Brrrr

Ice buckets everywhere. I am never one to join these fundraising crazes and did not do a no make up selfie, or wrote a cryptic message about the contents of my handbag. And I will not pour a bucket of water over my head either.

I have felt positively chilled this week, without any buckets or ice, when I saw Vega looking paler and paler. The mind is a powerful weapon and I sufficiently used it against myself, thinking about low blood counts and the R word. Vega ate much less, we had nosebleeds and bruises and skin infections and sleeping twice a day. I got really stressed. The kind of stress I had on treatment, when it is hard to think. On Wednesday night Vega said she had an earache. A few hours later, pop, the drum went and it was pretty clear she had an ear infection. We went to Kings on Thursday morning and believe it or not, they assessed her, prescribed antibiotics, took bloods and LET US GO. I only really started to breathe again when Kat, our onco nurse rang me in the evening to tell me all bloods were good.

The antibiotics are working and Vega is much better today.

It is so easy to worry, and so difficult to be positive. Vega has been off treatment for almost three months and besides a few glitches she is doing so very well. We are halfway through the “dangerous” six months after treatment. All the facts are encouraging, yet one spell of “grey face” and I almost lose my marbles. I wonder if I will ever recover my underlying positivity, or if I am destined to worry forever.

I ought not criticize the ice bucket challenge, because it seems to raise funds. But families that are affected by any illness, may it be cancer, or motor neuron disease, or Alzheimer’s… That moment of shock, when the cold water hits you… We feel like that a lot.

Ray is beginning his charity ride on Monday. There might be ice involved in the bath to soothe sore legs. He is so thankful for all your donations, you have been great supporters! If you want to give him a little boost here is the number to text to donate- VEGA99 £1 to 70070. (Or £2, £3, £4….)

 

 

 

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One thought on “Brrrr

  1. So well put as ever – and yep please don’t nominate me for ice!! had one myself when the dreaded virus went on for a month and so resonate with your words of shock – 3 years in remission (nearly) and i still feel it!

    I am glad to hear Vega’s bloods are good and think you would be worrying at any stage with any symptom. i think it takes ages for a new norm to settle in and for symptoms to become part of an ‘everyday childhood/adulthood’ ordinary concern. for so long they have been signposts to admissions and meds etc that i really think it takes a long time before the worry lessens – well in my experience anyway. I hope with each day and week to the 6 month marker post treatment you can find joy in her little steps of joy and recovery. you are ALL always in my thoughts – and rays legs!! what an endeavour!!! Looking forward to reading about his progress.

    Love you Kathi!!
    hugs xx

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