I keep thinking that cardiology must have got me mixed up with another, my heart is fine. Why the hell are they doing a triple heart bypass? Then the pain, the dizzyness, the nausea, the gasping for the next breath comes on, like a beach being invaded by billions of crustaceans. Oh yeah, that’s why!
People are always kind and telling me all positive stuff, and it does help, but it seems my chances are a bit less than most.
I have crohns disease, sadly no immune system due to the Crohns meds, now I am told after 30 years very out of control and misdiagnosed type 1 diabetes, that is in itself a big complication, I take several other meds for various other conditions.
The THB is not an elective op. It’s have it or die, it seems. But I still can not get it into my head.
I truly am not scared of death, I ride motorbikes, lol. It’s kind of the horror stories some folk feel the need to share, including a nurse at my pre-op, who told me about a guy who’s chest came apart after the op and he has to live with that, which unnerves me. But still it’s not even that which worries or rather upsets me the most, it’s my very very close to home estranged relatives, that know about how ill I am and still have made no attempt to contact, never mind speak to me.
If, and it really is, and only if, I do not survive this, I will go to my grave knowing they cared nought. It kills me, cuts to the bone, because I truly thought they felt some level or care or even empathy if not any love for me, my love for them is and always will be as strong as ever, its unconditional, but sadly my pride isnt. However, now I realise how easy it is to poison people’s minds against others with lies and manipulation. Sadly, there is in my experience no way of challenging that.
Don’t get me wrong, I am not perfect, I allowed myself to be changed, or rather more truthfully, I really didn’t realise that grief had a huge destructive impact upon me. I did get very angry and frustrated at the needless loss of my kid (18yrs younger) brother. I blamed people who were hurting as much, if not more than me. At the time that blame seemed logical, but it truly wasn’t. Knowing now why things happened, I truly do understand. I will forever blame services, and in particular the nursing and medical staff at Chesterfield Royal Hospital NHS FT & Royal Primary Care and the doctor at Northwingfield medical practice, along with the social work staff Derbyshire County Council Adult Services, and let’s not forget the greedy corrupt politicians and their cuts made under the sham that was the lie of austerity, for letting him down and allowing/causing him to die as they did, in agony and confusion. I do not, however, blame my parents in any way. They did more than humanly possible to help him. He only survived as long as he did because of them. I will not, however, forgive myself, and that anger, aimed solely at me, remains.
So the next few months may and hopefully will be life changing. If all goes well, I may be able to live without wondering if this day will be my last. I have only in reality to last a couple more weeks or so to actually find that out.
I have people there for me, my soul mate, my folks, and many friends, and I am so glad and thankful for that.
As I said, truly, I am not afraid of not coming out, I have made it clear I will donate any organs that are usable, given my meds and the damage they do. I am only sad beyond words that the two people I wanted to be there in any way at all, have showed no interest, and if I do not survive they will have to live with that knowledge for ever more.
Sorry for making these thoughts public, but part of me believes there is a very big chance I won’t be able to, even on here, and possibly never in person.
Tag: #family #parents #NHS
Meaning of my life at least.
I am so fed up of the attitudes of folk right now. When I got ill and had to retire I lost so many friends, they couldn’t understand how being ill effects folk.
They were oblivious to the all too often need due to pain, exhaustion and medication for me to cancel long standing arrangements or at times my not arriving after having set off.
These were people that had claimed for years, decades in some cases to be the best of friends, even calling themselves family.
I spent such a long time myself in coming to terms with the effects of crohns disease, insulin controlled diabetes, fibromyalgia, COPD, heart issues including angina, SVT and chronic heart disease, neuropathy, PTSD, and the depression and anxiety that goes with all of this.
People expect because of my size and personality, for me to be strong. And on the days they see me I try to be, often taking on their problems as my own.
During this journey there were points I would get very low, or even angry, mainly at myself. After trying to cope with the loss of my brother Robert, and truly struggling with that, he was 18yrs younger than me and like my son, me having had a huge role n his childhood, I lost all contact with my adult children, they only saw the grumpy side of me, believing I should just get over it. Their mum even ringing me and telling me I was a useless cripple, and to just die. Sadly some of my family chose to reinforce this view. I still have no contact, no idea about their lives in any way.
