UK CLL Forum, UKCLLFORUM

Stress

Topic Made On: Apr 17, 2009 05:10pm
GAGLA

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How does dealing with a stressful situation affect CLL?

I have been under the cosh at work for a while - been going on for about 2 years now - I have been through a partially resolved greivance procedure - but now I have had with 2 weeks notice, my work hours changed (they are within their rights to do this as it's part of the contract I signed) but I fear I will not be able to comply with these changes - it involves more late nights and weekend work.

I am now off with the stress this worry is causing and may not be able to differentiate between the stress sweat and poor sleep and CLL sweats and poor sleep.

Unfotunately, my work - I suspect due to my previous challenges - will not be sympathetic to my condition and this stress's me out more.

So does stress make CLL worse?




Replied On: Apr 18, 2009 09:17pm
jokeating

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Hi, It sounds like you are having quite a rough time. I don't know the details of what has been going on at your work but I hope they have got extremely solid grounds for their decision to give you two weeks notice as with your condition you could have a strong claim through the disability discrimination act. As your grievance is only partially resolved as you say then this struck an alarm bell with me for them to come to a conclusion at an unfinished stage and for them to change your shifts and make things more difficult for you when you have a medical condition does not seem right at all and very unreasonable. I always read the postings on this sight with interest. I am not a sufferer of CLL but it has affected my life as 8 months ago my dad was diagnosed with advanced CLL and died 6 days later when he burst a blood vessel in his brain. CLL came into my life that week with a bang and ever since I have tried to raise awareness and do a bit of fund raising and gain some knowledge of this horrible thing that has taken my dad away at his age of 58. I am not an employment expert but I am an HR Assistant and something does not feel right. I would suggest you get some professional legal advice (if you feel the energy to fight back) as your employer sounds very cruel. Also employers usually get a little frightened if they hear the words "Disability Discrimination" as the compensation awards are unlimited so there is no maximum limit payment which usually makes companys shake at the thought. I just want to wish you all the best with everything as it sounds like you could do with a break. If they are determined that you are going in 2 weeks and not compromising then get signed off and stuff them!!!!!



Replied On: Jan 03, 2010 07:48pm
patj

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ask for an Ocuapational Health referral if your compnay has a dept, and look up DDA,Disability discrimination Act



Replied On: Jun 22, 2011 10:22pm
Venceremos

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I was diagnosed with CLL last October [monitoring only]. Most of the time i'm totally philisophical about it (part of me still doesn't believe i've got it). But on the other hand - even regular stress can sometimes make me even quicker to anger than i used to be. After a recent blow-up i quit something that i thought i cared about. Personality clashes make me want to fight or quit with seemingly little in between.



Replied On: Jun 23, 2011 08:45am
Nick

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I can relate, although a recent stroke and the discovery of hypertension, forced me to address a rather quick temper, I still find I can overeact or go the other way and appear disinterested or just say my perseptions just a little too bluntly. Maybe a CLL diagnosis and the consequence of living this way now contributes?

During my recent forrays into how state of mind can improve your immune system and assist a disfunctional system caused by CLL for example, I was surprised as to how there may be physiological as well as the obvious mental benefits. So I have borrowed some of this thinking that is helping me and can see how much of this can help us during the turmoil we face.

Make up a good supply of jokes, books, funny DVDs, etc helps keep you laughing.

Humour gives us heart. Humour gives us hope. Humour is a lamp that dispels the shadows cast by illness – Robert Holden.

Anything is possible. If one person can get over an awful prognosis, others can too. But in that situation, you can’t allow yourself too many negative thoughts. You need to be around people who keep you positive, who love you and care about you. Keep up your sense of humour, it will help to get you through anything that comes along.

In all the research on humour over the last few years, the studies have shown that humour and the positive emotions – love, faith, purpose, determination, the will-to-live, and hope- are a powerful biochemical prescription for dispelling foreboding and despair, and the deep feelings of apprehension and panic that accompany serious illness. Humour radically stimulates the whole immune system, significantly increasing immunoglobulins and T cells, Natural Killer cells (which seek out and destroy cancer cells) and Cytokine Gamma Interferon (which inhibit tumour growth). Humour boosts the whole immune system.

The art of medicine consists of keeping the patient amused while nature heals the disease –Voltaire.

