I'm having a bad day and thought you guys could possibly be the only ones that would understand.
I have posted before - I was diagnosed May 2016, a 53 years old healthy lady. I chose to tell immediate family and 3 others.
Anyway, I'm feeling lousy today ( we are currently sitting on 37 degrees Celsius here in Queensland) . I've had a lot of pain in my left leg lately from the hip right down to my foot - it doesn't feel muscular , it feels like my bones are on fire. When I lay down at night, that's when it really starts.( so quite a few sleepless nights) . I've also been more tired than I though was possible and suffering from an upset tummy and bowel. I rang to see a doctor today and they're booked out , the receptionist asked if I was unwell and when I tried to explain that I had CLL , well, that was the last straw - I broke down . I tried to explain to my beautiful supportive hubby who was mopping my tears that I HATE having to say that I have CLL every time I need to go to the doctors. It just brings it all flooding back - the uncertainty of my future , the sick feeling I get when I feel something's not right and I think "this is it, it's starting" , it all just got a bit much.
Not to forget my "super supportive friend" who says that we all have to go sooner or later and that nobody knows what their future holds! ( just for added benefit she did some Tarot cards and she happily told me my "death" card didn't come up so I should be ok!!!!) - with friends like that eh???
Anyway, I'm still waiting from a call back from the doctors as I type.
I know today is only a hiccup but I had to get it out there.
Happiness and health to you all 😊
Written by
Jackim
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I was diagnosed last Sept at age 57. and believe me there have been plenty of ups and downs, but you can't focus on the bad feelings. Think of the good things in your life and focus on those. Whatever you like to do, go out and do them. Don't think about CLL. It's a chronic disease that we happened to get. It moves really slowly and a lot of people don't ever need treatment. Medicine has made a huge advancement in treating CLL so if you do need to be treated, it will be so much more successful. CLL has taught me one thing in life, and that is to live for the moment. Stay focused.
First and foremost Jackie, it is good to cry. Young, old, male, female, crying is ok and therapeutic sometimes. Glad you have a supportive hubby. Remember no one wants cancer but as my specialist said it is one of the better ones to have. Hang on in there, will keep you in my prayers
All of us can relate to what you are going through. As I have stated before, it's like a roller coaster with many ups and downs. Try not to get sucked into the black hole of despair. Look hard for the sunshine. It's there. Give that supportive hubby an extra hug. He'll continue to help you with the fight. I've just started Ibrutinib and it's much easier than the chemo I've had in the past. Treatment has come a long way and is still evolving. Chin up. You're stronger than you think. Now, get in to see a specialist right away. Kindest regards. Sally
Sorry you are feeling unwell. I know what that heat is like. We get it in the summer in Ottawa and that combined with your other discomforts is enough to make you worry more about your CLL. I minded our very hot summer and felt off a lot this year in the heat.
The question is do you control when or if your CLL is getting worse or not? The answer is no for all of us. I believe in God and I worked in a hospital for two years and the people who are supposed to go often walk out after a bad accident and others come in for a minor operation and almost die. Whether u have faith or not u still can only control eating well, getting exercise and trying to stay positive and live life. I have found (and it was my one year anniversary of diagnosis Feb 1) letting go and trying not to control CLL really has allowed me to live with CLL and not be governed by this watch and wait for the bogey man (CLL) to get worse routine. I tell people readily that I have CLL. It isn't a secret. Own it don't let it own you. A different perspective for your consideration.
I had breast cancer 30 years ago this past January. I survived. In 2012 I had my annual mammogram, which resulted in a call back for another one. This resulted in a biopsy at which time I got a 5PM phone call from a radiologist I didn't know who bluntly told me YOU HAVE CANCER. He couldn't tell me any thing else except he was referring me to an oncologist. I understand your frustration, tears and being scared. On top of that, you are having pain from an unknown cause. I had to wait 30 days for my oncology appointment without knowing what type of cancer I had. That is just shy of 5 years. I had 6 months of chemo, with remission until April 2016. My doctor said I could wait on treatment or I could try a new drug, Ibrutinib (Imbruvica). After financial assistance approval, I started the drug in May,2016. My lymph nodes that had enlarged are now almost indistinguishable. We all have our days when things look hopeless and we feel bad. But there is definitely a light shining for us. My prayers are with you for a better tomorrow and many more tomorrows to come.
