I received my initial diagnosis that I have Chronic lymphocytic leukaemia in March 2020, this episode explains how I was diagnoised and what was happening at the time.

Transcript

Let me start by welcoming everyone to my journey, and share my wish that you find it both enjoyable and informative.

But before I begin, let me set the sense. 

I received my initial diagnosis that I have Chronic lymphocytic leukaemia in March 2020. 

At the time the world was just starting the long fight against COVID 19, a highly contagious variant of the the SARS virus. (SARS is short for severe acute respiratory syndrome, and is caused by the SARS coronavirus). It was common for people who caught the virus to be hospitalised with serve pneumonia like symptoms, and unfortunately many people who caught Covid 19 in the early days did not survive, and those who did recover in many cases were left with life impacting changes following their recovery. 

Now, each country had its own approach to the emerging pandemic, with them ranging from the total lockdown of their population with considerable restrictions on movement and interactions between households, right through to what could almost be considered a life as normal approach.

The UK had started with what could be considered a life as normal approach, and it was the hope that this would achieve a heard immunity, however it was around the time of my initial diagnose that the approach was being changed.

Initally the government, starting with 6 weeks lockdown which included very restrictive measures to try and stop the fast rising number of cases, and hospitalisation cause by them.

The rules during this initial period were simple,  only key workers in areas of health care and distribution for essential items, were allowed to go to work. Everyone else was only allowed to leave their homes once a day for exercise or to obtain essential shopping such as food or medical supplies.

While after the initial lockdown period most of the general population were allowed to then start going interacting in a controlled manner there was still a more restrictive guidance issued for people with a weekend immune system which included some forms of Cancers remain. Here is an extract of a letter that I received from the NHS shortly after my initial diagnosis:

This guidance was specifically for everyone who lived in England who has been identified as, clinically extremely vulnerable, as different parts of the UK had their own rules and guidance:

• you must not leave or be outside of your home, except for limited purposes
• We are advising clinically extremely vulnerable people to stay at home as much as possible, except to go outdoors for exercise or to attend essential health appointments.
• Try to keep ALL contact with others to a minimum and avoid busy areas.
• You are strongly advised to work from home. If you cannot work from home, then you should NOT attend work.
• You should avoid ALL non-essential travel by private or public transport, this includes NOT travelling to work, school or the shops. You should still travel to hospital and GP appointments unless told otherwise by your doctor.
• You are advised NOT to go to the shops. Use online shopping if you can, or ask others to collect and deliver shopping for you
• You are advised NOT to go to a pharmacy.

As you can see, while the guidance did fall short of say you should not leave your home, it is very clear that contact with other people outside of your household should be avoided whenever possible , and in fact interaction by anyone on your immediate household should also be limited when practical.

You may wonder why I explain this, it is to give a background as to what was happening and to explain the already general sense of concern about life in general before I even got my diagnose.

Anyway lets get back to my journey, so how did I discover that I have chronic lymphatic leukaemia.

Well at this time, I was not aware that I had any health issues, and it all started with a routine blood test performed during my annual medical checkup which I attended prior to the UK Covid 19 restrictions coming into place.

From what I understand, this is not uncommon, and can be how a many people who have been diagnosed start their journey with CLL. 

The initial concern was raised from an abnormally high white blood cell count, detected as part of a full blood count. Well, when I say high the readying was about 10500 cells per millilitre of blood, with the normal male range being between 5 and 10 thousand.

The flood blood count is a very common test performed by doctors to check someone’s general state of health, or for that matter as a general diagnosis aid, of cause in my case it was the former and an abnormally was so further investigation was advisable.

The first time that I was aware that anything was a cause for concern (that is outside of the normal results), was when was when I received a phone call from my doctor’s secretarial team to arrange a follow up blood test.

I have to admit that I just made the appointment and did not enquire why it was required. The phone call came when I was focused on work and I just did not really absorb, or query, why the second test was required. If I  am honest, and in hindsight this was probably a sign I was juggle too many things. I guess that comes in part from being a workaholic. 

Anyway, I turned up for the blood test as arranged, and because of the newly introduced covid 19 restriction was asked to wait in the car park until called in for my test. This precaution was not because they thought that I might have CLL it was in place for all face to face medical appointment at that time, the idea was to limit personal interactions to as few as possible and for as shorter time as necessary. The theory being that this would help reduce the risk of possible cross infections.  

The nurse administering my test was running a little late, and was apologetic for keeping me waiting. Apparently, she needed to confirm what bloods were required for my test. (In layman’s terms how much blood and which villes to use). She also commented that it was an unusual test which is why she needed to confirm this information as it was not one that she was regularly required to take. Being focused on work, for a second time I did not really take this in and after the blood required to perform the test had been taken, I just went home to wait for my results.

For completeness and for those of a medical bent, the second blood test was a FACS chronic panel, not that I asked or had it explained to me at the time. 

From what I understand the process up to this point was, that is apart from the precautions as a result of the protection measures for Covid -19 was quite typical, and in fact this is how many people who have been diagnosed with CLL may have been diagnosed. Although  I do suspect many people would have been a bit more engaged in the process and asked more questions than I had.

