One of the hardest things to do is admit you’re sick. Not just feeling a bit ‘off’, but properly sick, in a life-threatening way. We hear so much about ‘man flu’ and we live in a culture of presenteeism and hustle, where the only way out is through. Keep pushing, and your determination will see you through.
It’s over three years since I started to get properly sick, and I’m still dealing with it, and actually it seems that I might have had an underlying condition for a while longer that wasn’t spotted. Looking back, I just didn’t know how to say how I was feeling, not really, and it’s hard when you have a reputation for resilience and reliability.
If I go right back, somewhere in about 2007-2008 something started to go wrong. I suddenly got arthritis in both hips, reducing my mobility almost overnight. X-rays confirmed that it was significant, but I got advised that I was too young for a hip replacement and got physio that managed to overcome some of the worst aspects of it. Other things started to go wrong too; whilst on a vacation in The country I rolled out of bed, and ‘something’ went wrong. It was a pain and numbness in my left side, that was eventually diagnosed as acid reflux. I was on the standard PPI drugs from then, although I had doubts that the diagnosis was right.
I had couple of spells of anxiety, quite debilitating, affecting my ability to drive. I did notice that taking anti-anxiety drugs actually removed some pain and also the need for any PPI drugs. But I have never been of the opinion that the anxiety is the root cause of anything, it’s more a side-effect.
Fast forward a few years. It’s 2018. There now follows a timeline of events that include multiple visits to doctors, and eventually the hospital… I omitted names because this isn’t about that. I’ve thanked the people that I need to and lessons have been learned by others.
Jan 4th-5th 2018
Trip to London. I’ve noticed that I am losing weight with no specific effort, and while in the office I experienced some odd symptoms including being unsteady on my feet.
Jan 9th-11th 2018
Trip to Germany. Further odd symptoms, including oversleeping and almost missing the start of the working day, which has never happened. Whilst in the office, HR takes me to one side and expresses concern that I look very sick and unhappy. On the final day, I experience a hot flush/sweats/lightheadedness and almost faint. This has happened a couple of times before but never like this. It happens again at the airport. I put this down to stress and ignore it.
Feb 1st 2018
London trip. Experience a dizzy spell and someone has to help me sit down.
Feb 13th-14th
Paris. More dizzy spells. Colleagues tell me I look unwell. They have noticed my weight loss.
Feb 19th-21st
Germany. I have to make quite a few people redundant as part of a business reorganisation, a horrible experience as many of the people were people that I liked (although also I somehow got volunteered to fire people I’d never me, it’s that resilience again I guess?). Whilst walking back to hotel on 20th, I faint, but somehow manage to prop myself up against a wall such that nobody notices.
Apr 9th-14th
I lost my voice completely for no obvious reason, not really a sore throat. Carry on working (as I am remote and rarely had to speak to anyone directly). Doctor gives me antibiotics.
Apr 27-29th 2018
Holiday in Netherlands. As soon as we arrive at the hotel I go to sleep and we lose the first day.
May 12-14th
Lose voice/flu-like symptoms. Get antibiotics again.
May 28th-Jun 1st
USA work trip. Mostly just exhausted. I am taking a lot of painkillers and probably also drinking a bit too much to get through the stress.
Jun 28th
Meet former work colleague who is now CEO of a company. He offers me a job on the spot. I tell him I am too sick & exhausted to do anything and unfortunately can’t take it.
July 17th-19th
Doctors on morning of 17th, another spell of flu-like symptoms, get antibiotics again. Despite this, fly to Paris for two nights.
August 7th
Visit doctor to ask about the overall situation. She puts it down to stress and exhaustion, and tells me that I need to be off work for 4 weeks. Her opinion is that I will die if I do not stop immediately. Heart attack, stroke or pneumonia, she says. I start taking Sertraline for anxiety which has interesting impacts on my stomach problems – they immediately go away.
August 7th-31st
At home recovering. No further symptoms but am constantly tired and sleep a lot.
Sep 4th
Back to doctor. Cannot remember what this one was. May have been ‘back to work’ appointment.
Sep 18th
Whilst in London office, faint briefly but recover without anyone noticing. Then I have a 1-1 meeting and start to heat up, and pour with sweat. He is shocked and we stop the meeting. I go home without telling anyone what just happened.
Sep 24th
My wife gets severe flu and is bedridden for a week. This is unusual for her. At some point I also catch it.
Sometime in September: notice that I smell different, like popcorn. Mention it to a few people. Later this turns out to be a known symptom of a lung condition (either abscess or pneumonia).
Nov 1st
Meeting friend in London and realise that I am really unwell and tell him so. It feels like something really severe in my respiratory system or heart. He tells me to get on the train home, so I do. This was the point where the illness crossed over into something that couldn’t be ignored. Some time later I learn that there were people with flu and pneumonia in the office that day, and I do remember telling someone to go home because she was coughing so much. If only I said the same thing to myself more often.
Nov 5th
Doctor – get antibiotics again.
Nov 14-16
London office, then an evening out with the team. I have to take an important work call and end up walking and talking through the cold streets of London. Decide to go to my hotel instead of rejoining the event. My symptoms start to come back yet again. Despite this I take a trip to the Paris office on the Eurostar. I am coughing the whole time. When I return to London late on 15th, I go to my hotel, and feel too ill to go to eat at a restaurant. End up getting a sandwich from local shop and go to bed. I remember thinking that this isn’t normal.
Nov 19th
I am coughing up blood in small amounts. I go to doctor and get antibiotics again.
Somewhere around this time, I have some sudden neck problems, and it clicks in such a way that my breath goes away. Self induced whiplash? It reminds me of the ‘getting out of bed in The country’ incident. Same symptoms. It’s enough to stop me doing much for a few days.
Nov 26th-27th
New bay window being fitted at home. The house gets incredibly cold and I start to suffer symptoms again.
Dec 4th-5th
Paris again. Evening meal with colleagues. I cough so much people in the restaurant move away from me. I go back to the hotel feeling incredibly sick.
Dec 12th
Meal with family. Cannot eat anything. From this point onwards, I struggle to eat and rapidly lose weight. Around this time I am going out to a lot of gigs and meeting people, trying to keep up commitments, and struggling to walk to a taxi a couple of times. I knew I was ill but just kept going.
