My name is Katy and I am 34 years old. I have a two year old little boy and a loving husband. My kidney cancer journey started in 2016 when I was referred to the hospital with suspected appendicitis following a pain in my side.

At the time I underwent scans and was diagnosed with an angiolipoma which I was told is a benign lump made up of blood vessels on the kidney. I had yearly scans to monitor for growth and carried on with life as if nothing were wrong. When I fell pregnant in 2019 my ‘lump’ grew, to the point I was told I needed a caesarean in case of rupture during childbirth.

Following the successful delivery of my baby boy I was referred for a CT scan in July 2020 to check the exact make up. It was at this time I was told I did not have an angiolipoma, but in fact it was cancer. In that split second of being sat in front of a doctor and specialist nurse, with my sister, my world came to a standstill. The next 3 weeks were an emotional blur.

I was lucky to be in for an open partial nephrectomy the following month. No one can ever prepare you in life for the ‘C’ word. You see programmes, fundraisers and stories on TV and social media and your heart goes out to the people who have are fighting this dreaded disease, but a bit of you never thinks that one day you will also be part of the biggest fight of your life.

The first 3 months of my diagnosis and operation were particularly tough, and I could not have got through it without the support of Rose and the KCSN support group. Chatting to people who know exactly how you are feeling both emotionally and physically, and having that support is exactly what you need to get through.

When it came to the pathology of my cancer, I was told that I have an extremely rare subtype called MiT family translocational renal cell carcinoma. This type of cancer is so rare that it cannot be graded so because of this they cannot tell me the likelihood of it recurring. I will need CT scans every 6 months to check for this. I am now nearly a year on from surgery and my second monitoring scan is looming. Although the nerves are starting to kick in, I know that I have the support and guidance form the amazing KCSN to help me through.

The hardest part for me on this journey is the impact it has on your mental health, and your ability to do simple tasks without letting the negative thoughts take over. I am still only relatively new to this, so I am hoping in time I develop coping strategies. But for now, I will continue to stay as positive as I can, enjoy life with my amazing little family, and carry on the fight that all cancer warriors are part of.

My name is Scott and I am 53 years old. I have advanced metastatic stage 4 clear cell renal cell carcinoma (ccRCC). I had a radical nephrectomy in July 2019. I have numerous metastases in my lungs and I am undergoing treatment. I failed combination immunotherapy (ipi/nivo), and I am now taking targeted therapy (cabozantinib).

About Me: I retired young at 46 following 25+ years as an international consultant in radars and Air Traffic Control. I lived out a suitcase, literally working and teaching around the world wherever the contracts were. Now aged 53, I’m 18 months into an incurable (so they say) kidney cancer diagnosis (RCC). I married my wonderfully understanding and truly amazing wife Julie in 2016 and we live in Camberley with our nutty Springer Spaniel called Zara! I speak English, French and Glasgow slang fluently but can also ‘get by’ in most major European languages (Italian, Dutch/Flemish, German, Spanish and a smattering of Gaelic).

I consider myself a normal bloke, trying but struggling at times to live a normal life with cancer. I love football and have followed the Scotland national team home and away since the 1980s – and have attended 122 away games! I have followed my local club football sides wherever I have lived for extended periods, a few of which include Glasgow, Worcester, Brussels, Paris, Sofia, Kuwait City and my base for more than 20 years has been Camberley in Surrey where I held many a season ticket at Aldershot Town over those years – even when working on foreign postings.

My lifelong passion is travelling and have visited 128 countries in my life (lived for extended periods in 7). My wanderlust satisfied, I no longer crave to throw my rucksack over my shoulder and take off somewhere new! I’m glad I invested time and money travelling when younger rather than older! I most enjoy visiting countries with a poor perceived ‘reputation’ according to our press. These are always great fun – they are generally safe and not like their dodgy stereotype!

I have written a poem about my cancer journey (I hate when people describe it as “your journey”). That is at the end of this profile. It can be read in parallel with this.

About My Cancer: I first noticed cancer related symptoms around September 2018, visited my GP several times and got little action (come back in 8 weeks if not improved). Nine months later, in June 2019, the symptoms became unbearable and my GP finally sent me for a battery of ‘urgent’ tests. Surprise, surprise, they found an enormous 14cm diameter tumour that “used to be” my right kidney. I was on the slab within 4 weeks for a radical nephrectomy to remove my right kidney (1.42kg which is amazing when you consider normal kidney is 150g).

