Second Oncologist meeting
As I am now past the first two years of remission I now only need to see my Oncologist twice a year. Last meeting was in February and next should have been on the 20th of August but I got a call on Mondy asking if I could meet him on Thursday 13th.. They even had a blood test appointment ready for me on Tuesday..
Blood test was by appointment only, the new world of Covid 19. I’m not bitching here but my last blood test cost €65 the exact same tests now cost €80 – nearly a 20% increase in 6 months. But yes had the files taken and as normal had to wait a little after the test to make sure the vain was sealed. I am on aspirin since 2014 so we need to be careful with cuts etc and that includes blood test. I think it was in 2014 when I had gone for a test and walked out only to find a trail of blood behind me as I opened the car. Such a small needle can be so dangerous. But that never happened again.
Anyway as always a little nervous about this one. I’ll explain the reason for the Oncologist calling me in, in a while. But as against previous appointments I had to wait in the car to be called in, no more sitting waiting in the waiting room, now its waiting in the car.
Let me explain the situation with the early call up. The oncologist is the person who placed me in medical isolation in April 2020. He allowed me to work from home but under no circumstance could I enter the warehouse. He had passed these instructions to my GP and the GP must follow the consultants instructions. It is recognised throughout the Lymphoma medical world that anyone with a history of Stage 2 or 3 Lymphoma is at risk of Covid 19 due to the aggressive levels of chemotherapy used. Stage 4 Lymphoma is high risk within 5 years. Stage 4 Multiple Lymphoma is very high risk. Stage 4 Lymphoma following a stem cell transplant within 3 years is extreme risk and up to 5 years very high risk. So my Stem Cell Transplant was 3 years ago in July but I am only in remission 2 1\2 years and that means that I am at the extremely level. Added to that my 6 year history of chemotherapy and hemiplegic migraine attacks places me into the danger list. Never saw that one coming.
Unfortunately a side effect of all the treatment is the destruction of my immune system , before Covid I was careful – anyone coughing in a room I was in I would leave straight away. But Covid changed that, I was instantly in danger. It is still uncertain if I had Covid 19 in April, doctors believe I had, it felt like a bad flu but nothing like the people on the TV in ICU. Added to this if you did have Covid 19 it can come back. Last measured my immune system was at 40% which was 40% better than 3 months prior but it was still 60% down.
So I commenced this article in my Car waiting for his secretary to phone me. And I started thinking
Yes it’s a dangerous thing our minds. I have been asked to write another article on mental health and I will over the next few months. But what a year so far, I really thought 2020 would be a great year but this is a Tarantino year. It seemed to have commenced okay but by April our world changed. Anita was diagnosed with Vin Cancer and underwent surgery, I was medically isolated and working from home. Then in May the reoccurrence of the hemiplegic attacks. But I have covered everything about that in previous articles. Ireland has yet to enter Phase 4 of lifting restrictions- this phase would potentially offer me more freedom and possible allow me to re enter the workplace as against working from home. So to prepare for what should have commenced on the 4th I got to see my GP. She was not happy but came up with restrictions if I returned however she fell short on issuing a return to work place cert and told me that the company would have to agree to restrictions, which they won’t. Best guess is that this is why the appointment with the oncologist has been changed
And here we go.. First Diagnosed 14/2/2014, Chemo & Radiotherapy- remission 2016, relapsed March 2017 Massive levels of Chemo & Stem cell transplant- remission March 2018… and
Let’s start with the blood results.. ESR An erythrocyte sedimentation rate (ESR) is a type of blood test that measures how quickly erythrocytes (red bloodcells) settle at the bottom of a test tube that contains a blood sample. Normally, red blood cells settle relatively slowly. A faster-than-normal rate may indicate inflammation in the body. Normal ESR would be 0 to 12. Mine has averaged about 15. However it peaked over 3 years ago to 35.5 which was seen as high. My blood test on Tuesday had an ESR of 45.5.
Other issues include abnormally low red cell counts – actually all the important counts were with low or high with the exception of my white cell count.
Basically my body is fighting something possible a viral infection (which is a serious concern with Covid about) temporal arthritic (which is was cleared on a few weeks ago) or lymphoma. ESR is not considered by any means as an indicator but more that further investigation is needed. The haemoglobin levels were also abnormally low. A low haemoglobin count can be associated with a disease or condition that causes your body to have too few red blood cells. This can occur if: Your body produces fewer red blood cells than usual. Your body destroys red blood cells faster than they can be produced. Basically it’s like I have massive blood loss.