Dec 15th
Getting up from the sofa at about 4pm, I struggle to breathe. I go to the kitchen and tell my wife to call an ambulance. She thinks I am just having a panic attack because of how anxious I’ve been. Somehow I manage to start breathing again and we go out to a gig in the evening. I am confused and struggle to find the taxi and get home. I remember that I took various items with me in a bag in case I had to go to hospital.
Dec 17th
Back to the doctor. He is new and does not do basic checks – however writes down my temperature as normal – without taking it. He thinks I have strained chest muscles coughing. Gives me strong co-codamol. This doctor is the one who really should have noticed and got me to hospital.
Start taking Co-codamol.
Over the next few days start to hallucinate.
Gradually I am unable to go to the toilet. I put this down to being a side effect of the co-codamol and stop taking them.
Dec 25th
My wife goes to my brothers with Mum and Dad for Christmas dinner. As they leave, I say I feel like I am dying but I don’t think they really understand that I mean it. Almost immediately they have gone, I suffer severe rigors. I wrap myself around in my quilt for an hour until it passes and somehow I manage to spend the rest of the day watching TV but am unable to eat anything.
Dec 26th-31st
Rigors and night sweats. Hallucinations. Difficulty breathing. Neck and chest pains.
Back to the doctor (same one as before) on 31st… again he is not very thorough and sends me for an ECG, plus more antibiotics. He doesn’t notice that the PPI for stomach issues that I am taking prevents antibiotics from working.
My weight is now down from 13 stone to 9 stone.
Dec 28th
Went down to town with my wife, she is convinced that I am suffering from panic attacks and need to be exposed to it, which I also believe. I somehow get to a restaurant, have to sit down. I tell her that I think I have pneumonia. I really struggle to walk back home, it’s only a five minute walk under normal circumstances.
Jan 2nd 2019
ECG comes back as normal.
I go out for a walk and have to sit down on the pavement. Perhaps the most fortunate thing happens when I see a neighbour and tell her I feel seriously ill; she can immediately see it. She contacts my wife and tells her to do something. This might be the point at which my life is saved.
Jan 3rd
My wife’s Nan dies aged 101. This has been distracting her from my illness (and has been a long time in her decline). It’s incredible to get to 101 and die from old age, instead of anything else.
Jan 4th Go to Chiropractor. I have somehow got the idea that this might be a spine/neck problem. In fact, I do have my spine realigned as usual, but after this something is very wrong. I start to cough up grey/yellow sputum in huge quantities.
Jan 7th
Doctor. See nurse. She is experienced and is immediately concerned when she sees my notes. She takes temperature, oxygen etc. and tells me to go straight to hospital, without delay. As a result I go there without taking things like my phone charger. One thing I learn is, never go too far without your charger. These things are like gold dust.
…and so it begins…
Chest X-ray.
Immediately followed by a CT Scan.
Transferred to Ambulatory care.
Doctor in A&E tells me that my left lung has effectively filled with fluid and cannot be seen. I am immediately put into a treatment room. My wife arrives. There are more than five doctors in there now. They put a chest drain through my back and almost straight away, 2 litres of pus drains out. They are calling this ‘reactive pneumonia’. I am transferred to the acute medical unit in Local hospital, put on all sorts of medications and drips.
Nobody can understand how I was able to function with this level of infection in me. They had been joking about it being ‘man flu’ until they saw the pus. I suppose if someone is able to function somewhat normally, it’s hard to believe that they are dying of an infection.
I have not had much experience in the hospital until now.
Jan 8th
Interestingly I suddenly develop an appetite as the drain continues to draw. They do not know what the infection is and I am subject to all kinds of tests. Move bed 3 times. There are people in the ward with serious problems, one person has shot himself deliberately in the leg. Someone else wanders around naked.
Whilst in Local hospital, my neighbour, who is a nurse there, visits and brings tea.
Medical students keep popping by and photographing the chest drain, which frankly looks like chicken soup is coming out. There are probably pictures of it on Instagram.
Jan 9th
Moved to the chest ward. They start to talk to the specialist thoracic team at Major hospital. I am receiving injections into the drain in my back to help break up the infection. The drugs are experimental and I have to sign consent. During the night, they forget to close the drain and I leak pus and lung fluid all over the bed. Man opposite is angry and violent towards his family and even the nurses. Eventually discharged himself, thankfully.
Jan 10th-11th
Some improvements in the infection. About 4 litres has drained but there are some pockets left. New person opposite talks deliriously in his sleep, seems to be reliving a painful memory of being locked in somewhere – he keeps shouting ‘Shed!’. They tell me that my immune system is completely compromised and put me on treatment for this, which causes constipation for weeks to come. It takes over a year to find the root cause of the immune system issues. I have friends and some family who visit me, and keep me going to some extent. One of my oldest friends really makes me laugh, offering to jump on my chest to get the remaining ‘stuff’ out.
Jan 12th
The original chest drain is full and has to be changed. Because the original was fitted in an emergency, this was quite a challenge to them. The site of the drain entry becomes infected and bruised.
Up and down with news about referral to Major hospital. One consultant thinks I am recovering, another thinks I am in danger. When I look back, I realise that nobody has much experience of this level of sickness.
Jan 13th
Woken in the middle of night for chest x-rays. I was taken down there in a wheelchair, and just pyjamas and no blanket, and left in a cold corridor waiting. I’d forgotten to take my phone with me and this was a real low point. I was freezing cold.
Jan 14th
First concrete mention of needing surgery. The rest of the infection is not draining and may have set.
Jan 16th
Transferred to Major hospital with possibility of surgery next day. I am in a ward of very sick people. One is also violent and is regularly smashing up equipment and shouting.
Jan 18th
Surgery didn’t happen but I was nil by mouth for most of the morning. Porter is nice to me and makes a nice plate of sandwiches for me. Another nurse can tell how distressed I am and brings extra cups of tea even in the middle of the night. Meet surgeon for the first time. He is an amazing person, as are his team. Surgeon and the registrar from the team chat regularly with me.
Jan 18th
Same pattern. Nil by mouth, then no surgery slots. They are aware of how nervous I am and are telling me it might only be keyhole surgery. Man in the next bed keeps playing his radio at full volume and shouting “NEED A POO”. At times it was actually funny.