Have never recovered properly from the surgery and 18 months on, still take morphine twice daily due to extensive nerve damage from “open” surgical procedure (did you call me a junkie?).

My post-op histology identified RCC (clear cell) with metastases throughout my lungs and lymph glands. July – November 2019 was recovery only with no cancer treatment. Then started a 4 x infusion course of immunotherapy (ipilimumab/nivolumab combination). Works for so many but my body rejected it and I was hospitalised just before infusion 2 and again just after infusion 4 (should have stopped it after initial problem! Hindsight, eh?). Second hospitalisation was 12 days and it nearly killed me! The cancer grew rapidly in size and number of nodes under immunotherapy treatment.

I started a targeted therapy (TKI) early March 2020 called cabozantinib (medium 40mg/day tablet). Experienced many known complications and side effects. My body cannot cope with cabozantinib without regular breaks but learned how to control most side effects.

Painful and ulcerous tongue/mouth, hands and skin can be controlled (see the KCSN patient notes) but worst is the effect of cabozantinib on my feet!!! Skin comes off in sheets and I take monthly breaks for at least a week to recover. Another side effect is raised blood pressure and I had to start a BP reducing drug as well for this side effect.

My poor state of health following failed immunotherapy revealed that my endocrine (hormone) system was permanently ruined and for life I will need daily doses of some hormones as my body will never naturally produce them again: Hydrocortisone (steroid), levothyroxine (thyroid) and testosterone (male hormone). It’s been a struggle to get that balance right as well but we got there over some months and bloods tests. The dosage levels needed to be tweaked and adjusted over time! Synthetic hormones and steroids often incur unavoidable weight gain. I went from 77kg to 95kg in a matter of 6 months.

It’s a steep learning curve balancing cancer and endocrine drugs. My specialist cancer nurse plus some online forums and a contact at the Maggie’s Centres have all been a massive source of useful support. The team at KCSN know the subject so well and have been great too. I offer humble thanks to all! I have tried a few complementary therapies but find I am not a “holistic” or meditative type of person. However, body, head and feet (reflexology) massages are great to relax.

In 2 years, my lifestyle changed enormously. I have a blue badge and disabled status and when cabozantinib levels are at maximum, I really appreciate it. Walking 250m is OK but walking a mile or two with feet and toes rubbing leaves my feet painful and raw for days.

Having been through a radical operation, immunotherapy and currently targeted therapy, my further options are reducing. When I started cabozantinib I had sporadic breathing issues but my first 3-monthly CT scan revealed some shrinkage of cancer nodes in my lungs. One lung metastasis went from 2.3cm to 1.5cm. I was so thrilled and subsequent scans have been ‘stable’.

If you are in a similar boat to me, nudge your oncologist to request a bone scan – for peace of mind! I had my first ever bone scan after 16 months post-op! It was clear, thankfully, but I had been worried about possible bone mets so this was reassuring!

The worst things so far were probably my two hospitalisations under immunotherapy. Having rigors is NO FUN! Also scary are the feet – skin coming away in sheets is hard to imagine until it happens! Top tip: Your “chemo corns” will keep coming back time and again. Ask your GP or oncologist to refer you to podiatry and get your feet tidied up 4-6 weekly!

Good luck, I hope these notes are useful. If you want to ask any questions, I am always happy to share my experience – contact me through the KCSN.

I started writing poems in October, on “World Random Acts of Poetry Day” and this is the 5th one I have written now!

A POEM ABOUT CANCER

By Scott, written on 18-19 December 2020

I’ve been quite a while, not feeling great
Now I notice, I’ve lost some weight
It’s been some months so I’ll ask my GP
I get the usual response… “Let’s wait and see!”
Little do I know what’s growing inside of me!

3 months later when it’s getting worse
My bloods are taken by the nurse
The GP sighs and his fingers bend
He says he’s going to phone a friend
With the symptoms driving me round the bend

It’s now got much worse throughout the winter
Now it’s June and I’m thin, like a splinter
Still losing weight and sweats at night
No longer funny, this is a plight
This can’t go on… There’s something wrong

Once more I go to see “The Doc”
There’s no more running down the clock
To hospital, I’m pricked and poked
I’m scanned and tested, this ain’t no joke
And I’m no longer just a “normal bloke”

The medical machine starts to turn at last…
It’s cancer son, WE MUST ACT FAST!
Your tumour’s massive, How can this be?
I said “You’ve had plenty chances to see”

… that big old beast growing inside of me

The cancer surgeon sits me down
And places on that oft-used frown
You need an operation AND in a hurry
We’re good at this, you don’t need to worry
We’ll just snip your kidney out – we are so sorry

It’s a Brucie Bonus and what can you say?