Negative emotions – fear, misery, panic, anger, depression and anxiety- make people feel helpless and hopeless and dampen down the immune system.

Positive emotions, humour and optimism also release endorphins and enkephalins, which are the body’s natural painkillers and regulate the immune system and tumour growth.

Studies also show that cancer patients with humour and a fighting spirit are most likely to be long-term survivors and have longer remissions. So, see, you’re there already!LOL

I remember as a kid, not understanding or wanting to deal with the news or the opinions of news papers, I always turned to the funnies first, Somthing I have started doing again. Seems to help me. I am thinking of starting a CLL cartoon strip, I think we can all laugh at the absurdity of it all at times. Any one got any ideas for characters?



Nick and a few others







Replied On: Jun 23, 2011 10:07am
Nick

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Briefly as CLL seems to throw up so much dichotomy in thought.It occured to me that if humour can stimulate the immune system and for example the CLEAR trial is to investigate the effect of infection in driving CLL,which is also stimulating the immune system. Then perhaps it may be best for us to live a long and grumpy life?

:(



Replied On: Jul 07, 2011 09:10am
sassy1261

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Hi All, I have had CLL for at least 8 years now, although only diagnosed 4 years ago. During that time I have had a huge amount of stress dealing with sick daughter and looking after my grandaughter. I was extremely ill with a bug last year which took me months to recover from and then my daughter died in February. I consider myself very lucky because my white blood cell count has remained remarkable stable. However, I am feeling more and more tired and sometimes would like to stay in bed all day, although I don't have the chance. I only have couple of raised glands that are feelable, but I know there are a lot internally that could be raised, I don't know. I was wondering if I should ask for a scan, just to check that I don't have any internal swollen glands. Probably worrying for nothing and probably the stress, but I just feel awful. I only have telephone appointments with the hospital to check on my bloods when I have had the blood tests, is this normal? I have a 13q deletion, which as you know is one of the better ones of a 'better' cancer, so why am I worrying!



Replied On: Jul 08, 2011 06:40pm
Venceremos

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NEVER be afraid to ask for help: your life is at stake. Our 'better' cancer is perplexing: on the one hand we have to get on with and enjoy our lives as normally as possible; on the other hand - when i was diagnosed last October [Monitoring Only] i felt like i'd been given a death sentence with no execution date.
I'd add that you should be discussing blood test results with your GP face-to-face, and possibly having your blood tests done at their practice. Always be direct with medical professionals.



Replied On: Jul 08, 2011 11:15pm
Nick

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I don't think you are worrying for nothing, there can be exceptions for every rule, CLL is not exempt. We always feel like there is a hammer over our head. However your stable count and small palpable nodes in the neck, possibly suggest the disease is still stable. Stress can have a negative effect on us mentally and physically that can exacerbate the symptoms and side effects involved in living with the disease, perhaps laying you more open to opportune infection. Even at the early stages of CLL we have an already compromised immunity, stress can only add to this. Although I don't think it cause for worry that it may have caused your disease to progress.

However we have a serious illness and there can be no substitute for a hands on by a CLL consultant or at the very least a haematologist if you feel you are experiencing new problems. As Vinceremos suggests have your blood tests reviewed face to face with your GP, they are trained to assess the whole of you, without the benefit of sight and touch they cannot properly observe you, sometimes this is necessary for them to really hear you! Without they cannot suggest if you have something else going on too, or if they need to make a referral.

hardly surprising you are under the weather at the moment. If you are in front of them they have to address your issues. Have you considered joining a cancer support site, with an on line chat group, where staff and members are both experienced in bereavement and living with cancer and will understand what you are going through. friends made there can be very supportive.

Best wishes Nick



Replied On: Jul 09, 2011 10:26pm
sassy1261

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Thanks for the replies all. I would also add that the bug I got last year was in my throat, never got completely better and last week and the week before I had like a boil on the root of my tongue in the back of my mouth which eventually burst. Sorry to be so graphic. Because of things to be done, did not have time to go to the doc, just had to put up with it and it has now settled down. The haematologist at the hospital I go to is useless and not a CLL specialist. I even had to ask her to have the FISH test done, she thought she had asked for it but hadn't, then told me I was 'anxious' for asking for it! The nearest CLL specialist to me is in Cambridge and I live in Colchester. I think I am going to make the time to talk to my doc, who when I actually get to him is very good and discuss changing my spec.