Jan 19th
Surgery at 9am
Taken to theatre by the person who made me the sandwiches a couple of days earlier, also there was a medical student who I’d taken some time to speak to on previous days. I wish I could remember her better as her smile was very reassuring. It was her first trip to the operating theatre.
While waiting, I was asked one more time if I understood what the operation was. I had already signed the risk of death consent form. Surgeon was chatting about my music, as he was quite interested and we had talked about it a bit before. While he was doing that, he asked the anaesthetist to ‘wash out’ one of my cannulas, in fact she was injecting me. I feel myself going under but very slowly, and they start to wheel me in. I see the operating table, which is much higher up than I’d imagined, with a huge light, and all sorts of instruments on arms next to it.
Full thoracotomy, lung decortication, removal of a huge abscess. Wake up at 3pm and transfer to HDU. Am told that surgery had complications. Huge air leak means the lung is partially collapsed. I have two chest drains replacing the original one, plus a catheter, oxygen mask, various drips including morphine.
At night start to become cold and lose consciousness.
Ward Sister tries to steal my phone charger. I demand it back.
I am given two blood transfusions. At this exact point, I start to feel better.
Surgeon feels that it will heal faster if certain pressures are set on chest drains. This appears to improve things but the noise of the motor on the drain is what I remember.
Massive issues with getting the cannulas to stay in my arms (too hairy, apparently), meant I was not getting morphine. I had a night of pain.
Jan 20th
Still in HDU
Air leak is not healing beyond a certain point. Every time I go to the toilet the air leak, which is measured on the chest drain, starts to come back. Cough up huge sticky lumps of bloodied material.
Start physio.
Jan 21st
Moved back to ward.
Too sick to go for x-rays, they have to do them in my bed.
In the night, one of the patients dies in agony of a heart attack. His wife comes in later and they tell her he didn’t suffer. He was a nice man, probably about 70. If you ever hear, ‘he didn’t suffer’ when someone dies, think carefully about believing it.
Jan 22nd
More monitoring, physio, and I have one of the two drains plus catheter removed.
Some signs of improvement.
I am managing to have showers etc. which is empowering.
They moved me from intravenous morphine to oral, and this really helped. My hairy hands and arms meant that it was difficult to get any plasters to stick and hold things in place.
During this whole time I could not bring myself to look at the wound. I was sort of in denial.
Jan 23rd
First mention of being discharged, but with a ‘flutter bag’ due to ongoing leak.
Cut my own hair. This surprises people. Start to get dressed every day. Go downstairs to vending machine for chocolate and tea.
Jan 24th
Manage to walk to the hospital shop. Bought some cheese, which is the one thing that no hospital meals seem to have. I was craving it.
Jan 25th
Manage to get to the hospital restaurant and have a cooked breakfast.
Moved to a different room a couple of times, this was a sign of things changing and them making plans for me to leave.
Surgeon confirms that he will send me home. We talk for an hour about things. He tells me what has actually happened. I had pneumonia, pleurisy, an abscess and empyema, which had turned to sepsis. He said I would have died around Jan 12th if they hadn’t have put the first drain in, he also tells me that it was still too late for me to recover fully – it was a close run thing that the infection didn’t spread to my heart and spine, and there could be lasting effects from having sepsis for over a month. The breathless episode on Dec 15th was likely to be a collapse of the lung. The sputum after the chiropractor visit will be because the chiropractor burst an abscess. In the end they drained more than 5 litres of pus from my chest. He also tells me that I have hemidiaphragmatic palsy – my left diaphragm isn’t working fully, sometimes caused by neck issues/whiplash, or a stroke. It could be either of these in my case but there is no way of knowing, plus it is rare to have sepsis for as long as I had it, and this may have caused some paralysis of the diaphragm also. It usually goes with time. Could have been caused by the odd neck crack late the previous year.
Flutter bag attached. These things allow fluid and air to drain from the chest.
Jan 26th
Home in the evening. I feel like I have died and that this is all a dream. Minnie the cat is delighted to see me and paddles me for two hours, purring loudly. She looks at the flutter bag and looks back at me a couple of times, somehow she knows. Dylan the kitten – has to be kept away from the bag. My wife has people around and continues to entertain them even though I’ve been away for weeks, and in any case I just want to be in bed with a cup of tea. They are relatives and are dealing with the aftermath of her Nan’s funeral, which has been overarching a lot of what’s gone on.
Jan 29th
Visit my actual GP for the first time in years. He looks at my notes and goes white, shaking his head. Does not speak for several minutes. I complain that things have been missed and he agrees. 2 weeks later he announces his early retirement. One of the other doctors is gone from the practice shortly after. I do not take this matter any further as I have seen first hand how stretched the NHS is. However I am in no doubt that the GP practice was negligent and did not take it seriously, the number of times I was given antibiotics was clearly wrong. The nurse in early January is probably the person who saved my life in the end, when she sent me to hospital.
I am told that my life expectancy is reduced and that I have to make changes, and not expect myself to get back to where I was – endless travelling, London twice a week, etc.
I am signed off for a month. Probably it should have been longer.
Feb 15th
Bag removed.
Feb 26th
Dressings removed
I thank the surgeon publicly for what he has done to save my life (on LinkedIN). We stay in touch.
March 1st
Back to work, but remotely and with limited hours and duties. The company is as understanding as it can be, in all honesty it’s probably hard for anyone to imagine how sick I’ve actually been.
I am breathless a lot and need to sleep for two hours in the middle of most days for a while.
May 1st
First time back in the London office. Everyone is pleased to see me. From this point I only go once a month on average.
TIME PASSES…
Things don’t really go back to normal. I am not engaged at work and eventually change roles, I even talked about possibly taking redundancy. Less travel but I am a bit adrift. I cannot let go of what happened. I realise that I didn’t get a diagnosis given to me until after the cure. I didn’t realise why I was surrounded by people with sepsis… That’s because I had it. They didn’t tell me because I was so nervous about being in hospital.
I have cognitive issues. I’m slow, forgetful and confused quite often. I don’t see things right in front of my eyes.
I started to associate my iPhone with being in hospital, since I was glued to it most of the time. So I swap it for something different to try and break the association.
