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Anyone that has experienced Cancer will tell you that the amount of time spent waiting for various procedures, test, medical meetings and results is a battle of its own. The Waiting is where our minds battle negative thoughts and outcomes. With 11 years behind me now in my war, I can honestly say that it’s one of the most difficult things to manage. Following my first Chemotherapy in 2014,ABVD, I had to wait 100 days for a PET Scan – in reality this was set to allow time for the Chemo drugs to finish doing their job and flush out of my system. Looking back it was a difficult time as you don’t know if the cancer is gone or still there. 3.29 months to be exact. And for the relapse it took from November 2016 up to March 2017 – To be fair to the team I could understand part of the delays, waiting for cultivation of bloods, deep biopsies, a trapped Kidney Stone that needed to be cleared and so much more. But that was 6 months in total. But as you will see from the below I am back to the waiting game again but this time it could be another relapse…. This started with a blood test on 22nd of January and I am still awaiting more test 6 weeks later.
Following on from my last article.
My oncologist organised a CT Scan in Galway for me, all procedures like this were originally covered in Cork but since we moved house last year, we have been trying to move all medical procedures closer to home. Cork is a 3 hour drive and covering the return in the same day can be difficult in some tests it is impossible as we get advised not to drive. In some ways we are very lucky to have made a close relationship with a previous neighbour to our previous home in Cork and she has a spare room that we can use (Thank you as always Sharon). But my oncologist wants to have any issues relating to Lymphoma or Cancer managed at a local level. The hospital in Galway is roughly a 1 hour drive. It means that we can travel together to appoints.
The awaited scan was organised fast. My meeting with the oncologist was on 6th of February and I got a call on 10th to attend the scan on the 12th. The scan was “Red flagged” – so it was classed as urgent with a call to my oncologist with the results.
In a lot of ways I was expecting the results last Friday but after making a call to my oncologist the results had not been received by him. I really didn’t want to go through the weekend with this hanging over me. But I did and it was a difficult weekend. Memories of my partial relapse in 2016 kept rising. Still no word on Monday 24th so on Wednesday 26th I called the oncologists office again, this time the lovely secretary confirmed that the results were on her system BUT that the oncologist was away on a weeks holidays and was only expected back on Tuesday 4th of March. I asked the secretary if she could forward the report to me and she explained that she could only do that with authorisation from the oncologist.
Not wanting to spend another week wrecking my head I decided to call my GP who would have been sent a copy of the scan but they had not received a copy yet, so I called the oncologist office again and requested that a copy of the report gets forwarded to my GP which they done straight away.
The mind can be a dangerous place, pushing a positive mental attitude can be an uphill struggle when the unknown looms. And that includes the “What If”. Due to the similar feeling I had in 2016 both physically and mentally plus of course the approach medically it has been a difficult week. But this time it has allowed me time to consider what to do if the lymphoma has returned again. The oncologist last week suggested that we do not discuss a course of action until we know more, But the reality is that if this is another attack then I will be facing Chemotherapy again, most likely another Stem Cell Transplant. In a conversation a few years ago with a close friend she asked me “If you had to would you go through that again ?” My answer was that I felt I would but having the knowledge of exactly what’s involved could be an obstacle for me. Facing the initial R-ICE chemotherapy followed by BEAM and the struggle thereafter to regain strength and beat fatigue is not something I want to think too much about yet. Added to this we have the financial element and age. Yes I am now 8 years older (thanks to the treatment) at 54 I knew the odds were not in my favour but now at 62 it would be an incredible challenge . I would also have so many remaining medical issues from 2017 created by the extreme levels of Chemotherapy such as blood pressure that will not help. The financial side is a serious worry. In 2017 I struggled with bills and looking back the cost was something that I could manage as I was convinced that I could regain employment. That net is no longer there for me and basically I know I will struggle to meet the costs associated with any medical intervention, even if I could raise enough funds to cover us the long term effects on my body created by aggressive chemotherapy is not something I would like to experience again. However I will get answers soon and then start to look at options if necessary.
