Anne Freeman
Posted by

Watch and Wait or Watch and When?

Anne Freeman
Posted by
17 Feb 2017

Coming to terms with being a CLL patient stuck in the limbo of Watch and Wait


Initially I had no realy symptoms to speak of but had to have a blod test for a different condition. I went to see my GP for the results, he advised I had an irregularity in my blood so would need another test.

After this I returned to my GP for the results and was advised point blank that I probably had a form of leukaemia.

I was taken aback and asked if there could be a mistake but she was quite blunt and coldly replied no before telling me she was going to refer me on to a haematologist.

I was sent an appointment several months down the line, referring me to Darenth Valley Hospital.

First appointment

I went to the first appointment on my own and was taken aback at how insensitive he was. Barely looking up to greet me, he gave me my diagonises with a 'sorry about that' grunt!

The briefest of examinations followed and he told me I would not need medication but would be on 'Watch and Wait' with six monthly blood tests. He gave me an appointment card emphasising I would need to have the bar code scanned for my blood test.

I left the room quite upset at how insensitive the whole scenario was and I think it would have helped if I had been givin some information on the condition.

Follow up appointments

For my second appointment I took my husband with me. He was amazed at how aloof the haematologist was. Again he barely made eye contact with us concentrating instead on his screen. He advised that he was now referring me back to my GPs care for my next 6 monthly check-up.

Consequently, every 6 months I had to go over the fact I had chronic lympocytic leukaemia and was there for my check. My results were never explained to me or put in layman's terms. I was told they were ok but this left me wondering what ok was! I was not happy with their response so asked to be referred back to another haematologist at Darenth Valley. Unfortunately, this seems to have backfired as after one consultation back at the hospital all subsequent appointments have been cancelled or deferred for no reason. It's now over a year since I have had a consultation which is an added worry.

Life on Watch and Wait

The effect on me mentally has been quite significant as it tend not to be 'Watch and Wait' but 'Wait and When?!'. However much you try to convince yourself, you think every ache and pain could have a sinister undertone.

I have had to give up my job because there was little or no understanding or compassion with regard to my condition. On one occasion a colleague actually said to me 'they probably think you are lying about what you have.' I suppose this was because I always made an effort to look my best - but appearance can be deceptive.

My symptoms now seem to be joint pain, fatigue, frequent coughs and colds and headaches amongst other things. Whether this is due to CLL or my age I'm not sure!

Although my youngest sister has been on Watch and Wait with CLL for 15 years and my middle sister has had CML for 8 years and is on medcation they seldom speak about it. I am naturally worried that as all three of us have blood cancer this could be hereditary. I know of a number of leukaemia cases in our local vicinity which is an additional worry to me but knowing I have the support of Bloodwise has been a big help. 

Visit our patient information pages for more information about chronic lymphocytic leukaemia. For general information about blood cancer and the support and information available please don't hesitate to get in touch with our patient services team on 0808 2080 8080 or by sending us an email at



Hi Anne, I was on watch and wait for 3-1/2 years before treatment started.  After the initial flatenning of the diagnosis and the mild depression I could no longer carry on being miserable because who knew how long it would be before I would ned treatment.  The indeterminate time from diagnosis and treatment is particularly cruel, every check up feels like a game of Russian Roulette, will it be this time!  Luckily for me I had no side effects apart from the lymph nodes swelling and becoming extremely noticeable so it did not stop me from doing normal things.  After the down period I started to control what I could control and parked the rest.  When I took control I got as much information from reliable sources that I could, and eventually signed up for the FLAIR trial. I got myself as fit as possible running a number of fundraising events for Bloodwise, as my thought process was running makes you physically stronger, mentally the feel good glow from exercise is the best legal high.  I also started emptying the bucket list with some fantastic holidays and experiences.  So although it is called "watch and wait" which we all call "watch and worry" I changed it to to "watch but act".  Worrying is natural but horribly negative, and in itself debilitating.  So I exchanged worry or wait for act.  This made it a much more positive use of the time before treatment started and I actually felt a great deal lot better for it as well.  For me I controlled the controllabe and parked what I could not control, and turned "watch and wait" to "Watch but Act".  I know my approach is not for everyone, but even if there is something in there that can help then thats great.  Best of luck going forward, and remember there are always things you can do to improve you luck.

Make a donation

I would like to give...