One more Update, for now… hopefully a little lighter to read than recently.

Just a quick update to let you all know I’m actually doing kind of okay. I am currently residing in a hospital bed receiving chemotherapy and radiotherapy for the cancers that have assaulted my body. I have lung cancer, which has spread to my spinal column and caused a bone compression that was trying to take my back out of the picture. Radiotherapy took care of that one thankfully. I am up and walking about again.

I have had full and complete MRI scans of my entire short little body, I have cancer appearing in a number of spots mainly lung and spinal, but unfortunately there has been a small appearance in the brain. My left side of my body is quite weak and I am not able to concentrate for very long. So, what I have decided to do, is fight when I can fight, sleep when I can’t fight, write when I’m able and mosaic when I can’t write.

I reckon, between treatments and my plan I shall move forward in the right direction every day.

The chemo treatment, the other day was my very first and it has left me foggy brained, exhausted and feeling like I might never think clearly again, I will of course, but the meds added to the mix make your brain think weird stuff.

I’m writing all this down, sans brain fog, because my short term memory is struggling with even basics like remembering names, days, times etc and that’s making me frustrated.

I am going to try and open up a new post, naughty post, a distraction from all my sadness and hurt and fear and pain. Worrying about it is not changing it, not sending it away, nothing will change the abyss of my loss, I shall forever navigate that space and find him. That will always be my intention.

Give me time to write and I’m sure I will find a little story to titillate you. Or, you could help by sending me a prompt, an idea for a story. Just a scenario you would like to read. It’s all good, I need direction right now, so little prompts would be fun.🤩🤩🥳

But, in the meantime, if I can find a fun little way to play, then play I shall. One thing I have learned is this, life does not stand still when we get sick, it speeds up, alarmingly fast and it becomes a huge race. I intend to smile and laugh even through the pain, because that is what my boy and I did all his life. Now is not the time to be a dark serious type, it is time for light and a bit of sunshine to help me through.


As most of you will be now aware, I lost my son on 10th December 2022 to secondary liver cancer. His battle with this terrible disease was short and thankfully almost pain free due to timely medication. He never really stood a chance because his cancer went undetected from the 4th August 2022 when he was first admitted to hospital with a huge infection that presented as abscesses and was everywhere, in his stomach, his liver, his kidney, caused problems with his lungs and his heart in the later stages.
He fought off the infection and it took him 4 months to do so, but he got his CRP rate (infection rate) down from 367 to 25 during that 4 months. We had a whole 24 hours of celebration over his ‘win’, especially as his consultant was shocked that he had managed to accomplish this massive feat and against all odds.

To be completely thorough at that time, his consultant ordered one last CT scan to determine that all of the abscesses had indeed gone and he was on the mend. The results came back 24 hours later and that was when his diagnosis of secondary cancer was revealed. A biopsy quickly followed, the results of the lung drain carried out just one week before came back before the biopsy results were in. The lung fluid had revealed lymphatic cells in the lung.
He had only been holding back the cancer with the mass infection which was in effect preventing the cancer from spreading. Curing the infection created the perfect conditions for the cancer to travel around his body unchecked. By the time the biopsy results had come back, he was already in the end of life stages of cancer, 5 and a half days later he died.

That was two months and 10 days ago exactly on 20th February 23.

On the 31st October 2022 I noticed a small lump that had appeared on my left side just under the rib cage on my back. I was shocked to find it, it was hard and round and was roughly the size of a penny. I went to the doctors on the 1st November 2022 and was told by the Nurse Practitioner (better qualified than a nurse, less qualified than a GP) that I had a harmless lipoma that was annoying but ultimately nothing to worry about. He told me to keep a check on it from time to time to make sure it was remaining around the same size and he sent me home with a nothing to worry about diagnosis.
Now, from the first November to the 22nd of December (the day after Dan’s funeral) I never paid much attention to that lipoma, I was watching my son die and my world had shrunk to just him and him alone.
It wasn’t until the day after Dan’s funeral (22nd December 22) that I realised I was experiencing a lot of back pain especially in the left side of my body, I checked the lump and was shocked to find it was now roughly the size of a small egg. I made an immediate appointment for the following day with the proper GP, not the pretend one. I appreciate the nurse practitioners are helpful on a large scale in a Doctors surgery for any normal sort of ailment, but lumps and bumps in my opinion should always be checked out by a properly trained GP. I wish I’d had that thought at the time but my mind was consumed with the unfolding tragedy of my lovely son’s rapidly declining health. I accepted the first feasible diagnosis and went on my merry way.

