My name is Emily, I’m 40 years old and live in Cheshire with my wife. In May last year I started on the keto diet. I mention this, because I have since done some research and found it is possible for tumours to grow on a very low carb, high fat diet. I wonder; did this cause mine to start or grow? I don’t know.

I managed to lose 2 stone, working in my usual job in care and was feeling good.  My wife and I went on holiday to Turkey in September. I wasn’t going to stick with the keto diet when I was away as I love to eat Turkish food. So, I went back to eating normal meals.  As it was 36-40 degrees and we did a lot of walking I made sure to drink as much as I could.  When it came for us to leave my legs and ankles were very puffy. As a result of a previous pulmonary embolism I put my surgical stockings on ready for flying, and didn’t think anything more of it.

Fast forward 2 weeks after returning home and I was getting a lot of pain in the centre of my chest and below my right shoulder blade. Especially after eating. I tried pain medication; nothing would shift the pain. It would also radiate to the right side of my back in the kidney area after taking ibuprofen.  I am very stubborn and took a while before my wife eventually talked me in to going to my GP, she booked an emergency appointment and off I went.  The GP suggested I had a gallbladder infection and I was sent to hospital.

At the hospital they ran tests, bloods etc. They decided the best action was for an ultrasound the next day on my gallbladder. Sent home with ibuprofen and told to come back the next day.  Went for my ultrasound scan, technician there did the scan, we then waited on the ward for the results.  We were told my gallbladder was fine, however they had found a 6cm mass on my right kidney.

The word “mass” immediately sent fear through my wife and I. We were told a CT scan would be booked as soon as possible to further investigate.

Two weeks later we went to hospital for a CT scan. All the time I was feeling very unwell and gradually in more pain and getting worse. Nothing was helping at all. I got my results after 3 weeks and was informed I was to have another CT scan to give the urology team more information about my condition. The letter told us I had a mass on my kidney, and they were unsure as to it being malignant or benign. One week later we were off for a second CT scan.

I had a phone call from hospital urology department at the end of November asking me to come in as soon as possible to discuss the results, preferably the next day.

My wife and I went in together, not sure what we were going to hear, but knew it couldn’t be good as they didn’t want to wait to tell us.  “You have what we call a Bosniak grade 3 mass on your kidney. This is at the least an 80% chance of cancer.”

My wife and I sat at first in silence. I had just lost my beloved grandmother to cancer, it started in her kidneys but by the time they found it, it was too late for her to have any kind of treatment. I felt I had been hit by a truck. We sat with the consultant, my wife comforting me, all I did was cry, she asked all kinds of questions, I couldn’t even think. He was fantastic with us and told us to take as long as we needed. He said a partial nephrectomy was what he recommended so he would get that organised. As it was coming closer to Christmas, he was hoping it would be done soon after.

I was on Facebook that evening looking about to see if there was a support group for those with kidney cancer and I found the Kidney Cancer Support Network (KCSN). I joined up and the help, support and advice I received was fantastic. I would recommend this group to anyone looking for help. I didn’t feel so “alone” anymore, such a helpful, friendly group. Any questions I had from surgery itself to recovery have always been answered by those who have been through it all.

At the beginning of December, we met with the surgeon who would be doing the operation, he had measured the “mass” at 7.1cm so it was growing. He suggested around 40% of my kidney would be taken. One week later I had a phone call. The hospital had a cancellation; I was hesitant at first, but I took it. My surgery was on 23rd December. I just had to get it out and be pain free. I didn’t want to be in over Christmas, but I wanted badly to feel well again. I was in so much constant pain and felt so unwell. I have been told my face and skin was very grey.

I went for my surgery and it went well, approximately 3 hours in total. Six small scars, 26 staples and done by robot-assisted laparoscopy. Approximately 10% of my kidney was removed along with the “mass”. I was home on Christmas Eve. The surgeon phoned my wife after my operation and told her the “mass” was a challenge to remove as it was an odd shape and bigger than scans showed.

I’m now 8 weeks after surgery. Healing well and have some slight pain in my kidney at times. I have had a letter from the consultant. I opened it and prepared myself for the possibility of bad news.  It was good news. I actually had what is called an “adult cystic nephroma”; apparently very rare. No further treatment will be needed. Yearly blood pressure checks and blood tests and that’s it. We are so relieved that our journey has ended. It had taken so much out of us both emotionally and mentally, I wouldn’t have done as well had I not been a part of the KCSN support group on Facebook. Thank you all.

 

My name is Gemma, and this year my husband Jerry and I will have been married 25 years. I am 64 years old, but my journey began in 2008 when I was 53. We got married in the knot garden in Old Basing House in 1995, as we are English Civil War re-enactors, and have a strong connection to the place. However, we left all that behind in 2003 when we escaped to France, and then onward to Nova Scotia, Canada, and beautiful Cape Breton island in 2006. We took our menagerie with us; a dog and 3 cats, and we settled in well, life was good.

Important to note at the outset that my cancer journey is complicated, in that my heart had a lot to do with what happened to me, and is relevant to my story.

In early 2007, I was working extra hours and ultimately neglecting myself, and found myself with pneumonia, and diagnosed  with paroxysmal supraventricular tachycardia (PSVT), a heart arrhythmia. My consultant felt that medication would control the arrhythmia. When I saw the consultant again in 2008, I said I was concerned about a 20 pounds weight gain. I felt the heart meds meant that any extra fluid would be excreted, but he didn’t concur with my oedema theory. He spotted a protein in a blood result from the previous year, and asked if anyone had mentioned it. ‘No’, so he suggested one more test. I had an ultrasound in August, and while there they suggested a CT scan with contrast dye, saying it was because I had come a long way for the appointment. The following Monday my GP called and wanted to know ‘Is anyone taking care of you regarding the suspected tumour?’, and that is how I found out about my kidney cancer. My GP assumed I had seen the specialist and wanted to be sure someone was scheduling next steps. He referred me to a urologist in Halifax, Nova Scotia, who I saw in September. He suspected it was RCC, and would do a laparoscopic nephrectomy, which was scheduled for October.

Since Halifax was a 4 hour drive, we stayed at ‘The Lodge that Gives’, provided by the Canadian Cancer Society. I had my pre-op a week before, where I saw so many anaesthetists  about my heart arrhythmia. It was all in my notes, that whichever anaesthetist was scheduled for my surgery, there was no need for me to worry. So the 20th October arrived, and we walked over to the hospital, (QE 11 a teaching hospital attached to Dalhousie Medical School) and was ready in my gown by 7am.  I waited for 4 or 5 hours, and finally someone came for me, and my husband was told they would call him when I was out, so he went off for lunch. They asked if I was OK to walk, so I walked down to the OR, and was put on a trolley outside the room, and another hour passed on my own on this trolley. Finally there was some activity, mops and buckets and blood comes to mind, and a departing team with patient off down to recovery I presumed. Then I was surrounded, apologies for delays, previous surgery had over run, signed consent forms, confirmed which kidney was being removed, and a X on the back of the relevant hand.. I remember saying, but what if I got mixed up.. So again asked if I was OK to walk, so off the trolley, into the OR, and onto the OR table. Preparation was going on around me, I had a needle put in the back of my hand, the same hand with the X on it, something to mellow me.  The consultant came in and asked was I OK and ready, I said fine, lets get it done, and then the mask was almost on my face, they were saying about counting down from 10, but then suddenly, ‘I’m sorry your surgery is cancelled, we will let your husband know, so he can take you home’.

