Hi Reddit,

I'd like to share my experience with cancer and answer questions to anybody interested. In August 2019 I was diagnosed with kidney cancer, at the age of 31 and with no previous medical history. This was in the UK, for those interested. At 25cm the tumour was absolutely gigantic, and after much consideration deemed inoperable. My health quickly deteriorated. I was having to use a wheelchair, and lost around 25kg within a few months. A biopsy first determined it to be sarcoma with a high degree of certainty. By this point a cure was off the cards, and I had come to terms with fighting for survival the rest of my life. A week after the sarcoma diagnosis, further analysis of the biopsy confirmed it wasn't sarcoma but instead an incredibly rare cancer called Adult Wilm's.

I received an intense course of chemotherapy, at the time considered palliative, which miraculously shrank the tumour to about 10-20% of its original size within about 5 months. At this point it was possible to remove the tumour surgically. It was a major effort, requiring a large team of surgeons, but I was fortunate enough to get this done at the last minute in early March 2020, shortly before covid hit the NHS and disrupted treatment for many other patients. The tumour was successfully removed, along with my kidney, gall bladder, adrenal gland, and part of my liver, as well as some other bits. I also caught covid while recovering in hospital, but fortunately I was able to get over it without requiring treatment.

I continued to receive radiotherapy and chemotherapy after surgery and was given the all clear in August. In all, I stayed in 5 different hospitals, spent approximately 3 months as an inpatient, had around 50 chemotherapy sessions and 13 radiotherapy sessions. Much of this was during the first wave of covid, pretty poor timing! It's now been over a year since surgery and I'm still in complete remission. I'm back to being fully functional, though not nearly as fit as I used to be. It's not over yet, but normality has returned to my life and the future is looking very positive. Ask me anything!

Photos and verification: https://imgur.com/a/mlU5Dhm

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Comments: 543 • Responses: 55  • Date: 

PersephoneNurse576 karma

Hi! I'm an ICU nurse and I look after cancer patients quite frequently. I'm so happy to hear you are doing well and are recovering. How was your stay in ICU and do you think there is anything that could have been done to make you more comfortable there? I know it's not the most comforting place in the world so I'm interested to hear what could be done better

Complete-Listen-5991405 karma

I was very, very impressed with the level of care I received in ICU and have the utmost admiration for those that work there. It was on a whole different level to what I'd received previously in oncology and urology wards. The pain control was fantastic and at no point did I feel neglected. If there's any critique, and this is clutching at straws a bit, I feel they could've been more careful with covid, but this was back in last March and things have obviously changed a lot since then.

b-cat563 karma

Oh man, you definitely had a rougher 2020 than most. I’m so happy that things worked out for you!

Have you found yourself living your life differently since the diagnosis/recovery? Are you carpe dieming the shit out of every day?

Complete-Listen-5991640 karma

Thanks! I thought I would be carpe dieming the shit out of every day based on all the things I've heard, but it seems the mind is surprisingly stubborn at returning to the default mode of taking things for granted. In fact, until recently I had quite a dark period psychologically where I didn't value my life in the slightest. It seems paradoxical after all of the sacrifice made by myself and others to keep me alive, but I think it was an aftereffect caused by the trauma of the experience. On a positive note, the experience has helped me massively at conquering anxiety. Taking better control of my mind was essential to get through it all, and those skills carry over to my day-to-day life. I also find that I'm more compassionate, less judgemental, and more focused on what really matters in life.

not_anonymouse8 karma

What techniques did you use to reduce your anxiety? I'm hoping I can learn from you.

Complete-Listen-599133 karma

I practiced mindfulness through meditation. I had a LOT of time bedbound in hospital with nothing to do, so this was a lot easier than it would be in a typical daily life where distractions are everywhere. It was also a lot of time to reflect. I'd think about old patterns of thought and behaviour that would result in anxiety, and get rid of them. I met many compassionate people, and this rubbed off on me. To take your focus off of yourself and onto others is important (assuming the anxiety is related to yourself). I experienced many of my worst fears first hand and overcame them through exposure. I had a phobia of needles before all this. Man, that didn't last long. I think all of these techniques help, but mindfulness seems to me the foundation for finding calm.

not_anonymouse6 karma

Thanks for your answer and I'm glad it helped you. What did you use to learn how to do mindfulness thru meditation? There are so many different interpretations that it's overwhelming to me.

Complete-Listen-59915 karma

I used the Headspace app, can't recommend it enough. Once I had enough practice meditating through that, it had massive carryover to my life outside of meditation. It put me in the habit of stopping bad thoughts in their tracks automatically.

UnadvertisedAndroid148 karma

For the still unconvinced Americans among us (no hate, I used to be one and understand the mindset); exactly how much did all this treatment cost you?

Complete-Listen-5991268 karma

About £850. Had to get a private ultrasound for my initial diagnosis to get the ball rolling because the GP told me it would take weeks to even send me a letter giving me an appointment date for a scan, and this was when I basically had a watermelon sticking out of my belly. Also booked a private consultation with my surgeon in the early days to hurry things along. The NHS saved my life and I am forever grateful, but if I was passive and didn't get that private scan, treatment would probably be delayed a month and based on how aggressive the cancer was, I don't think I would be here today. It's important to understand their limitations.

LostKid16145 karma

The United States needs to wake the fuck up and realize it is making their citizens choose between death or a lifetime of poverty should they get seriously ill, even if they have insurance.

I am very glad you are doing well however and hope you continue in good health!!

Mizznomer20 karma

I agree with you 100%.

