Hello. I have posted a couple of posts before. My history is I was diagnosed with stage A CLL in January this year. No symptoms apart from tiredness and one larger than normal lymph node in neck. The diagnosis completely knocked me sideways and I thought the end was nigh. I still cannot accept the fact that I have it. I'm 59 and not working so work is not an issue. I can't seem to get it out of my mind unless I distract myself with other things but it always comes back. I no longer feel happy and content, now I feel sad and bitter. I am doing a Talking Therapies CBT course which sometimes helps. I don't want family to feel sorry for me, I feel people don't really know what leukaemia is and don't really know what to say. My fear is not CLL but the fact that secondary cancer could develop and I'm not being checked for it. My 2nd consultation is next week but it's been changed to a telephone consultation which I understand but I would have preferred to have been examined. I've been told I qualify for free prescriptions now but I can't even collect the form from the gp as I'm supposed to be shielding. But that is a minor concern compared to covid. Any advice on how to cope would be appreciated because sometimes I'm overwhelmed by tiredness and cannot do anything.
Can't accept CLL diagnosis.: Hello. I have... - CLL Support
Can't accept CLL diagnosis.
I was diagnosed 6 years ago this month.... I was utterly devastated.... I felt like was drowning, and was nothing to grab hold of.... My stomach muscles were in knots....
I had blood tests ever three month, to see if the CLL was progressing, it wasn't... I met a lady who also had CLL, she was diagnosed 25 years ago, and still the CLL hadn't progressed
It isn't great, having the sword of Damocles hanging over our heads, but for me, it's easier to accept I have CLL....
Over the passage of time, the terror has abated..... I'm much more philosophical now....
I wish you peace of mind.... It just may take a little time🙏
Hi Dracaena,
I am always overwhelmed with exhaustion. The thought of getting up is often too difficult to imagine...but I do.. i force myself to get up and exercise. You've just got to move..once you get going it gets easier.
Hello Dracaena, for most of us if not all of us have went down that same path when diagnosed. It's a hard pill to swallow. I was diagnosed end of 17 and I was in disbelief I couldn't sleep for months anxiety and depression took the best of me. All I did was cry all day my appetite went away, lost 35pds. Im seeing a therapist which it's helping me somewhat. You're newly diagnosed and even though you will always think about cll it will get better. I hold on to the fact that there are better meds today. And happy I wasn't diagnosed 10 years ago when they didn't have much for this. Good luck to you Dracaena👍.
Hi Dracaena,
It's great that you have proactively engaged in a CBT course, but do be patient with yourself. It does take time to adjust - about 2 years in my case after I was diagnosed at stage IV and began with monthly blood tests. My treatment prospects back 11 years ago were limited to just chemoimmunotherapy. We didn't have the range of gentler, more effective oral treatments increasingly becoming available now. Survival times have considerably improved and will continue to do so. You can look forward to a near normal life expectancy (particularly when you learn here how to look after yourself) and likely a cure. I started my first treatment last December and I've responded incredibly well.
Fatigue can indeed be a challenging symptom, one I struggled with until I adjusted to pacing myself and accepting I'd need a sleep in the afternoons and even some mornings. I found that my vitamin D was below the normal range and was able to do more without getting as fatigued when I boosted that into the normal range. Amazingly I found that provided I wasn't exhaustingly tired, going for a walk really helped - but I quickly located and used nearby parks that had seating! While you may not be able to get out now, do you have a garden you can use or perhaps some stairs inside?
With respect to the form from your doctor, can that be emailed or posted to you?
Neil
Thanks for your reply. You are right, I have to be patient and let time pass. Yes I do have a garden and do go out for a daily walk as well. I will contact the doctor about getting a prescription form somehow.
Hi I think all of us will have experienced what you are right now, on initial diagnosis and in my case on being told I needed to go into treatment 6.5 years later.
Both occasions sent me into a state of shock and disbelief given I felt as fit as a fiddle both times.
You need to give yourself time to process the shock and come to terms with your diagnosis and the uncertainty that comes with it.
It is good that you are receiving psychological help. Talking both professionally and with other trusted friends, including people on this site, is a good way to help yourself move ahead.
I always found and still do educating myself about my condition helped. I did most of this on this site. It reduced my fear and helped me take back control of my own thoughts and feelings. Every time I felt overwhelmed I told myself that I was lucky that research had produced many new medications to treat this disease and that I may be one of the lucky 1/3rd of the CLL population who never need treatment.
This is a brief rundown on my experiences and how I coped, I hope sharing these helps you.
Take care and stay safe, you will get there.
Ann
Thank you for your reassuring words.
I was diagnosed in Sept 17 and felt much as you do now. Apart from the blood tests I was given a PET -CT scan. Post Covid it might be worth asking for that yourself. Maybe have a think about who you share your diagnosis with too. I found that some people couldn't cope with me not being rushed in for chemo! As Ann has said lots of people never need any treatment at all and hopefully you will be one of them. Aussie Neil I see has responded to you and as you explore this site you will realise that he is a walking encyclopedia of knowledge about CLL and he has the gift of explaining science in an accessible way. Also the other Admin and Volunteers who all have excellent advice. Please remember that we are all here for you and no question is ever too big or small. Take your time and be kind to yourself. Very best wishes.
Sharing your diagnosis! That's is a key issue.....