So for the first time I noticed my heart was in major arrhythmia, but I was upset, crying, in a total panic over them leaving the cancer inside me. Due to the pre med, I had to be taken into recovery, and I had people trying to get me to calm down so my heart would calm down. They said it was the anaesthetist that had cancelled, as he was not comfortable with how my heart was behaving when we were about to begin surgery. After seeing so many, I had got a nervous one, but I suppose better safe than sorry. So as I began calming down I heard one of the doctors on the phone discussing me. He was trying to get Cardiology involved, because in his view the same would happen next time. This doctor was a 5th year intern, and I will always be grateful for him pushing the way he did. Once my heart was out of arrhythmia, I was taken to my own room on the ward, where my husband was waiting. They told my husband that he may as well go home, and leave me in their care. Cardiology said that they would schedule me for a cardiac ablation, and with talking to her, I discovered that my fainting since I was 7 years old was down to these faulty cells causing the arrhythmia, but that the pneumonia my first winter in Canada had somehow made it worse. I was re-scheduled for my nephrectomy on the Saturday, so the ablation was happening on the Friday. I was on the table for 5 hours, they discovered the dodgy cells were in the left side of my heart, and would require blood thinners to avoid a clot.. but my urologist didn’t want that in my system for the next day’s surgery, so the procedure was stopped.

The following morning, the team of interns came by on ward rounds, and told me my surgery was cancelled, as the OR was being used for transplants, but that I would be put in front of the list for Monday. So Monday came, I was fetched early, and straight into the OR, no time to think, or worry, and he found a confident anaesthetist. I saw my GP after coming home, who confirmed a diagnosis of RCC, 3.5 cm, Stage 1 and Grade 2, encapsulated, boundaries clear. It was a few months before I returned to see my consultant, so was happy to get the result from my GP.  In the January I returned to Cardiology this time, and although it took them two tries, the 3rd cardiac ablation was successful, and that is the day my heart went quiet. My weight took about 3 months to return to my normal, but to this day, no doctor would say that it had been oedema or connected in any way to the cancer.

The following year, I was referred to a doctor regarding high cholesterol, and it was the same doctor that arranged the ultrasound. So it was like a reunion, hugs all round, I thanked him for persisting, for thinking outside the box. He was also a teacher, and he said my case had become one of his case studies, ‘that protein marker had meant something’.

In 2016 we returned home to the UK, and I have had another 20 pound weight gain, but after months of tests and scans last year, they have found nothing, and the weight is stubbornly still there, but now at 64, I am more accepting of it.

What I found helpful in the early days in Canada was ‘Kidney Cancer Canada’, and Deb Maskens (their own Rose Woodward). I also looked for support through the cancer society, I went to support groups, I also spoke to a volunteer who had been there. They talk to you, and based on your history, they match you with someone (a volunteer) with a similar history. They call you to have a chat whenever you want. I also participated in the Relay for Life in our town every year, proud to be a survivor. My sister, who was outwardly quite supportive at the time of the surgery, later said I had not really had cancer, as I only had surgery, and didn’t have any treatment, and that made me feel like a fraud, but fellow survivors at RFL showed me that I was part of the survivor family. My sister also said that the 3 cardiac ablations were not surgery, even though they involve you lying still for 8 hours, and awake for the whole procedure. I also joined a group called ‘Red Hats’, and many were survivors too, but it was just about socialising, eating drinking and dancing with friends, and getting to wear a Red Hat, lots of fun.

After the first year, I saw my consultant every year, and after 5 years he said he didn’t need to see me again, but I said I wasn’t ready to let him go, and he did the same the next year, but after that he just re-scheduled me. In my final appointment he spotted a kidney stone in my remaining kidney, he was able to look back at the few CT with dye to see it was there from the first one, but was now double in size. So I came home to the UK with a mission to get that dealt with, which took some time, but that is now gone. I was in Wales initially, but now in England, and with the tests last year, I saw a different consultant, and he was quite adamant that he wouldn’t need to see me again.  However, my GP has confirmed that he can request an ultrasound and chest x-ray for me every year, that it doesn’t require a consultant to do that, which has put my mind at ease.

Over the years I worry less about scans, I realise that when I get the date, worrying won’t change the outcome, when I have been for the scan, and am waiting, because then I know someone already knows the outcome, and I get a little impatient. But again, I try to not worry, until I know there is something to worry about.

On a personal level, our adventure continues, as we are living on a narrowboat. This year we are heading back to Corfu for the first time since our honeymoon, life is for living,

My husband has been there through all my medical dramas, all the times he had to work, and left me in a hospital 4 hours away, having to take care of our menagerie. Last year having to cope with my terror that the cancer was back, but he understood, he knows better than anyone that if I had ignored my weight gain back in 2008, then the story would have a different ending. If you read this far, if you take nothing else from this, you have to be your own advocate and persist until you get answers.

Our story. Firstly, my husband Ricky Casey – my very own hero. Also a Greater Manchester firefighter!

Unfortunately, our story doesn’t have the fairytale ending that one imagines when we meet the love of our lives. Ricky asked me to marry him in Spain, September 2017. I was the happiest girl ever. We were busy making wedding plans for 2019 and enjoying life, when in March 2018 Ricky started feeling unwell. It started with a dull ache in his left testicle. That didn’t seem to cause too much trouble at first, because it was sporadic. But after a couple of weeks the ache got stronger and was constant, along with a loss of appetite and pain in his stomach. Ricky’s first visit to the GP resulted in a course of antibiotics. The doctor seemed to think this was a completely common thing in men. While on antibiotics, Ricky’s testicle started to swell intermittently. He was feeling bloated all the time and he lost more weight.

He went back to the doctor feeling concerned, but the GP said he just needed to try a stronger antibiotic. The GP couldn’t feel anything wrong with his testicle and sent him away again with more tablets. Ricky wasn’t improving; in fact, he lost more weight, started to get an ache in his stomach and flank, lost his appetite, and the pain was waking him up in the night now.

On his third visit to the GP, we saw a different doctor who we pushed for an ultrasound scan. Eventually! But in the meantime, while we were waiting for the scan appointment, I had to take Ricky to A&E because his pain became unbearable. At the hospital, Ricky had his first set of blood tests. But again they sent us home with pain killers saying they thought it sounded like he had kidney stones. We were told to wait for the scan and he may pass the stones by then!