But, I am also really discouraged by his answer. Looks like OP probably would not have made it if he had not had the money to pay for private scans.

ax0r17 karma

I'm a radiologist in Australia. I mainly work in the public system, which is similar to the NHS, generally speaking.
If a doctor is worried about their patient and is concerned that the waitlist for a public scan is too long, all it takes is a phone call. Depending on how worried the referring doctor is, I could cut the wait down to within a week with no issues. I could even get it done same day, though in that case I'd suggest the patient get admitted to hospital if things are that concerning.

Of course, I can't do this for literally everybody, or else it's just the same waiting list. But if someone is worried, strings can be pulled.

I'd be surprised if those same strings couldn't be pulled in the UK.

Complete-Listen-59916 karma

My radiologist pulled strings after he ultrasounded me and got me a CT scan the next day, so it's definitely possible here. I'm guessing the reason strings weren't pulled to get me a speedy ultrasound were because it was a GP that made the referral, and inter-departmental communications in the NHS seem to be a bit of a nightmare.

Ziggy-Trouble5 karma

I'm a medical student in the UK and someone presenting with a palpable abdominal mass and weight loss should have been given an urgent suspected cancer referral which is meant to be a maximum 2 week wait, I'm surprised your GP didn't do this

Complete-Listen-59916 karma

Yes, I was very surprised at the lack of urgency. With hindsight, it seems a pretty awful error. The bad thing is that, at the time, it reinforced to me that it's not something serious to be urgently checked. It was only through my partner and family pushing that I decided to get it investigated outside of the NHS ASAP.

japertas132 karma

Congrats with beating that bastard. Wish you a speedy recovery!

What lead to the diagnosis?

Complete-Listen-5991241 karma

The first thing I think related to the cancer that I noticed was a sharp intermittent pain in my right ribcage about 6 months before diagnosis. The next thing I noticed, about a month before diagnosis, was that I was bedbound with nausea after drinking a few beers at a BBQ. Next, around the same time, I developed a hydrocele. For those that don't know what it is, it's basically a fluid filled sack in my ballbag. Inflated them like a balloon. I was losing weight around this time, and at the same time as my belly fat was going down, a bulge started emerging in the ribcage near to where that pain was. It protruded further and further quite rapidly.

The final sign was that the extreme sharp pain in the ribcage that kept me up all night. This happened twice very shortly before diagnosis, once caused by stretching and another by squatting (yes, I was still doing heavy belted squats with a bulge coming out of my belly. I was insane.) On reflection, these were a LOT of indicators that something was up and I was still stubborn enough to wait before getting checked as long as I did. Cancer is all about early detection. I hope my experience can be a lesson to others to take an active role in checking for cancer.

Tenzu937 karma

[deleted]

Complete-Listen-599139 karma

It was right in the middle of where you can feel your ribs. I'm not a doctor, in fact my previous posts have probably demonstrated that I'm an idiot when it comes to health, but I don't think a stinging pain is enough to warrant worrying about cancer. Things like lumps, dodgy moles, massive bloody bulges sticking out from one side of your belly, these are the things to be looking out for.

ksmith16603 karma

My stepdad got a hydrocele too. I remember his first ER visit, they just told him it was fluid and he’d be fine and sent him away with some diuretics?? Next visit, tons of test and boom, stage 4 cancer.

Complete-Listen-59915 karma

When I first saw a doctor about the hydrocele, they were very casual about it and I didn't think much of it. They said it was probably caused by moving awkwardly at some point. Apparently I'd had one when I was a baby also, so I just presumed it had finally come back.

Dontbecruelbro66 karma

What do you want to do with the rest of your life?

Complete-Listen-5991158 karma

Mostly I'd like to have a family. Thankfully I took a visit to the sperm bank before treatment began, so fingers crossed there. I'd love to get back into powerlifting, as this was a passion of mine before the diagnosis, though it's proving a big challenge physically. I'm not gonna break any records, that's for sure, but I'd like to realise whatever my new potential there is. I'd also like to travel more, maybe move away from the UK, somewhere warm.

tastethefame34 karma

What about the tumor made it inoperable before treatment? What first alerted you that something was wrong? Was there at least some sense of optimism from your oncologists knowing the tumor was Wilms’ rather than sarcoma?

Complete-Listen-599151 karma

At first when they thought it was renal cancer, they thought it was operable. They booked me in for surgery but I had gotten a pretty serious infection and when I arrived for surgery, they decided I was too sick and did another scan and biopsy instead. The new scan showed it was worst than in the previous scan. Apparently it was pressing harder into the liver than before. At this point they thought it was borderline operable.

When they thought it was sarcoma, I was told it was completely inoperable because it would grow back to its previous state within 6 months if they removed it anyway. When they discovered it was Wilm's, they said it was inoperable at that stage because the usual protocol for Wilm's was to give chemo within a certain timeframe after surgery, and that the surgery would be too big for my body to handle it as well as chemo. But if the chemo was very effective, surgery would be a possibility in the future. Fortunately that's what ended up happening.

There was no optimism from the doctors when it was confirmed to be Wilm's. When my consultant told me that I had it instead of sarcoma, he didn't mention if it was a good or a bad thing. I asked him if it responds well to chemo, and he said he didn't know. I tended to not ask questions at this stage, as I had heard devastatingly bad news a few times previously from asking difficult questions, and I wanted to remain positive. I'd also developed a habit of not Googling anything at this point, so I was very much in the dark about the Wilm's prognosis relative to sarcoma. It wasn't until I changed hospitals and met my oncology team for Wilm's that I realised that the prognosis was more positive and that there was light at the end of the tunnel.