My dad was in his late 80s when I was diagnosed, I couldn't bare to tell him, I just didn't want to see the pain in his eye's...... Dad passed, without knowing, 3 years ago..... I'm so glad I didn't tell him.....
I've only told a few members of my family and one friend.... I don't see the point in upsetting everyone, and putting extra pressure on myself.....
I can enjoy being 'normal' without the pressure of CLL being the main topic, every time I meet someone... This is how I do it, it's not for everyone.......
But, I would urge you to think before you tell anyone..... You can't put that Genie back in the bottle.
Totally agree
I did the sane
To live normal
Try to forget and not to tell anyone else
You can live with cll and die from another cause other than cll
Also most of cll people have no symptoms
So why to worry about it
It works for you and I..... I don't want to live CLL 24/7.....I need 'normal'...... It's just easier to breathe...... It may get me proper, in the future, but for now...... I'll try not to let it interfere with my life.....
I was diagnosed 13 years ago and am still on W&W. I also never told my mother and she passed away 5 years ago. So pleased she never knew. I have also not told my grown up children and feel that they don’t need to know as I may never need treatment. If I do need treatment then maybe I will need to tell them.
So pleased I have found this site. Really helpful to read other people’s views and to realise that I am not alone in my thinking.
Stay safe and well everyone.
You're definitely not alone in your thinking...... There is no point in worrying our friends or families if we don't have to, it may a negative affect on their thoughts..... Upsetting my family, would upset me greatly.....
I agree. I was diagnosed exactly 2 years ago and spiralled into anxiety and depression. I suffer from heart palpitations and GORD but was very healthy and active before routine blood test showed CLL. It does get easier with time although like you I haven’t told my elderly father. I can’t tell him I’m shielding but at least he thinks I am keeping safe during the lockdown.
I agree.I was diagnosed two years ago and have only told my children and a few close friends.I decided to not tell my parents who are both 90.Why worry them? I'm sure I'll out live them!
Exactly! It has a knock on affect..... We are not the only ones that suffer.... Although I won't tell my daughters, until really have to.... If I'm really lucky, I may never have to tell them....
I have the same feeling I haven’t told my 15 year old daughter. I don’t want her to worry about this as she’s trying to get though high school. I hope I never have to tell her either.
I hope neither one us of has to break our childrens hearts.......I have written all of them letters, explaining why I have not told everyone... Just in case, I 'exit stage left', without warning..... I don't want them to be bitter towards the people I did inform....
I was thinking the same thing last night about writing a letter. I think we will be fine and never need the letter
It’s a very tough thing to hear and accept. I see a psychiatrist about this and over the past 2 years I’ve gotten much better mentally.
I look for advice from patients on this site as they’ve been with this condition and have been educated on this topic.
With speaking to my Dr’s and the great members here I’ve learned to cope. Understanding like Neil said people are living near normal life expectancy’s with this condition. I can’t speak as well on secondary cancers as well as others on this site but I will give a little bit of my knowledge. Have yearly check ups with your dermatologist and other routine exams. Other then that I take it one day at a time. And if you need anti anxiety medication see you Dr about that, I’m on them and they have been helpful.
Keep your chin up your going to be ok !
Best wishes John
Getting a CLL diagnosis is a major blow even to the most stoic people. I was diagnosed about 2 years ago, and still go back and forth as to the gravity of the issue.
Part of the inability to accept things - at least in me - is the inability to sit there and just wait with a cancer. I've always heard my whole life that when you have cancer, you try to get rid of it ASAP. That is not the case with CLL.
I felt fatigued for a while (still do), but think that it is transient bouts of depression about CLL. Could that be some of what is tiring you? And to be told you have CLL in these COVID times - i.e. - a time when it is difficult to even get to see a Dr up close and personal. I understand where you are coming from.
I was 65 on diagnosis (you 59?) - and to me the CLL diagnosis kind of signaled a turn toward the end of life. Frankly all that was a bunch of BS. There is a lot of hope with CLL. CLL more often than not does not appreciably turn you into a patient day and night. Yes, we have to take care of watching, waiting, and managing the disease - but we can go out there and do all the things we did before we had that diagnosis.
Stick around here and you will hear from so many people that have gone through what you have just had to deal with. You will see that their lives go on and they live incredibly full ones. With regard to treatment - if you ever need treatment - you will hear how much science and medicine have stepped up when it comes to CLL. There are many good ways to treat CLL, and often with little or no compromise in the way you have been living your life this far.
So give it time. You have had to absorb a lot in a very short time. The time will come sooner than you think - when you go for days not thinking about the fact that you have CLL. Good luck.
Jon
Thank you for your reply. You are correct. It's a combination of depression even before diagnosis, diagnosis of CLL itself and being diagnosed in these covid times that is causing tiredness and negative thoughts especially about secondary cancers developing. I will let time pass and look after myself. Some days are better than others.
Yes, it's a shock to be diagnosed with CLL - for sure! These COVID times are really upsetting me too as we are "sheltered in place" at home 24/7 with no end in sight. We're starting week 6 with a long time to go.
I actually see COVID as a bigger threat (and bigger source of depression) as I am 67 with CLL. I will admit ... I wake up every day upset to realize the reality of the situation. After an hour, I want to go back to sleep again. That's normal!
There's a whole lot more known about managing CLL than COVID. It kind of puts CLL into perspective.
Hi Dracaena, I remember how it was with me. Shock, disbelief, sadness, depression, anxiety and reaction from people I confined in about my cll. Some thought I was contagious. Many didn’t believe me because I didn’t look like I was dying.....don’t count on people to understand what you are going through. That’s why cll groups like (HealthUnlocked) is so helpful.
