In Sickness and in Health

[mjmooney]

Partly triggered by the flu jab debate in General Chat, I felt like the health issue deserved a dedicated thread. Complain about your man flu, debate the economics of the NHS, discuss the latest in medical science, get diagnosed with VT AIDS, whatever. 

Starting off with... cancer. It's a grim topic, we've lost more than one VTer to it and it's taken several of my friends and relatives, but treatments and survival rates are incomparably better now than when I was a kid, and it was pretty much a death sentence. 

But that got me thinking about the whole public v. private healthcare debate. Are there any stats on cancer survival rates in the USA as compared to countries with publically funded healthcare? Because although it's now more treatable, those treatments are expensive. If you have cancer and money in the US, you're probably well placed to get the best care. But if you haven't got money? Breaking Bad was food for thought, but what's the reality like? Are cancer death rates in America significantly worse than (say) Europe? 

[HanoiVillan]

There's a couple of good charts provided by the Nuffield Trust, here:

https://www.nuffieldtrust.org.uk/resource/cancer-survival-rates

 . . . on the comparative survivability of different cancer types, plus some international comparison of 5-year survival rates in breast, cervical and colon cancers. 

As I understand it - and I'm not an expert, and very much open to correction - the US has very strong cancer survivability, which is achieved at phenomenal expense. Other countries with publicly-funded healthcare achieve similar rates at a lower cost (Scandinavian countries, Israel and Japan are the strongest here AIUI). The UK is towards the bottom of the European pack in general, though I believe that the numbers can be quite different depending on the type of cancer. 

[Chindie]

Yes, iirc the general view is that the US has quite poor value for money from it's healthcare system, but that it's generally very good. It's just that the obscene gap in cost there's not much difference in the care patients receive.

I seem to recall there's a few cancer types where the US has surprisingly poor survival rates on (and in fairness the same is true of the UK). I'd guess that might be lifestyle factors more in play?

[Chindie]

As for cancer...

My family has a generic disorder called FAP (fnarr). It causes the bowel to develop increased levels of polyps, small growths that everyone will get a few of in their lifetime. The disorder increases this significantly and in turn increases bowel cancer rates. The disorder almost certainly killed my grandfather, who died when my dad was just a teenager in the 60s. My dad was diagnosed with bowel cancer when I was only 13 or so, and had to have part of his bowel removed. My sister had to have the same done, as has one of her children. Thankfully I've been tested and I don't have the gene actively, I only carry it, meaning should I have children they would be at risk.

The condition probably lead to my dad dying a few years ago. That was something I don't think I would wish on anyone, and seeing him at the end was horrific. Leading up to it, bearing in mind my mom suddenly died a few months earlier, he went downhill rapidly, losing lots of weight, losing his mental capacity, losing control. A week before he died I went on a trip with him to buy something. He got lost. Clearing the house after he died we found notes he'd made. My dad had very distinct handwriting - practical notes in a very blocky uniform capitals, more formal stuff in a very intricate joined script, almost like he'd done it with a fountain pen or quill or something. The notes we found looked like they'd been written by someone with severe Parkinson's, wobbly jittery letters barely legible. A couple of weeks before he died he tried to fix the strap on my work bag, which had broken as I walked through the middle of Manchester. He couldn't hold a screwdriver. The frustration was clear as he tried to do something so simple.

We had to drag him to see someone in the end. The doctor basically said to him he was so unwell if he didn't go to hospital they would note he specifically refused. He never came out, and I think he knew he wouldn't. He'd given up after mom died.

On the day he died, we all were doing some errands he'd got set up. He called me while we were out that morning, to say he was going to be taken for an investigatory procedure. I said we'd see him later that afternoon. When my brother and I arrived he wasn't right. He wasn't paying attention, didn't seem able to follow the conversation and was in some discomfort. As we left we asked the nurse if he was ok, and they gave him a couple of paracetamol in a cup. He just sat there holding the cup. We went to see my sister afterwards, to tell her to expect him to be bad when she went in the evening.

