Big Steve Big C

Tag: medication

  • 1 week down

    What a shitty week. I hope the rest of 2021 gets better.

    I’ve had a week of work where I’ve basically achieved nothing as I just cannot focus and concentrate properly. I feel really guilty as I was hoping, rather naively it seems, to be able to get back into the swing of things quickly.

    I’ve seen 2-4am at least four times in the last 7 days as my mind is so busy worrying about treatment and what’s happening (or not happening) that it’s screwing with my sleep.

    And to round off the week I’ve had full on flu like symptoms and aches all over following my treatment yesterday. The first single Nivolumab treatment knocked me for six today.

    I had a temperature, I had to reach for the breakthrough pain relief for the first time since switching to Oxycodone to try and deal with everything aching. I slept from 3pm to 10pm (and am now wide awake)

    I had started the ball rolling to try and get a CT scan done privately then out of the blue I got a call today from Frimley Park hospital radiology (NHS) wanting to know if I was ok for a CT scan next Wednesday. Er.. yes!

    So while I’m desperate to know if my treatment is working I now have even more “scanxiety” knowing that I will find out next week.

    So I’m really hoping that “things can only get better” now.

  • ‘Tis the season…

    It’s been a strange week since my last blog post. We’ve put up our tree and lights and I’m starting to feel a bit more Christmassy. A few Christmas films have been consumed, along with some mince pies and my first beer in 4 months.

    But this week has been dominated by two things. Bloody COVID again. The south east of England is seeing another major spike and apparently a new strain. The U.K. government isn’t handling things well introducing last minute changes, confusing tiers and generally buggering up Christmas for millions.

    Selfishly for me, I’m concerned how this impacts my CT scan and ongoing cancer treatment as lots of hospital treatments and operations are now being cancelled. Katie is expecting that work for her will creep in over the few days she had off as all their emergency procedures are coming back into play with daily emergency meetings being called every day, including weekends. I have to call the CT department this week to see what’s happening with my appointment.

    The Covid restrictions don’t really impact our Christmas plans much but I know a lot of people who are not going to be celebrating with their loved ones due to this pandemic. I really feel for them.

    The other focus this week has been wellness/fitness for me. It’s been… odd. One day I’ll feel absolutely fine, as if I had no illness at all then I have a few days with no energy, even simple walks become exhausting again. Then be ok again for a day.

    I’ve had joint and muscle aches and really struggled with sleep. Since coming off the morphine and switching to oxycodone my sleep has been terrible. I’m tired but just cannot sleep due to aches in my hips, knees, back, elbows. Pretty much anywhere.

    I’ve now had at least 4 nights where I’ve seen 5am before falling asleep. This then screws up the following day. I plan on speaking to the Macmillan nursing team tomorrow to see if these are normal side effects of the switch and if anything can be done.

    What I crave more than anything is consistency. The changing symptoms are hard to deal with when you’re used to feeling a bit better.

  • A good few days

    Since the weekend I’ve had a good couple of days. We had a nice walk around Frensham pond in the sunshine on Tuesday, just me and Kira. I noticed that the drop in temperature has affected my breathing a little. Made it a bit harder but nothing too bad.

    Appreciate the simple things now

    Today I had a very wet walk with the dogs. If I’m honest I prefer it like that as it’s quieter.

    I’ve been sleeping well, no vivid dreams for a few days either. Depsite me not getting my new meds until today. I’m hoping this improves even more. I hadn’t realised that a lot of people have the same issue with morphine buildup in the body.

    I also need to keep my breath exercises up as my chest is very tight when I breath deeply. Not a sharp pain but just a muscle ache. I’ve been unconsciously not breathing deeply again so when I do I just feels tight. I hope the by forcing some regular deep breaths that it start to feel normal again.

    My thinking is that lungs are muscles and like all muscles if you don’t use their full range then they weaken.

  • Time for a change

    I finally did it and spoke to one of the nurses at Phyllis Tuckwell.