It gets easier over time....just know that if you ever need treatment, there are many good options.
Win
Hi Dracaena
We all go through this stage and it is the toughest part I believe, it becomes a challenge meeting people as they seem to have that look that says “poor you but unfortunately I don’t know what to say” , you start to feel you have been written off.
This will pass , you will find people in your life that will become your rocks through this and believe me you will be surprised which they are.
Something I feel was a mistake I made was trying to protect others by downplaying the whole situation and telling people its not that bad, which then led to almost denial in it myself.
I guess from your post you are on W&W and long may this last, but it is a very treatable condition with many options and reasons to be optimistic.
In regards to secondary cancers this is a bullet you could be worrying about that may never be fired.
A good friend of mine who has had two much more aggressive cancer’s and has won both battles gave me two pieces of advice that stick with me.
“ Don’t let cancer bully you “
“ Always try to be a warrior not a worrier”
Good luck and stay well, you are in good company on this group.
Dell
Hi Dracaena,
As you can read many of us were knocked sideways by the CLL diagnosis. Mine was about 12 years ago, and I've been treated and am in remission for nearly two years.
CLL is still largely an old man's disease, and you are not yet 60. I remember the death knoll reverberating around the word "Cancer" in the 60's. My mother died at the age of 67 from CLL. Little could save her because the limited treatments that were available were worse than the cure. It was terrible. Now there are incredible new generations of drugs that bring remission for varying lengths of time. I have no idea how long you have ahead of you, but at this moment, it is probably a lot more than you think.
There are positives from the negatives. CLL made me aware of my mortality. In my head I knew I would die, but it didn't impinge on my life. With CLL I became acutely aware that I was in the winter of my life, that my time was finite. I resorted my priorities, did those things I had left undone and set about those tasks that needed to be done. My life is all the richer with my family, with the beauty of nature and the miracle of life that I don't want taken from me.
I remember the well-meaning exhortation of my Sunday school teacher to "live each day as if it is they last". To a child, the advice is superfluous. At five was rushing headlong into my unfolding life. Now with experience tucked under my belt I realise the phrase is not about death but about relishing every moment of life. Finally, the big, heavy penny dropped.
Sometime people comment that CLL is one of the better illnesses to have because you have time. It's not good news, but it isn't the worst. I wasn't wiped out in a car crash, I am not paralysed from a stroke, I don't have dementia, my life expectancy is not measured in days, weeks or months. I have time and I am deeply grateful for that.
Like most of us you will go through manyyups and downs during your treatment. I have found the contributions from members who have been through what I am going through, a great comfort. And, of course, they came out the other side. I hope you stay in contact and continue to share your experiences.
Best wishes,
Peter
I was diagnosed at the end of 2018, I didn't feel ill but had developed raised lymph nodes in my neck. My GP originally thought it was a vaccine reaction after travel jabs, when they didn't go away he then thought it might have been a cyst on my lymph node but sent me for an ultrasound before draining and there it began. I too was beside myself with fear and it took a few weeks to accept that this was probably something I would die WITH not OF. I now think of my CLL as an unwelcome friend that won't go away but my philosophy is that I feel well so therefore I am well.
Please know that this forum is the best place to ask questions apart from your medical team. You might also contact Macmillan who have wonderful community nurses able to answer questions.
Take care and stay safe
I was diagnosed in 2007. Like most, the diagnosis knocked me sideways. Lots of crying from myself and family. However I soon got over that and decided, like most, I was not going to let this illness rule my life.
Since that day I have worked, retired, gone on great adventures, loved my family more than ever and just got on with life.
That was 13 yes 13 years ago. At present I’m on Ibrutinib and life is still looking great and I expect to live for a lot more years and hopefully will die with this illness and not because of it.
It is hard to come to terms with it. But try and embrace it and don’t let it define who you are.
You’ve got this 😀
I do wish you a peace of mind ! It may sound odd but CLl od the best option aut od all leukaemias, do nit worry im advance ! I was diagnosed 6 years ago, gór five years it was just wait And watch, no symptoms, then wbc started to grow rapidly at136000 they gave me Fcr chemo, despotę my fears it was easy ! After 1,5 courses results were Very good And still are ! For9 month now ! Live normally ! The worse was feeling helpless, I did test Food Detective And excluded all intolerances And meat, dramatic change of diet but gave me The feeling of doing something And my body do function much better ! Please be optimistic, At leastthis disease doesn’t hurt ! It will be well !
Hi Dracaena,
I see all your replies let you know you are not alone. I'm a year into this and it did get easier for me, it is a matter of time. I treated it like grieving, for me, it is the loss of what I thought you knew about my life, now things are uncertain. The website below recognises this and might be useful:
nhs.uk/conditions/stress-an...
I have a local Maggie's Centre, do you have something similar? I found I really needed someone to chat to someone who could understand. They use a quote from their founder Maggie Keswick that really got to me:
"Above all, what matters is not to lose the joy of living in the fear of dying."
I hold on to that when I feel myself slipping and losing grip, take care.
