Well, I’ve been debating with myself about whether to start this thread or not. I was thinking that some people here like to be kept up to date with what is happening with me and this stupid cancer, whereas I doubt others want to know. Eventually, I thought that if I give it its own thread instead of intermittently crashing the rant thread, people can choose whether to click or not. I know, for example, that the subject matter may be very difficult for some to be faced with. Fair warning - I have an incurable disease which is more than likely going to kill me much sooner than would be seen as reasonable. This is going to be distressing for some of you. This way, if you need to, you can skip the whole thing. There has been a lot of change since I last gave an update on my condition here. I got to the point where I just couldn’t face it, and you will see why, I expect, if you read further.

My goal here is to provide a place where I can keep people updated as to where I am with this whole thing, and also somewhere that people can ask questions, add experiences, etc. if they are that way inclined. People can ask anything they like, I’m not bothered. Obviously this does not encroach on the area of medical advice for others, and I’m not looking for any advice on what to do myself, or any sympathy. I am under a number of competent professionals, doing a good job of keeping me alive so far. Ok, here goes. Yes, this is also a bit of catharsis. It helps to get it out.

Warning - what follows is long and distressing in places.

In 2017 I had begun to notice an odd tiredness, much deeper than the usual having had a bad night. At times I felt like I had been drugged. There was also a slight bulge under my left ribs, just like how I guess it would feel if someone were to inflate a small balloon and put it there. There then followed an episode of pain in my left side and abdomen. As one normally does in such circumstances, I took some painkillers and didn’t think too much about it. The pain subsided.

A couple of weeks later the pain returned, so I took myself to the GP. She guessed it might be kidney stones, so sent off for an ultrasound appointment for me. I voiced my fears (I previously suffered with a certain amount of health anxiety) that I might have cancer. She looked at me like I had two heads and asked me why on Earth I would be worrying about that. I trotted away, somewhat reassured.

I never got that ultrasound. During the wait, the pain came back with a vengeance. Painkillers did nothing, and I ended up in March 2017 rolling around on the floor literally howling in pain. We went straight to A&E, where I was given an emergency CT and some heavy duty painkillers, and was asked to return the net day. We dutifully returned on the morrow, and there was some lovely news waiting. I was the not so proud owner of a 14cm kidney tumour. Because of its size and appearance on the scan, it was around 90% certain that it was malignant.

The only treatment was to have it taken out. After some discussions with a (very good) surgeon, some backwardsing and forwardsing with operating theatre bookings (I had to have two slots, as I needed the kidney out, but also the renal vein had to be embolised the day before to prevent excessive bleeding in surgery), and a further scan to confirm there were no other tumours in my body, I was admitted to hospital on the 11th April, embolisation on the 12th (I was awake throughout. They threaded something with a hot bit on the end up my right groin, up my right side, through my heart and down into my left renal vein and burned closed all its ‘outlets’ one by one), full radical nephrectomy on the 13th.

I was given a chevron shaped incision starting on my right upper abdomen, rising to my sternum and then swooping down over the area of my left kidney. I was given an epidural and catheterised, and my own blood was used in transfusion. The operation took about 7 hours total. They removed my entire left kidney, the mass and 14 surrounding lymph nodes. I then spent two days in intensive care. The first day was agony, as the air they pump into you during surgery causes excruciating shoulder pain. Solution - tilt me a different way so the epidural runs to where it hurts. Well, oddly that worked. Coughing was agony, although it was important to cough so that my lungs did not get clogged with nasty bits of yuck that are normally cleared. They had me up in a chair the next day. I was wired up to an arterial line which left me with 3 puncture marks forming a triangle on my inner wrist which stayed with me for months. I half thought about getting it tattooed on. In the hospital, it kept waggling itself loose and setting off an alarm in the middle of the night.

