It’s always easy with hindsight!
Pete’s cancer journey I think probably began in the summer of 2017. I remember it was quite hot. He seemed to sweat a lot, not a little bit but the kind of wet faced sweating that made him look like he had run a marathon. He likes to cook and whenever we commented he just shrugged it off with “I’ve been slaving over a hot stove” and so we parked it. He also visited the GP several times with hay fever or a nasal infection, some kind of drip that resulted in a couple of courses of antibiotics, and then the summer was over, the sweating seemed to stop or maybe I just didn’t notice. He did though have a little cough – not persistent or bad, just the kind of thing that is irritating and noticeable.
Still nothing to report until summer 2018 – early summer. The hay fever seemed to return with a vengeance. Several trips to the GP. Various nasal sprays, more antibiotics and the “drip” was turning into an onslaught, that made him gag and on the odd occasion throw up.
My husband is a fairly big bloke. Not massive at that point but definately in the overweight department. It was our daughter’s PGCE graduation from Cambridge that summer and for reasons I won’t bore you with, we had two ceremonies a couple of weeks apart. At the first, his navy suit was already looking a bit big. I didn’t really notice but he now says, he did. By the second ceremony it was bigger and when we went out for lunch with friends afterwards, he threw up several times between courses, blaming it on the “snot rush”. I sent him back to the GP. More antibiotics, another nose spray.
Our grownup kids took him to see The Book of Mormon – I didn’t fancy it – and with hindsight they both say now, they knew he wasn’t well.
The day before we went on holiday with friends to The Dominican Republic, we had a family wedding. Said suit, was now drowning him. The man with a massive appetite ate next to nothing – the food wasn’t that great, but it was still odd!
By now both kids were getting worried but Pete wasn’t having any of it. He said he was trying to lose weight, sweating at night because it was hot and just a bit fed up with the nose thing. But on that holiday, everything changed.
Pete has always treated holidays as an eating fest – big breakfasts, lovely lunches and plenty to eat for dinner and suddenly we were struggling to get him to eat a scrambled egg. He was losing weight in front of my eyes – his chunky legs sticking like sticks, out of his trunks. He threw up when he went sailing with our son, when he ate, when he didn’t eat and he coughed.
Our friend’s daughter was reading This is Going to Hurt by Adam Kay and got to the part where someone is diagnosed with cancer – if you have read it you’ll identify – and I now know, told her mother she thought Pete was dying.
The weight loss was scary- probably half a stone every three or four days.
We got off the plane and went back to the GP together. She looked him over, referred us to an ear nose and throat (ENT) specialist (we are lucky to have private health care) and said she didn’t think there was much wrong!
I made the appointment to see the ENT specialist. He saved Pete’s life! He did the usual things, blood tests, TB test and said come back in a few days. More weight lost!
He looked at the results – “well there is nothing wrong with your kidneys, but let’s do a full CT scan just in case. My secretary will call you if there is a problem”.
Then our son had his tonsils out – a complete nightmare!
An hour after we left the scan we got a call to say can we go back at 5pm for an urgent appointment.
We knew – you do!
But we did not know, where or what. Pete had no kidney cancer symptoms. No pain, no blood in the urine, nothing.
When you walk in the room and the nurse is there with a box of tissues you know it’s not good. Stage 4 kidney cancer – a mass in his right kidney, inflamed lymph nodes, spots in his lungs…I don’t remember much except the box of tissues and that the doctor had already set an appointment for an hour later with the specialist kidney surgeon. We were lucky.
On the phone to a friend who is a consultant in that hour – he said “Don’t worry – you have two kidneys!”.
The surgeon was reassuring – he said we will get the kidney out and the drugs will mop up the rest. We believed him. What else do you do?
That night our son had a haemorrhage from his tonsils – I am squeamish – Pete got up to deal with the blood fest – I didn’t know whether to laugh or cry!
Pete was 56. I messaged our friends. I stressed not to search Dr Google – things have moved on since then I said, not quite sure if I was reassuring them or me.
The following Saturday Pete was booked in to have the kidney surgery. Our son went back to Uni – dad only has a 0.1% chance of dying now he said and I believed him!
On the Wednesday it was my birthday. On Thursday it was our company 25th anniversary – I made a speech to 60 odd clients – funny what you can cope with – changed my clothes and got the train to meet Pete at the hospital for his pre op tests.
