Owning oneself

I am blogging in daylight today, and just like there is light outside I also detect a light at the end of this ordeal tunnel. We are still in hospital, having been admitted due to severe mucositis caused by methotrexate toxicity (ie poisoning). Vega had a fever, this was likely to have been caused by the mucositis, and was neutropenic again, so first line antibiotics was started on our arrival on Wednesday night. Our regular ward Toni and Guy had no free beds so we spent our first night in HDU, high dependency unit/ intensive care. And although she was not high dependency, we were treated as such just because we were there. Flexibility is not a hospitals’ strength. The nurse remained in our room the whole night and Vega was monitored constantly so it was a sleepless night for all involved.
We transferred back to Toni and Guy late on Thursday night and I was never so happy to actually be back here.

Vega really had a hellish time these last couple of days. Her mouth, throat, stomach and intestines were ravaged by grade 4 mucositis, meaning that she was unable to take anything by mouth without having severe pain. She was on a fluid drip to prevent dehydration but as the days went on it became more and more concerning that she wouldn’t eat anything, not even the liquid nutritional supplements that they were offering her. She also outright refused any of the mouthwashes, sprays and antifungal medication they prescribed her, as well as any pain medication that needed to be taken by mouth. She just wouldn’t open her mouth at all, except to vomit up phlegm and blood. She wouldn’t talk either or let anyone look into her mouth. It really was as bad as it sounds.

On Friday we made the difficult decision to fit her with a naso gastric (NG) feeding tube. This is a small pipe that is pushed in through the nose, down the throat and into the stomach so food can be fed directly without having to pass through the mouth and throat. Insertion is quick but sure does not feel nice, especially with bad mucositis all the way down. We had to give Vega morphine to help with the insertion and even with the morph it was quite distressing to watch. I had to hold her down so tight and she was retching and gagging and she tried so hard to pull the tube out again. That evening she was not happy with me at all, understandably, and I think she felt it was a real breach of trust that I have let them do this to her.
With the tube in they started her on continuos overnight feeds straight away, but it is not as easy as hooking her up and getting it in. She tolerated the overnight feed well enough but when they tried to give her bigger, quicker boluses the following day she started gagging again and sure enough threw everything up almost instantly. And not only does that mean that she will obviously not get the food in, but there is also the chance she throws up the tube through her mouth meaning we would have to insert it again.
Today, two days after insertion we have slowed down the rate and amount of the feed so she will tolerate as many calories as possible.

Yesterday Lyra came to visit and instantly Vega looked brighter and started talking even! She remained happy enough all evening and started to demand all sorts of food, noodles, spaghetti with meatballs… But when she tried eating any of it she couldn’t, her mouth was still so sore. She cried with frustration of wanting it but not being able to have it.

Late last night she started to talk a bit more and suddenly out of the blue said that she still looked like Vega with the tube. It was as much a statement as it was a question. I realised then, that all of these things happening to her, the hair, the tube, the chemo, all these things happening without her consent, made it hard for her to feel like Vega. Like the Vega who could wear hairbands and eat noodles whenever she wanted. I felt so sad. And amazed by how wise a little person can be. To be able to express her feelings in such simple yet poignant words. The loss of control over her body and what is happening to it and through it, what is happening to her being Vega.

Today she still seems to be improving. She asked for cornflakes for breakfast and even had two small spoonful. Even without any of the mouthwashes and sprays her mouth is slowly feeling better. She has not spiked a fever in 36 hours and we are now hoping her neutrophil count will begin to rise soon. Last night they wanted to give her a red blood cell transfusion because her counts had dropped under the magic number 7. I decided to refuse, based on the fact that she was looking better, afebrile and trying to eat. I took all this as a sign that her body was finally starting to recover and I was hoping that by this morning her blood counts would have improved. I am trying to fight Vega’s corner, trying to be part of her treatment and I think my negotiating and bargaining has by now awarded me a “difficult parent” label. Which I am mighty proud of!! And sure enough this morning her red blood cell count had gone from 6.4 to 6.9 and the blood transfusion was put on hold. Eat your shorts haematologists!
I am hoping now that this is a trend rather than just lucky. Her platelets were also low and unlike her red blood have continued to drop. With the mucositis still present there is an increased risk of bleeding from one of the ulcers along her GI tract so we might have to have a platelet transfusion later.

I am hopeful. I know she is on her way to recovery. But what a bugger this has been. I dare say it was our worst week during this treatment yet (although I might have forgotten how bad the first few days after diagnosis have been..). We will remain in hospital until her mouth is much better and we might have to go home with the feeding tube still in place. The last dose of methotrexate is due tomorrow but I doubt it will be given. I think we can safely say that we have reached toxicity.
Oh yes we have.

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Trying to eat, and being fed through the tube.

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5 thoughts on “Owning oneself

  1. aaaaaaaaaaaaaaaaaaaaaaaaagggggggggggggghhhhhhhhhhhhhh – mucisitus is a bastard!!!!!! it really is like swallowing razor blades and I am glad she refused the mouthwashes – personally they made me worse and i thought unnecessary. Oh kathi – wear that label with pride you fabulously difficult parent!!!

    you know i presented my body map/my story this week in Barcelona and thought about Vega so many times – you carry her story and write it with her and she gives such poignant statements. i found myself talking about that same thing this week – about how it is so hard to feel ‘me’ – to look in the mirror and see and feel and sense ‘me’. i am so touched by her ability to find ‘Vega’ through the relentless changes.she touches so many many hearts as do you with the raw telling of your story.

    i learnt an expression this week in spanish that you use with friends or loved ones when you are a ‘soulmate’ so to speak. they say ‘ser mi media naranja’ – you are the other half of my orange!! through all these horrendous decisions you have to make – you are always the other half of her orange!!

    love and more love to you both there at kings,

    hugs Sue x

    • Thanks Sue, as always for your support. I do wonder about this thing of refusing certain medication or procedures so absolutely outright. I sometimes think she quite intuitively knows what is good for her and what is not. Hence I feel even shittier if I do something by force.. She is very cooperative with most things but sometimes she just decides she doesn’t want something and then there really isn’t any way to make her- other than sedating or lying on top of her!

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