Hi Jackim,most of us have been there and its not nice is it,take heart from all our friends on here,when l was lst diagnosed l really thought it was the beginning of the end but there is light too,trouble is every time we get an ache or pain etc we put it down to this awful decease and its not always there isnt hardly ever a day go bye that l dont think about the letters C L L but it's been running around my body for 11 years apparently still on W&W fingers tightly crossed.l wish you a long and happy life,love and best wishes from Maggie x
Hi Jakim, and I'm sorry you're feeling so unwell and vulnerable. I also sense you're feeling slightly guilty about feeling that way and wondering who and where to take the fear. Because essentially it's fear you're describing. No platitudes or silly predictions from well meaning friends will ease that so I'm glad you came here.
I don't know your staging or where you are on the CLL journey but hear you describe yourself as healthy which is good. This episode of feeling very unwell has obviously intensified your fears and brought the reality of having CLL into sharp focus. I totally understand the 'oh it's starting fears' you've describe. Combine that with discomfort and sweltering heat and even the strongest person begins to lose their firm footing.
Not everything is CLL related Jakim but everything becomes CLL related because it emotionally underpins everything. You could have sciatic pain if it's from your hip to your toes and that can affect your tummy and bowel. Only your doctor will know but it doesn't mean the CLL is on the gallop. It means we are still human and suffer other things too.
I identify so much with what you've written today because I've got the same leg pain and have spent most of the past few days hooked up to a TENS machine. I know mine is sciatic pain from spinal stenosis. Constant pain makes us question things more and it's a feeling I've had many times lately. Like your husband, mine feels the same frustrations at times because sometimes it's only ourselves who can find the inner resolve to cope. And you will! The first year is tough and saying the words is painful. I remember breaking down telling the optician!
So see your doctor, get this specific medical issue under control and your world will start to steady again.
But don't ever be ashamed of your feelings or fears around this because their natural and need to be heard. Sometimes just 'looking on the bright side of life' just doesn't cut it no matter how sunny it is out there!
Hope you'll soon be feeling sunnier inside yourself and hope you get the problem sorted.
Dx in 2000 first treatment in 2005 remission for 9 years second treatment in 2015 in remission again enjoying friends,family,holidays and golf!
That's my potted history. Yes there have been days when things get on top of me too. Particularly during the treatment. However having lived with this condition for 16 years I can definitely say that it's not the end of your world!
You will see numerous stories on here of patients who do not let cll define their lives! Amazing stories by ordinary folk who have firstly accepted that they have a chronic condition then decided to get on with their lives. Many fundraise for charities , many act as mentors, many volunteer to assist on sites like this despite being at a stage where they are pretty poorly in some cases or on current treatment yet they still do not let cll define them! Do they have bad days Oh! Yes!. Will they get through them Oh! yes!
Just like you you this will pass!
In respect of your leg it sounds to me like sciatica or a trapped nerve which can be pretty painful I know. But you see not all our ills are down to cll. I know it's probably the first thing we look to blame ,I've done it myself many times! But then I'm no doctor !
You will come to accept your condition as being part of the things you need to take with you on your life journey. It's like being diabetic or having some other incurable condition that goes through life with you. There will be ups and downs during your journey but it shouldn't change you! It's just part of your life now!
Great strides forward in treatments including the new non chemo treatments are happening right now! This disease can be controlled by great medical interventions and by positive attitudes of us the suffering patients.
My view is to make cll work for you!
After 16 years my general practitioner team have it flagged on my file so I get some priority for appointments. They also know I am knowledgeable about my condition so much so that when medical students are being trained I am asked to visit and discuss the condition.
My hospital consultants are all (5) known to me by first name and visa versa I am treated with respect and discussion always includes the most recent developments in treatments so we can prepare for if and when it is needed next time. Many of the nurses (although they change over the years) know me and take time to say hello even outside of the clinic.
So in effect I have taken control of my condition and feel part of the team who look after me,probably the most important one really.
So whilst all this is going on I'm getting on with living my life the way I want to. Safe in the knowledge that I'm covered.
This has taken time,of course, but it was a conscious decision not to let cll define me but for me to kick its a**# to get to this stage.
Don't let it bring you down Jackie you are more important than that!
You are lucky your gp takes you seriously. Mine doesn't and disregards my CLL. Getting harder to have an appointment in the UK and I was told off when I was really unwell and had an emergency appointment. Can't win.