I saw my GP about the lump on the 23rd of December and he immediately raised an appointment for the 19th January for an X ray appointment at my local hospital at 9am in the morning.

My GP phoned me with those results before I had even left the hospital and he had organised an MRI scan at a hospital that is roughly 50 miles away from me that would be carried out on 30th January at 9.10am.
I then received a further appointment for the 31st January at the same hospital in Oswestry for the results of the MRI scan with the Professor who would be overlooking my case and working on the diagnosis. Skip to the 31st of January, I met with the Professor and he was unsettled with the findings of the MRI scan, he had ordered a biopsy to be carried out that same afternoon. It was no longer taking weeks between appointments, it was now taking hours. I was very alarmed at the swift change of pace, but the Professor refused to be drawn on any further details until he had the facts in front of him.

Followed was the longest 10 days of my life since my son’s diagnosis and subsequent death from cancer. The range of emotions and trauma I went through, from hoping it was cancer because at least I wouldn’t have to continue through my life without my son for much longer to knowing deep in my bones that I have to beat this because cancer had already robbed me of my boy, it was not taking me down too. I have too much to accomplish both in his name and my own before I get off this mortal coil.

My whole life had already crumbled and become unrecognisable in any real way, but now I was stood in the middle of a complete wasteland of shattered dreams, hopes and wishes, that was all that was left of my previous life. I felt like I was frozen in time and I might never recover from it all. I determined to push my way through regardless, I had no other choices.

On Tuesday 14th February I received the news from the biopsy. I thought I was prepared for everything and anything. Still heavily focused on my intense grief over losing my son to this dreadful disease, I think I may have pushed away the reality that it could happen to me to.

It has, I have adenocarcinoma, originating from the right lung which is the primary source. The lump on my back is actually a secondary cancer that has spread from the primary source.
When I heard I have lung cancer, I immediately began to blame myself obviously thinking it must be smoking related and I had done this to myself. I haven’t and it isn’t smoking related in any way at all. Apparently, it is more likely to have been triggered by the intense trauma of my son’s final months that culminated in his untimely death. When I was originally told the news I immediately began to feel guilty because I was being told that there was a large possibility of receiving controlling treatment to prolong my life with a good quality of life and I could survive even while living with cancer. My guilt stemmed from the fact that I was being given all of the options that had been taken away from my son. Why did I get to survive and not him.
It has complicated my thinking enormously over the past week but I am coming to terms with the fact that regardless of what I would wish for, the reality will always remain the same. My cancer has hopefully been found in time to be able to effectively treat it. My son’s was only found at the very end with no time left to do anything except make him comfortable in his final days.

Regardless, the upshot is, I have a chance to have this treated with targeted treatment radiotherapy to shrink the tumours which should reduce the amount of pain I’m in and allow me to have quality of life between treatments. If the treatments work and I respond well to them then there is no reason why I couldn’t live for another 10 – 15 years which I will happily take. I have things I wish to accomplish in both our names and for that I need time.

It is, as they say, in the lap of the gods now, how my body responds, how quickly they can get the cancer under control and how long they can keep it at bay. They cannot cure secondary cancer, they can only control it’s progression. I am officially on borrowed time and the last leg of my life journey, come what may.

My son never had the opportunity to have treatment because they couldn’t find the primary source of his cancer and to make matters worse the secondary had gone straight to the liver which processes a third of our blood vessels every single day. He never stood a chance. It is a blessing of sorts that he went so quickly and without pain or the realisation he was dying before he actually died. It is no small blessing that he is not here to witness me being this poorly with a very uncertain future. He would have been devastated by this news and in his weakened state of health it would have created an impossible situation for us both.

