Love reading all of your posts. Informative, helpful and inspirational. So thank you! I thought I'd be years away from treatment. Now they say it will start in January. I am feeling worried inside mostly about how long I have to live. I'm 40, and guess as I sit at my desk at work and write this. I wonder.... what the heck am I doing here! If I die in 5 years... I'll regret that I didn't do all the things I could have done etc. Just feeling overwhelmed perhaps. Sad...
Do you know what I mean? I don't want to stop working and living the same life I have cause I do enjoy it. And subconsciously it means to me that...i will live for another 20 years. if I do stop working Im accepting that I'll be dyeing young but I'll enjoy the short time I have....
I should be working but my mind is....sad.
Anita
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AM75
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Hi! I was dianogsed this year with CLL too. Mine is watch & wait (W&W). Now I call it W&L, Watch & Live! I Had a stroke 11 years ago at age 44. So doing Great from that although it took a while. I understand you being sad, but being through what I've been through I can say never give up, chin up and keep smiling. Don't get me wrong, I every once in a while have a pity party. I met someone here where I live and she was 44 when diagnosed with CLL and had thyroid cancer while going through CLL. She is on a trial that is really helping her!! She is 55 now. My motto- Let Go and Let God. . . . Help me. Oh, quit looking at the internet. . . . I felt much better when I quit that. This site is Great!
Hi Anita and I'm so sorry that you're sad and in turmoil. Why does the doctor feel treatment is necessary now? Looking at your other post I can see that you've been plagued with an allergic response. Is this part of the reason?
You're so young to have this and it's easy to see why your thoughts are on longevity and making the most of your life. But the truth is you simply don't know if this condition will significantly reduce your life expectancy. You may have decades of remission followed by new novel drugs that involve popping a daily pill. If you enjoy what you're doing, don't throw it all in believing you need to live a last ditch bucket list. You'll be skint in no time and back to normal following treatment.
Live your life with CLL not because of it. Yes, create lovely oppprtunities but don't imagine you need to rush round the world before the final bell tolls because you'll be racing ahead far too prematurely.
In truth Anita, there isn't a single 40 yr old who doesn't sit at their desks at times and think, 'what am I doing here...maybe I should buy a boat and sail round the world'. CLL'ers are not unique in that regard.
Ours situations are not massively different except I'm a fair bit older than you but I'm not thinking just another 5 years. Hell no, I'll just be getting started then and so will you!
If you need to start treatment, hope it goes well and the good people here will support you through it.
Anita, I feel the same way. I'm 35 and wonder why do I bust my ass everyday at work when I could be out there doing the things that make me happy. You can't change the shitty hand you have been dealt, all you can do is make the best of it. Who knows maybe in the near future we will all be getting that card that will turn our shitty hand into a winning one. Until then you must keep the faith and know that we are getting closer to a cure each day. Keep your head up!
I know how you feel. I have been there and am still there on a lot of days, but things are getting a bit better I think. I am 46, three kids under 12 and my life has been turned upside down. I feel broken and just a shell of what I was just a few months ago before I was diagnosed. That being said, I have to trust that what these fine people here have told me is true. The outlook for this disease isn't what it was 10 years ago...even 3 years ago. New therapies are out or in trials now with more to come. I understand you are going to treatment soon, but trust that whatever treatment you get is going to be the best for you and you will get a substantial remission/response from it. Chances are, by the time you need treatment again (IF you ever need it again), the drugs will be even better.
It's ok to be sad. If it is too overwhelming, seek counseling and help. That is what I have done. Please take care and don't hesitate to come here for answers or support.
Sad is part of the journey but hold on to your hat because you will have tons more joy and love as well. Comfort yourself and be kind to you. The thing that most makes sad linger, is beating yourself up for having it.
Cll sucks as does all the other illnesses, and side effects that may come with it. The great thing and what keeps me going is it really is just a piece of garbage I need to deal with sometimes.
I'm still allowed to laugh, be with friends and family, contribute to the world in different ways than I did before and help myself feel better when I'm sad.
You're allowed to be sad. You're also allowed to feel good. Wishing you comfort and love when you're down and hopeful enthusiasm when you're up.