It’s Incurable and its here to stay!

My “journey” beginning, or is it my end?

Everyone involved driving me round the bend!

Not terminal but incurable is the term today

Four weeks later I’m on the table
My infected organ is no longer able
At three pounds weight, it is a whopper
The surgeon got it with his chopper
My life is changed – so what have I left to offer?

Recovery is slow but steady
A full 3 months until I’m ready
A “re-stitching” error has left lots of pain
That’s me still suffering… yet again
But morphine daily ONLY JUST keeps me sane

It’s in your lungs but that’s alright
It’s not your time to say goodnight
Our new wonder drugs will keep you steady
It’s not a cure but please be ready…
… for “a high quality of “life with cancer” – said he!!

Immunotherapy is the drugs name
Some people can be cured… it’s gaining fame!
But for some others who grasp and grope

It extinguishes a bit more hope
And send you towards a downward slope

In hospital, not once but TWICE
These side effects are not very nice
My hormone system remains in tatters
It feels like life has left me battered
Please leave me and my body some time to mend

Next up we’ll try che-mo-thera-py
Brings new hope, not this painful lethargy
The side effects are hard to take
My body just needs to have a break
And I’m just fed up of all the heartache

I just cant decide, what IS the worst?

The chemo drugs or this cancer curse?

My feet are crippled and my body suffers

Each morning I wonder whats next for this old duffer!!

It must be time for a chemo ‘holiday’

That’s 9 months now with problems many
But for cancer growth there is hardly any
There a is fragile balance in my life
I’ll repay that love to my dear, dear wife
And I’ll make amends to her for all this strife

The alternatives that remain are few
We all live in hope for something new
It’s not an option for more of the knife
It might be lasers that could save my life
I’ll find a way to stay alive!!!!!

 

In Feb 2008 whilst fooling about with the other half, I felt a sharp pain on the right side of my abdomen between my rib and hip. On further investigation I felt a lump shaped like the top of an egg. A couple of days later, encouraged by my husband, I visited my GP who examined me and agreed the lump was out of the ordinary and ordered a blood test and ultrasound.  I was told my bloods were fine, but I had a 9cm growth on my right kidney. Seven days later I was seen by the most arrogant urologist ever, who greeted me with the words “Well one thing I can tell you, it’s not cancer” I said “How can you be sure?” To which he replied, “Your blood and urine are clear and with a growth that size you’d be flat on your back very ill, not sitting there smiling at me!” After a cursory examination, to be sure, he ordered a CT scan and biopsy. After 10 days I chased for the CT and biopsy date because I knew the tumour was getting bigger.

April 2008, I went to the return appointment. The urologist said to me “Definitely not cancer, it’s neurofibromatosis (Thank goodness I made him write this down) it’s taken 10 years to grow; not on your kidney but attached to your spine.” I told him “No, this has grown since I last saw you, I can’t close my legs and I feel as though I’m pregnant.  Please examine me.” He said, “No it’s just your imagination, you’ll get another appointment to sort it out.”

I left and went home to think. This was my local hospital in Essex.

4am next morning I woke up and started researching on the internet. I found a specialist in Manchester for neurofibromatosis. At 9am, I rang the specialist’s secretary who gave me the name of a clinician at Guy’s Hospital in London which was nearer. I called Guy’s Hospital and explained my dilemma to the secretary who said the consultant would see me as urgent with a referral. I called my local urologist’s secretary to be told he was going on holiday next day (‘pleased’ does not cover my relief at not having to talk to him!). At 11am that same morning I made an appointment to see my GP who I have known for years and who had delivered my children. I told him that “6 weeks ago you examined this lump, would you mind doing so again please.”  He agreed it was definitely bigger, and he could feel it across the whole of my stomach. I related what had happened at the previous day’s appointment, that I had done my research and that I needed a referral. He initially declined as it would have to go through the urologist, (he too looked happy when I told him the urologist was on holiday).  The referral was faxed through to the professor at Guy’s Hospital within 2 hours!

