Watch and wait

Updated 21 Nov 2017

Some people with blood cancer don't need treatment straight away – and some never need it.

'Watch and wait' is a way of monitoring these people with regular check-ups and blood tests. You may also hear it called ‘active surveillance’ or ‘watchful waiting’.

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Watch our animation for a brief introduction to watch and wait:

Why am I not being treated?

Updated 22 Nov 2017

Researchers are constantly looking for ways to improve treatments for blood cancer and have made lots of progress so far, but many of the treatments offered today still cause unwanted side effects that can make you feel unwell. By delaying the start of treatment, it’s possible to avoid these side effects.

Erica out for a walk

You’ll start treatment if and when you need it and you’ll continue to be monitored once your treatment is complete. Research shows that people on watch and wait aren’t any more at risk of their condition getting worse than people receiving active treatment, like chemotherapy. 

Knowing that you have cancer but aren’t being treated straight away can be frightening and confusing, but it’s important to remember that your doctor will only ever recommend watch and wait if they think it’s best for you. You’re not alone and there’s lots of support available to you and those close to you.

More information and supportFact sheet

We also produce a series of downloadable fact sheets for people affected by watch and wait:

  • Download our bite-sized introduction to watch and wait
  • Download our template for recording blood counts 
  • Download our fact sheet for partners, carers, family and friends
  • Download our fact sheet for employers
  • Download our toolkit for GPs and practice nurses

Who can be on watch and wait?

Updated 21 Nov 2017

Watch and wait is usually only an option for people with few or no worrying symptoms, whose quality of life and prognosis won’t be affected by delaying treatment. It’s also only recommended for people with blood cancers or related conditions that are stable and slow-growing (chronic or indolent). 

These include, but are not limited to:

The decision about whether to watch and wait before starting treatment will be based on how you’re doing and not on the cost to the NHS, or any other reason.

About 27,000 people in the UK are currently on watch and wait; around 13% of everyone living with blood cancer. Each year, around 5,000 people are put on watch and wait.

Read Erica'sKate'sTrevor's and Elizabeth's stories to find out about their experiences of watch and wait, or call our Support Line if you’d like to talk to someone about your experience

How long before I need treatment?

Updated 21 Nov 2017

The length of time people spend on watch and wait varies, as conditions will progress at different speeds for different people. Your healthcare team will be able to give you a clearer idea of when you might need to start treatment.

It’s important to know that lots of people have a good quality of life on watch and wait for years before needing treatment – and some never need it.

You can find a list of other support organisations, along with their contact details, here

What are the advantages and disadvantages?

Updated 17 Nov 2017

Before going on watch and wait, you’ll discuss your treatment options with your doctor, and this can be a good time to discuss any concerns or questions you have. It may also help to know what being on watch and wait might mean for you.

Kate walking her dogThe main advantage to being on watch and wait is that you won’t be exposed to the side effects of treatment unless it’s absolutely necessary. It also means that you’re less likely to become resistant to treatments, which could affect your treatment options at a later date.

However, it’s also important to understand that watch and wait can affect some people emotionally. Some patients describe this period of monitoring as ‘watch and worry’ because it can understandably be a very stressful time.  

It’s completely normal to feel anxious between appointments – particularly the week beforehand. If you find that you feel increasingly anxious or upset, speak to your healthcare team about coping strategies or call our Support LineMaggie’s – a national network of drop-in centres providing practical, emotional and social support for anyone affected by cancer or a related condition – is another great place to go for support, while joining a support group can be a good way to get in touch with other people going through the same thing. 

To find out how other people have coped with the emotional impact of watch and wait, read their tips

What are blood counts?

Updated 17 Nov 2017

Blood cancers and related conditions can affect the cells in your bone marrow that produce blood. This can lead to you not having enough healthy cells in your blood, which can make you feel unwell.

A full blood count (FBC) is a blood test that measures the number of cells in your blood. Blood counts are a useful way of monitoring your condition if you’re put on watch and wait, and you may find that your doctor recommends you have an FBC each time you go for a check-up.

