Eileen

Eileen, now 73 years old, was diagnosed with chronic lymphocytic leukaemia (CLL) at 67 years old after a routine blood test. Watch and Wait is not a name Eileen chooses to call active monitoring, but rather refer to it as ‘Watch and Live.’ Read more about Eileen by clicking on her name.

Diagnosis

Prior to my diagnosis, I didn’t have any of the common signs and symptoms of leukaemia. I went to my GP for a routine blood test, where they picked up the fact something wasn’t quite right and I saw a local consultant within a couple of weeks. 

I was diagnosed with chronic lymphocytic leukaemia (CLL) and subsequently placed on Watch and Wait.

I took it upon myself to see a consultant who specialises in this particular leukaemia subtype – if I were to need treatment, I wanted to give myself the chance of getting the best care. The consultant recommended I should have pneumonia and hub vaccine, something I feel wouldn’t have been recommended or requested by my local haemotologist or GP if I had not sought advice from a specialist.  

COVID-19 and vaccinations

Through my own diagnosis, and being on Watch and Wait, I feel I have managed my own condition, vaccinations, which I’ve had to fight for every step of the way. 

I recently had to contact my GP for repeat vaccines, as it was five years since my last pneumonia vaccine. However, they would only do this following a letter from the specialist consultant. I thought this was remarkable, given that GP’s have access to the Government Green Book, which provides advice for re-vaccination for CLL patients. 

I also had to instigate the conversation between the GP and I by contacting them about the Shingrex vaccine. The nurse announced I was the first patient to have it, which I remarked that it should most definitely be flagged up for those patients that aren’t aware of this. She responded, “That might be an idea!”.

With the Government’s recent stance announcing that they will scrap self-isolation, I have been left feeling more vulnerable. The promise of antivirals for people with blood cancer when first announced felt like a light at the end of the tunnel, lessening anxieties and offering some kind of passport to normality – however, this was short-lived. I have learnt it is not a given we will get these, but dependent on the clinician’s own interpretation. Even though these medications should be administered within five days of a positive test to avoid becoming seriously ill, I’ve heard of patients being refused because they weren’t ill enough. Some patients were even refused such medication because they were on watch and wait, despite being immunosuppressed. 

When the booster vaccine was announced it coincided with my six-monthly telephone consultations. I told the consultant my third primary had been wrongly recorded and needed a letter in order to get my booster because of this, but she clearly wasn’t aware of the regime! I had to contact the specialist consultant at The Christie who immediately sent an electronic letter, enabling me to get the booster.

I think GPs should better inform themselves on clinical management regarding their CLL patient, especially on the topic of routine vaccines and so on. 

Watch and Wait

I am directly under a local haematologist, and at this present time have six-monthly blood tests – which have remained stable. Since COVID these have been telephone consultations. Thankfully I have a consultant at The Christie who I can contact should I have any concerns as well as the CLL specialist. 

Despite my concerns with vaccinations and COVID, I am very much the glass is half full kind of person. I don’t like to use the term ‘watch and wait,’ I prefer ‘watch and live.’ With that being said, the pandemic has been a time of uncertainty and at times, a lonely place. 

To combat this, during the pandemic I took up some art and continued yoga at home, which made me keep quite a positive outlook. However, there have been days when I’ve felt angry and anxious, locking myself away save for occasional visits to family, who were being very careful. I thankfully am not needing any treatment presently. 

 

Acute Promyelocytic Leukaemia (APL)

Acute promyelocytic leukaemia (APL) is a blood cancer, which affects the myeloid cells, which include red blood cells, platelets and some white blood cells

Read More