Towards the end of the year I start to push myself back to how I used to be, however my mind and body just aren’t up to it. I have not really accepted the new reality. I have PTSD.
Dec/Jan
Difficult time as I was reliving things somehow a year after. Stuff kept coming back. Terrified of getting sick; start to see news of coronavirus & start wearing masks and isolating. I continue counselling for PTSD.
Feb 2020
Find the underlying cause. I have MGUS, which causes immune problems and may eventually lead to Multiple Myeloma. This will have caused the year of sickness before the final sepsis. I can trace back the possible start of this to 2008. It seems that the version of MGUS that I have is one that can flare up, and might cause sporadic weakness in the bones, with back and neck problems probably coming from that.
September 2021
It took some time for me to understand that MGUS is serious and will be with me in the background all the time; I just have to hope it doesn’t go into the foreground. I had some pain issues that were debilitating for a while and I am taking opioids again. I am gradually understanding that this is something that I have to live with. It’s called Post Thoracotomy Syndrome. I have syndromes now.
I’ve been in limbo due to COVID as well, and even watching news and hearing about long COVID has made me a bit angry, these long term effects of illness can happen to anyone who gets severely ill. Perhaps there’s a silver lining for those out there with ME/CFS and similar, that society now understands that this is a real thing and not just in the mind.
The moral of the story is: if you are sick, and you know you are sick, don’t let anyone, or society, tell you that you aren’t. Only you know how you feel. It’s on you to explain it to people. I’m doing this now after it all happened. Ideally, if any of this happens to you, you will explain your pain in great detail and get treatment. I saw the worst and the best of the NHS; the lack of experience of doctors prevented my getting the right treatment (also one doctor missed that two of my drugs didn’t work well together), and then the most incredible surgeon saved my life and the genuine care of the people that put my back together is something to behold. I should also add, plenty of the life-savers were people that might be vilified as immigrants by the right-wing. I was never of that mindset anyway, but if ever there was an illustration of the benefits, it’s talented surgeons and doctors from all over the world that answer their calling despite the hostility from people who have never needed their help. Not yet…
I should have stood up for myself around the start of 2018 and carried on shouting until I was cured. I had no vocabulary for how I felt. I have one now. You should all stay away from the hustle culture, of working harder, pushing through things. You really owe it to yourself to be sick properly, stay in bed, don’t come out until you’re ready.
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The “Hustle Culture” is one of the great evils of late 20th-21st Century Western Society.
Be sensible and resist it.
It really is. The most obvious aspect of it, where LinkedIn wants everyone to be like Elon Musk, is ignorable. However the ‘push on through’ part is seeping into everyday life. That has to be resisted.
Sorry to hear of your health problems, hope it can now be managed reasonably.
I think Covid could actually change things, people will now stay home from the office when even a little sick. And my (US) company has been having “recharge” days where everyone is encouraged to take the same day off, normally making a 3 day weekend into a 4 day one. Idea being that one doesn’t feel guilty or worried about dozens of emails to answer on return.
Also I do a stressful job and a recent heart attack for a colleague has had me working less hours (now only about 50 hrs a week), and as we are understaffed things are just going to take more time
I do agree that the bright side of Covid-19 (if there can really be such a thing) will be a reevaluation of health vs. work.
Incredible post Leffe, thanks for writing it.
Still in 2021 blokes are not allowed to be ill. Man-flu, man-up, grow a pair etc. If someone else is ill at the same time you’re basically completely on your own with it.
Good luck out there chaps.
Thanks for this- I’m managing day by day. Certainly not working as hard. My employer is good in this regard, they let me do things my way now.
I think it was important to list all the details in my post, as it shows just how many bad decisions can be made.
Blimey Leffe, what a sobering read. Hope you can learn to cope with managing everything and live as well as you can.
How I hate the stop snivelling and get back to work culture we now seem to be lumbered with. When did work become something that rules your life?
I think that the culture in the UK has always been a bit work-centric, at least as long as I can remember. What’s the first thing you ask someone at a party? ‘What do you do?’
However the competitive workaholism is since the rise of the Silicon Valley libertarians.
Gee Whiz Leffe Gin – Your story puts my Revenging Gall Bladder way behind the goal posts – It is amazing that you are still with us – here’s hoping you are for many more years to come, especially post Covid. Your positive attitude towards it all will see you through it.
One of my mantras is/has always been take care of yourself FIRST & that way you are looking after all those/that are dear to you – it may seem selfish BUT if you’re not look at what the “consequences” could be.
P.S. after 2 episodes of RBG in 4 months(mass evacuations of liquids/materials) seen my Dr. for blood tests & ultra sound (not pregnant) have gall stones – a very tiny tiny irritation compared to your ailments. Have yet to revisit Dr. to determine course of action. Possible Gall Bladder removal.
Anyhow Mate stay safe & Covid free.
That sounds also very unpleasant. I think your mantra is right.
Crikey, what a sobering story. I hope things are improving for you Leffe. ‘Look after yourself’ kinda goes without saying.
I certainly will! My hope is that everyone else looks after themselves too.
Words fail me. I guess the positive here is that thankfully you’re still amongst us. Praise be for that. Keep it that way there’s a good chap. 🙏
Thanks. Many people here have of course also gone through a lot. We owe it to each other to be open.
Bloody hell, that was an absolute rollercoaster to read; god only knows what it was like to live through.
I hope things are on the up from here, and thank you for sharing your story: it really is a timely reminder of the risks and limitations of always trying to keep on going.
Thanks, yes that was my intention. We are entering the ‘being ill’ season. Also, it’s the end of September, which is Sepsis awareness month, and this is me doing my bit for that to some extent. At least I have a story to tell, so it’s my duty to tell it.
Good grief Leffe. Words fail me in saying how awful that is. I can only hope you are on the road to some sort of recovery, and thanks for the point about not “Manning up”. I used to suck stress up and power through ( fill in cliche here) but I’ve come to recognise I don’t cope with it like I used to and suffer from sleepless nights, irrational anxiety etc. Hence my thread about pushing the button and retiring, or at least giving up the high pressure business job. The thread here helped enormously and I am awaiting a decent and delayed bonus which I suspect will be handy in a post-work world plus I’ve flipping earned it so I want it. But I’m expecting to push the button within weeks and devote myself to unimportant but pleasurable activities. Life is too short.
