Hello I’m 49 and have had cml , been diagnosed 18 months now , I’m on chemo tablets one a day , I suffer with chronic fatigue and awful anxiety .
Hello and welcome to the community, I am sorry to hear your illness is causing you continuing anxiety, the pressure of coping with all that a chronic condition brings is not to be underestimated. What do you think is the core driver behind your feelings, please share if you feel comfortable to do so, we are here to support you.
I think it’s acceptance , I’m on three monthly tests and worry constantly about results . I feel I’ve lost the person I was and I’m just surviving
The 3 monthly reviews are the cause of anxiety for most people on this forum so you are not alone. Having a chronic blood cancer requires us all to see life differently than before diagnosis and develope new coping mechanisms. I find that it’s important to set short and medium term goals that keep your mind In a forward motion, the review interferes with this by taking you back to the point of diagnosis but it can be ameliorated by arranging a positive activity before and after the review, it’s something we have discussed on the forum before and people have found it useful. As for fatigue never be afraid to discuss your therapy with the doctor as there may be things he can do to help you, I suffer badly with fatigue myself so can empathise with you. Are you geting good support from friends and family ?
Yes my support is good , I have two sons 20 and 24 , but still tend to feel alone , hence hoping this group . I try to be positive and am hopefully receiving some councilling shortly .i feel I need to talk to other people in the same situation as me
Hi, yes, a great big welcome to our community forum, there are lots of posts on here that I am sure you will relate to on anxiety, fear and feeling alone. I have found it is only people on this site that really understand me. I can really relate to everything you say and I have found counselling (with the right counsellor) really helped me get to know myself, my fears, thoughts, feelings and my needs. What I would say is that you have gone through a lot emotionally and physically over the last 18 mths. Take care of yourself and have the odd treats you are worth it oh, and keep posting as we are all here to support each other.
It’s great that you are going to have some counselling it will help you to express your fears freely. I believe that once a thought is out in the open it has less power to cause anxiety. It’s hard for people who have no direct experience of the pressures of living with an unpredictable illness to really understand the feelings of isolation it can cause, but you are in the right place here as we don’t see vulnerability as a sign of weakness but as a show of strength.
Hi Jojo48. I also suffer from anxiety and fatigue. I worry about acceptance and being treated differently, not by my family and friends but two of my work colleagues can be insensitive to my illness and presume i can do everything, when i feel knackered out,i do as much as i can do and maintain a professional stance at all times. I was already having counselling when i was diagnosed so my therapist helped tremendously. Always feel free to chat,you can talk anytime. Im a good listener.
and @Jojo48. Yes, the anxiety and fatigue, so many of us seem to have the same feelings. I felt some of my work colleagues were also insensitive and then someone else with cancer said to me that perhaps we and work colleagues were all struggling in unknown territory and not knowing how to be and suggested communication was helpful and it might help (or not) for me to positively say my needs and suggest ‘win - win’ situations for me and my work. I had always been the capable one. I am not good at saying my needs and expect others to know them, as usual it comes from my upbringing. As for trying to explain what fatigue actually is and how it can set in immediately after I have overdone it emotionally or physically or up to 48hrs later. Keep posting how you are.
I’ve spoken to you on Facebook, but I’m here if you need anything
Hi jojo, everything you say resonates with me. It’s so natural to feel alone, and some days it will feel worse than others. A diagnosis is a mountain to get your head round, but you will, in time, though at the moment you may not believe that. I had CBT prior to my diagnosis, and I feel that when I was diagnosed 1yr later that it helped me to deal with things and avoid, mostly (not always!) getting over anxious about what lay ahead. You will hopefully reach a point when you can focus on the good days and not feel utterly overwhelmed by things, but until that point you have this group and as much as we can we will help you through. And don’t be reticent in asking for a referral for therapy from your GP, or just generally reaching out to your friends and family. The dark days are when you need to voice how you feel and be assured that how you feel is perfectly normal.
Hi @Jojo48 welcome to the forum - so pleased you found it, and really hope you find the support you’re looking for. How are you today?
Hi carina, I see from you profile you have hairy cell leukemia, I believe this is super rare but with a excellent prognosis. Are you having active treatment at this time or in remission, I have primary plasma cell leukemia which is also very rare. How does your condition effect you on a daily basis ?
Yes, I have the worst named leukaemia, but it generally responds very well to treatment. The flip side is that they think, and they’re not sure because it’s so rare, that it increases the risk of secondary cancers. I have been in clinical remission since Nov 2017. Physically, on a daily basis I’m generally good. Sometimes, probably once a fortnight now, the fatigue hits me like a brick wall. I’m conscious of the fatigue, so I try to pace myself and get lots of sleep, and I’ve become very stress averse, which I hope will in turn delay my inevitable relapse further into the future. I’ve changed a lot in my life. Emotionally I have dark moments when I fret, worry about feeling off, worry about when it’ll come back, worry about what else it could trigger as it suppressed my immune system for so many years. As time passes those dark moments lessen. I’m coming to terms bit by bit with my hairy little critters, even the fact that they’re already multiplying again inside me. The contrast now to how I felt for the 3-4yrs before diagnosis is incredible. I try to focus on that, enjoy it for as long as it lasts, and be thankful that my hairies do respond well to treatment, even if the treatments can be grim in themselves. I’ve wittered on! How are you? How does yours affect you?
My leukemia is very rare about 1 person per 1 million of the population, it circulates in the peripheral blood and has a liking for your kidneys and took mine and now I am on full time dialysis. It always relapses so it’s something I’ve come to terms with already. I’m off treatment and in remission so am just cracking on with life, main issue is fatigue but that’s partly to do with the kidney failure. I haven’t really suffered that much compared to say someone with aml so I’m grateful for that, there’s always someone worse off, a cliche but it’s true.
I have just been told that nice have approved a new drug via the cancer drug fund for when I relapse so I have some hope for the future. Overall I would say I am doing as well as can be expected considering the seriousness of my situation.
I’m not surprised you suffer from fatigue when it’s affected your kidneys in that way. I feel for you. 1 in one million. That’s almost the same odds as winning the lottery? Mine is 3 in a million. I definitely feel that of this lottery I’ve not done too badly. I feel odd at times even saying I have leukaemia as I’m so conscious that you and others have suffered far more than I have. Sometimes I feel like I’m admitting it rather than just saying it! Fabulous news re the new drug. Likewise with mine there are already different treatments out there since I’ve been diagnosed, one of which I won’t get to try until I’ve relapsed 2x. The developments are incredible. How do you cope with the fatigue? The keeping it at bay. Dealing with it when it hits? There’s not much guidance out there that I ever found particularly useful. Though I appreciate there’s no magic answer to these things, and fatigue is so nebulous!
It’s the fatigue that bothers me the most it’s very random but is at it’s worst in the mornings, I’ve never really found a reliable way of overcoming it as it doesn’t seem to be alleviated by sleep, I suspect that doctors don’t really know how blood cancer works at that level, as long as your hemoglobin levels are ok they have no answers. I know I am not alone in experiencing this so don’t feel singled out.
Hi there, Have you clicked on the 3 lines at the top of the page where you can see the main headings of topics covered? You will find there are many posts about how people deal with fatigue during and after treatment. Best wishes
Hi @Alfie. I am sorry to hear that you need full time dialysis. Apart from fatigue it must limit what you are able to do. How does it affect your daily life? Do you have home dialysis? Best wishes
Do you know if we can download the forum as a kind of app on our phones? I might have used the wrong lingo - I’m not techy!