Left to #WatchWaitWorry

Join our Left to #WatchWaitWorry campaign and help us to improve the support offered to patients on Watch and Wait.

Join our Left to #WatchWaitWorry campaign and help us to improve the support offered to patients on Watch and Wait.

How can you get involved?

  1. Send a letter to your elected representative asking them to consider our recommendations to improve the Watch and Watch period. All you need to do is fill in your name, email address and postcode. It’s that simple! Send a letter to your elected representative here.
  2. Read and share the stories from patients supporting the campaign on social media, using the hashtag #WatchWaitWorry. You can read our patient stories here.
  3. Share your ‘Watchie’ in support of CLL patients on Watch and Wait. Take a picture of yourself with your wristwatch and upload it to social media with the hashtags #Watchie and #WatchWaitWorry 
  4. Tell us why you’re grateful for your CNS! Don’t have one? Tell us why you’d like one or leave a message for a dedicated healthcare professional on our message board here
  5. Download and share our graphics via our resource page! Share them on social media with the hashtag #WatchWaitWorry or send them to your friends and family. Choose your graphics to share here.

What is Watch and Wait?

It is estimated that there are currently around 13,300 Chronic Lymphocytic Leukaemia (CLL) patients living on Watch and Wait, instead of being treated. A process that patients often call ‘watch and worry.’

Watch and Wait (otherwise known as active monitoring) is the process of regularly monitoring CLL over time to see how the cancer progresses. Treatment will only begin once CLL cells are taking up space within the blood, causing a reduction in healthy cells and causing greater symptom burden for the patient.

While there are indicative factors, the length of time a patient is on Watch and Wait before requiring treatment is a significant uncertainty. The average length of time before treatment is 5 to 10 years, but some patients are only on Watch and Wait a short period of time before treatment commences and around a third of patients are never treated.

Why does it need improving?

In 2018, we launched the Watch, Wait, Worry campaign to advocate for chronic lymphocytic leukaemia (CLL) patients on Watch and Wait. Despite our best efforts, the COVID-19 pandemic has amplified existing issues that many CLL patients on Watch and Wait continue to face. There is an evident lack of support and clinical guidance for patients on active monitoring. Additionally, the effects on emotional wellbeing are significant and this will be explored throughout our patient stories.

“The concept of Watch and Wait is flawed! It leaves one anxious and over-concerned about one’s health all the time! Consistent support is not there!” (Liz, 74)

For many patients, there is a substantial emotional and physical burden that comes with Watching and Waiting, or rather, worrying. This is exacerbated by the lack of adequate support and information that many patients on Watch and Wait experience.

“I found my appointments with haematology increasingly frustrating. I rarely saw the same consultant twice and felt my concerns over my fatigue were being dismissed.” (Anton, 53)

 Almost 9 in 10 patients (87%) on Watch and Wait state that they would have liked to have support after diagnosis, but 60% of these patients are not offered any additional support from their hospital. 

Half of patients on Watch and Wait express feeling more concerned or anxious since diagnosis, with 1 in 8 feeling constantly depressed or anxious.

“I started taking anti-depressants during this time [Watch and Wait] and this went some way to helping me to deal with my emotions.” (Anon, 60)

Leukaemia Care is committed to improving the experiences of CLL patients on Watch and Wait and the Left to #WatchWaitWorry campaign is here to ensure Watch and Wait patients feel supported during a potentially worrying and anxious time in their lives.

Keep scrolling to read our patient stories and find out how you can help!

Patient stories

Dany

Dany, now 59, was just 55 when she was experiencing extreme fatigue and night sweats. Dany put it down to long working hours but eventually went to see her GP where she was diagnosed with chronic lymphocytic leukaemia (CLL) and was put onto Watch and Wait. Here, Dany shares her experience of life since.

Dany’s Diagnosis

After experiencing tiredness for a year and night sweats, I went to see the GP. My GP did an initial blood test and then followed up with a further blood test to test more specifically as they saw some markers in white cell count that was a cause for concern.  I was then referred to secondary care and went for more blood tests and a scan.

Once all the blood tests and the scans were completed, I was then given an appointment with a consultant who gave me the results and advised that I had CLL. He told me my condition did not currently warrant any treatment as my levels (while high) were not sufficiently high to warrant treatment as generally, it has a low success rate.  This was quite hard to hear.  Knowing that you have a condition that will not be treated until you reach the appropriate ‘magic’ number seems counter-intuitive.  From everything I know, all other cancers (blood or otherwise), warrant some form of treatment but not CLL.  Of course, logically I understood what I was being told but emotionally, it feels like you are in a dream.  After being seen by the consultant, I was told that I was being referred to the care of my GP again and would need regular blood tests to monitor things.  I have blood tests every 3 months, but I do not receive updates from my GP on how things are looking – I have to check my test results myself to see if there are any changes.  