Be well amigo.
One plus point of all this, is that I now sleep like a baby. I am probably catching up on years of missed sleep.
Hi Leffe – I guess half the battle is finding out what the hell is going on, after misinformation/no information: and it’s good to hear that you’re heading in the right direction. All the best, mate.
I recognise the different elements of your NHS journey, from life-saving to caring to indifferent to ignorant or dangerous – and the mixed joy of being in an open ward! Poor communication seems to be common and that can cause some nasty shocks down the line. When the NHS is good, it can be truly remarkable – hard to know how to eliminate some the variability in quality, communication, empathy, etc, when you can see staff on the same pay and grade with completely different approaches to their patients.
Less than 1% of the people involved let me down. The good greatly outnumbered the bad. I have had apologies. I have to accept that much of this is my own failure to listen to my body.
Blimey, you have been through the mill. I am pleased to hear that you seem to be on the mend, and also very impressed that you seem to have documented the whole story in such detail whilst going through it.
I had a similar story with what turned out to be prostate cancer. I saw 4 GPs at the practice before one (actually ‘my’ GP) referred me to a specialist. He read the notes and I could tell he thought I was making a bit of a fuss – he did the old finger up the rear test and couldn’t detect anything (apparantly the prostate feels rougher to the touch if it is cancerous), but said it was a bit enlarged so sent me for an MRI scan ‘just in case’. Guess what, I had a tumour on the front which couldn’t be detected by a physical exam. The subsequent biopsy confirmed it was cancer, but quite a low grade thankfully. They removed the blighter a couple of months later and I’m now fine over 3 years on. I tell everyone – persist if you feel something isn’t right.
Thanks for reinforcing the message. Everyone has to learn this.
Fuck me, @leffe-gin, what an epic saga! I would have turned my face to the wall long ago, I think. Congratulations to you for keeping on keeping on, though since nobody was really taking you seriously until it was almost too late, I’m not sure you had a lot of choice. All that work travel though!
I’m glad I kept a diary.
Remarkable documentation of it all. Well done in still being here.
Classic boiled frog syndrome. You get sicker and that new level of sickness becomes the new normal until you get sicker again. That has happened to me a few times with bronchitis/asthma. And people around you become accustomed to your unwellness.
Lots of travel, installing a bay window, having to make staff redundant – sounds like your role was reasonably senior. Why would you have to rely on the NHS? Could you not get tests off your own bat or be treated in a private hospital? Genuine question as I don’t know how things work in the UK.
re. the private healthcare thing. Good question to say the least. Yes, I do have this. The problem was, it wasn’t until I was too sick and in an NHS hospital that I realised I could have done things differently earlier on, but I’d have needed to understand in my own head that I was that sick to take advantage of it.
The person who did my operation is one of only a small handful who could do it in the UK, and in any case, most private hospitals don’t have an intensive care or HDU I think. Once I was there, I was there. It would have almost certainly been the same surgeon.
Since that time obviously I have taken advantage of my private cover as much as I can.
Also ‘boiled frog syndrome’ – never heard that before, but it describes it perfectly.
8 years ago my health was deteriorating gradually because of an effect of combining 2 medications that caused me to not generate enough blood cells. It happened so gradually that I got used to it. At that time I was getting the bus to work and found that i could hardly walk 50 meters if it was slightly uphill. So I chose the next bus stop on if it meant I could then walk downhill. Gradually getting weaker and weaker and just living with it, 3 hour naps instead of 20 minutes. Finally one day felt so bad I called an ambulance. Ended up needing 3 emergency blood transfusions after my white blood cell count was the lowest the nurse had seen in 40 years, Christmas in hospital (no Noel’s presents), but a gradual recovery within a couple of months.
I had private health cover when I was working, but your first point of contact is still your GP who has to refer you, so the problem is essentially the same. The difference I noticed was jumping the NHS queue once your GP said you needed treatment or tests. I had a couple of endoscopic exams years ago and the one in the Nuffield was like being in a posh hotel…private room and all that. It was a bit weird to be honest.
I tried to get tested recently and despite trying repeatedly couldn’t get through to the surgery so in the end I wrote a letter to the doctor reminding him of my family background (basically cancer everywhere) and can I have a blood test please. I immediately got an appointment, all clear, happy days. There’s something badly wrong if you have to resort to hand written appeals through the door to get a response.
My latest blood test (regular check for myeloma) was cancelled due to shortages of glass phials. I’m waiting to hear back for a new date.
Right. Remarkable to have documented those symptoms and not conclude how sick you are. But I guess that is the lesson the story.
In Oz it is the same. The best emergency treatment is in public hospitals and, as you say, once you are there, you are there. Public hospitals often see a wider range of ailments too – it is just getting access to those skills.
At the time I was convincing myself that I’d be ok despite the evidence. I was incredibly stupid.
One last question Mr Gin, if I may. I’d like to take you back to Jan 19, in the morning. 9 am when you were due for surgery. You said you discussed music with the surgeon. That’s correct isn’t it? Now this is very important Mr Gin, what music were you discussing?
I thought that.
My own. I compose music.
Obviously not my main job, which is marketing.
The surgeon (now a good friend) is a part time inventor. He’s a genius.
So…give….
I don’t want to expose my real identity if that’s ok. At least not in public.
Also not some cheap ploy to draw attention to my second rate ambient music.
You are Brian Eno and I claim my five pounds.
Rumbled
Also: congratulations on naming yourself after two of my favourite tipples. A man of taste.
Also after Jeff Lynne.
So probably not a man of taste after all…
Oh come now…
I was taking you seriously until the Jeff Lynne admission.
I wish you the best possible health.
I like Jeff but I also think he’s ridiculous. He has talent that he doesn’t harness very well.
Leffe. An incredible, incredible tale of incompetence, woe, resilience and determination.
Life affirming that at the moment in a more positive place.
My own tale initially was a brother, in 2018, who was told by NHS hospital he was dehydrated and ti go home drink and parecetemol. Unfortunately it was a brain tumour.
