10.45pm plus 2 Imodium. Good God I was up five times during the night, it is now 5.45am and I’m frozen, fluey and full of aches and pains. 2 paracetamol, electric blanket on to see if I can warm up. 7am now wandering around the back garden after hanging washing out, way too warm. This drug really isn’t nice, all I want is a night’s sleep.
Midnight plus 2 Imodium but at last have had a good night’ssleep, however am ravaged with a thirst, just cannot get enough fluids into me.
Midnight and 2 Imodium but hey another good night’s sleep. I really do need my sleep or I’m like a bear for the day. The thirst is still a problem and food a total nightmare, wonder will I ever actually enjoy food again. Just have no taste for anything and have a horrible smell all the time.
Back into see my oncologist. First problem is my bloods haven’t been faxed through despite this being confirmed. Thank god for such an efficient secretary, she had it all sorted. So firstly the lovely Sinead arrives. Usual questions, how am I, what side effects am I feeling etc. She is surprised at my thirst, my sugar levels are ok, but says she will monitor it and maybe do a repeat sugar test. All my bloods are fine so everything looking good. The lecture comes again, yes I am doing too much and they literally want me to go to bed every afternoon for a sleep. Honestly cannot see that happening, however, I will try and lie down with a book and if I am tired I will then nod off. Not too sure when that’s going to happen though but at least the thought is there!
It appears that I have reacted very violently to the drug but seem to be stabilising now, you mean it doesn’t get any better? No apparently not and once I increase to 5 injections a week I’m to expect to feel awful all over again while my body reacts. I was misinformed by the interferon nurse; apparently it is imperative that I take the injection at the same time every day. So taking it say on Friday nightand again on Sunday night is giving my body too little time to recover over the weekend. I’m to decide whether to take it morning or evening and stick to that. She says Monday – Friday, I say Sunday night to Thursday night, and my thinking being that this way although I will be tired on Saturday I should actually feel completely normal on Sundays before I start into the next week. So back to the problem of lack of rest – she is genuinely worried that if I don’t start behaving myself I will end up in hospital when I go 5 days a week. Oops I will try my best I promise.
He arrives in himself then, still not too sure about him and yet this is the guy that is supposed to be keeping me cancer free in the future. I just don’t feel we have any rapport. All my other consultants are very personable and chatty but this guy is full of business only. Sometime lately I have been regretting not having had a second opinion. Think once I was in the system too much happened too quickly which never really gave me time to think. I know it is too late now as treatment has started but still the thought lingers. An example of our relationship, which you may or may not understand, is that he agreed I had reacted violently and badly and that also my body may just not be able to cope with the drug, however, they would press onwards and see what happens. So he told me to phone Sinead how I am next week with a view to increasing to 5 on 22nd August. I commented oh that’s the day the cao offers come out; he immediately said do you want to postpone it so! Actually didn’t really say it more or less snapped it, I said no just that the date was imprinted in my mind. Now any other consultant I know or indeed I feel most people I would have this conversation with would have immediately asked did I have someone waiting for leaving cert results and what where they hoping to do. They would certainly have made some small talk in my opinion and not snapped oh do you want to postpone so! Maybe it’s just me but having a bit of banter and small talk with consultants does make things easier for me. Whereas I do think both he and his nurse think I’m off the wall!
Back to the vampire in September and to see him after that, so looking forward to it.