With regards to what alerted me to seek medical help, I'll copy and paste a previous answer: The first thing I think related to the cancer that I noticed was a sharp intermittent pain in my right ribcage about 6 months before diagnosis. The next thing I noticed, about a month before diagnosis, was that I was bedbound with nausea after drinking a few beers at a BBQ. Next, around the same time, I developed a hydrocele. For those that don't know what it is, it's basically a fluid filled sack in my ballbag. Inflated them like a balloon. I was losing weight around this time, and at the same time as my belly fat was going down, a bulge started emerging in the ribcage near to where that pain was. It protruded further and further quite rapidly.

The final sign was that the extreme sharp pain in the ribcage that kept me up all night. This happened twice very shortly before diagnosis, once caused by stretching and another by squatting (yes, I was still doing heavy belted squats with a bulge coming out of my belly. I was insane.) On reflection, these were a LOT of indicators that something was up and I was still stubborn enough to wait before getting checked as long as I did. Cancer is all about early detection. I hope my experience can be a lesson to others to take an active role in checking for cancer.

1592602822 karma

Has this experience changed you as a person, your views on life, etc?

Complete-Listen-599159 karma

The experience has helped me massively at conquering anxiety. Taking better control of my mind was essential to get through it all, and those skills carry over to my day-to-day life. I also find that I'm more compassionate, less judgemental, and more focused on what really matters in life. Compassion from others was so important in keeping me alive, so I truly understand its fundamental importance.

Sirah103 karma

How did you take better control of your mind? As someone who is having anxiety attacks for the first time, would love to know how you overcame it.

Complete-Listen-59914 karma

I practiced mindfulness through meditation. I had a LOT of time bedbound in hospital with nothing to do, so this was a lot easier than it would be in a typical daily life where distractions are everywhere. It was also a lot of time to reflect. I'd think about old patterns of thought and behaviour that would result in anxiety, and get rid of them. I met many compassionate people, and this rubbed off on me. To take your focus off of yourself and onto others is important (assuming the anxiety is related to yourself). I experienced many of my worst fears first hand and overcame them through exposure. I had a phobia of needles before all this. Man, that didn't last long. I think all of these techniques help, but mindfulness seems to me the foundation for finding calm.

NHE-Silent21 karma

Was there ever a point where you thought you were surely going to die?

Complete-Listen-599184 karma

Yes, a few times. The first time was when I was initially diagnosed right after a CT scan. The first words the doctor told me, with obviously a great deal of pain in his voice, was "it's all cancer." At that point my partner burst into tears and I believed I was definitely going to die very soon. I knew nothing about cancer at this stage. I've learned since that cancer is much more complicated than just a death sentence. After he explained an extremely optimistic treatment plan though, I had some hope. This hope was gradually eroded as the weeks went on and the news became worse and worse.

A similar event happened at my next consultation. The doctor told me that the treatment plan laid out by the previous doctor wouldn't be possible. He thought it had spread to my liver, and possibly my bones, and that previous data suggested a 25% chance of living more than five years. At this stage (I had family with me this time) again everyone around me burst into tears, and it felt certain I was doomed. This feeling of being doomed was more powerful than the last one, and remained for the entire day and night. It was the worst day of my life. I didn't think I valued my life much at all before the diagnosis, it was probably why I only got medically checked once my partner pushed me to do it, but now the desire to live was the most powerful emotion I'd ever felt, but at the same time I believed I didn't have long left. When your survival instinct kicks in, it's really something. The emotional pain was indescribable. Thankfully after more scans I learned that it hadn't spread to my liver or bones.

The next point I felt surely I was going to die was when I developed severe pneumonia and the tumour had collapsed my lung. I was semi-conscious and in tremendous pain with a fever over 40C for a couple of nights, and the situation seemed completely hopeless. The idea of death felt more like a release at that point.

Once I was diagnosed with sarcoma my relationship with hope changed drastically. After some grieving upon learning it was now inoperable and incurable, I came to terms with my death as an inevitability. I suppose this is something we all have to do at some point. Now my mindset changed, as it wasn't about hoping for a cure to save my life, but actively fighting the bastard to extend whatever life I had left. For the first time throughout the whole process, I was mentally at ease. I felt strong and in control, and I was determined that through the right way of thinking and healthy lifestyle I could hold it at bay for years. I had just started taking amitriptyline as a painkiller, and this may have been a big contributing factor in this change of mindset.

nippleFantasia20 karma

Congrats on getting the all clear mate!! I work in radiotherapy and you're not lying when you say your diagnosis is rare. I can think of only one patient I've ever treated with your diagnosis in nearly 8 years especially when considering your age. How did you find your experience with radiotherapy? I always find it more difficult to communicate/ offer the same level of care to patients of your age because of their need for independence and not wanting to be overbearing.

Complete-Listen-599111 karma

It certainly is rare! I'm surprised you've even had a patient with it. It wasn't me by any chance, was it? Haha. The staff at radiotherapy were very good. I felt the they were much less busy than in other departments, such as on the ward, so more motivated to do a good job. If I could offer my perspective on the level of care I wanted, I was very happy to do whatever I was capable of myself and ask when I needed help. It really wasn't something I cared about though, I just wanted the job done correctly and quickly. Time spent there was always a big deal to me, I wanted to get in and out as soon as possible because most of the time I felt awful and the chances were that I was going to need the toilet at any given moment. They were always very quick with me though.

Gorillapatrick17 karma

Did you have any risk factors / lifestyle factors that probably contributed to that cancer?

