Coming to terms with the loss of both my parents is something I am trying to do at the moment, it's the hardest thing I've ever experienced in my life, so far. It's strange to be sitting next to someone chatting one minute, then the next, all the life and personality is just gone, and all that's left is a lifeless and cold body, and when it's your mum or dad, the very people who are responsible for your own existence, it is ridiculously difficult. Mum, dad and me had some very difficult times, I watched them go through ill health and was their unpaid carer, I feel like a failure because I looked after them, but when they were battling diseases like cancer, dementia, and a list as long as your arm, it was never going to be easy really. Would I do it all again if I could? Of course I would! All I can think about is all the unanswered questions I will never know the answer to, the unresolved bond between my mother and me, and that there was nothing I could change about that, as she was more convinced by the voices in her head than she ever was of me, I'm struggling with how much damage was done over the years, and I get panicky for no reason, all because of unexpected screams, demands and tantrums my mother used to have through the day and during the night. I just hope this doesn't come across as me speaking ill of the dead, I'm talking about this as I'm pretty sure there are others who will of experienced it, and it stays with you for a long time with someone has been in your life who has schizophrenia. The main reason it's frightening is I was unable to see, hear, smell and experience what she was seeing tasting and hearing, if it was frightening for me, I can't even begin to imagine what it was like for her. She talked about seeing faces flying towards her, seeing eye balls falling down the wall, believing I'd poisoned her food, and carrying out whatever the voices were demanding her to do and perform, while having several more people living in her head who were coming to her to tell her their troubles, or to tell her she was in danger. She would believe them that the house was going to be knocked down, she'd believe the fresh meals I'd make were poisoned, so would end up throwing most of it on the carpet, or shoving it down the sofa, along with a lot of her meds. It was strange to see the woman who gave birth to me behaving like this, it was like I'd become the mother and she was the child, it frustrated her, I can totally understand that, plus when you've got a lot of contradicting voices demanding you to say and do things, it must of felt like she wanted to scream, which she did, a lot! Along with loud crying, then suddenly laughter, then more shouting and arguing, I can only describe it as it looked like she was on a conference call with a blue tooth head set on, and if I tried to talk to her, it was like I didn't exist, unless one of the voices commanded her to talk to me.
I remember it all started when her father passed away, he was terribly abusive to her and none of her other siblings, apart from her oldest brother. Her dad had put her as his next of kin, mum announced his death in the Liverpool echo, and next thing we know, a load of unknown family crawled out of the wood works, there's nothing more disgusting than people fighting and arguing over a deceased persons belongings and money, and where he was going to be buried, going against her dad's wishes, he had a plot in liverpool, and this lead to her and her eldest brother fighting and arguing, that plus having to identify her dad's body seemed to send her round the bend, also sorting out all the arrangements and paperwork which comes when someone passes away, which I have now learnt is an uphill battle, that times 2 and it being my parents, it is enough to drive you berserk, but, for my mother, she found it difficult as she was burying her abuser, but, she treated the whole event as if he had never done any wrong and that he was the loveliest person you'd ever meet in your life, almost saint like, but from what I'd heard, it wasn't the case, far from it!
She come to learn, from the scum family that came out of nowhere that her mother had passed away too, and she was a nasty piece of work, a Catholic who, like the rest of that clan, could dish it out and you couldn't do anything right, but they were perfect, no matter what you did or said, you couldn't do right for doing wrong, they are all a complete mind fuck. Mums cousins weren't exactly lovely either, a clan of black and white witches, who believed they could cast spells and put curses on people, also they believed they were psychic, they were all very weird, and my dad and myself felt very out of place and decided very quickly we would have nothing to do with them, and let mum carry on if it made her happy, mumbling about a load of rubbish and giving readings, I've never seen and heard such utter garbage in my whole life, they also believed that they were related to the royal family, and owned a castle in Germany so we're royalty there too, I've never heard so much codswallop in my life and wanted the ground to swallow me up, I have had nothing to do with them since, any of mum's family, and have even come off Facebook as they've made fake accounts of me, and sent blackmailing messages to Me, and accused me of allsorts of rubbish, feel a lot happier without Facebook now and its mad to see how addicted people are to it, I get some strange looks when I tell people I'm not on it, like I'm some sort of abnormal alien, I've got better things to do with my life, I've lost a lot of friends since not being on it, and also a lot of people saying that I'd blocked them and having to explain that I'm not on there but I can be contacted in other ways, I haven't heard a word off them, despite my efforts to text or tweet or instagram message or email, nothing was the loud reply, so basically you don't exist if your not on Facebook, good riddance I say if that's how people want to be, shows how fickle they are, and I don't need people like that in my life if it's too much effort to get in contact with me any other way than Facebook messenger, what a rubbish society we've become if you can only communicate to people via an app and not face to face! Not naming names, I had people who would have great conversations on messenger, then in person, couldn't get away from me fast enough, there's definitely something very wrong with that, and it makes me feel like I'm worthless, but to be honest, let's think of it that they aren't true friends really, it says more about them than it does about me, I'm glad to leave the whole u ok hun, Inbox me community to themselves, total narcissitic, psychotic, crap bellends!
