Hi Nichola, I think I have accepted my CLL over the years, but it took a long time. Since my diagnosis I have really got to know myself and what I want out of life. I am far less materialistic now and the best things in life are free, like family, friends, music, nature etc. I now make sure I get my needs met and I have more of a voice to ask questions and follow up questions of my medical team. I also understand how my CLL symptoms affect me daily and I am now a lady that lunches and goes to matinees. I donāt do evenings and I have the odd nap when I need it. I am also work in progress.
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Iām like that - a work in progress! X
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Sounds like a really good outlook Nichola, weāre here if sharing your thoughts and feelings helps!
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Gosh, Iām having a bad few days. Iām trying so hard but feel quite low. You wouldnāt know to look at me. Iām doing a really great job of enjoying the school holidays with the girls. Iāve been out with friends and family and and carrying on as normal. Thatās hard though isnāt it, when you do such a good job of putting on a brave face but inside your own head is a different story. Iām disappointed with myself. I thought I was doing ok, that Iād got better at managing when actually - these last few days - all the thoughts and feelings I had in the past have come back. Iām feeling anxious, I feel panic in my chest and Iām so tearful. Iām feeling extremely guilty about feeling like this which adds to the pressure to snap out of it. I have a friend going for chemo next week and she canāt see her family for 10 days. She is petrified and there is me, on watch and wait, feeling and looking healthy. I know I shouldnāt compare. I know thatās dangerous but surely, at some point, I should thank my lucky stars Iām not in their shoes. But I canāt shake this feeling. I canāt shake the panic, the fear of the unknown and the bigger fear of knowing itās never going away and that one day it might be me having that treatment. I canāt get rid of the tight feeling in my chest. I canāt stop my mind from thinking about it almost every minute of every day, during conversations, watching TV, listening to a music. So, thats me today. A bit of a rant because I donāt know what else to do. Iām worried that this low feeling is holding on to me quite tightly at the moment. So tomorrow I will get up and try again and hopefully as the week goes on it will start to improve. If it doesnāt at least Iām aware of it and have the support I need to help me work through it - the challenge here is being honest and asking for the help. Lots to work on this week. Thanks for listening X
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Hi Nichola. I think those first few sentences also provide part of the answer to why you are struggling at the moment." I am trying so hard, I am doing a great job of enjoying the school holidays with the girls. Iāve been out with friends and family and carrying on as normal." Donāt be so hard on yourself. Donāt be disappointed because you are struggling. Your situation is no less worrying or less important than your friend (and I hope all goes well for her). I hope your rant has helped a little, but donāt struggle on like this. You say the challenge is being honest and asking for help, so please use your support network. The people who love you would be devastated to know how you feel. Your emotional well-being is as important as your physical well-being. Sending much love, and please let us know how you get on. Louise xx
PS Feel free to rant anytime 
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Hi Nicola, I am so glad you feel able to be honest with us and really have a rant. It must be so exhausting putting on the āIām fine and coping wellā mask. I wonder who would realise that perhaps you would love and appreciate a bit of help and support when you have the mask on? I should know I was brought up that it was a quality to cope and a weakness to ask for help, let alone show emotions and nobody likes a weak person. Perhaps just think what you have been through physically and emotionally and I expect you keep coping, but then your body and anxious emotions, that might still be on high alert, say āhold onā, I have had enough, there is nothing left in my batteries. Perhaps you just need time to heal physically and emotionally.
A weird side issue was that when I told friends how I was really feeling and that I would appreciate some help we felt closer and they were really pleased to help. Perhaps it is a time to really look after yourself and spoil yourself and replenish your batteries. No, as you say you cannot compare yourself to your friend, but perhaps a call or text to say you are thinking of her would be just what she needs. We are here to support you or the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day please feel free to rant, I feel I know you so much better now.
