In layman’s terms the treatment paints a target on the cancer cells so that they can be see by your immune system. Normally they cannot be seen. Your immune system then goes to work attacking the cancer cells.
I was told a good result is when I get my next scan after 3 months and 4 treatments that the tumour in my kidney hasn’t grown. An excellent result would be if it has shrunk.
I’m on a regime called ipi/nivo which is combines two powerful drugs, Ipilimumab and nivolumab. I will have both of these drugs via a drip every 3 weeks for 4 treatments. Then a repeat set of scans and if we see good results then a break of 4 weeks and then continued treatment every 4 weeks with just one of the drugs for the rest of my life or until it stops working.
I has a lot of possible side effects and most are treatable, the most common ones being diarrhoea, fatigue, rashes. I have access to a treatment hotline, 24×7 and can discuss any issues or suspected side effects.
I have the worst nights sleep for a long time. The pain meds just take the edge off but never for very long which means I cannot take a deep breath as it feels like I’m being stabbed. I know Katie was awake really early too. It’s playing on both our minds what they’re going to tell us today.
Dreading the appointment with the consultant at 1.30 😩
Tried to get a bit more sleep but failed.
They now want me at 1.10 for blood test first.
Katie doesn’t know what to say to me and I’m in bits, so anxious, never felt like this before.
Arrive for the blood tests get those done then the long wait to find out what’s going to happen. I play on my phone but don’t really pay any attention.
After what seems like forever, but was probably only about 45 minutes, we’re called by a nurse. I can’t keep up with her as I have to walk so slowly now. We go into a small side room and she tells us what’s going to happen, thankfully Katie is allowed with me.
Over the next 2 hours we see a nurse, a registrar, the consultant and registrar and the nurse again and are bombarded with so much information. Katie asks sensible questions but I glaze over.
They confirm I have kidney cancer, the most common type too, Renal Cell Carcinoma, so that’s a good thing… apparently. It’s treatable but not curable and we’re talking years, not months or days. It’s spread to the lungs but I don’t have lung cancer.
Because I’m “young, fit and healthy” (stop laughing!) I’m a good candidate for immunotherapy. When I get drugs via a drip that will turn my bodies own immune system onto the cancer cells. We won’t know if its successful for 3 months and could make me quite ill if I get any of the many, many side effects.
I’ve never felt like this before, I suddenly become so scared, anxiety rockets through the roof, I want to curl up on the floor and wish it would all just go away. I’m on the edge of breaking down massively.
We’ve spoken about pain management and they want me to take more oramorph which I’m hesitant to do. The treatment is so serious I have to carry a card for the emergency services to see. I also have to specifically go to Guildford A&E if there are any issue.
I’m trying all my coping techniques to keep the shakes at bay, I don’t think I’ve ever been this terrified before.
It’s a strange scenario as Katie is clearly relieved but its now become frighteningly real for me. I’d gone from assuming it had spread so much and because I was in so much pain that I wasn’t going to be around for long. But now I have hope, and a long road a treatment. This had never even occurred to me.
On the drive home I don’t say anything, I’m numb. We get indoors and I go upstairs and lie on the bed and let out all the emotions. Just a few minutes of tears, some silence. I don’t need long but I needed to offload everything that had built up over the last few hours
I’m going to do the treatment and it will start this Thursday. Rhian said it needs to get worse before it gets better, I guess she’s right.
We were hoping to find out the results of the biopsy today and hoping to hear from a cancer consultant. No one actually specified today but we’d worked out the 7-10 days and were just hoping to get some news today. We didn’t know what to expect, would someone phone with the results? Or arrange to discuss them?
Katie has also mentioned that one of the nurses from the team at Frimley Park were going to call me regarding pain management as this was starting to get me down now.
I got a call around 1pm, a Guildford number I didn’t recognise. It was one of the oncology nurses from St Lukes Cancer Centre. I had an appointment with a Kidney Cancer specialist consultant the next day, Tuesday 22nd Sept at 1.30.
Then while talking to her I got a second call from a withheld number. These were usually Frimley Park. In my confusion I must have sounded really rude to the nurse I was talking to as I tried to explain I had another call I had to take.