What I do know and believe deep in my heart is that he would have wanted me to fight this, take every treatment offered and live my life to its fullest before conceding defeat at the very end. We do all have that one guarantee in life and that is we are all eventually going to die. How and when isn’t normally known to us and like my son, when it does become apparent, if we are lucky we don’t have time to dwell on the horridness of it all before we are no longer here.
I know what I have is not curable, I know there is a limit to how much the health service can do, I know there is some kind of open ended time limit as to how long I have, but in the meantime, I will continue to work through my grief process and come to terms with my deep and dreadful loss of my boy, but I will begin to bring my life back out into the sunshine and take each day as it comes with hopefully as many smiles as there will be tears.

I owe us both that much.

Grief Journal


We should be allowed one more moment with them, once a loved one has died I mean. We should be able to just pull back the blind and see them one last time before they go forever, just so we know they are okay now.

What would I give for that one last moment? I would give my life for that. I can’t help thinking there is nothing left to do here now. I’ve lost my boy and in doing so I am lost myself. I try to lift my head up and look out for those people who need me to see them, to show them I am going to get through these dreadful days of blackness, but I can’t help wondering, what’s the point?

I am sick at the moment, perhaps that isn’t helping. I can’t physically do much and so my mind has time to torture me with images no mother should ever have to witness. I feel helpless.

I went for counselling, I couldn’t listen to the counsellor who kept trying to explain my thought processes to me. For goodness sake, I know my own thought processes, they are all lined thickly with pain. I understand why these thoughts are torturing me, fragments spinning in and out of my conscious thoughts, I can’t put them all together cohesively, that would signal the end for me. Fragments it is. My brain can’t hold onto them for too long, I can let them spin off. But they dig in deep as they pass by and they draw more emotional blood on their way to wherever they have gone to hide. I know they will be back though, because that is the only reality there is right now. The pain will come back over and over again and I will drop and scream in despair because I don’t understand why it was my son that had to go.

I just don’t understand how I got here from there and why it all went the way it did and how it happened so quickly, too quickly for me to catch my breath and catch him before he shattered. We always had before. I don’t understand why this time it had to be the end.

It shouldn’t be the end. I want to draw the blind back one last time just to see him before he disappears from view forever. I just want to see that he really is okay now.

Grief Journal.


As I sit writing this I realise I am forever intrinsically broken by the very recent passing of my son. I view the world in a very different, more abject way than before. I don’t care very much at all about anything. I know that a huge part of these feelings are grief driven and some of it will pass eventually. Most of this post won’t make very much sense and probably won’t be cohesive or relevent. That doesn’t matter, what matters is that I say words to my journal as I feel the emotions that drive them.

My days are currently taken up with sorting out the services that were connected to my son’s life. The idiocy of bureaucratic officials who must tick every box on the page before they deem that contract ended. My answer to all of them currently is simple, death is final and cancels all contracts completely and without question. I then ask them to put themselves in my shoes and ask themselves how much they would be prepared to put up with if it was their child’s life they were closing down.

Yes they have been ‘sympathetic’, they have chuntered out the correct words for the grief stricken individual they are dealing with. No it does not help one iota that they had the correct words to say in that first instance because then they ask all the stupid questions on their list and I am left wanting to scream at them. It’s not as if there is even any money to be settled either way. I don’t deal well with unnecessary bureaucracy under normal circumstances. Dealing with it right now has left me raw and angry and out of sorts with the world because I don’t care if they never get all their boxes ticked. I don’t give a damn that their computer won’t accept the data because there may be a missing piece of information. I don’t give a fuck if it takes them the rest of their working lives to sort out whatever problems they have with my closing down of accounts that are no longer required.

Why is it so difficult? Well, apparently it’s because my son was not listed as having cancer on their records and that is why he died. He was also very young, just 32. He is listed as having physical disabilities, epilepsy and a host of ‘other’ conditions, but cancer wasn’t one of them. The computer didn’t like the information. It didn’t marry up with their previous records and kept throwing up a glitch and bouncing the hapless idiot back to the previous question. Please confirm cause of death.