My GP is also on holidays but it is a big practice so an appointment with a second doctor was organised. I have met this lady a number of times before but those meetings were for Anita, we found her to be extremely efficient and straighforward. The appointment was set for 4th of March. One of the nurses attempted to read the report but admitted she was not qualified to explain the content. Most of my scan reports show references to previous reports and without knowledge of those reports I can understand the difficulties. However I did ask some questions that I felt would be answered on the report. The first was relating to my left kidney and the presence of stones, I also asked if the radiologist had noted any obstructions. Yes there are stone present but no obstructions. Then I asked if there were any notations about swollen lymphnodes and that was a yes in multiple locations
If you ever got a kick in the groin then you can just about imagine the impact of this scan results.
It was difficult to grasp “You have cancer” back in 2014 and finding that it was at its most advanced stage Stage 4 A Hodgkin’s Lymphoma was even harder. When I relapsed in 2017 with my oncologist saying “Its back” and the prognoses was terminal Stage 4 Lymphoma, it got me looking at not only possible treatments of which there were very few but also looking at assisted suicide in Switzerland.
Now 11 years since initial diagnoses I can see areas that could seriously destroy the chances of successfully beating Lymphoma. Over the course of 11 years I have had some of the long term effects of high grade Chemotherapy. I also caught Covid in 2020 which pushed back my recovery.
Some of the issues facing me include: Continued Kidney trouble due to Kidney Stones, damage caused to my right lung during ABVD. Diverticulitis which has become a regular issue since 2017, blood pressure which requires medication to control. And naturally our savings are gone, so its difficult to see where I can scrap up about €15000 to cover the next few years.
Chemotherapy needs good healthy kidney and liver function to work at discarding waste medication and dead cancer cells place the kidneys under pressure. If the decision to go with a Stem Cell Transplant then my Diverticulitis will get impacted badly. And not forgetting that I am currently boarder line diabetic, the use of steroids in Chemo could push this back to medically controlled either Type 1 or Type 2.
The last part of this is knowing the war of hell the treatment brings mentally.
The Pros and the Cons are simple: that I have survived 11 years and 8 of those are because of the Stem Cell Transplant. But my options are limited. Ireland does not support assisted suicide, simply it’s not available here. So its treatment or nothing. The nothing really gets me as this is a blood cancer which can effect every vital organ in the body, without treatment the cancer will spread rapidly and the end result would be a painful death. So Assisted suicide would feel like a great option. Of course with that option not available then Suicide is the only other option. But apart from Medical Assisted Suicide I am against self suicide. But that could change and if it does I would add it to my options.
The CT Scan covered a host of issues that included the usual suspects…
AAA
Damaged right lung
Kidney Stones in both left and right
Diverticulosis
Definition
AAA (abdominal aortic aneurysm). Aneurysms occur most often in the portion of the aorta that runs through the abdomen An abdominal aortic aneurysm is also called AAA or triple A. A thoracic aortic aneurysm refers to the part of the aorta that runs through the chest.This was first seen in 2016 but remains unchanged
Damage to right lung. During ABVD Chemotherapy in 2014 the B is Bleomycin the drug damaged my right lung to the point where they had to cease using it. The damaged caused has had a lasting effect on me and the damage appears in all scans. Some chemotherapy drugs can’t be used again as my lungs could stop working
Kidney Stones in both left and right My old friends “renal calculi” Kidney stones (also called renal calculi, nephrolithiasis or urolithiasis) are hard deposits made of minerals and salts that form inside your kidneys first diagnosed in 1992 and no known cure.. At one point we estimated that I was passing about 35 stones every month. The first one was extreme as my body did not recognize the issues. Seriously these little buggers can be extremely painful. They commence by building themselves inside the kidney wall and over time they dislodge from the wall and make their way through the Ureters to the bladder. The movement can cause the stones to reduce in size as basically they are not that solid, by the time they have travelled to the bladder they reduce in mass. But sometime these stones can cut the kidney, Ureters and bladder. Or basically get lodged between the kidney and bladder, in the Ureters which is a small tube running between them. Trapped stones can create UTI’s and the pain from a trapped stone is chronic
Enlarged Lymph Nodes This is where the cancer lives and the early signs are when the nodes appear enlarged, in this scan there appeared to be multiple sites.