Ricky was really suffering with pain and trying to carry on. By the time Ricky had his first ultrasound scan it was May 2018 and we waited more than 2 weeks for the results! Ricky was still at work full time and struggling with the pain and suffering. I still don’t know how he did this. At the beginning of June, we went back to the doctors for the results of the ultrasound scan. The doctor decided to send us to the hospital for a chest X-ray and bloods because Ricky had developed a cough that wasn’t going away. Ricky was still taking antibiotics and his symptoms where getting worse, not better. Every time he ate he was uncomfortable and bloated. He had pain and aches in his testicle and stomach, sweats and he had an awful cough. The chest X-ray didn’t pick picked anything up at this point, but Ricky was due to have his first CT scan beginning of June.

At the end of June the results showed an enlarged kidney. By chance the CT scan picked up a shadow on the bottom of the lung. This needed further investigation. At the end of June, Ricky was working the moorland grass fires and these were his last days as an operational firefighter; he wasn’t fit for work anymore and unfortunately had to be pulled off the job. This devastated us both realising how poorly he was. In the meantime, we received a letter discharging Ricky from urology suggesting he may have lymphoma. This was our first diagnosis; from kidney stones or infection to now this. We were referred to a haematologist to then find out it wasn’t lymphoma and were passed over again.

Beginning of July, Ricky had a chest scan and an appointment at the respiratory department for the results at the end of July. Obviously, the doctors were still unsure about the diagnosis. So more bloods and further tests. The doctor decided to do an emergency lung bronchoscopy while we were at the hospital. They detected a large gland in his chest and smaller ones in his lungs and neck that showed up from his previous scans. They decided to take a biopsy from the lung since this was less invasive than a kidney biopsy. They first thought it was lymphoma because the kidney and neck masses appeared similar and we would need to be referred yet again to another department. Ricky then had another biopsy taken from his neck. At the end of July the doctors were still trying to diagnose Ricky’s condition. Ricky’s kidney function had dropped and the bronchoscopy detected another tumour. We were told that the doctors couldn’t decide which type of cancer this was (unknown primary cancer) and were struggling to come up with a treatment plan. They needed to run further tests and multidisciplinary team (MDT) meetings.

A couple of weeks after the MDT meetings and scans, they decided they thought the primary was in the kidney and had spread to the lungs. And from that meeting decided to take Ricky in for an emergency kidney biopsy the following morning. This was the beginning of August and Ricky was obviously still suffering and declining through the months, and was no further on with starting treatment and a diagnosis. They discharged him from hospital and on 15th August we had our first appointment at the Christie Hospital with hope that they had a plan of treatment and definite diagnosis. We were so frustrated and frightened by this and months had passed. The outcome of the appointment wasn’t what we were expecting. I can remember this day so clearly – to be told your husband had a rare form of kidney cancer called renal medullary carcinoma (RMC) that is linked to sickle cell disease and the doctors didn’t really know enough or see enough people with this cancer. Treatment is limited and he was already at stage 4. Also we were told that surgery wasn’t an option and the kidney couldn’t be be removed because of the size and complications this would cause. This was proving to be complicated across the board.

We had to wait until the end of August to start chemotherapy due to the results from ongoing tests that were needed for the treatment plan. This was obviously making us anxious because we wanted to get going with it; months were passing and Ricky was getting worse. When Ricky started treatment at the end of August, he had a very positive outcome to the first cycle of chemotherapy. All his tumours shrank by 60% and this type of cancer is supposedly chemo-resistant. So you can imagine that we were over the moon and we had hope.

We decided at this point to get married in December; the year before we were due to marry. We both felt the time was right and why wait? Ricky started his second round of chemotherapy, which showed no changes. Ricky started to pick up more and more infections and didn’t seem to be as well. After discussions with the doctor, the only option was to watch and wait and keep an eye on how Ricky was doing, which was devastating to hear. It was like everyone had given up on us. Alternatively, we could apply for a drug that had been recommended by the oncologist. This was a difficult process and took some time; time that we didn’t feel we had.

It was January 2019 and we were married. We decided to go on our honeymoon while waiting. This was something Ricky really wanted to do even though he had started to struggle a little bit more. On returning home we found we weren’t successful in our application for the drug recommended by the oncologist, which was refused on grounds of no evidence that the drug would work for Ricky. We could pay for the drug privately, and we were already raising money to fund the drug in case this was the outcome.

Ricky was struggling more and more with his breathing at this point and felt weak. He was taken into hospital with a chest infection and after further investigations diagnosed with a rare form of fungal pneumonia, which is very difficult to treat and which he may have had for some time. He went into hospital in March and declined from then on. The cancer was so aggressive and had been left untreated to grow and spread. Ricky’s lung collapsed and he became very poorly. But again, he was a true fighter and tried to remain positive throughout. Ricky and I sadly lost our fight on the 1st of May 2019.

As his wife, it was a 24/7 battle; no giving up and no negative thoughts or vibes, which Ricky 100% got on board with. We were a couple and giving up or losing was never an option. He was a hero, I was his rock! It was, and still is, a massive shock that we lost because as a couple it was never going to happen to us, never. Right until the very end, we were talking and making future plans daily. It’s so hard and difficult to see the person you plan to spend the rest of your life with change before your eyes and then pass away so suddenly, and I couldn’t do anything. I felt it was a constant push and battle to move things on quickly, and had to be a constant pest to doctors. Research took over my life. I practically gave up my work to look after Ricky and try to keep him healthy in mind and body and to be with him always. It is tough to keep yourself and the love of your life positive. This was a very quick and sudden change of life for us and it all happened so fast; 9 months in total. This is a massive thing to come to terms with for me and still feels unreal. And now suddenly alone, left without my husband. I honestly do feel early diagnosis is key. If the doctors had acted quicker and recognised the symptoms and signs of this disease, and if we had been able to have the drug, Ricky may have been with me today and had better quality of life and years. It has left me with feelings of anger and the need to help change things and help people in Ricky’s memory.

Thanks for taking time to read my story.
Nicola Casey

In November 2017, I’d just started a new job, and after a busy weekend working on a stand at the NEC I had some left side/groin pain – something I’d had earlier in the year but was passed off as ‘one of those things’ by my GP after a urine test. But this time it hurt like nothing I’d experienced, and pain killers were not touching it. My GP sent us to the day assessment unit at Northampton General Hospital for a scan – maybe kidney stones? A long and painful day and a CT scan revealed ‘something’ on my left kidney. A contrast scan the next day revealed a 7 cm tumour and a lot of affected lymph nodes. All over me. I was left in no doubt that this was very, very bad. Some of the registrars just didn’t seem to be able to relay this with any empathy – thank heavens for a practical consultant and good nursing staff!

