When all this started, I thought 'OK, we'll handle this and make as few changes as possible' (well, I didn't, but what I really thought would not be helpful or enlightening at this point!). The fact remains, that I anticipated little change to my home or my life, except those caused by my own weakness. I had no idea that being ill involved so much STUFF!! My house, or at least my bedroom, is now looking like a sick room, and I approve of this not at all.
The changes started when I first came back from hospital. I have told you of the drains and all the necessary things that went with them: there were the syringes, the papier mache bowls, the wipes, the note book etc. etc. However, this was only due to last five days. After that, I could put everything away into my bulging bathroom cabinet and forget about it. Which I did, until I went up for my 'Introduction to Chemotherapy' session, about which I have already written. There were suggestions: better make sure you have a good mouth wash, preferably without alcohol [add to list], you may need Bonjela or something similar for your mouth [add to list], you will need a digital thermometer [add to list], you should have paracetomol rather than aspirin [add to list, with humph of disgust - I have never found it works as well], you may need micropore [add to list], a good bath oil (real oil) [add to list], moisturising creams without any perfumes [add to list]. You get the picture. Over the next week, Ocado delivered a bizarre set of 'groceries', which bore little resemblance to my usual order of wine, fresh fruit and vegetables, yoghurt and sundry other goodies.
When I attended for my first chemotherapy session, therefore, I felt prepared. I had done everything suggested and there could not possibly be anything else. Little did I know. I was hooked up to the poison and the whole thing started. The nurse who had got it all going sat with me, as she must during the first drug, and said: "Right, now let me explain what you need to take home with you." I'm fairly sure I blinked, although this may not have been obvious since my head was being frozen to -28C at that point. She proceeded to hand me bags full of stuff:
"You start the Odensatron and Dexamethasone this evening" she explained, "and take it till it runs out in three days. On day five, you start the antibiotics, I've written 'Monday' on the box so you won't forget. Take those until they run out. The metaclopromide is anti-sickness. You can take it along with everything else if you need it. There are two boxes, but let us know if you need more." I left the unit weighed down with all the STUFF.
The second cycle arrived. I went up to the hospital to see the consultant for my pre-treatment assessment. I had not used the metaclopromide at all, I explained, so I didn't need any more. She asked about my mouth. I said it had been a little sore. She assured me they could do something about that. Also, I would need to start taking dexamethasone earlier before cycle three, so she would prescribe that. I could pick these up at the pharmacy when I returned for my therapy in two days time.
This time, I returned from the hospital with a huge, and heavy, bag of specialist mouthwash, which I am supposed to be mixing and using four times a day (I'm not - I may regret this!), all the same drugs as before plus some extra. I was also told that I needed to start injections into my abdominal wall to stimulate my bone marrow. So, as I was leaving, I was handed another packet: "Put this in your fridge. We'll arrange for the District Nurses to come and do the injections."
They duly arrived on Monday. They are kind, competent and chatty. They left my 'Patient Held Record', which Molly tried to eat (and, no, I didn't actually ENCOURAGE her!). But I so wish I did not have to have a bright yellow Sharp's Box in my bedroom. Somehow, that is the last straw. I think I may design a Sharp's Box Cover, rather like those silly loo roll covers, for use at home. What do you think? Bright floral gingham anyone? Or perhaps a Jolly Roger?
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