Sorry to hear you are having a bad day. I don't know if this will help you but I talked to my doctor about the stress of explaining to the receptionist & different doctors every time I contacted the doctor. He put a flag on my record so when I call & they pull up my file I have to get a call back or appointment with one of two doctors who know my case that day. Now I don't have to explain every time I call. Worth a try at your doctors.
Hello Jackim.....I'm so very sorry that your not feeling well.
I can't add to the very wise words written by those ahead of me, but i am thinking of you, sending positive thoughts your way.
We have just been through a similar episode with my husband, who has CLL, diagnosed a year ago. The humbling lesson we learned through that week, was that even though he doesn't want to say "I have CLL", it will now preface any conversation he has with any sort of medical professional or their staff. And next time he sees the GP, he'll definitely be following the above advice and have his file flagged.
Take care, and I hope you're feeling yourself soon!
Sending you best wishes and blessings. I'm a bit further down my w & w journey and pretty healthy but know that the time I've felt most upset and vulnerable was something purely physical - a broken kneecap which meant I was very dependent on others because initially I was immobile and I live alone the majority of the time. Thank heavens for phones and good friends and family!
That tummy upset could be all sorts of things - including being really stressed.
I do hope you are beginning to settle a bit emotionally and that your doctor(s) are able to sort out the physical problems soon. Take good care of yourself.
Hi Jackie...I'm in Queensland too...and I empathize on every count there. I'm so glad you shared your thoughts. Your story reminded me of my first 'cancer' visit to Brisbane to face that dreaded barrage of tests to determine the type of leukaemia etc. I don't think my beautiful husband had slept in the week leading up to the trip. After driving for about 8 hours, we arrived at the apartment complex in Brissy...then promptly got lost in the carpark, searching for the right floor. I went to the reception to ask for directions to our apartment. I couldn't understand the receptionist's directions. The more I tried to concentrate on what he was saying, the more confused I became. It was demoralising...and the tears flowed. Poor guy didn't know what to do. Pretty funny when I look back on it now...but certainly wasn't at the time. CLL/SLL is the strangest thing. As John Denver crooned, 'Some days are diamonds, some days are stone.' Like most of us I imagine, we prefer calm sailing and certainty - oh well - we do our best. And how lucky we are to have beautiful support in our partners.
Love to you fellow Queenslander. Bring on some cooler weather. Wishing you calm sailing. Jules xxx
I was diagnosed on November 28, 2016. I had gone to my doctor on November 10, 2016 for my annual physical - feeling fine - only to find out I needed to see an oncologist/hematologist due to a high white blood cell count. I went to the oncologist/hematologist on my own - thinking it would be nothing. When he told me I had CLL, I too was stunned. Since November 28, I have been trying to think positive thoughts - say positive mantras - and take the time to try to gratefully cherish every precious moment of every precious day. I have been battling a head cold/chest cold off/on since January 15 - and I am feeling a little down from the cold/cough. I have accepted the diagnosis of CLL as a wake-up call for me to be more grateful for the blessings I have in my life. By focusing every day on the blessings I have, it helps me not to focus on the CLL. I am spending more time with my hobbies - such photography and writing - and cooking new recipes (great cookbook - The Cancer-Fighting Kitchen). I will keep you (and all of you who are fighting CLL) in my prayers. Judi
Me again. the more I think about your fire like symptoms I would go and see a physio soonest as well. it sounds very similar to when my back was at one of its worst times in 2008. i had let it go and my physio was really upset with me. Try and see a physio who has qualifications as a manipulative specialist. I don't want to diagnose but I really think you need to have an assessment. The weakness and fatigue could be from your back.
