Big Steve Big C

Author: steve

  • Bringing the blog up to date

    All of my posts so far have been backdated to the actual dates of events but now we’re pretty much up to date. The feedback on my blog has been overwhelmingly positive so thank you.

    I had my 2nd immunotherapy treatment on Thu Oct 15. There was a long wait of over an hour between the first drug going in and the second one. Apparently this is due to the pharmacy only making them up on the day and just being very busy. This is quite normal apparently I was just lucky that it was quicker on the first treatment.

    The only noticeable side effect from the 2nd treatment was some hot flashes a few times a day for an hour or so. No way of controlling it other than open windows, fans and wearing shorts all the time to try and stay cool. These lasted just over a week before fading out.

    The fatigue and constant tiredness is there still and I’ve had days where I’ll have a sleep, be awake 20 minutes then need another sleep. I keep being told this is your body fixing itself. I hope so!

    I’m getting into a routing of taking drugs and pain meds every day and have had no ill effects from the morphine dose I’m on (60mg twice a day).

    I’ve also had a few phone consults with a physiotherapist from Phyllis Tuckwell too. She’s trying to help me get my breathing and lung use back to normal. I’ve had a couple of months of not breathing deeply and fully using my lungs and have to be reminded to keep breathing to full capacity.

    She also wants me building walking stamina up. I’ve spent a lot of time recently just lying still and moving as little as possible to avoid pain so I’ve got to start gentle walking again and get moving before I get long term muscle and joint issues.

    This last week I started with 0.6 miles, then 1.2, 1.6 and yesterday 2 miles. I feel I may have gone too far too fast as my knees have gone all stiff over the weekend. I hope its the walking as joint pain is also a potential side effect of the immunotherapy.

    I have my 3rd immunotherapy treatment next week which means I have to have a blood test on Monday, a consult on Tuesday and then the treatment on Thursday.

    As a family we’re holding up well. Occasionally the emotions spill over but that’s ok as we support each other and have lots of friends and family looking out for us. We have so many offers of help but realistically there’s not much people can do.

    I still ask that people don’t feel sorry for me. Don’t give me that sad look when you talk to me. Be normal. We can talk about it, it doesn’t have to be the elephant in the room and its much more comfortable to just be at ease talking about cancer. Yes its shitty bad luck but we can laugh and joke about it too.

    I’ll finish this post with an example. A few weeks back right when my cough was causing me grief I was having a particularly noisy coughing fit on the sofa in front of the family and Rhian says, completely straight faced,

    “will you die quietly!”.

    I laugh out loud and so does she. 😂 You have to find light in the darkness.

  • Pain Management Journey

    The days following my first immunotherapy treatment and hospital visit were overshadowed with one thing. Pain. It was all encompassing and anyone who’s had chronic pain knows that this takes over your life.

    I don’t like pain, I don’t think that’s unusual but I would do anything possible to avoid pain. When I first discovered I had cancer I told Katie I didn’t want to be in pain. When talking to the medical staff I said the same and they all dismissed it as something I didn’t have to worry about as pain was easy to manage.

    Having pain that’s there 24×7 and is tied to my breathing so is something I cannot avoid became unbearable. At times I got so low I just wanted someone to switch me off. Added to the chest pain the unwelcome return of my cough was also adding to pain. I just became so tired and exhausted.

    I’d been given prescriptions for all the meds I needed and as mentioned before I was already maxed out on codeine and paracetamol so had to manage the pain with oramorph. This was taken as a 2.5ml syringe of liquid into the mouth.

    I started off adding 2.5ml a few times a day. After a few days this became 5ml every 4 hours. I noticed that the higher doses seemed to dull the pain fairly quickly but it never lasted more than 2-3 hours. I was also very very conscious of the side effects of morphine. Not least being how addictive it could be. Opiates are strongly regulated for a reason.

    After finding out what the maximum amount of morphine I could take each day was it took me another few days to reach 10ml of oramorph every 4 hours. The issue was that before the next dose was due the pain would come back. I was now maxed out on oramorph and didn’t know what to do. 60ml of oramorph equates to 120mg of morphine. I was also getting side effects of morphine with cold sweats, headaches, dizziness and a general feeling of being out of it.

    The pain was exacerbated with the coughing. The coughing fits got worse and more aggressive with me getting the point of nearly blacking out on more than one occasion. Progressively I added to the chest pain with muscle pain around my ribs and chest where it felt like I’d been repeatedly beaten. This culminated in one really bad bout of coughing one evening where I was in tears and fighting for breathing and trying my hardest not to hyperventilate. It lasted about 30 minutes before I got it under control. Warm orange squash with honey seemed to help.