If your condition gets worse or you’re receiving treatment, your blood counts may increase or decrease, but if you’re on watch and wait and your condition is stable, you shouldn’t notice much change. Your healthcare team can explain what your FBC results mean for you.

Find out what a 'normal' blood count looks like

Keeping a record of your blood counts

You may want to keep a record of your FBC results so, if you develop symptoms, you know more about what's causing them and how to cope with them. Below are some examples of occasions where it might help to know more about your blood counts.

  • Erica checking her blood counts recorded in her blue folderA low red blood cell count and low levels of haemoglobin (anaemia) can make you feel tired most of the time. Anaemia affects different people in different ways, so you should speak with your doctor to find out whether your symptoms could be a result of it. If they are, you may want to avoid activities that drain your energy, or consider talking to your line manager or HR department about working part-time.
  • If your platelet counts are very low (less than 50 x 109/l), you can bruise or bleed more easily than someone with higher levels. You may want to avoid activities that involve forceful physical contact or risk you getting hurt. You may also wish to speak to your doctor to make sure you’re not taking any unnecessary tablets that could make you more prone to bleeding (for example, some painkillers).
  • If your white blood cell count is low (especially if your neutrophil count – the white blood cells your body uses on a daily basis to fight bacteria and fungi – is less than 1.0 x 109/l), your immune system will struggle to fight infections. This is called neutropenia. If you develop a fever or any other signs of infection and have a low white blood cell count, you should contact your healthcare team or hospital straight away.

If you would like to refer to your blood counts between your appointments, you can ask your doctor for a copy of your test results, or download and fill in our fact sheet: My blood counts

For more information about neutropenia, download or order our booklet: Eating well with neutropenia

What to expect from your appointments

Updated 21 Nov 2017

It’s normal to feel anxious in the months, weeks or days leading up to your next appointment, but knowing what to expect from these check-ups can help. If you do feel upset or worried, there’s plenty of support available to you and those close to you.

Take a look at these top tips for dealing with the emotional impact of watch and wait, or call our Support Line if you’d like to talk to someone in person

Where will I go for my appointments?

Some people will go to a clinic or hospital to see a doctor specialising in blood cancer (a haematologist / haematology consultant) for their appointments, while others will visit their local GP surgery. It’s not unusual for people with chronic lymphocytic leukaemia (CLL) to visit their GP for their appointments, for example. The specialist you see when you’re diagnosed will explain whether you’ll continue to see them or your GP.

How often will I see my doctor?

The length of time between your check-ups will depend on the type of blood cancer or related condition you have and how it is affecting you. If you develop new symptoms or your blood counts change, your doctor may decide to shorten the length of time between your appointments, or recommend that you start treatment.       

You can use the table below as a rough guide, but you should speak to your doctor to find out exactly how often your check-ups will be.

Type of blood cancer or related conditionTypical length of time between appointments
Chronic lymphocytic leukaemia (CLL)You’ll be seen at least twice within the first year, although some people will be seen every three months. After this, if your condition remains stable, your consultant may decide to reduce your visits to once a year.
Hairy cell leukaemia (HCL)People on watch and wait for HCL are usually seen every three to 12 months.
Large granular lymphocytic leukaemia (LGLL)Usually the same as for CLL.
Low-grade non-Hodgkin lymphoma (low-grade NHL)People on watch and wait for low-grade NHL are typically seen every three to four months.
Asymptomatic (or 'smouldering') myelomaPeople on watch and wait for asymptomatic myeloma are usually seen every three months.
Myelodysplastic syndromes (MDS)Some people with MDS only need monitoring once a year, while others visit their doctor every few weeks. Your doctor will base their recommendation on your symptoms and blood counts.
Myeloproliferative neoplasms (MPN)People on watch and wait for MPN are typically seen every three to six months.
Monoclonal gammopathy of undetermined significance (MGUS)You’ll be seen every six to 12 months if you're on watch and wait for MGUS and your paraprotein levels are low. Your appointments will be more often if these levels are higher.

What will happen at my appointments?

