It is indeed 2013. I have been thinking about some meaningful New Years blog post, but I couldn’t bring myself to write. To be honest the fact that it is a new year has left me feeling rather depressed. I feel no excitement about this year, have no hopes that things will change. This might have been brought on by spending New Year’s Eve at the Marsden, and having not been there for quite a few weeks, it was nothing but a stark reminder what still lies ahead.
The meeting with our consultant was nothing special, Vega is progressing with the treatment as expected. Her feet have been bad since the middle of December and on the best days she is limping precariously while on the worst days she crawls and asks to be carried. Our consultant at the Marsden has not much to say about this, but I have asked about more, and most importantly, regular Physio input. Orthopaedics might also have to be involved, but for now Vega’s dose of Vincristine, the most likely culprit for the foot problems, will not be reduced. If her walking and mobility issues will not improve in the future a reduction in dose might be discussed. As always, the risks have to be weight out against the benefits, and that is not an easy decision to be made. Chemotherapy is very rarely reduced.

And so our year 2012 ended at the Marsden and began with steroids and today saw us arriving at Kings- Vega has a temperature. We waited for hours to be allocated a room, and for once Vega actually was rather poorly. Her fever just went up and up, so high at one point that my thermometer could not read it anymore, totally off the chart. Paracetamol worked slowly and once we managed to get the temperature down, Vega was chatty and perky. Tonight she spiked a fever again, and just in line with my rather pessimistic mood I have a feeling we will not make an escape in two or three days this time.

What else can I say. 2013. Vega’s treatment will go on. More chemo, more bloods, more hospital stays. Nothing much will change.
I have made some very vague New Year’s resolutions. To keep up the spirits. All positive:
Be kinder, especially to the children.
Be calmer and find a way to deal with the stress.
Breathe deeper, laugh more.
Accept help from others and help whenever I can too.
Nurture my relationship with Ray.
And above all, most importantly-
Believe that things will get better. (But this is so hard, so very very hard)

2 thoughts on “2013

  1. hello there my love – are you reading my mind again?? i sat up on new years eve, bruised from hospital treatment and watching the fireworks on TV with half a glass of wine feeling sort of numb, despite the pretty lit up sky. gosh i resonate with the difficulty of looking forward, ache for Vega’s legs and just wish i had something useful to say. I sat new years eve thinking i am 3 years in now – well just over and am tired of my life revolving around blood tests etc – i am impressed you managed to make any resolutions – way to go you!! that said i did manage to book another 3 days in silence for the end of the month – the only thing that keeps me sane right now – a space to just be since future and past seem fairly irrelevant at times – just a vast, aimless desert to keep plodding through (are you cheered up yet lol!)

    Anyway i amused myself the other day with thinking of all those wonderful sayings people toss around like put your best foot forward and one step at a time etc giggling at the fact i don’t have a best foot and generally – out of splints, they go a wonky sideways! So maybe the wobbly, limpy, crawly path that we are on currently will leave a different imprint in our lives and lead to new landscapes in time. i had a visit from an ex student of mine last week and her 16 month old who was so fascinated with my crutches and took them and held them and walked around the house with them – made me smile (photos on my FB wall).

    not sure if you are still in Kings or not, but fingers crossed you are back home soon. does vega like swimming? is there a warm pool around/ i wondered if using her legs but without the weight of supporting her body may be something she enjoys (good for connections and just plain fun and relief)

    btw the link to your blog doesn’t seem to appear on your Fb wall anymore – not sure if you were aware or not?

    sending you love as ever for strength to meet each moment.

    hugs Sue xxxxxxxxxxxxxxxxxxxxx


  2. Pingback: 2014 | allvega

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