Frustrations?
I remain hugely frustrated at the ongoing drama of the damage done to me by prescription medications. I have now been on a heavy steroid medication for 16 months. The doses have varied along the way, but I’m pretty certain they are doing me a complete disservice now. I don’t believe they’re actually ‘treatment’ at the current time.... rather just yet another oversight that has ended up leaving me on a heavy duty medication for far too long. I’ve been on them so long that I can’t just stop taking them and have to gradually reduce them down. It’s really difficult. I’m not going to lie. It affects me both physically and mentally. I’ve had anxiety, physical pains that have reduced me to tears, and generally can sometimes feel pretty awful.
Thankfully my local medical support team (yet again, not my oncology multi disciplinary team) are helping me with this. After so long on them though, I am now essentially fighting a form of prescription drug addiction. Ironically, this is a subject I’ve written many analytical reports on for work in the past. Northern Ireland has a huge problem with over prescribing, and prescription drugs are responsible for many more deaths than the likes of heroin and cocaine etc. Some of the abuse is illicit of course, but much of it is also led by over prescribing.
I will get past this stage of the journey, but it’s horrible, and something I’m writing honestly about in the hope of helping others. Medication is an essential part of most people’s cancer treatment and I’m not suggesting anyone don’t take the advice of the experts. However, I’ve also learnt the hard way that doctors make mistakes and not all of them are paying attention. To some, you are a number. They are overworked, some are extremely jaded, and some are just crap at their jobs! It’s not the first thing you think of when you are given a diagnosis of incurable cancer, but unfortunately you need to try and take some control over your own care. You shouldn’t have to, but the reality is that our Health Service isn’t always getting things right.
This leads on to my second major frustration of the past few days..... We have managed to unlock additional funding for the Health Service. It’s all over the news. Great! What should we spend it on?? Joining up systems? Cancer care/ research/ treatment for the one in two people now being diagnosed with it? Additional care for our increasing older population? Did anyone do some analysis to see where the money should best be used? No. Of course not. Somebody randomly picked “more midwives”. Now don’t get me wrong, midwives do a great job and are of course needed, but....... would money not be better invested in dealing with the biggest cause of deaths in our wee country?
Fears?
See above! I continue to fight hard and my scan results are better than I could ever have expected. Generally I remain positive and I continually remind myself of how lucky I’ve been, how loved I am, and how well things are going. And yet..... every so often...... there remains a shadow hanging over me. A dark cloud that just sometimes can feel like it’s literally crushing me. Like hands pushing down on my head and squeezing my chest. Thankfully it’s not a constant state, but it can be almost debilitating when it strikes at its worst.
Friends?
Keep them close. Along with family, if you’re lucky enough to have a good one. My family is small, but my husband, son, sister and father have undoubtedly ensured my ability to get through the hardest parts of this journey.
I’ve also been lucky enough to have friends around me who lift me when I need it most. Yesterday I was having a rotten day. I was sore, feeling unwell, tired and just damned grumpy! I had an appointment to go and visit work colleagues in Belfast. I say ‘work colleagues’, but the reality is that those lines have completely blurred now. Many colleagues have become so much more. True friends. People I like and who do so much for me in so many different ways. My trip to Belfast yesterday turned into a lovely, positive, exciting and happy day! Thanks to some amazing friends. Although it may not seem it from this blog entry, it lifted my mood hugely. I shared deep conversations, laughed myself sore and was overwhelmed by an act of kindness and surreal turn of events. As a result, I slept better last night than I have done in ages. Today I’m fighting against a cold and am feeling a bit grumpy again. But I have thoughts of yesterday and all the positivity around me to drag me out of the doldrums.
A bit of a negative blog, so I’ll end it on a positive note. I am here, I am ‘living with’, I am surrounded by love, I have some really exciting things to look forward to. Not least my sister’s wedding in just over a week’s time. Plus, of course, our charity fundraiser rock gig in the Diamond Rock Club. I’ll end with a plug for what’s going to be a brilliant night out...... Doors open from 18:30, five local bands giving their time and energy up for charity, first band on at 20:00, lots of exciting auction and raffle items, all money raised in aid of local Macmillan charity, footie on screens downstairs. Come along! Or if it’s not your thing then you can still donate via Just Giving (just look up Triciafest event..... I know, I know.... cringe..... it started as a joke but it stuck! It’s for charity, give me a break!)
Right, I’m off to give myself a shake and get away from screens. Apologies for the rant and the slight glumness. Temporary state. Normal service resuming now xx
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