sorry, what did you just say?

i haven’t blogged for a few days. i have been feeling slightly weird. i tried to think of the right word to describe my mood before starting to write today but it is not coming to me. maybe my english is just insufficient. it is as if i am finding it really hard to be with people. i am finding it hard to focus- on people telling me something, and i feel as if i am appearing to be rude, as i probably look as if i am distracted or not interested. my mind wanders a lot too, so this ‘indirectness’ is all encompassing. hence i wasn’t able to blog either and i fear today’s blog will be as jumbled as my mind.

we are coming to the end of this weeks block of cytarabine, the blood killer. it is a course of four doses, given on consecutive days for two weeks. so we were at the marsden last week monday, got the first push there and then took three doses home, to be administered by the district nurses. the same repeated this week. monday marsden, got our stash and off we went home with a bag full of poison. well not exactly full- the amount Vega is given daily as a push into her port is tiny. i took a picture.

Cytarabine, Ara C. given at home over three consecutive days

Cytarabine, Ara C. given at home over three consecutive days

it is incredible that these tiny amounts have such a devastating effect. with most of the drugs that Vega is taking, the effect is slightly time delayed. so last week’s and this week’s course of cytarabine will rear its blood killing head by beginning of next week, i am bracing myself for transfusions next week. but we shall see.

i am starting to feel like a proper ‘onco mum’. it will have been three months next monday since Vega was diagnosed. i feel like it has been forever. i found a picture today, that Ray must have taken, which i haven’t seen before. it is of Vega on her first day in hospital, just hours after we were told she had leukemia.

she is already receiving her first red blood cell transfusion. i clearly remember my terror and my worries, so many worries and so much upset about all that i at that time just imagined would come, all the suffering and pain.

and now three months on we are in it. living it day to day and (do i dare say it?) getting used to it. used to the suffering and pain. unbelievable. and getting on with it.

i can always tell if there is a newly diagnosed family at the marsden. the parents have this look about them, like an animal being caught in the headlight of a car. whenever i spot them i realize how far we have come. only three months in, which is not long considering the length of the treatment protocol, but still we are in such a different place than three months ago.

Vega has continued her crabby walking and even started to walk by herself a bit last saturday- like a stilt walker always in motion shifting her weight from foot to foot to balance herself. she was so pleased! on sunday she was invited to a birthday party and we went- ignoring all recommendation about isolation and distance from groups of people while neutropenic- she needed it! it was worth the risk!

she spent most of the party dancing, playing musical statues, until her little legs were shaking so much she couldn’t stand any longer. it was the first time for some of the other parents there to see her move around and i could tell from their faces how sad they were to see Vega like this. her wobbly, limpy walk just shows such deterioration, beyond the hair loss and the weight gain/loss, something they haven’t seen before because she is mainly in the buggy whenever we are out and about. it made me really sad too. seeing the sadness on other peoples faces made me realize how much i am holding it together, for Vega and for myself. that i too feel absolutely devastated to see my three year old, hairless and barely limping, when only a few months ago she was running around the same hall, the same gardens, hair fluttering in the wind in a fairy costume. but one can not dwell on things like this. and i have to remind myself that just last week she wasn’t walking at all and that limping is indeed marvelous considering the circumstances.

Vega is now back to the crabby walking along the wall and the furniture, i guess the dancing has taken it out of her!

when i brushed her teeth on monday night i saw that she had a sore inside her mouth, just near her molars. it looked so sore! i started to cry, because she hadn’t even complained about it and i didn’t notice until then but it must have been there for a day or more at least. she is so tough. i don’t know how she does it. it is those little things that are now making her life miserable at times. the last three months of chemo have began to wear her body down. her gums are bleeding, she has had pretty much constant diarrhea since beginning chemotherapy so her bum is sore. she has a cough that is not clearing. i understand now why children beginning chemotherapy look relatively well and children who have a year or more of chemo behind them look wasted. although they are cured of cancer, they are being washed out with poison daily and it is just eating up their bodies resources. which is what the cancer would have done if it would not have been diagnosed. reading some of the side effects of the chemotherapy drugs makes you realize that the cure is just as dangerous as the disease. children who die during treatment never die of cancer. they die of the side effects caused by the chemotherapy drugs, mainly infections. it is damn scary.

i guess you see why my mind wanders. although i have passed the stage of the scared animal in the headlights i am now in the next, yet undefined, stage. maybe its the i can’t concentrate on anything or i am a social cripple stage. or maybe i just need a good night sleep- or even better- a holiday from cancer.

i shall not forget to mention that people still keep donating- you all know who you are! thank you so much, Vega and i have hatched a plan for little thank you tokens which will be on their way to all of you very soon. please bear with us.

i am also ever so grateful for all your comments- you are a very uplifting lot and i love you all for it. please don’t be annoyed if my social-weird-indirectness extends to my ability to reply to comments. i am reading them all and feel very much uplifted after doing so. i have to say that i am amazed that my blog has had more than 1100 views- and this surely can not just be my dad checking 50 times a day?!

until next time…

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4 thoughts on “sorry, what did you just say?

  1. Aah Kathi – over 1100 views – not surprising as your story telling absorbs me as i listen deeply to your words, feel deeply into your experience and sit here at the top of my ‘2 years later’ mountain in a similarly weird place – empathising with the wordless state (been working on my body map and just letting the paint flow and today moved on top of it with a friend witnessing).

    My heart sang at the description of Vega at the party and ached to in the knowing of the loss – the constant paradox of gains and losses. My legs literally feel her walk and deterioration and know it so well and in my mind i do what I can to soothe them from their daily struggles. I thought of you today as i was loaded onto the back of an ambulance to go for my petscan – a familiar ritual and was just sensing how hospital life, traumas, rituals, meds, waiting rooms etc etc start to take on a familiarity that as you say ‘you get on with and used to’ – i remember a time when what used to be ‘normal life’ whatever the hell that was, seemed to be distanced and the feeling in myself of yielding and allowing the necessity of a long term journey set in – like i had left base camp and set off up the mountain again – the path revealing new rituals but the destination and course unknown. You hold so so so so much for your little one – beyond what you will ever imagine possible to hold – and you live that pain and share it with us here with such incredible honesty, humanity and compassion. The drifty, swirling wordless weirdness will find form in its time – shift into a landscape that is walkable and that will hold strange and miraculous, wondorous moments in what seems from the outside just a shit deal. I showed Annette (my bodymapping friend) the pictures of Vega and her beads today and we both sat and cried – they are simply precious.

    Know that you are all in my thoughts daily, that there is a little Vega ‘refuge’ in my heart where she sits with me and that so many people are loving you through this relentlessly difficult time. big hugs xxxxxxxx

  2. Just to let you know, we think about you all every single day. Not a day goes by when I don’t feel your worries and concerns. We’re here for you. All our love xxx.

  3. Hi kathi keep on keeping on hun I can’t really find words to say u an your partner are a tower of strength for each other for vega I don’t know where your getting it from but blessings to u both xxxxxxx

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