    After a day of the worst vivid dreams so far and a bit of dizziness when trying to sleep (think room spinning when drunk) coupled with some nausea and some creeping breakthrough pain for the first time in a few months I finally had to admit something has to change.

    Luckily she phoned me first and forced my hand but agreed that it’s likely my kidney isn’t excreting the morphine (whatever that means) properly.

    I’m going to be swapped to something that’s twice as potent as morphine, but I’ll have the same equivalent dose. It’s also supposed to have less chemicals and be tolerated by the body better than morphine. I think she said it was Oxycodone.

    I also questioned why I’m starting to get some breakthrough pain now, even though it’s minor. I was told it’s likely just “things progressing”. Not sure what that means but it’s worrying.

    I’ve also written to one of the nurses who works with Professor Pandha to query why removing my kidney was dismissed right at the start. I never really understood but just went with what I was told.

    I’ve heard of a couple of people with the same presentation as me, on the same immunotherapy now but they had kidneys removed right at the start and are having great results. Obviously I don’t know my results yet but it sparked a curiosity in me why it wasn’t an option. I’m someone who needs details and facts.

  • Dreaming and Confusion

    Over recent weeks I’ve been having quite vivid dreams. The sort you remember clearly even once you’ve woken up. Some of these have been very distressing and a few times Katie has woken me up as I’ve been making strange noises.

    A few times recently I’ve woken up really confused. Not knowing where I am, what time it is. I’ve also been dizzy and generally discombobulated on these occasions.

    Over the weekend, I woke up suddenly from one of these dreams, it was light so must have been about 7am. With the dream still vivid in my mind I went to stand up to go to the bathroom and immediately lost my balance and sat back down on the bed. I think more from shock than anything else this upset me and I felt foolish as I started to cry a little bit. I was so confused.

    I’ve been trying to find out what could be causing this and there’s many culprits but the most likely I think is the morphine. Odd that’s its happening now after being on it for so many weeks. I’ll speak to medical teams this week for advice.

  • Our amazing NHS

    I’ve always taken our health service for granted. It’s always been there during my life time so I’ve never had to worry if I can afford treatment. Yes in some situations there may be a wait for treatment but that’s largely down to successive governments cutting funding repeatedly.

    What I’ve found with my cancer diagnosis is that the services and staff are faultless and I’m treated like a VIP.

    I’ve been trying to calculate approximately how much I’ve had spent on me but to be honest I have no idea but it’s well in to 6 figures.

    From my first ambulance ride on a Sunday to getting X-rays, ct scans, pain killers, a biopsy a few days later, a consult with an oncologist as soon as the results were in and immediate access to immunotherapy I’ve had no need to consider using my private medical insurance.

    So far:

    • 1 ambulance trip
    • 2 ct scans
    • 2 chest X-rays
    • 1 local anaesthetic
    • 1 biopsy
    • 10+ prescriptions
    • 2 overnight hospital stays
    • 15+ blood tests
    • 3 consultations with a renowned oncologist
    • 3 rounds of immunotherapy at £33,000 each

    I think this could easily be £150k by the end of the year and I’ve not had to spend anything.

    So thank you to our amazing NHS!

  • 3 down, 1 to go

    Even though I’ve been through this process twice before I’m still very nervous. Each treatment adds to the drugs already in my body and increases chances of side effects. This scares me.

    I don’t get much sleep the night before and know its going to be a long slow countdown to 1.30pm.

    First part of the process is to phone the Aseptics Pharmacy just before we leave to confirm we’re attending the appointment. This confirms they can make up the drugs needed for the treatment.

    I turn up at 1.30 on the dot discover the lift is out of action so I have to take the stairs for one flight. Not much for a normal person but for me this is an effort. Puffing and breathing hard I get to reception and give them my appointment card. She ticks me off a list and tells me to go to room 2. So far so good.

    Arrive in room 2, I can see 2 spare chairs so wonder which is mine. I introduce myself to one of the nurses in the room and she checks the list. Makes a concerned noise and checks the computer. She asks for my NHS number which I give her.