At each appointment your consultant or GP will check to see if you’ve developed any new symptoms and run some tests. Below is a more detailed description of what you can expect, depending on the type of blood cancer or related condition that’s being monitored. 

Chronic lymphocytic leukaemia (CLL)

If you’re put on watch and wait for CLL, at each appointment your doctor will check for new symptoms, such as swellings on your lymph nodes, liver or spleen. They’ll also run a full blood count to check the number of cells in your blood, test your kidney and liver function and may carry out other routine blood tests.

Hairy cell leukaemia (HCL)

If you’re diagnosed with HCL but haven’t experienced any troublesome symptoms and your blood counts aren’t too low, your doctor may recommend a watch and wait approach. Your check-ups will be very similar to those for CLL (see above).

Large granular lymphocytic leukaemia (LGLL)

About half of all patients diagnosed with LGLL won’t need treatment straight away, and are instead monitored with regular appointments. These will involve the same checks as for CLL (see above). 

Low-grade non-Hodgkin lymphoma (low-grade NHL)

There are lots of types of low-grade NHL, but the most common is follicular lymphoma. If you’re put on watch and wait for this, your check-ups will be very similar to those for CLL (see above).

Your doctor may also want to perform or repeat a CT scan of your chest, stomach and pelvis within the first two to three years that you’re on watch and wait, especially if you have new symptoms. After that, if your condition remains stable, you’ll have these scans less often.

If you’re put on watch and wait for another form of low-grade NHL, your doctor will be able to tell you more about what to expect at each appointment.

Myelodysplastic syndromes (MDS)

Like low-grade NHL, there are different types of MDS. If you’re put on watch and wait for one of these syndromes, at your appointments your doctor will run a full blood count and check for new symptoms, such as shortness of breath (a symptom of a low red blood cell count) or persistent infections (often the result of a low neutrophil count).

Myeloproliferative neoplasms (MPN)

Like MDS, there are several different types of MPN. These include polycythaemia (PV)essential thrombocythaemia (ET) and myelofibrosis (MF). If you’re put on watch and wait for one of these conditions, your doctor will check your full blood count and check for new symptoms, such as a swollen spleen, at regular appointments.

Monoclonal gammopathy of unknown significance (MGUS) or asymptomatic (or 'smouldering') myeloma

If you're on watch and wait for MGUS or asymptomatic myeloma, at each appointment your doctor will check for signs or symptoms that suggest your condition might be progressing or developing into myeloma. This usually involves tests to check your full blood count, measure the amount of calcium in your blood, detect whether there are any paraproteins or free light chains in your blood, and to see how well your kidneys are working.    

Getting the most out of your appointments

If possible, it’s a good idea to bring someone with you (like a partner, family member, friend or carer), so they can write things down while you chat to the doctor, or ask questions you might not think of. Appointments can sometimes be stressful and overwhelming and often the support of someone you know can help.

Don’t worry if there isn’t anyone who can come with you, as there’s often a nurse who can sit with you and offer you support while you see the doctor.

You may also find it helpful to bring a notebook with you so you can jot down notes. Between your appointments, you could use this notebook to write down any new symptoms you experience, medication you’re taking or questions you have, so you have this information to hand when you see your doctor.

If you'd like somewhere to write these things down, you can download or order our booklet: My diary

Questions to ask your GP or consultant

You might find it helpful to print out this list of questions and take it with you to your next appointment. You can ask your doctor to write down the answers, so you have them to hand whenever you need them.

  • Why is watch and wait recommended for me?
  • What are my other treatment options at this stage?
  • What tests will I need, and how often will I have them?
  • Where will I need to come for my appointments?
  • What signs and symptoms should I look out for?
  • Who should I contact if I feel unwell or develop new symptoms?
  • Should I take any precautions while I’m on watch and wait (e.g. Do I need the flu jab? Should I avoid the shingles vaccine or other live vaccines? Could my condition affect any unrelated routine operations or procedures I might need)?
  • How will I know if I need to start treatment and what will this involve?
  • What is the best outcome I can hope for?