I saw a renal surgeon fairly promptly. He made it very clear that this wasn’t curable, but thought that removing the kidney and tumour would give me the best outcome possible. It was then a nightmare of tests, delays and a biopsy (that proved pointless) before I was finally offered surgery in February 2018. Mr Potter is a great surgeon and managed a laparoscopic nephrectomy, even though it took six hours – not that I noticed but scary for my family.

The first couple of days were miserable afterwards but getting home on the third day was a big help. I did manage to return to my desk job (and short drive) after 4 weeks, which is a little unusual, but it does depend so much on your health and fitness. At the end of March my surgeon confirmed type 1 papillary RCC, PT3A, Fuhrman grade 2, and that this was a less common variant.

I saw the Head of Oncology at Northampton after another scan in April and was unimpressed! I was offered sunitinib (as there was progression on the scan in the lymph nodes) but with the clear impression he didn’t think it was likely to work. Trials were mentioned but they only seemed to know about PRISM which wasn’t available for papillary patients. I was promised by the Macmillan nurse that she’d find out about other trials, but you do learn very fast that if you don’t fit the clinical trial criteria, the NHS system can be distinctly unhelpful. She certainly was.

With some of my own research and some support from KCSN, I tracked down a relatively new TKI drug that looked promising for papillary RCC – savolitinib – and then found that there was one trial in the UK that incorporated it (along with MEDI4736, an immunotherapy drug) called CALYPSO. Armed with this information I got a quick referral from Northampton to Professor Patel at Nottingham.

I started the trial at the end of May and to date (August 2019) it has worked out amazingly for me. After a big initial reduction, things have been stable/slightly reducing on every 8-week scan. Side effects really haven’t been a problem (some itching and swollen extremities) and I worked all the way to the end of my contract without needing time off apart from the review/treatment every 4 weeks. Hats off to my employer on this count – my colleagues were incredibly supportive, and my managers allowed me all the time I needed for appointments.

It has been incredibly difficult emotionally for me and my family, and it has taken me quite a long time to accept what is happening and avoid bursting into tears when discussing any future event! I’m so grateful for the trial, which has allowed me to reach some equilibrium and enjoy life again. We’ve been able to retire gracefully and make some plans for the immediate future that are really exciting. I only wish more could have the opportunity – although my trail is still running (I will continue to be treated while I stay stable), it stopped recruiting papillary patients just after I started.

What I’ve learned is how important it is to work with a medical team you can trust and getting surgery/treatment underway as soon as you can. Initially, you really do have to make a nuisance of yourself, keep notes on everything that’s said or promised. Use the hospital PALS if you need to – don’t just accept what you are told if you don’t think it’s right. We’re so vulnerable and trusting at this point, but not every medic is a saint with a good memory!  Once you and your treatment team understand each other, things get so much better. I never thought I’d ever consider myself lucky a year ago, but I can assure you I do!

I follow the KCSN group on Facebook and contribute when I can – I’m particularly conscious of that initial hammer blow and try to make sure that the newly diagnosed know that there is hope and support as soon as they post. I know lots of others try to do this as well and I know from personal experience how much this means. As I have something of an academic background, I do keep tabs on what’s going on in the field and try to share whenever I think it is appropriate. Sometimes you do need to take a break though – it can be harmful to get upset by things you can’t control.

My final advice is to get a motorcycle. OK, maybe this is not for everybody, but, seriously, find something that allows you to disconnect from the world and focus on physically doing something for a while: playing music; reading; drawing; yoga; puzzles – stress makes everything so much worse. ‘Mindfulness’ is a posh word, but it works.

 

 

My name is Mark Heason. I’m now 60 and I was 59 when I found out I had kidney cancer. I’ve been married 35 years and we have two fantastic sons aged 29 and 26. I worked for Lloyds Bank for 35 years, predominantly as a commercial manager and after this I worked for 7 years supporting young adults with learning disabilities. I retired at 58 expecting a long and healthy retirement. I’ve always been sports mad and, as a result, very fit. At the time of my diagnosis I was playing golf twice a week, going to the gym regularly, running the local Parkrun and walking our spaniel. I’ve never smoked, drink moderately, have a good diet and I’m not overweight. As you can imagine, I did not consider myself a candidate for kidney cancer!

I found out I had kidney cancer in early May 2018. Right up to this point I was very active. I woke up on a Saturday morning with pain in my left side and a lump which had suddenly appeared. The following Tuesday I saw my GP and on the Thursday saw a urologist at my local hospital. I had an ultra sound scan and CT scan the same day and pretty much straight away they told me I had a 17cm cancerous tumour attached to my left kidney. On 25th May I had an open radical nephrectomy to remove the tumour and kidney, a 4.5 hour operation. Post op the urologist told me that when he started the op he discovered the tumour had ruptured and filled with a litre of blood. He had to drain this before he could remove it. Looking back now, it would have been even longer before I realised I had kidney cancer if the tumour hadn’t ruptured given I had no other symptoms.

Next time I saw the urologist he told me there were some remaining cancerous lymph nodes in my stomach and chest. These couldn’t be removed during the op, but would be treated with drugs. At this point I had a very positive mind set. I had an otherwise healthy body and I thought the drugs would get rid of the remaining cancer. It wasn’t until I met the oncologist for the first time in early July that the reality of my situation came crashing down on me. He told me, very matter of factly, that I had stage 4 papillary renal cell carcinoma, a rarer cancer. He would prescribe me drugs which would not cure me, but hold the cancer at bay for as long as possible. He was loathe to discuss prognosis, but I Googled this later and established it was poor. My friends at KCSN tell me not to believe Mr Google!

The oncologist put me on my first line of treatment, sunitinib. I did not question this and assumed it was the best course of action. It was about this time that my mindset really changed. I became more inquisitive and really researched everything that was happening to me. The NHS provide a great service, but there’s plenty more you can find out that they don’t tell you. I joined KCSN and this has been so helpful. They taught me to manage my care. I just wish I’d found the group earlier! As an example, on sunitinib you are put on a 4 weeks on, 2 weeks off regime. This is a tough drug, with multiple side effects. Through a colleague on KCSN, I discovered the 2 weeks on, 1 week off regime, much easier to cope with and hadn’t been offered by my oncologist. He did approve it, though. KCSN has also helped me to find solutions and alternatives for coping with side effects and it’s a safe environment for sharing emotional thoughts. Through somebody else on KCSN I became aware of the Calypso trial, for which papillary sufferers were initially eligible. By the time I finished on sunitinib in December, the doors to that trial were closed. If only my oncologist had advised and offered it to me I think it would have been a good route.

My next drug, which I started in early February 2019, was cabozantinib. I’m currently still on this. It’s not as harsh as sunitinib, but there are significant side effects. There are no breaks in treatment except for the odd one or two day break when toxin levels build too high. As at August 2019 I’m still on this drug, but my oncologist has dropped heavy hints that he will likely move me to my third and last line of treatment before long. In my time so far on drugs, I’ve had no further spread, but the existing cancer has continued to grow. There is a formula the oncologist uses to establish when a drug is not doing well enough and it’s time to try another one.

