Whilst each illness is individual, the reasons for illness and the ways it affects us are related to the social conditions around us. Rather than starting from an individualistic position of ‘what have I done wrong?’, we should ask ‘what conditions in our lives make us sick or make us do things that are bad for our health?’ and start thinking how we can change these conditions together.
Understanding the diagnostic process and the treatment of illness is not just about having the right information. The sheer amount of contradictory information available is oppressive. Whilst each case has individual characteristics, we can come together in self-aid groups to discuss different sources of information for diagnosis and treatment together. It is not about blindly accepting what the doctor says, nor questioning the medical knowledge of doctors per se. It is about learning together how to interpret medical information and how to ask medical experts the right questions.
Most current self-aid groups belong to the charity and NGO sector. They may be helpful but are often not independent. Breast Cancer Care, a charity in the UK, receives a lot of money from the pharmaceutical industry. We don’t say their work cannot be supportive for patients, but we also need independent organisations run by patients themselves. Even within the state sector there are problems. A friend from Germany, who works as a nurse and had a recent cancer diagnosis, reported:
“In our case it is similar, a lot of cancer self-aid groups are run by professional charities. In my case it is still a bit more self-organised, given that the type of tumor is more rare. The local professor of the university clinic wants to open a new clinic on campus that is dedicated to this specific type of cancer. They need a certification for that and for that they need the self-aid structures and charities, because the collaboration with such kinds of organisations is now an official part of the certification process. So he said “let’s organise a patient day, these are the contact details of the responsible representative of a pharmaceutical company, he will be able to organise hotel rooms and food for the day…”. We just said “thanks, we don’t really need that, we can just use the rooms of the university clinic”. In the self-aid group we primarily collect and exchange information, also about who had what kind of experience with what doctors and we contact each other if we have any problems.”
We must bear in mind that resources and treatments have to be fought for. In many cases, without patient action, patients may face shutting of essential services. In 2022, a dialysis centre in Malta was threatened with closure. A group of dialysis patients threatened a fatal dialysis strike if this were to go ahead. Their strike threat was successful, and the centre remained open. That is of course a quite extreme example and hopefully most patient actions won’t have to go that far.
Patients are taking actions in all kinds of forms. One historic mass action was the struggle of HIV patients to attain affordable and effective medication in the 1980s. More recently, women protested the way that medical and political authorities compensated women who suffered from vaginal mesh implants. In many places sufferers of long-Covid get organised together. In Munich, midwives and pregnant women are currently fighting together against the closure of a local birthing centre. There are countless examples of resistance against cuts and closure of services.
The numbers of cancer cases are increasing, not ‘just’ amongst the elderly – latest studies show an increase of cancer cases amongst 25 to 49-year-olds in the UK by 24% between 1995 and 2019. In order to address this we need to understand what makes us sick. How is our food produced? Why is there no affordable public transport to reduce air pollution? Why are more and more people in debt and on precarious work contracts? Why is the number of people who say that they have few friends increasing? In the long run, we can only tackle these problems when we come together with other working class people.
In the shorter term we can come together as patients. For us, the self-organisation of working class patients is fundamental for any process of change within hospitals and the wider health sector. We need to foster new relationships of solidarity between health workers and patients that doesn’t reduce patients to objects or clients. Our aim is equal cooperation even if our medical position – i.e. one is in the position to care, the other needs care – and our levels of knowledge are different.
If you are a patient in one of the Bristol hospitals and want to share your experience or want to get organised with others, please feel free to get in touch. Below we feature the account of a friend who underwent cancer surgery and treatment in Bristol hospitals. We are grateful that he doesn’t mince his words…
I could talk for fucking hours. I’ve been in pretty good health. I’m 60 now. I haven’t had a lot of previous contact with health services for myself, mainly for my partner and for our boys. Then in January last year I found myself pissing blood, which was a bit spectacular and a bit terrifying. The GP check-up wasn’t good and I understand why that is, they are just overloaded. No one gets decent care because they’re trying to spread themselves thin. My GP surgery has 20,000 patients. So I rang up NHS 111 immediately and they said that it could be a kidney infection or a bladder infection, so keep your drinking water, don’t drink any alcohol, don’t drink any caffeinated drinks and call us back tomorrow if it’s worse. It didn’t get any better. So my partner took me to the local walk-in hospital which is ironically run by Sirona Care, a semi-private community health organisation. But the nurse there was really good and he did far more than what they talked over the phone. He said:” I’m going to refer you urgently to a GP for tomorrow and I’m going to give you some heavy duty antibiotics. They won’t harm you in any way, but they will start treating it as an infection.” So I saw the GP the next day, she was very young. I haven’t got a particular GP. I go to the local GP surgery and you see whatever doctor can see you. She was a bit vague and she said: “Well I’m going to refer you for a scan” and then the next day I was invited to see a consultant in urology who was okay, but a bit brusque. He was pretty quick and rapid and he said: “Look, what we need to do is get you in for a cystoscopy, which is where they put a camera into the bladder and we need to do a CT scan. And these two things are designed to rule out the worst possibility, which is cancer.” That was early January. The first week in February I had the CT scan. No problem with that. And I sat up on the bed and I said: “Okay, so what happens next?” And the radiologist said: “Look, if there’s anything bad, if there’s anything worrying, you’ll hear from us within two or three days. But if not, it might be two or three weeks.”
