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| Chapter 9 - Memories of Max |
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“Whoa!” he exclaimed in that funny way of his which signalled extreme surprise. |
“Really real?.” This was what Max used to say when I used to tell him something outrageous which he suspected to be complete garbage and was usually part of the teasing and banter between both of us. |
“Yes, really real. If you don't take the potassium you could have a heart attack. I hate having these fights with you. I only do it because I love you so much and I want to stop you having all this pain and hurt. I don’t like the arguments and I know you don’t like the pills. I know they taste horrible and are difficult to swallow but I don’t want you to keep being ill.” |
“OK Dad, I'm sorry. I’ll try to be good and take them from now on.” |
This was not the end of the fights, but it was the beginning of the trust and bond which helped both of us through the treatment. I actually tried many of the medicines (having first checked with the nurses that it was safe). Liquid potassium is foul and the tablets are difficult to swallow. Lactulose, a laxative, is disgustingly sweet. |
In the early days of the medicine battles we used to grind pills up into food to try to disguise the taste but some of them just hung on in there, the taste breaking through whatever was used as a mask. |
In the end, disguising medicines is not a good idea. It’s sneaky. If your child knows you are trying to deceive them they lose faith in you. In the Unit you are their one hope, their one lifeline. Literally. If you deceive them they have no-one and nothing they can trust. Above all, what a child needs is love, trust, care and faith. You must give them all of these and more. It’s not easy. |
The chemotherapy works on the basis that it kills rapidly reproducing cells. This works well on the cancer, but has the unfortunate side effect of also killing other normal rapidly reproducing cells in the body. A major set of cells affected are those lining the mouth and intestinal tract. This has the effect that bacteria that occur naturally in the body and help normal bodily functions are then able to attack their host. This is called opportunistic infection. To counter the effects of thrush and other fungal infections, the children have to take special solutions to disinfect their mouths and intestines. The mouth and teeth need to be rubbed with soft sponge swabs and then swilled with a disinfecting solution which were known as the ‘swills’. The swabs are gentler than a toothbrush which often cause too much damage to the tender lining of the mouth. |
Max tried very hard. He used to hate using the sponges. I too tried using them, and I could understand why. They are not pleasant, and I often gagged when using them. |
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