There must be many of us on this site that are fortunate enough not to have required treatment for our CLL yet. However, that does not mean we do not experience a range of symptoms.
Tiredness
Breathlessness
Swollen Lymph Nodes
Night heat/ inability to regulate body temperature
Night extreme sweating
Uncomfortable Tummy
Frequent infections that take ages to heal
I’m sure there are more, for myself I’d add skin liable to spots, but I can’t be sure that’s not just me.
How do you cope?
For myself, I go to the gym 6 mornings a week, as I find that doing so lifts my energy levels and makes me feel more positive about myself. I like to monitor and keep up to date with this site, to try to educate myself, thanks to excellent information shared by those far more knowledgeable. Also like to read and share in posts, and others’ experiences on this site as CLL is not something I share with most people.. The rest of the time I ignore CLL, try to accept the limitations and live as positively as I can.
This question must have been raised previously, but I'd be interested in hearing how others are coping.
That's a really good question Bub, thanks for raising it. Yesterday I felt wretched and thought of posting something along the same lines.
I'll tell you the main problem I have in coping sometimes (because generally I do ok), is the chronic nature of the condition and the fact that I can't see an end to it just a deterioration. I'm on W & W and I'm never quite sure what's attributable to CLL and what could be a totally separate and largely unrelated illness.
My joints seem so painful and inflammed at the moment at a kind of systemic level. Not just the typical arthritic ache somewhere but a feeling that everything hurts from my hands to my feet. And I know so many of you out there with various forms of arthritis will understand that.
So when people say to me, 'hope you'll be a lot better by tomorrow' I think, 'I'm not sure I'll ever feel totally better again!' And I'm not a defeatist person. It just seems like reality. Maybe I see lack of total resolution as the main issue?
So how do I cope? I'd love to go to the gym as I used to but any weight bearing exercise, cycling, running etc. would be excruciating for me. Swimming is the obvious answer and one I keep promising I'll take up again.
I probably cope through the love of my family and friends (as cheesy as that sounds). Music, cooking, reading, even mindless tv can be a diversion and a comfort (but why do I see cancer so much more in story lines these days?).
And because I haven't disclosed my CLL generally, I can just be me with others and I have to work through any issues because they don't know and wouldn't 'cut me any slack'. It means I can't moan because I'd have to tell them and that's good for me.
Oh but the heat! The wonky internal thermometer situation is a nightmare. I swear people could toast their hands holding them next to me at times!
So many little, irksome things. And yes the little spots that suddenly appear these days Bub, I get those too and I'm sure it's due to perspiration. It's not a pretty condition is it?
And is it ok to say, 'actually I'm not coping?' I'm pretty resilient emotionally but I appreciate that there are people for whom this is an ongoing horror story. Particularly those with additional disabilities, worries and other challenges.
I suppose just writing this has been one of my ways of coping. I'm interested to know yours. Please share.
I think we all know that this road is never ending, but as I've never been in your situation I can only imagine how very hard it must be. You describe it as horror, so I'm guessing that you are finding it particularly difficult at the moment. It would be totally wrong of me to go on when I know nothing of your situation, and can offer nothing but heartfelt wishes that you find the means and the strength to cope with whatever life is throwing at you.
Hopefully some of the posts from those who also suffer on this site, will at least help you in knowing you are not alone.
I'm glad to hear that W&W is less of a problem for you now, though I'm sure that Peripheral neuropathy is awful to live with. How does it (the CIPN), actually affect you?
Strange that we tend to use the "W&W" phrase just for people who are pre-treatment, because as you say, after we've had treatment, we have to go back to watching and waiting again. And maybe we're watching even more apprehensively then, and waiting for possibly worse things.
O dear, sorry to sound so negative. Actually I'm not that negative most of the time, and usually try to put CLL out of my mind and enjoy life while I can.
The Peripheral neuropathy affects the sensations I feel in my legs and hands.
I have a feeling of heaviness, burning, pins and needles. I also have sensations, such as a feeling of warmth or burning when touching something cold.
The lightest touch or pressure feels uncomfortable and painful.The pain is like electric shocks.
The Muscle weakness in my legs is so bad I can now only walk about two meters so I have too use a wheelchair. The muscles in my legs have lost strength because of no stimulation to the nerves.
I feel my body isn't doing what I want it to. My sense of where things are around me are less certain. The nerves that control the bowel and bladder (autonomic nerves) are also affected.
It's natural to feel isolated and frustrated if your symptoms are severe and causing changes to your old lifestyle. I know many people feel angry, resentful or anxious.
It seems funny to me that I walked into hospital for my treatment one year ago and left in a wheelchair.
I think these are all normal reactions and part of the process many people go through in trying to come to terms with side effects caused by treatment.
