Just before lockdown I was diagnosed so feeling in limbo trying to work out what this means for me. I was kind of expecting it as a year ago, after various infections a blood test at the GP showed raised white cells and as a parting shot he said to make sure I got retested in a few weeks in case it was leukaemia. So of course I went straight into stress mode and after a couple more tests by November I had referral to Haem dept but didn’t get the appt till 5th March! I was almost relieved to get the diagnosis and was weirdly on a bit of a high. Seems my lymphocytes not too high atm (9.2) and haven’t increased over the year but reality is now sinking in. I feel I have so many questions and no idea what to expect. The consultant said to continue as normal but then we went into lockdown. I have been exercising a lot as we have fields I can run round but not sure whether I am pushing myself too much. The last few days I have a persistent slight headache and aching eyes - can that be the CLL? Or could be being on Twitter and news too much!
Any advice or tips to a newbie? Next appt isn’t till Sept
Many thanks
Hi @Gwenda
How are you? A big warm welcome to our forum, it’s so lovely to have you join us.
I’m so sorry to hear of your diagnosis with CLL, I can only imagine how things are likely to be even more challenging during this time. How has it been for you Gwenda?
It sounds like you had so much going on prior to getting your diagnosis confirmed. Something like this can bring up so many different emotions, there’s no right or wrong way to feel- and like you say, relief can be one emotion which people might feel. Since lockdown, have you been able to receive any further support and advice from your consultant in terms of how you can look after yourself? In the meantime, our webpage here: https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/looking-after-yourself-staying-home-shielding/ on protecting yourself during this period might be helpful to you.
And i’m so sorry to hear of the headaches and aching eyes you have been experiencing, that does sound uncomfortable. We would really encourage you to talk through any new symptoms you notice with your treatment team, this includes, your consultant and clinical nurse specialist . Has there been any opportunity for you to do this Gwenda?
Hi Su
Thanks for the welcome. I did have a phone consultation with consultant on 1st APril but was feeling really fine then.
It is all definitely feeling more worrying and isolating because of the lockdown though I do have my husband isolating with me too and we are ok getting Sainbos deliveries.
I will phone nurse specialist tomorrow. It’s just hard knowing whether a problem could be CLL related or general health!
Thanks
Ah as you say, Gwenda, it’s only natural for these concerns to be magnified whilst we are in lockdown. It’s so encouraging to hear you have your husband for support and have been okay with securing food deliveries safely. You’re right Gwenda, sometimes it can be difficult to tell whether what you’re experiencing is linked to the CLL or something unrelated, but it’s a very valid concern you have. And you are absolutely right to want to check this, it then will hopefully give you a better idea as to what might be able to help you. It might be worth just noting down the symptoms you have been experiencing, for how long and for how often, and if notice any triggers? This could help you feel a little more prepared for when you speak the nurse specialist tomorrow, and also takes the pressure off you trying to remember everything. Do you find anything helps at all with the headaches and the aching eyes?
Wishing you all the very best with the phone appointment Gwenda, I hope it goes okay, please do feel free to keep talking things through on here.
Hi @Gwenda, a great big welcome to our forum and thanks for your post. You have had the 2 bombshells of your confirmed diagnosis of CLL and the Covid-19. You must be in shock with fears, thoughts and feelings whizzing round, I felt in an isolated bubble. I was diagnosed with CLL in 2003. I am not a medical person but I was put on what they call ‘watch and wait’ or ‘active monitoring’ which is regular blood tests, usually 3 mthly, 6 monthly or annually. This is not doing nothing, but as the words say monitoring our blood test results , our symptoms and medical history and deciding on the way forward. I have been on watch and wait ever since and I think I have been very lucky and long may it continue. It means I have learnt to manage my symptoms that I was diagnosed with. Very personally I don’t search the internet for treatment options because research, trials and treatments are ever evolving. My consultant said to me just live your life. personally I manage my fatigue, I try to keep as fit as I can and I eat my veg, but I am partial to the odd pieces of chocolate. You were so unlucky to have your diagnosis when you did otherwise perhaps you would have got more information and support. Perhaps it would be best to speak to your GP about your headaches and any other concerns you might have. I write all my fears, questions, symptoms and practicalities first. We are all here to support you through this and the Covid-19 lockdown. You can always contact the wonderful Blood cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk. Be kind to yourself and keep posting what going on for you.
Hi Erica
Thanks for your message. I had no idea it was possible to be on watch and wait for years. Here’s hoping.
I have booked telephone appt with my GP in the first instance as it could well be sinusitis which I have had before. So easy to see everything through CLL lens.
