In this episode we cover the first 24 hours following my diagnosis.

Transcript

Last time I explained how I discover that I have Chronic lymphatic leukaemia, and left you with this question:

Who do you tell that you have CLL, and when should you tell them. 

The one thing I know, with absolutely certainty, is that everyone will have a different answer to this question. 

I know for some people they will scream it from the roof tops, or in modern terms post about it on their Social media, well this is not me, for one thing I don’t do social media. 

I am quiet, generally keep myself to myself, and keep my personal life private and in general is not for public broadcast. (Well, actual I guess this series may disprove that last one, at least in part).  

Before I go on, let me be clear this question has no wrong answer. What is right for one person won’t be correct for someone else.

The people who shout about things, use this as part of their coping method, and this can be both be cleansing for them and also help them cope with uncomfortable discussions later on.

After all, It can be very difficult to find the words to start the conversation if someone does not know about your condition and once they do know their attitude to you is like to change. 

I can certainly confirm that writing this podcast has been very healing for me, and ii is both helping me to understand what is happening, and to come to terms with it.

For me it is the writing which helps more than the sharing, but as I said everyone is different. If you or someone you know is struggling to work through something writing a personal journal can help to process and understand what is happening. Always remember that there is no need to share the journal or even get it perfect just try writing about whatever is on your mind can help you focus and process things.

For the people who choose not to broadcast their condition, this is also fine, just as long as they are comfortable with what is happening in their own mind and not using this as an excuse to stick their head in the sand and ignore what is happening.

Again this is their way of coping, and they choose not to have the discussions because they are not be ready to have it, or it could be they just don’t want everyone knowing their private information. 

As I said, people’s attitude to you may change once they know, and this can cause unwanted anxiety or awkward situations, which may be best avoided. 

Having said all of this, the one thing I would very strongly recommend is to choose a trusted advisor to join you in your journey. 

This should be someone you feel comfortable talking about your condition and how you fell.

You may choose a partner, trusted friend or professional councillor it does not really matter who, but it is important to have this support and to be able to discuss your situation safely and openly when you need to. Ideally I would recommend someone who can be a claim sounding board and advisor and if possible someone who can act as another pair of eyes and ears when they are needed, as at times there will be a lot to understand and you may not be in the best place to absorb everything as it is being explained to you. 

I decided very quick, that I had a few people I wanted to tell, or needed to tell. These were mainly direct family and a few close friends and colleagues. 

After these people, I decided if it should come up that would also be fine, and I would be happy to discuss it but I saw no need to broadcast my condition further. Although, should it come up or I needed to tell someone else l would more than happy to share or tell other people. I just personally saw no need to broadcast it.

Please remember, just because it may be difficult or uncomfortable, it does not mean you should be afraid to discuss anything. As long as you do it in the correct way you should always be able to discuss anything, although the method and words used may vary depending who you are talking too. 

Ok, let’s get back to my story, the first person I told, was my wife. I am blessed with a generally well ground and sensible wife, who can also read me like a book. There is no way I could have hidden it from her even if I want too, and it would have been totally the wrong thing to do anyway. 

I did realise that any delay in telling her would have only made it harder,  and of cause I needed my trusted advisor and for me she was the obvious choice. 

So how did I tell her. If you remember from last time I was at home alone when I received the news that I have CLL. While fair from ideal, this did give me the advantage of a few hours between learning of my diagnosis, and her returning home, this gave me the time I needed to go into shock, pick myself up, and be able to share the little I knew in a more claim and consider manner.  Even if inside I was still a mess. 

I knew that I needed to keep thing together while I was telling her, and I can assure you that was a lot easy to say than do. 

Fortunately, this was one of the few times on my journey I would need to be strong for her. After this we would be there support each other as we each needed each other.

So how did I did I actually tell her?

When she arrived home, I let her get sorted, made another cup of tea. This time for both of us, giving me a good reason to speed time with her without making it feel strange or staged.

You might think that this sounded cool, claim and collected, I can assure you this was far from the case and I was like a swan, claim on the surface and frantic underneath. 

We sat down, drunk our cup of tea and after she had told me about her morning, I went on to explained to her about the phone call from my doctor.

While I did my best to fill in as much detail as I could, adding in the additional information I had found out from the internet, I am sure I missed things out but I did the best I could at the time and it appeared to suffice.

On the outside she seamed to take it in, and we started to plan the next steps, but inside, I know she was struggling.

I am sure she had many question that neither of us could answer, and many of these were the same ones as me. After all,  there was a lot to process and neither of us had really absorb everything. 

I know that in the following days, my wife talked things through with more people than me, but that was fine with me. I knew she needed to process what was going on, and needed the prospective from an outsiders point of view. I am sure this helped her to cope and helped her process what was happening to me, while allowing her to protecting me by going over the same things.

The one thing that it is important to remember, the people we choose to share personal and private information with can’t alway keep things to themselves for may reasons. 

That does not mean they don’t respect our privacy, or don’t care about us. While we need to allow them the freedom they require to discuss it further with other people, if we don’t want it our condition to be public knowledge we should tell them. At the end of the day, if we trust them to know, we also need to trust them wherever it takes them. 

Ok, so we both knew, but what next. 

Well the short answer was I need to wait to talk to  a consultant haematologist, and if you remember from last time this was likely to take several weeks.

Being left with lots of questions, and very few answers was not a great place to be. 

Unfortunately, the delay was outside of my control. While I can make some choices and control some of what is happening, there are other things which are just totally outside of my control. The difficulty is working out what we can control and accepting or managing what we can’t.

The fear of the unknown is one of our most basic instincts, and can significantly fuel anxiety and fear. Unfortunately this is wired into the human dna and while we can learn to cope or manage this we can never get away from it. 

I was fortunate, and had access to private medical insurance, so was able to obtain a more detailed explanation via a telephone consultation with a consult haematologist with in hours, this gave me the opportunity to manage  the wait for the referral. 

One phone call to the health insurance company and by the end of the day I had a phone call back from a consult who had reviewed my test results and was able to fill in some of the gaps and reassure me of the next steps and possible time line for my journey. I can honestly say without this it would have been a lot harder to wait or st least I would have been calling my doctor to try and get answers she could not necessarily provide.

When I got the call back, the consultant was great, he went through some initial checks and then explain things again,  reassuring me that I was in the very early stages of the condition. 

He went on to confirm other than being carful I did not need to worry at this stage.  I could have a reasonable life and did not need to worry in the short term. In his opinion given my results it was quite possible that it would be several years before I need treatment, and in the meantime I could live a relatively normal life if I am careful.

Basically This is what is called “watch, wait, and see”, but more on that later.

Looking back, I don’t think the consultant said much more than my doctor. I was just in a better position to ask intelligent questions and absorb what I was being told.  Although he did share and give me the actual results. What a difference a few hours can make.

I would say doing all of this by telephone and in the middle of a pandemic was very difficult. I am sure it made it harder for me. Although I do understand it was the only realistic option given the pandemic.