What was not typical, although again quite similar, is what came next!

A few days after the blood test was taken, I was sitting in my home office working as normal. It was mid morning, the phone rang, and it was my doctor. After the initial hellos she went on to inform me that I have been diagnosed with “CLL”.

I can honestly say that this meant nothing to me as I had not come across this abbreviation prior to this call, and the issue with abbreviations, is that everyone involved in the conversation needs to understand them and use the same abbreviation to mean the same thing. I certainly had not come across CLL at that time.

Now I do fully understand why my doctor opted to open with the discussion using the abbreviation. It certainly sounds less scary than the full name, which she did go and tell me. I suspect it comes from experience, and opening the discussion with words like leukaemia and chronic can cause more issues, and be more scary for the patient.

I should also add that she did apologising for not inviting me into the surgery to discuss things in person, but given current government guidance over COVID 19 it was not possible at that time. 

As I look back on this call, I can only say that I was in a state of shock, and while I did understand what I was being told, I was not really taking it in. I was certainly in no state to ask intelligent questions, other than the obvious ones around what are the next steps, although I suspect this comes from my normal calm and analytical nature more than anything else. 

Being in the house alone, I had no one to discuss the call with, and was left numb, in shock, and disbelief. As the minutes went on following the calI, i was coming up with more questions, then answers. My solution to this was to hit the internet and do some research. Well if I am totally honest, go and make a cup of tea and then hit the internet.

It would be unfair to say that my doctor was at fault for leaving me with these questions, I needed time to process the phone call before my questions really started to form and I was offer the option of a call back should it be required.

Once I had made a drink and taken 20 minutes or so to try and clear my head, I headed off to the NHS web site to see what I could find out. I also took the opportunity to visited some of the uk based cancer support sites to see what they had. (The links to these are on my web site and in the show notes).

This is what I gathered on my initial research: 

• I was diagnosed at a relative young age being in my early 50s, with most people not being diagnosed until well into their 60, or even older. This was not all bad news as in recent years the tests had become more accurate and sensitive allowing for people to be diagnosed younger.
• I had not experienced noticeable symptoms including
  • Night sweets
  • Tiredness 
  • Breathlessness
  • Swelling lymph nodes

My doctor had already confirmed this during our phone call, not that I really took it in and this at least did explain some of the questions I was asked.

• Most people following their diagnosis, do have a long life expectancy, although in the later stages of the condition it is likely to require some modifications to the patients lifestyle. 
• Treatments do exist, but these are normally kept until the condition worsens, and the preference is to avoid medication in the early days instead opting for “Watch, Wait and See”. I will come back to this one later. 

Although, all of this was still scary, and I had been left waiting for an referral with the haematology team for further checks and additional information.  I did at least feel slightly re-assured. 

At the time COVID-19 patients were placing significant demands and pressures on healthcare providers worldwide and the UK was no exception, running beyond capacity, forcing them to make hard decisions around priority of care which resulted in lower priority cases being left longer than normal for referrals or treatment. Unfortunately, this meant I would need wait several months to get to see or talk to a consultant. 

Given everything that was going on, I am sure you can understand what how I was feeling emotionally at this time.

I guess this is a good point to come back to the question I raised in the epilogue. Is chronic lymphocytic Leukaemia a life changing condition?

• As I said in, most definitely, there is no question about it.
• So now comes the difficult bit, on a scale of 1 to 10 how life changing is it

In the epilogue, I left it here, but after that first phone call with my doctor, and my limit research , what do you think my answer was.

Well at that time, after my initial two hours of internet based research, I would have probably said that for me it felt like it was about a 3 or 4, and even following this my view did not really change for some considerable time, at least from my point of view. Don’t misunderstand me I was still very concerned and understood the need to be careful, and in fact very quickly started to make plans to allow for my diagnosis

So why did I come to this conclusion:

• I was diagnosed young, and had the benefit of being diagnosed in the very early stages of the condition. 
• I had no, primary, or secondary symptoms at the time of diagnosis. 
• At the time, it was not noticeably impacting me or my life.  

Was I correct, or was I in denial, I will leave it up to you, but I was certainly happy with my choice at that time, and this did continue unchanged for some time after the initial diagnosis, well at least from my point of view. At the time the way I saw it was that there would be a number of stepped changes which could be managed and coped with but I saw no immediate need to make significant changes . 

Like most people, following my initial diagnosis I had many questions. They did take me some time to formulate as I was definitely in shock, but I guess they could be grouped into one of the following:

• What is CLL
• How bad is my condition 
• What does it mean to me
• What can I do about it
• What happens now
• and of cause, why me

I knew that I was not alone, and most definitely not the first person to go through this. 

One of the best pieces of advice I found early on was to share your journey with a buddy. Someone to support you as required, but not necessarily some with the condition. The idea is they can be there just to support you when you need it and having a second pair of eyes and ears or just someone to discuss things with can be really useful.

Ok, so I think that about covers it and explain how my journey started.