A Word of Warning

So. 3 years on and medical negligence is apparently unproved.

Without threat or malice I have been 'instructed' to choose my words very carefully when describing what I went through. Well excuse me! I have only used words given to me by consultants or my own words because, let's face it, I was there. I do not attempt to describe clinical and medical but I can discuss how I feel and what I thought. I can also draw upon the words given to me by professional medical people.

Here's what my solicitor has told me...

I know that you are keen to highlight the shortcomings of the NHS (and possibly even the legal system by now), but my concern is that if you are ever challenged, you may have to admit that in fact your case was investigated using a very highly regarded and experienced expert and counsel, who concluded that the evidence just would not support a legal finding of negligence. This might rather undermine the point you were trying to make. I am not saying that people should not speak out; indeed, it is my job to do so and has been for nearly 25 years and it is true that the NHS does fail people. But I think what I am trying to say is that you do need to choose your audience carefully.

I get what she means but please! SURELY it is no coincidence that other people have gone through similar to me... case in point refer to this link.

We all know ICU did a great job as did Mr Barlow and everyone else. But this was after the damage had been done. It all began with an ERCP and poor nursing in Digby Ward.

I'm going to finish this post with the name of the muppet who should have been reprimanded for poor nursing (I'm not allowed to call it negligence!!!) Senior Nurse K Stoddard. Have a read of the pdf. This is the reply we got when we first complained about the quality of care I got on Digby Ward.

AND, let's not forget this picture below. Every nurse has (or had) one of these. Made any difference? I don't think so!

To be continued...

It's been a while!

Sorry to any eager followers but not had chance or inclination to post for some time. I hope this means I've not needed to and therefore I'm improving....? Hmmm, jury's out on that one.
So, what's been going on... We'll plenty. Plenty of work (luckily) and plenty of cycling (hooray!)
I've ridden a few events this year which were repeats of last year. I did the Ride with Brad event again and my opinion has not changed.... Effing hard work and totally relentless. This time, ridden with my partner in crime, Jon who, I'm pleased to say 'enjoyed' it as much as I did. No doubt we'll be back next year.
In between all this we (me and my daughters, Alex and Scarlett) ran the London 10k again. Think this will be my last... Fancy a different city for a change. This one we billed as "one dad, two daughters" and we were raising money for Scarlett's charity, SCF. In fact, she's doing a charity tandem skydive TODAY!!!!... I'm such a lucky dad to have such fantastic kids :) She had perfect weather and a great time raising over £700

Also rode the Cat and Fiddle. This has to be one of my faves now: it's back in my home town, weather was good and it finishes at a bike shop! Brilliant!! Yet again, the same photographer was attempting to rip off all riders... This chap seriously needs to rethink his prices. Oh we'll, not my problem.

this is from another ride "Le petit grand prix"

Speaking of rip offs, allow me to mention the London 100. This event has piggy backed of the British cycling success of 2012. This is a good thing. The route is based on the Olympic circuit and takes in Box Hill, finishing on the royal mile on closed roads. In fact it's a full weekend of cycling which has to be brilliant. It was ballot entry and I was lucky enough to get a ticket. However, due to my hernia I had to pass and defer my place to 2014. Great. Guaranteed entry for next year. Yes, but at a price. Not only did I pay £45+ for 2013 entry but I've had to pay again for 2014.... This is a bit of a liberty but I guess that's life. Not overly impressed so I'm hoping the event will be a stunner.

Speaking of stunners, plans are now set to ride Paris-Roubaix. Hotel booked, just waiting to book places to do the ride. This will be a great weekend assuming I don't kill myself on the pavé as the following day, the pros take to the cobbles, so we ride then get to watch. I've even persuaded Andy and Jon to ride. Brilliant!!!

Okay so that's the fun stuff. What's going on health wise I hear you ask. Well, hmm, where to begin. A few weeks ago I returned to the docs as I thought (and I'm still not sure) that my hernia has returned. Pain and a definite lump. Now, I have lost a bit of weight so maybe this is a factor, but it just doesn't feel right. The GP I saw is one I can trust and she says it's NOT a hernia just scar tissue under the skin. No surgeon would really want to open me up there as it'll be a right sticky mess (nice!) and I should maybe pop back in a month so she can check again if anything is occurring. The drain sites are still pulling (adhesions) but it all just feels really uncomfy. Maybe it's because of my exercise too. Am I overdoing it? No, no more than usual. Am I carrying too much stuff? Probably but, what can I do- I have to do my job ffs. She said, if it's not comfy or I'm worried, I should wear my compression tops. Hang on, the point of having it mended was so I didn't have to wear them! So, I carry on regardless. Is it worrying me. Yes but it's not on my mind all the time.