    The morning after the coughing fit I was in excruciating pain whenever I tried to lie down. I couldn’t lie on my back or sides and was convinced I’d cracked a rib or something. There was so much pain at the bottom of my ribs in my back.

    For the rest of the day I felt so helpless, trying to sleep sitting up, but couldn’t, exhausted to the point of tears. Katie was desperate to help me so reached out the to Macmillan Nurses at Phyllis Tuckwell hoping for help with managing the pain.

    We got some advice on changing the morphine doses as well as an appointment with a specialist pain Doctor on Thursday (it was now Monday afternoon.)

    I was told to switch the oramorph to a smaller dose but to take it more frequently. So take 5ml every 2 hours, 24 x 7. I was desperate and was happy to set a timer every 2 hours if it meant I could manage the pain. I started at the very next dose, 5ml. 2 hour timer.

    I continued to take the morphine every 2 hours, including waking myself up over night. The following morning I was amazed that the pain had dulled significantly. Also the cough had died down a lot too.

    By that night the pain had gone completely. I’d forgotten what being pain free felt like it had been such a long time. The down side was that having morphine constantly in my bloodstream made me high as a kite. It wasn’t a bad feeling but I knew this wasn’t something I could manage long term. For now I didn’t care.

    I’d worked out that with the codeine and the oramorph I was taking about 155mg of morphine a day. This was a lot, I knew that. So did the pain Doctor I saw on the Thursday that week.

    She spent a long time with me and Katie and came up with a plan of switching to slow release morphine. This was easier to manage as each dose lasts 12 hours, it is usually tolerated better by the body. The plan was to switch to 50mg of morphine twice a day. Oramorph could still be used for breakout pain and if needed we could go to 60mg. I would also still be taking paracetamol.

    I got the prescription and started to take the meds on the Thursday night. 8pm 50mg and fingers crossed.

    8am and another dose taken along with 5ml of oramorph. I was disappointed but the Doctor was going to phone me later that morning. She told me to switch to 60mg from now on.

    And that was it! The next day there was no pain, no oramorph. I didn’t feel as groggy/stoned as before and the pain had gone completely. It took a few days for me to be brave enough to start taking full deep breaths again. I was constantly expecting the stabbing pains but they never came. It was such a relief.

    As I write this (Oct 26th) I’ve been on this dose of slow release morphine for around 3 weeks now and I’m happy to say the pain is still under control.

  • The floodgates open

    I only got home from hospital a hour ago. Katie and Kira have been to Sainsbury’s and got me some lunch and lots of kefir options. I have a sandwich, crisps, a pepperami, they don’t last long, I hadn’t realised how hungry I was.

    The mango kefir is an unusual taste, very thick, seems to want to be fizzy but isn’t. The strawberry one is much nicer, just like a drinking yoghurt.

    About 4.30 I try to get some sleep. I can’t as the cough is keeping me awake. It’s bothering me now. I try just lying still but the cough persists.

    Kira heads back to Uni as she has another placement shift in the morning.

    10.30pm I’m the only one downstairs and start to get quite upset. I don’t know what triggers it but the cough is getting me down too. I’m trying to hold it together but failing. Thoughts and emotions start spiralling, I’m spinning out of control. The thoughts scare me as I don’t know where they’ve suddenly come from.

    Rhian comes down from her bath and I break down in the kitchen, sobbing, leaning against the work surface. She comforts me until I gain some control. I’m getting scared, I start doubting if I can do this whole cancer treatment thing.

    I go upstairs, our room is dark and I just sit down on the end of the bed and start to unravel. Before I know it the lights are on and Katies there and I start crying. Big loud sobs like I’ve never experienced before.

    3 weeks of pent up emotion comes flooding out and I can’t stop it. I’ve never felt this sad, useless, scared ever. I say out load “I can’t do this!” Over and over again through sadness and tears I’ve never felt before.

    Rhian also joins our huddle. I don’t know how long it lasts but the 3 of us hug. I wish Kira was here to complete Team Davis.

    11.15pm and we all go to our beds, I lie there for an hour or so before drifting off. I don’t know why but I take a selfie of my red, blotchy tear stained and puffy face. I think I need it to remind myself how low I got.

  • That wasn’t planned!

    The night after the first treatment was very uncomfortable with a lot more chest and side pain than normal. The next day, Friday I spent most of it just lying down and moving as little as possible as this meant less pain.

    I’m on my own all day as everyone else is out and generally feeling quite down with the pain, the morphine is having to be used more and more just to keep it down. The paracetamol and codeine on their own aren’t enough.