So, going back to the pinpoint of when my mother started to get ill, mentally, dad and me didn't have a clue what was happening to her, I'd only ever saw stuff like this on tv or in films, I managed to get her gp to see her and he diagnosed her with bipolar disorder and psychotic episodes. Throughout the years, they tried different medications, and it was difficult to get the meds right as she was good at hiding it, she was very sneaky about it, and so was sometimes getting the wrongs meds, she was also halving her meds, and sometimes on purpose not taking them, as the years went by, with dad bring sick with cancer and a variety of diseases and illnesses, he needed as much rest as possible, but that was damn near impossible, with mum's diseases and illnesses went from bad to worse, and dads bed being in the same room as mum, he was getting no peace, she would be crying, screaming, shouting and punching at things that weren't there, so I can hardly blame dad that he would go and sleep on his couch, and leave her to get on with her 'friends', she's would shout for me to get her things and to tell things that Weren't there to do one, I got no peace, neither did dad, and mum survived on very little sleep, dad and me got the rest that we needed when she was sectioned, I've lost count how many times she was sectioned!
One time, in the early hours of the morning, we heard the front door close, and we woke up to police officers knocking on the door, dad was down stairs in handcuffs, and they thought they were going to find me murdered in my room, I explained to the officers that my dad hadn't and had never raped me, I was completely safe and unhurt and demanded they remove the handcuffs from him. Mother had also accused dad of kicking a baby out of her, they had found her walking along the motorway, naked apart from a bath towel, carrying a load of hand towels saying that there was a dead baby in them, it was the most harrowing, and upsetting experience ever, and how could dad and me ever forgive her for putting us through this? She insisted it was her brother telling her to do and say these things and yet again she was sectioned. The hospital staff told us continually that she would get better, but I never again seen or knew my mum, she had since then been replaced by some woman who was apparently my mum who I had to look after, and make sure she washed and dressed and took care of herself, there was a thin line between caring too much and not doing enough, it was very stressful and hard and it has no doubt affected myself mentally, I now suffer from PTSD along with, in a non fashionable way, anxiety and depression, and after I was in a road traffic accident, I have a bunch of other ill health to deal with, so having an injured back, spine, and leg didn't mix well with caring for 2 parents with limited mobility who needed to use wheelchairs. It took a long battle to get help with caring for my mother, but eventually with the help of a local mp, I got the help I needed in lifting mum in and out of bed. I've found it hard to explain to people that I'm disabled, I look perfectly fine and healthy until people see me with my walking stick, and people stare which isn't very nice, I can tell they are making presumptions about me and I'd honestly wish people would ask rather than stare and presume!
