Haematologist meeting August 2025.

Wednesday 27th August

Five days following my Kidney surgery PCNL I have an appointment with my haematologist. Post surgery my urologist mentioned that the haematologist requested a biopsy of a lymph node, but he refused as the PCNL was a substantial procedure and could delay my recovery. He explained that the lymph node was very deep and to get to it would take a “lot of digging” plus I would have not agreed to the procedure without prior discussion with the haematologist.

After discussing this with the urologist he felt that this node may have swollen due to the pre operation UTIs. In fairness the urologist preformed this kidney operation to clear the stones and manage further stone developments so he covered his job and now we need answers from the haematologist.

At my last meeting in May the haematologist told me that he needed time to personally review all my CT Scans since 2014 and this appointment is to report his findings.

To explain in better details- my blood test since January have shown my ESR readings as very elevated. Standard ESR readings should range between 0 to 15 mm/hr however mine have shot up to 95 and lowest was in my last blood tests at 31 almost double the maximum level. In blood cancers like lymphoma this is a red flag, the oncology team have not acted on the blood test as they felt that these readings were due to kidney issues and not a relapse- relapse after 8 years in remission is about 5% and the decision was made in February to tackle my kidney issues first so further test would be more accurate. However 5 days after the operation I would be concerned that the lymph nodes are still reactive and swollen due to recovery.

This meeting is the next step to clarification and I will be pushing not for a biopsy but straight to a PET scan. on saying that I had a stent inserted during the operation that will need to be removed in 5 weeks, thankfully the urologist will remove this via a full anaesthetic (as against previous stent removal’s with light sedation). If the haematologist wants to stick strictly to EHA guidelines then he can do the biopsy at the same time. In my view it’s not necessary as the results from a biopsy would still require a PET Scan to progress either way.

Where to start? Maybe the opening comment which is never recommended for a cancer patient or survivor “Your looking well” in so many ways it is a compliment to the urologist as my recovery has been fast from a serious operation 5 days ago and Anita’s mum who has been doing all the cooking

€130 cash only and to be honest a total waste of time- only good part is I am getting a PET Scan within the next 7 weeks and even that took a push. His view is that the kidney stent needs to be removed and urologist assurance that the kidney issues are gone before progressing- hard to believe that I underwent surgery and still have haematologist blaming kidney stones however he used evasion techniques answering questions. One of the only advantages to having 45% hearing from childhood I can read people better by body language. I have another appointment with him following PET scan (or in this guys view another €130 for reading a report) and after that I’ll look for a referral to the haematologist that covered my stem cell transplant. Having no confidence in a medical specialist is not good and this is how I feel about this guy as against the haematologist who guided me through the stem cells process as she was incredible and direct also a very confident person.

So either the surgery to remove the stent next or the PET Scan. I am now waiting since January to get approved for the scan which means nearly 10 months delay.

Oh yes and they lost my discharge urine sample from Sunday why they now want my GP to do as I have not been admitted, and this is atop private hospital FFS. I’d be looking for answers as a consultant about handling any sample – this sample was taken to insure the all infections were clear but “lost” and unable to do another in the hospital when I was there. It’s adds unnecessary stress to what was a difficult situation..

31st August

And a week after the operation and all going well, I have been spoilt by Anita’s Mum who has taken over the kitchen & cooking. My old friend fatigue is back, it feels different to cancer fatigue and more manageable. The point of surgical entry is very neat and very clean just another battle scare. A week with the pain from my lower side is incredible. About 4 to 5 weeks until the stent is removed and although it’s surgery it is not another key hole operation- they will also check the kidney when I’m in surgery. I was advised not to fly until after the stent is removed. It’s like a belly button on my back. The surrounding marks are from the surgical plaster

Now back to packing and getting the house ready for sale, all heavy items are already in our storage container so it’s more packing ornaments etc

And the stent removal date is confirmed 17th of October plus the analysis of the stones they removed