In this episode I cover the first few days following my initial diagnosis.
Transcript
You have been diagnosed with a life changing medical condition, don’t know what is coming next, and the world is in the mists of a pandemic for a highly infectious respiratory virus with no known treatment or vaccine. So what do you do next, and how would you feel?
It would have been so easy to say “that I’m not going out, and won’t meeting anyone”, changing my life totally. That is not the way to go, both my meant health and physical well being.
So one of my first decisions was quite simple, this is my life and while the CLL may mean I need to change what I do or how I do it, I was not going to let it rule my life. I guess what I am trying to say is that as far as possible I will manage my condition, and as far as possible I will have a normal life.
The reality was that the Covid-19 Pandemic was just another factor of life which needed to be managed, but apart from some added precautions this was not really any different to everyone else at the time. Although how I managed them would need to change at least in part.
One of the difficult things to decide is when and who to share your condition with, and while this is a very personal decision it is something which I needed to decide quickly.
Basically there are two extreme approach’s, tell everyone and it it out and get the support from everyone or only tell the bear minimum of people., of cause most of us will end up somewhere in the middle between the two extremes.
Up to this point I have just shared my diagnosis with my wife., who next and when?
The reality is as you tell people their attitude will change towards you even if this is not a concussion decision. I did feel I needed to share my condition with a few key people and their initially reactions were quite different., but everyone was supportive.
My brother initial reaction was quite interesting. When I told him his first question was, “it is chronic and not acute?” At the time, this seamed a bit of an odd question to me, in my mind these two are very similar but in reality they are used to signify totally different stages of a condition.
A chronic condition is one which you can normally live with and iyour condition is manageable and of no immediate concern. While an acute condition is of immediate medical concern and requires prompt action.
Those of you paying attention last time will have remembered that I used the phase “watch wait and see”. This is a commonly used technique with chronic conditions and may be used in combination with some from of treatment.
So why did my brother ask this question? Simply put while not a medical doctor he spends his working life in a hospital around cancer patients, I believe he wanted some reassurance what stage the condition was at. Unfortunately due to the pandemic travel restrictions there was no way he could practically get to see me as he was living in Australia.
The next person to tell was my employer. They were very supportive and gave me whatever time I needed and allowed me to work through everything at my own pace.
Next, came the extended family. They took in in their stride and naturally shared their best wishes and offered any support they could give.
Finally came the housekeeping, insurance companies etc. who I had a duty to inform.
Most of these went as you would expect, answer a few standard question and they updated their records. The travel insurance company was the most interesting one here, everything followed the standard format with a few questions. They confirmed I would be covered for any pre-booked trips but declined to provide ongoing blanket cover for any new trips. I believe that this was more about them wanting to protect themselves from the unknown caused by the pandemic more than anything else. Fortunately at the time I had no plans to book any trips so this was not much of an issue and could be reviewed when I was next ready to book a new trip.
Other than this I just opted to tell a couple of close friends and for me I felt that this was sufficient at that time.
To be honest everyone I have told has been very supportive and in general the response I got was probably about what you could expect and they did respect my privacy and not gossip about it.
One of the issues I did have is that because of covid 19 restrictions, I basically had to tell everyone by telephone, this is far from ideal but the only option open to me. I personally feel a face to face discussion is always better if you can cope with it and it is practical but I so understand so
E people actually find this very difficult.
Please don’t forget as per last time when I share things with my wife, having shared with someone close to you or needing to know you have to accept they may need to discuss things with someone else, and in these cases you should accept that this may happen and take the same view as I did with my wife last time.
Apart from the process of telling people what else happened in the first few weeks. Well if I am honest not a lot. Most of the time was spent waiting to meet or discuss things with the consultant l from the haematology team.
That is not to say that there was some more research done on what the condition meant, but this was limited by choice until I could speak to the consultant.
We also started as a family to discuss and replan what happens next in our lives, as the weeks went on I can say my focus was changing to be more focused on family and less focused on work but this was a gradual process.