It’s reassuring to have this forum to raise concerns and problems. Thanks
Hi @Gwenda, I have been very lucky to be on watch and wait so long, a lot of others have treatment immediately or some time later. Everyone is different with different symptoms, test results and medical histories. I think nearly everyone feels anxious before tests and appointments no matter how long it might be from diagnosis or treatments, also I find it is so difficult to separate other symptoms from CLL, CLL is always my first thought. Please let us know how you get on with your GP.
,
Hi @Gwenda,
I was diagnosed with CLL in March 2014 and it was a strange time then. So I can’t imagine having to deal with everything at the moment too. But it does sound like you’re approaching everything in a sensible manor.
When it comes to head aches and tired eyes etc, I’ve been getting them recently myself recently. But I’ve put them down to working from home plus long walks and not keeping my self hydrated. I’ve also suffered with my sinus’s. But you’re sensible to get anything checked your unsure about.
I’m from the school where too much information can cause a bit of an overload, so I try to keep things to a minimum. You can end up reading stuff that doesn’t necessarily apply to you. But everyone will have there own way of approaching and dealing with things.
My best advice would be to start to build up a working relationship with the Clinical Nurse Specialist as they’re the best people to talk to about your own circumstances. Write down all the questions and concerns you have and simply have a chat with them. They’ll be more than willing to help.
Cheers Anthony
@ajmc27 a warm welcome to the forum! Thank you so much for sharing this about your diagnosis and also offering some great advice to @Gwenda. It can be so comforting for people to know they’re not alone in what they’re going through! How are you doing at the moment?
Hi Anthony, a great big welcome and I wish I could have written your post, such sensible words. I look forward to hearing more about you and how you are doing during isolation. Take care and stay safe.
Hi Gwenda
Sorry to hear about your diagnosis but you are not alone. I was diagnosed around 5 years ago and have recently completed 5 months of treatment. I have been reading posts from fellow forum members for some time and have benefited greatly from their experiences, your post reminded me of exactly of how I felt when I was first diagnosed and hence decided to share some of my experiences.
I also thought that every time I felt slightly ‘under the weather’, it was down to CLL. It never was. I continued to exercise; go running, playing squash, tennis and golf. My consultant told me to continue doing whatever I felt capable of; you will only improve your overall fitness, you will not make yourself ill. I assume you are not running until you collapse with exhaustion. 
Eventually, as my white blood cell count increased I started to get a bit anaemic and felt tired when exercising, particularly running and so switched to cycling. Gears being a great help when cycling uphill. My white blood cell count reached a level towards the end of last year that we decided it was time for treatment. It sounds like you have a long way to go before you blood count requires treatment. After a couple of sessions my red blood cells started to recover and I no longer felt as tired. In fact, increasing tiredness was the only tangible symptom I felt during the ‘watch and wait’ period although as I mentioned earlier my imagination ran riot at various times. Of course having CLL is a bit ‘rubbish’ and everyone has to come to terms with it in their own way, however, once you are able to do that it becomes a lot easier to cope. It is, what it is. I do remember my consultant telling me early on that many people die from some other cause well before CLL claims them. Of course, that was before Covid-19 
Btw, following the treatment I am now running again and would be playing squash if the current restrictions didn’t prevent me.
The main thrust of these ramblings is that it is natural to think CLL is causing all sorts of issues but it probably isn’t. Also, if my experience is anything to go by, continuing to exercise much as you were before the diagnosis will help.
All the best Nick
Hi Nick a great big welcome for your first post, again wise words and thanks for filling us in on your life, diagnosis and treatment. I also believe in fresh air and appropriate exercise. I am not into as many different sports as you but I am a walker, Pilates and Zumba girl. and miss my gym classes a lot. I have been shielding in our flat since Mid March so all I do is a Pilates DVD and some exercises every day. I agree any ache, pain, lump and bump and that anxiety of my CLL whizzes back. I have really got to know and manage my fatigue quite well, I don’t do evenings, but socialise at lunchtimes instead. I realise I really miss social interaction whilst shielding, other means of contact are OK, but not the same. Yes, we will all be here for each other, it is a place I can really share what it is like to be me and know I will be understood, sometimes family and friends just cannot understand. Take care and keep posting.
Hi Gwenda, welcome to our Blood Cancer family. Like Erica, I’m on watch and wait after being diagnosed in 2012 with CLL.
I think you have to go with your gut and do what you feel comfortable with, exercise wise). Stop when you are tired and rest until you are not.
That’s what I do. I am 71 now and have stopped pushing myself to do things. I love to go swimming but, as you will know, that is stopped for a while now. (Can’t wait to get back to it once lockdown is over.