As for my head, what's going on there.... Well, where to begin. I'm all over the place at the moment (which is probably why I'm blogging now)

A few weeks ago, I did my 'talk' to a group of third year critical care nurses about my time in hospital and how it effected me and the family. This was at Anglian Ruskin University, Chelmsford campus. Pam Page, the senior lecturer had heard me do this some months ago in London and asked me to speak to her students. Brilliant. No problem.

So, a short edit, a practice and advice from a trusted friend (thanks Nancie) one PowerPoint slide and I was off. Amazing the different questions I was asked to the previous talk. Obviously being [new] nurses! they wanted information on what a patient expects from a nurse. I'd had a bit of a think about this and the one thing that always came to me was that an ICU nurse needs to be so dedicated. Wiping someone's arse and doing almost everything for them takes a special person. As a patient, it is SO degrading having to allow this to be done and if you get a nurse who really doesn't want to do it, you can spot them within seconds of them being assigned to you. It's obvious (assuming one is conscious of course!) and it makes it worse. An ICU nurse needs to be able to keep talking even though the patient might not be able to respond. I always loved the nurses talking about anything when they were about: it really breaks the monotony of the days in there; they need to be able to be great with family too as they are going through it just as much as the patient... If not more so!

I enjoyed the Q&A more than delivering the talk. I guess, it feels more informal which I prefer. I think they 'enjoyed' it. More importantly, I hope they learned something from it.
Feedback from the students was...

"The students were very grateful for your very honest insights through your critical illness journey and they have evaluated it as one of the highlights of their course so far."

Meanwhile, more medical information gets discovered. Have a look at these links:

http://www.bsg.org.uk/pdf_word_docs/prophylaxis2001.pdf

http://www.asge.org/assets/0/71542/71544/23ACB4AA-9F56-4F32-B533-42AEC06B0D9E.pdf

So, the initial ERCP culminating in all my illnesses could have been possibly avoided if antibiotics had been administered before the procedure. And this info was available at the time. 

You know it gets to a point where I get information overload. Where as it winds my wife up, I simply cannot process it any more. It doesn't matter not to me. I'm alive and I need to focus on that. I have to focus on controlling my PTSD. This is all that matters. Keep sane. Keep calm. Keep riding my bike. Keep focused.

Having said that, the occasional 'bump' occurs. I had flashbacks again a few months ago during all the hot weather.mi was on an event... the Cheshire Cat (normally in March but postponed to July due to the snow) and I bonked. Badly. I overloaded on water which caused me to flashback to ICU and the tube I had and the insatiable thirst I felt. It was all consuming and really effected me. Thanks to Jon and Mark for looking after me and helping me over the last 10 miles... Great, great mates. I owe you.

I had a few more incidents like that in the following weeks but nowhere near as bad.mon each occasion, I rang Helen. This is the deal. I tell her. I tell her what's going on in my head and try to talk myself out of it. It helps. It's not a cure but it does help and gives me room to cope.

With the possible return of the hernia, I nearly flipped again. It becomes all consuming. It takes over. I hope the GP is right and all is okay. It's reassuring speaking to a Quack you trust and it helps allay a lot of my paranoia. Just hope she is right. Time will tell.

Ok, nearly finished for now except to say, Helen was on Facebook the other day... Like you do and she came across a link on the Sepsis Alliance page.

"OMG look at this!" She says. 

Jesus Christ. Not another. And it's Lincoln and... What, I'm mentioned?!

Needless to say, we have got in touch and we have met. We even have mutual friends! We spoke very briefly last Saturday. I have no idea if Jorg wants to meet again. I have no idea if we can be of help to each other. All I do know is he knows all about me because of this blog (which is a bit weird but I guess that's why I write this rant! To try and help others. To try and take some of the worry out of a shit situation. To show that you are not alone) 

To be honest, I'm actually surprised anyone has read any of this crap!!

Anyway, that's enough for now. There will be more as the 'verdict' to my medical negligence is looming. The news is not looking good but I'll be doing one of my 'let's take a look at how this has gone' dissections.... well, it wouldn't be right for 'Mr PTSD' to allow the opportunity to pass without some sort of rant. Would it.

WOW it's like a mind read!

Here's a cut and paste of an article on the NY times' website. I'm amazed at the accuracy or rather how much my experience mirrors this description. Scary! First, watch the interview...