So at the time of writing this blog, I'm still waiting for counselling for bereavement support, like anything these days, there's a list as long as your arm for counselling, so lots of other people needing it too, I don't know how many more tears I can cry, I thought I'd cried them all. When people ask if I'm ok, they can't really understand what's going on financially or mentally, they think because it's been a few months that it's all ok now, but truth is it seems to be getting harder. I want to tell them things but can't now because they are no longer around, I don't know the answers to some things people ask me, and its frustrating because I will never know. To me, my real mum passed away when she got mentally ill, the person she became wasn't my mum, I refer to her as my mother, nothing I could do was ever good enough for this one, after she lost her mobility she got even more vile, and when I was in the accident, I thought she couldn't get nastier, but she did! Then, if anyone came the house, carers for example, she would be telling them how great a carer I am and that I was a great daughter, then, as soon as they were gone, it was back to being nasty. It got to the point where I had to help her with personal toilet care. If you can imagine doing this with someone who is a dead weight, and having a back and spine that is badly damaged, you can begin to imagine how much of a struggle it was, it wasn't the nicest of tasks to carry out, but it was one of the only times she was ever pleasant to me during her final years, she would always thank me, I'm just glad that she wasn't horrible to me while doing that as I don't think I'd of coped well had that been the case, when the carers came to help, they thankfully relieved me of that duty, mum used to say they weren't as gentle as I was, I suppose they only have minutes to do everything, and as they were doing bits for my mother, there's someone else waiting for them to turn up. I had no other family close to help with caring for my parents, no holidays, no time off, it was a 24 hour round the clock job. It is a hard job but my parents told me they were both thankful I did it, rather than someone they didn't know coming in and out and they had someone they could trust with their bank details and finances, there's terrible stories in the media of carers taking people's cash, I don't know how they live with themselves. I feel sad my mum ended up in a home, she changed even more in that place, but it was for her own safety, because more often than not, dad would be receiving one of his many treatments in hospital, and I would be at an appointment so she would be left on her own, what if something happened when we weren't there? So we came to the decision that it was best for her to go in a council run care home, I went round a few to see them, and it all came down to man power, she specifically needed 3 nurses to be able to lift her, and nowhere had enough staff to patient ratio to be able to provide that amount of care, we found a home on the outskirts of town, and it seemed lovely, I honestly only went to see her once, as she was shouting at me that I'd put her in a home and made me feel really bad, I was told to go see her by a social worker, because she was under mental health services, she had a social worker, I told him to mind his own business as she had caused so much psychological damage over the years, but he insisted dad and me should go see her as it was obvious to them that she only had a few weeks, days hours to live. Dad and me expected her to be sitting up and talking to voices in her head and to be her usual chunky self and be eating them out of house and home but we were shocked to see what she was like. As we entered the room, the radio was on, and there was what looked like a very old lady in maybe her 90's, thin and body lying helpless on the bed, almost skeletal. I don't know what the hell had happened for her to get like that but something wasn't right, I would probably be getting the blame for not going to see her, but anyone who would of spent 24 hours watching the way she treated and talked to me and wanted to remain sane and not send themselves crazy would of done the same, I had a full time job helping dad to the best of my ability while trying to look after myself struggling with my own disability, I had an op on my back and have to have another next year, a lot of damage has been done to my body from pushing wheelchairs, and also from a car knocking me speeding, so my priorities lay with looking after my physical and mental health so i didn't end up in a wheelchair myself, I was already at that stage needing walking aids to get around.
So, the shock of seeing my mother looking like a frail 90 year old lady had stayed with me, my dad looked so sad and afterwards I cuddled him while he cried after seeing her like that, he died 5 months after she passed away, his cancer (myeloma) came back, it had completely made his kidneys die already, and had had a course of bortezomilb which is a highly effect chemo for treating myeloma. He had a whole year where it didn't come back, myeloma at the time of writing this blog is treatable but not curable, I hope for a cure for it, it kind of goes into hiding in the bone marrow in the big bones in the body, it's not in everyone, just in people with myeloma who have this para protein, it looks like squished blackberries under a microscope, anyhow, it came back a year later, and his specialist doctor kept a close eye on it and he was admitted to hospital after his legs started leaking, I spotted it and dressed them and informed his Dialisys nurses who seen his legs swell significantly during his treatment one day, he had this 3 times a week, so they kept a close eye on things.