Oh Anita. Big big hug coming your way. You're perfectly entitled to feel as you do. We all hope and sort of assume that we will be part of the lucky group who never need treatment or at least not for a long long time.
Please think carefully about giving up your job. If you were unhappy and didn't enjoy it then yes BUT you do. We all work for money to live but finding a job you enjoy is PART of that life. Why change it?
I know you're feeling sad but look at all the lovely folk here who have come out the other side of treatment.
Rant away,you're allowed, then take heart from all the great support here and make sure that it really is time for treatment before you go for it.
Anita, listen to all the friends on here. live life, worry yes but know you are not alone. life is to be enjoyed, ad time passes we are nearet new treatments and possibly s cure. love and prayers to all
Are you being treated by a CLL expert? If not then you need to get moved to one. If you are you should still ask for a second opinion. Have you had a FISH test? You dh should have results from that if you shared the results others who had somewhat similar profiles would share. If you have done all of that is there a suitable trial. I am on a trial o for something else and I am not the trial because doing so gives me better treatment, more checks., more people looking at my case most of them global e players in their field. I do not want to give false hope here. The need for treatment might well be real. Some people have smart CLL and if that is the case it might need to be brought to heel promptly. But someone might be making a mistake. Expert and 2nd. Opinion matter a lot.
Second a tale of caution: I met another CLL’er he had had a very poor prognosis and considering 5 years his allotted span. He is now 8yrs into CLL and still on W and W. This is an unpredictable disease.
Third: been reading all the prognosis information like the one that tells you have so many years you might have at a certain stage? I know those and been there too like mostly everyone here. They are history. They are drawn from figures over a time period decades age and treatment has, and is, changing.
I have seen oncologist here in London, Ontario. Because my WBC jumped from 37.5 in February to 105 in Oct. and w/the very swollen nodes everywhere! My neck, stomach.. they said that they didn't want to wait any longer. I do not believe I had the FISH test Les. Need to find out what that is...
what I can say is THANK YOU EVERYONE!!! After reading all your words of comfort, I feel better. Just moments sometimes gets me down. I turn here and poof! I feel better.
I will ask my oncologist about the FISH test. As for second opinion my earlier results in June was sent to the Boston Dana Farber Cancer clinic... the doctor provided the same findings in that if my WBC increased any further ( at that point it was 67), that treatment should be discussed. Not even 1 year since being diagnosed and here I am around the corner to treatment. I know the doc's had no way of knowing in Feb. that my WBC would increase so quickly while my RBC would decease the same speed.
Well I guess I'll try hard to enjoy the rest of the year and NYE. I'll deal with the treatment as it comes.
I know that we each walk our own path and have our own challenges but my heart goes out to you as you navigate it with so much of your normal life span ahead of you. One of my early thoughts when I was diagnosed was that at least it happened at this stage of life and not when I was younger. You don't even have that comfort.
Sad seems entirely appropriate. I don't think sadness is a bad thing, it helps us know what we value and what is important.
Won't say a lot as so many others have contributed very good ideas and caring thoughts. We are there for you and we understand. Please remember we all have to go somehow and some day but don't miss your life worrying about dying. Live every day to the fullest and you will beat the stats that are outdated and outpaced by new treatments. And you will have many good years I am sure. Chin up!
My partner is 38, looking back he's had it since mid 20's. He was the same as you, and I said to him, get on that pity bus, feel sad, mad, angry, get all the negative emotions out of you, when your ready, press that bell and get off at the next stop, it took him two weeks. It's a natural feeling and your allowed it and so is anybody else.
Once he stepped off, he realised that he has a blood disorder like diabetes etc something he will have to deal with forever. Being diagnosed so quickly and needing immediate treatment, has awakened us, it's shown us how precious life is and nobody is promised tomorrow. We wrote a list of all the things we have, have done, are grateful for, and realised we have lived, we have more than we realise etc (this comes over time this bit) Now we have an affirmations list and we are going to tick things off etc lol.
He has decided not to track his CLL, he wants to blast it away ( Started Monday) hear the positive news and then go into LLL not WW lol he doesn't like watch and wait, doesn't want to spend the peaceful years of being in remission and tracking, waiting for the return, he says this part makes him worry and ill thinking of it. So he isn't doing it. ( I want to track it lol) oh LLL stands for, live, laugh and love.
