How important is football in life?

As a season ticket holder who attends every home game and most away games, I would have always said it was part of my life and if people didn’t like that then that was their hard luck. On a Saturday I would be at the match end of, even my first child arriving didn’t stop that, I would still go every week.

In August 2016 however something happened to me that will forever change my life. I was just short of my 37th Birthday, we had not long returned from a brilliant family holiday in America for my father’s 60th Birthday, when I was admitted to hospital due to serious abdominal pains.

I was diagnosed with Kidney Cancer, a cancer I had never heard of, at this point my wife was 14 weeks pregnant and we had a two-year-old so. I was advised the tumour was 8.5cm and had probably been in me for around 10 years. It came as more of a shock than an opposing team missing a penalty against us would be. I was absolutely devastated and feared for my wife and the future.

I came out of hospital with a plan to have my Kidney surgically removed within a few weeks on a Friday. I had tickets for Everton Away the day after with my Dad. I asked him if he would mind not going as I just couldn’t face a load of ale and probably more misery. To be honest I just didn’t want to go. For the first time in my life, I didn’t care one jot about 11 blokes running around a football field.

We took my son to CBeebies Land instead (Everton away would have been cheaper). The weather wasn’t great if I remember so we came away mid-afternoon, automatically though we switched on the car radio, just as we did Phil Bardsley pulled Ashley Williams shirt in the box, Leighton Baines penalty hit the post, hit Shay Given on the head and went in. Just about summed everything up for me and we turned the radio off for the rest of the journey.

I went to the next game, home to Spurs to try and get some normality back and we had some new signings to watch, Mainly Wilfred Bony (Oh the benefit of hindsight). We got spanked 4-0 and to say I was falling into a state of depression is a slight understatement. I had decided not to do away games for a while and has it happened, my operation fell the day before our next away game, I had my operation on a Saturday afternoon. As I woke up on the ward, by wife and parents had come to visit, the first thing I saw was my dad holding a stoke shirt up over me, with the words “best wishes, Ryan Shawcross.” That meant a lot to me and restored some of my faith in Football. On the Sunday we were away at Crystal Palace and I had decided to cheer myself up by listening to it on the radio in my hospital bed. I should have learnt really shouldn’t i? We went down 4-1 and were firmly rooted to the bottom of the table.

I couldn’t go for a while and to be honest, I didn’t miss it. However then came Man Utd away and no matter how bad things are, Man Utd away on TV gets your interest. I was fighting to get back to health and for the first time in ages I saw a Stoke team fighting with everything they had and thanks to a brilliant Lee Grant performance we snatched a late equaliser through Joe Allen.

Being fit for the next game suddenly spurred me on, it’s amazing how your teams result can lift you from the depths of despair, or quickly drop you into the same depths.

I made the next game at Home to Sunderland and my love for football quickly regained focus as my life got back on track.

On 15th January 2018, Stoke appointed Paul Lambert as our new Manager, to say I was unimpressed would be an understatement. However, within a couple of hours of this news I was recalled to the hospital following a routine check-up scan and I was told my Kidney Cancer had returned and was now in my stomach Lymph nodes. Suddenly Football & Paul Lambert was right back into a distant part of my mind. I was informed there was no Government funded cure for secondary Kidney Cancer and if the life extending drugs didn’t work, I was maybe looking at around 4 years to live.

The next match saw Lambert sat in the stands as we surrendered at Old Trafford and I was as low as we could go. I had been told I could only have a few years to live, but I think I was more depressed with the fact my football team were on their way out of the premier league.

I went to the next match, Lamberts first at home to Huddersfield, and came away feeling pumped up and thought just maybe all isn’t lost as we beat a really poor side 2-0.

Suddenly I had an interest, something to take my mind off things so I talked my mate into joining me to our next away game at Bournemouth, Badou Ndiaye’s first game, it was just what I needed, I drove there and we chatted all the way there about football away days in years gone by. Stoke played ok and went 1-0 up (Shaqiri header if I remember right), then in true Stoke style we fell apart and lost 2-1. The journey home was not so much just what I needed.