Getting your results

Some test results may be ready the same day, while others may take a few days or sometimes weeks, but your doctor will tell you when you can expect yours. Usually, you’ll need to wait at least 24 hours for the results to a full blood count (FBC), liver function or urea and electrolyte test – though if your doctor needs to check your blood count urgently, you’ll get your FBC results straight after the test. You might need to wait a week for the results to a serum free light chain test (which tests for free light chains in the blood) or a urine sample to test for free light chains in your urine.

You may find that your doctor arranges for you to have some or all of your tests at your local GP surgery, hospital or clinic a few days before your check-up, so you can then meet with your consultant or GP to discuss the results once they’re ready.

Your doctor will talk you through the results and can answer any questions you have. If the length of time between your appointments is going to change, they will explain the reasons for this. Equally, if they recommend that you need to start treatment, they will discuss your treatment options with you.

If your doctor recommends that you start treatment and you'd like to know more about the choices you might be asked to make, you can download our fact sheet: Treatment decisions

Symptoms to look out for

It’s important to let your doctor know if you notice any change in your symptoms while you’re being monitored. People with different conditions will have different symptoms, and not everyone with the same condition will share the same experience. However, in general, you should keep an eye out for:

  • Kate checking for swellings or lumpspainless, persistent swellings or lumps,
  • unexplained fever,     
  • drenching night sweats,    
  • unexpected weight loss,   
  • frequent infections,
  • unexplained tiredness,   
  • new bruising or bleeding,
  • weakness, or
  • new bone pain.

You can find out more about symptoms for specific conditions by visiting the relevant page for chronic lymphocytic leukaemia (CLL), hairy cell leukaemia (HCL), large granular lymphocytic leukaemia (LGLL), low-grade non-Hodgkin’s lymphoma (low-grade NHL), asymptomatic (or 'smouldering') myeloma, myelodysplastic syndromes (MDS), polycythaemia vera (PV), essential thrombocythaemia (ET), myelofibrosis (MF) and monoclonal gammopathy of undetermined significance (MGUS).

Who to contact if you notice new symptoms 

Because blood cancer and related conditions can affect different people in different ways, the symptoms listed here, and on the relevant conditions pages, should only act as a guide. You should contact your healthcare team, GP, or the hospital or cancer centre you attend straight away if you experience any new symptoms, whether they’re listed here or not, or if you feel increasingly poorly.

Erica's story

Updated 17 Nov 2017

Erica

In 2003, Erica went to see her gynaecologist following a routine operation, and was told that she had chronic lymphocytic leukaemia (CLL). Here, she explains how she coped with the initial shock of that diagnosis, and how she’s slowly come to embrace a ‘new normal’.

Back in 2003, I underwent a minor operation following an abnormal cervical smear test. Over the following weeks, I experienced night sweats, weight loss and felt very anxious and tearful. I felt really rough and had no energy – looking back, I was incredibly fatigued.

In the end, my gynaecologist ran some blood tests. When I went back for my results, he broke the news.

“I’ve never had to tell anybody this before, but you’ve got chronic lymphocytic leukaemia,” he said. “I can’t do any more for you; you should go and see your GP”.

I can’t tell you how I got outside the door – it felt surreal. Due to the way in which my gynaecologist had delivered the news, I wrongly thought that if he could not do anything for me then my days were numbered. My husband John was waiting for me outside; when I saw him, I just burst into tears.

Coming to terms with my diagnosis

Coincidently, my GP had just been on a haematology course; which was helpful but meant she didn’t refer me to a consultant straight away. Eventually, I saw the consultant, who arranged to see me once a year and for me to have quarterly blood tests and monitoring by my GP. If my symptoms worsened, I was told I could reduce the time between my appointments, or – if things got significantly worse – I could start treatment.

Erica with a cup of teaI didn’t ask any questions – partly because I didn’t know what to ask and partly because my mind went blank; the words ‘cancer’ and ‘watch and wait’ were not used. I had an early appointment and was going to head straight into work afterwards; instead, I went home and called my boss, saying, “I’ve got chronic lymphocytic leukaemia; I’m not coming in today”.