So we are all different, but it's not over, it's just a wake up call that makes us realise life can be more great, we can create more memories, appreciate more than most, even the simple things.
Hi Anita , everyone is so caring and kind as we all know that feeling of sadness. You need to pick yourself up dust yourself down and positive thinking. I'll be wishing and praying all will go well in Jan and wait to hear ❤️
Hi Anita, Sorry to hear that you are so low at present. I was diagnosed with CLL 8 years ago now and on W&W every since, though I am told I'll need Chemo this coming year. Before I was ever diagnosed I felt like you and took myself off to University as a part-time student, aged 55, and studied for a degree. Aged 59 I got a 2:1 and the high of receiving a degree felt so good, for someone who left school at 15 with no qualifications and barely able to write. So you don't have to complete a bucket list or get a boat to sail the World, just try something new. Since my diagnosis worrying is the hardest part of the illness to deal with and I have no answer for that, except to face it head on and work through it. Doing this I've found that my condition is rarely as bad as I thought, as many on this site can testify to. Good luck and try not to worry. This from someone who is already worrying about my next hospital visit in January, but we all do it. Is this the time when it all hits the fan, how long have I got etc. etc.. So don't worry unduly and the members of this site are such a great help with advice and knowledge going back years and I'm sure that has help me on many an occasion.
Hello Anita, don't be too pessimistic. When I after DX was worrysome and downhaertedly talking to one of the great Expertes (in Cologne) and mentioned, that life insurence must be checked soon, he answered clearly, that the improvement in research and drugs will give most of the patients with CLL and normal lifespan. That happend three! Years ago. Since then, everything has even changed to the better, newer drugs and much more enthusiastic developements.
Therefore, try to get rid of the bad feeling and accept your illness, it is treadable!!!
Be realistic instead of believing too much and take your life in YOUR own hands. Docs and drugs will assist you but YOU must live and decide.
Hi Anita. The sun WILL come out tomorrow! This is a very exciting time for blood cancer patients - there are many new, promising drugs being developed. Please enjoy life to the fullest - spend your time on those things that are important to you.
Hi Anita, your feelings are totally justified, the reality of needing treatment was difficult for me to accept too. I am age 40 (diagnosed 2 years ago) and just coming to the end of treatment (FCR). As I look back, I am appreciating how unwell I really was, despite all my efforts to continue with life as usual I can see now that I was functioning on a very low level. Although I haven't quite finished treatment there is a big difference to my wellbeing. Try not to see treatment as a set back, but a catapult back into the life you wish to have.
Lucy, 1stly thank you for your message. How is your treatment going? Any advice on what I can expect when I start... common side affects that the pamphlets don't tell you?
Anita, everyone thought that because I was young I would sail through FCR, but it could have been worse. Most importantly I have been very lucky not to have had any infections or hospital admissions (yet! - cycle 6 starts Monday), but I have felt very unwell during and latterly beyond chemo week. 3 of my cycles were delayed by a week each time due to low neutrophils. The Rituximab causes your neutrophils to drop, so they have to be at a safe level before each treatment. I gave myself injections of GCSF to boost it - this is really not as bad as it sounds, you only jab a fistful of your tummy flesh. I managed this and I can't look when I have a blood test!!!
I have been unable to work, which I wasn't prepared for. From everything I had read I had expected to be able to go to work some of the time. Perhaps if I had a desk job I may have managed to attend work during weeks 3 and 4 but I work in healthcare - it is very individual and until you start treatment you won't know. I have experienced a range of side effects (all well documented) which make me feel a bit miserable at the time, but they don't last. Since cycle 4 I have been experiencing hot flushes which really impact on my sleep (this was not in any pamphlets!) I have been assured it is the chemo and not early menopause.
During treatment it is really important that you drink lots of water and keep your skin moisturised. Pace yourself and by all means have a nap but try not to take to your bed, keeping moving (little & often) helps the 'cocktail' circulate and flush away the CLL cells.
