David’s Watch and Wait story

When David was diagnosed with chronic lymphocytic leukaemia and placed on Watch and Wait, he had no understanding of his diagnosis or prognosis. However, after attending a Leukaemia Care information day, he made a decision that changed his care for the better.

I was diagnosed at Southport Hospital following blood tests that I have annually as a type 1 diabetic.

It was found my white blood count was a little higherthan normal and on the initial visit was told it wasn’t a problem and needed to be compared following a second test six months later. I was not aware at this point what this meant,and it was not explained to me.

Following the second blood test,I was asked to return to the hospital and,after waiting nearly two and a half hours, I enquired when I would be seen due to needing food for my diabetic condition. I was then seen shortly afterwards and told by the consultant that the white blood count had dropped from the previous appointment.He then said I would be treated on a Watch and Wait basis as a chronic lymphocyticleukaemia (CLL) patient.

I was astounded,as no one had given any indication of what my condition was or involved. When I then asked what would happen, he gave me two booklets explaining the situation and condition and gave me a slip for another appointment in six months. I was totally shocked and on my own as my wife was working and it seemed a routine appointment.

I returned to the car and just sat in awe at what I had been told. Without any knowledge of the condition, Ithought,‘how long have I got?’. I had lost a dear friend to leukaemia in her late 40s and could only think about her, the effect it had on her husband,and how Iwasgoing to tell my wife. We had been here before as it was predicted diabetes would kill me within two years back in 2001,but I had researched the condition and determined it was not going to get me yet, and hadtaken action to manage the condition up until now. Could I do anything or would this just overcome me and take over?

That evening I told my wife what had been said and she was both angry by the way it had been managed and worried because of how our friend had been taken. It was therefore over to our friend Google to gain the necessary information.

With limited knowledge,you are in a dangerous place,and with previous knowledge about a friend but without the understanding of differing types of leukaemia, symptoms or treatment,I did not understand that support, respect and medical help could help to manage mylife.

Following the Google search, we found the Leukaemia Care site and that they were running a conference day in Liverpool, which is close to me,and welcomed patients, carers and medical staff. What a relief,and I immediately signed up for the day. A quick reply was received by email and welcomed me to joining the participants on the course. I read more about the condition,and as the day approached,I was concerned regarding my ignorance but excited to link with an organisation that appeared supportive and interested in individuals.

As soon as I arrived,and the usual conference formalities dealt with,it was immediately obvious that there was a wide range of participants attending. It appeared many were medical staff wishing to learn and understand, patients with longer term knowledge of the condition than me,and a number of relatives trying to gain help and understanding of how to support loved ones.

What did I come away with? First the staff from Liverpool Royal Hospital showed knowledge, care and understanding for both dealing with the condition but also the fear it raised in patients. I decided immediately to transfer my care to this hospital and gain from their knowledge and attitude. Secondly,I finally realised I wasn’t going to die in the next few months and had a better understanding of how to live my life with this condition. Thanks to everyone on that day for giving me my life back and confidence to succeed.

I have two daughters who live away and are busy with work and life. It was important for me to discuss the situation face to face as they hadexperiencedas young teenagers the chance of losing their father back in 2001/2002.

I decided to keep it to ourselves until we met up,and after my first appointment at the Royal Hospital, felt far more knowledgeable and able to explain the condition and the time it could take to develop further or remain on Watch and Wait.

I met them separately as one is in London and the other in Manchesterandexplained that I had been diagnosed with a new condition and how it would affect us. How lucky I am that both are mature enough to offer support, ask to be kept informed and assured me they were there for me. The wider world did not need to be informed immediately,but as it became appropriate,we have told friends. We’ve explained how it affects my everyday life,and that we will not change our support for all the activities we are involved with and continue to enjoy their friendship. No,we don’t want sympathy,but understanding when I get tired quickly is appreciated.

Once I’d been to Liverpool Royal, I had a clear view and am happy that I always have a way of contacting someone if questions arise or advice is required about my condition. Weak andworthless were the feelings I had initially,but now I am a warrior andworthy to assist and enjoy life.

There is always someone requiring help and understanding,and I have worked with my local hospice for many years as a driver and fundraiser. Through this work I have met many lovely and positive people,and this hasinfluenced my attitude to supporting others and hopefully can do so through Leukaemia Care. I also receive support from the team at my hospital and feel safe due to their care and support.

I am happy with attending the hospital and am open to the results of Watch and Waitmonitoring as I can enjoy the time between and am determined to use every minute positively. If I allowed negativity to control my activities I would deteriorate quickly I think,and nobody gains from that. I know when I can and can’t do things and find alternatives to ensure I stay positive and am able to monitor my progress.

To others I say enjoy life and share as much as you can with your family and friends in a positive way.

 

 

 

 

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