With papillary cancer being a non-clear cell cancer, which represents only around 20% of kidney cancer sufferers, it feels like there are far fewer options. The experts know far less. There aren’t as many lines of treatment and there is a distinct lack of clinical trials. It’s difficult not to feel discriminated against. For example, there are newer immunotherapy drugs now available to clear cell patients that aren’t available to non-clear cell. When you see the success these drugs are having, I wonder why we are not being given the same chance. Life is precious.

As I progress, I’ve physically felt my body change. I’ve lost weight and have far less energy or strength. Mentally it’s become harder to cope with the worry and uncertainty. My biggest worry is leaving behind my wife and two sons and the sadness this will cause. I’ve had counselling with a local hospice, which is good as I don’t want to be constantly talking about cancer with my family. It’s now also proving more difficult to fill my days. I’ve had to scale back previous activities as I get weaker. I read more and plan smaller bite size activities. Also many of my friends have rallied around me since diagnosis. They phone me or we go out for coffee/lunch. This has been fantastically helpful.
I haven’t set out to make my story a bleak account, but whichever way you look at it, it’s been the worst 15 months of my life. My future plans have changed forever. In fact it’s hard to plan ahead because of the uncertainty of how I will feel physically on any given day. I’ve learnt a lot about myself and I’m proud that I have at least tried to start each day with a positive mindset.

Hi, my name is Andy and I am 30 years old. I have been on my kidney cancer journey for 8 years now. I was diagnosed just a few weeks before my 22nd birthday. My symptoms started aged 21, in 2009. I was fairly fresh out of university and was living with friends in Clapham at the time. I had, for a few weeks, been feeling under the weather and had developed a slight swelling on the right-hand side of my abdomen. Like any 21-year-old enjoying my London graduate life-style, I told myself this was nothing to worry about. I remember being on a night out in London with my friends and needing to go home early due to feeling unwell. When I got home I was suffering with awful pains in my right side, to the point I thought I was going to pass out. That was the closest I have ever come to calling an ambulance for myself. The pain eventually subsided, and I fell asleep, but the next morning when I went to the toilet, I was shocked to see that my urine was a deep, red wine colour. I called my flat mate and long-time friend into the bathroom to have a look, and he insisted I get myself to the doctors (as we were both pretty sure it was blood). My GP didn’t seem too concerned and suspected I had kidney stones. I was sent to see a consultant, who shared his suspicion that I had kidney stones; however, he was also puzzled by the large swelling on the right-hand side of my abdomen. I was sent for some blood tests and my first ever CT scan.

Having had my mind set at ease somewhat by my GP and the specialist, I was called to collect my results and went along alone, suited and booted, ready to head straight into the office after my morning appointment. On the way to my appointment, I received a phone call directly from the consultant checking that I was on my way. I remember thinking nothing of it at the time, as I had my scan done through my insurance and thought this might be the standard process at a private clinic. It was during that appointment that I received the news that I had a 16cm malignant tumour on my right kidney, the size of a large grapefruit or size 1 football. At this point my world stopped. Everything else the consultant said to me was just a haze, like I was walking around in a day dream, having some sort of out of body experience. The only two questions I managed to utter to my consultant were ‘Do I have cancer?’ and ‘Am I going to die?’.

I was in such a state of shock that I caught a train out of London, to my family home in Bexley. I rang my Mum on the way and asked her to collect me from the station. She knew I had the appointment and she knew something was wrong. I got in the car and just sobbed the entire way home, we didn’t speak, I didn’t tell her the news, she just drove with one hand on the wheel and one hand holding mine.

The next few days were dark for me. I slowly told my close family and friends the news, and went for further scans at the hospital. This period was not helped by the fact that on one trip to my local hospital I managed to pick up a norovirus which made me throw up for almost 48 hours solid. Balls were put into motion to get my kidney and tumour removed as soon as possible, and within 3 weeks of the first appointment I had a right nephrectomy and was recovering in hospital.

In the months that followed I was referred to a Urology Oncologist, who is still my consultant to this day. After my first scan, it was noticed that there had been a small amount of spread to some lymph nodes, which then kicked off my first experience of immunotherapy.

Later that year I underwent four weeks of intensive immunotherapy treatment called interleukin 2 at St Barts Hospital in London. This was by far the hardest treatment I have ever endured, and once it was finished had lost almost 2 stone in weight. This treatment was however, worth the suffering as in the January of 2011, just under a year after diagnosis, I received an all clear on my scan post the treatment and entered remission.

I celebrated by putting a deposit down on my own flat and enjoyed my all clear period a for about two years before I met my now wife, Charlotte, in November 2012. I was upfront with Charlotte about my previous treatment and told her I was still having regular scans to check for recurrence. We enjoyed a weekend break together to Rome in early April 2013, and following our return I collected the results of my latest scan which had taken place in February. Unfortunately, the cancer had returned. Telling Charlotte, my girlfriend of only 4 months was awful. She was only 22 at the time, I was still only 24 – I gave her the option to walk away, given that our relationship was in such early stages. She refused, and needless to say our relationship became quite serious quite quickly after the diagnosis – there seemed no point in beating around the bush anymore!

I started axitinib in May 2013 with a view to shrink my new tumours for possible surgery. I found the side effects very hard going, and that entire summer is something of a blur as I spent my days inside the flat with the blinds closed. I suffered badly with fatigue, diarrhoea and also hand-foot syndrome. Charlotte moved into my flat in August 2013, with a view to being around to help me after my surgery to remove two further sites of growth near to my bowel and in the kidney bed area, which took place in September. The surgeons were confident they removed all the cancer at the time, but unfortunately some had stuck around. I underwent radio-frequency ablation therapy (RFA) in March 2014, which was performed under general anaesthethic, and continued axitnib until we received the news that it had stopped working in November 2014. The bad news didn’t get the better of me though, and I proposed to Charlotte in South Africa a few weeks later. We continued axitinib in the hope it would work again, but ended up needing to swap to everolimus in March 2015.

Everolimus was a drug that did not work for me at all, and unfortunately, the cancer progressed and so I switched to pazopanib in August 2015. Pazopanib worked for 7 months. I found the side effects more tolerable than the previous drugs I had taken – with the side effect that affected me most being the change in hair colour. My hair changed completely from very dark brown to bright white (including eyebrows, eye lashes and body hair!). I owe a lot of different women in my life thanks for helping me dye my hair during those months!