He was in hospital for his 3 final weeks, and he wanted to go home any watch the football and have a ciggy, yup he smoked even though he had the beginnings of emphysema, and had cancer, he had the tools to quit smoking, but none of the will power, he'd smoked since he was 9 so it wouldn't of been an easy habit to give up. I didn't expect that to be his last few weeks, several times over the years I was told by nurses and doctors to get ready to say goodbye and I had sat by his side in intensive care holding his hand but nothing prepared me for it to actually happen, as all the times I had been told to expect it, the next day he'd be sitting up and eating a butty or jelly and ice cream, which he would request, it being his favourite. But this time, there was no fore warning, I'd been to see him and then had a phone call as he was getting his Dialisys to bring in a pencil when I came to see him the next day, he sounded like he was slurring on the phone, but I put it down to that he was having his treatment and was tired. He phoned me later that night not to forget that pencil, he sounded very serious and sad with that request. I never found out why he wanted that pencil as I was on my way to see him and got a call off the nurses in his ward to come urgently. He had collapsed very quickly and was gone very quickly. My dad had gone, in a millisecond as I was on my way to him, I have never felt so sad in my whole life, I went to say goodbye to him and gave him a kiss on the forehead, it seemed like the most natural thing to do, we called each other twins as we shared the same birthday, and liked a lot of the same things, but as he lay there, peaceful and not in pain anymore, I felt sad that all the personality and humour was gone in a second from him, I missed him saying huh? And cheering on his favourite speed way racers, telling the ref he was a w****r and flirting with the nurses, it felt like the end of an era, and I told him goodbye and that I should of told him more I love him, it used to make me laugh when i told him and he'd say 'ahh getaway with you now' and thought of all the stressful hard times we had been through with mum, and also the stress of waiting for transport to take him back and forth to hospital and waiting around in hospitals to be seen, he didn't have to deal with any of that anymore, and was at peace, I'd never seen him look so at peace, but at the same time I'd of given anything to have him say hello or grab my shoulder and tell me a joke about one of the nurses having a big butt, or ask for a bag of sweets, but he was gone, and so i told him goodbye dad and sleep well, and that I'd miss him terribly. My first birthday without him was strange, he had begun to not enjoy birthdays and Christmas so i didn't feel sad but it was nice to have a birthday on the same day as him growing up, I now share my birthday with my partners dad, he's the day before me, so it's not all bad, but I did think of dad, but no sadness at all. It was hard to get out of the routine that i had with him, getting him ready for his hospital and clinic treatments, the good thing in all this is I can now look after myself, it's the best way to look at it. I am having trouble with thinking about death, it plagues me everyday, I'm terrified of death, speaking at both their cremations, more so at mum's, it has troubled me that she was lifeless there lying in a box and there was nothing I could do to make her better, Similar with dad, I know they'll never be able to tell me but i hope they like the services I put together, I could quite easily of been lying in a box myself after bring knocked over by that car, but I survived, I'm glad my dad didn't suffer and he wouldn't of known, but I often think did he know he didn't have long? A lot of clues were there, the pencil request, how he was telling me everything he could about his childhood over the last few weeks, and a few days before, he gave me a look which was like he looked.... it's hard to explain! If you've known someone all your life, or you have a strong connection with them, you can almost talk without talking to them with a expression, nothing ooky spooky, just like a connection, well, this look said, well, guess this is the end now, but I thought nah, he's just fed up, but I honestly think yup, he was trying to tell me without talking, I put it down to a twin thing!
I miss my dad terribly, I miss my mum and i miss mother, despite what she was like, sometimes what she did and said when she wasn't listening to the voices she was ok, but they don't have to suffer anymore, which is good, seeing people you love really sick is heart breaking.
I have lots of good memories and hopefully soon will get the counselling I need to be able to get on with life and not think about death, and will be able to think about death in a healthy way.
Should you need help with bereavement support, please contact hospice of the good Shepard in the UK.
Do contact myeloma UK for help and advice if you are a myeloma warrior, or care for someone with myeloma or have a friend or relative fighting it. It's becoming easier to diagnose which means it can be treated quicker, which can only be a good thing!
For mental health help and support, please contact mind, they are a great cause, I hope not to cause offence to anyone with mental health issues, sadly the stigma attached has not disappeared yet, but hopefully time will come when there isn't such a stigma attached.
Thankful for reading and hope this helps at least one person realise you aren't alone feeling like this x
I remember it all started when her father passed away, he was terribly abusive to her and none of her other siblings, apart from her oldest brother. Her dad had put her as his next of kin, mum announced his death in the Liverpool echo, and next thing we know, a load of unknown family crawled out of the wood works, there's nothing more disgusting than people fighting and arguing over a deceased persons belongings and money, and where he was going to be buried, going against her dad's wishes, he had a plot in liverpool, and this lead to her and her eldest brother fighting and arguing, that plus having to identify her dad's body seemed to send her round the bend, also sorting out all the arrangements and paperwork which comes when someone passes away, which I have now learnt is an uphill battle, that times 2 and it being my parents, it is enough to drive you berserk, but, for my mother, she found it difficult as she was burying her abuser, but, she treated the whole event as if he had never done any wrong and that he was the loveliest person you'd ever meet in your life, almost saint like, but from what I'd heard, it wasn't the case, far from it!