Opposite me, a man was brought in with sepsis. He came in lucid, walking and chatting with family and staff. Over the course of a few hours, I could see him getting increasingly agitated. At one point some doctors went in and closed the curtain, and there ensued a kerfuffle. All I could hear was him saying ‘I need to go to the toilet, I’m telling you, I’m going to make a mess of this bed!’ and a doctor saying ‘sir, sir, you need to lie back. Sir, don’t worry about that, just lie back.’ It eventually went quiet, and when the curtain was next drawn back, the man was unconscious, fully tucked up in bed and on a ventilator. The vision of his wife and daughter coming in later and seeing him, his wife putting her hand over her mouth in shock, will stay with me for a long time. I don’t know what happened to him.

After two days I was considered safe to move to a normal ward, where I spent a further 4 days. I was up and walking about very quickly, although I nearly passed out in the shower, and had to be yelled at by a very tiny Filipina lady (I’m 5’ 10”) to ‘sit down....sit down...SIT DOWN!!!’ before I collapsed on the floor. By the time I was released I was prowling the ward like a caged animal, pretty much back to normal but with a patch of numbness on my stomach, which incidentally never recovered.

Stitches removed a couple of weeks later, and then I had to go to a walk in clinic and get a stray stitch removed that had not dissolved properly and was irritating my skin (internal stitches were dissolvable, and a bit of one was poking through). After that, no problems. I gradually weaned myself off tramadol and liquid morphine for breakthrough pain.

I was put on a 6 monthly scan schedule, and my tumour was sent off for analysis. This took weeks and weeks. When I enquired as to why this was, I was told that it is ‘often complicated in younger patients’. That scared me a bit, I didn’t know what it might mean.

Eventually the lab results came through. I had a 14cm stage 3b (stages are 1-4), grade 2 (grades are 1-4) chromophobe renal cell carcinoma, with one lymph node with ‘a small number of cancerous cells’. This subtype accounts for roughly 5% of all renal cell carcinomas. This makes it a rare cancer, but it traditionally has slower growth and a better outcome than other subtypes. In fact it rarely metastasises, says the literature, and practically everyone I spoke to at that time.

My first scan passed almost entirely without incident; there was a small nodule on my lung, but many of us have such things which are nothing. Indeed, this has never been mentioned again. My next scan was more concerning, but no one bothered to inform me for several weeks (we spent a long time trying to get answers from the hospital and they eventually admitted fault, but I’m not going to go into that whole thing now, water under the bridge). I was eventually informed that a 1.4 cm ‘patch’ had been seen on my liver, and an MRI was ordered. Liver is seen more clearly on MRI.

Fast forward to results day (May 10th 2018), and more lovely unexpected news. The 1.4 cm patch was multiple liver metastases. Crap, it’s back. You quickly learn in this game that if a nurse is in with the doctor reviewing your scans at your appointment, you’re in trouble. They both had on their best sad faces. The cancer was now not curable. ‘Where did that come from?.’ I asked incredulously. The doctor helpfully replied ‘from your kidney’. I meant where had it come from all of a sudden. Chromophobe, remember, Mr doctor? Less aggressive, rarely metastasises. Anyway, I was being transferred to an oncologist. You also quickly learn that you are an individual to which statistics often do not apply. Rarely metastasises, they said...

A slight interlude followed, where I had to have a biopsy of one of the liver lumps before proceeding to an oncologist, just a cheeky check to see if I had a primary liver cancer rather than secondary kidney cancer. The local anaesthetic was great, until the nasty needle reached my liver. Although lying prone at the time, I think I leapt a clear 2 feet off the table when he stuck it in there. Because I moved, he had to do it 3 more times. The poor nurse’s hand was crushed to oblivion. Anyway, the results of that biopsy appeared in the form of a phone call from the cancer centre in order to make an appointment.