UTI A urinary tract infection (UTI) is an infection in any part of the urinary system. The urinary system includes the kidneys, ureters, bladder and urethra. Most infections involve the lower urinary tract
The Doctor’s (GP) meeting
I asked the doctor to allow Anita to come in with me. I always encourage that meetings like these are accompanied by a trusted friend, relative or spouse. In my own case I have less than 45% hearing due to a childhood incident. Even with hearing aids there are things I can miss and after the meeting we tend to discuss everything that was said. In some ways I feel sorry for GP’s attempting to read through the scans, as previously mentioned above the issues are quiet a collection of serious illness and require specialised consultants to dig deeper. But generally I can help by pointing out what consultants are currently dealing with the long term medical list. And of course the intervention of the Oncologist that instructed the scan as soon as he is available. But the idea of this meeting is to get an early indication about the cause of my off the chart blood test especially the ESR. Like any investigation the first step is to ellimate possible issues and strip the findings back. Swollen Lymph nodes can be created by other issues not just Cancer.
During the meeting my Oncologist called my mobile and I explained that I was currently with our GP and he asked to speak with her. They had a lenghty discussion and set out a plan to diagnose my current situation.
The scan as suspected showed multiple kidney stones and inflamation indicating a bad UTI. So a urine test was done and it showed a definite UTI – the doctor prescribed antibiotics to tackle that with a follow up blood test in two weeks. The lymph nodes are swollen in multiple sites but this could be caused by the UTI, clearing the UTI is now critical to determine the reasons for the lymph nodes swelling.
The road ahead
My GP is refering me to a new Urologist as my own consultant has retired. She has also refered me, under agreement with my current Oncologist, to a local Oncologist in Galway. The Urologist needs to settle the long term issues with my kidneys so that any further spikes in blood test would not be masked by the kidneys. However the possibilty of a relapse has not been ruled out. The multiple swollen lymph nodes will need further investigations by Oncology. This will inculde another CT Scan in March.
During writing this article I spotted another writers article in the US. They have a name on this waiting time now called “Scanxiety” – and this is defined as “Scanxiety is that gut-churning, mind-racing fear that hits while waiting for scan results” Try Googling it and you will find multiple articles relating to this term.
So the road ahead for me now will include multiple test and meetings with consultants. Weeks of waiting for an end result. I have had recurring Kidney Stones since 1994 and over the years I elimated many different types of food and drinks to try and prevent them but my urologist concluded in 2004 that he felt that it was just the way my body handled calcium a factor of normal production in the body produces 1 – 50 parts calcium but mine is closer to 1 – 500. The advantage of this is that I have strong bones. I have had multiple medical proceedures over the years but I have yet to find a preventative method.
Our plan as always is to group the necessary consultants into one hospital, by doing this we have the advantage that the consultants can meet easily to discuss my case. But this will be all placed in a private hospital, so the bills will start rolling in fast. My private health insurance will cover a lot I hope, but meetings, scans and blood test are not included. I am not sure yet which consultant will lead this new chapter in my life but best guess would be the urologist. Along with the stones appearing we noted that the prostate was also spotted as somewhat swollen. I have had various test on the prostate over the years and a regular PSA screening, so hopefully the swelling is just down to the UTI.
In conclusion I am in for a long wait again. The first indication that something was off commenced after I had a CDM checkup in mid January, it has already taken 3 months just to get an idea of what needs to be done going forward. It could take another 3 months to get to the bottom of this. My GP is attempting to line up the necessary consultants, these consultants are very busy and trying to get even private appointments with them can be difficult.
I was actually doing a final edit on this article before publishing it and my mobile rang. It was my GP at 6pm Friday afternoon. The urine sample that she had test was also sent for cultivation to our local regional hospital and the lab had just called her. Typical for me it’s not just a UTI infection they found e-coli in the sample. Now e-coli is a known good bacteria but can also create a nasty infection Many strains of e-coli cause mild to bad infections. But some strains, like those that produce Shiga toxin, can cause serious illness, including kidney damage. This strain is resilient to many antibiotics so the doctor has changed my prescription to a soluble antibiotic for 72 hours.
This kind of infection could affect my lymph nodes and cause a reaction and the way to confirm this is to kill the e-coli and then repeat the urine test. The e-coli infection itself could have come from anywhere, like water or food etc. But its just another item that needs to be eliminated to get a clearer view of what is happening with the lymph node system. Within a few minutes of the call I went to the collect the prescription and commence treatment. This little bug can spread to the blood system and that’s when it becomes dangerous but looks like I can kill it first. But yet again more Waiting Time
Hodgkin’s Lymphoma Awareness Ireland 