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Thanks so much Louise. I just read my rant back and it really was a rant wasnāt it! Thank you for taking the time to read and reply. It means a lot and I do take on board what people say. It did help just getting it all out. Sometimes the nighttimeās are the worst arenāt they! Today Iāve slowed down a bit. Had a little cry and let it out. Housework on hold and just a quiet evening planned. It really helps sharing on here - easier to write than to speak. A big thanks again X
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Thanks Erica, life is so busy isnāt it and you have to get on with it, but yes, I think I just need to slow down a little. It really helped having a rant - got it out of my system. I have two weeks of school holidays left before I return to work so Iāll make sure I have some quiet days and time for me. Thank you for listening and replying. It really does mean a lot X
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Hi all
I agree with all thats been said above.
I often get the feeling folk think I am a fraud because I look well. I learnāt not to say āIām good thanksā but rather that āIām doing ok at the moment thanksā when asked how I am. That seems to take the edge off the question.
My phycological state, does seem to go up & down with the demands of life and my ability to keep things in check & spreading the load. I have learnāt to slow down my schedule when the mood goes down, do more lazy days until I feel better. Seems to work for me. Also learned to bother a lot less about what other people may think or say about what I do or do not do.
My advice - listen to your body let it lead your way and be nice to yourself when you get low. Have no qualms about telling others you are not great today and just need to drop out/rest. 
you will always get those who think youāre whingeing but they are not in youāre shoes so ignore them. Developing a good blank stare or saying " Oh I did not realise you have cancer experience" is usually enough to quell that kind of attitude, especially with an audience 
Special flowers need special care, not bullies stamping on their heads. 
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Hi Karen - some really good advice again. It really helps reading all the replies and I keep going back and re-reading to really take it in. I like the reply of āIām doingā ok and not āIām fine!ā Iāve also taken it a lot slower the last couple of days. And youāre right, getting over nit worrying about what other people think would really help. I hope you are well and thanks again xxx
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Hi Nichola Iām sorry to hear youāre having a tough time. I think others have been incredibly wise in their advice. I think I just wanted to add that itās okay to be having a tough time, and even though youāre not on treatment doesnāt mean you shouldnāt worry or have difficult days. Be gentle on yourself, and ask for help when needed. I hope youāre okay, weāre here if you need anything at all. Take care
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Hi. I think too many of us, especially women, have been brought up to put everybody elseās needs and wishes before their own. One thing that having had a cancer diagnosis taught me is that saying no sometimes is not a bad thing. We also need to be more ready to accept help with good grace, after all, how many of us actually take up those offers. People will only be rebuffed a couple of times, then stop offering.
@Karen-Ireland I like your comment about developing the blank stare and the thought of us being special flowers
@Nichola75 Iām glad you are taking things slower and that it is helping being in touch with us. You are never alone
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They really have given some great advice and Iām really glad that I shared how I am feeling. Thank you Dawn, everyone has been so kind and it really has helped x
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Practising the blank stare already!
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Hi everyone, just read through everyoneās comments and they all really resonate! It does get to be such a strain living with this and trying to fit into the world around you. I mean like today I was in the shower and noticed some strange bruising and immediately the panic set inā¦ then I thoughtā¦ āhow many of my friends have these moments of panicā ā¦ not many and they really have no idea how mentally draining it is, do they notice bruises and immediately think ācancerā.
At the moment I am dealing with constant niggling anxiety so itās good that we have this place to come to for support and to share our thoughts.
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Yes, unexplained bruises, is it a lump or bump, the odd nose bleed, an ache or pain etc. etc. I can feel my anxiety levels rise just typing this.
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It is such a good place to share thoughts isnāt it! That āniggling anxietyā is a such a pain. It can just creep back up on you and can be hard to get rid off! How do you deal with it? Any good tips?
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Thank you all for sharing, I hope itās reassuring to know you can reflect and let your feelings out here! What helps you @AnnaMam or @Erica when anxiety flares up?
I find grounding techniques helpful if I feel very panicked in the moment.
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I use this a lot and itās amazing how it does manage to get you into a calmer state of mind
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