I’d been with my employer for 15 years and I’d never had a day off sick. I had quite a lot of responsibility at the time and I’d always been the strong one; the reliable one in the department. But when I was diagnosed, my bosses and I floundered. I didn’t know how to explain my needs, and they didn’t know how to help. I looked well, although I still felt rotten; if I had cancer, why was I not being treated?

For the next five years, I literally worked, did housework and slept. I had to give up being a part-time registrar of marriages, which I’d done since 1995, as I felt faint when travelling in the rush hour and performing marriage ceremonies.

Looking back, my senses were on high alert for years; I felt defined by my leukaemia. Since diagnosis, I’ve not dealt with anxiety or stress well, but I now know myself so much better. I get emotionally drained easily and my fatigue usually sets in about 24 to 48 hours after I’ve overdone it – so there are certain situations I now try to avoid, like going out in the evening. I’m now a lady who lunches and attends matinées!

Diverting the mind

Although a lot of people on watch and wait are diagnosed through routine blood tests, and haven’t developed symptoms yet, a few of us already feel unwell at diagnosis – and while your condition’s being monitored, those symptoms don’t go away. It took me many years to learn how to manage mine, but I found Bloodwise leaflets really helped by giving me practical information.

Erica doing pilates

I find going to the gym and pilates help a lot; at the moment, I do them up to four times a week. I also take a few other classes. One I love is zumba – a fusion of different dance styles; it’s good exercise and great fun. I do these things because I enjoy them and if the CLL develops I want to be as fit as I can to fight it.

Music is my passion and helps too; it stops me obsessing about things. I still feel really anxious when I have blood tests or go for my appointments, but gradually over the past 14 years, I’ve realised that there are things I can do to divert my mind and stop myself obsessing.

I’ve also realised there are ways to give myself more control. I have a blue folder with all my medical information in, for example. I also make sure I’ve written down all the questions I want to ask before I attend medical appointments because otherwise, I know my mind will go blank.

A supportive community

Being part of the Bloodwise Ambassadors scheme (the charity’s representatives) has also been really fantastic. It’s a real honour knowing that I’m giving something back, and the opportunities I’ve had – the events at the House of Commons, for example – have just been overwhelming. The sense of comradeship with Bloodwise and the other ambassadors is wonderful too; it can be a struggle to keep up with all the messages on the Facebook group sometimes!

When I was diagnosed more than a decade ago, all I could see were the negatives; now I believe that I can see the positives – and there are plenty of them. I make the most of each day.

Everyone deals with watch and wait differently, but my advice to others is to just take it steady and be kind to yourself; and if you can get some fresh air and exercise – however little – it will definitely help.

If you’d like to give your employer more information about watch and wait – or your employee has recently been diagnosed with a chronic blood cancer or condition and is not receiving treatment – you can download our quick guide for employers

Kate's story

Updated 17 Nov 2017

Kate

Kate was diagnosed with a form of low-grade non-Hodgkin’s lymphoma (low-grade NHL) in September 2010, and has been on watch and wait ever since. Here, she shares her experience of the emotional and psychological impact of living with blood cancer, but not needing treatment.

When I was diagnosed with small lymphocytic lymphoma in 2010, it was almost a relief. I’d pretty much worked out what the problem was in the month leading up to it.

Kate and son Dan cooking togetherI was already a haematology patient; a few years earlier I’d been diagnosed with a blood condition called immune thrombocytopenic purpura (where the number of platelets in your bloodstream can suddenly drop to dangerously low levels). While I was having one of my regular check-ups in my local haematology clinic, I picked up a leaflet about lymphoma and realised I’d had almost every symptom.

I was a new mum when I first noticed these, so I’d put the tiredness and night sweats I was experiencing down to that. A few years later, my marriage broke up, and I lost a lot of weight; again, I put that down to the stress of the break-up.  

But the second I found a lump on my groin, I realised something wasn’t quite right. I went to see my doctor, who told me to come back in a month if it was still there, and they’d run some tests.

A few weeks later, I rolled over in bed and realised the lump had got a lot bigger. I went back to my doctor, who referred me to see a specialist. The specialist advised that I needed a lymph node biopsy without delay. I saw my haematologist the day before the biopsy and said: “You're looking for lymphoma aren't you?” And she said: “Yes.”