One week later I was examined by the consultant at Guy’s and sent for an immediate CT scan. She phoned in person the next day to say it was definitely NOT neurofibromatosis and she would like me to see their urologist, he had seen my scan. One week later, the Guy’s consultant sat me down with the words “IT DEFINITELY IS KIDNEY CANCER”. I was booked in for a full radical nephrectomy in 2 weeks, there was no way I was going to go back to my original hospital in Essex. The tumour and kidney were removed 4 weeks later 15th May. The tumour was a stage T2 Nx Mx, Furman grade 3 or 4 and it was 19cm big. They also had to take away a small part of the bowel wall where the tumour had become attached. At the beginning of June and follow up scans, I was told I was clear and asked to take part in the SORCE clinical trial. This is a trial called an adjuvant trial and it was looking to see whether taking drugs earlier could stop kidney cancer spreading to anywhere else in my body.

Alongside all this, my father was told he had terminal mesothelioma with a prognosis of six to eighteen months max. It was a day of highs and lows. Luckily, because of my own research about kidney cancer, I knew about NICE and so researched his treatment before seeing the oncologist with him. I was able to make sure that dad got the best possible treatment. I never told my dad I had cancer, he had his own fight to fight, having lost Mum to breast cancer when I was 12, I just couldn’t tell him.

Even though SORCE was a double-blind trial, it was quickly obvious I was taking the active drug called sorafenib. I persevered; my hair stopped growing and thinned until I had to wear a wig, my feet and hands were unbearably painful, I could hardly walk or even hold a spoon. I took treatment breaks but eventually had to leave the trial. I returned to work but could not sustain the role, which required lots of activity including moving and lifting tables and chairs. In addition, I was taking on more caring for dad, taking him to hospital appointments, taking him to chemo, radiotherapy, sorting his drugs etc.

I resigned my job, but as a fully qualified driving instructor I took on more pupils and fitted my appointments around dad’s needs and my own appointments at Guy’s Hospital. I was still clear of kidney cancer and in April 2009, we took dad on a Baltic cruise. Dad had always wanted to see St Petersburg and although he was in a wheelchair, the trip gave us such wonderful memories and I was still clear when dad lost his fight on my birthday in March 2010.

In August 2009, my husband and I had brought a small Winnebago. 2008 had been our wakeup call. We started saving and in August 2011 we brought a 35-foot 11-ton Winnebago, took our lorry licences and I took my artic licence so we could have a car and trailer. On 23rd Jan 2012 we moved out of our home and into our bus, rented out our house and started our travels.

In May 2013 we set off for Scotland, we got as far as Lincoln before I was recalled to Guy’s Hospital. The kidney cancer was back and had metastasised to my lungs.

Post sorafenib, watch and wait was prescribed with a prognosis of six months to six years, no one knew. In August 2013, I was there to see my daughter graduate from University and in October still in our big Winnebago bus, we left to spend the winter in Spain, our first time. I flew home from Spain in November, January and March for routine appointments at Guy’s Hospital and within two days of our arrival back in the UK in April 14, I started on pazopanib. Pazopanib was effective for me and two shrinkages followed, and I have been stable ever since.

In 2015, my son and partner gave me my first granddaughter, and in June 2018, a grandson. In 2016, I walked my daughter down the aisle to be married.

My husband and I are now residents of Spain. I transferred my care from Guy’s in London to St Lucia Hospital in Cartagena, a Spanish centre for cancer treatment, in October 2019.  My urology consultant speaks excellent English and I continue to take pazopanib which is still holding my kidney cancer stable. It was so sad to say goodbye to the team at Guy’s Hospital who have been so supportive of my travels over the years but they have left the option open for me to return to Guy’s if things don’t work out.

We reluctantly sold the Winnebago in 2016 and purchased an American 5th wheel. In 2019 that too was sold, and we have moved into a park home on the same camp site but we own the small pitch outright giving us a small but secure base. We have a Hymer motorhome which we live in for the four(ish) months which we spend travelling during the summer. Our UK house was sold in 2018/19.

Life is generally good. Would we have done this without my diagnosis? I don’t know, I just know I love my life!! 💝

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.

Note: Debbie Murphy has completed her inspiring book about life following her diagnosis of kidney cancer. The book has had fantastic reviews and KCSN recommend it to all kidney cancer patients and families. Debbie is kindly sharing the proceeds of her book sales with our charity.

You can order Debbie’s book through Amazon: An Unfashionable Cancer

 

 

 

 

 

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

  TOP