I hung up on her. Now, to put this into some perspective, this whole conversation was so that I could have some emergency call equipment collected by them as it is no longer required. Why did they even need to know cause of death? Well, because it was a question on their list and the answer provided was inconsistent with their previously logged information regarding Dan. She even went so far as to say perhaps I should have called them to update them on his condition? Well fucking hell, excuse me for not thinking of updating their system when we had just been told my boy was going to die very soon.
You see, in reality, this was just one of those stupid unthinking moments when a person hasn’t connected their brain to their mouth before speaking. It was a human glitch, and we are all capable of them. Some more than others, but no one is perfect. Perhaps extra training could have prevented it. Perhaps, whoever designed the questions should have taken an aptitude test before being given the job of designing such intrusive questions when a person dies all in order to close down a service that is no longer required.
What this did to me was simple. It triggered three days of harrowing memories of the final days of my son’s death. In the fullness of time I will come to realise I was fortunate enough to have been able to spend almost every single day of my son’s life with him from the moment he was born to the very last breath that he took.

Right now, it kills me that I witnessed my son dying and I could do absolutely nothing to prevent it. All I could do was be there for him right to the very last breath so he knew he was not alone and there was nothing to be afraid of.
But now, I am afraid, I am alone and I am bereft. I have never been so completely lost.

Cancer stole my son and robbed us both of the rest of his life.

I am bitter and angry with the world right now, I have a huge hole ripped in the core of me and I can’t balance on the edges most days and I fall in. The anger at these people actually helps in some odd way because it clears the brain fog, even if it is only temporary. Anger is fast becoming my best friend. It’s the only way I can still feel real.

I miss my boy, I miss his laughter, I miss his sarcasm, his quick quips but more than anything I miss his quiet gentle presence in my life every single minute of every single day and nothing will ever make a damn difference to the size of the hole he left behind.

I know this is grief, I understand the pain I feel is ‘normal’ in these circumstances but there is no normal anymore. Everything is fucked. I don’t care. I just want to hear him speak one more time and I want the world to leave me alone now.

That’s My Boy

I could talk about Dan from several places in his life and all of them would be filled with passion and a single minded determination to succeed. His passion for his beloved sport, Wheelchair Basketball. The pinnacle of his time in the game as a Welsh International player. His happiest time in the game when he played for the Northwest Juniors, and then later when he played for Vikings. He was a team player and proud. If you had been able to ask him today what his proudest moment in the game was, he would tell you, it was winning his first gold medal with the Under 15’s Northwest Junior squad. He told me that day, he still hadn’t reached his limit, the sky was his limit, and he was going for it. He pushed that envelope as far as Welsh International Squad and he was so damn proud to push out in his country’s colours.

When he was a small child, he pushed boundaries, changed perceptions, pushed to do things he wasn’t supposed to be able to do, he learned how to tap dance, sitting down of course, but he learnt anyway. He was fascinated with Michael Flatley and how fast he could dance! He ‘danced’ on stage, sitting down, with his dancing school friends and he loved every second of it. In his head he was flying across that stage with feet of flames! He was giving Michael Flatley a good run for his money!  From that summer show, came a little acting part to play Tiny Tim in the Christmas carol. He upset the fluffy cloud brigade on the front row, who noted a continuity issue with his costume and were quick to point it out. I was politely informed that Tiny Tim only had one crutch and one leg brace and the little boy on the stage was over hamming his part by using two crutches and two leg braces.
I told the woman she had made my day simply because she had looked past the disability and only seen the child. Once she realised her mistake and that Dan was in fact disabled, she was mortified.

From that came the nomination for the Millennium Children of Courage Award, the dunking of his biscuit in the then Prime Minister, Tony Blair’s cup of tea. How he reduced Vinnie Jones to tears, frightened the living day lights out of the Duchess of Kent, upset Joan Collins because he thought she was old and didn’t mind sharing that fact, how he had a deep and meaningful conversation with Chris Eubank about the difference and similarities between Chess and Boxing. How he changed perceptions of the celebrities around him of what it was to be human, regardless of ability or lack thereof. All of this before he was 11.

All those events shaped my son, all those times filled his life up and as each chapter ended, he would start a new one with equal enthusiasm and drive.

His life was littered with ill health, long spells of recovery, even longer spells of hospital stays but through it all it was just something he needed to get over, a challenge for him to overcome.

I could talk for days about individual moments, funny, hilarious moments during his years at basketball, his years as a small child, his sack race win at the age of 5. (We tied the sack around his waist, and he ran with his crutches till he won). I could talk for days about my boy.

All those high times came to an end when his body began to fail him, first with epilepsy, then with kidney issues, then other aspects of his health took a turn and, in the end, the only thing that would save him was a urostomy.