I use my local Maggie’s too. Sometimes feel like a bit of a “fraud” being on Watch and Wait but knowing what many of the Service users must be going through helps to put things in perspective. I still sometimes think “why can’t tgey just zap me with something and make it all go away” however from reading extensively I know this wouldn’t be possible or useful. The psychology support at Maggies is great, not CBT based, whilst CBT can be useful just being able to talk to a Psychologist as much or as little as required has been great, with no “time” restrictions in terms of sessions which would often be the case going via the NHS. Stay strong, it’s a weird disease we are coping with.
Glad you found them too. It's a great service and they fully understand the frustration of initially not being able to 'do' anything. Considering they support family and friends too, you definately have the right to be there 🙂
Hello Dracarna,
I was diagnosed age 57 following a routine screening mammogram.
Like you I really struggled to start with but have learnt over the past 5 years that this is a normal response and somehow accepting that the feelings were normal, helped. I thought about it all day every day that first year. Year 2 I had another low point but now I think I have adapted. Find a support network, I am new to this site but it's a very helpful good one, these folk understand, they are in the same boat, you will find others don't know what to say, or think they do but it's not what you want to hear. Some reactions make you angry, some upset you try not to let that ruin long standing relationships (hard!) Do what you enjoy, you will learn to enjoy your life again. Good luck
I was diagnosed in 2001 have been on watch and wait since
Diet and exercise will help.
I used to worry in beggining
There wasn’t the info that there is now
I still have blood tests and check ups,I am 82 this year (end June)
Nearly 20yrs so look after your diet and some exercise , read up ask ?with you oncologist
This sight is very good
Good luck don’t worry
Take care from this Virus
Sensara, would you mind sharing a little bit of your diet and exercise routine? Your story is so hopeful. : )
Thank you & God bless.
Low carbs ,cut out potato,pasta Rice, treat sometimes,fill up with plenty of green vegetables , and pulses
Buy sugar free products Greek yogurt,as much exercise as you want, minimum 20 min a day walking.dont sit too long without moving.
Green,white,red or ginger and lemon tea
1 coffee per day.Thats what I do ,google
Diet for CLL plenty of info On this sight,try to avoid preservatives,you need to work out what suits you.everything in moderation
I hope this helps
Very helpful! Thank you so much! : )
Hi Dracaena,
It does take us all different lengths of time to get used to the idea of living with CLL, but I think most of us get there, ok maybe with some hiccups from time to time.
I think I have to admit I'm a much happier person now than before CLL and even in this new pandemic age. Before CLL I simply drove myself into the ground, and never paused to take stock.
You have some good answers. For the exam I'm thinking they can explain to us how to do this ourselves. Guess there might be a training video somewhere.
Not having bloods checked is more of s concern, but I'm hoping you are not at an acute stage. I would discuss that point, and I'm thinking the clinicians will find a solution to that. I'm not sure of the two issues, test capability and risk of testing which is the main issue (and I guess different areas will be different). I have wondered if anyone has ever taken their own bloods in a tricky situation (no I'm not suggesting anyone try that at home)
Wishing you well,
Ernest.
Think we can all understand how you feel ! This diagnosis coming from left field .... unexpected , frightening , Leads to anxiety. Maybe sleepless nights , and a whole host of other stuff until we get a handle on this and begin to cope ....We all cope differently ( and our CLL is also unique .... definitely not one size fits all ) Whatever works for you. Whatever helps you cope is good !
You have to give yourself time to adjust.... and then develop a strategy that works for you !
This site is awesome! In addition to the great advice..... some of which is relevant to you and some advice is not for you , the quality of people here is above and beyond .... People care , people are willing to share and help and the daily news briefs helps focus ones attention on CLL once a day and then go on with our daily life the rest of the day ....
When something changes, or we need support we know there will be someone ....administrators or volunteers or even regular people who understand and are there for us!
You will be able to cope and when you are feeling a bit down we all are here to support .... as hopefully you will be to help us as well !
Be Well!
👍👍
I am in exactly the same position as you, diagnosed in Jan, age 59 no symptoms, not working.
Routine blood test picked up high wbc, cell markers test done but Dr said extremely unlikely anything wrong. Not heard back for 3 weeks so chased up, Dr rang me back and said "sorry for delay, you have CLL but dont ask me any questions as I am not an expert, will refer you to Haematologist"
World fell apart there and then, assumed that was a death sentence, would I last the year?
Couldn't wait for hosp appt, but found this website, CLL society, and a great booklet by Macmillan which explained things really well, and made me feel a little better.
Saw Haematologist after 8 weeks, she said that she was shocked the way the Dr handled it.
I am on W&W next appt 6mths, she gave me hope that when required there are many good treatment options, but many people never need it, she told me to get on with my life.
Then Covid struck and i'm isolating for 12 weeks like many others.
I now feel that the CLL needs to go on the back burner for now, and we need to get through Covid first, but feel better that hopefully the long term prognosis for CLL is pretty good with new treatments being more effective and developing at a fast pace.
Are you in the UK? Happy to keep in touch to share feelings as things develop.
Hello Mark, yes I'm in the UK. Your experience so far is very similar to mine and the 33 days that I had to wait for confirmation were dreadful and I had a breakdown in front of my 83 year old mother telling her I was waiting for the confirmation. All the uncertainty and covid and not being able to see a health professional face to face just adds to my anxiety but I have read the replies from many people here and realise that we are not alone. If you or I need help or advice there are many people on here to give that. It would be good to keep in touch.