I was one of the nurses from Frimley Park, the results of the biopsy were in and they would be discussed at the appointment tomorrow (worrying!) and they could also help with the pain at the same appointment, so basically she was apologetic that there was nothing she could do for me now.
I relented and had some oramorph. 2.5ml. It just took the edge of the pain off.
Nothing is going to happen for at least a week so Katie and I decide to bring our pre-arranged (arranged before cancer) week off work forward a week. Use what may be the last ‘clear’ week for the foreseeable future to just relax and chill (or at least as much as we could)
And its a great week, the weather was amazing for September. We had a nice (albeit slow) walk at Virginia Water with the dogs
Another nice walk down at West Wittering Beach
We also have a nice meal out one evening with friends to celebrate Kira starting her second year as a trainee nurse. Plus some other nice dog walks
We used the time off to get more lists and paperwork in order. On one of our many chats I tell Katie I’m not scared, I’m resigned to dying and it doesn’t scare me. I am scared about what and who I’m leaving behind. I seem quite calm now and have accepted it.
I also have to start taking pain medication regularly now, not just as needed. I’m on 2 x 500mg paracetamol and 2 x 30mg codeine 4 times a day with oramorph for breakthrough pain. The pain seems to be getting worse almost on a daily basis and that scares me. It’s all around my chest when breathing but moves from side to side and front to back.
Our family and friends now all know and I’m amazed at the warmth and generosity shown to us all but it throws up an unusual issue. People don’t know how to talk to me. I make it clear from the outset that I’m happy to talk but people are uncomfortable discussing it or don’t know how to broach the subject. I understand but I don’t want people to treat me differently.
Towards the end of the week the pain is becoming tiresome and I’m moving less and less to avoid having to breath hard and cause more pain. I’m really hoping there’s a way to get rid of this pain.
Awake before the alarm today, 6:50. Stomach churning about the biopsy. I don’t know what I need to take and start a small panic. Katie is there to bring me down.
Chest pain when breathing seems to be getting worse so I take more codeine and paracetamol.
We’re leaving at 7.30am
As I step out the front door I take a few seconds to appreciate the beautiful morning. It’s chilly but sunny. Autumn is coming.
We park at the hospital and start a long slow walk to the Pre Op Department (POD). I notice I’m getting hot, the masks we have to wear now are stifling and causing me to breathe harder. It also seems like the doorways and signs are getting lower as we walk through the hospital.
Arrive at the Pod at 7.55, they look concerned as I’m breathing so hard and sweating.
Another check in procedure, another cannula. I warn the nurse about me being awkward to bleed. Takes two attempts to find a vein.
The nurse is young and looks a lot like Kira, I’m briefly sad as I might not see her as a qualified nurse. It passes quickly and I scold myself for being stupid.
Dr Hughes, a radiologist, comes to see me and explains what’s happening. He says he’s very careful and has a phobia of needles. I consider his strange choice of career. He puts my mind at ease.
9am and a porter arrives for me. I’m not ready as I have to put my gown on. There goes the dignity again. I make sure to keep everyone updated this time by sending some WhatsApp messages.
As I’m wheeled through the hospital I’m struggling to stay composed, not sure why I’m so emotional today. I’m grateful to arrive in a small dimly lit room. A very happy nurse is waiting for me. Bright purple hair.
Suzanne introduces herself, checks my details are puts me at ease. These a comfortable silence until Dr Hughes comes back.
He explains again what’s happening and gets me to lie on my front while he does an initial ultrasound scan of my right kidney. He also scans my left lung where I’m getting the stabbing pains.
I try to get comfortable but I feel tears pushing and trying to fall. The voices behind me start to fade and I zone out. I can feel lots of poking and pressing.
“I’ll be back in a minute and we’ll start”
More confirmations of my name, procedures as the dr and nurse run through a checklist. Time for the local anaesthetic.
A sharp pain in my back, I can feel it moving around then it dies down. The dr waits a few moments then I feel something inside me. Not a nice feeling as I’m probed and pressed though the hole in my back.
A loud click followed by more movement. I guess a probe. It comes out and another one goes in. It doesn’t hurt but it’s a truly unpleasant feeling.
Another loud click. And we’re done apparently.