That signalled the end of his time in basketball, he hung up his wheels and said 15 years playing the sport you love is fantastic but now it was hurting him. He retired. His urostomy took place, and not a moment too soon, his body was packing up inside and he was in dire straits with his kidneys.

That operation turned his life around because that was the day I told him, all he had to do was wake up after the surgery and he could have his black Labrador. That gave him something to focus on, his biggest wish for years since Mr Stinky had died was to have a black lab, train it to be his service dog and just spend all his time with said pooch. He trained Ben himself; he took him to Dog training lessons and when they couldn’t take him any further, he learnt the rest of it and trained Ben himself. He became so knowledgeable about dogs; he was like an encyclopaedia of every dog breed!

That is the man I want to talk about, the quiet, funny, sarcastic but very contented man who went for a two mile push every day with his dog down at Talacre. So many people knew him and Ben, he touched so many lives, he made so many people smile. Ben lit up all the dark corners of Dan’s life and completed him. He was utterly devoted to his best friend and side kick. Ben never let him down once, and he never did Ben wrong, not once. It was a love fest.

His proudest moment in recent years was when he got his chest tattoo of his beloved pooch Ben. He loved his tattoos, he loved classic cars, American baseball, (although when I told him it was just British rounders bigged up, he was less than impressed with me), he loved snooker and tennis and he loved Strictly, just so he could argue with me over who was the best dancer. It was a bad day at black rock for him when Bill Bailey won! He learned new skills all the time, he learned how to tie rope knots, intricate rope knots, he learned about sword making, he loved cooking and as well as all that he had an abiding respect for anyone who served in the forces for their country. He was patriotic to the core.

Ben brought about a peacefulness and contentedness in Dan I had never seen before, and it was wonderful. Dan became a very proficient photographer of wildlife and nature, and his new goal was to make a book of all his photographs. He never got that opportunity, but I will fulfil his final wish and complete that last journey on his behalf.

My boy made me proud; he frustrated the hell out of me sometimes, but most of the time he was so funny and kind and so genuinely honest and open that I often sat and wondered how I managed to make such a lovely, perfectly imperfect person.

We were a team me and my boy, we stuck together and fought our way through all the rough times, and we did happy dances during the good times. We travelled, we laughed, we swore (me more than him, but I taught him some new words every day which he happily made use of) we rarely cried, we always challenged ourselves to go as far and as high as we could, and we supported each other in our individual endeavours. He was my biggest champion and supporter, and he would tell everyone about his crazy mum.

I asked him once, if he could change anything about himself at all, what would it be? His answer was simple. He said he would change his disability and he would choose to be a double leg amputee because his own legs were useless anyway and he had never really had anything to do with them. I asked him why he had chosen to be an amputee, he said, because my insides would be working, and it would just be my legs that weren’t.  I asked him why he hadn’t chosen to be able bodied, and he replied, because I’m not, I wouldn’t know how to be that person, I wouldn’t have had the life I’ve had, done the things I’ve done, I would have just been a normal joe and done normal stuff and I wouldn’t have been different. I like being different.

He was different, he was kind, and supportive, sarcastic, and sharp witted, gentle, and caring and he never hurt a single person his whole life. He had a life well lived in his short 32 years, but above all that he was Dan, no apologies, no regrets. He was my beautiful son of whom I am most proud. The boy with the smile in his eyes.

That’s my boy.

Final Update

On the 29th March at 10.29am 1990 I gave birth to the most beautiful perfectly imperfect baby boy and I rejoiced. Yesterday at 11.45am 10th December 2022, my beautiful son passed away. His final battle with illness and then secondary cancer was just too much for his tired body. He was 32 years of age.I brought my son in to this world and witnessed his first sweet breath, and I have spent every single day of his 32 years with him. Yesterday he made one last herculean effort to look straight into my eyes as he took his final breath. We were listening to his favourite Pink Floyd song and I know he could hear it. His breathing eased and he became calm. I carried my son for the full circle of his life and am profoundly grateful for that realisation and opportunity to share something so precious with him.