Be kind to yourself ( but don’t feel sorry for yourself), live life to the full as much as you can. Good luck and please keep posting. All the best. Xxx
@Arson Hi Nick, welcome! how are you?
And what a supportive and encouraging message you wrote there I’m so pleased to hear how much you have got out of reading about other forum member’s experiences. You’re giving just as much back in your wonderful support to others, so thank you Nick!
@CLL6 hello there! and I hope all is well with you? that’s such a good point you make about being kind to yourself and being careful to not push yourself too much- so well put too! It sounds like you get so much out of the swimming? As you say, hopefully you can resume this when the lockdown is over.
Thanks for all these replies - hadn’t looked on the forum for a few days. Great to receive so many encouraging messages. Being in lockdown when newly diagnosed does make it harder I think - missing distractions of meeting friends and family and trips out. There is more time to reflect and worry and assume every little niggle is CLL related. Is there a rough guide on what white cell levels would start to cause symptoms or is it individual to each person?
Thank you everyone!
Hi @Gwenda, yes, I agree, I know my emotions are all over the place in isolation, I expect yours are in overdrive, me and my head are often not a good combination, so you are not alone. As for your million dollar question, I am not a medical person, but I think so many variables are taken into account and of course we are all wonderful individuals with existing medical histories. Also, yes every niggle and I go into panic mode. The variables might include the graph of progression of test results and other symptoms we might have. I know it sounds so easy to say but active monitoring (watch and wait) is for me a positive place to be. Please keep posting what is going on for you so we can all support each other through lockdown and beyond.
Hi welcome @Gwenda you sound remarkably together at the moment considering how recently you were diagnosed. I suspect it might not always feel like that, although everyone reacts differently. For me personally it was a huge shock but I was quite sick with an infection at the time. Please don’t read my story too soon as you might find it worrying as I did have quite a rough time. But two things about that, firstly I was rather unusual and the way it has been described to you that you may not notice that much different for a good few years is more common. Also I did come through treatment in a lot better position and I am walking proof there is life after treatment. I would encourage you as much as possible to get as fit as you are able to and eat healthily and try to ensure you have a healthy weight (not too thin or too fat) as that can only help your general fitness and wellbeing now and also moving forward. I have heard it suggested that fit people sometimes suffer less with fatigue and that sort of makes sense if they have a higher starting point. Having said all that there is no reliable evidence that anything we do like that actually alters the course of the disease itself which can be hugely variable all the way from needing treatment in a couple of decades or more right needing treatment almost straight away. So hence the need to be careful when you read stories! I am sure you are at least broadly following the governments shielding advice however and that does highlight the other thing you should be aware of. Even from early on we do have a weaker immune system so things like having some vaccines (especially flu which your whole family can now have free and pneumonia) and avoid live ones, and some version of at least some of the sorts of things we are currently doing for COVID19. Washing hands carefully and not sharing towels for example are two things that make sense to get into your life all the time even from early on as a habit as they dont really cost anything except maybe the need to wash towels more often. The uncertainty can sometimes be hard to cope with so for me I did like to learn more (the rest of this website is helpful for that) and benefited from talking to the support line but also a professional counsellor. Don’t be shy to ask for help and support. Anyway that’s probably enough for now but welcome to the club you never want to join but will be glad to know the members of I hope.
Hello @Gwenda, I hope you’re doing okay today. It’s totally understandable that you have questions around levels of white blood cells and when they may start causing someone symptoms. In case it’s useful at all, we have a CLL booklet and in it there’s general information around CLL, including some information on page 56 outlining the different reasons someone might need to start treatment for CLL. Additionally, in case it’s helpful, page 11 of this booklet, has some guidance around healthy levels of blood cells. However, this is just a guide.
It can be very individual as to the levels blood counts need to be before people start to develop symptoms, and it may be down to more reasons than blood cell counts. We would really encourage you to speak to a member of your healthcare team such as your consultant, if you have questions around this, as they should be able to give you a clearer and more tailored information around this, in the context of your individual clinical circumstances.
Hi again Gwenda
My consultant has told me (and obviously everyone is unique), as long as my Haemoglobin is above 10 and my platelets are above 100, he is not concerned with my white cell count going up.
Hope that answers your question but, please don’t be afraid to ask your consultant what he/she finds acceptable. All the best. Xxx
Hi, thanks for the info. Just looked at my blood tests on GP online access. That gives me some idea of what to look out for. I’m feeling a bit in the dark as to how this disease can progress. I am feeling very well so far. Also wondering whether I should be doing the extreme shielding I am doing when Consultant and GP say my immune system is very good and am at Stage 0. Have been ok doing so far but if this continues for months…
Thanks