Complete-Listen-599129 karma

Nothing majorly obvious. My family didn't have a history of cancer, except one aunt. I was physically very fit, didn't smoke, and didn't drink often (though I would binge on the occasional night out every couple of months). My diet wasn't the most kidney friendly, as I consumed 200g+ protein a day. Also I did tend to push my body to the limits with lifting, though I can't imagine these can be causes so much as things that just made the cancer worse.

tqb9 karma

I’m glad you’re doing well!! Can you still eat high protein and lift after your treatments/kidney removal? Does your body physically feel different now that you have portions of organs missing? Your story is very inspiring

Complete-Listen-599123 karma

Thanks! My doctor advises against high protein intake, as my sole kidney isn't in the best condition, so I need to look after it. I'm fine to lift, though I'm certainly not touching a weightlifting belt for at least another year. God knows what that thing did to my body whilst I had a 25cm tumour in there. The endurance levels have taken a much more significant hit than my strength levels, and are taking a looong time to improve. I can move some decently heavy weights, but I wouldn't have the fitness to be able to go for a day out at the zoo or something (not like I can during lockdown anyway!). I think the best way to describe how my body feels now is like an old man. But I'm still alive so it's all good.

Xdsboi12 karma

Hi, I'm glad to hear you made it you sexy beast.

My question is, were there any signs or feelings that made you decide to get tested for cancer in the first place?

Complete-Listen-59917 karma

The first thing I think related to the cancer that I noticed was a sharp intermittent pain in my right ribcage about 6 months before diagnosis. The next thing I noticed, about a month before diagnosis, was that I was bedbound with nausea after drinking a few beers at a BBQ. Next, around the same time, I developed a hydrocele. For those that don't know what it is, it's basically a fluid filled sack in my ballbag. Inflated them like a balloon. I was losing weight around this time, and at the same time as my belly fat was going down, a bulge started emerging in the ribcage near to where that pain was. It protruded further and further quite rapidly.

The final sign was that the extreme sharp pain in the ribcage that kept me up all night. This happened twice very shortly before diagnosis, once caused by stretching and another by squatting (yes, I was still doing heavy belted squats with a bulge coming out of my belly. I was insane.) On reflection, these were a LOT of indicators that something was up and I was still stubborn enough to wait before getting checked as long as I did. Cancer is all about early detection. I hope my experience can be a lesson to others to take an active role in checking for cancer.

Alanm933 karma

What were the initial tests that were done when you went to the doctors about your symptoms? I'm really glad you are doing better man this is a heartwarming tale. Good for you.

Complete-Listen-59914 karma

Thank you! I appreciate it. After seeing the GP, they had a look and a feel of the belly bulge and suggested a blood test and ultrasound. During the ultrasound, the doctor couldn't find my kidney and was worried enough to book me for a CT scan the next day. The CT scan revealed the extent of the cancer, and the blood test revealed that my liver and kidney function were terrible. I was then given an MRI scan of the liver and kidneys, and a bone scan. These were to determine if the cancer had spread to my bones, second kidney or liver, which thankfully it hadn't. This all happened over the course of about a week.

XmasJ11 karma

Wow...that's an amazing story. Am praying for your continued recovery, and a swift one at that.

My question is: are you religious? And if no, do you feel changed after the health ordeal you went through?

Complete-Listen-599124 karma

I'm not religious, though very open to it. When I was told that my cancer was 1 in 10 million, as well as the unlikelihood of many of the other events, I wondered often if there was a religious significance to it all. It all just felt so impossibly unlikely that normal explanations seemed hardly more believable than religious ones. I wondered if I was being punished or tested.

With regards to how I've changed, the experience has helped me massively at conquering anxiety. Taking better control of my mind was essential to get through it all, and those skills carry over to my day-to-day life. I also find that I'm more compassionate, less judgemental, and more focused on what really matters in life. Compassion from others was so important in keeping me alive, so I truly understand its fundamental importance.

8Bells9 karma

Glad to see you made it through! Unlucky about catching Covid. Did you have any symptoms or were they hard to tell with the other health impacts you had going on?

If you were asymptomatic, do you think having had symptoms during your treatment would have changed things for you progress wise? Do you think you have any lingering effect re: long covidm

Complete-Listen-599117 karma

It was certainly hard to tell due to all of the other things going on with my body at that stage. The only symptom I can pinpoint specifically to covid would be that I had a high fever. If I developed covid before the surgery, it certainly would have delayed surgery, which would've been very bad. If I was asymptomatic and had the surgery, to be honest I have no idea what would've happened.

With respect to long covid, again it's very hard to tell. I do have fatigue, poor lung capacity and awful cardiovascular endurance now, but these would have been caused by all the treatment, pneumonia, and collapsed lung I went through. There's just no way of knowing. It's not really something I think about though.

Smithcaj658 karma

Welcome to our kidney cancer survivor club. We are not much for having meetings but our scars look pretty cool.

I'm wondering if you have got back into the gym and if you have got any advice about your protein intake?

Complete-Listen-599115 karma

Hello fellow kidney cancer survivalist! Yes, I have gotten back to the gym. I was even lifting 3x a week during chemotherapy leading up to surgery, until my surgeon found out and told me not to. I'm now lifting 4x a week and, frankly, it's a bit of a nightmare. My endurance levels have taken an absolute battering so anything above 6 reps wrecks me. The progress is happening though, so it's all good.

Protein intake is a tricky one. The kidney I have left isn't in the best condition after all the stress it's been through, apparently radiotherapy is to blame. My most recent blood test showed high protein levels, and my doctor has recommended limiting my protein intake to whatever I'd get from regular eating, without supplements, for the sake of my long term kidney health. So I just eat a regular, balanced diet and typically hit around 100-120g a day. To do this I also have to avoid extremely high protein meals, such as binging on 5 KFC chicken pieces. This is supposedly suboptimal for getting the best lifting gains, apparently 1.6g per kg of bodyweight is the sweet spot, but health must take priority.

All the best to you!

guitarzero2387 karma

Congrats sir ! As a fellow survivor I was wondering Do you have a number?