This year though things have been even more difficult. In January my dad got very ill. We took him to A&E at Chesterfield Royal Hospital with back pain, whilst in A&E a doctor told him he had cancer (no scans had been done), he was then moved to a ward, where they initially failed to recognise what was wrong, this caused his kidneys to fail,
He then was discharged with sepsis and within hours because we had recognised just how ill he was, we took him back in. Then they actually did some tests and whilst we were all with him a registrar told him, and us that he had cancer in his kidneys, that his kidneys had died and he had 2 months to live.
Thankfully she was completely wrong and had no cause to say any of this. There was no evidence of cancer, but there was a blocked tube from his kidney to his bladder which again they failed to operate upon. After being told he had 2 months to live my dad lost all hope. He lost three stone and refused to eat.
Eventually in April they realised about the pipe and after further investigation, with us meeting with consultant after consultant they decided to do a nephrostomy, basically a tube inserted directly into his kidney and bypassing the bladder completely. The urine from one kidney now draining into a bag.
It was almost a miracle cure for him. His kidneys that were supposedly “dead” returned to full function. Biopsies had not found any evidence of cancer. There was once again hope for us. Not so much for my dad himself though. From being a very fit 80yr old, happy to be walking round a car boot or driving to France, he now was a shadow. He was around 7 stone and almost 6ft. He became frail to the point of him wanting to give up. He once discharged would only sit in his arm chair staring at the walls. His passion for cooking had even gone. He seemed just to be waiting for God. The registrar had stolen all hope from him, and even when disproved the physical effect upon him was extreme.
Prior to him getting ill my life had been difficult, particularly in winter, and from being as active as possible in the local bike world and my club, suddenly I wasn’t seen anywhere. I lost contact with those who insisted on calling me brother (something after Robert actually took on a new meaning) and spent the majority of my time at hospital or with my folks.
In May I went away for a weekend to recharge, and to spend time with some long standing friends and my absolute soulmate. During this weekend I planned to return early to meet up with some others for a planned event, but my bike died on me. The gearbox went and I had to crawl home. The bike has ever since been in a mechanics garage being rebuilt at a cost I will not dare to share, needless to say I am glad I don’t smoke or really drink.
Then it was back into either being at my folks or with my dad at hospital. I had to cancel my own medical appointments including procedures that may long term prolong my life.
It was July before things started to settle a little for my dad, but even then I was around with him every moment I could be. The problem with a nephrostomy is that it can easily pull out if you catch it, it can cause infections inside your organs. It is pretty unpleasant. So still hospital or home for my dad.
Then the next level, he got a temperature, and became very sick. We took him to Chesterfield Royal Hospital yet again after his GP’s failed to act, he was admitted for critically low sodium, but even though I had assurances from the medical director that he would not be discharged until his sodium levels improved, his infection treated and he had stopped being sick. They kept him for two days on adult frailty then discharged him after insisting his sodium was fine and he had stopped being sick. This was sadly a lie. Within a few hours of discharge my sister took him to Northern General in Sheffield and they immediately transferred him to Urology at Sheffield Hallamshire Hospital.
He then was transferred to ITU and remained there for a few days with critically low sodium of 108 which caused severe delirium. He was dangerously ill and also had a severe kidney infection. Eventually after 6 weeks we have my dad home thankfully. It’s been horrible for him and my mum. He is slowly returning to being him, and now I can change his dressing so not relying upon district nurses. We have a temporary care package in place, but there is no long term plan as yet.
I am with them every day, despite my own health making it beyond difficult. I am however not complaining. I have during this time found my true friends, those I can rely on, and one above all others, and sadly lost too many yet again because they failed to understand.
Being there for others can be difficult, it can put stress on you, physically, mentally and emotionally, of that I truly am certain, however I am so lucky to still have my parents, they have been part of my life from day one, through the trials and the joy.
Non of us are perfect, but we can show our true selves when those we say we care about truly need us, whether as a friend or more.
That’s my meaning of life.
Jonesy, simply a human 