Pazopanib stopped working for me in March 2016 and I started on nivolumab in April – just a month before my wedding to Charlotte. Having spent years taking various different drugs, nivolumab was like a breath of fresh air. It was not taken orally, like most of the other drugs I had taken, and I had to go to the hospital every two weeks for an infusion. However, I experienced barely any side effects. Charlotte and I took the opportunity to make the most of my increased energy, with lots of holidays. I took nivolumab for 8 months, although this was split over an 18 month period as I had to take a break whilst being treated for an unrelated neurological disease that I was diagnosed with in August 2016. This 18 month period was not all plain sailing… during December 2016 and January 2017 I had four admissions into hospital with infections and bowel troubles and a colonoscopy revealed a very large tumour in my colon, which had been missed on my regular scans. A colectomy was performed in January 2017, which resolved my bowel problems and I continued on with nivolumab.

In August 2017, I started to lose a lot of weight and my September scan date was brought forward. As suspected by my consultant, nivolumab had stopped working for me (hence the weight loss) and my cancer was on the move once again. I started on 40mg of cabozantinib in September 2017, but this was increased to 60mg in December 2017, when the results weren’t quite as hoped. Cabozantinib has since stabilised all of my tumours – knowing this makes the difficult side effects much more tolerable.

I have been lucky enough to be on this drug for 6 months now (and I am hoping for many more). I have met so many different specialists and consultants over the years, and one thing they have in common is that they always comment on how young I was to have been diagnosed with kidney cancer. I was not the ‘typical’ kidney cancer patient, being aged 22, fit & healthy. This just goes to show how important it is to recognise signs in your own body when things don’t seem right, as even my initial doctor did not suspect my diagnosis.

The last 8 years have been a huge journey, but amongst the side-effects, hospital admissions, surgeries, there have been some great highs and it is important to remember that a diagnosis of advanced kidney cancer, doesn’t mean that you cannot enjoy life. I am thankful to have worked for three incredibly understanding employers, who have supported me fully throughout all my journey and have allowed me paid time off sick and flexible working where required. I am currently working 4 days a week, with one of these days from home. This enables me to lead a life as normal as possible. We know that I won’t get better, but the treatments and care I have had over the years have enabled me to enjoy amazing holidays, get married, buy a house with my wife, get two cats and create memories with friends and family.

My day-to-day life now consists of doing everything a normal 30-year-old married man would do. I work four days a week, sometimes five. I go out and see my family and friends. I go and see my beloved West Ham every other weekend as a season ticket holder. I regularly go on holidays with Charlotte to fantastic destinations. To the outside world I am normal. However, all the normal things I do are shaped by my illness and the side effects of my drugs. Every day for me is a battle against the sore itchy skin, hand-foot syndrome, relentless fatigue, diarrhoea, fluctuating appetite and weight, tongue ulcers and not being able to eat the food I want to eat, and my hair slowly turning white. My life is a constant battle, every day of the week, and this illness throws hurdles in the way of everything, but my view point is that every day I must leap over those hurdles, with a smile on my face so I can live my life to the full, because if I didn’t, it would not be worth living.

KCSN has been a huge support to Charlotte over the years, and I am very grateful that she found them. By nature, I am not a talker (and prefer to deal with things by pretending they aren’t happening), but Charlotte has found a lot of support through their Facebook site, which has been invaluable to her. Over the course of my treatment, she has often known about the different options available to us before we have spoken to my consultant, and this information has come directly via her involvement with KCSN members.

I hope my story has shown that a diagnosis of advanced grade 4 kidney cancer does not just effect ‘older men’ and it does not mean you cannot enjoy life. Of course there will be obstacles to deal with, but there are lots of different treatment options available and many more trials on going now. We don’t know what the future holds for me or my treatment options, but with two holidays, three stag do’s and three weddings planned for 2018, it can’t be too bad.

 

My kidney cancer story starts by having no symptoms, but a wife who told me to go to the doctors. Mainly because she was getting a disturbed night’s sleep whilst I was peeing for England during the night. So, as all us men do, I duly obliged. I just happened to take a urine sample with me. The doctor did a quick test and announced I had blood in it, despite never seeing any. So they took blood to test for prostate problems.

A few weeks later I had a letter making an appointment for a camera to be inserted into a place where a camera should not go!  Every test was coming back normal, but 2 week further on they sent me for a CT scan, and this is where the story really begins.

The crushing news was that a 3 cm tumour was on my left kidney. The hospital decided that a biopsy would be difficult to get, so they said they would remove the tumour and then tell me if it was anything to worry about. They said the operation may be keyhole, but they may decide to take the whole thing out. At this point I said that if my son needed a kidney I would have donated one, so what’s the difference in taking one out. I have never really suffered with stress. Teaching the morally disabled in a pupil referral unit never worried me. And having confiscated guns, knives and drugs off pupils on a regular basis; why would this cause me a problem. Afterall, I would be safer in the theatre than on the corridors at work!

The day came (December 19th 2015). The pre-op room ended up like a comedy sketch: The epidural was given and I was told to swing my legs onto the trolley. That is easier said than done when you are paralysed from the waist down. Five hours later I woke up in the worst pain I have ever felt. Somehow my sciatic nerve had got stretched. The pain was unbearable, so plenty of morphine was given and the wonderful dreams began. Then to top it all my kidneys started to fail, so I had dialysis for 5 days until they had kick started back. Whilst all this was happening, I forgot about the effects of the operation because that was causing me no problems at all. So I spent 2 weeks in New Cross Hospital, Wolverhampton, and enjoyed Christmas in there as well.

Four weeks later ….. the hospital rang to say they wanted to see me. Nothing to worry about but they were concerned about my walking. So was I! To be fair because the zimmer frame was making dents in the carpet and my wife was on the verge of organising a new carpet. The doctor confirmed that it had been a grade 3 cancer, stage T1a, but he was happy they had good margins, except one spot that he described as a non-edge, which they had stitched to destroy the cells. We went home fairly happy, but knowing scans every 6 months were on the cards. My wife duly sent messages to all those who had been so supportive, and told them that the “autopsy” had shown I had had cancer. Obviously the flowers and deepest sympathy cards were very nice to receive. We then contacted everyone again to say the “biopsy” had shown cancer and that I was still alive. We laugh at my wife, not with her!

Six weeks after the operation, I have to say there was no pain or discomfort from the kidney surgery. Although, I could tell when I had not drunk enough fluid because I would get a feeling of slight sickness. I had no visible signs of puncture wounds either. Now I get the odd twinge, even after 2 years, but it’s nothing that I even need a pain killer for. It usually lasts a minute or two and it goes. I even fell over the garden wall after about 4 months and landed on my side, which was recorded on a video we shared with our KCSN patient support group! I would also add that I feel the same now as I have for years and years. Although, it does help when you retire and your time and days are your own. The dogs also get a good walk every day in the local woods.

I am now 2 years on from surgery with the “all clear”. My mind says to me; if the first scan is clear, why would the others be any different? It’s odd really, because of all the problems I had, my leg has caused me the most problems, like in a car park, as soon as someone parks next to me I cannot get easily in or out of the car. But I realise that is a very minor problem to have, having survived kidney cancer and an “autopsy”!