I had a small suspicious lump in April. Could I breach the GPs barriers to get a consultation. No. Lines closed after 10 minutes. Eventually prescribed antibiotics (in fairness may have been an insect bite but no one had SEEN me). More delays, referrals not processed. Eventually large cancerous tumour (SCC) removed and now waiting CT scan to see if spread. Am I anxious. You bet but I try to not over speculate.
What is the message? Leffe’s. You need to push early, push hard. If I had been seen, earlier, can’t help but think I would be in a better place now.
This last 18 months had been a bugger to be ill.
Take care all.
Yes. Believe your own feelings. Men are trained not to have any. We have to learn to stand up for ourselves. We have to learn to listen to ourselves. We have to push to get help and not be fobbed off with man flu. I wish you well. Do what you must!
What everyone else has said. That’s a powerful read. Hope things improve now you know what you’ve got and can address it. Your point about blokes especially not wanting to admit they may have a problem, or even ask the preventative question, is still true (guilty as charged – so far as I know my health is fine but I tend to be happy to live in blissful ignorance as to whether that is definitively the case or not). And sadly your challenges with getting effective diagnosis and treatment seems all too common these days. There are real questions to ask about healthcare in this country which have to go beyond ‘our NHS is brilliant (which it often is, but not always) – leave it alone’.
Thanks for the post.
The problem starts with us. We are not ‘fine’. We just think we should say we are.
Some practical advice for you all. If you’re on Lansoprazole, as many of a certain age are, make sure your doc checks before he prescribes bog standard antibiotics. They don’t work as well.
Which ones are affected, in your experience? I’m only aware of antifungal drugs and one or two antiretrovirals being affected – none of them are bog standard…
I’m trying to find it in my notes/diary.
Less effective, perhaps, in theory as, by having less stomach acid in your stomach, absorption of some medications might be slower. Very variable in practice. Certainly a worry when the class of drugs first came out, forty years ago, as was a worry they would bring about vitamin deficiencies for similar reasons, from food, or by affecting intrinsic factor, which allows Vic B12 to be taken in. Strangely never seems much to be a concern. (DOI, on omeprazole, a similar, med for 30 years)
Relatively few medicines are absorbed through the stomach wall – most need to travel further down! Some (like old-fashioned penicillin) are damaged by stomach acid, so theoretically might last longer if you’re taking lansoprazole. H. pylori eradication requires taking lansoprazole with a cocktail of common antibiotics – not rendered ineffective by taking them together.
Apologies – I seem to have pharmacy Tourette’s this morning…
Indeed, looking back through my medical notes from this period (67 pages) I can’t seem to find it, it’s only in my own diary. I think the concern was that Lansoprazole was blocking Amoxicillin, which might have been incorrect based on what you are saying.
Clearly I have an ‘interest’ in this sort of tale. Cut to the quick, unintentional weight loss is never normal. And don’t take otherwise any reassurance it is.
Yep.
Agreed. That’s when I was finally referred for a colonoscopy by a recently-qualified locum GP (my usual GP was on holiday). I’d gone from nearly 11 stone to just over 8 stone in a few weeks. My cheeks were hollow and my ribs poked through my skin. There is family history of Colitis. But nobody had put two and two together. Boiled frog syndrome.
*** squeamish alert – look away now ***
Locum GP: “So, how long have you had blood in your stools?”
Me: “Oh, probably four or five years”
LGP: “WHAT? FIVE YEARS! WHY?”
*** and relax ***
I also recognise the knock-on Syndromes (I spent a couple of years having everythig else tested, including a Bone Density scan, 40+ years of inefficient intestines means I eat chalk every day now to avoid osteoperosis). The health service sometimes feels like a prison, and you keep being refused parole.
Also: having seen my 18-y-o daughter having a spontaneous pneumothorax, and subsequent lung surgery, I’m amazed you kept going as long as you did. She really struggled for three or four months on one lung – and she’s young, fit and healthy.
That’s certainly very similar. 5 years suffering that without diagnosis though… oooof. A spontaneous pneumothorax at 18 is no fun, hard to imagine how that happens, but it does.
I always stayed relatively fit, but I don’t think it helps with some things. I am trying to figure out a new balance even now.
I’ve had nearly 10 years to get used to my diagnosis. I have accepted that, even though I’m healthier at 51 than I was at 41 (or, even, at 31) there are things I can no longer do. To attempt them I’d just make myself ill, it simply is not worth it. I get very tired, even though my Crohn’s is under control.
Occasionally I eat something containing, say, onion and have a two or three day relapse. I feel awful and wonder how I ever coped. Boiled frog syndrome.
My stretchy skin seems to be the result of Ehlers-Danlos syndrome. Daughter’s lungs seem to be made of the same stuff. She’s been told never to go scuba diving. No great loss – I’ve only been once, on the Great Barrier Reef and, given my dodgy guts and complicated dietary requirements, probably won’t be going back. She doesn’t even much like swimming.
Sadly, the main issue that you both describe is the fundamental error of the clinician failing to listen and failing to read the record of earlier consultations, both in my land of GP and in hospital. The answer or the clues are always there if you let the wretched patient tell you, rather than rushing them through to the sound of your own voice and otherwise imperfectly drawn conclusion. And if they haven’t told you, you can bet they’ve told a colleague another time. Who may even, if unwittingly, recorded it. If sometimes comes back time and time again, it isn’t because they are a nuisance, it is because you haven’t yet sussed their problem.
Agreed. I was lucky – the locum GP had just qualified… in the gastroenterology dept of the local hospital. I ticked all of his boxes.
My actual GP, who saw me after the hospital as mentioned above, was shocked and he said much what you said. The staff who saw me didn’t listen and didn’t consult notes.
Bloody hell, Leffe. What a read. I hope things improve and are as manageable as can be expected, though that seems a glib thing to say.
Hardly the salient point here, but that post was so engagingly and horrifyingly well-written. It reminded me forcibly of something I’ve only realised properly in the last 18 months: our bodies are us. We are them.
Stay well, old chap.
Our bodies are us. Exactly. We sometimes forget that we need something to carry our brain around in!
Sheesh …
“I’ve got toothache” hardly compares
Sounds like you’ve been through the wringer (and back again).
I take my hat off to you for sharing, and reminding us to look after ourselves and others.