So as the weeks went by, one week, two weeks, three weeks I was thinking: “This is looking good.” And so at the end of that month, on the 28th of February, I went to my cystoscopy. I elected to have it on general anesthetic because a couple of mates I know had it through local anesthetic and they said it’s a very uncomfortable process. I told the doctor that she should look at my notes and my scan, as that was what the consultant had said I should do. And she came back white as a sheet and she said: “Look, can you sit down?” I thought this ain’t looking good. And, and she said: “You’ve got a large mass on your kidney.” And I’ve learned medical language a little bit since then so I said: “Are you saying it’s a tumor?” She said: “Yeah.” And I said: “Are you saying it’s a malignant tumor like cancer, or are you saying it’s a benign one?” She said: “It’s 15 centimeters big. I mean, it’s almost certainly a cancer. It’s not benign.” So that was a very bleak time. I mean, she was lovely to me. She was very gentle. She’s very kind. And she was in tears telling me. In retrospect, I can’t work out whether the tears were because she really felt for me or because she was thinking: “Fuck, somebody dropped the ball with the scan.” After this I thought: “I’m going to do one of those patient complaints, because you’re supposed to fasttrack me and somebody dropped the ball. And then I thought: “Well, actually the NHS is on its fucking knees and it’s got more managers than staff and blah, blah, blah. They know they fucked up. I could make a hoo-ha about it, but so what, I would not claim compensation. I mean, I haven’t died.” I think radiography dropped the ball, the scan didn’t get passed on within radiography. My understanding is that a scan like that rings alarm bells and you get brought into hospital straight away. They would probably have done further tests although they try to avoid kidney biopsies because they’re very invasive, but they’re also fucking painful.
The next thing that happened was I was referred to a urology consultant who’s a specialist in both kidneys and cancer. Not full of laughs and humor, but really super fucking clear. So because the junior doctors strike was kicking off, things were being delayed everywhere. So he rang me and he said: “I need you to understand and to give consent or not. You got big fucking cancer. I want to catch it and I want to make sure it hasn’t gone any further. Your cystoscopy shows it hasn’t spread to your bladder and that’s a really fucking good sign. You’re going to be quite a high priority with me.” I felt quite cold and a bit scared, more than a bit scared. And he said: “Look, what we want to do is to split you wide open.” It’s what they call a shark bite, because they go from just under your breastbone just on the bottom of your ribs down to your belly button and then across and open you up like that. And he said: That’s what I think will give us the best look at everything inside and the best way to remove everything and make sure nothing is left behind that could grow.” And I said: “Okay, let’s do that.” I think he made the right decision, but there was also no wiggle-room, no discussion. He was fairly caring, but he wasn’t giving me a cuddle over the phone. It was all business. But he sounded like a nice guy. He said: “Well, your other option is to die. This isn’t keyhole surgery. You can remove a kidney through a keyhole, but not with cancer, that’s just too risky, because we want to get everything out. And if it has spread anywhere else next door, we want to get that out, as well.” So a fairly Stalinist approach, but in retrospect definitely the right one. Perhaps with other medical conditions there are various ways to treat them and then this Stalinist way wouldn’t be the right approach. In general, if things are always done to you as a patient, if you are the object, rather than the subject, it leaves you disempowered, which is not good for your mental and physical health.