Kicking off with a bit of personal bio: 61 years old; accountant, retired; married 28 years; 3 kids; 2 grandkids (freshly minted); 2 bolshy dachshunds.

In 2010 I went in for an ultrasound scan to investigate a urinary tract infection (UTI), which refused to clear up after the normal antibiotics. Ultrasound identified 2 tumours on my left kidney, each being a few cm in length, so they had been there for a while. They were removed in June 2010, and the biopsy confirmed carcinoma. Choosing the Royal Free Hospital in Hampstead on recommendation, I was placed on a trial for sorafenib for 6 months, but couldn’t cope with the side effects (like most people as I was subsequently to learn).

In early 2011, a sharp-eyed radiologist spotted a fistula connecting my colon to the bladder, down which some faecal material had been travelling. Small wonder my UTI wouldn’t go away. An operation to solve that was carried out, and thereafter I was down to regular CT scanning for any sign of secondaries.

All was good until early 2013, when an ‘area of concern’ was identified in my left lung. Subsequent biopsy of material from there confirmed a metastasis, that autumn. In February 2014 I was put on sunitinib, an entry-level tyrosine kinase inhibitor (TKI). The dosage was 50mg given on a 6 week cycle of 4-on treatment, 2-off. I quickly switched to a 2-on, 1-off cycle as more manageable, but still found 50mg tough, especially as my weight fell away. After a couple of emergency hospitalisations in the autumn of that year, my oncologist switched me to 37.5mg, which she felt could still do the primary job of containing my tumours, but be more tolerable in terms of quality of life. I have been on that dose ever since, with no evidence of additional disease; a good run as sunitinib has a median success of 2 years.

Side effects for me are significant: fatigue; diarrhoea and other gastric issues; a sense of extreme cold; thyroid problems; raised blood pressure; itchy skin; general immunosuppression. All these are manageable in different ways. For example, I have learnt that my diarrhoea seems to relate to malabsorption of fat so, as well as loperamide, I manage my diet carefully. The cocktail of side-effects that each person experiences, is unique in both its make-up and severity, and can even vary from cycle to cycle for an individual. From talking to others, I seem to be getting off fairly lightly.

The emotional side of cancer is important too. I have decided to be honest with family and friends from the start, and they make allowances for my occasionally impaired functioning. As a member of KCSN I value immensely the support I get from the Facebook page that is the closed group for patients and their partners. I don’t feel as if I’m fighting cancer. That is being done by the drug companies that develop these new lines of defence, the groups like KCSN that lobby NICE to approve use in the NHS, and the oncologists who prescribe them. If anything I am just the battlefield, occasionally churned up, but also the beneficiary.

And what a benefit. Had this happened 15 years ago I would have been long dead. Since my diagnosis I have used up my bonus years doing all the things I put off during the working years:

My wife and I have travelled to New York where I have close family; to Venice, the most beautiful city on earth, I think; to Uganda where our youngest daughter works; and back to Paris where we had our honeymoon decades ago. I went to South Africa on rugby tour with my beloved Club. Additionally I took over as President of my Club for a three year term, soon to finish. Recently we welcomed into the world our first two grandchildren, something that I might never have been alive to see. Life is busy and good.

My name is Neil, born January 1968, 49 going on 50, and living with my husband. We’ve been together over 19 years, and have a dog, Jay. We got him shortly after my diagnosis to help get me through recovery.

My story starts in 2014. One morning in late April, I went to the toilet and spotted my urine was pale pink. A visit to A&E and 2 CT scans later an 8.5cm tumour was discovered on my right kidney. Goodness knows how long that had been growing unchecked, but until that day I’d had no symptoms, I felt perfectly fine. I took the news with equanimity, very calmly. I was thinking: OK, take it out, sew me up and I can get back to normal nice and quickly. With hindsight that was far too blasé.

The right kidney was removed in June. The cancer was an aggressive one, they didn’t give me any numbers though. I was scanned 3 monthly. The 4th scan showed new bits, spread from the kidney, in my lung and next to my windpipe. I started on chemo and the new ones cleared up in a few months.

March 2016, I had a seizure; collapsed in the living room, and don’t remember it at all till I woke in A&E. Another CT scan and MRI and a lesion was found on my brain. Prescribed steroids and an anti-seizure medication, then had an operation to remove the lesion followed by something called the GammaKnife; concentrated radiotherapy. That seemed to have worked. Assuming the seizure had been a one off, the medication was stopped. Biggest issue; having a seizure meant I had to surrender my driving licence. No driving or pursuing my hobby; riding my motorbike.

July 2016, I was given the all clear, nothing was showing on the latest CT scan.

Six weeks later another scan showed multiple lesions on my brain. They couldn’t operate on that many so put me on a different anti-seizure medication. Then I had 10 consecutive days of full head radiotherapy to kill off those lesions. Possible issues with this; within 2 years I could start losing my memory. Not a good choice but it was either that or let the lesions take me out even sooner.

December 2016, I was given the all clear again. Still nothing going on in my lung and the lesions were dormant.

February 2017, I found a lump on my buttock; turned out to be an abscess. No one could tell me the cause, naturally enough I assumed it was cancer related. It was surgically drained then I had weeks seeing a district nurse to keep changing the dressing. Finally it healed, but it did take a long time. They took me off chemo for a while as it was interfering with the healing process.

June 2017, I had a second seizure; again I don’t remember it happening at all. I was watching the MotoGP, then the next thing I remember is waking up in hospital. Scans showed nothing new so no idea what had caused it. Was put on anti-seizure medicine again and so far, touch wood, that’s done its job. I have an appointment at the epilepsy clinic in December; no idea what they’re going to do with me so should be interesting.

Despite showing all clear I’m still on a low dose of the chemo to prevent anything resuming. Fingers crossed that continues to do the job.

During the past 3 ½ years my emotions have been all over the place. Initial shock, positive when I had almost a year with nothing showing, upset when the nodules were found, happy when the chemo beat them, upset with the first seizure, the lesion and loss of my driving licence, happy again when the brain surgery went well, depressed when more lesions were found then the radiotherapy, happy to find out the lesions were dormant, or dead I suppose. Throughout all this, I refer to it as my adventures, I have generally stayed pretty positive, always on the outside and pretty often on the inside. I am a great believer in keeping a Positive Mental Attitude. It’s hard sometimes but it’s either that or sit in a corner and cry, which to me would be a complete waste of whatever time I have left. I have been paranoid, worrying that every ache, pain, twitch might be cancer related.

It’s fair to say my own strength on its own could never have carried me through the last 3½ years. The support of my Husband, family, friends and my dog all added substantially to my positivity. My fellow members of the KCSN have been awesome. Being able to speak to people who have or are going through a similar thing, or know someone who is, is enormously beneficial. I needed to be reminded it’s not just me.

I do accept that my time is likely limited but equally I’m still determined to get my telegram from whoever our Monarch is in 2068.