By the time Saturday came he looked awful; systematically being poisoned by the cytokines, coughing, unable to eat, having lost about 3 stone in 6 weeks.
Our daughter was with me throughout. It’s quite a long operation but Pete woke up in recovery singing! And the cough had gone. Just like that! The surgeon had removed his kidney and most of the dodgy lymph nodes but had left one attached to his artery, deciding that it was better he was alive!
The next few days were uncomfortable, but he already felt better. At home a diet of jammy dodgers and crisps started to put the weight back on. We began to breathe.
The surgeon follow up was good. He was optimistic and diagnosed simple RCC.
6 weeks later we had our first appointment with the oncologist. I’ve got to be honest, it was quite brutal. The first time we heard that the RCC had significant sarcomatoid change. We learnt about drug trials and immunotherapy and left the hospital exhausted.
I read everything – joined all the Facebook groups and Smart Patients and sought information.
Pete was sent all the information to join the ipilimumab/nivolumab clinical trial – the only way to access that drug combo at that time. We agreed and went to the pretest appointments – switching back to the NHS. Pete had a scan and we met our lovely trial nurse.
He was due to start the trial on Monday and the nurse was going to call to say which arm we were on, i.e, drugs every 3 weeks or 3 months.
It was our daughter’s birthday – we were off to see Hamilton but an hour before, he took a call from the nurse saying he couldn’t join the trial and she couldn’t explain why. A new appointment was set for Tuesday.
Pete doesn’t remember Hamilton – we have since seen it again – he thought he was going to die without the treatment! The only good thing – literally that night NICE approved the combo for use on the NHS. Phew.
On Tuesday we meet the nurse and the oncologist. Unbelievably, Pete’s cancer has gone into spontaneous remission. This is rare – look it up! His lymph nodes are all normal, most of the spots in his lungs have shrunk. No further treatment required for 3 months. We were in shock. It is difficult to explain – we didn’t know whether to laugh or cry!! We did however go and buy a watch for his 60th birthday – 4 years early!
We had two more scans like this, no change but that one lung nodule was still there and, in the summer, seemed slightly bigger. So plan B. Meet the lung surgeon and sort a lobe removal.
Lung surgery is not much fun – more challenging than the kidney removal, more recovery time required but Pete is a trooper! Anything for NED.
6 months of NED and then the same spot in the lung in the same place reappeared. Right in the middle of COVID.
This time the oncologist recommended the ipilimumab/nivolumab combo – the sarcomatoid change deemed to be an advantage – who knew!! We opted to go privately although the NHS start date was only a week later, more because privately the drugs can be stopped and restarted if required, which can sometimes be more challenging on the NHS. The list of side effects was scary but when you don’t have a choice, you just get on with it!
Pete had to go to all the scans, blood tests and infusions on his own. I drove him there and back to the first one and for all the others he drove himself, no problem. After infusion number one he was scared to go to the loo, kept looking at himself expecting something to happen but nothing did. Other than a dry mouth after number 4 – we think caused by the infusion being made with a sugar rather than a saline solution – only speculation – he had no side effects. So we thought it wasn’t working!
12-week scan and NED!! Lungs all clear.
Pete had about 27 further infusions of just nivolumab – and scans every 3 months. We had a few scares – the odd swollen lymph node caused by a virus but no cancer. At about the 12 month mark he suffered with an immunotherapy attack to his joints. He was so blasé he did at first think it was an old football injury! But when he could hardly walk he had steroid injections and has been on prednisolone and hydroxychloroquine ever since. He is back to being a big bloke – a bit steroid induced – and is about to start a new drug to try and get off the steroids but coming up to 5 years later he is still NED.
In that time he has reached his 60th birthday (there were no more presents), seen our daughter Emma, and son Matty, both graduate. Matty qualified as a lawyer and in October Pete is about to walk Emma down the aisle.
It is impossible to thank the doctors enough. Their skill has kept him alive and well and the kidney cancer groups like this have kept us sane and informed and we have met some amazing people.
We are so grateful and enjoying every minute of our life together!
There is always hope!
A footnote – the private GPs who never thought there was anything wrong, never followed up and still don’t know if he is dead or alive!! I know it is difficult to diagnose, but really….