She come to learn, from the scum family that came out of nowhere that her mother had passed away too, and she was a nasty piece of work, a Catholic who, like the rest of that clan, could dish it out and you couldn't do anything right, but they were perfect, no matter what you did or said, you couldn't do right for doing wrong, they are all a complete mind fuck. Mums cousins weren't exactly lovely either, a clan of black and white witches, who believed they could cast spells and put curses on people, also they believed they were psychic, they were all very weird, and my dad and myself felt very out of place and decided very quickly we would have nothing to do with them, and let mum carry on if it made her happy, mumbling about a load of rubbish and giving readings, I've never seen and heard such utter garbage in my whole life, they also believed that they were related to the royal family, and owned a castle in Germany so we're royalty there too, I've never heard so much codswallop in my life and wanted the ground to swallow me up, I have had nothing to do with them since, any of mum's family, and have even come off Facebook as they've made fake accounts of me, and sent blackmailing messages to Me, and accused me of allsorts of rubbish, feel a lot happier without Facebook now and its mad to see how addicted people are to it, I get some strange looks when I tell people I'm not on it, like I'm some sort of abnormal alien, I've got better things to do with my life, I've lost a lot of friends since not being on it, and also a lot of people saying that I'd blocked them and having to explain that I'm not on there but I can be contacted in other ways, I haven't heard a word off them, despite my efforts to text or tweet or instagram message or email, nothing was the loud reply, so basically you don't exist if your not on Facebook, good riddance I say if that's how people want to be, shows how fickle they are, and I don't need people like that in my life if it's too much effort to get in contact with me any other way than Facebook messenger, what a rubbish society we've become if you can only communicate to people via an app and not face to face! Not naming names, I had people who would have great conversations on messenger, then in person, couldn't get away from me fast enough, there's definitely something very wrong with that, and it makes me feel like I'm worthless, but to be honest, let's think of it that they aren't true friends really, it says more about them than it does about me, I'm glad to leave the whole u ok hun, Inbox me community to themselves, total narcissitic, psychotic, crap bellends!
So, going back to the pinpoint of when my mother started to get ill, mentally, dad and me didn't have a clue what was happening to her, I'd only ever saw stuff like this on tv or in films, I managed to get her gp to see her and he diagnosed her with bipolar disorder and psychotic episodes. Throughout the years, they tried different medications, and it was difficult to get the meds right as she was good at hiding it, she was very sneaky about it, and so was sometimes getting the wrongs meds, she was also halving her meds, and sometimes on purpose not taking them, as the years went by, with dad bring sick with cancer and a variety of diseases and illnesses, he needed as much rest as possible, but that was damn near impossible, with mum's diseases and illnesses went from bad to worse, and dads bed being in the same room as mum, he was getting no peace, she would be crying, screaming, shouting and punching at things that weren't there, so I can hardly blame dad that he would go and sleep on his couch, and leave her to get on with her 'friends', she's would shout for me to get her things and to tell things that Weren't there to do one, I got no peace, neither did dad, and mum survived on very little sleep, dad and me got the rest that we needed when she was sectioned, I've lost count how many times she was sectioned!
One time, in the early hours of the morning, we heard the front door close, and we woke up to police officers knocking on the door, dad was down stairs in handcuffs, and they thought they were going to find me murdered in my room, I explained to the officers that my dad hadn't and had never raped me, I was completely safe and unhurt and demanded they remove the handcuffs from him. Mother had also accused dad of kicking a baby out of her, they had found her walking along the motorway, naked apart from a bath towel, carrying a load of hand towels saying that there was a dead baby in them, it was the most harrowing, and upsetting experience ever, and how could dad and me ever forgive her for putting us through this? She insisted it was her brother telling her to do and say these things and yet again she was sectioned. The hospital staff told us continually that she would get better, but I never again seen or knew my mum, she had since then been replaced by some woman who was apparently my mum who I had to look after, and make sure she washed and dressed and took care of herself, there was a thin line between caring too much and not doing enough, it was very stressful and hard and it has no doubt affected myself mentally, I now suffer from PTSD along with, in a non fashionable way, anxiety and depression, and after I was in a road traffic accident, I have a bunch of other ill health to deal with, so having an injured back, spine, and leg didn't mix well with caring for 2 parents with limited mobility who needed to use wheelchairs. It took a long battle to get help with caring for my mother, but eventually with the help of a local mp, I got the help I needed in lifting mum in and out of bed. I've found it hard to explain to people that I'm disabled, I look perfectly fine and healthy until people see me with my walking stick, and people stare which isn't very nice, I can tell they are making presumptions about me and I'd honestly wish people would ask rather than stare and presume!