During my treatments I noticed the number 13 popping up everywhere. I went to hospital on the 13th, I was in room 13 when they told me at 1pm, 1300 hours in military time.. etc.. I ask because this happened to a very close friend of mine too when he went through treatments

Complete-Listen-59916 karma

Thanks! Congrats to you too. No numbers here. I was on so many drugs most of the time that I doubt I could've even remembered any number. Or I did have a number and I forgot because, you know, drugs.

coffeesojourner7 karma

Some supplements used by those into body/muscle building have been claimed to cause kidney damage among other side effects of use. Do you think your cancer could have been caused by these supplements?

Complete-Listen-59916 karma

I don't know. It felt like it at the time I was diagnosed because it seemed so unbelievably unlikely, but I know I did some pretty rare things to my body for strength gains, so my mind made a link there. My diet and lifestyle definitely wasn't kidney friendly. I consumed 200g+ protein a day, probably had a ridiculously high salt intake and didn't hydrate myself as well as I could have. My guess is that it didn't cause my cancer, but it probably made it worse.

jaju1238 karma

I think the dude is insinuating steroids but your physique looked naturally achievable to me

Complete-Listen-59918 karma

Oh, yeah, I wasn't on steroids.

Dartan827 karma

American here. How does paying for all this work?

Complete-Listen-599125 karma

Other than having to pay a trivial sum for a couple of diagnostics to try hurry things along, it was all done on the NHS. Taxes paid for my care.

thefablizzie7 karma

Thank you for posting this, it gives me some hope. I am currently out of town with my mom that is having pain in her side. The doctor has found a mass on her transplant kidney and they are doing a biopsy tomorrow. Any tips for the people in her life to keep her positive?

Complete-Listen-599110 karma

When I was in a similar position, I wanted the people around me to be strong and positive, and it would rub off on me. I didn't want sympathy, misery or any form of negativity from others. The best support for me was for somebody to remind me of the optimistic perspective, because without that my mind would sink into extreme pessimism.

moleyman96 karma

1st off congratulations and for my question through all the crap news etc at what point did you think "I'm actually gonna beat" this and what was the feeling like ?

Complete-Listen-59912 karma

Thank you! I believed I was going to beat it once I had finally began chemotherapy, the first treatment after months of changing diagnoses and utter confusion. This was quite an irrational belief, as this chemo was primarily palliative, but the doctor had given me the first glimpse of hope that I had had for months, and I clung onto it hard. The feeling was very pleasant. It felt like time was on my side, which was new to me. Throughout the 5 months or so I was getting chemo, up until my surgery, that feeling remained. I look back on that time very fondly, except for the chemo cycles every 3 weeks, which were pretty miserable.

Seattleopolis6 karma

Has your partner been steadfast?

Complete-Listen-599120 karma

Yes, she has been incredible. From the moment I was diagnosed, her sole focus was to get me better again, however she can. She put up with a lot. I was very difficult at times, especially when I was on dexamethasone. That stuff can send you a bit crazy. I think her support was invaluable to my recovery.

Slow2815 karma

It looks like you workout according to the post picture. Has the removal of your adrenal glands affected your workouts? I know I generally have my best workouts when I pump myself up and get the adrenaline flowing.

Complete-Listen-599113 karma

My workouts have been hugely affected by the damage from the cancer and treatment, but it's impossible to know to what extent the removal of the adrenal gland was a factor compared to other things. I have no idea what the adrenal gland does. If it's involved in getting pumped up, it's not something I've tried yet as I'm not at a stage in my recovery where it'd be wise to train at high intensity.

blackwoodify2 karma

I own testosterone replacement therapy clinics -- I would definitely suggest finding a specialist near you in the UK! I am not a Doctor, but I have heard of many patients benefitting after cancer treatment... especially if the chemo / other treatments affected their body's ability to naturally produce T. It might help you get more from your workouts, but it also may help with your general energy, sleep, mood, etc.

Complete-Listen-59913 karma

Thanks for the suggestion. I was thinking about getting my testosterone levels tested soon for that very reason.

Ghaenor4 karma

Do you need another kidney?

Complete-Listen-59915 karma

No, one kidney is fine. It's not in the best shape, radiotherapy apparently done a number on it, but it's nothing the doctors are worried about. I just need to look after it by staying well hydrated and keeping my nutrition in check.

nobueno13 karma

As a Radiation Therapist, it makes me so happy to hear when patients get the clear of cancer! I get to see my patients in the most scary times of their lives and hopefully make them as comfortable as I can when I see them. What are some things that the therapists done or could have done that made getting treatments a better experience for you? I try to get to know my patients and find out about their interests and remember them in the few minutes a day I get to spend with them getting them set up.

Complete-Listen-59915 karma

You're the second person to ask this question interestingly. Radiotherapists seem a rather considerate bunch! My experience at radiotherapy was all positive. I felt that they were much less busy than other departments, and thus more motivated to do a good job. For me, because I would go to my radiotherapy session immediately after chemo, I was in a pretty awful state when I arrived and not really wanting to talk. The most important thing for me was firstly, that the job was done correctly, and secondly, that I was in and out of there as fast as possible. I think you radiation therapists do a fantastic and vital job, and it really is something you should be proud of.

nekogaijin2 karma

Congratulations!! My father also recovered from kidney cancer. Kudos!

In the US this would have wiped many people out financially, caused bankruptcy, even with insurance. Those without insurance may never see a doctor. We are told that it's worth it because in the UK, you will not get to the doctor in time to cure your cancer. And you don't have advanced enough technology to cure it. You have to wait until it's too late. Care us rationed. ( Although here in the US, there are waiting lists for some specialists.)

Can you give us a run down on your out of pocket costs?

How long before you were able to see a doctor?