That evening I got a text from my sister telling me to come to the hospital. When I got there he was basically gone. Still alive, but gone. He didn't respond to anything. Apparently one of the low level staff had told my sister to call family when he walked past. They moved him to his own room, and we stood there for hours, with him staring at the ceiling, not blinking, occasionally shaking his head or shifting his body, making this horrible grunting noises and breathing heavily. Occasionally we had to leave as they cleaned him up. They sent him for a scan, then we stood there for hours longer watching him deteriorate, while we waited for someone to see us. When they finally did they just told he was riddled with cancer and they didn't know if he'd be dead in hours or weeks. It was 3am at this point, we were all exhausted and mentally done, so made the decision we'd go home to get a few hours sleep, and return early in the morning. We'd watched Mom die a few months earlier and that was horrible.

He was dead when we got back, at 7. I'm still ashamed of that.

Edited January 4, 2019 by Chindie

[TheAuthority]

6 minutes ago, Chindie said:

As for cancer...

My family has a generic disorder called FAP (fnarr). It causes the bowel to develop increased levels of polyps, small growths that everyone will get a few of in their lifetime. The disorder increases this significantly and in turn increases bowel cancer rates. The disorder almost certainly killed my grandfather, who died when my dad was just a teenager in the 60s. My dad was diagnosed with bowel cancer when I was only 13 or so, and had to have part of his bowel removed. My sister had to have the same done, as has one of her children. Thankfully I've been tested and I don't have the gene actively, I only carry it, meaning should I have children they would be at risk.

The condition probably lead to my dad dying a few years ago. That was something I don't think I would wish on anyone, and seeing him at the end was horrific. Leading up to it, bearing in mind my mom suddenly died a few months earlier, he went downhill rapidly, losing lots of weight, losing his mental capacity, losing control. A week before he died I went on a trip with him to buy something. He got lost. Clearing the house after he died we found notes he'd made. My dad had very distinct handwriting - practical notes in a very blocky uniform capitals, more formal stuff in a very intricate joined script, almost like he'd done it with a fountain pen or quill or something. The notes we found looked like they'd been written by someone with severe Parkinson's, wobbly jittery letters barely legible. A couple of weeks before he died he tried to fix the strap on my work bag, which had broken as I walked through the middle of Manchester. He couldn't hold a screwdriver. The frustration was clear as he tried to do something so simple.

We had to drag him to see someone in the end. The doctor basically said to him he was so unwell if he didn't go to hospital they would note he specifically refused. He never came out, and I think he knew he wouldn't. He'd given up after mom died.

On the day he died, we all were doing some errands he'd got set up. He called me while we were out that morning, to say he was going to be taken for an investigatory procedure. I said we'd see him later that afternoon. When my brother and I arrived he wasn't right. He wasn't paying attention, didn't seem able to follow the conversation and was in some discomfort. As we left we asked the nurse if he was ok, and they gave him a couple of paracetamol in a cup. He just sat there holding the cup. We went to see my sister afterwards, to tell her to expect him to be bad when she went in the evening.

That evening I got a text from my sister telling me to come to the hospital. When I got there he was basically gone. Still alive, but gone. He didn't respond to anything. Apparently one of the low level staff had told my sister to call family when he walked past. They moved him to his own room, and we stood there for hours, with him staring at the ceiling, not blinking, occasionally shaking his head or shifting his body, making this horrible grunting noises and breathing heavily. Occasionally we had to leave as they cleaned him up. They sent him for a scan, then we stood there for hours longer watching him deteriorate, while we waited for someone to see us. When they finally did they just told he was riddled with cancer and they didn't know if he'd be dead in hours or weeks. It was 3am at this point, we were all exhausted and mentally done, so made the decision we'd go home to get a few hours sleep, and return early in the morning. We'd watched Mom die a few months earlier and that was horrible.

He was dead when we got back, at 7. I'm still ashamed of that.

Sorry to read that Chindie. Those experiences can be extremely traumatic. Don't be ashamed though, you did your best with the information you had.