Next, the article. Enjoy (if that's the right word!)

Nightmares After the I.C.U.

by Jan Hoffman

When Lygia Dunsworth was sedated, intubated and strapped down in the intensive care unit at a Fort Worth hospital, she was racked by paranoid hallucinations:

Outside her window, she saw helicopters evacuating patients from an impending tornado, leaving her behind. Nurses plotted to toss her into rough lake waters. She hallucinated an escape from the I.C.U. — she ducked into a food freezer, only to find herself surrounded by body parts.

Mrs. Dunsworth, who had been gravely ill from abdominal infections and surgeries, eventually recovered physically. But for several years, her stay in intensive care tormented her. She had short-term memory loss and difficulty sleeping. She would not go into the ocean or a lake. She was terrified to fly or even travel alone.

Nor would she talk about it. “Either people think you’re crazy or you scare them,” said Mrs. Dunsworth, 54, a registered nurse in the Dallas-Fort Worth area. In fact, she was having symptoms associated with post-traumatic stress disorder.

Annually, about five million patients stay in an intensive care unit in the United States. Studies show that up to 35 percent may have symptoms of PTSD for as long as two years after that experience, particularly if they had a prolonged stay due to a critical illness with severe infection or respiratory failure. Those persistent symptoms include intrusive thoughts, avoidant behaviors, mood swings, emotional numbness and reckless behavior.

Yet I.C.U.-induced PTSD has been largely unidentified and untreated. When patients leave the I.C.U., said Dr. O. Joseph Bienvenu, a psychiatrist and associate professor at Johns Hopkins University School of Medicine, “Everyone pays attention to whether patients can walk and how weak they are. But it’s the exception for them to be screened for psychiatric symptoms like post-traumatic stress or low mood.”

Now critical care specialists are trying to prevent or shorten the duration of the mood disorders, which can rattle not only I.C.U. patients but their frantic relatives. Sometimes family members, rather than the sedated patient, develop the symptoms of having been traumatized, tormented by memories of a loved one thrashing in restraints, delirious, near death. Other PTSD sufferers — victims of combat, sexual assault or natural disasters — also endure flashbacks, but theirs are grounded in episodes that can often be corroborated. What is unsettling for post-I.C.U. patients is that no one can verify their seemingly real horrors; one patient described a food cart in the I.C.U. selling strips of her flayed flesh.

“I.C.U. patients have vivid memories of events that objectively didn’t occur,” Dr. Bienvenu said. “They recall being raped and tortured as opposed to what really happened,” such as painful procedures like the insertion of catheters and IV lines.

The I.C.U. setting itself can feel sinister to patients, as if lifted from “The Twilight Zone.” The eerie, sleep-indifferent lights. The cacophony of machines and alarms.

Certain treatments in the I.C.U. may be grim, but they are essential. Intubation, for example: Patients who need help breathing must have a plastic tube placed down their windpipes for mechanical ventilation. The feeling of near-suffocation and the inability to speak can be nightmarish. Such invasive procedures may raise the odds that a patient develops PTSD.

A longer I.C.U. stay also increases the risk of post-traumatic symptoms. But some patients arrive more vulnerable to PTSD. Women may be more at risk than men, as are patients with a history of depression or other emotional difficulties. Because patients are often rushed to the I.C.U. unexpectedly, doctors cannot take a psychological history.

Age may be a factor. Elderly patients generally recover more slowly, but younger patients may be more likely to develop symptoms of PTSD. Experts suspect that young patients, further from natural mortality, are even more shaken by the possibility of unanticipated death.

Moreover, the violent events that land patients in the I.C.U., like gunshots and car crashes, tend to happen to younger people, noted Dr. Babar Ali Khan, an assistant professor at the Indiana University School of Medicine. Those events also exacerbate the onset of PTSD, he said.

But researchers have begun to identify the I.C.U. treatment that has led to the most harrowing flashbacks: sedation.

Sedation — to manage pain and compel patients to lie still and not fight the ventilator — is crucial in the I.C.U. But many sedatives contribute to the patient’s delirium and intense hallucinations, which can return, unbidden, for years.

A British doctor, Sarah Wake, was a 25-year-old intern when in 2011 she was intubated and sedated in the I.C.U. following a severe reaction to an asthma medication. She described her hallucinations in the British journal BMJ in May: “Blood seeping through holes and cracks in my skin, forming a puddle of red around me.”