The really difficult part for me was those few weeks where I was waiting for my test results. I thought I could be going straight in for treatment, so it was a relief to discover the lymphoma was slow-growing (indolent) and I’d be put on watch and wait.

The psychological battle

It took about two or three weeks before I really started to struggle with being on watch and wait, and the paranoia set in. I vividly remember doing the lump check every single day. It felt like the lumps in my armpit were getting bigger and I went to see my haematologist in floods of tears, terrified that it was developing.

Kate and her son Dan laughing on the sofaAt that point, I was referred to see a psychologist. I still often don't tell friends or my family how I'm feeling because I don’t want them to worry. Instead, every six weeks, I go and see my psychologist and dump my feelings and worries on her, and that’s been a huge help.

Fatigue is another problem for me; the sofa becomes my best friend when I’m at home. But I don't just attribute this tiredness to the fact that my body is generating cancer cells; I also think you get tired because you're living with this permanent unknown, constantly waiting for something to happen, and the stress is very tiring.

I look too well to have cancer and I’m not ill enough to need treatment, but my consultant has told me I have stage three cancer and I have to handle that somehow. In many respects, people on watch and wait are winning the war and losing the peace. The war being the clinical battle and the peace being the psychological battle.

Coping with anxiety

There are things out there that can help you cope with the mental battle, though. I found a leaflet about the Lymphoma Association support groups about three months after I was diagnosed, walked in one evening, and I've been going ever since. I’m now also a member of the Facebook non-Hodgkin lymphoma support group, as well as being a Bloodwise Ambassador.

I’ve been able to turn something negative into a positive by raising awareness, talking to people, blogging and building up our networks.

A new approach

One of the things I’ve noticed is that my attitude is changing as time goes on. The lesson I've learned, with a lot of psychological support, is that there's no point fighting against your diagnosis. You can't change it and so you have to accept it. By accepting it, to a certain extent, you're rolling with the punches and moving forward, but I would never have got to that position without support.

Kate outside with her dogI try to take something positive from every single day, and I’d say I have a new-found love of life. I don't sweat the small stuff anymore and I've realised that sometimes you can get by without planning everything.

It's also given me a real focus. The people that I've met, the things I've got involved in, the fantastic stories I've heard, the trust that people have shown in me… all of those things are amazing. And they’ve completely changed how I live my life.

Watch our extended video interview with Kate to find out more:

Find out more about Kate’s time on watch and wait by reading her blog: ‘Diary of a “fake” cancer patient’

Trevor's and Elizabeth's story

Updated 22 Nov 2017

Trevor and Elizabeth in their caravan

Just a year after getting the all clear from non-Hodgkin lymphoma (NHL), Trevor was told he had chronic lymphocytic leukaemia (CLL). Here, he and his wife Elizabeth talk about the experience they hoped they’d never have to share – but have chosen to view as positively as possible.

T: To tell our story properly, we need to go back to 1989, when I was diagnosed with non-Hodgkin lymphoma. I discovered a lump on my head, which my doctor thought was probably a blocked gland. He told us to come back if it didn’t go away – which we did, some four months later – and he sent us immediately for a biopsy. We got a phone call from the hospital the same week, preparing us for a letter that was on its way from the Royal Marsden cancer hospital asking us to come in for an urgent appointment. They thought it was blood cancer.

E: It was a shock; we’d only been married ten months and I’d lost my first husband to cancer ten years earlier. We went off to the Royal Marsden to have the usual tests and the consultant said: “We think it’s non-Hodgkin lymphoma, and have to warn you that there’s a chance it’s spread throughout your body.”

Trevor reading his bibleWe’re both Christians, and we went into a church that we’d never been into before, broken-hearted. During the service, the Pastor anointed Trevor with oil, and prayed for his healing. After three weeks of waiting for the results, the hospital called us in and told us the lymphoma was confined to Trevor’s head. It was a miracle! After three weeks of radiotherapy, you could see the lump disappearing. He was seen by a consultant every three months, which gradually became six months, and then yearly – and eventually, after 20 years of monitoring, he was discharged.