Did you have to wait months for cancer treatment and surgery?

How did you pay your bills ( rent, electric, food, etc) while recuperating?

I just want to hear from someone who has gone through it rather than relying on US propaganda. Thank you!

Complete-Listen-59915 karma

Thank you! Much appreciated. I don't know anything about the US healthcare system, but I'm quite experienced now with our NHS and happy to talk about that.

Can you give us a run down on your out of pocket costs?

- In terms of paying for my own care, there was only two instances early on where I chose to do this. I paid for an ultrasound and a private consultation with a surgeon. The ultrasound was around £600 and the consultation was £250. I paid for the ultrasound because my health had deteriorated very rapidly; there was a large bulge protruding from my ribcage and I felt that I needed it looked at immediately. With the NHS I was told I'd have to wait approximately 2 weeks to receive a letter with an appointment date, with no indication as to what that date would be. In hindsight this turned out to be a potentially lifesaving decision due to the vital time it saved me. I paid for the private consultation again to try speed things up. The surgeon needed to see me ASAP to get the ball rolling for surgery, but with the NHS I'd have had to waited a week or two to see him. I didn't need to pay for any more care as once I was in the system and diagnosed, the NHS was faster than any private options in this country would've been.

How long before you were able to see a doctor?

- I was able to see a GP within a few days of booking an appointment. I don't know if GPs are a thing in the US, but they're non-specialised doctors and the first port of call. To see a specialist doctor in a hospital on the NHS however, as mentioned in the previous answer, would've taken weeks.

Did you have to wait months for cancer treatment and surgery?

- Yes, I was diagnosed in early August 2019 and didn't begin treatment until I believe late October/November 2019. This is not the fault of the NHS though, as my case was quite exceptional. This was because the original plan to give me surgery a month or so after diagnosis had to be cancelled at the last minute, as I had an infection. At this point I had a biopsy, and it took them many weeks to definitively diagnose me with Wilm's, presumably because it's such a rare cancer for adults. Once I was finally diagnosed, treatment began in only about 2 weeks.

How did you pay your bills ( rent, electric, food, etc) while recuperating?

- I had fortunately already overpaid a large proportion of my mortgage leading up to the health problems, and had enough in savings to cover other expenses throughout the period. It wasn't something I had consciously planned for, but all worked out very conveniently, though things got pretty tight towards the end.

I hope this answers your questions, and if you'd like to know more, feel free to ask.

TheBlasphemistB2 karma

I was told traumatic, stressful and anxious episodes in one's life can trigger PTSD. Even lasting episodes (2 months) of anxiety seemingly for no reason can cause this. Would you say this whole experience gave you any form of ptsd, has your life been affected in some way, causing you to not be able to deal with certain things as easily as you used to? Im sorry if this is a bit of a weird question. Thanks and i wish you all the best

Complete-Listen-59913 karma

It's not a weird question at all, and I'm happy to answer anything. I don't know much about PTSD, but I certainly experienced for the first time what I believe to be the aftereffects of trauma. This was shortly after my surgery and lasted a few months. I withdrew into myself, could not find joy and felt no desire to live during this time. I've since overcome this and don't feel that I have any lasting psychological issues from the ordeal. In fact, I feel that my anxiety is much less than before the diagnosis, as I've learned better coping mechanisms.

TheBlasphemistB2 karma

Oh well, thanks so much for this reply (it was quite useful). Did during those months of 'trauma', if you will, did you ever have moments during which you thought; "If this feeling (mental state) does not get better, i dont think i want to live"? and also, how did you notice this mental spiral started to get better? Thanks alot

Complete-Listen-59913 karma

Yes I did think that, but I believed (and others reassured me) it was more than likely just a temporary mental wound that time would heal, which it did. I think the main thing that made me notice my mental state was improving was that I started wanting to interact with others again. During this dark period I felt that I couldn't relate to others as my worldview had been so profoundly changed by my recent traumatic experiences. With my life returning to normality and time taking these events from the forefront of my mind, I was happy to connect with people again.

caretotry_theseagain2 karma

Did the "muscle growth helpers" you used to take contribute at all to your situation in any way?

Complete-Listen-59912 karma

I had protein shakes and creatine, wasn't on steroids/PEDs if that's what you mean. I doubt my lifestyle caused cancer, though I wasn't very kind to my kidneys so it probably made it worse.

Snippy_Snallygaster2 karma

Real talk, was it worth it? Of course fighting for your life always is, but I mean would you do it again if you had to, or...

I've always said if I got cancer I'd rather let it win than go through chemotherapy. Its come up a lot in my family, with one cousin basically having to be hollowed out to save him.

I truely can't imagine what survival would feel like though, it's probably a unique emotion to it's own.

Complete-Listen-599113 karma

I felt the same before I was diagnosed. I was indifferent about the prospect of having serious health problems. However, once the reality that I was likely to die in a fairly short time kicked in, the drive to survive was the strongest emotion I've ever felt in my life. I remember telling my partner during one of those awful nights that I would go through any ordeal, I would lose absolutely everything if I could only just keep my life. That's genuinely how I felt, so to me, at that moment, it was more than worth the suffering.

Would I go through it again? At this present moment it feels not worth it, but feelings are transient and sometimes pretty damn stupid. I know for sure that if the cancer came back, survival mechanisms would kick back in and I would do anything to survive. So yes, although it may not feel it currently, I know I would go through it again.

Jasonmilo9112 karma

First of all, awesome to hear about your recovery! Wish you all the best man!!

From the first question it looked like you were hitting the gym really hard! Did you use to take any supplements? Ever taken PED?

If yea, could have it been a factor in the formation of the tumor? Did the doctors mention anything?

I hope this does not come out as too assuming, I’m just genuinely curious about it!