    The next morning, Saturday I’m still in so much pain and fighting to control my breathing. Katie insists I call the treatment hotline who in turn want me to come into A&E in case I have some clots. They let A&E know I’m coming in.

    Again I’m seen very quickly but hate that I’m on my own again

    After more blood tests, chest x ray, ct scan they confirm there are no clots but there are small effusions on both lungs, my temperature is slightly high and one of my blood markers (inflammation) is very high.

    They suspect I have an infection on the lungs and want to start IV antibiotics. They also want to admit me. I’m alone in the room in A&E and want to go home, I want to cry but lust about hold it together. Feeling really low now.

    They hook me up to an antibiotic IV of Tazocin and within a couple of minutes of getting it my face feels very blotchy and hot. I’ve had an allergic reaction. Luckily it dies down almost as quickly but it was a horrible sensation.

    Drs agree not to give that to me again and switch to oral antibiotics.

    I’m initially transferred from A&E to the Emergency Assessment Unit. I thought that’s where I was staying for the night but after about an hour I was then transferred to a ward. I got a private side room which was really nice but I felt so lonely and fed up.

    I have my dinner which was surprisingly nice and settle in for the night. As I’m lying there I notice for the first time that the pain as dulled significantly.

    I’m woken up at 6.30am by a nurse with pain killers. I don’t feel rested at all but the pain has dulled further however I notice an old friend has returned as my cough has come back. I’d not had that for a few weeks now.

    An oncology Dr arrives with the same registrar we saw on Tuesday. He confirms an infection but temperature is normal now and asks if I want to go home. Of course I do.

    He tells me I need to consume lots of Kefir, a yoghurt drink with lots of bacteria. Apparently antibiotics and reduce the effectiveness of immunotherapy so this balances it out.

    My lunch arrives and I’m starving hungry. I also don’t know what’s happening or if I’m going home today.

    12.40 a nurse comes in to tell me I’m going home.

    2pm I’m home. Cough is really annoying now but virtually no pain. I feel good. Also hungry.

  • Immunotherapy treatment #1

    I seemed to get a good nights sleep last night. I never wake up after sleeping feeling refreshed though, just in a permanent state of groggyness. I have the oramorph to thank for that.

    Only a slight anxiousness in my stomach for the appointment later today. Not really hungry but force down a nakd bar and a couple of cups of tea.

    Getting lots of messages from well wishers which makes me feel good. I’m ready to do this.

    We leave at 1.30 for St Luke’s Cancer Centre. We don’t really talk much in the car. Katie drops me off with a massive hug and heads home. Covid means she can’t stay with me.

    I walk very slowly to the chilworth ward, go to reception to check in and am told I’m missing an appointment card. They’ll sort it. Room 2

    Room 2 isn’t far down the corridor I go in and meet a nurse who shows me to a high back chair in bay 6.

    The room is full with every bay occupied, some chatting but most lost in their own thoughts. It’s 30 minutes before I’m hooked up to a drip.

    I found out earlier today the cheapest of the two drugs in the ipi/nivo combo is £3000 and the more expensive one is £30,000! They don’t even prepare it until they know you are on your way.

    First drip is hung at 2.35pm and lasts 30 minutes.

    The time goes really slowly, I put on a podcast but don’t really listen. I can feel my arm first go cold and then start to feel a warmth in my stomach. It’s not unpleasant but doesn’t feel right.

    After the first drip finishes I have two 6 minute saline drip flushes before the second drip is added, also for 30 minutes.

    Finally when that finishes a final 10 minute drip flush is started. I message Katie to come and get me.

    I’m disconnected, bandaged, get another appointment for 3 weeks (Oct 15) and then slowly make my way outside. I’m only there for a few minutes before Katie arrives.

    That’s it, first session over. I was warned of possible diarrhoea so have yet more tablets to deal with that.

    Again I’m not really talkative on the way home. There’s a bit of traffic as a distraction. I feel a bit empty, almost like an anticlimax but know side effects will come later.

    I grab a few hrs sleep before dinner and don’t have much of an appetite. I can feel myself getting warmer and then colder. A bit ‘fluey’. This progresses through the evening so when I’m going to bed at 10.45 it feels like I have a fever coming.

    In bed I’m hot one minute and cold the next, tossing and turning and feeling a little spaced out. Almost like I’m hallucinating, this lasts most of the night then just stops.

    I’m greeted with the familiar chest pain again, it seemed to have dulled for a few days but has come back to the fore again. Oh joys.

  • What happens with immunotherapy?

    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.

    A better description can be found here

    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.

  • It gets very real, and very scary

    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.

  • Results are in

    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.

  • Let’s have a holiday

    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.

  • Biopsy Day

    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. 😳