So you have heard me use the phase “Watch, Wait and See” What does this actually mean.

Transcript

Those of you who have been paying attention, will have noticed that I have used the term “watch, wait, and see” a few times and I think it would be worth just explaining what this means, but I get into that let revise the thought I left you with last time.

Follow my first appointment, did it change anything? I can say the short answer is not really.

All the appointments did was confirm my diagnosis and reassure me that in the immediate short term I did not require treatment. That is not to say that I could continue as before, I needed to be careful and protect my self from infections (not really what you want to hear in a world wide pandemic for a highly infectious and protentially serious virus). I do think this made things a bit more real, I guess some the acceptance was starting to set in.

So as I said nothing changed for me but I know some people will have a totally different situation and things would need to change for them sooner rather than later.

So let’s get back to “Watch, Wait and See”, and what does this actually mean. Let’s start by break it down:

Watch: this is a period of routine monitoring and testing to see how a condition is changing overtime. 

Wait: the doctors wish to wait until the condition changes before doing anything.

And See: well basically let’s see how the condition changes before we decide what to do., there is no clinical need to change anything immediately. 

As you can see this is basically what it says, the hard bit for me as the patient is I don’t know how long this phase will go on for, and let’s be fair neither do my doctors. After all everyone is different and how the condition changes over time and how quickly or slowly someone progresses will be unique to them. 

It would be unfair to leave things here, while the doctors can share an educated guess based on someone’s test results and their experience, the truth is that it is just an informed guess, and there is no way that it can be anything else. Although in most cases I do feel this can be a useful guide if nothing else.

So, what does this mean for me with my confirmed diagnosis  for CLL, basically it meant that I have will need to have a routine blood test ever 6 to 12 months monitor the changes and progression in my CLL.After this a plan can then be put in place to start any treatment at the correct time. Although I had no idea how long this stage would last, in my case I was told that they did no expect things to change for 3-5 years and then they would be able to decide on the next steps but even then it may end up with the watch, wait and see continuing.

While this might not sound that bad, and in reality it is not, it does mean that I am left watching and waiting along with the doctors which is not great for the anxiety and makes it difficult to plan for the medium  term. 

The reality is that I am left learning to cope with my condition, and manage my anxiety while waiting for things to develop over time, or at least the next steps to be decided. It is the not knowing how long this will be is the hardest part especially given estimate I have been given and that it could be year always.

So what did the wish to monitor?

Well for me the key indicator being monitored was my white blood cell count, and at least with this knowledge along with the understanding of what will trigger the next review does help but still does not give an indication of the actual time line.

When I was first diagnosed my white blood cell count was only slightly greater than a pregnant woman, something which made me smile but still three times greater than a normal male of my age. I was also told that there was no plans to even consider treating my condition until it reached 3 times the levels confirmed during my first appointment, and even then they may opt not to do anything. 

Now let’s get to some details over the advice I was given to follow during this initial phase of watch, wait and see. Well basically it was very simple and can be summed up as the following:

• Limit contact with people, primarily because of the risk involved with catching Covid 19 but also to reduce the chance of any infections.
• It is import to avoid anyone with an infectious conditions. Which of cause is easier to say then do during at any time let alone in a pandemic. After all it is not like everyone is walking around with signs on to let you know they are infectious is it. Although being serious this is more about avoiding large gatherings and crowds especially in confined spaces.

Let be honest at the time, this guidance was initially the same as the general guidance for the whole of the uk population, with perhaps more emphasis on the don’t meet up with people if you can avoid it for me. However as the rest of the population had the guidance and restrictions reduced it basically remained unchanged for people with suppressed or weekend immune systems until the end of September 2021.

However the underlying medical advice about limiting risk by limiting contact with people carrying infections conditions was not likely to change.