[mjmooney]

What I meant was, if you're Joe Average with no money in the UK, and you get diagnosed with cancer, you go to the doctors, assume you'll get treatment, and hope you'll survive. But what if you're the same guy in the US? If you can't pay, is that the end of it - crawl off and die? 

[TheAuthority]

On the US thing, once you get on Medicade over here at 65 (if you can make it that far!) you can pay an extra monthly fee (which is not extortionate) of maybe $200/300 per month. This bumps into a really good health coverage plan. As the plans cover everyone over that age the prices that are negotiated by the government are really good and essentially any hospital in the country will treat you.

A very good friend of mine was diagnosed with lung cancer a few years ago. He didn't like his specialist in Florida so he decided to go to M.C. Anderson in Houston which is one of the best cancer treatment centers in the world. Now he could afford to fly there and stay in a hotel for all of his treatment but the point is that he never even saw a bill for everything including chemo and a surgery. 4 years clear now 

[TheAuthority]

2 minutes ago, mjmooney said:

What I meant was, if you're Joe Average with no money in the UK, and you get diagnosed with cancer, you go to the doctors, assume you'll get treatment, and hope you'll survive. But what if you're the same guy in the US? If you can't pay, is that the end of it - crawl off and die? 

So much of it is access to information. Knowing what your rights are and what you can and can't get and then demanding it. No-one is going to just give you free health care even if you are entitled to it. You have to fight for everything. Luckily my friend I mentioned above ran his wife's law office and they were both educated and smart enough to know what they were entitled to.

[Stevo985]

31 minutes ago, Chindie said:

As for cancer...

My family has a generic disorder called FAP (fnarr). It causes the bowel to develop increased levels of polyps, small growths that everyone will get a few of in their lifetime. The disorder increases this significantly and in turn increases bowel cancer rates. The disorder almost certainly killed my grandfather, who died when my dad was just a teenager in the 60s. My dad was diagnosed with bowel cancer when I was only 13 or so, and had to have part of his bowel removed. My sister had to have the same done, as has one of her children. Thankfully I've been tested and I don't have the gene actively, I only carry it, meaning should I have children they would be at risk.

The condition probably lead to my dad dying a few years ago. That was something I don't think I would wish on anyone, and seeing him at the end was horrific. Leading up to it, bearing in mind my mom suddenly died a few months earlier, he went downhill rapidly, losing lots of weight, losing his mental capacity, losing control. A week before he died I went on a trip with him to buy something. He got lost. Clearing the house after he died we found notes he'd made. My dad had very distinct handwriting - practical notes in a very blocky uniform capitals, more formal stuff in a very intricate joined script, almost like he'd done it with a fountain pen or quill or something. The notes we found looked like they'd been written by someone with severe Parkinson's, wobbly jittery letters barely legible. A couple of weeks before he died he tried to fix the strap on my work bag, which had broken as I walked through the middle of Manchester. He couldn't hold a screwdriver. The frustration was clear as he tried to do something so simple.

We had to drag him to see someone in the end. The doctor basically said to him he was so unwell if he didn't go to hospital they would note he specifically refused. He never came out, and I think he knew he wouldn't. He'd given up after mom died.

On the day he died, we all were doing some errands he'd got set up. He called me while we were out that morning, to say he was going to be taken for an investigatory procedure. I said we'd see him later that afternoon. When my brother and I arrived he wasn't right. He wasn't paying attention, didn't seem able to follow the conversation and was in some discomfort. As we left we asked the nurse if he was ok, and they gave him a couple of paracetamol in a cup. He just sat there holding the cup. We went to see my sister afterwards, to tell her to expect him to be bad when she went in the evening.