June 2018 I had my first appointment at Clatterbridge Cancer Centre with my oncologist and his registrar. Both had great bedside manner, very calm, very reassuring, I had cancer which could not be cured, but was now living with cancer, not dying from it. The aim had become to kick the can as far down the road as possible. I had years rather than weeks or months, and they hoped to be treating me for years to come. They suggested a systemic treatment in pill form for around 12 liver tumours spread throughout the organ - the TKI called Sunitinib, 50 mg. This works by blocking blood supply to the tumour. It has been shown in studies to be effective for my type of cancer. I was now to have 3 monthly scans, with regular blood tests and blood pressure checks. I trotted away with my pills and an enormous list of possible side-effects. Those which I experienced over the course of using the drug included high blood pressure, hypothyroidism, white hair, sore mouth, sickness, sensitivity to many foods, numerous bodily aches, spots, boils, chafing in cruel places and so on.

3 months later, I was back at the cancer centre for my scan results. He’ll get straight to the point, he says, the drug has not worked as well as he had expected. My tumours were not showing any shrinkage, and a couple of them looked a bit ‘plumper’. The plan was now to put me on an elephant-felling dose of Sunitinib which almost no one manages, to be scanned again in 3 months. I hobbled away (sore feet) to start the new gruelling regime. Side-effects were much increased, but when I went back to the cancer centre for results of the latest scan, I learned that all tumours had responded to treatment, with the largest having shrunk by almost 2 cm, from 5.9 cm to 4 cm. You'll hear more about this little bastard in due course. I was very pleased with that.

Then follow a handful of scans in which there was nothing new and nothing grew, and my doctor was beginning to make speculative noises about using localised treatment to destroy some of the tumours, as in all likelihood the disease was located only in the liver. Things looked good.

At around 16 months into my Sunitinib ride, I had begun to experience some more disturbing phenomena, which seemed neurological in origin - bad headaches lasting all day, weird and wonderful visual disturbances and numbness in my face. I started saying sentences composed of random words. Knowing that wasn’t what I intended to say I would try again, but again, random words would come out. I did this on the phone once with a patient, and had to hang up mid-assessment. I felt like a zombie, dragging myself through each day. I started to skip the odd pill, as I just couldn’t bear it. At the same time, I became aware of increasing pain along the top of my abdomen, and someone had shoved another small balloon under my right rib cage. My liver enzymes had also become slightly elevated, which my doctor thought may be one of my gallstones causing trouble.

My next scan results (January 2020) can only be described as a kick in the teeth. The aforementioned biggest liver tumour, which sits atop the organ like an entitled jerk, had swollen and was now pressing on the surrounding membrane, agitating it, and causing my abdomen to fill with ascites (fluid). A new liver tumour was seen. And here endeth the age of liver only disease. Four separate bone tumours were seen, a mixture of lytic and sclerotic lesions, in my left hip, sternum, one mid vertebra and one lower vertebra. ‘Omental thickening’ (omentum = the membrane covering entire abdomen down to pelvic bone) was also seen. ‘Changes’ were noted in both ovaries, with the right being more concerning for cancer. I may now have ovarian cancer on top of advanced kidney cancer. If so, my days really were numbered. In short, Sunitinib had failed at 18 months. Median is 15.

My least favourite oncologist immediately went into a flap - the radiologist report was apparently ‘rubbish’, containing no measurements and being very unclear. I was told to stay where I was, they would ‘bleed’ me there, and they took blood for an ovarian cancer test. She didn’t think I had another type of cancer, she thought it was kidney cancer spread to the ovary. Sunitinib was stopped, and I was put on a four week course of steroids to try and reduce the fluid, after which I would need to start on a new drug. But first, let’s find out if you have ovarian cancer.

After a couple of weeks spent sweating, I don’t have ovarian cancer. My favourite oncologist calmly tells me that the radiologist mistook a fibroid in my uterus for cancer in my ovary. A fibroid which was seen on my A&E scan nearly 3 years ago, and every scan since. So no ovarian cancer, and no kidney cancer spread to the ovary either.