I’m helped to roll onto my back and lie there while the dr and nurse and busy.
My eyes cloud over and the tears flow freely. It’s all scary and had become too much again. The nurse comforts me and after a few minutes I get my composure back.
10.10 and I’m back at my bed in the POD. I’m here until 4pm. Bed rest until 2pm. BP and tests every 15 minutes for first few hrs as they have to watch for signs of a bleed.
I make sure to update Katie and the girls.
I’m offered a sandwich and a cup of tea. Again I have no appetite but accept. They taste amazing.
One of the specialist nurses arrives at 10.30 with a Dr to discuss pain. Ironically since the local anaesthetic my chest pain has gone and it’s not hurting at all for the first time since the weekend.
The Dr explains the nodules in the lungs are right on the lining so are being irritated when I breathe, there’s also some fluid in the bottom of the lung. He seemed happy to add oramorph to my “regimen” which can be used when needed.
She explains again I’m being discussed on Monday in the renal MDT meeting. I got her card and a Macmillan cancer book on kidney cancer.
She’s comforting in her manner and reminds me to take it one step at a time.
11.35 the regular BP tests are irritating now. Another cup of tea and some Bourbon biscuits. Now worried if I need to pee I’ve got to use a bottle. I’ll hold it in.
12.20 the book keeps calling me to pick it up. I can’t. That makes it too real. I’m tired.
1.45pm against the odds I fell asleep. Despite the general buzz around me and the now 30 minute BP checks I got some sleep.
2pm last BP check. Biopsy site looks ok apparently. They get me on my feet to check for dizziness. I still have no pain and dread it coming back.
I get dressed and notice some pain in my stomach. I’m hungry I think. I drink some squash and ask for something to eat. A two cheese sandwich goes down well with another cup of tea.
2.30pm I relent and start to read the book. Lots of daunting terms and pictures and I have to put it down after getting about 1/3 of the way through as I can fell my pulse racing and terror forming. I need to read this in private.
2.45pm I’m sure this clock is going backwards. Watching every minute slowly creep by.
2.50 that was a mistake. I opened the Patient Access app on my phone and looked at my medical record. Raw, factual data from medical staff not sugar coated for mere mortals is by far the scariest thing I’ve ever read. Stephen King eat your heart out.
3.05pm and Dr Hughes comes to see me, all good today, recovery is good and I can be discharged early. I tell Katie.
I meet Katie in the POD reception at about 3.25 armed with a big bag of drugs. More codeine, paracetamol, ibuprofen, oramorph as well as a laxative. 😳
When I woke I was greeted with the familiar all encompassing dread. Having dealt with anxiety for 15 years I know the feeling well and had to dig deep for coping mechanisms. Rhian was coming home today and we had to tell her. How are you supposed to do that?
On top of this my chest pain seemed to be getting worse on a daily basis, from nothing before the weekend to being a constant pain whenever I took a breath in. Again without proper information my mind went to a dark place, I was going to die quickly.
It propelled me to keep busy during the morning by writing lists and doing what I could to get affairs in order.
By 1pm I’ve been clock watching for the last few hours, Rhian will be home in an hour. I’m going to turn her life upside down. Kira has decided she wants to give Rhian some room and will be out when she gets home and we tell her. I understand completely.
2.20pm Rhian is home. I can hear her downstairs, happy and smiling and talking to Katie about her trip to North Devon. I’m going to ruin her life, How do I do this? It’s not fair.
I wait for her to come to me, give her this time.
4.30 That was by far the hardest couple of hours and it was just horrible. I felt so guilty and Rhian was knocked for six. We just kept chatting, hugging, crying, full on sobbing and repeating. I know this is just the beginning but we had an acceptance after about 30 minutes.
Winston made us laugh as he picked up on our emotions and wanted to comfort us. Dogs aren’t stupid.
Like all of us she needed a bit of time to herself to absorb the news and then she started asking good questions.
I was glad when Kira was home and we could all hug and have team Davis complete and facing the long road ahead.
After a night in my own bed with lots of emotions, trips to dark places, Katie and I have a good talk. We talk openly about things we’d both been thinking of. I could die. What’s going to happen financially for her and the girls. I never knew we could cry so much.
