I suspect though that it shouldn't really be the patient ringing the oncology Ward to check what bloods the GP's surgery needs to take. I also suspect the patient shouldn't have to feel like a demanding diva because she has to beg for a particular nurse to take her bloods, due to agony inflicted by others.
I also suspect you shouldn't have to physically feel stress levels rising because you don't trust the competence of some of the places that are tasked with keeping you safe and well, and because you waited all afternoon for a promised call back to ensure you are booked in to get the bloods you need to get done. I'm sure it'll all work out and be grand, but what may be routine to some often has a huge impact on the patient and family.
I am supposed to have bloods done the day before my next treatment. It has to be the day before. The results determine whether I get my picc line in and whether I get my treatment that day or not. Pretty big deal to me. Especially when my sister's flights are booked for her to come over and be with me for chemo again. I have had to phone oncology myself and get a list of what bloods need taken. I have yet to get confirmation from my surgery that I'm booked in to get these taken and that my 'bloods guy' (the only one who can get blood without either using 10 veins, of leaving me looking like I've had my arm stood on by a very heavy person) will be the one to do it. Slightly demanding? Yes, probably. Hugely important to me? Yes, definitely.
These things could be so easily sorted. Instead, I'm left stressed and with a pumping headache (granted, not helped by the thundery weather....... gah!) I'm Thunderstruck.
Ah, such a long blog..... and so negative. Taking the good out...... I'm dealing with it. This is the real world. Be it dealing with a cheeky person in a shop, trying to pay a bill online, trying not to get upset over something on the news or trying to organise getting bloods taken.......these are things that the real world throw at you. I can't keep anxiety down by just not poking my head out into anything stressful. There are going to be annoyances and rows and hurt....... I'm getting so much better at dealing with all that stuff now. That means I'm getting stronger. Some of it I shouldn't have to think about, and it makes me cross that I'm having to, but the fact is that I'm doing it.
Mentally stronger. And physically it seems I'm doing ok too! Sometimes I get really tired and I definitely need recallibrated..... to the right, to the right, everything you own in the box to the right........ Beyonce?? Anyone?? She went to the left, I tend to go the right.....But I went to my Cancer Keep Fit class today and had my 'excellent level of fitness' confirmed..... I didn't have that before for f*ck's sake!! I suspect the bar was being set very low. Designed for cancer patients undergoing treatment, the class is a great way to get a bit of physical activity, whilst meeting others on their own journey. I enjoyed it thoroughly. I did take a friend with me this time...... I would imagine there was much debate about who was who's carer!! Physically she's obviously in a much better place, but mentally....... she makes me seem completely sane!....... which is partly why we've always been friends!! She makes me laugh. Anything goes. A friendship with depth and understanding. Someone I can be myself with completely. Someone I have cried with. Someone who is by my side unconditionally. My surrogate sister, especially lovely when my own can't be here. Someone to laugh with, often to the point of hysteria.
My point in this hideously long rambling?? I'm hugely frustrated by the lack of a joined up approach in our Health Service, but I'm getting stronger all the time, in every way. Thunder storms are the ENEMY of people with brain tumours. Oh, and you'll never beat the love of good friends and family to help you through tough times.
I suspect I may have made those points before......... but now they're off my chest again. Xxx
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