Which reminds me … I never did book that follow-up appointment with my GP
(me right ear cleared after about 6 months)
Not giving up smoking and drinking though …
It’s amazing how we keep adapting to the new norm and re-baselining ourselves as we get sicker. My father passed away last year from leukemia, eight weeks after he was diagnosed on a routine, annual blood test. The docs couldn’t believe he was walking, his white and red cell counts were so low. Within a week of the diagnosis he wasn’t. After the diagnosis, he said that he thought he’d been lacking a bit of energy lately and that he’d been feeling a bit more tired than usual, but he put it down to old age. Didn’t stop him going for a walk every day and the gym three times each week up until the diagnosis.
I often wonder how much longer he would have carried on if he hadn’t had that routine blood test. Once he was diagnosed and had a reason for his tiredness, he deteriorated rapidly (within days). I guess it cuts both ways, because if he had been diagnosed several months earlier, I have no doubt he would have passed away with similar rapidity.
The mind is a funny old thing.
People in reasonable health (for their age) do that as a matter of course.
Your minor everyday aches and pains fade into the background as you become used to them. Some quite major ones can too.
I was in a nasty car accident* in the early ’80s that involved a whiplash which left me with problems with working above head level (not good for an Electrician) and persistent lower back pain. I gritted my teeth and soldiered on because I needed to work and earn.
By the time I retired in 2016 my neck and lower back were no longer troubling me much. I doubt the damage had mysteriously healed, I just got used to a certain level of pain from those areas and my nervous system no longer paid it any attention.
*A friend took a bend too fast in his old VW Beetle, it spun in the road and hit a telegraph pole (destroying it) while travelling backwards, before going through a fence and rolling over several times down a sloping field. Good job it hit the telegraph pole travelling backwards, as neither of us were wearing seatbelts. His 3-year-old daughter, who was in the back also un-seatbelted was thrown out of the back window as it hit the pole. Luckily the whole window popped out instead of smashing and she landed on the grass verge by the roadside with no injuries apart from a big lump on her head.
The first sentence is a good description of what happened with me. You get a little bit sicker every day, and don’t notice the overall decline. It seems obvious that I was very sick the way I wrote this, but the day-to-day reality was a bit more nuanced I think. Although I was incredibly stupid overall, of course.
Stories like this one, and the fates of a few people close to me, makes me also draw the conclusion that – even if you do think there’s something wrong and do ask for help – a lot hinges on those first contacts within the health care system. If they start off on the wrong foot and your problems are ignored, misdiagnosed or minimized, chances are that the next doctor you see, and the next etc, will go along with their colleagues and it will take a very long time to get the correct help.
My dad’s second wife died unnecessary of cancer after years of going to the doctor feeling very ill, and all they kept telling her was “well, it’s definitely not cancer” (without testing for cancer) and throwing antibiotics at her. Even when she was so ill that she was hospitalised, they first quarantined her, claiming that what she suffered from was some rare parasite caught from animals.! When they finally checked for cancer, it was of course way too late.
My best friend’s daughter has been seriously ill for years, and is seen as a nuisance every time she turns up at the A&E (after not being able to keep any food down for a week and severely dehydrated). They’ve seen on x-rays that she has some metal object in her intestines that shouldn’t be there, and her problems all started after having surgery in that area, but they claim that this mystery object isn’t a problem and refuse to remove it…! Meanwhile, my friend has had to take over as caregiver to her grandchild, because her daughter is too weak to take proper care of her (having special needs). If you didn’t know her story and met her in the street, you’d assume she is a junkie; she’s all skin and bones and the veins in her arms are all f-ed up from all of the hospital trips, getting drips etc.
Her case has entered a medical Limbo due to a lot of prestige, her original surgeons not wanting to take any blame so claiming that there’s nothing wrong with her, when she in reality is bedridden and barely able to get any nourishment down (and to stay down…) It’s a neverending mess.
But other friends and family (most people, thankfully) have been lucky to get taken seriously from the start, and then it’s pretty smooth sailing from start to finish, and everybody are doing a great job fixing their problems as fast as possible.
I’m glad they got there in the end and saved your life, too bad it took so long and left you with so many problems. But you seem to have a stubborn streak – time to use it to work on your health and strength, rather than wasting it on work BS! Good luck!
I think you’re right about first contacts. If I go right back to sudden onset of arthritis, there should have been blood tests there, and they would have found MGUS/smouldering Myeloma I reckon. Easy to say that now, but it seems my body has been suffering from a version of this that peaks sometimes and lies almost dormant the rest of the time.
Your last sentence “time to use it to work on your health and strength, rather than wasting it on work BS” – I need to print that out and tape it to my monitor in my home office.
What a harrowing story. Thanks so much for documenting it so brilliantly.
Lessons there for all of us.
I wish you the best of possible health from here on in.
Many thanks! I hope it helps people.
My Dad died of a Guillame Barre disease variant. A nastier variant.
A recalcitrant when it came to Doctors – they just want to find something and a don’t tell them anything attitude plus a lax GP meant it went undiagnosed/misdiagnosed for years. Towards the end they were giving him transfusions worth $10k a pop (on NHS) to little effect.
Died at 84 , fully alert, smart but body packing it in from toes up til it got him. Could have been managed if diagnosed correctly early.
It’s sad that there are so many similar stories. I’m sorry to hear this.
If you have a good doctor, you’re sorted. A bad one and you’re up shit creek.
I had a GP who sent me for X rays in 2014. Couldn’t find a thing wrong with me and sent me for physio, which involved a great dewal of dry needling in a very sensitive are of the body. They thank God realized there was nothing they could do and sent me to a different doctor. One surgery later…
Then, three years later, I went to see a new pulmonoligist. I found I was struggling a bit to get round the field, and maybe I needed a review of my meds. He does the usual testing and then inserts the throwaway line “but at least the collapsed lung is improving”
The what now? Yes, apparently , clear as day in my earlier x ray, there was a 3/4 collapsed lung that was gradually improving over time. Was I happy? I was not happy. I just thought I wasn’t fit enough. Instead it turns out I may have been overdoing for a while.
I’m a bit more judicious about my medical providers now!
That is incredible – obviously I can identify with some of it. How can that be missed, given that they even did the x-ray? Collapsed lung is pretty easy to spot.