I hope my ramblings are helpful to you...It is important to remember that my journey is not your journey, but it always helps to be prepared.
Thanks Nic. I hope to discuss with docs on Monday. My quality of sleep is rubbish and I'm driving my husband nuts - duvet off, duvet on, duvet off, duvet on...!!!
Do you get a massive sensation of heat, then sweats? I just get woken up and briefly feel a bit hot but massive sweats. In the day, it's not so bad. My GP thought it was significant that I wasn't getting massively hot. Hence Amatriptaline and not HRT. I'm definately getting more sleep than I've had for ages. Good luck on Monday. Let me know how you get on. X
I get a massive sensation of heat, then really clammy, sometimes my face and neck are really red. I work with a lady whose hair gets soaked, I'm not like that. Only a few in the day, up to 10 on a bad night. No period since cycle 4. Part of me hoping it is the change, otherwise I'm in for a hysterectomy due to a large fibroid that was only discovered when I had CT scan. Such a magical time!!!
Thank you for giving me a true picture of what it "could" be like. I appreciate that so much because most of my support from family and what I read " doesn't make it sound bad". Yet my instincts and being on this site gives me what I feel is closer to the truth.
I have been w/my company for 11 years and 2 months ago locked in a new position in my home town of London so that my bf and I can finally live together. I too "think" oh it will be fine.. I'll go right back to work each day. So again, preparing for the unknown is so hard.
Reading message to me, reminds me that I may not be working right away when treatment begins. Either way, I thank you for sharing ...helps to keep me realistic. My thoughts are with you Lucy, and hope you will kept me updated.
I'm so sorry that you feel sad Anita. I can understand that feeling completely - as does everyone else on this site. And we are all here for you to vent, rant, or just share your fears. I know when I was dx in Feb. that if it was my 'time' how would I handle it. I was so afraid that I wouldn't be able to handle it or be dignified enough. But I do like everyone else - I started looking at the positive - or trying to. This site helps immensely. Keep coming back here since we'll all be here for you.
Im newly diagnosed and this site is a life line. Whilst i dont know what im going to face im beginning to take the view why worry about something you cant change. Thinking positively can help and who knows what the future holds. Knowledge is power and hopefully with the support of this site and the kind people on it you can face your future knowing you are not alone. stay positive.
It's really good you have spoken about how you feel. It certainly helped me when I felt very low a couple of months ago. You're not alone now and nor will you be through your treatment.
I felt so guilty and ashamed about feeling down during treatment and this group piled in and made me feel that it was normal and ok to feel like that way. And then I felt much better.
Anita, it's about 3 days since you posted - 3 days to reflect on the replies you have received - and I wonder how you are feeling now - not that sadness goes away overnight ....
but whatever your present thoughts - don't act in haste - don't burn bridges too soon. Panic and sadness often set in when treatment is mentioned partly because we become more aware of our own mortality. But should you require treatment soon (and you do need to be asking "why and what) it can offer you many healthy years, allowing you to continue the life you already seem to enjoy - as well as time for those things on your wish list. (I wonder what they are?)
There probably is no man or woman who has roamed this earth who has not wondered "how long will I live?" So don't let this thought distract you from the joys of today and hopes for tomorrow.
Re-read Newdawn's post - it's so true and beautifully put - and if I was in my 40's and wealthy - perhaps I would buy a boat and sail around the world - but I'm not. Instead, I'll continue enjoying what I do, with those I love, nomatter how mundane, for however long God gives me.
Hello field meadow, I feeling so much better. Posting my thoughts in that time was the right thing to do.... after I read the replies.... wow, I love the support!! When I read Newdawns post... well as you said " beautifully said". It touch me and I realized that I was just panicking because of the news I received. It was a nice November day out and I'm sitting in my cubicle... daydreaming. You asked if I have reflected over the past 3 days? I did... my boyfriend and I had been talking about taking a trip, we stopped talking about it and booked a trip to Cuba! 1 week in the sun in the 1st week of Jan. Sooo excited. I realized I have to stop daydreaming... and make time to do some of the things I dream about. To keep doing what makes me happy... work, seeing my family, going shopping, hanging with friends, reminding my boyfriend how much I love him and taking time for me.
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