She wrote that the fragmented delusional memories made it difficult for her to understand what had happened. “This prevented my psychological recovery and led to the development of post-traumatic stress disorder.”

For months she could not work in a hospital. Even now, after therapy, she is practicing medicine again and yet, she wrote, “I still cannot bear a shower curtain to be drawn as it reminds me of closed hospital curtains and hidden death.”

Dr. Wake was given benzodiazepines, a class of sedatives that includes Valium and Ativan, as well as opioids for pain. Researchers now believe that benzodiazepines may intensify the hallucinations that are so disturbing to I.C.U. patients.

The philosophy about I.C.U. sedation has gone through pendulum swings. In the 1970s, patients on ventilators were allowed to remain awake. But doctors turned to benzodiazepines to calm anxious patients and prevent them from fighting the tubes. If a patient was heavily sedated, thought doctors, the resulting amnesia about the ordeal would be worthwhile.

But in the last decade, researchers have realized that the benzodiazepines did not just give patients amnesia: the delirium and hallucinations they may also trigger in critically ill patients may set the stage for PTSD. Opioids can also cause delirium. Dose and duration are also relevant.

In January, the Society of Critical Care Medicine, concerned about the weakened physical, cognitive and psychological condition of many post-I.C.U. patients, released new sedation guidelines.

They urged I.C.U. doctors to treat pain first and only then to weigh using benzodiazepines for anxiety. Although evidence is not definitive, lighter sedation seems tied to better cognitive and physical rehabilitative recovery, as well as fewer and less shattering hallucinations. I.C.U. staff were encouraged to keep assessing patients for pain, alertness and delirium.

Dr. Dale M. Needham, an associate professor in pulmonary and critical care medicine at Johns Hopkins, noted that even when the sedation has stopped, a patient’s delirium may continue.

Many patients return home mentally shaken, with physical and cognitive weaknesses. Dr. Needham said they haven’t “fully recovered within six months or a year.” Therefore, he added, the I.C.U. stay can place a lingering burden on both the patient and the family.

I.C.U. nurses have taken the lead in efforts to alleviate the trauma of stays and to shorten the duration of the subsequent mood disorders, for both families as well as patients. In Britain, Germany and some Scandinavian countries, nurses in many critical care units keep a diary of the care they provide to a patient, with contributions from the family, which they give to the patient upon discharge. The diaries function as a realistic counterpoint to patients’ hallucinations or amnesia.

Judy E. Davidson, research nurse liaison for themedical center at the University of California, San Diego,and a former critical care nurse, teaches nurses to work with relatives of I.C.U. patients to reduce post-trauma symptoms of their own.

“The antecedent to PTSD is fear, horror and helplessness,” Dr. Davidson said. “If you give relatives things to do — applying lip balm and hand lotion to the patient, keeping their joints limber — it keeps their minds active and decreases the fear response and helplessness.”

The details of what happens in the I.C.U. often stay in the I.C.U.: primary care physicians rarely learn about their patients’ difficult journeys there, and so often do not evaluate them for problems that may have arisen. In the interim, a handful of hospitals in the United States are focusing on the challenges faced by post-I.C.U. patients, including PTSD.

Once a week for the last two years, Dr. Khan, a pulmonologist, has been seeing patients at the Critical Care Recovery Center at Wishard Memorial Hospital in Indianapolis. His team treats post-I.C.U. patients who have spent at least two days on a mechanical ventilator or suffered acute brain dysfunction during that period. About half, he said, develop PTSD.

Vanderbilt University Medical Center has been running a post-I.C.U. clinic on Friday afternoons since last fall. Typically, the treatment team includes a critical care nurse-practitioner, a psychologist, a pharmacist, a pulmonologist and a nurse who functions in a social worker capacity. They evaluate patients for physical, cognitive, social and psychological impairments.

But whether patients or family members develop PTSD symptoms or the full disorder, persuading them to seek treatment poses unique challenges.

About three years ago a woman, then 35, had a hysterectomy at a Tennessee community hospital but developed a severe infection. She awoke in the I.C.U., intubated, with delusions that she had been raped and that her family had abandoned her.

Since being discharged, she has had nightmares. She is afraid of crowds, frightened of contagion. She has retreated from activities at church and her children’s school. She has become claustrophobic, in reaction to having been restrained in the I.C.U., said James C. Jackson, a psychologist and assistant professor in the division of critical care medicine at Vanderbilt University School of Medicine, who worked with the patient in a study.