Next step is a CT NTAP Computed Tomography of Neck Thorax, Abdomen and Pelvis. CT NTAP scans to check for relapse
Wednesday 19th August 2020
CT-NTAP day. I don’t really mind these scans, the Oncologist had organised this fast. One of my concerns since last week was that he had commenced copying the Haematologist in Dublin on corresponded – this was one of the lead guys in my Stem Cell Transplant in 2017. 2 Hours to drink 2 litre of an orange coloured drink that taste weird
The build up to this scan has been unnerving. I have tried to distract myself as much as humanly possible not to think about it.
I don’t mind the majority of scans as their importance outweighs any discomfort but this scan has all the ingredients of a possible relapse.
To relapse would place me into a very different situation. I have battled Stage 4 Lymphoma twice and won, it’s now over 3 years since I have had chemotherapy and the slightest mention of the possibility of further treatment worries me.
Battling any form of cancer is difficult to say the least but with CoronaVirus active it creates a different atmosphere and substantial unneeded dangers.
Here are a couple of facts specifically relating to Covid19, advance chemotherapy and stem cell transplants:
- A person 3 to 5 years clear from a Stem Cell Transplant has a 3 times greater chance of death if they get Covid 19
- A person 1 to 3 years clear from a Stem Cell Transplant has a 6 times greater chance of death if they get Covid 19 and have a 3 time greater chance of getting Covid 19
- A person undergoing a Stem cell transplant and or within 100 days of the transplant are in extreme danger
I fall into the top one here but the oncologist warned me that these are guidelines. Its just over 3 years since my SCT and my immune system is at about 40%. Concern about the flu like attack in April and the belief that this may have been a form of Covid remain but a full attack now could cause serious health issues or as my oncologist nicely said “Death”.
We have gone through nearly 5 months of social distancing with over 4 months isolation. As you all know isolation is a hard call in itself but we have managed this but where does it end ? We can’t stay locked up forever.
What we are looking at here are risk factors but the reality is that they are very real and very dangerous
Fighting off negativity is another battle. For some reason our minds are wired this way. By nature I am an extremely realistic and positive person but every now and again negativity attacks.
Cancer patients will understand this better than most. Even when clear, the concern of relapse remains, normally just prior to test and scans. I know a lot of cancer victims and even the hardest, most aggressively positive people get worried prior to a possible relapse scan and any form of scan. Right now with Covid been active with so many medical people from specialist to carers that the fact that I am going into a hospital even increases the concern.
It will take about two days to get the report over to my Oncologist but he has placed an urgent report request on this scan so its possible I may have the results tomorrow. There are considerable awareness guidelines in place here, and they seem to be working. The only person to be within 3 feet of me was the nurse that attached a catheter into my arm for the IV.
What I can’t get out of my mind is the fact that my Oncologist couldn’t look me in the eye at our last meeting, this was very unusual. It only happened when he was briefing me on my failed blood test and organising this CT-NTAP, the rest of the meeting was okay. I rely on body language as I have impaired hearing, even with hearing aids active I have a strong way to read physical reactions, eyes, hands and posture can paint pictures. Everything told me that he was concerned but trying to play it down. I have know this guy six years and I am well used to reading him, he wouldn’t make a great poker player. My training in psychology helps here as well. The good part for me is that the Oncologist knows that I read people, he knows I am trained in psychology and therefore tries to work around this which makes it worse. And yes I am smiling under my mask.
That night Wednesday 19 August we got hit by Storm Ellen. 11pm the electrics went out, swiftly followed by our 3 mobile network. I was up most of the night as the winds were reaching 100 Kilometres plus. Thankfully no damage to the house but the gardens were trashed. Electrics came back on briefly at 10am but went again till about 4pm Thursday Mobiles came back at 9pm. So why go into this ? Because at 9:30pm my mobile messaged missed calls. Mostly work related except 1. That was my oncologist. I’d missed him and all the message said was “I’ll call you tomorrow”
Friday 21st August 2020
And the CT NTAP is clear, the lymph nodes are all normal I am now officially 2 1/2 years clear.
The blood issues will be dealt with by haematology as they are most likely not cancer related.
I am still smiling under the mask.
My heart was in my mouth reading this blog! Thank u God u r ok 🙏 I can t imagine the relief it must b for u and Anita. Best wishes 2 both of u. Take care and keep safe 👍🤗💖
I know Miriam- from meeting oncologist till results felt like a year, really concerned as the blood test was bad (waiting for another test now to compare ) but scan was clear
Hope you and the kids are well. I’m still isolated but when this is eased back we have to meet up…
One of my friends sent me a message saying it’s like a horror/thriller 😱