Hi. It is indeed a tsunami of emotion when diagnosed. I can fully understand your plight. I was diagnosed on 03.11.2015 i remember the date as it was my 55th birthday. Quite a shock!. My own personal way of dealing with this is to eat healthily, exercise where possible and read or do other things to keep the mind occupied and listen to my medical team. I chose to tell family friends etc as i felt that if i had tried to hide it i would always be dwelling on the fact that i had cll. All people have been most supportive, I explained that i did not want sympathy but support and it has panned out well. My friends were a little shy about bringing the subject up at first but in time actually ask questions about the condition. People tend to say "oh I'm sorry" at first, i would tell them there is no need to be. it is a change in my life that i need you to help me to adjust to i am still me. I have catalogued my journey on this site, warts and all good times and bad. Please feel free to browse and i hope it helps. Best wishes.
I am sorry to hear of your anxiety and how difficult it is to accept your diagnosis. You are younger than most of us and that makes a difference. I was diagnosed in 2018, aged 72, and I cycled back home from the hospital to tell my wife. I then just carried on as normal doing my regular exercise and gardening, just as I always did. I completed a post about CLL on my pensioner blog and told everybody I had it. One radio reporter said he would investigate my illness because I suggested I might have contracted it through agent orange. I used this rather nasty chemical when I trained as a gardener in the early 1960's.
The difference for me is that I spent 45 years working in bereavement, in cemeteries and crematoria. I am not 'normal' because normal people ignore their death. I had involvement with over 100,000 funerals all over the UK. The British have a problem talking about death, as if ignoring it makes it go away. I take an opposite view. The best deaths and best funerals were when people faced the reality of life, that it ends with death. It is not a fight or a battle, it is just a part of life. After all the deaths I experienced of young people and babies, the fact that I have reached 70 is amazing. I could say that I reduced the odds by staying fit, eating well and keeping a low weight. But this would be unfair on the many people who died early from sheer bad luck, from genetic issues for instance. Life, at times can suck.
What we all need to do is share our experiences. Feeling that we are somehow shielding people from death by not telling them about our illness is perverse. I was told so many times when talking about funerals that this or that persons death was unexpected. I knew that the person they were talking about was in their 80's or 90's and yet death was unexpected. Consequently, no will was written and neither had anybody any idea what kind of funeral the person wanted. This is not the way to approach life or death. This is not a way to introduce children to illness and death, not if we want to protect their mental state. My advice is to relax, talk openly and make CLL just another facet of our lives.
Hi There, I felt exactly the same for a year, not bitter, never that, all of us have to get something, but sad, yes, very sad. You will come to terms with it and be able to be positive and in fact forget all about it in time. I didn't talk to anyone, or do any kind of therapy, but I hade previously known what grief was and how long that takes to pass. This is much the same. I was Grade 4 before diagnosis. I am well, now after a year, and I still work full time, own and run my own business, even though I'm 72.
Be kind to yourself, take the time you need. Spirit of the forest is right, It just takes a little time.
Hi Dracaena,
Your post will resonate with so many of us especially so soon after diagnosis. It’s a blow like no other and we need time and support to find some equilibrium. I’m glad you’ve started a CBT therapy course to help you.
I was diagnosed 8 yrs next month and am now a year into treatment which is going well. It’s important to hold on to the immense developments in treatment that have taken place over those years which give us hope of a much longer and healthier longevity. I’m in the U.K. and on the Flair trial taking Ibrutinib & Venetoclax which is and incredibly effective treatment regime.
I know the fear of a secondary cancer is real but be reassured that few other groups of people receive a higher level of monitoring than us so surveillance helps to detect any issues earlier. Just be vigilant about skin care and have the other regular tests done. There’s no reason to be disproportionately concerned and don’t be tempted to let Dr. Google guide you on these issues. He doesn’t know individuals and rather likes the extreme and the unusual!
During this period we are all having to accept a lower level and different types of monitoring but you are at a very low stage it seems presently so this needn’t be an issue.
My advice would be to learn about your ‘enemy’ because it takes its power away and puts you in charge. Be careful who you disclose to because this can be a long long process and not everyone gets this unusual form of cancer.
Try to see your CLL as a quirk in your blood rather than an invading enemy. We don’t have to like it but we need to make peace with it and co-exist. Time and acceptance will steady your world from the shaky position it’s in presently.
And yes you absolutely are entitled to free prescriptions so pursue this once all this madness with the virus allows.
This is a post I wrote 2 years into my CLL journey and I hope it helps in some way. It demonstrates that we don’t have to like it and it really does change certain things in our life. Important thing is to not waste time with ‘what ifs’ because this new reality is ours to live positively with.
healthunlocked.com/cllsuppo...
Huge best wishes,
Newdawn
Just read your post from 2 years in, I’ll be 2 years post diagnosis in June (though spent the previous 2 years knowing something was wrong but getting nowhere). I particularly relate to the “Zestlessness” a great description of how things feel for many of us. I’m going to direct my husband to your post as he struggles with my diagnosis and I struggle to help him understand what it feels like to have CLL/SLL . I also relate to how friends react too as the time passes, if I try to indicate other than “fine” most try to change the subject.
My lovely daughter is an excellent Clinical Psychologist who works with patients who have Long Term Health Conditions. She was very supportive initially but now never asks how I am, yet she spends every working day helping her patients and being an advocate for them. She said recently (regarding something else) that her way of dealing with things is processing the facts but then just going into denial, which I think is the reaction and behaviour of many people to our illness.
I’ve found that many people go into denial about our condition FeistyGirl because it doesn’t have physical manifestations and it’s more comfortable to think we are ok.
