thought of what the hell i am telling you all this for, but i left exhausted and came home to sleep and wished my kitties could cook, run a bath n then stroke my head!

    Beccy is so wonderful and it so reminds me of those amazing people who can take some of the strain for us………. lifelines in the sea of cancer crap n worry.

    a full heart n hug to you there at Kings – hoping the antibiotics do their work quickly and as ever sending you love.

    thinking of you always

    sue xxxxxxxxxxxxxxxxxx

  2. Oh Kathi! Sometimes, I don’t know what to say to ease your mind. It must be incredibly difficult to stay strong and sometimes, I think it does you good to give in to the sadness for a little while and let it out. I hope Vega is well very soon. I hope it’s nothing more than a ‘minor’ cold. Remember we are always here if you need us.

  3. rubbish once more that we are so far away and not able to help ;0(
    how has today started? hope Vega is now better and you are allowed to go home
    xxxx

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