JJ Stent Removal October 25

Follow my PCNL operation in August where a JJ Stent was inserted during surgery

JJ stent insertion is a medical procedure to place a double J-shaped stent, a thin, flexible tube, into the ureter, the tube that carries urine from the kidney to the bladder. The procedure is performed under anaesthesia in an operating theater, where a cystoscope  (a long, thin tube with a camera) is passed through the urethra into the bladder to locate the urethral opening  . A guide wire is then threaded into the kidney, and the JJ stent is advanced over it until it sits in the kidney and bladder, with its ends coiled to keep it in place. X-ray guidance confirms the stent’s correct positioning.  

These are used to expand and protect the ureter, the ureter is only 3mm in diameter, some of the treated stones fragments were this size and basically the stent helped the steady flow between the kidney and bladder. Stones break up better in the bladder, I have seen an ultrasound of my bladder after the PCNL and it looked like an asteroid belt.

I have had a number of stents inserted over the past 30 years all under full anaesthesia however they were all removed when I was awake, not a pleasant experience. The first one was in 1996 and instead of a local anaesthesia the urologist used liquid ice. It was not a painful experience but more embarrassing.. however my new urologist follows a different path and prefers to ensure the patient is unconscious for the procedure, he also wants to extend the scope into the kidney to see how the kidney is functioning and if any further stones have formed.

I have to be honest, stents are uncomfortable & I’ve yet to have one that does not breach my pain threshold. I had discussed this with the urologist prior to the surgery but he advised that it would depend on how much of the stone was left, he made the decision during the procedure that a stent was necessary. I had agreed prior to surgery that if necessary then to go ahead. The problem is that stents can move and this one definitely did. However the pain itself was not as bad as some of the UTIs I’ve had this year. A few months of discomfort is a means to an end.

Also on the point of UTIs. Between January and August I had multiple attacks to be exact 8 serious ones. That’s 1 a month and considering the only gaps were due to antibiotics. But since the operation I’ve not had a single UTI, on that point I had 48 hours of antibiotics injections following surgery.

The expectation on this admission is to manage the kidneys better and we should have a laboratory report on the stones that they removed. This procedure has stopped the PET scan and I have to wait another 4 weeks after the stent is removed before I get the PET SCAN, I have been waiting and pushing for this scan since January 2025. But the oncologist wanted this underlying medical issue sorted before progressing. Right or wrong- in 2014 when I was first diagnosed this was not classed as a major issue all tests for Lymphoma were preformed and they recognised the underlying condition, slightly different in 2016/2017 when I was relapsing – my oncologist referred me to my urologist, the urologist advised that I had about 30 stones in my left kidney and was considering removing the kidney. I commenced a hard flush of the kidney against the urologist knowledge, this is where I triple my water intake- a week later at a pre operation meeting with the urologist he decided to rescan the kidney which was clear with the exception of one stone that was buried deep in the upper corner of the kidney & unlikely to move (this stone is the one that was removed in August 2025 by a different urologist) once the urologist referred me back to my oncologist they progressed further in diagnosing a relapse but at that point we were 3 months delayed due to the stones – I count myself lucky that the cancer was still contained within the lymph node system and now 11 years later I am in the same situation. I will be covering this more in my PET scan post hopefully in about 4 weeks but this scan should have been done in February 2025.

Interesting article by Peter Kay

https://www.mirror.co.uk/3am/celebrity-news/peter-kay-undergoes-emergency-surgery-36032668?utm_source=app

I’d like to see a video of Peter describing this in his normal funny way but no offence I’m glad he is highlighting the procedures

I’m still considering turning all the articles into a book, so I’m trying to stop repeating things during my articles. Yes a book and it will cover my life story. But not today, today is focused on finally getting my kidney sorted and I’m looking forward to the preventative advice. But ultimately this clears the way for the PET Scan

14th October we went sale agreed on our home. The ever present cost of medical care has forced this sale. But this is a difficult one to walk away from as we both love it. Stand and deliver your money or your life Adam & The Ants 1981 – the hidden cost of battling cancer

Now back to the procedure at hand the stent removal day 17th October 2025.

Admission plus another €200 excess charge and up to the urologist ward. Blood test will include my ESR levels. At this point outside of private medical insurance costs are now in excess of €4,500, the price of life. And I’m still in limbo about a relapse.