I didn’t disclose for many years but even when I did, some people chose to avoid the subject like the elephant in the room. They don’t know how to assess the risk level from CLL because it doesn’t fit the cancer norm. I’ve had to learn to forgive them because I appreciate they just can’t process it. Hard on us though.
Glad my older post helped you 😊
Regards,
Newdawn
I’ve found that meditation really helps me with my situation, which is the same as you and I’m also 59. Regarding your prescription, you should be able to get it delivered if you’re shielding. Stay strong.
Hi I was diagnosed 13 years ago . The consultant I saw then was very uplifting and assured me that there was a good chance I would die from something else. After 6 years I had chemo (6 times at 3 week intervals) to correct an enlarged spleen. Now 7 years later I am on Ibritinib and feeling pretty good for my 82 years, apart from the lock down. Good luck Jim
I really feel for you and wish to send you kind thoughts and just mention that councilling, educating myself about CLL, in small bites, and gradually the dust settled and I began the feel like me. I used headspace app which has a cancer section, it might sound corny but it saved my bacon! I was 51 when diagnosed at stage 4 and already had multiple sclerosis and today I finish my last day of FCR. I am looking forward to the future and hope to go back to finish my honours in September, world permitting and then Masters. It's tough but I want the joy of life and by god I'm going to have it. Stay safe and maybe get a journal and just write down anything you like and see if you can figure out day by day how you feel. I wish you all the very bestxxx
Good morning Dracena. Reading your post just broke my heart.
I understand completely, and only CLL patients truly understand how it effects us emotionally. I haven't really found anyone I can confide in to explain how I feel about it, just like you. My family and friends see me as a healthy person since I am not having complications from my CLL.
They see me as a person who's life is going on normally, so it's easy for them to forget my condition. BUT if I'm being totally honest I find that's actually good for me. Since there's no way I can predict what tomorrow can bring, so I'm just concentrating on one day at a time.
I have taken a "glass is half open, not half empty" approach. I see so many handicapped and elderly people, that I'm realizing how lucky I am compared to what other people are going through.
I just have to cherish any day that I can spend with my family and friends. That's the only way I can get through this. Its not helpful for me to think about what might or might not develop because of my CLL.
I know you're reading this and telling yourself "This is easier said than done." But what's the alternative? Take it step by step.
Hang onto each day that you have a normal day. See it as a gift. It's 7 years since my diagnosis and I am forcing myself to see what I CAN enjoy today rather than what I might not to be able to do tomorrow. One day at a time, little by little.
Keep using this forum as a crutch you can lean on as a place where you can share your feelings about your thoughts and fears. That's what the people on this forum are best at. They are good listeners, and understand what you're going through.
..... but also don't forget to go about trying being grateful for each good day you have.
Accept it. It can be very indolent.
Seriously, look into the "Chris Beat Cancer" program. Ive been dealing with this for over 9 years and there is massive hope for this.
I have found many recipes, lifestyle changes and remedies. Chances are you will die from something else. And may very well be much later. Many people go to see the Lord dying with, not "from" CLL.
Admin edit; religious advice on cures removed as breaches posting guidelines.
God bless you and keep you.
Hi Vader,
While I appreciate you found Chris Wark's dietary information useful, the premise behind his dietary promotion is flawed, specifically his claim that a raw vegan diet "is a major part of what I did to beat cancer along with not doing chemo": chrisbeatcancer.com/the-raw...
Chris's cancer experience isn't relevant to us because he first had successful surgery for bowel cancer and refused adjuvant therapy - the standard process of providing chemotherapy after cancer surgery to mop up any cancer cells that may have escaped the surgeon's knife or metastasized elsewhere. By doing so, he slightly lessened his chances of survival, which were still very good: sciencebasedmedicine.org/ch...
Dracena, CLL can provide a hugely valuable incentive to improve our health that will provide significant quality of life benefits and indeed likely extend our lifetime. Sadly, we also need to be on guard for charlatans that offer false hope so they can benefit from our misfortune of having a cancer diagnosis.
Neil
Understand, thanks Neil.
Good afternoon. I'm the same age as you and was diagnosed valentine's Day two years ago. Certainly been a roller coaster. To be told the word Cancer is shattering. I only went to the doctor's as I'd had the flu and felt run down. It does take time to sink in. And like you I got angry but at others who didn't understand. Some stopped talking to me as didn't know what to say to me. But I got over this because like them I knew nothing about it. Yes I put the two together it was blood cancer but that's where I stopped. You tube and Google frightened the hell out of me. Too much old information. What I did see was that what we have does develope slowly. But the watch and wait still challenges me. My first year all moved slowly but then last year things started to increase. I was told numbers of cell counts but meant little or nothing to me. And when I asked well how big dies that number have to be to be an issue even the answer was confused some people this. Some people that. Ok so how long until treatment. Even that got a very vague reply. Seems we will all know when we know. I saw new consultant January after 6 months that's what last consultant agreed to be told. No it's got to be every two months. Then yes March I got the telephone consult which really was a waste of time. How do you feel. Have you got any lumps ?? But Corona virus meant no physical examination. I'm now told to go for a CT scan. But every other letter says stay indoors don't go out. Don't see anyone. So I asked CT unit if it was safe. To be told it's up to me if I come or not. So June is next consultant planned visit but will see if that goes ahead. But the one thing I'd day to you and I know it's the hardest. Don't worry. Simply does no good. If you wake in the morning and feel fit and well just go with it. Shield yourself as much as possible. Nothing will happen overnight. This virus will go soon enough. And just enjoy every day as much as you can. The positive things I read now are that new drugs are coming through very frequently. The old chemo isn't the first call for most it would seem. And many people live long happy normal lives with few side effects with medication. A positive calm mind is great help to the body. Stay strong talk to as many others as you can and remember your never alone. Lots of us on the same journey. All the best. John
My story is a little different. I was diagnosed with kidney cancer about four years ago. It was small and in a place that they could just do an ablation and then follow up with MRI ‘s I had been extremely fatigued which was not like me. Last October I was diagnosed with breast cancer and had a lumpectomy in December. While testing the three lymph nodes they removed they discovered CLL. And I was not surprised do to the fatigue I’ve had for years. I’m not even sure how many years I’ve been walking around with it. I’m in w&w with my second blood test due May 14. There are so many people that think this is a death sentence that I hesitate to even tell anyone. I have no idea if CLL has caused the other cancers or not and neither do the Doctors. This Covid 19 has been awful for everyone. I’m 78 and Being housebound for weeks can really bring on severe depression. Hang in and this shall also pass.
