I recently had one of my sisters come to stay for a week, from Melbourne. It was great to spend time with her but it felt different. I think because I am conscious of how different I am now and how often I felt sore or tired, and had to lie down on the bed, or go for a sleep. I probably went out and did more in that week than I have for a long time, but would often pay the price for it the next day. Sometimes I had to talk myself into doing things but always enjoyed it once I was up and about. But I feel like our lives are so different now, I can’t really put my finger on it. I think it probably has to do with the distance apart we live, we don’t talk much, and when we do, we’re catching up on everyone. When I feel down, I don’t pick up the phone to talk directly to her. It saddens me...we are drifting in different directions. But that is inevitable. My sister has good health and can do fun things with her husband, family and friends. I feel like shit most of the time and don’t feel like doing anything and my friends all go out and do fun stuff with other friends. I don’t feel like a fun person anymore. My gawd, I think thats it! I don’t feel fun anymore. I am angry and resentful because of this stupid disease. Its kinda hard to be full of fun when you are bloody sore and half asleep most of the time...but, it was lovely to see my sister and to have that time with her.
I’m glad to say my recent oncology appointment and CT scan went well. No new movement on the cancer front, therefore my existing treatment continues to handle things nicely, or as nicely as it can. I was a bit nervous just before I got my results. Its been four years without any further spreading and I know one day the news will come where it has changed, however slightly it may be. And so this time I figured this could possibly be the time. Thank goodness I was worrying for nothing. The oncologist said they hope to get five years run out of exemestane before it starts to falter from its job and patients need to be changed to a new medication. So I have a year up my sleeve still, as January marks four years since being diagnosed metastatic (terminal).
I have read so many things about how oxy meds are very addictive and I could never understand how, or what form it takes. But I think I am beginning to find out for myself. (Oxycodene and oxynorm along with paracetamol are my regular pain meds). I rely heavily on the oxy’s. I usually take my first dose at 6.00am and then every four hours from there, with a maximum of four doses. But honestly, it isn’t enough. Sometimes I am taking the doses in 3.5 hours instead of waiting for four hours as the pain is starting to break through. And now my usual wake up time is about 4.00am-ish and along with this comes nausea and then the pain in my back kicks in. I don’t want to take my first dose of pain meds too early as it may stuff things up for the other end of the day, maybe I should try it. But even getting out of bed to sit up on the side of the bed to take the meds can be so difficult. And of course the side effect of these drugs is tiredness. It is so hard for me to wake up properly and keep my eyes open, to start the day. But the on-going pain is so, indescribeable. I hate it! I hate having this goddam disease! I am so fed up with myself and this bullshit life. It really is unfair. I try so hard to be grateful but honestly this is no picnic. I often want to take extra doses of oxy because when I take them, they usually kick in about 20 minutes later. I don’t want to wake up at 4/4.30am and wait until 6am to take pain killers. Sometimes throughout the day I feel the pain creeping back in and after a couple of hours I want to take more but know I need to wait a bit longer. I worry that those thoughts of taking more than I am prescribed will become stronger and my dependance on them become even tighter. And the fact that they are a controlled drug, it is such a rigmarole getting a damn script. They only prescribe so many per month. At least when I was on codeine, I was getting scripts for three months, now its every month that I am hassling either the oncologist or my GP.
I’ve previously mentioned that sometimes I wonder if I am using the cancer as an excuse. Do I talk myself into the way I feel? I happened to mention this to my mate who came to my oncology appointment with me last week and she told me off. She said that don’t I dare minimise what I am going through, that what I feel is very real and of course I know it is. The pain and the tiredness are definitely not a figment of my imagination. But I was so grateful for her reaction. When I have said this to other people, more times than not they agree with me. Occasionally someone will say I am talking rubbish, but mostly people half pie agree with me. I don’t know if its because they don’t want to appear to be disagreeing with me or is it that my friend understands a lot more due to her previous nursing experience and the fact that she has had cancer and while currently has been given the all clear (long may it stay that way!) still feels some of the effects such as the tiredness / fatigue. Fatigue is a much better word to use. It expresses much more than the word “tiredness”. Fatigue is a “thing”. A very real thing. I’ve been so tired and sore of late, you can’t help but get upset about it. But perhaps the key is that I should try to push myself a wee bit more, if theres enough in the tank I mean. My unmotivatedness is very real and I know sometimes I do have to push myself to do things. And once I do them, I feel much better for it. I guess it is a case of see how you are each day and what you can handle and don’t pressure yourself to do more than I can.
But at least I have something to look forward to with going to the beach for the day very soon - can’t wait!!!!! So blimmin excited!!!!!!
Hope you all have a safe and Merry Christmas, and enjoy the day with loved ones
Sunday 22nd December 2019 - 11.33pm
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