It’s going well but it’s a slow process. Frustrating but necessary. I’m not naturally patient and it’s difficult for me. The fact is that I have to get used to it! Tough luck T..... this is life with a cancer diagnosis. In reality, in many ways, this is just life!
I remain both angry and alarmed over the irresponsibility of some of the medical experts, particularly the laid back attitude to prescription medications. Is it really up to the patient to research their own treatment and start questioning why they’re still on steroids after 15 months, when they’re not recommended past 3 months??..... Do my so-called ‘experts’ in Belfast not care that I am having to ‘negotiate’ both steroid and anti seizure medication reductions with my GP because my oncologist and ‘dedicated’ oncology nurse don’t seem to have time or particularly care?
I’m being good and obeying the GP and Hospice Nurse. Thankful for them and their willingness to understand I don’t want a pill for every ill! I’m not suggesting we try and beat cancer without using pharmaceuticals.... I know there’s scientific evidence for various treatments, and I’ve done and will continue to do, what needs done. BUT I’m sorry to say our Health Service is broken. It has no money, no leadership that I can see, and needs a complete overhaul. For every wonderful and dedicated doctor/nurse/staff member, unfortunately there are also jaded, tired and overworked ones; the latter causing serious harm. Harm to the patients they committed to protect, and also to themselves as people.
I listen to our politicians, both locally and nationally, and I hang my head. I’ve even had a few moments where I’ve considered a Jerry Maguire type moment of starting a new political party! One where nobody cares about orange or green, and where we focus on the REAL issues impacting on us all as human beings. But then I remember it’s not my job to save the world..... that I’m tired...... and probably a little high......!
So I’m going ‘back to the Riverbank’. Remembering not to rush. Learning to live the new life I generally love and much prefer to the old one! Still determined, still working hard..... but not saving the world. Just myself. Xxx
Later that same day.......
I wrote the above entry this morning. Early. I was exhausted and, as ever, trying desperately to put into words how I felt. I wasn’t in a terrible place, but I’ve definitely felt better.....
Now, later in the day, I feel a bit better than I did earlier. I don’t want to totally spam everyone with constant blogs, so I decided to sneak in this wee update on the bottom of the existing one. A longer blog, but one entry.
Why am I explaining this?? You don’t have to read! If I’m boring you, close the blog!! Don’t read it. I won’t be offended. I don’t even really know who reads it anyway. I know some, because they’ve told me or commented, but most just quietly dip in and out I think.
Anyway, so where am I now? Physically, much the same. On and off indigestion, feeling bloated and uncomfortable at times, constant bathroom use. Keen to get the medications managed properly, in particular the steroids.
Mentally, I’m feeling pretty good. I’m exhausted. I’ve been awake since just after 3am as usual, so it’s impossible not to feel like I’m running on fumes a bit. The insomnia (which I firmly believe is due to medications) has been ongoing and it impacts on everything. I feel an even bigger pity for my poor husband, who has to share a bed with someone who gets up every few hours to use the bathroom, and tosses and turns all night.
But I’ve said it before.... the cure to insomnia is definitely not to stress out about the insomnia! So I’m trying to change my attitude to it a bit...... if I wake at 1am then I’ve probably slept solidly for around 3 or 4 hours. That’s a great start! If I need the loo then get up and go quick.... don’t wake up properly..... just go and then snuggle back up. Don’t worry about the time. Don’t look. Ignore the birds.... sometimes they drink!!
So despite still being exhausted today, I am feeling ok. I know I can function. I’m not stressing and I’m being kind to myself. I’m taking my time. Yesterday I managed to gently do a supermarket shop..... yes, it was with hubby’s help and I had to sit at one point. But I didn’t pass out, I didn’t have a seizure, I didn’t fall over...... I did the damned shop! Today I had a short walk. Again relying heavily on hubby. But that’s ok..... the fresh air helps manage fatigue anyway. I took my time, we didn’t go too far..... all good!
Then I cooked! Well..... mixed...... I made a lovely chicken, scallion, tomato, mustard and brown pasta salad thing for our lunch. Very healthy, very tasty and another step forwards with the diet part of my ‘programme of work’.
So I’m much more positive this afternoon. Tired but not being hard on myself. Looking forward to going to work tomorrow...... gently......
Yes, i want rid of this damned brain tumour, yes, i feel frustrated at the slowness of sorting out my medications (but understand it’s the only way to do it), yes the Health Service can suck a bit....... but I am here! I’m alive and living a bright, fulfilling life!! Let’s keep that up!
That’s it. That’s my brain downloaded for today. I’ve nothing more to say. I’m good. Life is good. Still winning Xx
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