I am truly lost, my heart is shattered into a million pieces for the beautiful son I had to let go of. I weep sadly for the life he will never get to live. I rejoice at the 32 years of a life so well lived, so packed full of challenges and successes, massive highs, terrible lows, enormous humour in the face of adversity, and I take solace in knowing that there will never ever be another person on the planet like him.

He has touched so many hearts and minds in his short life, he has changed perceptions about disability boundaries, he has educated and he has reached down and held hands to raise others who needed his assistance to get where he had climbed.

I am the most proud, most heartbroken warrior mama in the world but I know my baby is no longer suffering and for that I am profoundly grateful.

My boy and his best friend in happier healthier times.

Rest easy son, the fight is over you won your freedom to fly as high as the sky.

Currently Dealing with … Update #5

I found out yesterday afternoon that my son has secondary liver cancer.
The Doctors believe it started either in the bowel or bladder and has travelled to his liver. They have informed us that they cannot ‘cure’ secondary cancers, but they can control it with medication.
We have no definitive diagnosis or prognosis at this point as many tests still need to be run in order to find the right treatment to target his cancer.

They are hoping for more answers by next Friday.

He is strong and resilient and we will fight this with everything we have in us. He is my life and my colour and anything other than recovery is out of the question and unacceptable.

That’s all I have right now.

Stay well and be kind to yourselves.

Currently dealing with… Update 4

Hey people,

I hope life is treating you better than you hoped for and never worse than you could have imagined.

I can’t say that for my own life right now, my son is now on his 86th day in hospital.

They have found the real source of the infection, it is the liver, it is loaded with roughly 23 to 26 abscesses of all varying sizes, this has caused his lung to fill with fluid and so his breathing is laboured. He has a ‘tachi’ heart rate pretty much all the time, his BP is one day on the floor, the next day through the roof. His temperature ranges from 35.9 to 40.4 at any given time. In short he is in a world of trouble.

He has had his stomach drained of infection, he is currently having his lung drained of fluid, so far 3100ml has been drained off his lung so far, the drain is being left in over the weekend in case the lung starts filling up again. Thursday evening he had the MET team, (medical emergency team) called to him because his stats were all over the place and a crash team were on stand by.

He is stable again now, and it has been decided that he needs to be transferred to a different, better, hospital that specialises in hepatobiliary. They also specialise in nephrology and respiratory too. So they can cover all aspects of his conditions.

I have been informed that the reason his lung and liver is so badly compromised now is because the urology consultant and his team at our local hospital have delayed positive treatment of the lung and liver while they debated the need for a nephrostomy on a dead kidney even after being informed back at the beginning of September, by his own Urology Consultant from a different hospital, that it was not a viable option. This has taken them roughly the entire 86 days. They then decided it would be pointless. I am formally taking them on when my son is well again, and he will be well again. It will just take time and a lot of positive mental attitude from us both. He now has the right people surrounding him and they will help him. They have to.

I have nothing else left to say really, I just wanted to bring you up to speed so you know where he’s at.

Currently dealing with… Update 3

Hey Peoples,

I hope life is treating you kindly, I sincerely hope that your friends are treating you kindly too.

Weird thing to say right?

Well, under normal circumstances, (whatever they are), I would think it was weird but after a really dreadful visit from a long time friend on Thursday just gone I am beginning to wonder if I ever knew her at all.

I haven’t seen this particular friend more than 3 times since 2020 lockdown happened and I had my attempt at dying from sepsis thing at the beginning of the lockdown. She lives in the same village as me, although we are far enough apart we can go weeks without bumping into each other. We have been friends for 25 years. Or at least I thought we were…

Anyway, she turned up on Thursday morning and immediately she sat down, she rushed to tell me all about her life, how she is on a short waiting list to have her hips replaced, wondered why I hadn’t had the same treatment for my knees? Oh I see, just a little jibe there, just a tad too gloating for me, she is pointing out that she is worse off than me. Okay, who the fuck cares? Let’s face it if things come down to who is suffering more, I would rather be glad that it wasn’t me. I sure as hell wouldn’t want to rub my friend’s nose in the fact I was getting seen much more quickly than they are, meh, It is what it is. I honestly couldn’t give a flying fuck right now…

So after her 15 minute download of every single comma, full stop, exclamation mark of the entire conversation with her hip specialist she finally got around to asking how my son was. As you know he is still in hospital and actually on Thursday last week he had taken a downward turn and was not doing well at all. Unfortunately for him, he has no sensation, so his body is doing one thing, as in behaving really fucking badly right now and his brain is doing something entirely different and telling him he is absolutely fine and he should be at home getting on with his life and picking things back up again.