Surgery
So then a week later we went to see him in his office. He was really warm, welcoming. There was no question of being pushed for time. He showed us my scan and just magnified it up. We asked him a few questions and he said “I want to get you booked in for surgery as soon as I can, because the quicker we deal with it, the better.” It must have been some point around mid-March. So a couple of months since the referral from Sirona on the 8th of January. He also referred me to counseling specialists who work in urology who rang me up before and after surgery to check me out. They were lovely, they are trained to be, you can ask them anything. I then had my pre-op. They’re really nice and also very detailed. I didn’t expect that, like: “Have you ever taken drugs in your life?” I understand why, for anesthesia, it’s important. I understand that how you are physically can affect how they have to do surgery. They gave me a surgery date for after Easter. So we planned some day trips to see friends and so on. On the last Friday in March I got a call from an unknown number and by then I’d had lots of unknown number calls from the hospital, meaning, you can’t ring back. You can only ring the switchboard and they ask you: “Who do you want?” and you say “I don’t fucking know.” I think that’s a real problem for patients. If you get a call and you miss the call, unless you are left a voicemail. And it’s worrying because if you’ve got cancer, you want to know why you’re being called. So I just thought: “If they want to get hold of me, they will – because I was kind of getting used to the idea of having cancer by then. The first thing in the morning is the worst. In this house, in this family, I tend to get up first. So every morning I was having a coffee staring out the window: “Ah, I’ve got cancer.” Or a few minutes after getting up, you remember you’ve got cancer. Then one of the nurses rang me: “What are you doing tomorrow?” And I said something like “I’m snowboarding in Brazil, weirdly.”, And she said: “Can you come in? The surgeon is worried that your scheduled date in two or three weeks time is going to get fucked up by by the junior doctor strike and he’s found a slot and he wants you in tomorrow, at 7:30 in the mourning.” I went: “Fuck!”. That day was weird, but I wasn’t scared or worried. I thought I would be, but I wasn’t. I was to be nill-by-mouth from midnight, so we went out for a Turkish meal down the road and that was quite nice. In the morning they did all the tests and said: “Fuck me, your blood pressure’s high.” And I said: “I gonna have major surgery, are you surprised?! In the last 30 minutes I started shitting myself, because I’m really worried.” But apart from my partner there was no one really to talk to, about being shit-scared. Then Jack ‘The knife’ came in and marked me up with a marker pen, that’s now absolutely obligatory, laterality and all. And then the hospital gown, they are undignified, those hospital gowns, your arse is always going to stick out, and they look shit. Anyway, that’s just patient beef. So then I talk to this trio, the anesthetic team, who were just fucking weird. I mean, not unpleasant. There was a guy who was completely silent, like Chief Broom in ‘One Flew Over the Cuckoo’s Nest’. They said they are going to do it with an epidural. And I was beginning to feel a little more relaxed, maybe more de-stressed. There was no choice of anesthesia, but I have seen epidurals during the births of my kids. I guess I could have said no to the epidural, but they would have said: “We think you would be far more comfortable with one.” Because that’s the other word that they use in hospitals and they have to get over it. “Comfortable”. They should just say: “You will be in much less pain.” The surgeon, as well, said before the surgery that afterwards “it will be a bit sore”. No, no, it won’t be a bit sore, it will be fucking agony. I think people need to know that.
The epidural went in fine because sometimes they can fuck it up. And I was off. They cut me open at half past eight and I woke up at five.
Another thing about the surgery: it is now all risk based. They want to make it open and transparent. It’s not like it was back in the day, when they said: “ We know best, we’re going to do this to you and we’re not going to tell you anything. And we’ll use words you don’t understand.” I mean, they still use words that people don’t understand. I think there’s a problem with that. The doctor was really good about informing my partner after the surgery. Normally it goes through many stages, paperwork and whatever handovers you do. And then the pre-op team, the nurses in post-op and it all takes time before the relatives get to know how the surgery went. Instead the doctor promised to call my partner immediately and he did.
Post-surgery
I woke up. I remember waking up and the first thing I thought was that it smells clean, slightly perfumed and clean. And I thought, that’s quite odd. Last time I was in hospital, it just smelled like disinfectant. And then I could see light. And I remember thinking to myself, fucking hell, I am alive. Because I thought I might pop my clocks. I was feeling very chilled out, but that’s partly because they dosed me up. At some point the surgeon came in and I was still very spaced out, but I remember him saying that it went really well and some details. Maybe you should not have these big conversations with people when you know that they’re completely wasted. I don’t know. But I remember him saying: “We got everything out fine. We’ve closed you up fine. I took out one of your adrenal glands and two of your lymph nodes because I was concerned about those. But when I took them out, they’re really soft and pliable, and that’s a really good thing. The cancer doesn’t seem to have spread otherwise they would be rock hard. See you later mate.”