    “I don’t have any appointment for you today, sorry”. I explain the date was written on my card and the receptionist has checked me off a list. So we go back to reception. I’m getting more anxious now and very warm.

    No receptionist. My mind makes a leap, maybe she was an imposter 🤣 don’t be stupid. Nurse sees receptionist down the corridor outside a small office. As we approach its apparent they’re talking about me already.

    I’m asked to take a seat in the corridor and everyone disappears into the office and I hear my name, date of birth mentioned a few times. I’m very conscious that people in the rooms already hooked up to IVs are staring, something interesting is happening.

    It’s about 10 minutes before a different nurse approaches me, very apologetic. There’s been a mix up. My appointment had been moved, I thought she said to Monday. I panicked as I didn’t know if this would impact the treatment as dates and timings were important.

    She said I could come back or the pharmacist had agreed to make up the meds today but there would be a 1-2 hour delay before they were ready. No brainier, I was there and I didn’t want another anxiety filled night and morning so I’d wait.

    I was directed to a coffee area and waited. I also got hotter and hotter and the face mask I was wearing wasn’t helping at all

    Time seems to pass really slowly but the nurse keeps coming back and updating me. Eventually, around 3pm she comes and gets me to go into room 4, chair 2.

    Things happen with normal NHS speed and efficiency then and I’m quickly hooked up to the IV machine and the first saline drip is connected. After about 10 minutes this is removed and after a name and date of birth check, the first drug is connected, the nivolumab. Timer is set for 30 minutes, more waiting.

    I start listening to some podcasts and try and relax and not think too much about what is going into my veins.

    When the drip finishes an alarm goes off and I’m quickly attended to and swapped to another saline drip. The second drug isn’t here yet so we wait.

    And wait.

    Another 20 minutes pass and the ipilimumab arrives in a yellow bag from the pharmacy. Another name and DOB check and I’m hooked up. This is the really expensive (£30,000) and really toxic drug. This is the one that is stopped after 4 treatments. Another 30 minute timer.

    By the time this one finishes, I’m the last patient left in the room so don’t feel guilty taking a selfie.

    Another 10 minute saline drip and we’re done. I go and meet Katie who has just arrived to pick me up.

  • Fatigue isn’t the same as just being tired

    The biggest side effect of my illness currently is fatigue. I’ve never experienced anything like it even though I’m someone used to having naps and enjoying sleep but also experiencing being tired through not getting enough sleep in the past.

    This is not fatigue.

    I can only describe it as constantly having a phone battery at 5% and running in low power mode. Everything is an effort, almost in slow motion. I feel drained all the time, despite eating and drinking I have no energy. Despite sleeping for what seems like 99% of the time I’m still tired.

    I’m constantly told “its you’re body repairing itself”, which I guess is partly true. It not a great feeling though.

    I’m now struggling to make it more than an hour or so without some sort of nap and when I do have a nap I have to make sure I set some sort of timer for 30 minutes to wake me up. This is so I don’t lose hours by falling into a deep sleep. I did this a few weeks back, went for a nap at about 4pm and despite waking briefly a few times was in bed until 8am.

    And I was still tired after that!

    In an effort to control my sleeping patterns I’m now going to bed very early, usually by 9pm. The amount of fluid I’m drinking each day, combined with the fact I only currently have one functioning kidney means I visit the bathroom at least 3 times a night (that’s not helping the sleep either!) and then I wake around 8am.

    I’m informed that some of the fatigue is down to medication, some is due to the illness but some is also down to lack of fresh air, lack of exercise over the past few weeks. So I’m now making an effort to rectify some of this.

    I’m trying to get out walking most days. A few weeks back I managed just over half a mile and was a wreck. This weekend just gone I managed a mile at almost normal walking pace while holding a conversation. Progress is progress but I’m still a way off being able to take the dogs out for 3-4 mile walks.

    I hope the fatigue eases but compared to some of the possible side effects I could be suffering from I’ll take fatigue every day.

  • 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.