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’ve been reminded a few times now that while the CT results are great and show massive improvements. I still have Kidney cancer. Albeit much smaller 😁
I’m writing this more for my own benefit than anything and just to keep me grounded but I still have aches in my chest when I breath deeply, I’m still very tired all the time and I still ache pretty much everywhere. I still take a high dose of pain medication every day just to get by and occasionally even more to deal with small amounts of breakthrough pain.
None of this suddenly stops just because I’ve had a great response to the immunotherapy. It will still take time to recover and improve. This is evident by the fact I’ve not really had the energy to get out for any walks in the last couple of weeks so when I went for a short walk on Tuesday I was suprised how hard it was.
I went for a slightly longer walk today and if I’m honest it nearly finished me. 1.5 miles, that was all, and all flat too but my energy levels, fitness levels and lung capacity have reduced drastically.
It will be a long and slow road to try and get back to pre-cancer diagnosis levels of fitness, if thats even possible. My mind is willing but the body is sadly lagging.
Before I get there there’s the small matter of whether I can get a Covid vaccine as not much is known how it reacts with immunotherapy. I’m in the “clinically vulnerable” group so should be eligible.
Also the not too insignificant matter of a potential kidney removal. Yikes!
But to finish on a positive note, the news I got in September when I was first diagnosed was devastating and never did we think the tumours could shrink so much in such a short space of time. Could they even disappear completely? For good? Is that a wish too far?
I was told at the start that my cancer was incurable and would be something I live with for the rest of my life. I hope that the coming months shows me what that might look like.