Life with CLL

When I first received my diagnosis, I carried on working but about a month after being told I had CLL, I was driving to work and just found myself crying.  I had 3 months off work, partly to try and come to terms with everything but also to try and re-assess and think about what I wanted moving forward.  I started taking anti-depressants during this time and this went some way to helping me deal with my emotions.  I stopped taking anti-depressants in 2019. My work hours were not going to change, and I was so tired that I didn’t feel I could sustain this any longer.  I had some savings so decided to resign and reassess what work/life should look like to deal with the tiredness.  I did some volunteer work during this time which allowed me to be out walking and getting plenty of fresh air which helped me.  I resumed working in 2017 but on a part-time basis which works well for me.  I still struggle with tiredness.

Management

I don’t feel that I have had any support really from the healthcare system, primary or secondary care on Watch and Wait. It has really all been down to me to get information and to join groups that allow me to see the latest developments etc.,

It was difficult in the first year of the COVID-19 pandemic to get my 3 monthly blood tests but that has gone back to normal now. I work in primary care so have been able to work from home particularly during the stage when I was shielding.  Overall, my experience as a Watch and Wait patient has not been significantly different over the past couple of years.  It’s still down to me to book my blood tests and review the results.  Whilst I stopped taking anti-depressants in 2019 because I felt that I was able to cope better, the last two years have been challenging and I’m about to discuss resuming a lower dose of anti-depressants with my GP as my mood fluctuates from day to day. 

I think the Watch and Wait period needs to be improved so that patients are not left completely on their own to manage their symptoms, feelings, and ongoing care.  

What Would I Change About Watch and Wait 

Secondary care should be advising GPs on what to discuss with their patients if you are referred back into their care.  Perhaps secondary care should communicate with patients on a yearly to 18-month basis to get up to date information as treatment options etc., are constantly changing.  I also think that GPs could send out a short text message to patients in their care having regular blood tests with a short update on the results just so that as a patient you know that the results have been reviewed and there is no change to your current status.

I have found a lot of information useful, but I sometimes feel that CLL patients who have received treatment are more prominent in online discourse than those on Watch and Wait. Many of us may never need treatment which is great on the one hand but on the other is just an ongoing grind.  More representation in the media from patients in my age group who are still on Watch and Wait and how they are dealing with everyday life would be great.

Margaret

Margaret Miller was 62 years old when she was diagnosed with chronic lymphocytic leukaemia (CLL). Now 70, she reveals the stress of being recognised as a clinically extremely vulnerable (CEV) leukaemia patient during the pandemic, and how CLL patients are often the ‘forgotten cohort.’ 

Pre-Diagnosis

We have a holiday home in France in a very rural setting where we spent quite long periods of time. In early 2014 I had persistent pain in my side so saw the local doctor. This was in a village 9 miles away with 2 doctors for a dispersed community. The doctor was actually Belgian. He couldn’t find anything obvious so arranged for a blood test and ultrasound scans. This was Thursday, I had the blood test Friday and ultrasounds Saturday. After the ultrasounds, I walked out with the various scans and the radiologist’s results to give to the doctor and then keep. Monday morning the doctor rang me to say he wanted to speak to me and within a couple of hours I was in his office where he told me my blood results showed what he believed was CLL (LLC in French). My first question was, will I die? He explained that I would probably have a reasonable length of life and die of something else. He then arranged a further blood test to confirm the diagnosis which was sent off to Lyon. I contacted my doctor in Worcester and emailed my results.

Diagnosis

I returned to Worcester where I repeated the blood test and was referred to haematology. The diagnosis was confirmed, and I was handed a Macmillan Cancer booklet on CLL. I was told to get another blood test in 6 months to see how the disease was progressing, avoid infections and to seek medical help sooner rather than later if I did get an illness. I also needed to get vaccinated for pneumonia, hepatitis and to get the flu jab each winter. 6 months later I was back at haematology and as my white cell count hadn’t doubled and I didn’t have any major symptoms, so they discharged me to the care of my GP and 6 monthly blood tests which I requested at the appropriate time.

When I was first diagnosed it was a shock and I really didn’t know how to process it. I felt fine and had to remind myself I had cancer. I gradually told friends and family who were shocked but sympathetic. My mum was in her 80s, my dad had died 20 years ago of cancer and my sister has multiple sclerosis (MS). I decided that to say I had leukaemia would panic mum too much, so I told her I had lymphocytosis. I still refer to my funny blood if I have to explain anything to her.

Management

In 2018 I had a call from the surgery to say haematology wanted to see me and I learnt that they wanted to check my symptoms as my white count had gone over 50. Symptoms were still minor so I was discharged again and told that they would only want to see me if my numbers went over 100 or my symptoms worsened. I was told the numbers could go up, down or stabilise. I was now on 3 monthly blood tests which I request and ask for a printout each time.

My husband found it difficult to understand why I wasn’t offered treatment, but I had been told by the consultant that it was best left well alone until it was needed which could be never.