Stay well 😷
Sorry to hear that you are having to face this difficult diagnosis, most of us went through the same emotional struggle which is a totally normal reaction. After my diagnosis at my first 'well person' checkup in nearly a decade I spent six months in bleak depression -- waiting for the other shoe to fall. I didn't want to buy even a new pair of jeans because I would probably die before I got to wear them out. After half a year I realized that I still felt fine, was working full time at a difficult job and that nothing in my life had really changed -- except for that darn diagnosis. So I quit waiting to die and got on with my life.
That was September of 1999 and I have no idea how long I had CLL before then. Over the years I have had a few rocky times and now ongoing treatment, but since I am over 20 years in I don't have much to complain about. I still dread the lab results and symptoms which pop up, but try to enjoy life and do as much as possible.
A difficult thing for me was the reaction of some family and friends to my health since I wanted people to know but didn't want to become the identified 'victim' of a dreaded illness.
Hang in there, this group is a great support and source of information. Get the very best oncologist you can find (I had to fire 3 of them before I was successful at that) -- and stay in touch.
I understand your trepidation. I was diagnosed at 42, that was 13 years ago. Given mine was unmutated I was expecting treatment to begin soon afterward. I went 12 years without any treatment and I’m doing great on the ibruntinib trial. Stay strong. It will be ok
Dracaena,
Your frustration is familiar to us all, and we share in your desire to overcome.
You project a well thought and healthy perspective resistance to the emotional tsunami that follows a CLL diagnosis.
I encourage you as much as your measure determines reasonable to continue to distract the un-wanted thoughts with thoughts that produce actions having some measure of worth in your point of view. These thoughts and actions need include peaceful, relaxing, joyful fulfillment, and not be limited to the CLL fight.
I have come to realize that this strategy is no different than that which most of us used prior to CLL to produced desirable outcomes. However, the CLL influence is more personal, does not yield it's advance until subdued, and it is randomly aggressive. Much like an "enemy of war".
My CLL doctor stated in an interview, "Knowledge without judgment, is just anxiety".
I believe his statement implies that unless we take action from what we learn, we will grow anxiety. Even more so, I believe that he is encouraging doctors and patients to gather knowledge and apply it because there is a better chance that good will come of it.
I hear that sunlight is good if we get the right amount of it. I have experienced much sunlight herein this forum.
Keep up the good fight, and plan equally for the leave of action.
JM
I was also diagnosed July of 2019 with CLL/SLL, I am 57, both my husband and I were knocked sideways as well. Within 3 weeks of getting diagnosed, I was also told I had breast cancer and a cancerous spot inside my nose. Now that’s a whole lot to let sink in!!!
But, you have to be positive and stay as active as possible during these strange times. I am lucky that I live on 5 acres in the country and have a beautiful area to escape and meditate by walking. Stop, breathe and see the beauty, all will be fine.
When I was diagnosed I felt much like you. I reached out online and I found a new family that way. This forum is a safe and supportive place - so glad you found us. After 14 years and dismal genetics, I am still fine. No treatment. It helps not to "forecast" or label ourselves too quickly but to be more intentional in taking care of ourselves. That involves our physical health, our mental health and nourishing our soul.
marcyh
You are feeling exactly the way I felt when I was first diagnosed. I talked to my oncologist and he said that I was still in shock and disbelief phase. I also went through the anger phase and sadness as well. I was misdiagnosed for 5 years so I got stuck in the anger phase for way too long! I know it took me about a year to mentally grasp the fact that I had cancer. I had all the B symptoms so I think that's what finally pushed me through. I'm so sorry your having a rough time, it will pass. Don't let your diagnosis define your life! CLL isn't a death sentence and many good treatment options if you ever need treatment. Rest when you are tired as many of us have to as well. One day at a time is how I take rough days. The rollercoaster does get easier with time. Hope this helps you find comfort. You are never alone in this group. Great group of knowledgeable people who care about each other. Stay strong 💪
Hello. Yes it's disbelief, anger, sadness, irritability and lack of concentration at the moment but some days are better than others. Thank you for your post.
