Erica’s Watch and Wait story

When Erica was diagnosed with chronic lymphocytic leukaemia (CLL), she thought she had been handed a death sentence. However, 14 years later and still treatment-free, Erica shares her experiences of Watch and Wait.

My journey starts when I had a severely abnormal cervical smear test and a small operation. Afterwards, I felt really rough, very fatigued, and faint. I also lost weight, I had enlarged lymph nodes and I was very emotional.

The gynaecologist could not find anything wrong with me, so he ordered blood tests. When the results came back, he said, “I have never had to tell anyone this before, but you have chronic lymphocytic leukaemia. I cannot do anything more for you, go back to your GP” and then I was out the door.

I was frozen, shocked, fearful, numb and I felt in a bubble, all I could see was the word ‘chronic’ with great big zig zags around it. I did think that I must remember those three words, and I went to the car park where my husband was and I just blurted out the words chronic lymphocytic leukaemia and burst into tears.

I knew nothing about leukaemia except for what I had seen on TV, where it was an instant death sentence. When the gynaecologist said he could not do anything more for me, I thought he meant that I was going to die imminently. Also, at that time, the word ‘chronic’ meant ‘terminal’ to me.

I thought I was the only person in the world with my diagnosis. I searched on the internet and the only information I could see gave a 5-10-year prognosis. My GP surgery nurse said I was the only person on their books with leukaemia and that there had been another person, but they had died. My GP had just been on a haematology course, but I cannot really remember what she said apart from ordering quarterly blood tests and writing a referral letter to a haematologist.

I did not know about Watch and Wait, all I knew was that the professionals agreed I would be monitored by quarterly blood tests. I was given the telephone number of the haematology nurse at the hospital. I cannot remember what I was told by the professionals at that point, I was too much in shock and I was too numb to ask questions, and anyway, I did not know what questions to ask.

My son was not living with us and I told him on the phone, which looking back I feel I would have done more sensitively face to face. I rang my work and said I would not be in that day as I had been diagnosed with chronic lymphocytic leukaemia (CLL) and my manager said he would tell the department. On reflection I think I rather blurted it out to family and friends, perhaps mirroring how I was told. Some people cannot be there for me emotionally, so I get my emotional needs met through some very good friends I am very lucky to have.

I was given a haematology nurse’s name and number when I first saw the haematologist, but I am not sure if I knew why, although I was in so much shock I was not taking in much at that time. Now my GP would be my key contact, support and fast tracker to my haematologist.

Initially I did not deal with my diagnosis well. I realise I do not deal with shock well, my body freezes and I go into myself in a bubble. Over my 14 years on Watch and Wait, my emotions are less heightened. My diagnosis has given me the opportunity of looking at myself, my life and what is important to me. I now notice nature, architecture etc. I am less materialistic and grateful for what I have. I do not care what others think of me. I passionately believe in supporting others with blood cancers and their families and friends and I do this either face to face or on the Facebook groups.

Being on Watch and Wait means that the symptoms I was diagnosed with have not gone away. I know myself so much better now after 14 years, but it has taken me a long time, and I am far more self-aware.

I suppose my main symptom I have today is fatigue. I am still far more emotional, and I do not deal with stresses well, and my fatigue can be set off by me emotionally, physically or practically overdoing it. It can set in 24-48 hours after the event and it usually sets in instantaneously and I just flag. I also do not do evenings as I flag by then.

I have had bad patches of mainly teeth and urine infections. I had extensive dental extractions about 12 years ago. My dentist, GP and Haematologist all worked together, and I was on antibiotics before, during and after the extractions. Because of the risk of further infections, it was decided that I should have two dental plates and nothing more invasive. This has worked well but took me a very long while to adjust to.

I had a hysterectomy and a bladder prolapse operation about three years ago, which have stopped the urine infections. I avoid people with colds and if someone coughs or sneezes I either breathe out or stop breathing for a short while. On public transport, I face the window. I wash my hands after being near pets and young children. I do not do gardening. I keep a pack of wet wipes on me and I wash my hands regularly.

I ensure I have had my pneumonia, tetanus and flu jabs. I got shingles nearly five years ago, I believe due to the stress of moving home, and I have never really shaken it off due to my compromised immune system and it flares up every time I overdo it emotionally or physically.

I struggled at work, as I had always been seen as the dependable one who had not had a day off sick in 15 years; they could not take me being vulnerable. I could not understand my diagnosis, so how could they? Not having an operation to make me better, Watch and Wait, my faintness and fatigue seemed illogical. We mis-communicated and we were each looking at the other’s behaviours and not at our own. I felt very isolated and lonely. They were scared that they did not know what I really did or how I did it, so they took the interesting, proactive parts of my job away and gave them to others and I was left with an admin, reactive role. I just worked, did household chores and slept. When financial cutbacks were needed, the opportunity to make me redundant came and it was a win-win situation.

We were also lucky enough not to have an extravagant lifestyle or large social life, and so we have managed financially. We have only been away for very occasional short breaks in this country since I was diagnosed; we are both happy in our routine at home.

Over the years I have adjusted to Watch and Wait, and my emotions have subsided a bit, although I still get a sick, yukky feeling in the pit of my stomach before my appointments, blood tests and results. I have just been changed to six-monthly blood tests at the GPs, with the promise that I would be fast tracked to the haematologist if anything changes.

I found a website that explains what each of my blood results means. I feel I can monitor my own progression well and I have always tracked my key blood results. For quite a few years I charted my blood tests, that were quarterly then, on graph paper, but it got a bit unwieldy like a toilet roll. I have also always charted all my blood test results on my own Word document, although I believe there are Word or Excel type templates available.

I am a very lucky girl and I have not had to have any treatment. I have really got to know myself physically, mentally and spiritually over the last 14 years. Before diagnosis, I went through life on autopilot thinking life would pan out in a certain way as a wife, mother and employee. I feel I have empowered myself through charting and understanding my blood tests results.

I ensure my life is more balanced now. This meant giving up some things and not going out in the evenings. My weight is now stable. My diet is slightly healthier, I get more fresh air and I definitely do more exercise, either walking or in the gym doing Pilates or Zumba.

Since my diagnosis, I have achieved a number of things that I’ve been proud of. When I was still working full time, I did a one-year part-time course, which I passed; I helped out after the 7/7 bombings; I received a Mayors award for services to local government; I received a London Mayors award for long term volunteering; I became an ambassador for a charity; and I joined a gym.

My advice to others would be give yourself time to take the diagnosis in, you are not alone, Leukaemia Care is there for you and those around you. Write a list of questions you want to ask professionals before appointments. Watch and Wait is good news as it means the professionals can get to know you, research is advancing every day, and if you were to need treatment in the future, it is now very targeted to your particular needs. Lastly, take care of yourself.

Chronic Neutrophilic Leukaemia

Chronic neutrophilic leukaemia (CNL) is an extremely rare cancer originating in the bone marrow.

Read More