That was Tuesday afternoon and then my partner and the boys came to see me and I can’t remember what went on. I was still off my face. The nurses and housekeepers were all really nice and lovely, but they had to put me on a fat-free diet. It was the worst fucking food I’ve tasted in my life ever. It was like eating mattresses. For a week I lived on toast and marmite. The nurses throughout were okay. I mean, they were all attentive. They all did exactly what they’re supposed to do. If I wanted a quick chat, they’d do that, but then said: “I gotta get going, loads to do”. I understand there is this massive hierarchy. There are the health care assistants, who change the beds quickly. Then the nurses who take your blood-pressure all the time, even wake you up for it, being apologetic. They tried to help me walk to the toilet, but it was too early, my head was spinning.
As patients do, I got quickly used to the rhythm of the hospital. That was all good, but on the day after surgery the pain started to kick in. I told the nurses. They saw that the epidural drip was finished, but that I hadn’t been prescribed another one. So the handover had not been done properly. They could have known that the epidural will be finished and that other pain relief will be necessary. So they started with oramorph, the liquid morphine. I thought: “Oh, that will be nice”, having experienced opiates in my youth. But it wasn’t like that at all. It had the effects of opiates without any pain-killing element. So it made me feel dizzy and it made me want to throw up like opiates do. But it didn’t kill pain at all. So they played around with a few things, but for several hours I was in and out, because of the bad pain. Then they found a balance of codeine tablets and a paracetamol drip. And that did the trick beautifully. All in all that was a bit clunky, it took them seven hours, there was no consultant around and the nurses were left alone with it. I was attached to a drip, had tubes of a catheter and a wound drain coming out of me and couldn’t go for a shit. That made things worse. The fact that they didn’t deal with the pain on time was no neglect, it was bad planning or lack of coordination. The nurses seem too busy in order to pick up on things: what happens when the epidural wears off? Or the doctors had not given them any instructions.
The only real beef I had was on Thursday morning, two – three days after surgery. At about 6:00 in the morning three junior doctors bounced in on me. They were a bit middle class and a bit posh. They were talking at me at full speed and the phrase I remember was: “We’re going to be cruel to be kind.” That didn’t sound good to me, is that a new NHS motto? “It’s best for the patient, it’s best for you to get up and about and on your feet and home as soon as you can.” I’m thinking, “Yeah, in an ideal world.” There are certain caveats. A huge wound and a wound drain that still drips goo like hell. And the other thing is you’ve got a fucking tube up your knob, you know? One of the nurses was chatting with me after they had left and she said: “Don’t worry about them. There’s a whole checklist you have to go through before your discharge and you weren’t anywhere near that checklist yet.” These three guys didn’t even examine me, they just came to say that they want to be cruel to be kind and that I should leave soon. I never saw them again and I was glad about it. They have to learn how to talk to people.
On Friday they de-catheterised me and took out the wound drip, that was great. Having a shower, that was lovely. The nurses said that there is no time pressure, because it is the weekend and the junior doctors are on strike. That was a nice comradely comment to make me feel less stressed about being discharged too early. The nurses said that once I am at home I cannot lift anything heavier than a kettle for nine weeks. “What?!”. I left on Sunday, it took ages to be discharged. I know there is a whole bureaucracy. The take-home medication. It took eight hours to get rid of me.
I think it’s important to say I might have a more critical view of the hospital stay if the surgery had not been successful and the cancer had not been removed before it spread, which is the main thing. I would have liked more chats, because I like chatting, but I understand that everyone is busy. So all in all it was a good experience.
Immuno-therapy
Now I have to deal with the post-surgery treatment. I was at home for three months. Then they talked about immuno-therapy as a prevention of kidney cancer. Every six weeks you get the treatment intravenously, through a cannula. A week before your treatment you get a call from your consultant, then they take your bloods and so on. In November I started getting bad muscle and joint pain everywhere. My eyes were blood-shot all the time. I would wake up feeling fucked. On top of it all my partner had Covid and was shielding. There is a 24/7 phone-line for Bristol oncology patients, I called them. They were not too helpful. Side-effects of immuno-therapy drugs are pretty random.
Before the therapy they told me that there are “risks attached”. At this point I dwell on medical language and how doctors or nurses talk to patients. I took the piss out of the nurses when they said “visible haematoma”, I told them to say “you are pissing blood”. Let’s speak English, not medical language. Years ago the priests in this country did the mass in Latin and no one could understand them. The priests could say “give me all your money, you wankers”, and the people would not know. Anyway. After the next blood test I got a call from the haematology department saying that my blood is dangerously low in sodium. “We might have fucked up”. They whipped me in that same afternoon. I stayed there and they injected me with two great big bags of saline solution overnight. They also gave me drugs, which I learnt were hydrocortisone. They told me that my adrenal glands were not producing adequate amounts of cortisol. They gave me an appointment with an endocrinologist, a video call. He was quite cold, but he was clear. He said that the immuno-therapy drugs had a bad effect on your one remaining adrenal gland. There is a concern about my thyroid. As a result of which I now have to take hydrocortisone three times a day and levothyroxine once a day – for life. This is not the end of the world, but this is the bit about language. Before I started the therapy they said that the side-effects are ‘treatable’. I think they have to be a lot more clear when they use the word ‘treatable’. ‘Treatable’ to me is a temporary thing, something that can be fixed. What pisses me off is when they say: “this is the main treatable symptom we get”. This doesn’t tell me that I might have to take these drugs for life and that I would get proper ill if I don’t. I might not have agreed to the therapy.
