Crappy summer

I am feeling a bit down so I shall warn you before you start reading and feel like I am dragging you down in my hot sweaty hole. Summer has finally arrived in London and I do not like it. Sorry. I know I should be happy about it being nice and sunny and spend my days picnicking with the girls in the park or letting them roam the amazing new playground down in Brockwell Park. Instead we have spent all of yesterday at the Marsden for the first day of delayed intensification. Lyra and Alys spent the entire day with Beccy once again, my babysitting angel.

Vega had a general anaesthetic for her lumbar puncture, intrathecal methotrexate, and was given her PEG injection in her leg while she was down. This was the penultimate dose of this time bomb and all was well- only one to go!!

After the intrathecal chemo she was supposed to start a new chemo drug called Doxorubicin, aka The Red Devil. It is called the red devil because it is a red liquid and it can cause devilish side effects. Doxorubicin is a cardio toxic drug meaning, if given in high doses (like it is in the regime that Vega is on) it can cause irreparable damage to the heart. Before it can be given it had to be established that Vega’s heart is working fine now so she had an ECHO (echo cardiogram) which is a bit like an ultrasound of the heart.
The echo took quite a while but Vega is incredibly patient and lay still for nearly an hour. What an achievement for a three year old.
And it turns out Vega’s heart is in tip top condition so she was cleared to receive the Doxo to ruin it all. Well hopefully not. She has three high doses of Doxo, yesterday was the first and she will have two more in weekly intervals. The red devil also coloured her pee a nice red colour, which I guess would make for an impressive party trick. Hot flushes like a woman during her menopause were on the card today and Vega had the loveliest apple red cheeks. Perfect for one of the hottest days in London so far this year.

Ah you see my cynicism? I am fed up, really.
I feel run down, just recovering from a bronchitis and still not feeling 100%. Summer holidays obviously means I have all three girls all the time and it is draining me already, just two days in!

This morning Vega started to take Dexamethasone again, her steroids. She had to take steroids during her induction chemotherapy right after diagnosis, for 36 days. Children on steroids eat A LOT, they can literally not control their appetite as the part of the brain that tells you when you are full does not work very well when you are on steroids, so they eat and eat and eat. During induction Vega would eat more than I did and then throw up, and start eating again. She gained a lot of weight too and was very “lazy” on her legs- she literally couldn’t walk because of the extra weight she put on around her top half and the loss of muscle mass and sensation in her legs due to the Vincristine. Children on steroids also become very moody, some become angry and aggressive some become very depressed. Many onco parents refer to it as the roid-rage.
Anyway, so since this morning Vega is back on the steroids, for 7 days, then a week break and another 7 days. Shorter pulses but higher dose. I really wouldn’t mind a bit of weight gain but I would happily go without the roid rage. I am struggling with Vega’s moods as they are, I am not looking forward to this week, I can tell you that.

She had her Vincristine today at Kings. It being the summer holidays and the weather so nice I thought we might get out a bit and potter about before we go to Kings but Vega was feeling really nauseous again and was whiny, she said she just wanted to go to bed. Obviously we had to get to kings so I dragged her out of bed and packed her plus Lyra and Alys in the boiling car and drove to toys’r’us. Now I have never been to toys’r’us before Vega was diagnosed. But now we have been a few times. It is a perfect place for an outing really, because it is huge, so it takes a while to walk through it. I can bang all the non/not so well walking children in a big shopping trolley. It is fairly empty most of the time and because of its size it is acceptable to take Vega even if she is neutropenic, because contact time with other children is minimal, compared to a tiny toy shop. I also have this desire to spoil them often, not with expensive things, but little knick knacks that make the girls happy. I guess it is more retail therapy for me but I do feel sorry for all of them, especially now in the summer holidays when we should be having a good time, but instead we are at home.
Vega really is not well enough to be out and about. Toys’r’us and Kings was very stressful- both for her and me, and even Lyra and Alys. She is sick in the car whenever we drive, she was really sweaty and flushed and is irritable and demands all sort of things at more or less inconvenient times. Sometimes she just goes very quiet and this really worries me because usually she is either about to throw up or something worse is up. I can not take her in the sun, her eyes and skin are very sensitive, she even wears sunglasses around the house sometimes.

I feel as if I am becoming a hermit, and I have to admit that I do not want to leave the house anyway. These mood swings and sudden vomiting attacks make going out an extremely volatile undertaking. I am just constantly stressed when I am out. And it is not only Vega, I have Alys with me too who clearly has decided to take Vega as her role model for any tantrum related behaviour and Lyra who surely has a bottomless “snack hole” somewhere between her throat and her stomach.

So there you go, all this is shit shit shit. I said it. I am fed up with this shit. I want to lock myself in the flat and let the children watch tv all day, yes even the one year old. I am such a crap mother.
To make up for this I might just have to go to toys’r’us again tomorrow…

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Goofing about, like she has no care in the world. Having a happy moment, at the Marsden, Doxorubicin in the back.

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3 thoughts on “Crappy summer

  1. ah fuck – what else can i say – shitty days are what they are – just shitty – so am sending my inner navaho warrior (newly discovered in a body mapping session) over to watch over you until some warmth shines on the inside. better days will come and i am sorry but i have to disagree strongly – you are not a crap mother, but a mother who is loving to the full extent of remaining and exhausted resources. I so wish i could do something for you – housework anything, but my crap feet don’t allow. so instead you will remain firmly rooted in my heart and will send as much love over the airwaves that i can to get you through this next friggin stage.

    love to you all – and hope the red pee at least provides momentary interest. hugs and hugs and hugs and a giant pillow to beat against a wall. xxxxxx

  2. I think if you were a crap Mum you wouldn’t even have written this post Kathi! I can’t say anything to make it better, but please don’t think you are a bad Mum xx

  3. Ah love – all this is indeed shit – but I can not agree with the crap mum bit – you are a wonderfully loving mother, so reflective and you are coping with all of this so well that all around you are in awe of you. Your children, despite living through a really really tragic family time are still happy, loved and secure…that is only down to you and Ray honey and the way you are helping them all through it! We’re all here to help you through the rough bits – allow yourself to feel crap – and allow yourself to lean on us. You are not being a burden by doing this, but letting us be a friend to you – isn’t that what makes the world go round after all – helping each other out?

    Big hugs.x.x.x.x.x.x.x.x.x.x

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