Tag: update

  • All done, and I’m still here

    I arrived promptly at 7am to short stay surgery and was told I was going down “soon” as I was the only one on the renal surgery list.

    Cue lots of forms, questions, tests and a frantic hunt for an XL gown as the one provided was far too small. I didn’t think off the shoulder with a micro skirt was a good look on me. 😁

    Dignity well and truly out of the window as I had to step briefly and draughtily from the bed into the operating room, desperately trying not to moon at the theatre staff.

    I’ve had lots of operations before and am used to getting a pre med, a nice high and then drifting off to sleep. Not today.

    Not sure why but I had to have some sort of line installed into my forearm to measure blood pressure while I was out and this did not want to go in. After at least 4 local anaesthetic injections, the wheeling out of an ultrasound machine and a very unpleasant and painful 20 minutes or so they finally got the line installed. Then someone suggested let’s put him to sleep before proceeding. At last!

    Deep breaths in and out then the fentanyl went in and I was out in a matter of seconds. Obviously I don’t recall anything after that until I started to come round in the recovery room.

    Apparently my operation was further delayed by another couple of hours as they had more problems getting another central line into my carotid artery. Deep and very full arteries apparently.

    The operation then went without issue apparently and it was about 3:30pm when I first started to come around in recovery. Very groggy and very sore on my lower right side, luckily I had an oxycodone pump was in my hand and it was used a lot during the first hour or so. I also have the joys of a catheter, not looking forward to that coming out tomorrow morning 🥺

    I finally got back to the ward at about 6pm to loads of best wishes from friends and family. I had a quick video call with Katie, Rhian and Kira and don’t think I made a lot of sense.

    It’s now almost 7:40, the pain has dulled a lot. they’re very pleased at my rate of filling my “bag” 🥹, I’m glad I’m good at something today 😁

    Still in my gown and very hot, there’s no airflow in here. I’ve also managed a sandwich 🥪

    I’m pretty tired still and glad I bought my sleep buds with me as I think I’ll be trying to get some sleep soon

    The plan is to get me moving in the morning, remove the catheter, central line and all being well go home tomorrow afternoon.

    Thankyou everyone that’s sent me a message, it means a lot to know you all care.

  • T-1 day – this is really happening

    My overnight bag is packed, I’ve read and re-read the short stay surgery guide. Had my “last supper”.

    Nil by mouth from midnight but that’s not going to be an issue as I’ve felt sick all day.

    Alarm set for 6am. Katie’s going to drive me there and drop me off. No visitors allowed on the day surgery ward so I’ll be by myself again. Much like most my medical appointments and hospital visits since my cancer diagnosis.

    I’m not expecting to get much sleep tonight but shouldn’t be a problem as I’ll probably be waiting around tomorrow for a while. An uncomfortable and short NHS bed awaits.

  • Long time, no posts

    I’m still here. No posts since December means one thing, there’s not been much to say.

    Health wise, I’m still waiting for my operation to have my Kidney removed. This has been delayed as they have concerns over the state of my lungs and breathing and how well I’d deal with anaesthetic.

    I was given inhalers over Christmas due to breathlessness via telephone consults with my GP and the surgery team wanted me to see a chest specialist to see what’s actually happening.

    I saw him at the start of March and confirmed I have asthma and just 60% lung capacity. It’s possible its related to the tumours in my lungs but unlikely. It’s also possible I’ve had Covid without realising it and that’s damaged my lungs.

    Either way I have strong steroids by tablet and inhaler until the start of April and then they’ll see if I’m ready for surgery.

    The downside of the delay means it’s unlikely I’ll be able to go on my planned Motorbike trip in June, so that will be 3 years without a trip now. Hopefully I can sort something out for later in the year.

    I still have the monthly Immunotherapy and am happy that I now spend less time there as they’ve increased the rate of infusion so I get it over 30 minutes now, rather than 1 hour previously. The downside is that this makes me feel very tired and headachy for a few hours now. But I’d still rather that than spend any more time in hospital than needed.

    The fatigue is still there and some days are better than others but I can still only manage just over half a day working each day. I’ve added a bit more time each day and I finish work and then sleep for 2-3 hours straight after. I still then sleep 8hrs at night too.

    I had a day in the office today for the first time in over 2 years which was strange. It was a nice change and good to see people again. Felt almost normal.

    The final issue on the health side is weight, which I have to reverse. I spent over a year not caring what I ate as I didn’t expect to be around but now I’m planning for things 2,3 and 4 years away. The fatigue and tiredness make exercise really hard and walking and cycling are the only things I can manage currently. Having an e-bike helps with the hills 😅

    I’m ashamed of where I am now weight wise and know it’s not going to change quickly so I’m giving myself until the end of the year to get back to somewhere reasonable.