Should we tell Rhian yet (she’s on a weekend away with a friend and back in a day, we decide not to and to let her enjoy her break)
Kira knows and we’ve said we’ll be honest with her at every step.
The problem we have is we’re not sure what happens next. We’ve been overwhelmed with information but it’s just a jumble of information.
Then I get a call from one of the renal specialist nurses from Frimley Park hospital who takes control. I’m having a biopsy on Thursday (today is Tuesday) and from there there’s a 7-10 day wait for results. However as they are certain from the presentation that it’s cancer they are also pre-emptively referring me to a consultant at St Lukes Cancer centre in Guildford. The hope is that I’ll get the referral appointment at the same time the results come in.
I have to have another covid swab before the biopsy but that’s it and that’s all been arranged for me as well.
I’m amazed things are happening so quickly, everything so far has been on the NHS and has been faultless. I’ve confirmed I have full cancer treatment cover on Bupa and can swap back and forth as needed but right now there’s no need.
I have another open conversation with the HR manager at work and am comforted at the sickness cover and death in service cover that means we won’t be impacted financially.
I also start to make a list of things I have to do, top if the list is write a will.
Steve has invited me to become a contributor. And I hope to add some insight as to how it is from “the other side”.
He says everything so eloquently, and for a man who is hard to get much out of in a conversation (those of you who know him will know what I mean lol), he writes beautifully and it helps him process what is happening.
He’s already posted about his end of the diagnosis process but here is some of it from my view point.
That first night, when he was admitted, all he told me was that they “had found something on his lung” – oh well, I thought, they find things on lungs all the time, it’s likely to be some scarring from that nasty nasty chest infection he had that literally floored him for 3 months in early 2019. He didn’t tell me that he had been told it might be cancer. I (honestly) thought he was being overly dramatic, and that in the morning they’d do another few tests and we’d bring him home and all would be well.
The next morning I went to work, I told my boss I’d have to take him home at some point, and that I was sure it was nothing to worry about.
(Perhaps I should mention at this juncture that Steve’s glass is always almost empty, mine is always almost overflowing – we usually balance each other out nicely :))
Then I get some messages from Steve saying he’s seen a consultant who has told a bit more about what they have seen on his chest CT scan, and that there’s lots of dots. And that the next thing they want to do is a pelvis and abdominal CT scan to see if there’s anything else to worry about.
My glass very rapidly empties.
In the last few weeks he’d been having blood tests, and one of the things they had identified was that his iron levels were high, and they had done further tests to make sure his liver function was OK, as this could be a cause.
My head immediately went to “what if it’s liver cancer, it must be liver cancer, and it’s already gone to his lungs”. My colleagues and my boss told me that was obviously a very bad worse case scenario, but honestly, I was jumping to conclusions and I shouldn’t worry just yet.
Because of Covid, I can’t go and see Steve. I’m in the same building, it’s frustrating. His consultant “is going to come and find me” and talk to me – hours later (probably only 1.5, but it seemed like a lifetime) I track her down, and she asks me to come down to the ward. I see her and she puts me in a room and says they’ve just got Steve’s second CT results, and he wanted to go through them with me with him. Did I want her to go through anything first, or get Steve in. I ask her if it’s bad news, and she tells me “it’s worrying”
She goes and gets Steve, and it plays out as he has explained in other posts.
He goes back to his bed. I go back to the office, except I get as far as the office of a wonderful friend and colleague, and I fall in her door and sob. She mops me up, we have an honest conversation. Kidney’s are ten a penny – you can live without one of those. Tumours in both lungs – that’s bad news. I’m not daft, she knows I’m not daft, she’s a senior nurse and tells me straight.
I get back to the office – I sit in my corner and retreat into myself. My wonderful colleagues listen and offer what support they can. They remain my rocks.
I go home, I tell Kira. We go back and collect Steve. We bring him home.
And we cry, and cry, and cry. And Hug. A lot of clinging to each other happened in those first few days.
Lights come on about 7am and I keep flipping from acceptance to crying to feeling guilty that if I die it’s everyone else that’s left to deal with things. I hate that others are going to be upset because of me.