Thank you so much for sharing, hope you don't mind me joining in but I was debating whether I could ask the same question as I had no idea of the effects being endured. Only the person going through it and those who share the same symptoms really knows how bad it is. I think I'd be feeling pretty angry and isolated, facing this struggle every day.
Hopefully it helps, even just a little bit to share with others, and that you england58, and you Cllcanada who share so much feel valued and not so alone.
Thanks for explaining all this, England58. It's helpful to know the down-to-earth realities of your situation... I'm sure it's what none of us would expect - to walk into hospital for treatment then leave in a wheelchair! It sounds like it's not getting any better for you, even though it's been a year since your treatment?
I never realised that chemo-induced peripheral neuropathy could have such devastating effects. I guess that yours is "autonomic neuropathy" - (which Cllcanada is so thankful he doesn't have, though his motor neuropathy sounds bad enough).
I wonder if the time will come when we'll have CLL treatments that don't mess up so many people's lives...
Meanwhile, we keep hoping and make the most of each day,
Paula
P.S. to Bub - Interesting that you were thinking of asking the same question as me, re actual effects being endured. I used to be a District nurse so it's probably more my style to get down to nitty gritty practicalities about health stuff.
I too suffer from motor CIPN, to the point I could no longer walk. While it is improving, progress is slow. But I'm so thankful I don't have Autonomic neuropathy. Small mercies... I no longer watch and wait... I enjoy everyday to the fullest!
Being more or less housebound ...... Hemeralopia - Tinnitus and chronic pain, which makes me immobile ( ygtgo you gotta go oww ! ) it can be difficult at times, especially as now, the long dark nights here in Scotland are creeping in along with the ' flu etc, season about to begin.
So it's now time for buying the new thermals, base layers, and fleece lined slippers etc.....
The hardest time is obviously the increased chance of infections, and the difficulty of overcoming them, but more commonly it is the fatigue, which seems ridiculous, when it is brought on with so little effort. ( Death by yawning )
My passion now is my music and dvd collections, which have got out of control, but I do miss the company of workmates/friends, and especially my pool team mates, oh and I don't enjoy the beer/ dark rum any more, its not the same without a pool cue in me hand .....
So being on watch and wait, means for me, staying warm, trying to stay clean from infections, doing light exercise, and becoming a cryptic crossword geek ......
I thought I'd responded yesterday but must have pressed the wrong button. I read the posts Neil kindly added links to, and have gone back to read some of the posts you have all written, although I expect I'll uncover some more. I'm always uplifted that despite how bad it gets sometimes, and yes it does get bad, you always remain upbeat. It makes me feel that if you can do it, then so can I, so there it is, your posts and the posts by others on the site are a part of my coping mechanism.
Thanks Bub, and thanks for starting this thread - which keeps growing in different directions. As you say, just posting here and reading each other's comments, is part of the coping mechanism for many of us. Enjoy your musical day.
Thank you, I have also had "uncomfortable tummy" and have been asked to go for an endoscopy (camera up inside you) on Friday, I dont think this is necessary but my GP said she advised it. Any help on this in the next two days would be deeply appreciated.
What a lovely name to conjour with. Hopefully those who may have more knowledge than I can offer more help. What I can add is a neighbour, and a cousin, have had this investigation and both said it was nothing as bad as they had envisaged having the actual examination. Hope all is well.
I too have had both ends inspected and was glad that I did. The colonoscopy was the least pleasant of the two.
From my experience, the worst is the preparation - trying to down all the clean out solution. The first mouthful isn't too unpalatable, but I was thoroughly sick of the stuff well before I finished drinking it all. And then it starts to work and work and work... At least you get a good run for your money! (Hard to believe that people actually pay for cleansing treatments!!)
I was mildly sedated during the procedure and initially found the internal video interesting until the world faded away...
As you can see, you've got many of us thinking of you and wishing you the best. I'm pleased you've proceeded with this; personally I'd prefer to know what's the issue rather than remaining in ignorance. Hopefully you'll join the vast majority where nothing is found amiss and if not, the sooner the cause is found, the better the outcome. I hope you don't have to wait long to know what, if anything, was found.
I've had an endoscopy (tube down the throat) in the past and was partly sedated. My husband had it done with local anaesthetic to the throat and to be honest I think the latter is preferable. Being partly sedated I tried to stop them and pull the tube out whereas there's more sense of control whilst you're completely awake.
It's a procedure that has come on dramatically over the years and my mother in law who is 86 had no bother with having the procedure recently.
The main advice is to relax and it's soon over with. Of course it could be the other end but unlikely if it's tummy trouble you're experiencing. Sometimes they do both (and I'll refrain from the gross joke that of course it's a different tube!)
Had one down the GI tract this year. I recon the banana flavoured stuff they had me drink to numb and relax the tract ahead of it was worse than the experience itself. a little uncomfortable as the tube was directed around corners but was soon over. I was sitting in the waiting room with a glass of water ten minutes after it began.
