Haematologist meeting May 2025.

Partly an update on my last article and some good news for a change.

Good news first. 26th of March 2025. Anita had her annual check up with her oncologist. It’s now 5 years since her operation to remove VIN Cancer, back in 2020 she had gone to see her doctor over an unexpected rash wouldn’t heal, the rash turned out to be an early form of skin cancer but had spread internally to cause a very rare type of tumour based cancer called VIN. The oncologist felt that the best approach was to remove the tumour and the nearest lymph node via surgery. Following a very successful operation and laboratory tests on the tumour they decided that chemotherapy and radiotherapy were not necessary. 5 years on and Anita is now classed as Cancer clear and discharged by the oncology team. On the 27th she had her annual breast scan which appeared clear. Ladies it’s the best advice we can give – regular smear scans and breast checks are vital to get early detection and personal reassurance. If Anita had failed to get what appeared to be a simple rash check then there could have been a different outcome. So congratulations Anita on beating Stage 3 VIN cancer. 

But back to my previous article. I had a blood and urine test last week. This was a follow up to check my ESR and that the antibiotics for e-coli had worked. My ESR levels were high in Feb at 48, but had escalated in late February to 92. And following treatment for e-coli the ESR dropped to 45, still high as it should be below 15. 

Pre consultancy meeting on 30th of April I had my blood test again. ESR is down to 29, it’s still too high, all White blood cells are abnormal high – so my body is still battling something. So today 6th of May I have prepared a list of questions for the meeting tomorrow. 11 years of battling cancer has taught me to be prepared. This is my first meeting with this consultant, my oncologist wanted a haematologist local to where I live to take over my case. I’m still not happy about this switch, eleven years of building a relationship with my oncologist, he knows everything about me and a hand over at this point feels weird. However fresh eyes hopefully will help. It’s the same old long waiting, my ESR started spiking in January & it’s now May…. I hate the waiting game as it creates unnecessary stress and anxiety. The last CT TAP scan raised a number of red flags, these included multiple swollen lymph nodes, a questionable site in my liver etc etc.

Wednesday 7th of May 2025

Finally a meeting with my newly appointed haematologist. This is a private appointment at a cost of €200. One of my network connections on LinkedIn recently posted about costs titled “Stand and deliver your money or your life” and if Phil is reading this I still have Adam and the Ants constantly singing that song in my head. The clinic is just over an hour from our house so more time to consider my approach.

I have a great advantage because of my role as a patient advocate to the EHA guidelines committee, access to information about procedures and protocols including initial diagnosis and relapse. It’s a clear understanding of exactly what an oncologist and/or haematologist are obliged to do with a patient, I hope to ensure that this information is readily available to everyone. Current guidelines are available on the EHA site, my role on the committee is to highlight issues that are relevant to diagnosis and/or relapse. 

Understanding what your medical team should do is vital, but the length of time between scans and diagnosis range from country to country & they range between hospitals within those countries – this is a considerable part of what I am pushing to change. Proactive approach needs to be fast and not delayed due to overstretched resources. Out of 11 years, in reality I spent less than 3 years in treatment. When I relapsed in 2017 it had taken nearly 6 months of scans, biopsies and other procedures to confirm relapse, most of the 6 months were taken up by waiting times, waiting for scans, admission to hospitals and appointments with consultants. In reality it should have only taken weeks and that is actually all private medical care, if it was public healthcare it may have taken longer. And here I am 5 months since the first red flag and still waiting. But I absolutely know that once the consultant says yes you’ve relapsed then it becomes a massive rush to commence treatment. Going to this meeting I have viewed both the possibility of relapse and continued remission. It is an absolute mind fuck for me, I am generally a very firm believer in positive mental mindset however the span of time since initial red flags to this meeting has opened my mind to negativity. I am writing this in the waiting room for the consultation and yes more waiting.

However the pathology units will not currently allow this test as it has yet to be approved at a national level. For fucks sake, here is a simple blood test that may speed up diagnosis that can’t be used.

Back to the waiting game, this time it will be August before I advance further unless he decides to push ahead with the scan.

And finally called in to the meeting. We spent a considerable amount of time reviewing my 11 years since diagnosed in 2014. Like my oncologist, this gentleman has no faith in ESR for late stage Lymphoma and is actively working to get a new blood diagnostic test to be approved. We covered nearly everything and he answered every question I asked. But he has decided to review all my previous CT Scans in his clinic. That means ordering copies of the scans from the original hospitals on discs and reviewing them himself, I feel that this is to draw greater emphasis on lymph nodes as against other underlying issues – he estimates this will take two months and pending that review he will most likely organise a PET Scan, which is exactly what I wanted but it could take 3 months. Even though I pointed out that the lymph node under my armpit had swollen over the past month he did not perform a physical on me. I asked about other test that might be available like DNA and he felt that he would not be able to diagnose any condition based on DNA and currently DNA testing is under research in America & Canada. It appears that current DNA will only be accepted on tumour based cancers. 

My next appointment is with my urologist in June and he will most likely want a CT scan of my kidneys, my haematologist is currently writing to him to give him an update. 

Basically due to the length of time since remission it is considered extremely unlikely that I would relapse. 

None of this is reassuring as a PET scan is the only scan that can confirm if any cancer cells are present. Current lymph nodes are too deep to “stick a needle in” or basically biopsy. I walked away with a banging headache and convinced that my oncologist should have continued working with me, nothing against this new consultant but he has 11 years of medical records to catch up with. All I know is that we simply can’t afford financially to keep paying for treatment. Fighting cancer is not cheap, bills are constantly hitting us and that’s not taking into consideration travel costs. 

“Stand and deliver! I’m the dandy highwayman you’re too scared to mention.

And his name is not Dandy

Stand and deliver was a phrase used by English highwaymen, or robbers, probably somewhere around the 17th century, say particularly between 1660 and 1714. Horace Walpole said, “One is forced to travel, even at noon, as if one was going to battle.”

Many highwaymen were demobilized soldiers, veterans, who were skilled in the use of weapons. They would rush down on a lone rider or carriage, armed with pistols and swords, stop their prey, and demand, “Stand and deliver!” Stand meant stand still, freeze, don’t run. Deliver meant give me all your valuables.

According to The Guardian in 2002, “The last time a ‘gentleman of the road’ cried ‘Stand and deliver! ‘ on an English highway is thought to have been in 1831 but fighting cancer feels like a highway robbery. The alternative is to let it happen and tell the highwayman to go fuck off. 

This song is really driving me nuts ffs

But so far this year medical treatment has cost me €2,075 and it’s only May. June will see my first meeting with my newly appointed Urologist at a cost of €250, I also suspect that he will order a CT Scan to check my kidneys and this will cost €300 roughly.

So over the past 11 years since initial diagnosis the cost has hit over €30,000 and that’s all our savings gone. The first 3 years I was employed so I could balance cost better but now I’m signed off to an invalidity pension at €230 per week. I sure anyone reading this would say it’s impossible to survive on €230 a week but we do. Might need to sell the house again but we love this house and would find it impossible to get something similar at a lower price.

But this little fellow Alfie is a great comfort and very affectionate. It’s amazing how they sense when things are not right . He shadows both of us when we return from hospital.

The weather has been great over the past week and I get the option to sit outside with little Alfie to contemplate my next few weeks & patiently await contact from the medical teams.