Complete-Listen-59915 karma

Thanks a lot! I had an arseload of protein shakes and creatine but that's about it, never PEDs. When I had my first CT scan, the doctor did ask me if I was on steroids. But I answered no and nothing more was ever spoken of it. Whether or not my protein/creatine supplementation and lifting played any role in my cancer, it has certainly sprung to mind, but no doctor has ever said anything to me to indicate that as an evidence backed possibility.

iamhere110512342 karma

Did you have to fight the doctors or advocate for yourself when you first went to the doctor? I am in Germany and they usually don’t care/say it is something lowkey and tell you to rest and drink tea. My one friend had a brain tumor and spent TWO YEARS fighting with doctors, getting a range from “it’s your cycle”, to “it’s stress” etc. Finally one doctor put in a request for MRI and after waiting 2 months she got her brain scanned and then only was taken seriously. So....maybe the NHS is different?

Complete-Listen-59913 karma

I've certainly had to take an active role in my own care when dealing with some doctors, and if I had been passive then I'd probably not still be alive. When I first saw a GP (with a big bulge protruding out of my ribcage), she said I'd have to wait weeks for an ultrasound and when I asked if I should get one done privately, suggested to not bother.

At another point, I developed severe pneumonia and a collapsed lung and had to be hospitalised. Throughout my 2 week hospital stay, I saw my doctor once for no longer than 2 minutes, which was him telling me I can go home. I was still very unwell, and within a few days of being home, my pneumonia returned and this prevented me from having surgery. With hindsight this worked out for the best, but it could easily have ruined chances.

On the whole though, especially within oncology, the doctors I've met have been true heroes and I couldn't speak high enough of them.

00azi2 karma

Amazing! Congratulations! I am so happy to hear that you are still in remission a year later, fingers crossed it stays that way forever. Is there anything you did during the course of your treatment that you think may have helped you? Not disputing the science, just curious if you tried to remain positive or just smaller things that you think may have helped you during this time.

Complete-Listen-599115 karma

It's impossible to know if the things I did helped or not, as it could've been 100% just the treatment working its magic, but there were many things I tried that may have helped.

- I kept hearing how important it was to stay positive, so I avoided Googling anything about cancer or asking doctors anything beyond what I needed to know for my own wellbeing. This helped me avoid negativity and believe I would be okay.

- I meditated, and tried to be mindful. This was easy as I spent so much time bedbound in hospital that I had a LOT of time alone with my mind.

- By the time that I had been diagnosed with Wilm's and was finally starting chemotherapy treatment, I genuinely believed wholeheartedly that I was going to beat cancer. This may or may not have been induced by painkillers I was on, opiates and amitriptyline mostly.

- I regularly imagined the immune system killing the cancer cells to try and trigger an immune response.

- Once the chemo was kicking in and I was out of the wheelchair, I exercised frequently, pushing myself to get fitter and stronger. I set step goals for walking every day. I stopped muscle wastage through calisthenics, push-ups and squats mainly. I even eventually did barbell lifting 3x a week and made surprisingly good progress, until surgery was planned and my surgeon told me to stop it. I also got myself an exercise bike to get my heart as strong as possible before surgery, and really pushed myself on that.

- I put a lot of emphasis on diet. Once chemo was working and I became more functional, I forced myself to eat an absolute ton to get back some excess weight before surgery. This drastic change in bodyweight is probably shown on the pictures. I was actually slightly overweight going into surgery, which worked out well as I lost it all again during chemo and radiotherapy afterwards. I learned what the renal diet was, and ate in a kidney friendly (which I still do). Obviously I didn't touch cigarettes or alcohol either.

gepinniw2 karma

Not casting aspersions or anything, but did you juice? Because I came across this:

https://jamanetwork.com/journals/jama/article-abstract/353295

Complete-Listen-59913 karma

I didn't juice.

yovman2 karma

What was the first symptom that sent you to the doctor where they first discovered this?

Complete-Listen-59914 karma

The first thing I think related to the cancer that I noticed was a sharp intermittent pain in my right ribcage about 6 months before diagnosis. The next thing I noticed, about a month before diagnosis, was that I was bedbound with nausea after drinking a few beers at a BBQ. Next, around the same time, I developed a hydrocele. For those that don't know what it is, it's basically a fluid filled sack in my ballbag. Inflated them like a balloon. I was losing weight around this time, and at the same time as my belly fat was going down, a bulge started emerging in the ribcage near to where that pain was. It protruded further and further quite rapidly.

The final sign was that the extreme sharp pain in the ribcage that kept me up all night. This happened twice very shortly before diagnosis, once caused by stretching and another by squatting (yes, I was still doing heavy belted squats with a bulge coming out of my belly. I was insane.) On reflection, these were a LOT of indicators that something was up and I was still stubborn enough to wait before getting checked as long as I did. Cancer is all about early detection. I hope my experience can be a lesson to others to take an active role in checking for cancer.

kangarufus2 karma

Do you think that guns make society safer or more violent?

Complete-Listen-59912 karma

I'm not touching that topic with a 50 foot pole on reddit.

HonoraryMancunian2 karma

How disappointed are you that there's been 400 comments and not a single one talking about those gigantic yorkshire puddings?

Complete-Listen-59912 karma

Haha I was expecting a comment on it actually, but you pulled it out of the bag, so thank you.

Chim_Pansy1 karma

What do you mean? I can still see two humongous tumors in your arms. /s

Good on you for overcoming impossible odds and kicking life's ass, man. A true inspiration!

What was the first thing you decided you would do once you gained a new lease on life (aside from getting in tip top shape)?

Edit: sorry I thought the photo was after your recovery, didn't realize it was before. You still look great now though, man. Keep being awesome!