The next game was Brighton at Home, the chance to get back to winning ways, but oh no the “Charlie Adam Penalty fiasco” in the last minute meant a 1-1 draw. I was getting nothing back from football, just more and more misery.

I continued going, without my heart being in it really as it was routine and it was a distraction from what was really going on.

I was accepted onto a treatment at the Christie, funded by their charity, it was rough, and I was advised just how rough. I was even given the opportunity of not having it as it can be that toxic. I was told however there was a 24% chance of long-term remission. It was a no brainer I was rolling my sleeves up and doing it. I owed it to my wife and children.

I was to be in hospital for 5 days of intense treatment, home for a week or so and back in for 5 days, then 8-week rest. During my first 5 days, I often drifted in and out of awareness of what was actually going on around me during the treatment, but I do remember looking occasionally at my phone as we lost again at home to spurs.

I watched us concede a last-minute equaliser at West Ham on TV and managed to make the 1-1 home draw to Burnley. Again, I was watching but my heart wasn’t really there. I was trying to pre-occupy myself. Obviously, the Palace Home game was confirmation we were down.

My treatment carried on throughout the summer and the world cup was ongoing. I had lost all interest in actively being over interested in England games under Sven and Capello, but this gave me something to occupy myself and we all know how close England came. After the capitulation from Stoke, it gave me a lift and reminded me football can be good for you and not just misery.

Before the start of our first championship season in 10 years I was given the news that the treatment had worked. It really was tough and at times I almost gave up, but for now it was over, scans every three months for the next three years in Manchester is much more bearable than the alternative. I was back at the football for our first home game, I took my eldest son for the first time at the age of 4 and he fell asleep, I would normally have gone to the first game at Leeds, but after the last few years I know how up and down football can be and I refused to spend nearly £50 on a ticket and chose to watch on TV and spend the time with my family.

Now having watched us put in what has to be our worst performance for many years (seem to keep saying that) at Wigan a couple of nights ago, I am looking forward to the Barnsley game with dread.

Over the years football has meant everything to me. I have missed many important things to watch Stoke play, Wednesday night away at Halifax in the Autoglass Trophy (we’ve won it two times you know), Friday night at Brighton at the Withdean and many, many other horrific journeys.

What does football mean to me now? Well its not as high on the priority list, but would I rather do anything else on a Saturday afternoon, absolutely not. My eldest has a season ticket and is absolutely besotted with SCFC, he eats, sleeps and drinks football. Football means more to me now than 90 minutes on the pitch, it’s the day out, it’s the time spent with my Son (youngest about 18 months away from coming, my dad, my brother and mates.

No matter what happens in life, football will still be there when you get over it, it will still play a big part in our lives, but maybe not quite as much. Will I be at the first game back after the pandemic. Absolutely!

Up the Potters. Delilah forever!

This article was published in Duck, the Stoke City Fanzine in July 2020.

 

Following diagnosis in 2003 with no symptoms and, as is often the case, when being checked for a different issue, a full left kidney removal carried out. Tumour approximately 7 cm. Monitored at Urology and scanned regularly until approximately three years later when spread to chest was discovered – transferred from Urology to Oncology care.

 

SPREAD TO CHEST

Advised numerous spots on chest had developed and indication that this was inoperable and incurable, thus the condition would be treated on ongoing basis. At this point pazobanib had just been approved and commenced on this oral medication.  Continued for a number of years with few side effects apart from some tenderness to soles of feet and palms of hands. Very occasionally incidents of coughing up blood within sputum.

SPREAD TO BRAIN

Seven years after diagnosis experienced a regular tremor in left leg. Ignored, assuming perhaps a nerve pressing issue. Experienced difficulty in walking and attended physiotherapy and awaited a Neurology outpatient appointment. On reflection have often wondered why referral to Neurology for brain scan, whose waiting time was lengthy.

Recall physiotherapist mentioning he “wanted to be sure nothing was going on up there”. I did not realise he was referring to the brain and looking back he was the only one whose thinking went in this direction.