That evening I got a text from my sister telling me to come to the hospital. When I got there he was basically gone. Still alive, but gone. He didn't respond to anything. Apparently one of the low level staff had told my sister to call family when he walked past. They moved him to his own room, and we stood there for hours, with him staring at the ceiling, not blinking, occasionally shaking his head or shifting his body, making this horrible grunting noises and breathing heavily. Occasionally we had to leave as they cleaned him up. They sent him for a scan, then we stood there for hours longer watching him deteriorate, while we waited for someone to see us. When they finally did they just told he was riddled with cancer and they didn't know if he'd be dead in hours or weeks. It was 3am at this point, we were all exhausted and mentally done, so made the decision we'd go home to get a few hours sleep, and return early in the morning. We'd watched Mom die a few months earlier and that was horrible.

He was dead when we got back, at 7. I'm still ashamed of that.

My dad's passing was remarkably similar. His was bowel cancer, so that's probably why. 

The difference was he'd been diagnosed as terminal a couple of years earlier so we knew the end was coming, we just had no idea that it was coming when it did. 

Looking back I reckon my dad had been told by a doctor and he kept it from us. Little things he did, like he wouldn't buy a proper pair of glasses in the January because he said he might not need them very long. I asked him about the upcoming F1 season (he was obsessed with F1) and he showed no interest in it. That was due to start in March and he died the first week of March. It didn't register at the time but looking back I think he knew he didn't have long left.

In the end he'd had a painkilling injection in his back because he had terrible arse pain (there's no nicer way to put it!) meaning he could barely sit down. But it more or less paralysed him. So I went round on the Sunday to help out getting him to bed and stuff. Even then he was totally there mentally. You'd have no idea that he was that ill except for the not being able to walk very well thing. 

On the Wednesday night my mom called me and said I should come to see him the day after because he was "very poorly". I don't think it quite hit home but I knew something wasn't right. 

So went round on the Thursday to see him. Before I walked in my mom gave me another warning. "you should know... he's very ill". 
He was transformed. I'd seen him 4 days earlier and he'd seemed fine. Now he was completely changed. Sounds like your dad. He couldn't talk properly, he would drift off and not realise you were there. he couldn't hold a cup to his lips. It was like interacting with someone with brain damage. He'd noticeably lost weight because he hadn't eaten since the Sunday night.

We still hadn't been told by any medical professional but I knew the moment I saw him that that was it. It was happening.

From the Saturday morning he was pretty much unresponsive. He'd wake up every now and then and you could just about interact with him. But nothing more than a few words.

We stayed up on the Saturday night with him because we knew it was coming. Again remarkably similar to you I went to bed at 3am. I told everyone it was because I was falling asleep but if I'm honest, I didn't want to be there when it happened. I feel really guilty about that.

Again similar time, 7am ish. But the difference was my aunty who was staying with us woke me up and said I needed to go downstairs and he was just going. I held his hand, he was looking right at me but he wasn't seeing me, and in about a minute he was gone. 1 week from me being there and him seeming fine to him being dead.

I'm really glad, for him, that I was there when he went. I like that he was surrounded by his family even though I very much doubt he had any awareness of anything happening at that point. Or maybe I just hope that's the case.

But watching him go is the worst thing I have ever done. There is still a big selfish part of me that wishes I hadn't been there because that will haunt me forever. 

 

Cancer is a **** word removed. And even though my dad's passing was mercifully quick in the end and a lot of people suffer a lot more for a lot longer, it was still hell for everyone to go through. 

Edited January 4, 2019 by Stevo985

[sharkyvilla]

My Mum passed away last year from cancer, I've tried writing about it but I struggle.  She fought it on and off for about 20 years and the care she got at every stage all the way through to the St Catherine's Hospice nurses who nursed her along with my Dad in the final weeks at home was outstanding.  The thought of people in America not being able go get free healthcare just baffles me.

[This Could Be Rotterdam]

Not sure if anyone watched the recent Louis theroux documentary on assisted dying groups in the US but it was a fantastic watch. Harrowing and difficult at times but one of his best. 

[Xela]

Sorry for your losses @Chindie, @Stevo985, @sharkyvilla

Cancer is a word removed. 