Complete-Listen-59912 karma

Thanks a lot! Much appreciated. The only thing that seems to grow on me now are glutes. Who needs guns when you've got a massive arse, right? The thing I craved more than anything whilst I was sick, and couldn't imagine ever being able to do again, was to have a holiday. I was able to do this last October, 2 months after being given the all clear. I spent 10 nights in Cyprus with my partner and it was amazing.

Umbrabyss1 karma

How did they find it? That's something I've always been concerned about. You hear stories of people being lucky a brain tumor was found cause they had a car wreck and needed to check for a concussion and, boom, brain tumor or some other wild coincidental way. So, was yours coincidental as well? If not. What sort of regular screens were you doing where they could catch it and did you recieve any advice for keeping an eye on other areas in the future?

Complete-Listen-59912 karma

Mine wasn't coincidental and I wasn't having any regular screens. Mine became apparent when I noticed a big bulge sticking out of my ribs. I would advise paying close attention to any new lumps or strange moles that form on your body, and to act quickly. I'm at high risk of developing a new tumour due to all of the radiotherapy I had and I've been told in particular to look out for blood in the poo and urine. I'll copy and paste more details from my previous answer:

The first thing I think related to the cancer that I noticed was a sharp intermittent pain in my right ribcage about 6 months before diagnosis. The next thing I noticed, about a month before diagnosis, was that I was bedbound with nausea after drinking a few beers at a BBQ. Next, around the same time, I developed a hydrocele. For those that don't know what it is, it's basically a fluid filled sack in my ballbag. Inflated them like a balloon. I was losing weight around this time, and at the same time as my belly fat was going down, a bulge started emerging in the ribcage near to where that pain was. It protruded further and further quite rapidly.

The final sign was that the extreme sharp pain in the ribcage that kept me up all night. This happened twice very shortly before diagnosis, once caused by stretching and another by squatting (yes, I was still doing heavy belted squats with a bulge coming out of my belly. I was insane.) On reflection, these were a LOT of indicators that something was up and I was still stubborn enough to wait before getting checked as long as I did. Cancer is all about early detection. I hope my experience can be a lesson to others to take an active role in checking for cancer.

Cornslammer1 karma

How did the tumor get to 25 cm?

Complete-Listen-59912 karma

It grew in a part of the body called the retroperitoneum, which is apparently quite spacious. Apparently it's also a characteristic of Wilm's to just get bloody big. It also grows into veins too, like some annoying octopus. It's quite amazing how the body adapts to something like that. My liver had been pushed right up my side into some ridiculous shape. Eventually it got a bit too big though, and collapsed my lung.

monchimer1 karma

Wow what an emotional rollercoaster. Congratulations! Quick question. What makes a tumor inoperable ? What is stopping a doctor from removing a 25cm tumor ?

Complete-Listen-59913 karma

It was considered inoperable when they had diagnosed it as sarcoma because apparently if they removed it, it would just grow back to its previous size within 6 months anyway. Other factors were also that they didn't think they could get something I believe they called a "plane of dissection" between the tumour and the liver because it was pressing into it so hard, and that it was invading vital veins, like the IVC. My tumour wasn't like a ball, more like a big bastard octopus.

Lys_Vesuvius1 karma

How have you been dealing with the fact that you're significantly smaller(physically, definetly not mentally)than you once were? I find myself panicking when I lose a few pounds let alone as much as you have.

Complete-Listen-59913 karma

It's not ideal, but very trivial compared to the other things I've lost, as well as the concerns for the future of my health. Besides, with just one dodgy kidney left, keeping my bodyweight lower is for the best.

M00NCREST1 karma

What was your diet like throughout your treatment?

Complete-Listen-59913 karma

Leading up to treatment, I was eating almost nothing as I had no appetite and food went straight through me. I adopted the renal diet to try and get my kidneys in their best possible condition before chemo began, which is mostly just monitoring your protein, salt and potassium intake. When I first went into hospital to start chemo, I had a severe infection at the time and solid food caused horrendous bowel pain, so I would have liquid food. I bought Huel from the hospital and drank that. It was so expensive! The hospital also started giving me some shots of drink that were packed with sugars and protein. They were called ProCal shots, I believe. Once the infection cleared, I'd eat the hospital food was, to be honest, was pretty dire. Once I was home in-between treatment cycles I'd cram as many calories in as I could to try and get some weight back on. I ate anything I felt like that wasn't too high in salt. I remember lots and lots of sugary cereal and pizzas, it was pretty great. The excess weight I gained from this paid off hugely when the time came for surgery and could hardly eat a thing for weeks.

redlabel770 karma

Did you ever play League of legends?

Complete-Listen-59913 karma

No. Dota was good though.

LiamGTR-2 karma

Did you ever consider rick simpson (THC) oil?

Edit: by the way for anyone reading this, I'm not recommending it over actual medical care. I just know there is a large, growing, community surrounding this that swear by it.

Complete-Listen-59911 karma

No, I've never heard of it.

Bees-in-the-trap-27 karma

Do doctors think the steroid use caused the cancer?

Complete-Listen-599133 karma

I never took steroids. My lifestyle wasn't the most kidney friendly though. I consumed 200g+ protein a day and supplemented creatine, possibly being reckless with the dose. I don't know how that could cause something like cancer though. The doctor that diagnosed me asked me if I was on steroids before he scanned me.

I found this video interesting. Based on it (and my limited understanding), it's theoretically possible for extreme exercise to be a cause of kidney cancer:

https://www.youtube.com/watch?v=Hnxqc4sT85I&ab_channel=Chubbyemu

And boy did I like squatting. Again though, I don't think there's a link. Just speculation and no way of knowing.