I’m not expecting doctors to pretend to be working class people. But I don’t think it’s too much of an ask to say this vast medical knowledge and medical dictionary that you’ve got in your head, please take the time to translate it so that people properly understand.
I was not part of any self-aid group, but they put me in touch with a guy who’s a super expert consultant at Singleton Hospital in Swansea, who was running some seminars – basically workshops for cancer patients and their relatives and friends who were having immuno-therapy. It was about 2 hours long and I left early because it was actually for people who were really unwell or for people whose relatives were really unwell. People who needed their meds to be adjusted and who were getting really serious side effects. These were people who were having immuno-therapy not as a preventative, but as a curative attempt. I had been unwell, but not to that degree anymore. At Southmead the hospital staff said that if I need more support I should get in touch with Macmillan cancer charity. They do good things, for example speaking to kids of cancer patients. Sometimes kids react to the scary news by blaming the ill parent. We used materials from their website, which was useful stuff: don’t lie, don’t be overly positive or negative. But in general I don’t think the NHS promotes horizontal patient-organising, because they would get challenged way more than they already do.
After-thoughts
Statistics are that one in two people will get cancer in their lifetime. Partly because we live in a polluted and fucked up world and partly because we live longer – but also because we detect cancer earlier. Back in the day people might have died of cancer, but it came up as ‘lung disease’ or something similarly general. Back in the day people saw a clear link between working class conditions in factories and mines and illness. Today that is less clear. Today it is more obvious that if you have money then you get a much quicker diagnosis and treatment. And if you are ill you don’t lose everything. Although as a public sector worker for the council the council would have paid my partner £100,000 if I had died, that is a safety net that not many have. What I want to say is, patients in hospitals are in need of political intervention, if possible organised by themselves. The division between hospital workers and working class patients is still deep.
My cancer was very advanced when it was detected, so the question of different treatments did not come up. I don’t know if there would have been different treatment options if it had been caught earlier. But then there are big debates whether all the screening programs, in particular for breast cancer, are actually helpful, in particular if they are attached to ideologies of ‘lifestyle choices’. It’s not our fault that we get ill or that we need certain things to get through from Monday to Friday. We are forced to lead unhappy lives. One fifth of the population lives in poverty. That is political! In general prevention is good, for example the bowel cancer screenings for middle-aged men. But screening alone is not everything. If we compare the situation with Italy, there the NHS is not struggling as much as the NHS here. In the rural areas in the north they can provide 24/7 on-call oncology nurses even for cancer patients who are at home. Here in the UK the cancer patient waiting list is one of the worst in the EU. In my case three months between the GP visit with heavy symptoms and the surgery, which feels a bit slow, all in all. Even without the cock up in radiography it would have been over two months. But the maths is difficult. I don’t know how many people with worse cancer than mine are also waiting. How do they prioritise?
The cooperation between the consultant surgeon and the oncology specialist nurses in urology was unclear to me. They work on ‘your case’, but deal with different aspects of it? You can ask the oncology nurses questions, and they answer them, but they won’t question what the consultant has decided. If you ask them things like: “Is there a chance that I die during surgery”, they don’t give you a straight answer either, they try to give you reassurances. They are not prepared to go there, also because they lack the time to really engage with people’s existential questions and angst. They will always say: “We will do our best”. Still, you will most likely have a more intelligible conversation with a nurse, rather than with a doctor. Nurses are more approachable, more present. Doctors are a bit like gold dust. I spoke to the consultant for an hour on the phone and for an hour before surgery and then ten minutes afterwards. Job done. Still, it’s his name that I remember, not the name of the nurses. He figured large. It would be good to have a few NHS employees floating around for critical cases who can translate the language for you – like ‘radical left nephrectomy’ – and engage with you, for example by asking if you are scared. And perhaps who don’t wear the codified uniforms of the hospital hierarchy. That requires a small army of extra-staff.