Though she knows she needs help, she is too anxious to go back to the community hospital, which she associates with so much anguish. Such avoidant behavior, Dr. Jackson noted, is among the most debilitating of PTSD symptoms. Even now, seeking medical care anywhere is extremely difficult for her. “This phenomenon is not uncommon,” he said. “But it makes it hard for individuals who need help to take the necessary steps to get it.”

Unexpected

So. The Cheshire Cat. Postponed from back in March I think. This was because of snow and a temp of -2ºc -not the best conditions with a lumpy course. The ride was moved to July 7 and so Jon, Mark, Dale and I (see above) set off to conquer The Cat.

I've ridden this a couple of times and it's not easy. It's a very hilly course with the infamous Mow Cop hill. Yet again it defeated me but to be honest, I wasn't overly happy in tackling this year as I knew what other hills were to come and some of those can be just as challenging such as Gun Hill.

Anyway, why am I boring you with my cycling again? WELL, something happened. I had a meltdown. Let me explain. We got passed mow Cop and on the run in to the first feed station at 30 miles. The day was blisteringly hot. I think the temperatures got to mid 30's- in fact someone told me that Wimbledon Centre Court temp hit 50ºc at one point , so it was that sort of day! At the feed station, refill bottles, grab some sorreen etc and have a sit down in the shade and we waited for Dale who was behind us. During this time I must have downed a litre of water very quickly. I was so thirsty and the water was so cold. Lovely.... too much too quick I think.

So we set off and hit Gun Hill, got over that to have another hill hit us square between the eyes. I cracked. So I got off and walked this one. I don't mind doing this. I not overly competitive about my cycling. I do it because I enjoy it (yes, even these hills!) it's challenging and I need it for my sanity. However, on this occasion I suddenly began with flashbacks. This was back in ICU, ventilator in place and be gasping for water...can you see the triggers. Thirst, water (COLD water), overheating (relating to my temperature in hospital at the time- think it was running at about 42ºc) and exhausted (again caused mostly by the heat)

I freaked out. I couldn't focus. I walked, I drank. I tried to focus on the next feed station which was about 15 miles away. I just couldn't. I wanted to stop. I wanted the sights and the taste to go away. My throat felt like it was closing up. As if the ventilator was in there and all I craved was to whet my whistle with some ice cold water. This is how it was in ICU at that point. Burning up, weak a a kitten and wanting cold cold water.

I got back on the bike at the top of the hill to hit yet another hill but carried on- descent soon and bomb down to a nice cold drink and hopefully the guys will still be there. The downhill bits were great. With the wind whistling by cooling me down, I managed to get focus and enjoy it again but more uphill bits soon brought that to a stop and eventually I got to the feed station.

Over in the shade I sat down with Jon and Mark and I was a mess. I wanted to throw up. I wanted to stop. I felt defeated and all I could see again was the view from the ICU bed. Later on, Jon had said I was talking weirdly and was really not myself at all. I had told them what was happening- that what I actually needed was a cold Coke which would not only give me an energy boost but also take my mind off cold water in a vague hope of getting rid of the flashback. I also asked for them to lead in in for the last 20 miles. I texted Helen. I had agreed if any flashbacks happen, I'd tell her straight away and if needed she's talk me down. I was sort of ok and so said I'd ring once we'd finished. I pulled myself together and we set off. 20 min out, and I was suffering again. I was dropping behind and could keep no pace at all. Totally not like me- this section was on the flat and I can tap out a good and steady rhythm - in fact it's usually me on the front! What was going on with me! FFS!!!

We then came across a place called Aqueduct Marina. There as a tea rooms sign so Jon decided i need to stop again and get some Coke inside me. We had 8 miles to go. Another 10 min stop and we set off BUT this time I was improving and we trained it back in with Mark on the front. I remember saying to him at one point- if he wanted to pick up the tempo to just do it- there was no way I had anything left to go on the front but I could keep pace almost as if on autopilot. We made it back. According to Strava I had a 'moving' time of 5:22:50 with an elapsed time of 6:54:35 that's alot of recovery time!!

Having said that, Dale was still out on the course and was a further 10 mins behind us with elapsed time of 7:05:29 and a moving time of 5:56:42

Temperature played a massive part in to this days occurrences and triggered things that need to stay compartmentalised. I guess it shows how random flashback triggers can be for me. No way did I ever see that one coming but I guess more regular hydration was needed: I'd had a pee at 0930 and then nothing until I got home at 2030 ish. I n that time I'd drunk about 4 litres of water and 4 litres of Coke. On the course I ate hardly anything as it's always mush- porridge for breakfast then it's a case of gels, bars and bananas.... needed something salty so we eventually got chips on the way home. On route I also take Magnesium Phosphate (Mag Phos 8) tablets- down a load at each stop to help with cramping.