Having got a grip on myself once more, filed away my disappointment and stopped my life flashing before my eyes, I started on my new treatment - Cabozantinib. Like Sunitinib, it is a TKI. I had not been allowed to take it previously, due to the fact it was only licensed for use in the most common type of kidney cancer. My original tumour was even analysed at one point, to determine if it contained just a single cell of the more common type, thereby allowing use, but there was not a single one. Since that time, NHS England has decided that us poor chromies should be allowed whatever our far more common cousins could have by way of treatment, and this new treatment suddenly opened up to me just when I needed it.

Over the ensuing weeks, I noticed a gradual improvement in cancer symptoms. My stomach is no longer unbearably sore to the touch, the abdominal fluid is gone and the hip pain which was constant and sickening has also gone. However, my usual 3 month scan was skipped due to our friend Covid-19, so no images from within to back this up. Additionally, my liver enzymes have been gradually increasing over the last couple of months, until eventually this past Monday, the nurses stopped my treatment for a week. At my appointment I was found to again have increased liver enzymes, a heart rate of 125, and had lost 8 lbs, which came after losses of 7 lbs and 4 lbs at the previous two checkups respectively. I have been dealing with debilitating diarrhoea, constant nausea, and was sick for the first time towards the end of May. The palms of my hands and soles of my feet have been very sore, as has my mouth. Appetite was non-existent. I could barely walk 10 feet without feeling faint, or becoming breathless.

Today I had a phone consultation with my oncologist. I am to brave the hospital with my reusable mask and have a scan next week to actually find out what is happening, and to see if the adverse liver readings are treatment related, or due to the drug not working, ie. disease progression. I’m having a hard time reconciling improving symptoms with treatment failure, but she quite rightly says that this is encouraging, but she wants all the information before she forms a plan for my further treatment.

She says that even if the liver tumours are creeping upwards, that is not necessarily a signal to change treatment, as the drug may be playing an important role in slowing growth down. The worst case scenario is that after 4 months, Cabozantinib has failed. In this case, there will be a discussion over immunotherapy (Nivolumab) versus M-ToR (Everolimus). I have made my misgivings known about the lack of documented effectiveness of immunotherapy in chromophobe patients. She is clear that this is simply down to a lack of data, and anecdotally it can be very effective. We will see. It is also the only treatment that offers a complete and durable response in a small number of cases - a cure, in other, less weasel words.

As I sit here the main bastard on top of my liver is trying to make itself known, but failing most of the time. I’m filling my face with crap while I have my appetite back in the hope of regaining lost weight. Tomorrow, I will go back on the Cabozantinib until the results of my scan are available. I’ll be driving there myself. They can prise the steering wheel from my cold, dead hands.


So. At the grand old age of 47, my life has become separated out into 3 monthly chunks. Scan - results - regain my equilibrium - try to regain a halfway normal life - rinse - repeat. I’m still working, from home via telephone at the moment, due to being on the vulnerable list who must be shielded.

If I am often tetchy on the board, you will know why. It’s a dim reflection of what’s going on in my skull. If I slip and mention the cancer in conversation, you’ll know why. It’s a monster that sits on my shoulder (or in my liver), grinning and rubbing its hands together in anticipation. We all know we will die at some point. We also know that we can die unexpectedly and without warning, or in a more protracted way. Still, when you are faced with a life shortening situation it’s traumatic, and it inevitably leaks into everything you do, unless you are extremely careful or super-humanly resilient. So I apologise if you have ever found yourself thinking ‘oh god, is she whining on about cancer again?’ I will sometimes whine. You may think this very self-indulgent of me. I haven’t made this topic to have a pop at anyone, but may I suggest that if indeed you do think this way, you have not really spent an awful lot of time imagining what it might be like.

I don’t know when I’m going, I just know one day I will go, and unless things improve considerably, I will go rather sooner than most of you. That’s not to say I’m hopeless, definitely not. I’ve amazed myself with how many times I’ve picked myself up, shaken myself off and found another reason to act like a ten year old and laugh at inappropriate things. I have great support, but I won’t go on about that, because he gets embarrassed.