But I’ve requested the ESR blood test, all part of the self advocate process which is becoming more intense. Learning how to self manage cancer is necessary, I’ve been consistent in doing this so I can fully understand what’s needed to push the boundaries between patients and medical professionals. Over the past year I have found this process is needed not just for myself but for other patients that I have been involved with through these articles.

Just out of surgery and wait for tea and toast. Another successful operation with stent removed and all good. Waiting for urologist to come and update me, but looks like I have to meet specialist about reports on stone prevention.

Home tomorrow to recover and start packing plus looking for the next house. Getting back to renovating next home asap… something I really enjoy. I can cover alarm systems, CCTV. electrics, kitchens building, plumbing, tiling, carpentry (something I’m still working on) ground work and painting. My absolute favourite remains to be gardening and designing gardens. We might be going for a bungalow on an acre site. Winter to renovate inside and autumn for gardening.

But as I’m recovering I switched on the TV to see the news: It’s upsetting to consider I’m trying to plan out my finances for the next year and watch deals been made on buying Tomahawk missiles from US at 1.3million each – a move that seems essential to bring peace what the absolute fuck …the case Ukraine are presenting is that using these missiles will end the war – what by killing 1000’s more innocent people. It’s mad men running countries, I’ve helped a lot of people through serious illness only to switch on the news to see so many lives lost because of leadership poor judgement. We have learned nothing from history and I’d love to see how historians will view the events currently happening.

I have to admit that I’m a firm believer in UFO’s and life on other planets- In recent reports (which could be fake) NASA are believed to have had contact from another planet with a clear message “stay on your own planet “ and seriously I think we can all see why, our approach to making peace is war.. sorry just venting my anger at the world. I stopped watching the News over a year ago but it’s about the only channel watchable in hospital. What I could do with 1.3mlion the cost of one missile and how many more lives I could help through the real world war against Cancer. Walk these so called leaders through hospitals where war victims are recovering and open their eyes, assuming that they’ve not bombed to hospital like in Gaza. And at the same time we see Zelensky spending billions on warfare . And US and EU countries supporting this but at the same time refusing to introduce vital health screening due to the lack of funding. If you want to declare war declare it against a real enemy like Cancer, I would love to get involved in the peace process but slapping the leaders might not go down well.

But in my little corner of the world i am getting closer to completing my role as a patient advocate to the EHA guildeline committee (something that has taken months to work on as a volunteer) this will hopefully change newly diagnosed patient experience for the better. We continue to push our Awareness sites to help others and get a better understanding of self advocacy. Our budget is zero point zero zero and unfortunately that’s a time bomb for the future of our sites, I’ve covered cost for the past 8 years but with the way my finances are going I may need to stop soon, €2000 a year to run them is not something I can continue to do. In 8 years I’ve spent the greater part of €16,000 just keeping these sites active- my reward is knowing how much of an impact we have had on Awareness with over 62,000 readers, we have lost victims and seen some amazing survivors but it’s now time for me to make cuts. This site is up for renewal soon and to be honest we can’t afford it as we have multiple bills hitting us this month and next and of course the continued cost medically – ps I have nothing against the Ukraine or Russia just their leadership. End of rant

Saturday 18th

As always can’t get a nights sleep in hospital, added to normal crap food but just confirmed I’m going home today. Thankfully I can recover fast and nurses happy with my progress. Just waiting for the urologist to discharge me and confirm my ESR levels. Anything south of 15 would be great. ESR has behaved badly this year jumping from 18 to 45 and then 92 in February, dropped to 45 in June and 32 in August, unfortunately this could be from UTIs but with a clear kidney and no UTIs since August we should get a better idea if this was the cause or lymphoma and yes it’s down again to 23 still high but going in the right direction, with lymphoma it tends to stay very high and not fluctuating like this, it could now look like residual effects of the kidney operation .My urologist is first class and no bullshit, in his words today “mission accomplished Ian, your kidney is clear and working great but also stent free from here going forward we’re set to manage and control, it will take about 12 months & most likely changes to your diet along with medication but if we need to go in again I’m happy to do so” I find it frustrating that there is a test called TARC that can be used to detect lymphoma but it’s still not available for use, tarc serum is produced by lymph nodes and unique to them, but it’s down to costs- as CHL is rarer and basically not cost effectivent for use it isn’t used in Ireland but there are some EU countries doing it along with many US states, TARC testing is the future of early diagnosis and shouldn’t be held back because of costs, the use of this test could save health services in treatment costs but that’s part of my mission now. Sorry another rant…