Sounds to me like they spotted it, they just didn’t feel any need to tell the patient about it.
Which is even weirder… really strange…
That was my concern (further upthread) about poor communication…patient not being given the full picture…
No, she missed it. She was looking lower down the x ray for a hernia and didn’t pay any attention to the lungs.
A different doc spotted it and just mentioned it in a “ohm yeah, well, that thing you OBVIOUSLY know about…”
Doesn’t this happen a lot? Doctors miss stuff because they’re totally focussed on something else? It’s like being told you should only go to your GP with one problem at a time. Mrs Moose cheerfully ignores this.
This is where I recommend a read of Ben Watt’s excellent book, Patient.
That’s a good shout. I also read Michael Rosen’s book of poetry about him having Covid. That was very reassuring, like a warm hug.
I was thinking that. Very similar story.
Bloody hell Leftie. That’s a tale and a half. I’m from the old school work wise, keep going till you drop but learned my lesson through some mental health issues I’ve shared here. There’s no way I could have kept going with your symptoms I would have crashed in Jan 2018. The lessons to us all are clear. The NHS? I had kidney stones in March hospitalised for 3 days and I’m fine. However 4 follow up phone call consultations all cancelled mean I haven’t spoken to a soul since. As I say I’m fine but if I wasn’t?? Always had lower back pain, I’m a lanky git. Got worse in the summer finally phoned a Dr who asked lots of questions which lead to a phone consultation with a physio!! More questions and a promise of an exercise programme via email which has never arrived. Again, I’m fine but what if? Covid has put some, not all, GP’s behind a wall in my experience and I’m not alone by some of the replies here. It’s a wall they are choosing to keep erected. Another consequence of that bloody disease. I can only imagine the cost in health terms. Keep well everyone, badger that receptionist and don’t accept “no appointments but I can get a Dr to call you”
To be clear, although I’m sure the NHS could have done better, the fault is mine. I should have said exactly how sick I was feeling but lacked the emotional vocabulary to do so. It’s the other side of toxic masculinity; we are undoubtedly a threat to women, and to ourselves. I was a fool.
You weren’t a fool, you were just normal. Getting the right treatment shouldn’t depend on how articulate or even “pushy” you are: too many times it does.
I work almost exclusively with men but it’s a very non-macho environment. Still there’s a temptation to keep going. I’ve done it myself, with me, I think it’s more a matter of not wanting to let anyone down. I’m hoping that the new hybrid working ways (at least in the company I work for) will mean that more people will be encouraged to stay home when they’re infectious. If there’s an important meeting, instead of dragging ourselves into the office we can just joint the meeting online then go back to bed. Quite apart from people carrying on while sick, how many traffic accidents (and inevitable injuries) are there where someone was so under the weather that they shouldn’t have been behind the wheel? I would expect a lot of us have done it even if it was just driving home because you hadn’t realised quite how ill you were.
I also think the language of HR needs to change. I understand the reason that larger companies need to carry out and record regular one to one meetings between managers and staff but they always include words like ‘ambition’ and ‘aspiration’. It was ages until I was comfortable enough with the system to realise that it was OK not to have considered either of those things and that having some sort of (possibly unreasonable) ambition was not a requirement for doing a good job.
More than 30 years ago I went to see my father in hospital, where he been taken after collapsing in his choir practice. The reason was cellulitis (or possibly phlebitis, I forget which) which he had been suffering the symptoms of for a while in silence.
When I visited one of his brothers, my uncle Willie, was also there. As we chatted on the way out he sympathised with my father’s reaction, and said that so far as he was concerned, ‘If you can walk, you go to work!’
A couple of years later he developed testicular cancer and left it so long before seeking treatment that Willie had his balls removed.
That’s something I think on when deciding if I need to ‘bother’ the professionals about anything medical.
Ok gang, Lefty is on 94 comments. 95 after this
If anyone deserves to sit down to some Corsair chicken compliments of an AW hamper it’s Mr Gin.
Let’s bring this baby home.
Leffe, please. He’s named himself after a toothsome beverage – well, two actually – not a tiresome political category.
I have a PhD and Leffe Brun is literally what the doctor ordered. Salut!
I like Lefty
Regards
Pancho
I’m at a loss on how to comment on Leffe’s OP apart from “bloody hell”.
I know quite a few of us on here have debilitating conditions, it took a long time to find out what I have as it’s such a rare condition, luckily one of the GPS I saw had been talking to a specialist in my condition and sent me for a checkup which confirmed I have Superficial Siderosis (blood on the surface of the brain). I’d been sent for physio which was of no use.
@Leffe-Gin I’d not noticed the Jeff Lynne spoonerism as I’d always thought Leffe was pronounced
Leff fi. Enjoy the hamper you deserve it.
One hundred posts. Mostly by me, but still.
You have to keep banging on before you get what you need – whether that’s medication or a hamper (if there’s a distinction)
I’ll need treatment if I eat the CORSAIR chicken.
This just in – Boris has mobilised the army to deliver your hamper.
Thanks for writing this.
All of us are probably going to have an experience we can relate to this at some time.
Its really good of you to share, and help us get our heads round it.
Thanks for this; I hope you don’t all experience anything like this, but of course it could happen to anyone. Be a friend to yourself and recognise the signs and your own limits.
Jesus. A harrowing read. Pleased you’re on the better side of the experience now and you remain so.
My wife fell ill on the last days of a holiday in Greece 2 years ago. After a traumatic flight home. I took her to see our GP who sent us to A&E immediately. Cue 2 weeks of fucking about by the medical staff while her colitis deteriorated until a close friend, a Head of Nursing elsewhere, came to see her. He demanded her notes and essentially tore some heads off until a consultant surgeon was assigned and – no hyperbole – saved her life.
First contact is vitally important. He’s still keen we raise a case against the hospital. I hadn’t a clue what to do to help escalate her care. Hardly anyone does.
I remember you writing about that at the time. Hope she made a full recovery.
Thanks DaveBP, not really. She’s invalid still but heading very slowly in the right direction now that a long awaited physiotherapy referral has paid some dividend.
She’s well in that she has returned to work and can drive again but her physical mobility is very limited. She perseveres and she will prevail.
Sorry to hear that Beezer. Best wishes to you all.