4 days out from my operation and I feel good this morning. Considering my sides are black and blue and it pinches when I move. I can see improvements every day.
I had a low moment yesterday after walking a few hundred metres and then feeling really uncomfortable. Katie reminded me I was only taking half of the pain meds I’ve been prescribed and that I need to listen to my body and don’t try any heroics.
I can almost sit up in bed without having to pull on my carefully constructed TRX strap for assistance and will feel a lot better when I can do that and not wake up fully when turning into my sides.
One thing that hurts that I wasn’t expecting is my right forearm. This is really sore inside and whenever I twist my wrist. Someone had a real struggle with getting an arterial line in and I have a good bruise from my wrist to the middle of my forearm and also inside my elbow.
I’m not sure what the actual problem was but it result in them abandoning it and putting in a central line in my carotid artery instead.
I’m still sleeping a lot but am moving around often and generally trying to get well. Next immunotherapy is in 2 weeks, CT scan in 3 weeks and follow up on the operation in 3 weeks.
After an eventful night on our ward, I won’t go into details for the sake of privacy but will say all the staff on SSS last night were amazing and so patient. Sadly the noise added to the existing discomfort of catheters, cannulas, central lines, oxygen tubes and DVT bags that inflated on my calves every minute.
So no sleep then.
Eventually they started to disconnect various devices and I could then see why I felt so battered and bruised.
I only felt pain when I sat up. This makes going from lying to seated quite uncomfortable.
Katie took a photo when I got home, of the main wounds that are stitched internally and glued externally. Warning : a little gruesome. But I understand why I’m sore.
Main woundKeyhole wounds.
Considering the major surgery I’ve had this is amazing. Hopefully I’ll keep the pain managed over the coming days.
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.
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.
7am on Friday is when I need to arrive at hospital for my kidney removal (Radical Nephrectomy). I have a covid test at 4.10 this afternoon and from then on I have to completely isolate.
There’ll be another test first thing Friday and only of that’s also clear will the operation go ahead.
I had to abandon a scheduled lunch out at the last minute yesterday as it occurred to me that it probably wasn’t sensible to go and sit in a crowded cafe for over an hour. I’m paranoid something will happen to stop the operation.
I’m also worried to the point of constant nausea about the operation itself. I should be blasé as I’ve had lots of operations, including two keyhole surgeries. So I know roughly what to expect.
I’m also being seen by the best Renal Surgeon in the South of England, who’s done literally 1000’s of these.
So I shouldn’t be scared…but I am. I’ve convinced myself something will happen “on the table”. I have so many risk factors counting against me that I believed something is likely to go wrong. Maybe I’ve watched too many episodes of ER or Greys Anatomy.
It probably didn’t help that I actually watched an operation the same as mine on YouTube a few days ago. Morbidly fascinating, I wanted to stop, but couldn’t.
I’ve taken these next few days off work, as there’s no way I could concentrate on anything important. A few hours on the motorbike today helped but I’m now clock watching until I have to leave for my test later.
After being told at the end of 2021 I was going to have my bad kidney removed, I finally have a date for my operation.
It’s taken longer than planned to get here though, due to my breathlessness. I’ve had to have a raft of tests and appointments before given the go ahead from the surgeon and anaesthetist.
Hardly a glowing review when the letter from the chest specialist states “He’s as good as he’s going to get”.
So Friday May 6th is the date. If all goes well it will be a robotic keyhole surgery and I’ll be home on the Saturday and start a 4 week road to recovery.
Sadly it means I’m not going to be fit for my motorbike trip in June so will try and plan something in September.
I’m now reading and watching as much as I can about the surgery, the risks, the recovery. I don’t mind admitting that I’m quite scared. Even though I’ve had surgeries before, this seems to be the biggest, and with most risk. This one is the most enlightening and by the surgeon who will be doing my operation.
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.
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. 😁👌
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.
🏥Today, The Earl and Countess of Wessex visited Frimley Park Hospital @FrimleyHealth in Surrey to recognise #InternationalNursesDay. 🧑⚕️Their Royal Highnesses spoke to nurses who've been recognised by their peers for their exceptional work during the pandemic. pic.twitter.com/tWCRt0SxKk
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.
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)
I’ve had the best part of a year doing little activity and suffering chronic fatigue but have eaten as normal.
I knew I was putting on weight but didn’t care, “Might as well enjoy myself” was my thoughts if I’m not going to be around for long.
However with recent acceptance comes acknowledging that I cannot continue waiting without exercising. So I stepped on the scales for the first time in 2021…and wish I hadn’t.
So..
I’m still in no state to return to bootcamp multiple times a week but walking cycling and gently increasing movement is key.
If anyone wants to join / help / motivate me you’re more that welcome. A bonus is that losing some weight can only help with the fatigue and tiredness too, win win.