I agree with Newdawn relaxing is important, the surgeon tasked with navigating was very skilled and gained the information she required very quickly.
I certainly agree with you about the music and singing. I think some research has shown that singing is good for our health in many ways, and communal singing even more so.
And like you, I continually try to put my life in God's hands, again and again.
"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." (Matthew ch.6 v.34).
Paula
P.S. I'm not sure that the Bible verse I just quoted is the best for the CLL situation. I'd rather it said something a bit more positive about each day!!!
Hi Swiftbrook, I was so glad to hear they only found diverticulitis - which can be very troublesome, but at least it wasn't anything worse.
I am OK, thanks. My white blood cell count started rising much more rapidly this last year, so I've been told to expect treatment within the next year, but I'm trying to make the best of life before that happens. Maybe it never will...
We live in Sheffield. I'd mentioned that we go to North Wales quite a lot, and wondered if we might be there this autumn, but actually we probably won't, now. We're thinking of the Lake District instead, this time. Will let you know if we do come to North Wales.
By the way, I notice that you questioned AussieNeil and Cllcanada about their indepth knowledge of CLL etc. Well, they have done an amazing amount of research on the internet, as well as networking with other CLL patients and specialist CLL medical experts, over many years. So they really do know their stuff. Not that it's a bad thing to question though - no one gets everything right all the time.
I realise you said you're away in South Wales so not on line for a while, but I wanted to reply to you before I forget. Blessings on you, enjoy your time away,
I've been on W&W for five years. Most people ask how you are, and you reply "Fine" because you don't want to track through the list of symptoms. I have an arrangement with my circle of close friends where I reply with a number from 1-10. They know that 8 means you're having a very reasonable day despite the sweats, exhaustion and appearance of twenty small warts on the back of your left hand [why only on the left??] and that 2 means you feel pretty lousy, depressed and would welcome bright breezy conversation and a general boost. It works well.
There's no doubt it's tough emotionally living with W&W - particularly if you have a strong need to feel in control of your life. I wonder is it any easier for those with a more laid back, easy going disposition?
Educational information certainly helps me feel more in control of my health, though then there's the frustration of not being able to access the particulars on specific prognostic factors in Australia at least.
I can still loose myself in a good book and exercise definitely helps my mood. I often take something to read when I go for a walk and get double the benefit.
I really enjoy music and have had some great evenings just listening to and rediscovering old favourites on Youtube. While I've loaded up an MP3 player with my favourites, I rarely take the player with me on walks so that I can enjoy the natural sounds of the environment. While it might be tempting to listen to the player when I go cycling, I figure I need the additional warnings of approaching danger that a music player would mask.
Then there are sites like this where you can share what you are going through and know that you are not alone.
Nice one, walking is O.K. but I question the value of more taxing sports,to my mind if you are producing too many white cells each time your body produces blood are you not adding the No of them when you exert your self in exertion like running or cycling long distances?
We know that vigorous exercise boosts the number of neutrophils (the most common white blood cells if you don't have leukaemia), but they are released from the spleen, where they've been sequestered for quick release when required.
Some of the benefits from exercise come from the work-out it gives to your cardiovascular system; your body is dynamic and responds to challenges by strengthening areas that are stressed (in a good sense). While we can most dramatically see the impact lack of exercise has on astronauts, who don't have to constantly work against gravity, we can also see the effects on ourselves if we are immobile for a long period, i.e. by being bed ridden, or when we have a broken limb immobilised.
Our bodies obviously have a self regulatory processes that drives the replenishment of the different blood components. With CLL, that doesn't work as well because our B-Lymphocyte clones (that proliferate in our nodes, spleen and marrow) die much more slowly than normal, so get out of balance and also in later stages crowd the marrow. These clones are also more fragile than normal B-Lymphocytes, which is why you'll often see the comment on your blood test "smudge cells present".
There have been a few studies recently that specifically looked at the value of exercise for leukaemia patients and definitely showed improvements in fatigue levels and mood.
I don't know if any studies have specifically investigated if increased exercise reduces our lymphocyte burden, but we know that clonal lymphocytes are more vulnerable in the peripheral blood, so you would expect that any activity that can force them out of their protective micro environments (nodes, etc), where they are proliferating, would be beneficial.
what a week you've had. Glad its turned out ok, though we'd all wish we were better than we are. I read Cllcanada's link, you can do this by clicking on the blue text. It is not easy to exercise when you are feeling breathless and tired, but it helps you stay strong and gets you as fit as you can be, but only if there are no other health problems preventing more exercise.
I'm sure you know, but always check with your GP if you are thinking of undertaking new more strenuous exercise.
Slow and steady wins the race - particularly when it comes to CLL and exercise. I've found out from painful personal experience that you make the most progress by very gradually increasing your exercise levels.
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