I said this to her, I said, he just wants to come home now, he’s had enough of being in hospital just sitting in a hospital bed playing mindless games on his iPad and avoiding talking to cranky old geezers in the beds facing him.

Her response floored me, and I quote, ‘He needs to get over himself, he’s not doing anything different to what he does at home, so what difference does it make where he is?’

Wow! I never realised how little she understood or knew about my son, whom she has known for 25 years. How she has the nerve to sit in judgement of his lifestyle is beyond me, she has never worked a day in the last 25 years nor has her husband. They have sat at home and played computer games and been armchair twitter trolls who mud sling at anyone who is different to them, as in anyone who happens to be religious. That should have told me I suppose, but I have a disconnect regarding their online activity as I don’t follow either of them, I just get told when she thinks she has said something cutting and oh so clever.

How did she miss the fact that he is out of the house daily, going on a two mile push in his wheelchair so he can give his dog a good run every day? How did she miss the thousands of photographs he has taken and has shown her when she used to call round prior to 2020? How did she miss the conversations he’s had where he’s said he wants to create a book of his photographs showing life in pictures from the vantage point of a wheelchair user.
How has she forgotten that he played wheelchair basketball for 15 years culminating in a victorious International career playing for his country? She was sat facing his huge cabinet of sporting trophies and accolades ffs. How is it possible that she could think he sits around all day doing fuck all with his life so it doesn’t matter where he does it? Either at home or in hospital attached to drips and machines?

I am now sitting facing this woman wondering who the fuck I have called friend for a quarter of a century. Her dismissive and derisive attitude towards my son has been flying very low beneath the radar. I never picked up on it before. I am absolutely furious, how dare she sit in judgement of my son? Jesus, he’s currently in hospital fighting for his life, his infections were raging on Thursday, they are stable again now (Tuesday) but it has been a hell of a long 6 days from where he was to where he is right now, and there is no guarantee he will stay stable at this point.

I asked her to leave. She doesn’t understand why I am upset with her and told me I wasn’t thinking clearly because I was worrying about him. She said she would come back in a few days to discuss things calmly with me.

Good luck with that… I am currently not taking prisoners, I am only leaving dead bodies in my wake.

Currently dealing with… Part 2

Hey Peoples, me again.

I’m tired, cranky and in need of some kind of magical intervention in my life right now. If it can go wrong, it is doing and with alarming regularity.

I have a question, why after six weeks of my son being in hospital does anyone think it might be, that I still have to explain to the nursing staff on his ward, the reason WHY a pressure sore on my son’s right buttock needs the specialist HEALING CREAM and a DRESSING?? And also, WHY it is dangerous to leave it both uncovered and untended.

So, he has been in hospital 6 weeks now, going into his 7th and every single day has been one problem after another, generally created by either a lack of understanding of his core disability (Spina Bifida) or a lack of understanding of how to dress pressure sores correctly, and how to change a stoma bag.
Now, Okay, I know the stoma bag and pressure sore thing is something that a district nurse would be better placed to deal with, but that’s not on the cards as he is in hospital with hospital nurses looking after him. I am fairly sure that they all went to the same nursing colleges though. Maybe I’m wrong.

I would expect them to have at least a rudimentary understanding of how it all works and WHY it needs to be done on a regular 24 hour basis. I thought that would be nursing 101.

Anyway, that aside, (but only slightly as it still features) he has now gotten over Covid and has the all clear since Tuesday the 13th. So imagine my absolute horror and frustration when I received a phone call from the ward staff nurse on Wednesday the 14th telling me that he has tested positive for MRSA a hospital superbug. I am beside myself, because my understanding of this particular hospital bug is that if the ward is kept properly cleaned at all times, the bug can’t thrive, let alone infect already sick patients.

They tempered their news with this, ‘please don’t be too worried, there is a very effective dual treatment that works to kill this bug and it is no longer considered to be the killer bug that it was originally.’ OH well, that’s alright then!!! Isn’t it??? NO!!! It bloody isn’t!