I have had plenty of side effects from the medication I’ve been prescribed at various times. The chemo has mainly caused tiredness; sometimes I was sleeping 16 hours a day with no inclination to do anything at all. Have had stomach issues, mainly diarrhoea, which meant having another tablet to settle that down. At one point I was vomiting after every meal, so another tablet was prescribed to be taken an hour before eating which did the job.

Here and now, November 2017, I’m feeling OK. Am on 3 pills in the morning, axitinib, the chemo; lamotrigine, the anti-seizure, and dexamethasone, to protect my stomach from the others. In the afternoon I just have the chemo and anti-seizure medicine. I wasn’t drinking enough water, I upped that and my energy came back.

At my last Oncology appointment the Dr thought I might be anaemic, another one that can make you tired. I haven’t heard from him since which means I’m not. My stomach and toilet visits have returned to normal. I’m currently waiting for work to write to my Oncologist to confirm I can go back. From a keeping me sane point of view I definitely need that.

If you’d like to read about my adventures in more detail I do write a semi-regular blog. You can find it here… neilfaraday.wordpress.com

I was born in mining village in South Yorkshire early in the 1960s. I moved to Sheffield in the 1980s, got married, had kids, had a good job at British Steel.

Eventually, I got divorced and met Marie, and we were just starting to enjoy life. No children at home, no mortgage, lots of holidays, and we both had quite good jobs.

Bringing forward the story to the end of 2013. I was now 52. I banged my knee on the corner of the coffee table and fell to the floor in agony. Marie, sympathetic as ever; “Get up you drama queen, you hardly touched it.”  “No honest babe it really hurts”.  Over the next few weeks and months the knee got worse, but being a stubborn man I insisted I didn’t need the doctor, until it affected my walking.

I went to see my GP in June 2014 and he suspected cartilage issues, as I had played football for many years. I was given anti-inflammatories. After a few weeks there was no major improvement, so I went back to the GP and he referred me to Rotherham hospital. I was given an X-ray. In fact, I was given a quite few X-rays and I thought this was quite strange.

On getting home (same day) from the hospital, the phone rang – it was my GP; “Please can you attend the surgery now to discuss your results”. I though this was strange. Anyway, the GP informed us that it’s probably a giant cell tumour in the knee (a non-cancerous tumour that develops in bones). “A new knee joint will be fitted and you’ll be good to go. We’ll just send you to Birmingham for a biopsy to be sure.” On the 12th August 2014 I had my knee drilled for a biopsy. Two weeks later I got the results: renal cell carcinoma (RCC), stage 4. Further scans revealed my left kidney had a large tumour.

Now at this point I did not have clue what this meant, and bear in mind I had had no symptoms whatsoever other than my knee. Prior to this I have been healthy all my life. I suspected the doctors would fit a new knee joint, remove the bad kidney, and I could get back to work and carry on as normal…….NO.

I was transferred to the urology department in Rotherham hospital. The surgeon was very busy and couldn’t fit me in as he had a lot of other cancer cases, so he tried to get Birmingham to carry out the knee operation first. This went on and on for weeks, with the hospitals arguing about time of their surgeries. Eventually, I had a full nephrectomy of the left kidney in October 2014. Post op, while still on painkillers, I was introduced to Jayne, a palliative care nurse. This was a shock – am I dying? Why hadn’t I been told this? Anyway, I sobered up from the morphine quickly. We arranged a meeting for the following day with Marie and a doctor. They explained my 5-year survival rate was 8% – a shock like no other, I can tell you, plus I still had the more traumatic op to come.

The disease in my knee had now spread to my femur and shin bone. On 6th December the same year, I had a distal femoral replacement. This involved sawing my femur and shin bone, andinserting titanium rods and knee. These were drilled to my lower leg and hip (six million dollar man …… “we can rebuild him”).

Now, I can’t remember the kidney op being that painful, but boy, the leg op was. Especially as I had to learn how to walk, climb up and down stairs, get in and out of the bath etc.

Recovery was relatively quick – I heal well, apparently. Within three months I was back at work (office-based now) doing two and then three days a week. I was then transferred to an oncologist at Weston Park Cancer Hospital in Sheffield. I have CT scans every 12 weeks or so, and perhaps an annual or 18-month scan checking my bones.

Moving forward to November 2015. A CT scan showed metastases in my lungs and it was time to start targeted therapy with pazopanib (a tyrosine kinase inhibitor, TKI).

All was OK for a week. Then everything tasted like wood – food was horrible and I had to force myself to eat. I went for a haircut (now I have very short hair anyway) and I terrified the poor hairdresser – as she used the shears all my dark hair came off and left brilliant white roots – she was mortified! By week four, my skin was going yellow and I felt ill, really ill. Now again, me being me, I had expected to feel ill – its not good stuff! I didn’t know how ill you’re supposed to be before you say anything, so I carried on. Anyway, my district nurse called just to see how I was doing. She went mad! I explained I didn’t know any better, but she failed to see the funny side. So off to hospital overnight, tests for all sorts and I was put on a drip. No more pazopanib (Votrient).

So in January 2016 I started sunitinib (Sutent) – first 50mg, then 37.5mg, then 25mg. I coped quite well, to be honest. Results showed some shrinkage and I was stable for a year. Then in April 2017 my scan results were worse, so back up to 37.5mg then 50mg to try the maximum dose of first-line treatment prior to starting second-line treatment. My latest scan results were still not good, so I was supposed to start second-line treatment with axitinib (Inlyta); however, because of my low white blood count, I was given a month off treatment.

August 2017 and I’m feeling absolutely fantastic – no drugs for a month, the longest break since I started the treatment. I know, however, that I need to start treatment soon. Then out of the blue I had a phone call from my oncologist; “We re-checked your scan to get baseline measurements of your tumour sizes before starting second-line treatment”. It turns out the results were wrong. The increase in dose in sunitinib had shrunk the tumours a little, so I’m now carrying on at 37.5mg dosage until my next scan at least.

Overall its been a emotional journey, not just for me, but for Marie too. I couldn’t have got through it all without her constant encouragement and support. Thank you Marie.

So now I have a “new” life. Still similar to the old one, but not the same. I left the steel industry after many years and now work two days a week running a small warehouse.

I walk the dog, go fishing, ride and build motorbikes, and holiday as often as possible.

Its amazing how far you can come and what we can put up with.

Finally I would like to add a few words about the KCSN and the people who run it. Though only a “new boy” on here, I’ve been made welcome and the depth of knowledge and material I’ve found on here is greater than any other site I’ve come across, and it’s constantly being updated. The administrators are passionate about our fight with kidney cancer and very knowledgeable in their own right.

Plus it’s a great place for us all to talk about our problems and help each other, since we joined the elite club that is kidney cancer. Because if you (or a loved one) haven’t got it, you won’t understand.

Thank you for reading my story, good luck to you all. Stay strong.

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