There followed an incident of falling out of bed and numbness in left leg resulting in hospital admission. Brain scan carried out and brain tumour identified.

The Palliative Care Consultant visited me in the ward and discharge followed on the Wednesday. On the Friday phone call received advising me to report to the Neurology Unit at the Southern General in Glasgow on the Monday, and could I please pick up my hospital record from Glasgow Royal Infirmary (from where I had been discharged) on my way!

A MDTM (Multi Disciplinary Team Meeting) had decided I was a suitable candidate for removal of tumour and this was carried out with discharge to a rehabilitation ward a few days later. Initially I had no ability to walk and little use of left arm. Arm improved quickly but not so walking.

A long period of rehab/physiotherapy followed and discharge using a walking stick. Physio continued at home. At follow up appointment when I mentioned my poor mobility the Neurologist indicated “you would be a much more ill person if the tumour had not been removed”. The tumour came from the kidney, i.e. was not a new primary.

FURTHER BRAIN INCIDENT

Approximately three years later my scan showed a new brain lesion, brain scans having been clear until this time. The treatment for this was scary. A number of special scans carried out and measurements of the head taken. A plaster type caste of the head was made which was used to pinpoint the lesion when radiotherapy was carried out. This was painless and only two treatments necessary. The brain scans to this day have now remained clear.

SPREAD TO BONE – FEMUR

Walking continued to be difficult. The left leg was very heavy, given to spasms and dragged when walking. I sensed further deterioration and now using two sticks to walk, mentioned my concerns to Oncology. An immediate x-ray showed a tumour on the femur bone.

Hospital admission when Orthopaedic Surgeon carried out treatment by inserting a metal rod into the femur to avoid fracture and repositioning of hip area. Oncology medication required to be discontinued during this period. Intensive period of rehabilitation and physiotherapy followed. Unfortunately, almost four months in hospital due to discharges but two subsequent falls which required further surgery.

MEDICATION TREATMENTS

  • Pazobanib, as mentioned earlier.
  • Nivolumab infusions for 18 months until a horrendous rash occurred and discontinuation required.
  • Cabozantinib for almost two years to date with little side effects apart from some tenderness in feet and some constipation.
  • Following the brain tumour, prescribed Tegretol to eliminate fitting and Omeprazole as the former can cause stomach issues. Continue with these to date along with an anti- hypertensive medication.

 

May 2020 marks entry into my 18th year since diagnosis. I am hugely grateful for the Oncology, Neurology and Orthopaedic care received which has been outstanding. Throughout this time, apart from when an inpatient, I have kept extremely well. Mobility continues to be severely restricted but manageable and life is good. Fortunately I am not a worrier by nature and feel worrying does not change outcomes. Continued working full time throughout retiring aged 67, three years ago. Currently the disease is stable and hopefully will remain so.

My name is Steve and I am currently 40 years old. I have an amazing wife, Clare, and two wonderful sons, Ernie 6 and Stanley 3.

In August 2016, with Clare 14 weeks pregnant with Stanley, I was admitted to hospital with severe stomach pains. I had been back and forth to the doctors and hospital for various tests since June.

I was admitted by a fantastic doctor who said I had been through enough tests, so it was time to admit me and get to the bottom of the situation.

I had a CT scan, and the following morning a consultant and a number of others entered my hospital room. I was told I had an 8.5 cm tumour in my right kidney. I was told it had probably been there for about 10 years. I was also told that they would do another all over body scan later that day to make sure the cancer hadn’t spread anywhere else.

I was stunned; I had never even heard of kidney cancer and I certainly didn’t think cancer would happen to me at the age of 36.

The following day, I had the results of my second scan and was told by a different consultant that there were two very small nodules on my lungs. They could not say whether these nodules were spread of the kidney cancer or whether they were incidental. They also told me they were almost certain the cancer was renal cell carcinoma. I was advised that what they had found was not connected to the symptoms I was admitted with.

I was booked in for a nephrectomy at my local hospital, after which I would be scanned again and if the lung nodules had changed size I would be referred to The Christie Hospital in Manchester to see Professor Hawkins.