T: Our GP continued to take blood tests, and in 2011 – just a year after getting the all clear – we received a phone call from the surgery asking us to come and see her. She referred us back to the Marsden and while in the waiting area, we saw lots of notices on the walls about leukaemia…

E: Taking all of this in, we were called in to see the consultant, Dr. Claire Dearden, who was very re-assuring. “What I’m about to tell you is going to be a shock, but I don’t want you to be worried,” she said. “You have a condition called chronic lymphocytic leukaemia – CLL for short – which is a very mild form of leukaemia. It’s extremely unlikely that you’ll die from it, but we’re going to put you on something called ‘watch and wait’, which means that we’ll monitor you and wait to see if your condition changes. If that happens, we’ll start treatment – but not until then.”

Coming to terms with watch and wait

T: I still can’t fully get my head around it – but, as the years have gone by, it’s become easier to accept… Fortunately, my condition hasn’t got any worse, so I can put it to the back of my mind. But when the six monthly checks come up, I do get anxious and irritable.

Trevor on the miniten courtsE: Trevor’s always been a very gentle and patient person, but all of a sudden he started getting irritated by other drivers when we were out in the car. He did some research, and discovered that it’s not unusual for people with CLL to get more easily upset and irritable. So, rightly or wrongly, we’ve been putting this change in temperament down to his condition to a certain extent. And that’s made it easier to deal with.

T: We just try to enjoy life and continue doing the things we love. We were naturists when I was first diagnosed with blood cancer, and naturism continues to be a big part of our lives. We’ve found it to be a really healthy lifestyle; physically, emotionally and spiritually (I’ve been chaplain at our local club since 1993). People often say that when they go through the club’s gates, they leave all their worries and fears behind.

Sport also plays a big part in my life. I play miniten (like tennis, but on a smaller court) most Thursdays and Sundays at the club – and we both play boules. Exercise is very beneficial and it certainly helps to reduce anxiety.

Sources of support

E: We’re lucky in that Trevor doesn’t need any extra practical or physical support from me at the moment. We do support each other emotionally – so much so that I don’t feel I need any additional practical or emotional support as Trevor’s spouse. But, should I need it in the future, I know I could go to our wonderful GP, Bloodwise and the CLL Support Association.

T: But we also feel it’s important to share what’s happening with our friends and family. So we have support if and when we need it.

Trevor and Elizabeth getting ready to do some gardeningE: Yes, none of this is kept to ourselves. A little while ago, we were due to stay with Trevor’s eldest son, Paul, for his little boy’s baptism. Paul knew that Trevor shouldn’t be among infectious illnesses, so he kindly phoned and told us his son was recovering from chickenpox. I rang Lucy, our clinical nurse specialist at the Marsden, to double check, and she said we were fine to go – but we wouldn’t have known that, had it not been for those phone calls.

T: I think hope is also very important. There are new drugs being researched and coming on the market all the time.  And the fact that we’re both committed Christians has also helped us come to terms with this. We want to stick to this life for as long as possible, but if you believe in an afterlife, it takes away some of the concern and the worry.

E: Thinking that far down the line is something I still find very difficult, but we do have a lot to be thankful for. When we go to the Marsden for Trevor’s six monthly blood tests, we thank God that he’s still stable and enjoying life.

And, of course, we’re also very fortunate that we’re in such close proximity to all of these big London hospitals – the Royal Marsden; Guy’s, King’s College and Moorfields– we’ve got our fingers in all the pies!

If you’re supporting someone on watch and wait, you may want to download our quick guide for partners, carers, family and friends

10 ways to cope with anxiety

Updated 21 Nov 2017

We asked people on watch and wait how they deal with the emotional and psychological impact of delaying treatment while living with blood cancer. Here are some of the things that help them stay positive.

1. Talk to the people you love

If you have the support of family and friends, don’t be afraid to embrace it and share your worries or concerns with those close to you. Sometimes, just spending time with the people you love can make all the difference, as Karen Knighton explains.