    In other news we’ve taken advantage of the crazy second hand car prices in the UK (due to long lead times on most new cars). We’ve said goodbye to the Tesla Model 3 Performance.

    It was a lovely car for the 2 years we had it and it was great having supercar performance (0-60 in 3.2 seconds!) in an ordinary 4 door family saloon. I used to frequently tease drivers of fancy German and Italian cars. But common sense has now prevailed and we’ve changed to a Tesla Model Y. It’s a lot more practical, just as clever and cheap to run but also much easier to get in and out of as we’re not sitting inches off the floor any more 😂

    We were able to change cars and even get some money back because of the high trade in on the Model 3.

    It’s not as fast as the Model 3 so my drivers licence should be a bit safer now.

  • 2021, A year in review

    Treatment day again so that’s means I’ve got some time to kill while I wait for the infusion to complete.

    If I look back to a year ago, it’s fair to say things were grim, not just for me but for everyone. Covid had us all locked down again and unable to see friends and loved ones. Christmas was going to be different.

    As we’re facing a rise in the new Omicron variant right now it’s possible we could still face a Christmas lockdown. If not Christmas then almost certainly New Year. But everyone seems to have been looking forward to the festivities with more vigour this year. Certainly earlier. But also as if we all appreciate what we missed last year.

    We’re the same, our tree went up a week or so earlier than normal, before Rhians birthday, which is a first. There’s been no “bah humbug” from anyone. we’re hoping we can still see friends and family over Christmas.

    A year ago I’d been on immunotherapy for 3 months but had no clue if it was working. The thought of an early January scan was looming large. Little did we know just how well it WAS working. The first two scans showed massive reduction and the next two showed continued stability.

    Obviously, Cancer has loomed large in 2021. But it moved from a place of dying with cancer to living with cancer. Learning to adapt, go with the flow. Accept new limitations on fitness and fatigue. Getting back to work and keeping my brain active and making myself useful again.

    I won’t lie, I’ve had highs and lows, some are here in this blog for prosperity. But they’re stabilising. I’m making plans again.

    As if cancer wasn’t enough, Katie has had her own health challenges this year that it’s fair to say have tested her to the limit but she’s remained strong, resolute and always positive. She’s now getting the right treatment and is adapting to her own changes. Getting old sucks, in her head she’s still 21 and fighting against ageing all the time. But throughout everything life has thrown at her she’s remained positive and upbeat. Our rock.

    Katie has found a new love this year. Over 6ft tall and a bit thick. Not a man, a paddle board. I think that’s been her escape and she’s had some amazing days out on it not just on the local canal, but also on the Thames and in the sea. Both Kira and Rhian had got in on the act so we’re a 3 paddle board family now. It’s not for me though.

    Katie’s spent a lot of 2021 huddled over a sewing machine making face masks likes there’s no tomorrow. She’s made no money from this, instead asking everyone to make a donation to Phyllis Tuckwell hospice.

    This has helped raise the total to over £3500 so far for the hospice. Not too late if you still want to donate. 😁👌

    https://www.justgiving.com/fundraising/sd-phyllistuckwell

    Rhian is working hard and seems to enjoy media and comms work still. It’s interesting to see her skills in keeping the world informed about the activities of her health trust on social media. Her highlight for me this year was photobombing an official Royal Family Twitter photo when they had royal visitors. She’s looking forward to being able to travel again and still has an Australian itch to scratch.

    Kira is now well into year 3 of nurse training as has definitely hit her stride. Her current placement in a local Emergency Department is showing her she has got what it takes, she seems to be thoroughly enjoying it. We’re so proud of her making this career choice. She also has new man in her life and seems contented.

    In other areas, 2021 has been a great year for friends. I’ve seen so many baby announcements but I’m particularly pleased our great friends never gave up and we’re finally gifted the daughter they deserved in October.

    Lots of people are now dog owners so that’s been great to watch. We added two more kittens to the family. In a fit of stupor I agreed and before I knew it two male Russian Blue Tabby cross kittens joined us. They made themselves right at home. Scratching, chewing, weeing anywhere they can. It’s lucky they’re cute.

    We no longer send Christmas cards, instead making a donation to Phyllis Tuckwell. We’ve done this for many years now. We use mediums such as email, socials, this blog to send seasons greetings to friends and family. This year, a blog post seems as good as any.