So at the time of writing this blog, I'm still waiting for counselling for bereavement support, like anything these days, there's a list as long as your arm for counselling, so lots of other people needing it too, I don't know how many more tears I can cry, I thought I'd cried them all. When people ask if I'm ok, they can't really understand what's going on financially or mentally, they think because it's been a few months that it's all ok now, but truth is it seems to be getting harder. I want to tell them things but can't now because they are no longer around, I don't know the answers to some things people ask me, and its frustrating because I will never know. To me, my real mum passed away when she got mentally ill, the person she became wasn't my mum, I refer to her as my mother, nothing I could do was ever good enough for this one, after she lost her mobility she got even more vile, and when I was in the accident, I thought she couldn't get nastier, but she did! Then, if anyone came the house, carers for example, she would be telling them how great a carer I am and that I was a great daughter, then, as soon as they were gone, it was back to being nasty. It got to the point where I had to help her with personal toilet care. If you can imagine doing this with someone who is a dead weight, and having a back and spine that is badly damaged, you can begin to imagine how much of a struggle it was, it wasn't the nicest of tasks to carry out, but it was one of the only times she was ever pleasant to me during her final years, she would always thank me, I'm just glad that she wasn't horrible to me while doing that as I don't think I'd of coped well had that been the case, when the carers came to help, they thankfully relieved me of that duty, mum used to say they weren't as gentle as I was, I suppose they only have minutes to do everything, and as they were doing bits for my mother, there's someone else waiting for them to turn up. I had no other family close to help with caring for my parents, no holidays, no time off, it was a 24 hour round the clock job. It is a hard job but my parents told me they were both thankful I did it, rather than someone they didn't know coming in and out and they had someone they could trust with their bank details and finances, there's terrible stories in the media of carers taking people's cash, I don't know how they live with themselves. I feel sad my mum ended up in a home, she changed even more in that place, but it was for her own safety, because more often than not, dad would be receiving one of his many treatments in hospital, and I would be at an appointment so she would be left on her own, what if something happened when we weren't there? So we came to the decision that it was best for her to go in a council run care home, I went round a few to see them, and it all came down to man power, she specifically needed 3 nurses to be able to lift her, and nowhere had enough staff to patient ratio to be able to provide that amount of care, we found a home on the outskirts of town, and it seemed lovely, I honestly only went to see her once, as she was shouting at me that I'd put her in a home and made me feel really bad, I was told to go see her by a social worker, because she was under mental health services, she had a social worker, I told him to mind his own business as she had caused so much psychological damage over the years, but he insisted dad and me should go see her as it was obvious to them that she only had a few weeks, days hours to live. Dad and me expected her to be sitting up and talking to voices in her head and to be her usual chunky self and be eating them out of house and home but we were shocked to see what she was like. As we entered the room, the radio was on, and there was what looked like a very old lady in maybe her 90's, thin and body lying helpless on the bed, almost skeletal. I don't know what the hell had happened for her to get like that but something wasn't right, I would probably be getting the blame for not going to see her, but anyone who would of spent 24 hours watching the way she treated and talked to me and wanted to remain sane and not send themselves crazy would of done the same, I had a full time job helping dad to the best of my ability while trying to look after myself struggling with my own disability, I had an op on my back and have to have another next year, a lot of damage has been done to my body from pushing wheelchairs, and also from a car knocking me speeding, so my priorities lay with looking after my physical and mental health so i didn't end up in a wheelchair myself, I was already at that stage needing walking aids to get around.
So, the shock of seeing my mother looking like a frail 90 year old lady had stayed with me, my dad looked so sad and afterwards I cuddled him while he cried after seeing her like that, he died 5 months after she passed away, his cancer (myeloma) came back, it had completely made his kidneys die already, and had had a course of bortezomilb which is a highly effect chemo for treating myeloma. He had a whole year where it didn't come back, myeloma at the time of writing this blog is treatable but not curable, I hope for a cure for it, it kind of goes into hiding in the bone marrow in the big bones in the body, it's not in everyone, just in people with myeloma who have this para protein, it looks like squished blackberries under a microscope, anyhow, it came back a year later, and his specialist doctor kept a close eye on it and he was admitted to hospital after his legs started leaking, I spotted it and dressed them and informed his Dialisys nurses who seen his legs swell significantly during his treatment one day, he had this 3 times a week, so they kept a close eye on things.
