I got into a rage this morning, I see someone being bullied, treated unfairly, and do my upmost to help, then I get down and start getting upset and my dad comes into my head, the last moments I spent with him and here are the tears stinging my eyes again, stabby feeling in my stomach and those recurring thoughts about death. I remember saying goodbye to him, I'd got a call off the hospital informing me to get there as soon as I could, he'd suddenly collapsed for no reason at all, one moment he's sitting up and next he's gone. by the time I'd got there he was cold, gone, just an empty body with all that personality dissolved away, loosing both parents is unexplainable, until it's happened you have no idea what it Fees like.
My dad had myeloma, it's a blood cancer which hides in the bigger bones in a patient, where the bone marrow Is, thanks to macmillan cancer care for making it easy to understand. Basically when someone Close to you is first diagnosed, it's like learning a new language, or some mad algebra equation thing that makes zero sense, I learnt that under a microscope, normal blood cells look like a finger cot, those things in pound shops that look like condoms for liliputians, anyway...! In a myeloma patient, there's the reddish pink finger cots as per, but with what look like squished blueberries too, horrible things which need to be zapped with chemo, and what a Bastard chemo is, vile tiring treatment that is knackering, so, the thing with myeloma is, you can have it and not know, there's no real symptoms as such, maybe a bit of back ache, tiredness, stuff like that, anyhow, my dad only found out from having a stroke!
So, we lived near Chester, dad and mum had to travel to London to get all the diagnosis done, that's the nearest place for it, the hospital organised all the transport for us, which was amazing, I carried on working to take my mind off it. There was the odd moment I'd crack and have to go wash dishes, the managers were not really supportive in all honesty, it was a place where there was too many chiefs and not enough Indians, I took holiday off, I was nearly at breaking point. It seems to me from hearing lots of other people's experiences that it's the person with the cancer diagnosis who is the strongest, but the people who are closest to them are the ones who fall apart to bits, I feel like there wasn't much in the way of support, I ended up being a carer for both my parents, my mums health took a dramatic turn for the worst, her mental health was very poor, I've talked about it in old blogs I don't want to repeat myself too much, and she was vile, what's the worst thing a mum can say to her child, 'I wish you'd never been born' man she was horrible to me, my dad was great, he had his moments, it's no wonder when he was seeing his wife in such a state and he needed the support of his wife yet there she was feeling sorry for herself, sometimes she would try to start a pissing competition for who had the worst health, my dad wasn't like that, which was good, it was a very toxic environment, all my friends has dispersed, apart from an old workmate, and my now partner, everyone else just avoided and made excuses, I Get it, but I needed people, it did show me who my real friends were though, it was a brutal way to find out but very revealing. Anyhow, mum got put into a home, it was bittersweet, but more and more, our little bungalow which was cosy was being turned into a workplace, carers coming in 3x a day to help mum, my partner helped me get much needed help, I don't like talking about this much, but as it's relevant to mention, I'm disabled, and I was unable to lift my mum as I'd done permanent damage to my back, it's really frustrating as to look at me, I look strong and healthy, I sometimes wish people were able to see so they could understand, but it is horrible to explain to people because its invisible, until I'm in pain, the pain makes me sick, when I am in a position to have to explain, I hate it, I feel its nowt compared to what was happening to my dad, I feel like I'm hooning about my ailments, I hate that. It's a lot to explain and I'd rather not, there's my dad at stage 4 with his myeloma, the chemo had stopped working, so it was a case of how long those little evil squished blueberries were going to come out of hiding in my dad's bone marrow and then it was a case of days, weeks, months, one of the big clues was his legs would start weeping this yellow green stuff, I was trained by nurses to treat and dress them, plus I'd had experience from my injuries on my leg when I got run over so, if you want to know about ulcers and such, you know who to call! Aaah jk, I'm not that good, but it was good to know, life skills! Yes my leg, it got left untreated and there was a hole in my leg, I have nerve damage in my leg now, the scar is a minger, this feels a relief to talk about, i like to add humour to it, otherwise it feels like I'm moaning or feeling sorry for myself, that's my worst nightmare, I have experienced people having a sort of battle about who has the worst health, my mum was bad for that, she used to try doing it with dad and me, and I've seen women on the bus to town doing it, it's vile, also sat with my dad in clinics, patients sat next to each other discussing who has the worst cough, and going to and fro 'well my hernia is so bad'
Mine has Me in agony all night'.
'you don't know you were born, mine has me in hospital for months:
' well, my toe had THE Worst ingrown nail in it'
'oof, I've had that, on BOTH big toes, was in here for months, they were moving me nearer and nearer to the door everyday, thought I was a gonner'
Goddam it people are irritating, then there's my dad sat there, not knowing how long he had left, the blueberries of doom we called it, is it mad that dad and me would be in fits of giggle while we were waiting for his treatments? I think humour at that time was much needed, including the banter with the nurses, we got to know them all and dad and me became like a well known duo, I'd be sat knitting and there's dad waiting for his chemo. I never knew that chemo was Available in an injection form, the time before that, he had chemo in tablet form, I never knew!
Don't get me wrong it wasn't always fun and games, sometimes he just wanted to be home, in a blanket, with the cat on his lap, with a brew, I don't blame him, the treatments were tiring.he was having Dialisys 3x a week too, so there was a few things which were pretty frustrating, but they were all a case of waiting patiently, or impatiently as it goes...