Finally, can I once again thank Mark and Jon for towing me in. They didn't have to but then that is what cycling is about. It's a team effort and they were fantastic. Thanks guys. And big congrats to Mark and Dale for getting up Mow Cop... great job!

A Guide to Post (Incisional) Hernia Operation dos and don'ts... or what the doc won't tell you!

So I'm now 6 weeks post hernia op and according to the consultant and his team AND my GP, it is about now that I can begin to do stuff again.

Looking on the Internet to see what others have done, I'm struggling to find anything...certainly nothing positive and nothing really about any form of exercise regime so, as usual, it's me going down the trail and hopefully no errors route.

I have got to get this right: If I pull or dislodge the mesh, I'm screwed and back to theatre which I really would like to avoid. So what do I do? No one's said what I can and cannot really do... That's not strictly true... I had a telephone follow-up appt 3 weeks after surgery. When pushed I got this...

Q. When can I swim?
A. Ooo not yet.... 6 weeks after surgery.
Q. How about 1 May? (this was 5 weeks after surgery)
A. Yes, nothing too strenuous though
Q. How about cycling?
A. 6 weeks after surgery and take it slow
Q. Work?
A. [Doc] Does your work involve lifting anything over 15 kilos?
A. [me] Yes.
A. [Doc] No. No lifting. Office work is fine but no lifting. Break your loads to smaller quantities or put the item on wheels.
Q. When can I do my job properly again?
A. You can begin as I have said but go easy and be aware of lifting... Build it slowly over the next few months. The slower you take it, the sooner you'll get back to normal.

Okay, there are a few clues in there but not really much to go on and nothing to inspire confidence in a chap who had one hell of a time in hospital a few years ago. TBH, I was scared to do anything! The only marker one has is the magic '6 weeks'... It's as if something amazing will occur at this point. Let me tell you, it doesn't.

1 May, let's get swimming... 10 lengths... No rush... Take it steady... See how it goes. Hmmm feels a bit like its not right... Ok stop, rest. Try in a few mins. Yep, that's ok, carry on. So the idea is, listen to your body. If it feels wrong, stop, rest, relax, try again and so on. So far so good.

So this will be the routine for now... Swim every other day... 10 lengths for the whole of May. Currently finishing week one and next we'll add the bike in and that will be at magic week 6. Cycling regime will be couple of times a week, flat course, no hills and no further than 30 miles BUT actually beginning at 16-20 miles. In June, depending how I feel, I'll introduce a spin class and a longer route with a climb... Probably my North Carlton route which I think is just over 30 miles.

Sunday arrives and time to ride. I have my 2 domestiques with me, Jon and Andy. Their job is to take the piss and to stop me getting stupid and over cocky. First ride out and what do we do... 26 miles... First half with me being cocky and riding on the front. Second half, licking my wounds, realising I'm not quite indestructible again yet and getting shelter off the boys. Heart rate is running at an average of 172 rising to 192 when I decided to hoof it on a straight flat I usually enjoy... Jesus, my fitness has gone to sh@t in the last 6 weeks. Normally my HR would be 140 rising to 170 on the same route... Looks like I have my work cut out :(

When I get home, I'm sore. And because I'm sore, I'm now worried. Worried I've 'popped' something or I've pulled my gauze, done too much too soon etc. This is now constantly on my mind. Fek!

What do I do? I know, another ride the following day! Ok, ok, shorter route this time... Owmby loop. That's 17 ish miles and flat as a fart. Yep, that was ok. Day after, rest day and type this blog up AND ring the hospital or GP.... Just for some reassurance.

I decide to ring the hospital where I had the surgery. They had told me I could ring anytime. Luckily I got straight through to Maria, one of Mr Ubhi's team and the lady who I have spoken too a few times. "Hi, this is Phil, the hernia patient from Lincoln who had that awful op a few years ago... Oh, you remember me" [is that a good thing that she remembers me?]
Anyway, I tell her what's going on. She says it would be likely I'd be in alot of pain if I had pulled the gauze, that I'm doing well (how does she know?!!!...She hasn't seen me since I was operated on!!!) and if I am still worried, to see my GP. She cannot see me as I'd need referring again. Bizarre, just because I'm passed the magic week 6, I must be better and thus signed off?!