He was in hospital for his 3 final weeks, and he wanted to go home any watch the football and have a ciggy, yup he smoked even though he had the beginnings of emphysema, and had cancer, he had the tools to quit smoking, but none of the will power, he'd smoked since he was 9 so it wouldn't of been an easy habit to give up. I didn't expect that to be his last few weeks, several times over the years I was told by nurses and doctors to get ready to say goodbye and I had sat by his side in intensive care holding his hand but nothing prepared me for it to actually happen, as all the times I had been told to expect it, the next day he'd be sitting up and eating a butty or jelly and ice cream, which he would request, it being his favourite. But this time, there was no fore warning, I'd been to see him and then had a phone call as he was getting his Dialisys to bring in a pencil when I came to see him the next day, he sounded like he was slurring on the phone, but I put it down to that he was having his treatment and was tired. He phoned me later that night not to forget that pencil, he sounded very serious and sad with that request. I never found out why he wanted that pencil as I was on my way to see him and got a call off the nurses in his ward to come urgently. He had collapsed very quickly and was gone very quickly. My dad had gone, in a millisecond as I was on my way to him, I have never felt so sad in my whole life, I went to say goodbye to him and gave him a kiss on the forehead, it seemed like the most natural thing to do, we called each other twins as we shared the same birthday, and liked a lot of the same things, but as he lay there, peaceful and not in pain anymore, I felt sad that all the personality and humour was gone in a second from him, I missed him saying huh? And cheering on his favourite speed way racers, telling the ref he was a w****r and flirting with the nurses, it felt like the end of an era, and I told him goodbye and that I should of told him more I love him, it used to make me laugh when i told him and he'd say 'ahh getaway with you now' and thought of all the stressful hard times we had been through with mum, and also the stress of waiting for transport to take him back and forth to hospital and waiting around in hospitals to be seen, he didn't have to deal with any of that anymore, and was at peace, I'd never seen him look so at peace, but at the same time I'd of given anything to have him say hello or grab my shoulder and tell me a joke about one of the nurses having a big butt, or ask for a bag of sweets, but he was gone, and so i told him goodbye dad and sleep well, and that I'd miss him terribly. My first birthday without him was strange, he had begun to not enjoy birthdays and Christmas so i didn't feel sad but it was nice to have a birthday on the same day as him growing up, I now share my birthday with my partners dad, he's the day before me, so it's not all bad, but I did think of dad, but no sadness at all. It was hard to get out of the routine that i had with him, getting him ready for his hospital and clinic treatments, the good thing in all this is I can now look after myself, it's the best way to look at it. I am having trouble with thinking about death, it plagues me everyday, I'm terrified of death, speaking at both their cremations, more so at mum's, it has troubled me that she was lifeless there lying in a box and there was nothing I could do to make her better, Similar with dad, I know they'll never be able to tell me but i hope they like the services I put together, I could quite easily of been lying in a box myself after bring knocked over by that car, but I survived, I'm glad my dad didn't suffer and he wouldn't of known, but I often think did he know he didn't have long? A lot of clues were there, the pencil request, how he was telling me everything he could about his childhood over the last few weeks, and a few days before, he gave me a look which was like he looked.... it's hard to explain! If you've known someone all your life, or you have a strong connection with them, you can almost talk without talking to them with a expression, nothing ooky spooky, just like a connection, well, this look said, well, guess this is the end now, but I thought nah, he's just fed up, but I honestly think yup, he was trying to tell me without talking, I put it down to a twin thing!
I miss my dad terribly, I miss my mum and i miss mother, despite what she was like, sometimes what she did and said when she wasn't listening to the voices she was ok, but they don't have to suffer anymore, which is good, seeing people you love really sick is heart breaking.
I have lots of good memories and hopefully soon will get the counselling I need to be able to get on with life and not think about death, and will be able to think about death in a healthy way.
Should you need help with bereavement support, please contact hospice of the good Shepard in the UK.
Do contact myeloma UK for help and advice if you are a myeloma warrior, or care for someone with myeloma or have a friend or relative fighting it. It's becoming easier to diagnose which means it can be treated quicker, which can only be a good thing!
For mental health help and support, please contact mind, they are a great cause, I hope not to cause offence to anyone with mental health issues, sadly the stigma attached has not disappeared yet, but hopefully time will come when there isn't such a stigma attached.
Thankful for reading and hope this helps at least one person realise you aren't alone feeling like this x
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