He is currently sitting on an open wound, the MRSA is around the groin area, it is not a great journey for the MRSA to travel to the open wound on his backside and infect it. We are then dealing with a whole different level of infection. Please also remember, he is currently in hospital because he has a massive septic infection in his hips, liver, right kidney and stomach, apparently caused by his right kidney leaching infection into his system slowly over time. It has flown under the radar of detection via the usual routes of blood tests and urine samples. It only showed up on an MRI scan and everyone was duly shocked. They are still trying to identify the infection so that they can match the antibiotics to it to clear it up properly. we are 6 weeks in.

Now he has another infection, this time picked up in hospital. The thing I don’t understand, is MRSA is apparently a one to one contact bug, it’s passed through human contact. He has not been out of bed in 6 weeks, only nursing staff have touched him and the radiology staff. That tells me one of them has passed this bug onto him. How on earth are we supposed to have any kind of faith in these people to fix him if all they keep doing is give him more infections?

Okay, so back to the open wound, if the nurse did as she was supposed to and dressed that sore on his behind with the specialist healing cream and the correct wound dressing every 24 hours, then I would not be concerned about the MRSA travelling to that area as it would be sealed off. Currently he is sitting on an inco sheet which is rough on his skin and that is actually breaking down the pressure sore further so I am as mad as hell that I am still having to spell out the very crucial need to keep that sore tended and dressed properly.

Now, cast your mind back to that ‘please don’t worry’ statement. The treatment for the MRSA is a dual treatment. He contracted the bug on wednesday 14th September, and up until yesterday, Friday 16th he was only applying a cream to the inside of his nostrils 3 times a day. A full medicated body wash was supposed to be being applied once a day along with the application of the ointment to his nose. When do you suppose they did the first body wash?

Oh , that would be Friday afternoon after I had raised the roof because it had been sat on his cabinet for two days still in the pharmacy bag, unopened and ignored since it had arrived on Wednesday.

I despair. I truly do despair.

He finally has the stomach drain fitted to remove as much of the infection from his stomach as they can, only a week after it was supposed to have been done, and only because on the 13th I came away from a respite break and drove over to the hospital to find out what the hell was going on. He had the drain on the 15th. He should have had it on the 8th Sept.

It’s only a week, not much time to wait is it?

Except that on the 7th of September, the doctor who told me he needed the drain also informed me that it was urgently required because of a complication with the end of his VP Shunt tube in his stomach sitting in the pool of infection. If the infection got inside the tube it would travel up the tube and to his brain. No prizes for guessing the horrendous outcome if that happened.

So an extra week sitting in all that currently unnamed infection, are they sure that’s not a week too long now??

For those of you who don’t know, a VP Shunt is a piece of equipment that is fitted into a ventricle in the brain to drain off excess fluid in the brain when the ventricles either don’t work properly or at all due to hydrocephalus. Hydrocephalus is a condition closely associated with Spina Bifida that causes a buildup of excess fluid in the brain. Most children born with Spina Bifida would normally have hydrocephalus as well, the stats when my son was born was only 1 in every 100 born with SB would not have hydrocephalus.

A tube runs from the shunt in the ventricle down the side of the skull, along the neck and down over the collar bone and into the stomach where the excess fluid drains off into the system safely. The tube is roughly 4 or 5 feet long to allow for growth and is never interfered with unless the shunt develops a problem. My son has had his shunt since he was 9 months old. He’s only ever had one problem with the tube when it kinked because the hydrotherapy pool at physio was too hot for him and it made him ill for 3 weeks. He was 10 years old then. Unsurprisingly, that happened at the same hospital he is currently in. The ineptitude appears to span 20 years and counting.

My apologies for the medical lesson, I just need to dump all this stuff somewhere before I go stark raving mad and end up needed a white jacket with shiney buckles up the back and wrap a round sleeves, or a new heart.

Currently my palpitations are actually visible to the naked eye they are so severe and constant.

The nurse told me not to worry, she would do the medicated wash down every day from now on… she never agreed to dress the pressure sore….

Why do I need to worry?

.*♥**♥*★ *♥*..*♥*. BERNARD *♥**♥*★ *♥*..*♥*.


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