“I try to keep a positive attitude and look after myself but I do find it difficult leading up to check-up time,” she reveals. “My family and friends are a great support – they treat me exactly as they did before my diagnosis, which really helps me cope. I am very lucky to have them.”

2. Look for peer support

It’s not just those close to you who can offer valuable support. Some people treat watch and wait as an opportunity to find others who are going through a similar situation.

Adrian Cox, who was diagnosed with chronic lymphocytic leukaemia (CLL), has found great support from people who share his diagnosis. “At 45 years old, it took quite a while for my diagnosis to sink in, but support from my family and people who have CLL have been the best things of all, as we are going through this all together. No one should have to go through this alone.”

3. Make use of support organisations

There are also plenty of support networks you can access through charities and organisations across the UK and beyond. Elaine Cameron found fantastic support at her local Maggie’s centre. “Watch and wait can be stressful, but I found going to Maggie’s really helped me control the anxiety,” she says.

Meanwhile, Jane Lancaster found a meeting of MDS patients in Manchester, “a wonderfully positive experience”.

You can find a list of local support groups and organisations here

4. Appreciate the good things

There’s nothing to say you have to be positive all the time; everyone has their bad days. But some people find that their diagnosis actually helps them appreciate the little things in life, and this positivity can help to keep worries at bay.

Sarah Chapman recommends focusing on the bigger picture to keep a positive frame of mind – “however difficult this may seem, and whatever the setbacks”, she adds. Carol Hojenski Lowrie has a similar outlook.Watch and wait does cast a shadow over your life, but every day I don't need treatment is a real gift, so I try to appreciate each one,” she says.

5. Take each day as it comes

For others, simply focusing on the here and now can stop them worrying too much about the future. “I can’t do anything about yesterday or tomorrow, so I do what I can with this day and I will deal with any eventuality when it comes,” Kit Jones explains.

6. Look after yourself

Another way to stay relaxed and positive is to take care of yourself – both physically and mentally. The value of treating yourself should never be overlooked, as Daisy Evans, now in her 8th year of watch and wait, explains.

“At first it was very hard, with a big shadow hovering above everything I did and the anxiety cropping up whenever it felt like it,” she says. “However, I've learned to cope with it by keeping busy, surrounding myself with amazing people and experiences and just being grateful to still be here. There is still that sick feeling when waiting for the blood test results every three to four months, but having a cuppa and cake on appointment day always helps!”

7. Stay as active as you can

Everyone’s fitness levels vary, but you may find that exercise helps to lower your stress levels. “I work out as much as I can to stay in good shape, if the time comes for treatment,” says David Chase, who’s been on watch and wait for the last three years. “I feel very blessed to be in this situation compared to a lot of people receiving treatment.”

Andy Lambert took a similar approach while on watch and wait before undergoing chemotherapy during the second half of 2016. “I coped by doing every sports event Bloodwise could throw at me,” he reveals.

8. Don’t be afraid to access counselling

Counselling can also be extremely beneficial, particularly if you’re worried about sharing everything with your loved ones. Bethan Cawley has found it takes a great weight off her chest.It’s a moment in time to offload and say what you really feel and fear; a time to reflect without protecting those you love,” she explains.

9. Trust your healthcare team

It can be hard to accept that delaying treatment can be a good thing, but having faith in your healthcare team, and the years of research that show watch and wait is safe, can help to put your mind at rest.

Vivien Dagley has found this really empowering. “Every time I see my consultant he assures me that the side effects from chemo can be a lot worse than no treatment and, as I am doing well, it's best to leave treatment well alone,” she explains. “Now, I feel very lucky to be on watch and wait.”

10. Do what works for you

There’s no wrong or right way to cope with anxiety, so take the time to find out what works for you. Beverley Renfrew tells us that she fulfilled her life-long dream of joining a circus – so anything goes!

We hope that you find these tips helpful. Please note that these are the personal opinions of the people who have contributed to this blog, and not a substitute for medical advice. If you start to feel increasingly anxious, you should speak to your doctor.

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