VTers, cherish your heath while you have it. It's not until you start to lose it that you realise how important it is. I know that sounds obvious but its true. I suffer from a chronic bowel condition. It has a monumental impact on my daily life. I try to manage it the best I can and laugh it off on here with my toilet tales but the simple fact is my life is not the same as it was 5 years ago (before I had it). I have to plan everything now. and have a contingency plan if it all goes to shit (quite literally!). 

 

[rjw63]

My mom & dad went on holiday abroad back in 2016. When they got back Dad thought he'd been bitten by a mosquito, had a lump on his neck.

After a few weeks it was still there, so he went to his GP.

Turns out he had Non Hodgkins Lymphoma. My dad had never been seriously ill in all his 74 years, was extremely fit, walked the dogs twice  a day, played bowls 5 times a week. Didn't smoke or drink.

Worse thing was they told him it was an 80% cure rate. He died less than a year later.

I didn't write about it at the time as I didn't want to appear to be after sympathy. And I'm not now. I just find it annoying. Me and the wife miss him a lot, especially his comments on the Villa ("they were shit again!!").

[mjmooney]

Sorry if I've started a grim thread, guys. The bowel cancer situation does seem a little more optimistic nowadays. Over 60s like me get checked every two years - assuming we're willing to collect a few bits of shit and send them through the post. A running club friend of mine got an early diagnosis as a result, and it saved his life. He had to have a colostomy, with the associated bag - but to my surprise, he's since been able to have it reversed, and can now shit through his arse again and is living a normal life. Had it not been caught early, he'd have been dead by now. So some things are improving, for sure. 

Back on the US thing, my brother-in-law had a very good job with the US government (Arabic translator for the CIA), with the best health insurance available. But he had a series of serious illnesses, his cover basically got used up, and he ended up spending his life savings before he died. Leaving his missus (my wife's sister) pretty much broke. Not good. 

[Chindie]

Thanks for the thoughts. It's strange to think that its over 3 years since he went. I can still remember everything intensely. The same is true of my mom, although we were there for that through the whole thing. She died as a result of a rare complication of a basic procedure, so rare that I later saw a specialist myself and he actually knew about it happening to my mom, which probably wasn't helped by potentially a rare form of cancer.

Personally my own health isn't great. I had the blood clots in the lungs last year, which lead to me being told recently I'm probably looking at being on blood thinners for life. They don't know what has caused it. 

I've also got mental health issues. In the past 18 months I've been on a cavalcade of different drugs, including 3 months on a drug that had no effect but make me eat incessantly. I'm now fatter than I've ever been. I've taken more mental health questionnaires than I thought was possible and been asked more times than is healthy of I'm going to top myself.

The mental health issues stem from another condition that's ruined my life. Pathetically so. Since I was a teenager, around the time my dad into hospital the first time, a few months before my nan died, and around the same time my dog died, I've had very bad stomach issues. I can go from being fine to having an intensely bad stomach on the flip of a switch. That can range from discomfort to actual pain, to all of that plus an urgent need to get to a loo. The pain is rarer but it's been so bad I've been woken up on my sleep with a feeling like a knife is being dragged through my guts, to being on the loo nearly in tears with searing pain going through my intestines. It's dominated my life since it started. And in the last 18 months it's gotten so bad I've struggled to do anything. Literally. At it's worst I've not been able to go walking distances from the house because out of nowhere I can be unwell, and that in turn causes a viscious cycle where the anxiety about the problem makes it worse. Travelling is horrible. When I had to go to hospital for the clots in an ambulance, I was less worried about the fact I felt like I'd had a heart attack and more worried about my stomach playing up. Driving to work I was basically getting myself there through checkpoints more or less - get to here, then get to there, and as it got worse I often would get to a 'point of no return' on the journey and turn around and go home because my stomach was playing me up.

I've had every test going over the years, everything comes back negative. The best I've got is severe IBS, and/or severe anxiety disorder.

I used to pride myself on the fact very few people would ever know there was anything wrong with me. I used to go on client visits, I've travelled around London on my own for work more than once. Then in the last 18 months it's just got worse and worse, with no end in sight.

[PompeyVillan]

Well I gave blood again today for the third time. When I read stories like I have on this thread it breaks my heart and I wish that more that I could do. 