Your welcome. It's a big shock for anyone to hear they have cancer. Be kind to yourself but most of all have faith that you will mentally feel better with time. Our minds take time to process a cancer diagnosis, everyone processes information differently. We are here for you and we all understand what you are going through. Stay strong 💪
Sherry
Hi Dracaena - I have had a similar experience: diagnosed with CLL, aged 55, a couple of years ago. The diagnosis followed when some enlarged lymph nodes in my stomach area were picked up in a CT scan that was investigating a problem that turned out to be completely unrelated. There followed a number of investigations, and when I was finally given a definitive diagnosis, although a shock, it was almost a relief, as I feared it could have been a much more aggressive cancer.
Since then, I have been at level 0 “watch and wait” at each 6 monthly follow up. I have been largely symptom free ... I had been experiencing some tiredness, but I have focussed on my fitness and have lost weight, and now feel healthier than I have done for years.
I have told most people of my diagnosis- ensuring they understand that many people have CLL for years, without experiencing symptoms or requiring treatment. Personally, I found it easier to tell people ... after the initial shock, people adjust to the news, and you also hear unexpected stories that give hope, such as my daughter’s maternal grandfather who had had CLL for 30 years, before he died of something completely different, at the age of 97!
So, I hope you will adjust, keep positive and use this a reminder to take charge of those aspects of your health that you can control.
All the best
Hi Dracaena. I think being diagnosed during these La Covida Loca times is a double whammy. Hang in there, as many before me have said.
CLL is one of the few cancers that usually doesn't require immediate decisions and action, that gives you a lot of time to plan and learn (and worry a bit too).
I think that during this period you should try to get as many assorted diagnostic tests as you can, and find a CLL specialist you have confidence in and who'll back your decisions and answer your questions.
It sounds weird, but I think if you have to have CLL, this is the time to have it (Covid aside).
There are many treatment options available including some where many people experience little or no side efx. These modern treatments have left patients with 1) not requiring addtnl meds after the treatment period 2) with U-MRD , undetectable minimal residual disease .......this is our goal ....U-MRD.
I opted to only tell my immediate family and I'm glad I went that route. It's strictly a prnsl choice; no right or wrong answer. I'm 70 1/2 and was diagnosed at 64 and finally began treatment last October. I hope to be finished with treatment and CLL by the end of this year. Stay active, get a team you can trust together and hopefully this will be a minor bump in a very long road. Good luck.
PS ..... Forgot to mention. There is a ton of garbage and plain old bad info in the googlesphere. Here is a terrific site for addtnl info, including tests available and what they diagnose, as well as a toolkit that includes an excel spreadsheet for tracking lab results.
Hi, I'm fairly new to the diagnosis, about 18 months and it is still devastating and overwhelming. I do work and that does help a lot because it is when I'm home or at night in bed that the sadness, anxiety, fears, confusion really come in hard. This group has been a lifesaver, so much comfort, knowledge, compassion and encouragement. A number of months ago, one of the members\administrators wrote a comment that I found profoundly helpful and I keep it handy to remind myself . It goes like this( and please forgive me if I don't get it exactly right)
" If CLL robs me of my future, that's on CLL,
But if CLL robs me of my present, that's on me"
I hope you find some comfort in these simple words and know everyone here has your back!
Debbie
The way I look at it CLL is pretty sweet compared to a lot of other cancers. Odds are you will die of something else.
I was diagnosed at 57 perfectly healthy avid skier, triathlete and runner. I found it on my annual physical, When I first was diagnosed hit me like a ton of bricks because my Dad had NHL and died from complications back before all the novel therapies out there now. It took me about six months to come to terms. I am still going for blood tests every 3-4 months and watching my numbers climb but I have yet to have any meaningful symptom. Yes I bruise a little easier and my stamina is slightly down but I am now 60. I still push my body to the limits when I have the opportunity to. I believe staying focus on life and letting the Doc's handle the watching and waiting keeps me in the game. My wife kept reminding me not to worry about things that haven't happened and it helped in those early days of the diagnosis. Like Andy Dufresne said in the Shawshank Redemption "Get on with living or get on with dying" well I choose Living! Stay Safe.
I was diagnosed in January 2019. I have not had to have treatment. You should be thankful for that. Worrying about secondary cancer is not what I will do with my time. Stress can push the cll. 1/3 of cll patients wont need treatment. My blood levels stay the same. I dont even think about it much. I take adrenaplex for stress and fatigue. It's an excellent product. I support myself naturally and spiritually keeping positive is alot of the battle. I am just grateful I have a positive thinking doc who isnt all gloom and doom. It makes a difference and he happily answers anything I have concerns about with a prompt answer and I dont have to have an appointment to ask questions. I had a couple other docs but I didnt agree with them about treatment and a friend who had worse leukaemia gave me his docs name and wonderful experience. I am not going to worry about the what if. If something changes then I will deal with it then.
Hi Dracaena. I know exactly how you feel. Your story is very similar to mine. After my diagnosis (at age 50) I went through the disbelief...fear...anger and then went through 3 rough rounds of chemo. While fighting my way back from chemo, I realized that I was very lucky to be experiencing chronic rather than acute leukemia. I began to focus on my future...getting stronger, really enjoying life & getting back to as normal a life as possible. True, many people do not understand chronic leukemia, but feel sorry for you anyway. I am now an advocate for the Leukemia & Lymphoma Society and living a life of health & strength.
I wish for you a new focus on strength, health & happiness in your life. And never forget...you may have leukemia, but it doesn't have to have you. 💪🏾
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