They tell us in the kidney cancer world that we are living in the golden age of treatment, with the advent of immunotherapy, crispr and C-90 spheres...Ten years ago, I would have been told to go home and put my affairs in order the minute those liver lesions showed up, but here I still am over two years later. When I’m not on the drugs, I feel normal. I was just at the hospital for a blood test today, and marched down the corridor like someone in a hurry. I’ve already been given a better chance with a drug that, when I was diagnosed only 3 years ago, was not available to me. If that can happen, who knows what else can.

Ok, that’s it.

I’m glad I know you, H. I like you very much and have done for a long time.

That's one hell of an ordeal and I'm sure even writing it out in all its gory detail is an unpleasant reminder of the whole thing. Thanks for keeping us all updated. You and the whole family are in my thoughts.

Thanks for sharing.

Thanks for sharing. I am glad science came to a place where it can keep you longer here, because this world needs more people like you in it.

aban57 wrote:Thanks for sharing. I am glad science came to a place where it can keep you longer here, because this world needs more people like you in it.

This. All of this.

Sendraks wrote:

aban57 wrote:Thanks for sharing. I am glad science came to a place where it can keep you longer here, because this world needs more people like you in it.

This. All of this.

Just so we're clear, by "people like you", I don't mean brits, OK ?

aban57 wrote:
Just so we're clear, by "people like you", I don't mean brits, OK ?

I didn't think your comment had anything to do with nationality but, about who Fallible is as a person.

Sendraks wrote:

aban57 wrote:
Just so we're clear, by "people like you", I don't mean brits, OK ?

I didn't think your comment had anything to do with nationality but, about who Fallible is as a person.

Sorry, I was trying to be funny. I put smileys at first, but removed them because I assumed it would be obvious. My bad.

Thanks everyone, you are all very kind. However, I honestly didn’t start this thread to fish for compliments. You just do what you have to do in such a situation. Some days I get very angry and am Not a Nice Person. I take it out on the people closest to me. I expect them to be able to read my mind. I forget what they have said the minute they stop saying it. I get angry at my 82 year old mum on the phone because she doesn’t understand and says the wrong thing. I call her less because it tires me out. I stamp my foot and shout why should I have to go through this. I go on protracted google searches for answers or hopeful stories. I turn it over and over in my mind and steadfastly ignore all the tools I have to help me be calmer, and have told dozens of people to use over the years. I am a hypocrite. And that’s another thing. When my doctors and nurses found out I was still working, they put me on some pedestal, I think because a lot of their patients are older. ‘I think you’re great’, they say, or ‘you’re amazing’. Then when they found out what I did, there was more praise. One doctor even told me when I thanked her profusely for what she does for very ill people, ‘you do the same’. Err. Nope, I do not. I work because I can’t afford to stop, and because it helps me to think I‘m still capable of contributing in some way to people’s lives. I talk to people. I definitely do not in any way shape or form do what a bloody oncologist does.

A couple of years ago I joined a special forum for people with cancer and their carers, mainly US based and met a lot of people there going through similar things. Because of its nature, we lose people. They seem to go in groups. I have lost many people I had learned to care about. We have just lost one long standing member who was out driving his tractor around his farm a couple of days ago, then gone. There is a Welsh chap there. He has a different subtype to me, but he has liver lesions the same as me. I’ve followed his story over the last couple of years. His case was much more severe when it was found - he was stage IV, and the tumour had almost reached his heart. He needed a bypass at the time his kidney was removed. When his drug stopped working, they put him on immunotherapy, which did absolutely nothing. In fact his tumours went mad. He ended up with a liver that was 70% tumour. He has been my inspiration. A few months ago, he reported that he had been put on the same drug that I’m on, Cabozantinib, and a scan showed the tumours were now just pus filled sacs. I was amazed and overjoyed. Now he has just been told he has weeks. He has a wife and son. He still pops in now and again. He says there is no pain, and he is happy that he won’t have to fight for much longer. The hospital he sent him home. If I can manage that when it’s my time, that will do me. But I don’t know if I’ll be able to. I am so not ready for that that I picture myself leaving disgracefully, amid a lot of red face and snot.