    We’re hoping for a great Christmas and a less stressful 2022. I’m hoping a beach holiday is on the cards as well as a motorbike trip. It’d also be great if we had no more medical conditions to surprise us.

    so I think I speak for all of the Davis family when I say Merry Christmas and a prosperous 2022 to you all.

  • Treatment 15 and some scary news

    Last week was treatment week again, number 15 now. Prior to that on the Tuesday I actually had a face to face oncology appointment. First time since my diagnosis. This is because they had the results of my latest 3 monthly CT scan.

    I admit to being very nervous going there as I was really hoping for more tumour reduction. The news at the last scan that it was just “stable” was what triggered my downward mental spiral in August. Having had some good reduction I saw it as the start of the end. However I think I’ve come a long way since then and know that anything that is not growth is good news.

    I was told that again it is stable with no growth and I was happy with this. I was also told that I was going to be discussed this week at the next MDT (multi disciplinary team) meeting with a view to removing my right kidney, known as a radical nephrectomy. They explained that as I had responded so well that it could be a good option.

    It would remove a big bunch of cancer cells. They made it clear that I would never be “cancer free” but removing it takes away a likely hotspot. Apparently we can function perfectly fine with one kidney.

    I knew this was a possibility after a year of stability but being told I was a step closer made me both nervous and pleased.

    I watched a really interesting Q&A session with one of the leading kidney surgeons in the country, who coincidentally would also be the man operating on me.

    Go and watch it.

    It’s all done with robots, very clever!

    I then got a call yesterday that if I’m happy to proceed then they want to do the operation. No brainer, of course. If you’d asked me what I wanted, this was it but having it confirmed makes it a lot more scary.

    Most likely it will be in early 2022.

    Until then I’m on a diet, still trying to be more active and working towards returning to work full time in the New Year ( I’m still only working half days)

    A big improvement from a year ago.

  • I needed that 👍

    A break from blogging, a break from work, a break from treatment and some airbnbs at my favourite places, Dartmouth and Lulworth Cove.

    I’m still here and trying not to get so down about everything. We’re planning for the future, and have ordered a second new electric vehicle. We’re planning on getting a new sofa and a new bed.

    My biking friends are asking where we’re going on our trip next year and I’m planning on going.

    Treatment again this month and I’m still only managing half days at work but I’ll try and keep the activity up. I’ve also realised my lack of movement has had a significant impact on my weight and waistline so I need to watch what I’m eating if I’m going to be around for a while.

  • “It’s good news”.. so why am I disappointed?

    It’s treatment week.. again. Number 12 this time. 12 in total and 8 on just Nivolumab. As always the anxiety is rising despite the fact that the last treatment gave me virtually no problems at all. Which was a first.

    It’s also been time for another CT scan, last one was in April and I have them every 3 months now. Last week I had the latest one.

    I got my usual, pre-treatment telephone consult yesterday afternoon and they had the results already.

    “It’s good news!” I was told.

    Fluid on lungs virtually disappeared
    Nodes in lungs stable – no growth (still almost disappeared)
    Tumour in Kidney – stable – no growth. Still at 4.3cm

    “How do you feel?”

    “Disappointed” I said.


    Photo courtesy of Matthew Henry

    I knew this was likely to happen. The first two CT scans showed good reduction in tumour size from its original 12cm but thats when immunotherapy is most effective, at the start. After that its job is to stop the cancer getting worse. So in that respect it’s working.

    But I wanted more. I want the damn tumour gone. Knowing it’s there means a constant axe hanging over me. The fact it’s made no difference is really disappointing. I’ve always been told my cancer is incurable so I shouldn’t really be surprised but it’s still hard to accept.

    Well as long as I’m still here and able to type this then I should be happy right?

    In other news I’m in my 4th week back at work after a very long break in April. The fatigue still makes a full day impossible at the moment but I’ve getting a lot done in the time I am working so I’m pleased I’m able to still contribute to the workload.

  • Can I Give You Some Advice?

    If you’ve come here on some search for as much information on your Cancer as possible following a new diagnosis then I fully understand the need to know as much as possible about what’s happening and what is going to happen.

    But if I can offer just ONE piece of advice it’s this. Ignore Google. Do not search for you cancer, or prognosis or symptoms, or any other information on Google. Most of it is terrifying, a LOT of is is outdated. Even data and information from as recent as 2017 is massively out of date due to the rate to research and development into Cancer.

    My first few weeks following diagnosis were horrifying and I was convinced at my diagnosis in Sept 2020 that I would not see that Christmas based purely on old and dated info on Google.

