WALDENSTRöM’S AND ME. Part 1
It has almost been two years since I was diagnosed. That is a day I will never forget. Neither will I forget the events that led up to this quite shocking crescendo of a moment. It was as if the orchestra was playing a familiar piece alongside something I had not heard before. All of the instruments started to play wrong notes in different keys and played ad libitum. Then they were all drowned out by an enormous clash of the symbols that signalled the end of the beginning. It eventually left me wondering what had happened, and ask if the ringing in the ears would ever stop.
At least it was starting to make some sense and put things into perspective. That year I had visited the local Accident and Emergency department on average about once a month). Not all visits were courtesy of an ambulance ride but most of them were. Most visits but not all were due to chest pain. One was due to Covid-19 and at least one was because of Atrial Fibrillation. (Also known as AFib). It was taking some time but now the picture was to become clear.
My blood was already being monitored every six months because a few years before, it was discovered that I had a blood condition called Monoclonal Gammopathy of Undetermined Significance (MGUS). In July 2023 one of my heart medications was discontinued as I had been taking it for too long. It had done its job and had kept my heart beating in normal sinus rhythm after I underwent cardioversion therapy due to AFib. Unfortunately, at the time I had Covid-19 but didn’t show symptoms. I was assured that if it was known that I was positive for Covid-19 then my medication would not have been stopped at that particular moment of time. A few days later I began to feel tremors which eventually turned into palpitations. This suggested to my imagination, would be rather like the shakes due to withdrawal symptoms from having stopped that medication so abruptly. As the symptoms of Covid-19 developed then these palpitations became full blown AFib. However, the Consultant Haematologist who was giving me the news said that it was more likely that Covid-19 had made changes to the MGUS, which in turn had made changes to my blood, which had caused my heart to beat irregularly and put me back into AFib.
So what were the changes in my blood that had occurred? I now had a blood cancer. He called it a Non Hodgkin Lymphoma. I didn’t know at the time that there were different kinds. I had heard about Hodgkin’s and Non Hodgkin’s disease. I didn’t know that there were varieties of these diseases. The variety that I had is apparently rare. It is Waldenstroms’ Macroglobulinaemia. (There is only around 4,000 people living with this form of lymphoma in the UK).
So now I had been diagnosed with a low grade non-Hodgkin lymphoma and when I eventually saw my consultant face to face I was given a book explaining the cancer that I now had. In many ways it was rudimentary. It explained the condition in a way that was helpful while I was coming to terms with the diagnosis. However, in order to understand how blood cancers effects patients we should not be content with this level of information. Knowledge is power and that power can help us fight and survive the experience of cancer. I am confident that having the right information at the right time and at a suitable level helps people in their fight towards healing. The information does not have to be straight out of a medical textbook for final year med students, but just not too basic or condescending to the patient.
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It had been so frustrating to be discharged from A and E having spent at least six hours with chest pain and being none the wiser about what had caused the chest pain. All I was told was that I had been right to be cautious and that it was better to be safe than sorry. Which was said to comfort me. In fact, when I called my GP for an appointment then I should not mention the words chest pain. As soon as they hear those words they are reaching for the other line to call for an ambulance. During the early part of the year, before I had Covid-19 I had been pressurized to go to hospital with chest pains and was discharged feeling guilty for not having had a heart attack.
However, when I read the booklet that I was given, in the list of main symptoms I saw that one of the symptoms that sufferers of low-grade non-Hodgkin lymphoma could experience was chest pain. It was top of the list. All of a sudden, other things were beginning to fall into place. Such as a doctor asking me if my legs had always been this white. When I checked to see what he could see, all I could see were the bottom half of my legs looking like ivory. At one point I was prescribed iron as my iron levels were low. I even experienced the pins and needles tingling on my face and hands whilst I was laying on a trolley. I mentioned it to staff. I cannot remember if it was to a doctor to a nurse but I felt as if it was ignored at the time.
Perhaps not. It was more likely that they had noted the symptom and passed the information on in the referral. Being practical, the A and E staff didn’t really know if it was relevant or not. All they could do was pass on the information for the consultant haematologist to consider. I later would find out that this too was a symptom of Waldenstroms. Eventually someone was able to put the pieces together and made sense of it all. For which I am eternally grateful.
It is in the blood.
What’s in mine is not just life.
So now I will fight.