“What would you like for breakfast?” Someone rattles of a breakfast menu, I can’t face food but ask for juice, cornflakes. Bacon? No. Roll? No. Nothing else? No.
A Dr I saw last night comes and sees me with a few more questions, more details of what’s happening today. I can’t recall any of the questions he asked.
I wait. I want to go home and hug Katie.
The Dr comes back with a consultant, Anika something, wearing red scrubs. First red ones I’ve seen.
She explains again what has been found and what they’re looking for today. They’ve found some spots on my lungs while looking for blood clots. Took everyone by surprise. It could be cancer it could also be an infection, or benign or any number of things. They have to scan the rest of my organs to see if its spread from somewhere else.
She asks if I’d like her to speak to Katie and I explain that Katie works in the hospital and she kindly offers to update her.
Katie is in bits and there’s nothing I can do. I feel sorry for myself and her. What are we going to do?
About 9.30am I’m handed a bunch of menus and asked to decide what I want for lunch, dinner, breakfast, lunch. I pick random choices, again I couldn’t tell you what I chose I just stared blindly while ticking boxes.
I keep pulling the curtains back round to seal me off from the ward. Man across from me wants to tell everyone his war stories and is desperate to chat. Sorry, I’m not.
It takes everything I have not to start crying uncontrollably on the way to the scan. I’m greeted by a cheery nurse with a Newcastle accent. This is strangely comforting.
I have the scan and am taken back to the ward. I lie down and start sobbing again. I don’t get long to wallow as lunch arrives as I have to compose myself.
Katie is desperate for information, sounds like she’s going through the wringer but there’s nothing I can do. She’s not allowed to see me either due to our ward being for people who’ve been COVID swabbed but with no results yet.
The consultant comes back around 1pm they have my 2nd scan results and she’d like to discuss with me and Katie together. She’s already got Katie in a nearby room. We see each other and just sob and hug. Consultant looks a little awkward but tells us they’ve found a mass on my right kidney too. Worst case scenario is that it’s a kidney cancer that has spread to my lungs.
Ok so I can get worse news. Who knew! They now have to get a urology consultant to see me.
Katie is asking intelligent questions while my mind races of down the worst possible path. After about 15 minutes the consultant leaves Katie and I in private. We sob and hug. Katies been doing it all morning on her work colleagues and I’m quietly pleased she’s been able to do that. We agree we need to tell Kira but won’t ruin Rhians holiday by telling her yet.
I leave her to go back to the ward without looking back. I want to have some dignity as I walk back to my bed. The curtains have been pulled back again, I pull them back round again. I lie down and cry. I don’t want to die.
Katie has gone home to tell Kira. I’m devastated I can’t be there but know its not something Katie can keep from her.
The urology consultant comes to see me at around 3.30pm. Explains in a roundabout way they’ll also need a biopsy, a team will be meeting to discuss my case this week..or next. Tells me possible outcomes, if it’s cancer, they can remove some or all of a kidney but they will probably give me chemotherapy (which is now called something else but I can’t remember) via tablets which could reduce the mass, could also reduce the ones in the lungs too.
He leaves. My head is spinning. Then suddenly I have a clearness. I may have cancer, I may die. I may not. But I have to get my life in order. I have to make sure Katie is protected financially as well as emotionally. I have to make sure I leave instructions for everything only I know how to do. I start a list. It feels positive.
I feel pragmatic, what will be will be. I write more of my list. I have to make sure she has all my passwords.
I was cutting the grass and got a lot of chest pain and was very out of breath. I panicked a bit as it hurt to take a deep breath and was starting to hyperventilate. There was a stabbing pain in my lower left back on every breath in.
Katie insisted I call 111 and my belligerent self thought she was being over dramatic.
I called them, they called an ambulance. Oh.
Paramedics checked me over and everything seemed ok, nothing going on with the heart. BP a little high, again. But paramedics wanted to get me checked out as there was something going on. Off to the hospital after being given a couple of paracetamol.
Hot flush in the back of the ambulance, felt a bit sick but sure that was just travel sickness.
Taken to Frimley Park, straight into majors, room M9. I would be here from 14:45 to about 23:00.