1. We'd have to wait while the chemo was prepared and that took 4 hours, the actual treatment itself was over in 2 mins
2. the dialisys treatment, we'd have to wait for patient transport there and back, which we were thankful for as it was free, but, waiting up to 3 hours sometimes more to get back, dad would phone me that he was getting annoyed waiting, there wasn't much I could do apart from phone up the transport to track them, that was really annoying and I sometimes felt like I wanted to just chuck myself off the roof, wouldn't of helped the situation. There was the time dad had an operation to put a line in his Chest for the dialisys treatment, we had to go and pick him up in the end as he had been waiting for about 5 or 6 hours, he was all kinds of rage, and had been put under general anaesthetic, I have never raged so much down the phone as much as I did to them after that, it took the piss big time!
Before mum went in the home, she would sometimes have a wobble and have a fall, then I'd be waiting for an ambulance to get her, there was no carers at that point too and I'd done more damage on top of the car that had sent me flying then going smack bang on the road, so I'd gone crash bang wallop bonnet, windscreen, flying up in the air, head smack bang on the headlight then a good (or not so good) smack bang landing on the tarmac, bleugh, I relive it a lot, I get a tonne of flashbacks, of the car coming out of nowhere, but anyway back to the story keeping it relevant, here I am lifting my mum, and my back and other RTA injury bits are fooked. Mum's giving it 'well how do you think I feel I can't walk' well fuck, not the time to make it into a competition., and then dad would come home, 'oh, she's fallen again, mum giving it' iya luv, how was your dialisys, I'm in a bit of a pickle here' and the ambulance team would arrive, roll their eyes, look at me not able to see my disabilities which makes me feel useless, I have to explain about that in a nutshell, put it this way, it was a relief when she was put in a home, social services seen the error in their ways not doing so sooner, what if both dad and me were out, mum was on her own and there was a fire, with her mobility being poor, she'd be unable to safely escape, so there we are, just a shame she was so stubborn, wouldn't listen to any physios advice, she didn't like the one that vistied the house, and wanted the one who was in the day centre she stayed at after being in hospital, it was like a recovery place to get you ready for home, and when she would get back home, she would say she couldn't walk as the carpet was different, she wanted the other physio, and missed the staff, so would sit crying with her arms crossed like a spoilt kid. When she was in the nursing home eventually, she refused any treatment and very quickly deteroiated, at first she tried to blame me and make me feel guilty, but she wouldn't help herself, my partner and my dad said I'd done everything and then some to help her. But the fact is, she wouldn't help herself, and as she had poor mental health and the schizophrenia she had meant she'd listen to voices in her head rather than the nursing staff or me meant I was facing a loosing battle, truth be told I'm riddled with guilt no matter what. Reading at her funeral was difficult, maybe one of the hardest things I've ever done, then that horrible feeling came, I'm stood talking infront of all these friends and family, and there's my mum, dead and cold in a wooden box to the left of me. It's vile and lonely and depressing, I keep getting it a lot, that feeling where all the personality has drained away from them, I'm shit scared of the whole death thing, I'm frightened, then 5 months after that my dad was gone too, and there I am again, In front of my dad's close family reading about him, but this time it's different, I feel fondness and closeness, but still, he's lying dead and cold in that wooden box, all those squished blueberries have gone but so was he, it's horrible and I don't know if it's 2 or 3 years later, it's not getting easier, I'm trying to explain it as best I can, the cold feeling, a dead body with all the personality just gone, it's horrible, but this is theraputic to write about. What made it worse was mum's sister living next door, but she was zero support, she blamed me for my mum's cancer, saying it was my fault. That I was in her tummy for 9 months and because I'd been there it was my fault, fair enough, I can it figure why that woman hated me so much she was supposed to be my Aunty, my family! They were a bunch of dicks, one of them used to say I had a black mark on me Because I wasn't christened, I told a teacher about it asking could she see the black mark, I remember her hugging me so tightly telling me there wasn't one, but I'd been told repeatedly by my mums family I was ugly, I was the unwanted one, just like my cousin the same age as me, the older ones would get spoilt, and then there's us 2 who'd be lucky if we got a packet of crisps, even then we were told to feel guilty about having the crisps as we didn't deserve them, all because we weren't christened! Man, the damage done was long term, I can't just get over that, Nore can I the stuff with my mum, dad and Aunty, please anyone reading this understand, this is deep rooted stuff, people who have mental illness can't just get over it, i know people mean well, but this is deep rooted stuff, I've been waiting over 2 years on a waiting list to be treated. And still No news, especially now with a global pandemic kicking off, plus tories and Brexit don't help, what a mad time this is, just be kind to people, you don't know what they are going through. We are all having our own different circumstances and no 2 are the same, things that help 'you are worthy' 'im here for you' only if you can honestly mean that one! 'I might not have the answer but just type away your feelings/phone me and I'll just listen' "
Helpful Contacts
116123 samaritans
myeloma.org.uk
Macmillan.org.uk
Xxx Netty xxX
Oh... I realise root and rooted mean something totally different to any Australian readers, here in the Uk it doesn't mean the same thing, I've just had a giggle thinking of that ☺️❤️
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