I totally understand how you feel. I was diagnosed in Jan 2016 at 49 years old. I have 3 young kids and was devastated.. still am in a bit of shock but now that I understand the disease a little better it's not as bad. I was told by several doctors including a very good CLL specialist that the chances of me dying an old man from something other than CLL are pretty good. There have been some unbelievable breakthroughs in treating this disease in the last 3-5 years and more on the way. When you need treatment you will have lot's of good options. I was also told by my CLL specialist he was confident there would be a cure within my lifetime so that is very hopeful. At the very least I'm sure it can be managed and I will indeed live a happy fruitful life and one day meet my grandchildren. I cried a lot of tears for a grown man in the first 6 months....and that helped, my wife and my family were always there to lift me out of my gloom, I recommend reaching out to your loved ones for support, it can be hard to be alone in your own brain sometimes so surround yourself. at least for me that helps, although I keep my young children out of the loop for now. I have lots of hope! Yea, it does suck but it could be a lot worse and it is a manageable disease. Every day is another day to move forward in life, embrace the good and joy life brings....worry is a complete waste of time and it doesn't change anything, it only robs you of your joy, so "don't worry be happy" this community here has also been really helpful to me, being able to read about the others in the same situation and to learn about this disease. I wish you well from beautiful Portland Oregon.
I was diagnosed January 2014 and am in watch and wait and healthy most of the time. I also have times when I get the symptoms you are describing and do not know whether it is CLL related or something else. I seem to have to eat healthily, exercise regularly and put fun things in my life and most of the time I function OK.
The first year for me was a tough one, even though I understood the meaning of "chronic". I was up and down, my son said "a different person". Part of the process is sadness and fear, my GP said this was "part of grieving for the person I used to be" and I found that helpful. It was OK to be low, and the lowness was not all the time. There is a lovely post from Newdawn about the loss of "zest" that we feel.
My son now feels I am more me, perhaps a different me. I find the information and support from this site invaluable. There is no where else I can say exactly what I am feeling.
I continue in watch and wait and stable. When I get unwell I still access worry but I really see the beauty of the world once again. By the way I live in the UK and it is grey, rainy and very indoor at the moment.
Hope all goes well with your appointment. Take each day as it comes and really take care of yourself.
So so understand ..I call it a wobbly day! Did the same last week when I rang to book a massage and has to explain about condition and the fact that I was recovering from chemo...saying it out loud makes it real ... cried like a baby.
Yes! I can feel where you are coming from. Some days you just feel like everything you do or your own self it is all just in the crapper! Seems like when you are not up to par your emotional status mirrors the physical status. When you can't rest it lets everything else fall apart also. Just remember that the new treatments that they have are well advanced and helping us to live longer and better. Not to say that some days with ibrutinib are the greatest but we know that our disease process has been "remissed" and almost into a remission of sorts, and research is confirming as it goes along that longevity is being achieved. Now if they could just fix the doldrums we would be better too! hang in there.
Hi. the fact that you have posted this may relieve your worries a little as Its always good to have a rant and clear it all out. You have every right to feel the way that you do. Its the "why me?" scenario, believe me most people in this family think exactly the same at times. Sorry to hear that you are at such a low ebb. On the positive side your husband obviously loves you very much plus you have very good weather (its currently 8 degrees here in Lincoln England). Keep your chin up the best you can & best wishes.
I think everybody on this forum knows how you feel Jackim. I know I do. I'm not sick yet but I try to feel every node in my body every night when I take a shower. And if something hurts I, too, wonder if 'this is it'. I've been married 50 years last year but my husband doesn't seem to grasp that I have cancer. I don't know if he's in denial or doesn't want to know. I'm so glad that you have such a supportive hubby. We all need that extra support.
Hi I have had similar problems getting an appointment and like you I have hit a real downer. I just can't face having to go through it all with a new doctor. However I did manage to get a phone consultation with my own GP and felt a lot better, although I do still need to see him in person.
Since speaking to him, I have been trying to get out every day although it's freezing here and I find it helps just to get out of the house.
Maybe find a handy beach nearby where you could dangle those hot sore legs in the sea? Can I come too !?
Jackim I've just read through all your lovely replies here God I feel better ! Its so hard ... So damned hard !
My tooth fell out last week (incisor) Pretty damn noticeable - I was a bit down as you can imagine however NOTHING to do with CLL ! It was a 'baby' tooth that had decided to hang on in there for nearly 52 years ! - As previous X-rays had confirmed there was never a replacement ? Strange how the body works .. Thank fully no implant for me any more ! Just a good old fashioned denture with a great lady dentist who showed so much kindness and understanding when explaining and discussing my now 'new' treatment.. Sometimes you can find some very 'strange' personal positives with this 'condition' that brings out the very best in the human nature
I sincerely hope you are feeling a bit better Jackim and your pain and the heat has subsided plus you've found that palm tree and hammock !
Kind thoughts and good wishes to you and yours - Juliette x
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