[sayit block="1" lang="en-GB" speed="1"]It’s always easy with hindsight!
Pete’s cancer journey I think probably began in the summer of 2017. I remember it was quite hot. He seemed to sweat a lot, not a little bit but the kind of wet faced sweating that made him look like he had run a marathon. He likes to cook and whenever we commented he just shrugged it off with "I’ve been slaving over a hot stove" and so we parked it. He also visited the GP several times with hay fever or a nasal infection, some kind of drip that resulted in a couple of courses of antibiotics, and then the summer was over, the sweating seemed to stop or maybe I just didn’t notice. He did though have a little cough – not persistent or bad, just the kind of thing that is irritating and noticeable.
Still nothing to report until summer 2018 – early summer. The hay fever seemed to return with a vengeance. Several trips to the GP. Various nasal sprays, more antibiotics and the “drip” was turning into an onslaught, that made him gag and on the odd occasion throw up.
My husband is a fairly big bloke. Not massive at that point but definately in the overweight department. It was our daughter’s PGCE graduation from Cambridge that summer and for reasons I won’t bore you with, we had two ceremonies a couple of weeks apart. At the first, his navy suit was already looking a bit big. I didn’t really notice but he now says, he did. By the second ceremony it was bigger and when we went out for lunch with friends afterwards, he threw up several times between courses, blaming it on the “snot rush”. I sent him back to the GP. More antibiotics, another nose spray.
Our grownup kids took him to see The Book of Mormon – I didn’t fancy it – and with hindsight they both say now, they knew he wasn’t well.
The day before we went on holiday with friends to The Dominican Republic, we had a family wedding. Said suit, was now drowning him. The man with a massive appetite ate next to nothing – the food wasn’t that great, but it was still odd!
By now both kids were getting worried but Pete wasn’t having any of it. He said he was trying to lose weight, sweating at night because it was hot and just a bit fed up with the nose thing. But on that holiday, everything changed.
Pete has always treated holidays as an eating fest – big breakfasts, lovely lunches and plenty to eat for dinner and suddenly we were struggling to get him to eat a scrambled egg. He was losing weight in front of my eyes – his chunky legs sticking like sticks, out of his trunks. He threw up when he went sailing with our son, when he ate, when he didn’t eat and he coughed.
Our friend’s daughter was reading This is Going to Hurt by Adam Kay and got to the part where someone is diagnosed with cancer – if you have read it you’ll identify – and I now know, told her mother she thought Pete was dying.
The weight loss was scary- probably half a stone every three or four days.
We got off the plane and went back to the GP together. She looked him over, referred us to an ear nose and throat (ENT) specialist (we are lucky to have private health care) and said she didn’t think there was much wrong!
I made the appointment to see the ENT specialist. He saved Pete’s life! He did the usual things, blood tests, TB test and said come back in a few days. More weight lost!
He looked at the results – “well there is nothing wrong with your kidneys, but let’s do a full CT scan just in case. My secretary will call you if there is a problem”.
Then our son had his tonsils out – a complete nightmare!
An hour after we left the scan we got a call to say can we go back at 5pm for an urgent appointment.
We knew – you do!
But we did not know, where or what. Pete had no kidney cancer symptoms. No pain, no blood in the urine, nothing.
When you walk in the room and the nurse is there with a box of tissues you know it’s not good. Stage 4 kidney cancer – a mass in his right kidney, inflamed lymph nodes, spots in his lungs…I don’t remember much except the box of tissues and that the doctor had already set an appointment for an hour later with the specialist kidney surgeon. We were lucky.
On the phone to a friend who is a consultant in that hour - he said "Don’t worry – you have two kidneys!".
The surgeon was reassuring – he said we will get the kidney out and the drugs will mop up the rest. We believed him. What else do you do?
That night our son had a haemorrhage from his tonsils – I am squeamish – Pete got up to deal with the blood fest – I didn’t know whether to laugh or cry!
Pete was 56. I messaged our friends. I stressed not to search Dr Google – things have moved on since then I said, not quite sure if I was reassuring them or me.
The following Saturday Pete was booked in to have the kidney surgery. Our son went back to Uni – dad only has a 0.1% chance of dying now he said and I believed him!
On the Wednesday it was my birthday. On Thursday it was our company 25
th anniversary – I made a speech to 60 odd clients – funny what you can cope with – changed my clothes and got the train to meet Pete at the hospital for his pre op tests.