The_Piper wrote::hugs:
Here's hoping that modern medicine can extend your life in a dramatic way, while making it as comfortable as possible.
I don't consider complaining about a life-changing disease whining. I assume that most people agree. Though I should be careful about assumptions... 2016 election.

aban57 wrote:

Sendraks wrote:

aban57 wrote:
Just so we're clear, by "people like you", I don't mean brits, OK ?

I didn't think your comment had anything to do with nationality but, about who Fallible is as a person.

Sorry, I was trying to be funny. I put smileys at first, but removed them because I assumed it would be obvious. My bad.

I don't let Fal's presumably funny accent get in the way of recognizing her humanity.

You’re the one with the funny accent, Mistah.

Fallible wrote:Thanks everyone, you are all very kind. However, I honestly didn’t start this thread to fish for compliments.

I know.

Fallible wrote:

The_Piper wrote:
I don't let Fal's presumably funny accent get in the way of recognizing her humanity.

You’re the one with the funny accent, Mistah.

I’ve heard your accent...

Fallible wrote:
...

Ok, that’s it.

Hello dear Fallible. I haven't posted on this forum anything substantial for a long time and you might not even recall me, but I never really stopped lurking from time to time, and I certainly know you (from what you've written). You've always been one of my favorite posters, with your keen sense and level headedness. I don't know what to say exactly about your awful predicament, just that I think it's so unfair what you have to go through. I'm so sorry for you, and wish you well from the bottom of my heart. I'm weeping inside, for you, and for all those who love you.

Thomas.

Evolving wrote:

Fallible wrote:

The_Piper wrote:
I don't let Fal's presumably funny accent get in the way of recognizing her humanity.

You’re the one with the funny accent, Mistah.

I’ve heard your accent...

Hey!!

mindhack wrote:

Fallible wrote:
...

Ok, that’s it.

Hello dear Fallible. I haven't posted on this forum anything substantial for a long time and you might not even recall me, but I never really stopped lurking from time to time, and I certainly know you (from what you've written). You've always been one of my favorite posters, with your keen sense and level headedness. I don't know what to say exactly about your awful predicament, just that I think it's so unfair what you have to go through. I'm so sorry for you, and wish you well from the bottom of my heart. I'm weeping inside, for you, and for all those who love you.

Thomas.

Hi mindhack, of course I remember you. Thank you for your kind words. Don’t weep though, inside or out. I’m here right now, and for a while I hope. We all go through stuff, this is just my stuff.

Fallible wrote:

mindhack wrote:

Fallible wrote:
...

Ok, that’s it.

Hello dear Fallible. I haven't posted on this forum anything substantial for a long time and you might not even recall me, but I never really stopped lurking from time to time, and I certainly know you (from what you've written). You've always been one of my favorite posters, with your keen sense and level headedness. I don't know what to say exactly about your awful predicament, just that I think it's so unfair what you have to go through. I'm so sorry for you, and wish you well from the bottom of my heart. I'm weeping inside, for you, and for all those who love you.

Thomas.

Hi mindhack, of course I remember you. Thank you for your kind words. Don’t weep though, inside or out. I’m here right now, and for a while I hope. We all go through stuff, this is just my stuff.

Cheers, I understand. I'll still weep, but cheers. Wish I could just give you a physical hug.

I am currently not in secure enough mental state to read the details of your OP Fallible.
All I can say is that, especially with two uncles dealing with various forms of cancer, I understand part of what you're going through albeit far from all of it. I consider you a friend, as much as anyone can consider someone they've never met in person as such and have always enjoyed our interactions on this forum.
For as little or as much as it might help, my heart goes out to you and your friends and family.

(Another) Thomas