Following this, I popped along to the GP and at long last I'm beginning to feel reassured. Firstly, I'm signed off for a further 2 weeks and after a long chat and some prodding of my scar area, I feel better in my mind. "Remember, you are 6 weeks post op so you wont have any stitches now... they will have dissolved and your body will be repairing around the mesh. After 6 weeks we'd normally recommend light office work but as your job involves more carrying, 8 weeks off is very normal. You are doing all the right things. Slow build up in work and exercise. Don't expect to be lifting anything big to begin with. Break loads down to smaller quantities and be gradual with your exercise. You haven't pulled or ripped anything. You are doing okay!"

So there you have it. There's no set in stone regime but for the more active person, that tale should give you some clues. The other thing to try and avoid during the 6 weeks of doing sweet Fanny Adams is not to eat too much! At my age, it's harder to shift!!

Degraded

This has to be seen to be believed. Because I am currently on 'sick leave' and I use those words in their loosest possible sense, our lovely government have sent me lots of forms to fill out to claim what is actually a pittance of a benefit to get me through the next 6 weeks (I'm at week 3 now having filled out one massive form already, so if I actually get awarded anything, it'll be back pay...assuming that's allowed!!) As a tax payer and a citizen who pays his stamp, I'm not allowed SSP because I'm self employed. I tell you, being self employed is not rewarded in any respect in this country. I might as well have a bell and yell "unclean" because that is how I am made to feel... like a fekking leper!

A new form dropped through to door today to add to the leper feeling and, my god, this one's a doozy!

Limited capability for work questionnaire. WOW! Are you actually serious? Feel free to click the link... you can see the form for yourself! The questions are SO PATRONISING. Ok, someone somewhere needs this form but I would imagine it is a very low percentage of people with not much education. Yes, it's that patronising. PLUS, remember, I'v e already filled out a massive tome of paperwork AND submitted 2 medical sick notes to cover my 6 week period of recovery.

Below are some pictures from the form. I had to share this. I am incensed.

Now, okay, I'll be honest, I did pause for at least 5 seconds at answering the question below. HAHAHAHAHAHAHAHAHA FFS

BUT knowing this bunch of yoghurt weaving jackety twats, I'd get away with putting PTSD.

Not everyone who makes such a claim are Jeremy Kyle contestants. Some of us are genuine. Some of us are honest. And some of us are the fucking people who fund the benefit system. It's always people like me made to feel like a leper for DARING to ask for a benefit. WELL BOLLOCKS I am gonna ask! you take enough of me and my family so cough up.

Rant over. I've been Nearly Phil Crow, goodnight :P

Read All About It

I wanna sing, I wanna shout,

I wanna scream till the words dry out.

So put it in all of the papers, I’m not afraid,

They can read all about it, read all about it

Okay, I'm not Emily Sandé and I didn't sing but the sentiment is right. Yesterday I got up and said it as it is and told a room full of consultants, paramedics, nurses and medical professionals a patient's experience of dealing and coping with the reality and following fallout caused by critical illness.
As you know dear reader, I was invited to speak at Saving Lives-Sepsis Conference down in the Big Smoke. You'll notice in the above paragraph I did not say sepsis. Sepsis is not a thing on its own. Certainly in my case, it's one part of a very bigger jigsaw and you need all the pieces to show the whole picture: how it all began, hospital, home, coping..... ultimately everything that is contained within this blog. This is something that I had always kind of wanted to do. "Just put me in a room full of doctors and I'll bloody tell them how it is. They have no idea!" and that is sort of true. They don't have any idea. Once you leave the hospital, they have to move on to the next case. I guess they cannot take an active interest in every patient BUT they do need to know what can happen and how lives are effected. Enter Phil Crow, soap box under my arm!
Putting my 20-25 mins together was quite difficult emotionally. Thank goodness I have this blog to refer to as bits would have been forgotten or possibly more traumatic in redressing in conversation with the family. This was always something I needed to put together on my own, then and only then, bounce it off a couple of trusted friends (thank you Frank, Lynn, Simon and of course, my Helen) edit and go again. The first time I read it out loud I couldn't stop crying. Bloody hell Phil, pull yourself together! Wow, this is gonna be more difficult than I thought. Ok, read it to a few more people and you'll desensitise yourself to it. That sort of worked. So I got the text complete and me 'desensitised' before I went into hospital for the hernia operation. I'd made Aggi, my Lincoln sister, promise that if anything happened during the operation that she would go and read this out for me. Good. Sorted. Off to Nottingham.
Right, that seems to have gone well, I'll be fine doing the presentation myself. The day before going, I checked over the text, made a couple of changes and read it out loud on my own. Not too bad. Note to self - look up a bit more! In the afternoon I read it out to my very good mate, Simon who does alot of presenting. I blubbed. I wasn't supposed to but I got caught on a couple of bits and choked. "brilliant" he said. You need some of that. It makes it more real, more you and that is why you're doing this... It has to be emotional. I guess he was right. Amongst a day of clinical presentations and the possibility of 'death by PowerPoint' my bit was to be heartfelt and on the day, it was.
Petrified in the build up and listening to Ron Daniels opening presentation, I got more and more nervous. Listening to him introducing me (slightly embarrassing as I'm not very good about blowing my own trumpet, or anyone else blowing it for me...so to speak!) nerves just disappeared, I got up and got on with it. Looking up was not as difficult as I thought. Looking at the audience they actually seemed attentive. Yes, I choked WAY more times than I expected but it was genuine. By the end I was almost in tears. Blimey. Was that okay then?
And then it was over and on to a small Q&A followed by coffee break.
Feedback was actually quite humbling. The majority of it was something like "that was brilliant. I could not have got up and done that!" Jeez, someone even used the word 'inspirational' again. I really do not feel inspirational at all. All I wanted was to drill it into their heads what survivors of sepsis and their families have to go through and how we are treated by the outside world (by that I mean by insurance companies, self employed/sick pay etc) and how, even years later counselling may still be needed and the effect on the family unit. I think they got the message.
Twitter was also buzzing under the hash tag #sepsis2013 all day, and I got a couple over very kind remarks:

Best of luck to good mate @digitalcrow who's giving a speech at #Sepsis Conference today

@digitalcrow Thanks for an inspiring talk from the patient's perspective #Sepsis2013

#sepsis2013 Emotional talk given by sepsis survivor, hitting home how sepsis can impact on people's lives, thank you. @WeParamedics

A most humbling & inspiring story of surviving sepsis from @digitalcrow #sepsis2013

After listening to @digitalcrow story today, this quote I read via @skram at #TEDMED resonates "recruit the heart and then train the brain"

Thank you @SepsisUK @digitalcrow @MicrobLog_me_uk for the excellent presentations today. Informative & thought provoking #Sepsis2013

Hugely proud of my inspirational friend @digitalcrow for telling it like it is @SepsisUK today

So there you go. That was the day I got the opportunity to tell it as it is. Do I feel better for it? I think so. I'm glad I did it. Would I do it again? Depends on who the audience is and if it would help make a difference. Ha, a room full of insurance companies would be good. Sepsis... No a critical illness?!...Shame on you! Financial Ombudsman.... PTSD, not exceptional circumstances?!.... shame on you as well! Bastards.

There will me a paragraph to follow. Apparently my presentation will be evaluated from questionnaires that all delegates at the conference fill out. Good or bad, I promise to post results for your delectation. Watch this space!

1 June and I'm finally posting the comments... unedited, as I got them!

1. How did you rate the conference?

	Sepsis	Sepsis %
Excellent	5	63%
Good	3	38%
Average	0	0%
Poor	0	0%
Very Poor	0	0%
Total	0	101%

6 Thank you for such a motivational event

2. How did you rate the individual sessions? Please rate each speaker and session on a scale of 1 to 5 (with 5 being very good and 1 being poor). 

Speaker	Presentation Skills Rating					Subject Content Rating
Phil Crow	1	2	3	4	5	1	2	3	4	5
	0	0	1	5	6	0	0	0	1	11
	0%	0%	8%	42%	50%	0%	0%	0%	8%	92%
Comments:	2 Moving.  Pat perspective always important 4 My main reason for attending today was to re-motivate me to continue my sepsis journey.  Phil’s story has given me this 8 Powerful

6. What topics would you like to see covered at future conferences?

Maternal/paed sepsis/obstetric difficulties

Future challenges – eg multiple drug resistance

Manual obs – back to basics

Intentional rounding – do we have to prescribe care?

Nurse prescr vs accurate drug admin

When sepsis can be managed in community

Major trauma network ops

8. What was your overall impression of the conference?

2 Hopefully will give my trust the impetus to introduce a pn (?) hosp screening tool

3 Excellent – motivational and inspirational speakers and topic – flowed well

5 V good speakers.  Informative and from a wide range of specialities

6 V much enjoyed whole event.  I have learnt many points from the various speakers.  I am really excited about the future of our abilities to treat sepsis more effectively

10 V relevant to practice