I had my nephrectomy on Saturday 17th September 2016, 3 weeks after diagnosis. Mr Bromage, my surgeon, was fantastic and despite a very small issue of my kidney being stuck to my bowel, the operation was a success. I was in hospital for two nights and was sent home at lunch time on Monday, which happened to my 37th birthday.

The first few days were tough but as time went on, I grew stronger and listened to my body and only did things as I felt comfortable to do so. Unfortunately, after two weeks a district nurse came to take out my staples and she couldn’t take them all out as she felt there was an infection. I had felt a little unwell a few days before and a doctor told me I had gastroenteritis. What the district nurse had suggested was correct and I was admitted to my local hospital for antibiotics administered via a drip. I was in hospital for a couple of days.

After returning home a district nurse came to take out the remaining staples and I slowly started to re-build my strength. I was back driving 4 weeks after the operation and back at work after 6, albeit on a fazed return for a week.

At my 6-week follow up, I was advised by Mr Bromage that it was confirmed I had renal cell carcinoma and it was a stage 3 cancer.

Through all of this I received fantastic support from my family and friends and a Macmillan counsellor. I did not know anybody else who had kidney cancer.

I was scanned every 6 months following this and was told on each occasion that there was no sign of spread and the lung nodules were stable and likely benign.

I was due an appointment in December 2017 for my scan results but received a letter the week before cancelling due to staff shortages. I chased the urology department and was given an appointment for the end of January 2018.

On Monday 15th January I was driving past my local hospital and I received a call from them at 13:00. I was told I needed to come in at 16:00 that day. There was no more information to give me at that time.

I attended the appointment with Clare, my wife, and Mr Bromage. He informed me that the cancer had spread to the lymph nodes in my stomach. I was told it was incurable and I was being referred to Prof Hawkins at The Christie Hospital in Manchester. I was told I was likely to be put on TKIs but Prof is trialling immunotherapy treatments. I was told I could have around 4 years to live.

We were absolutely devastated and left and told our family. There was no operation this time and no visible way out.

I then found Kidney Cancer Support Network on a Google search and set up a call with Rose. She told me about Prof’s immunotherapy treatment called high-dose (HD) interleukin-2 (IL-2). It was the only possible treatment that could lead to remission. She did advise it was an extremely tough treatment and you had to meet certain criteria to be considered for it.

When I met Prof and his team I was told I was eligible for treatment, subject to a heart stress test which I had at Wythenshaw Hospital.

Interleukin-2 is only available at The Christie and is funded by the Christie Charity. It is a hospital inpatient treatment and is certainly not for the faint hearted. One of Prof’s team even told me that I didn’t have to go through with the treatment, and that other patients had opted for life-lengthening drugs rather than IL-2.

That was never an option for me as I had two children to be there for. The doctors gave me all the medical information but just as valuable, if not more so, was the information I got from KCSN members, especially those who had already gone through IL-2 with different outcomes.

I had 33 doses of IL-2 over 4 hospital admissions, and to say I hit the bottom at times was an understatement, but you do recover from the extreme symptoms pretty quickly and I am certainly glad I took it on.

The treatment was successful for me and I will be forever grateful to both The Christie Hospital and KCSN. Both were invaluable to me and KCSN has continued to play an important part in my recovery and life going forward. I have been in remission since September 2018 and am scanned every 3 months.

I became an administrator for KCSN’s Facebook page in January 2019 and have more recently joined the charity on a more formal basis. I have carried out fundraising events and I plan to continue to be involved with KCSN for the foreseeable future, alongside the new career I am training for in person centred counselling.

In March 2013 my life was fun and fast paced. Running a fashion design business from home meant never a dull moment for me or my family. My husband Johnny and I had just celebrated 25 years of marriage in London and I was back creating a new collection when I had a rude awakening.

Waking one morning I felt unwell then discovered I couldn’t wee. Soon after, I collapsed in agonising pain. Not realising how serious things were, I refused to call an ambulance. Johnny carried me to the car and took me to our local hospital who shrugged, then called an ambulance. The second hospital sent me through the CT scan then called for another ambulance. I was taken via blue light to a renal ward in a larger hospital and left for several hours completely unaware what was happening.