By the time Saturday came he looked awful; systematically being poisoned by the cytokines, coughing, unable to eat, having lost about 3 stone in 6 weeks.
Our daughter was with me throughout. It’s quite a long operation but Pete woke up in recovery singing! And the cough had gone. Just like that! The surgeon had removed his kidney and most of the dodgy lymph nodes but had left one attached to his artery, deciding that it was better he was alive!
The next few days were uncomfortable, but he already felt better. At home a diet of jammy dodgers and crisps started to put the weight back on. We began to breathe.
The surgeon follow up was good. He was optimistic and diagnosed simple RCC.
6 weeks later we had our first appointment with the oncologist. I’ve got to be honest, it was quite brutal. The first time we heard that the RCC had significant sarcomatoid change. We learnt about drug trials and immunotherapy and left the hospital exhausted.
I read everything – joined all the Facebook groups and Smart Patients and sought information.
Pete was sent all the information to join the ipilimumab/nivolumab clinical trial – the only way to access that drug combo at that time. We agreed and went to the pretest appointments – switching back to the NHS. Pete had a scan and we met our lovely trial nurse.
He was due to start the trial on Monday and the nurse was going to call to say which arm we were on, i.e, drugs every 3 weeks or 3 months.
It was our daughter’s birthday – we were off to see Hamilton but an hour before, he took a call from the nurse saying he couldn’t join the trial and she couldn’t explain why. A new appointment was set for Tuesday.
Pete doesn’t remember Hamilton – we have since seen it again – he thought he was going to die without the treatment! The only good thing – literally that night NICE approved the combo for use on the NHS. Phew.
On Tuesday we meet the nurse and the oncologist. Unbelievably, Pete’s cancer has gone into spontaneous remission. This is rare – look it up! His lymph nodes are all normal, most of the spots in his lungs have shrunk. No further treatment required for 3 months. We were in shock. It is difficult to explain – we didn’t know whether to laugh or cry!! We did however go and buy a watch for his 60
th birthday - 4 years early!
We had two more scans like this, no change but that one lung nodule was still there and, in the summer, seemed slightly bigger. So plan B. Meet the lung surgeon and sort a lobe removal.
Lung surgery is not much fun – more challenging than the kidney removal, more recovery time required but Pete is a trooper! Anything for NED.
6 months of NED and then the same spot in the lung in the same place reappeared. Right in the middle of COVID.
This time the oncologist recommended the ipilimumab/nivolumab combo – the sarcomatoid change deemed to be an advantage – who knew!! We opted to go privately although the NHS start date was only a week later, more because privately the drugs can be stopped and restarted if required, which can sometimes be more challenging on the NHS. The list of side effects was scary but when you don’t have a choice, you just get on with it!
Pete had to go to all the scans, blood tests and infusions on his own. I drove him there and back to the first one and for all the others he drove himself, no problem. After infusion number one he was scared to go to the loo, kept looking at himself expecting something to happen but nothing did. Other than a dry mouth after number 4 – we think caused by the infusion being made with a sugar rather than a saline solution – only speculation – he had no side effects. So we thought it wasn’t working!
12-week scan and NED!! Lungs all clear.
Pete had about 27 further infusions of just nivolumab – and scans every 3 months. We had a few scares – the odd swollen lymph node caused by a virus but no cancer. At about the 12 month mark he suffered with an immunotherapy attack to his joints. He was so blasé he did at first think it was an old football injury! But when he could hardly walk he had steroid injections and has been on prednisolone and hydroxychloroquine ever since. He is back to being a big bloke – a bit steroid induced – and is about to start a new drug to try and get off the steroids but coming up to 5 years later he is still NED.
In that time he has reached his 60
th birthday (there were no more presents), seen our daughter Emma, and son Matty, both graduate. Matty qualified as a lawyer and in October Pete is about to walk Emma down the aisle.
It is impossible to thank the doctors enough. Their skill has kept him alive and well and the kidney cancer groups like this have kept us sane and informed and we have met some amazing people.
We are so grateful and enjoying every minute of our life together!
There is always hope!
A footnote – the private GPs who never thought there was anything wrong, never followed up and still don’t know if he is dead or alive!! I know it is difficult to diagnose, but really….[/sayit]