 

[mjmooney]

If it's any consolation, most historians now believe that Alfred the Great suffered with Crohn's disease. And he still managed to whip the Vikings. 

[Stevo985]

20 minutes ago, mjmooney said:

Sorry if I've started a grim thread, guys. The bowel cancer situation does seem a little more optimistic nowadays. Over 60s like me get checked every two years - assuming we're willing to collect a few bits of shit and send them through the post. A running club friend of mine got an early diagnosis as a result, and it saved his life. He had to have a colostomy, with the associated bag - but to my surprise, he's since been able to have it reversed, and can now shit through his arse again and is living a normal life. Had it not been caught early, he'd have been dead by now. So some things are improving, for sure. 

My dad got diagnosed very early, but he was one of the very unlucky ones in that the tumour was growing in a weird way which meant they couldn't operate on it. If it had been gorwing into the empty space of the bowel then he would have been ok. But it was growing sort of into his solid bits, in very layman terms.

The only option he got was to have his entire bowel removed with no guarantee that it would work. So he chose not to.

 

But you're right, the outlook is much better these days. Just need to get regularly checked.

[coda]

For those with bowel issues, have specialists ever mentioned faecal transplants?

[Demitri_C]

2 hours ago, Stevo985 said:

My dad's passing was remarkably similar. His was bowel cancer, so that's probably why. 

The difference was he'd been diagnosed as terminal a couple of years earlier so we knew the end was coming, we just had no idea that it was coming when it did. 

Looking back I reckon my dad had been told by a doctor and he kept it from us. Little things he did, like he wouldn't buy a proper pair of glasses in the January because he said he might not need them very long. I asked him about the upcoming F1 season (he was obsessed with F1) and he showed no interest in it. That was due to start in March and he died the first week of March. It didn't register at the time but looking back I think he knew he didn't have long left.

In the end he'd had a painkilling injection in his back because he had terrible arse pain (there's no nicer way to put it!) meaning he could barely sit down. But it more or less paralysed him. So I went round on the Sunday to help out getting him to bed and stuff. Even then he was totally there mentally. You'd have no idea that he was that ill except for the not being able to walk very well thing. 

On the Wednesday night my mom called me and said I should come to see him the day after because he was "very poorly". I don't think it quite hit home but I knew something wasn't right. 

So went round on the Thursday to see him. Before I walked in my mom gave me another warning. "you should know... he's very ill". 
He was transformed. I'd seen him 4 days earlier and he'd seemed fine. Now he was completely changed. Sounds like your dad. He couldn't talk properly, he would drift off and not realise you were there. he couldn't hold a cup to his lips. It was like interacting with someone with brain damage. He'd noticeably lost weight because he hadn't eaten since the Sunday night.

We still hadn't been told by any medical professional but I knew the moment I saw him that that was it. It was happening.

From the Saturday morning he was pretty much unresponsive. He'd wake up every now and then and you could just about interact with him. But nothing more than a few words.

We stayed up on the Saturday night with him because we knew it was coming. Again remarkably similar to you I went to bed at 3am. I told everyone it was because I was falling asleep but if I'm honest, I didn't want to be there when it happened. I feel really guilty about that.

Again similar time, 7am ish. But the difference was my aunty who was staying with us woke me up and said I needed to go downstairs and he was just going. I held his hand, he was looking right at me but he wasn't seeing me, and in about a minute he was gone. 1 week from me being there and him seeming fine to him being dead.

I'm really glad, for him, that I was there when he went. I like that he was surrounded by his family even though I very much doubt he had any awareness of anything happening at that point. Or maybe I just hope that's the case.

But watching him go is the worst thing I have ever done. There is still a big selfish part of me that wishes I hadn't been there because that will haunt me forever. 

 

Cancer is a **** word removed. And even though my dad's passing was mercifully quick in the end and a lot of people suffer a lot more for a lot longer, it was still hell for everyone to go through. 

**** me mate I ha da tear in my eye reading that