4 days to go.

Today- Vega has complained of many pains today, mainly headaches but also back pain, tummy pain, leg aches and hip pain. Her face is super flushed, which it usually is at this time of the cycle because of the Vincristine. Her temperature is sort of borderline normal, mid 37s. She woke me up last night, 5 times, to help her on the toilet. We always have this during this part of the cycle, a combination of Vincristine bowel irritation and just more food being eaten and digested because of the steroid feeding frenzy. Maybe it is the interrupted night of sleep but today I feel very nervous. When we were at the Marsden on Monday, our consultant talked us through all the things to look out for post treatment:


Bone pains

Tummy aches

Vomiting, especially in the mornings

Fevers and reoccurring infections

No need for me to explain my nervousness then. Vega has had most of these symptoms throughout treatment, but the major headaches are relatively new. These headaches, like the one today are pretty debilitating. Vega just lies on the sofa with her eyes closed. She says any movement hurts. Beside the fact that it it is hard for me to see her in such pain, I also keep worrying that this is something more serious. Like a CNS relapse. (CNS- central nervous system- sometimes Leukaemia cells manage to enter the cerebral fluid). Yet there is nothing I can do. Well except the head stroking, hand holding and sofa cuddles.

Her CNS fluid will be checked for cancer cells on Wednesday when she will have her last lumbar puncture, intrathecal chemo and bone marrow aspirate. After that I will not have the reassurance of 12 weekly check ups. I will have to learn again what is normal and what is not for her after all this treatment. I am finding that very daunting.


One thought on “4 days to go.

  1. Oh poor thing – and never underestimate the power of a Mother’s loving touch. Kathi I know this is such a daunting time and i know for myself I felt so lost at the end of treatment – glad i had got to the end but for ages preoccupied with the ‘what now…’ it felt like a weird limbo for so long, but a new normality for you all will arrive – just give it lots of time. I was also hit by a huge emotional wave – kept thinking i should have been joyous all the time and realising the release of all i had held just getting through needed a place. I know every situation is different, just dont want you to be overly shocked if you too have a huge release at the end of it all (went on for some months for me).

    till then – well its the 3-2-1- 0!!!!!!!!!!!!

    may each day bring soothing hands for vegas poor wee head. Much love to you all xxxxxx

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