First nurse puts a cannula in my right arm, pink, takes lots of blood samples for testing. Usual story, I’m an awkward bleeder.
Finally see the Dr at about 15:30, lots of questions, history, no obvious conclusions yet.
Dr wants me to have a chest X-ray. Paracetamol finally seems to be working.
Go for chest X-ray at about 4.30pm and when I come back the nurses were quite excited, they’d been looking for me. Blood tests had shown a possible clot so need to have a chest CT scan. also need to have a green (bigger) cannula installed. Now have one in each arm. Also asked to give a urine sample. Decide to do that straight away. It’s like treacle. So dark, never seen it like that before.
Go for CT scan at about 5.30pm. Never had one but told I’m getting some dye injected and have to complete a questionnaire. Scan was painless no where near as bad as my Shoulder MRI last year.
While I’m having the scan I notice the pain taking breaths is coming back again. Quite quickly. But no longer in my left lower back but now on the upper chest on the left. Like a hot needle when breathing in.
I get wheeled back to room M9 and call for a nurse for some pain relief and she says she’ll go an find a Dr. This is about 6.15pm now. Pain is becoming excruciating. I have tears in my eyes, literally rolling around on the bed in pain. Nurses keep coming in saying they’re waiting for the Dr. I just ask pleadingly for something now.
Eventually a nurse comes in with 2 codeine, and I manage to swallow these hoping for some quick action. Pain still seems to be rising.
Pain starts to ease about 20 minutes later but is still very present.
The young Dr comes back at about 8pm, he gives me some IV paracetamol which start to work very quickly.
He starts asking about a lot more history, why did they think seasonal asthma, have I had any pain before today, urine problems, back pain. About 15 minutes asking lots of questions and I’m just assuming they’re still looking for answers.
Then he drops a bombshell. “I have some bad news. Do you want someone to be with you”.
I say no.
“We found something on your CT scan…….”
I zone out. I can see his lips moving but I’m not really picking anything up.
“…lung….spots….abnormality…cancer..sorry”
I’ve gone numb.
I actually zone right out, I must be dreaming, I can see myself on the bed, like from a camera in the corner of a room, then instantly I’m back.
“..anything you want to ask?”
I ask what this means and he says I have to have another CT scan but of the abdominal and pelvic areas, they need to see if the spots have originated from anywhere else. He asks me more than once, have I ever been exposed to asbestos, ever smoked.
They’ll admit me overnight and do the scan in the morning.
I feel empty. I need to see Katie and hug her. I text her that I have to be admitted but say nothing else. She sets off for the hospital.
I go straight to worst case scenario, “I have lung cancer” why me?!
Katie arrives at 9.45pm with a text “just queuing to get in 🤣”. How do I tell her..?
Then the nurse brings my overnight bag, they haven’t let Katie in to see me. I start losing it. “I have to speak to her”.
“Can’t you phone her?”
“No!, I need to see her”
I remove the o2 sensor from my finger and an alarm starts sounding, I remove the blood pressure cuff and head for the exit and phone Katie.
We meet outside A&E, I see her and crumble. She gets me to a wall to sit down. I tell her through sobs “They found something on my lung”
We cry, we hug. “We’ve got this” she keeps saying. “Whatever this is, we’ve got this!”
After a few minutes we part and I have to go back in and Katie has to drive home. Our world has just been turned upside down and we have to be apart. Fuck you coronavirus.
My chest hurts, I cannot get back into the A&E room, I want to cry, I want to curl up but I’m standing in the A&E waiting area and just want to get back to my room. After what seems live forever but was probably only a minute someone comes out and I go in. I find my room and bed and cry. Sobbing makes my chest hurt.
Katie texts me from home, we’re not telling the girls yet so she cannot cry on anyone’s shoulder and I hate that she has no one.
I go up to the ward at 11.15pm. G4, bay e4. There’s 3 other men in the room and I’m shown to a bed in the corner. No pillow.
I get weighed and well as have BP, HR, temp taken (this happens every 4 hrs while I’m here).
I lie there, staring at the ceiling. People are snoring. Loudly. There’s lots of things happening, my mind is rushing around.
I say to my self, “I’m going to die.” I have tears rolling down my face, I sob quietly, never having been so scared.