Later that evening it transpired they’d ‘forgotten to admit me’. I was still unaware that a large tumour had ruptured in my left kidney causing a blockage; hence no wee. The pain was excruciating. My nurse saviour on the night shift sorted this out and introduced me to a three-way catheter and drain. The next day I was visited by a Registrar on the ward round. Whilst on my own he delivered the news, “We need to remove the cancer in your kidney”.

What a shock! I’d worked out something bad was causing the pain and bleeding, however; this wasn’t how they broke news of the C word on Holby City. I was fast learning that real life and TV drama are not alike.

I don’t want to dwell on my hospital experience as it wasn’t good. It actually got worse! Thankfully, I had a notebook and wrote everything down. Much to the annoyance of the medical staff (who thought I was some kind of mystery shopper type of patient) I made notes from day one. My elderly neighbours on the ward loved it, they’d pipe up during ward rounds, “Put that in the book!”

My tumour was embolised then removed. Following surgery I spoke to my GP; who has been incredibly supportive, and he requested a change of hospital. This in itself caused problems. Surgery notes were ‘lost’ and a scan missed. When I eventually saw my new consultant she was charming but to my surprise, discharged me. I was eleven months post surgery. Quite unprecedented.

I spent three years in cancer limbo where my GP took on my care, sending me for scans etc. He prescribed gabapentin as I had continued pain around the surgery area, which I took reluctantly. I’ve never liked taking medication. Ongoing back and abdomen pain led eventually to another referral to a third hospital. It was discovered that I had some nerve damage and I was sent for physio.

The physio helped and begged the question, “Why aren’t patients given physio following major surgery?” I had developed a lopsided gait over the years after my nephrectomy which could have been avoided (along with the pain) had I been given advice about exercise post op.

The physio recommended yoga so I found a good local studio and was soon a regular. My new fitness regime included running and cycling. I decided to push the running further, trying some races where I could get sponsorship and raise funds for kidney cancer. I’d been in an athletics club when younger so it was wonderful to get back into running kit and see what I could achieve.

Another first love; writing had also been rekindled post cancer. The note book I’d kept in hospital was transferred to a blog which gathered momentum and followers. So much so, I was asked to put my journal into book format. For help with this I joined a writing group and before long was churning out short stories, poetry and articles; writing was becoming another release from which I was benefiting greatly. My book An Unfashionable Cancer is currently being edited.

Over the following years I weaned myself off the gabapentin, focusing on my fitness. I ran some races and donated the fundraising to kidney cancer charity. Starting with a 10K, working up to a half marathon and then in 2018 the big one. To celebrate my five year cancer free goal I ran a marathon. I’d reached that virtual finish line and crossed it in my running kit.

One of the things I’m most proud of is a design I’ve worked on. Fashion appeared superficial following cancer. I was modelling a lot of hospital gowns and realised how, as a patient, we lose identity as well as dignity during treatment. Therefore, I created a gown that eliminated fiddly ties and fastenings and covered patient’s modesty. I’ve called this the Coverstory Gown. This is currently being looked at by an NHS trust with a view to procurement. I’m also selling them to individuals in personalised prints and slogans.

The word I like most that’s been used to describe my kidney cancer experience is stoic. I’d like to think I just got on with things, or at least appeared to. However, as most of you know, the inner struggle can’t always be seen. I do attribute cancer with some positives though. I’m not sure I’d have laced up my running shoes again and probably wouldn’t have returned to writing. As for Coverstory, I think we all have one of those which is why I chose it as a business name. I’ve combined designing with writing and ask patients to share their stories, we are none of us faceless patients on a ward and sharing our stories helps us unburden some of the anxiety cancer has added.  If you’ve experienced a malfunctioning gown or have found an alternative way to ‘close the gap’ please get in touch via www.coverstoryclothing.com

Sometimes, only we can write that happy ending, I’m constantly working on mine.

 

 

 

 

 

 

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.

 

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