Cancerous thoughts

Today was a Marsden day. Vega had her lumbar puncture under general anesthetic to receive her intrathecal Methotrexate. All went well. All her oral chemotherapy, supposed to be taken every night has been stopped for the week because her blood counts had crashed and she is neutropenic again. We will know if she can continue with the oral stuff after next Mondays blood test. She has Methotrexate related Mucositis again, a sore spot in her mouth, but it doesn’t seem to bother her other than at teeth brushing time. But this is probably an indication that her oral, weekly Methotrexate dose is too high.

Our next day at the Marsden is not until New Years Eve! It seems like such a long time and the nurses even wished us a good Christmas today. We have two visits at Kings and two weeks of steroids in between but never mind those (I shall moan plenty at the time).

The less frequent hospital days are definitely a perk of maintenance.

Vega remains happy and jolly and I did send her to nursery. I figured she will get what she gets but she is gaining so much from attending too. Her teacher says her confidence grows daily and I didn’t want to interrupt this again by taking her out for another week.

Yesterday morning at breakfast Lyra said this was all her fault. I asked her what was her fault and she went on to explain that it is her fault that Vega is ill because she was kind of to blame when Vega tripped down the stairs at a friends house, the subsequent foot pain landed us in Kings A&E and lead to Vega’s diagnosis. I welled up instantly. I explained to her that all this is no ones fault and no one is to blame. That Vega only tripped and experienced such pain because of the cancer in her bones. Lyra then moved on to talk about moshi monsters, so she went past the point pretty swiftly, but I had to think about it all day. My poor six year old. I wonder how long she has been harboring these thoughts, living with the guilt of having caused this. Seeing all of us suffer and not saying anything about it. Maybe even worrying it could happen again.

The effects of cancer are much more, much deeper, than the side effects from chemo or the treatment. The questions, the guilt; the whys and what ifs, the stress, the heartache, the ups and downs of the healing, getting better process; the recovery that is so hard; the never knowing what the next day holds, unpredictability in a time when all you really want is some plain old boring repetition; the constant slog when all you want is some flexibility. The elation when receiving a speck of good news, a positive thought that can carry you along- until the next negative one arrives. And always the worry that is eating you up, alive, spreading through your body like cancer itself.

Everyone involved feels it.

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3 thoughts on “Cancerous thoughts

  1. I am sitting here crying – oh the pain of hearing that and wishing that the real effects weren’t so life changing and deep with such grief. so call me unprofessional but I so wish i could have a space for Lyra to play, move n talk through her fears and worries. my heart aches for her. boring old repetition feels so far off. so glad you feel able to let Vega go to nursery, she seems to be thriving there and settling well.

    All that said i am delighted for you that another Marsden day isn’t for a while and hope the welcome break gives a bit of breathing space and some equilibrium finds its way to you.

    As for the poxy mucositis – it sits in my throat and all the way down just seeing you write it – and i repeat what a wee trooper Vega is.

    anyway words fail me and so am sending a virtual hand to hold, hug, and a day of boring old nothing for when you need it most. I suddenly remembered when i was able to clean the bathroom sink and how bloody fab that felt!!

    love and hugs xxxxxxxxxxxxxxxxxxxxxx

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