I had suffered from a small patch of scaly skin on my neck for a few years. Eventually, by chance, I mentioned it to a doctor who was interested in dermatology. She thought it was Bowen’s disease. This is a skin cancer that normally isn’t a great risk but can turn nasty. I later found that CLL patients have a higher risk of skin cancer. After several months of wait, the cancer was removed by a surgeon. Since then, I have had tiny patches of the Bowen’s disease around the original site which appear, and I treat with a chemotherapy cream around once a year as it erupts.

The COVID-19 Pandemic 

And so, life has continued with the blood tests and my numbers are now considered stable. What has changed my perception of CLL is covid. As the pandemic started to creep into our lives, I was concerned about getting the virus but didn’t really understand the risk. I had a friend with myeloma who had been having chemotherapy through the winter of 2019/20. Sometime during March, she picked up the virus whilst going to the hospital for treatment and she died in April. That was dreadful.

Throughout the pandemic, I have largely shielded. Leukaemia Care started sending out more information and advice. I joined Facebook and then the Leukaemia Care page and CLL support group. I began to listen carefully to the advice. Through Leukaemia Care, I learned that I needed to register as clinically extremely vulnerable which I did online but needed the surgery to register me too. On my first enquiry, they were awaiting instructions. The second time they had set up a team to work through the patient list. The third time I was given a telephone appointment with a doctor. He said that because I wasn’t on treatment, I wasn’t eligible. I sent an email to the Leukaemia Care advocacy team to ask for advice and I was provided with a letter of explanation and CEV eligibility. This I sent with a covering letter to my doctor and 10 days later I received a text from the local council to say I had been identified as CEV. This was followed by an NHS letter and guidance sometime later.

Recognition as Immune-Compromised

The next hurdle was getting recognised as immune-compromised for the third jab. I was armed with information from Leukaemia Care’s webinars and from taking part in a study on CLL patients and the covid vaccines. I didn’t receive an invitation for the third jab, so I wrote to my doctor without a response. I rang the surgery and spoke to a locum who said she would speak to my doctor. A couple of days later I received a text from NHS saying I was identified as eligible for the third jab and to contact my doctor. However, following this, I later received a text from the locum that said I wasn’t eligible for the third jab. The following day I received the NHS letter confirming that I was eligible for the jab. Eventually, I did get my jab, but it was 6 months after my second.

I took part in the NHS antibody study for cancer patients after the second and third jabs where no antibodies were detected. The upside of this was that my doctor sent me a text saying that as my antibody tests were coming back as negative, I should contact my specialist for advice. I wrote to her to explain I didn’t have a specialist and needed a doctor to refer me to do that. She wrote to haematology and the advice was to get the booster jab 91 days after my third and if I had symptoms of COVID-19 to get a PCR test quickly and then inform them if it was positive for monoclonal antibody treatment. This has been superseded by the NHS system of sending out priority PCR kits that trigger antiviral or monoclonal antibody treatment within a 5-day window. Like a number of CLL patients, that hasn’t happened, and I had to go to the fallback system of ordering a standard kit through 119. This is added stress given that, even insisting that I am a priority patient, the 5-day window may be missed as I know has happened to at least 1 CLL patient.

The Forgotten Cohort

So, as many of us, and many of the ‘coal face’ NHS staff recognise, the

pandemic has highlighted the lack of joined-up thinking and gaps in the top-down dissemination of information and guidance. Through Leukaemia Care we have been better informed than many health workers. I have always trusted that my health care professionals knew better than me and have accepted their word. I have never had to be so proactive in my health care. I think many patients on watch and wait have been left to the mercy of chance. Unless you have spent time and effort to keep informed through Leukaemia Care’s information, Leukaemia Care’s Facebook groups, webinars etc., then you are at the mercy of how informed your GP is or if you have the luxury of a CNS. I encourage all fellow CLLers to keep fighting your corner. I have heard some say that they have become too stressed and give up trying to get the care they are entitled to. I feel fine and I don’t look ill, and this can be a barrier. The health risk landscape for CLL has changed and we need to shout it out loud.

As I came to the end of writing this, I came across an article from April 2020 about Professor Chris Fegan, consultant haematologist at Cardiff University and an L.C. webinar contributor. He considers CLL patients as a “neglected cohort” who are given little support and experience high levels of anxiety. He considers that, as many of us may never need treatment, these patients would be better served by knowing this and removing the uncertainty and anxiety that goes with a diagnosis. I also think the neglect has been starkly revealed as the pandemic progressed and the blood cancer charities have had to fight to get the care and support, we need at this time.

Meet more people who are currently living on Watch and Wait here.

To learn more about the Left to #WatchWaitWorry campaign, read our campaign report here.

If you have any further questions about our Left to #WatchWaitWorry campaign then you can contact our Campaigns team. They are available Monday to Friday from 9:00am – 5:00pm via email on campaigns@leukaemiacare.org.uk.