    What you must do instead is reach out to medical professionals, charities (in the UK Cancer Research UK and MacMillan are fantastic, there are loads of others) also look out for support groups, there are lots on Facebook including ones for specific Cancer, eg for me there’s the Kidney Cancer UK Support Group but there are hundreds of others.

    The support groups are great as they are full of people right now going through or have gone through what you are now facing and they will help you put your mind at ease with realistic information, support and help.

    Surround yourself with a support network because it is scary when you’re first diagnosed but take it one day at a time and deal with the here and now.

  • Withdrawal Symptoms

    For about 2 months now I have been slowly reducing my Oxycodone dosage. I was on 30mg slow release twice a day for pain relief but with my ongoing fatigue I wanted to do anything I could to try and reduce this.

    I’ve been increasing general activity with walking, cycling and just keeping myself busy rather than allowing myself to constantly sleep. If I’m physically active I seem to be able to keep going a little longer but as soon as I stop and sit down then its like my body takes it as a sign to rest and wants to shutdown.

    The main cause of fatigue is my Nivolumab monthly immunotherapy treatment but a lot is also coming from the opiates. I’ve not had any pain that I believe is associated to my Kidney cancer for a while now so it seemed logical to reduce the Oxycodone dosage and find out if I still needed it.

    I hadn’t realised quite how dependent on it I had become. I’m not addicted to it and am not showing any signs of addiction but I have had some unpleasant withdrawal symptoms as I’ve slowly reduced the dosage.

    I initially dropped from 30mg to 25mg twice a day for 2 weeks. That went fine so I then dropped from 25 to 20mg twice a day. It’s fair to say that was not so good. I guess because the actual percentage drop was bigger or perhaps my body actually noticed the drop.

    I had a raging headache, felt spaced out and disconnected, I felt even more tired and also nauseous. After a couple of days I went back to 25mg to re-think the plan.

    After another week I felt brave so I dropped my evening dose to 20mg but kept the morning dose at 25mg. This seemed to be more successful.

    I did a bit of research and found a chart that said I should be able to drop 5mg per week from morning then evening doses. So about 12 weeks to come off it completely.

    Long story short I’m now at 10mg in the evening and 15mg in the morning. This is about 8 weeks in to my tapering down process.

    I knew it would be slow but I didn’t release how crappy it would make me feel. The worst bit is more joint and muscle aches that could be a withdrawal symptom or a side effect of the nivolumab. Also, reducing the opiate intake means another immunotherapy side effect is now unfortunately present, an upset stomach. Luckily I already have meds for this and was warned it was the most likely one to get right at the start of treatment but the large dose of opiates had countered that the opposite way.

    I’ve now giving it at least a week in between dosage drops to allow myself to get used to each stage so expect this will take another 5-6 weeks+

    I’m hoping to try again to get back to some work in a few weeks and this transition is a key part of that. The fatigue isn’t going anywhere all the time I’m on the Nivolumab but I should be able to reduce the impact and deal with it a little better.

    The cancer journey is littered with things sent to challenge you and this is just another one of those things.

  • Nine down…

    Treatment number 9 today and it doesn’t get any easier. I spend the day really anxious as I know it’s going to be unpleasant for a day or two afterwards. But it’s working and therefore worth the discomfort.

    Today’s treatment was made worse by them not having my appointment for today but instead had it as tomorrow. They fitted me in but I had to wait 90 minutes for the nivolumab to get made up. Then, for some reason my left arm was not accepting the drip very fast and it took another 90 minutes to take the infusion that should only take 60 minutes. I was shattered when I got home.

    My most recent scan has showed further reduction in the kidney tumour since January of on average 1cm on each side so it’s now approx 4.3cm on the shortest side and 5cm on the longest. Almost a cube.

    The nodules on the lungs are still stable, so no growth or shrinkage.

    I’m not as excited this time at the news as I’d rather not have a tumour at all and rather not keep taking the immunotherapy every month. Yes it’s reduced in size significantly since the start but the treatment is taking it out of me and there are days when I wonder if it’s worth it.

    I’ve had days where the fatigue is stopping me doing anything at all. I’ll wake up, be awake for an hour or so then sleep for the rest of the day. That’s not a great existence.

    I can’t work and I feel guilty doing anything that’s not work. I’m paranoid someone will see me walking the dogs or trying to tidy the garage or riding my motorbike and report me. They won’t obviously see me sleeping for hours on end afterwards though.

    So I have a mental as well as a physical battle. And I’ve just been signed off from work again for the foreseeable future.