Replied On: Jul 18, 2011 02:51pm
Baabee

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[color=blue]Hi folks, I was coming to terms nicely after the initial shock ----
Diagnosed Aug 2010 with a count of 12 !
It had, my GP told me elevated suddenly, after a very slow climb for several years,
That was when they let me know of it,s presence and sent me to hospital for diagnosis!
How well you described that hammer Nick, I used the same description !
I have been reading and trying to understand all info that is around -----
While getting on with living!
Apart from the stress of coming to terms with this and finding support
and comfort that we are not alone. This year has been rather packed with
STRESS on many fronts ...........
Your discussion on links to stress and CLL drew my attention as
My WBC has been increasing since
Aug 2010 from 12
Nov 2010 to 17
March 2011 to 24
June 2011 to 41
My oncologist is reassuring but slightly concerned
that it has more than doubled it's count in less than 12 months!
Sweats are often but minor to what I have been told to consider a factor!
We are still watching and waiting and blood tests 3monthly ....
I could,t help but feel less positive than I have been so far.
All your inputs do help as we are all in this boat together .
Keep up the good work of staying ontop of this hiccup we are facing.
Hugs Baabee




Replied On: Jul 19, 2011 12:07pm
sassy1261

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Babee, is your oncologist a CLL Specialist? CLLsupport.org.uk has a list of all the CLL specialists in Britain and you are entitled to see one if you ask. I certainly don't wish to worry you, but if it was me and my count had doubled from Aug 2010 to March 2011 I would be demanding to see one, if only to put my mind at rest. Have you had a FISH test, which should have been done, to show what deletion you are, because that makes a difference to how quickly they treat you as well. If it has not been done, demand one. Do you have any raised glands etc? Good luck with everything. For information I would also recommend clltopics.org, an american site written by a scientist who lost her husband to CLL and it covers just about everything and is very informativive, she actually now lectures to american specialists and spoke at a large meeting they had last year, so well worth reading..



Replied On: Jul 19, 2011 03:29pm
Nick

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Hi Babee, I agree with Sassy's comments,following diagnosis at the hospitol I assume you are now at least under a haematology consultant? A consultant with a special interest in CLL, will be closer to the face and more current. CLL medicine is fast moving, a CLL consultant's day is spent treating CLL patients, not just a few amongst many other haematological diseases.

On a practical note ask your haematologist to write a referal letter to your most local CLL consultant. If you are still only under your GP then insist that you recieve a referal.

Prognostic testing is often unavailable pre treatment time, however you have sufficiant grounds to insist on further investigation. Your CLL type and mutational status added to your clinical features and symptoms will give you and your consultant a bigger picture. Do not be alarmed, counts can be affected by different labs and lab days, and infection for example. CLL patients can carry on and function well with quite high WBC levels. But it is a good Idea to find out what is going on, by having a CLL consultant giving you a thorough assessment.

I understand how extreme your stress levels must be at, so here's a little light hearted stress relief. Good luck and keep us posted.

Nick

Somthing we all have far too much of and spend so much time getting through or learning to manage or avoid.



A young lady confidently walked around the room while leading and explaining stress management to an audience; with a raised glass of water, and everyone knew she was going to ask the ultimate question, 'half empty or half full?'..... she fooled them all... "How heavy is this glass of water?", she inquired with a smile.
Answers called out ranged from 8 oz. to 20 oz.
She replied, "The absolute weight doesn't matter. It depends on how long I hold it. If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm. If I hold it for a day, you'll have to call an ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."
" As with the glass of water, you have to put it down and rest for a while.. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced. So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... pick them up tomorrow.
Whatever burdens you're carrying now, let them down for a moment. Relax, pick them up later after you've rested. Life is short. Enjoy it and the now 'supposed' stress that you've conquered!"



1 * Accept the fact that some days you're the pigeon, and some days you're the statue!
2 * Always keep your words soft and sweet, just in case you have to eat them.
3 * Always read stuff that will make you look good if you die in the middle of it.
4 * Drive carefully... It's not only cars that can be recalled by their Maker.
5 * If you can't be kind, at least have the decency to be vague.
6 * If you lend someone £20 and never see that person again, it was probably worth it.
7 * It may be that your sole purpose in life is simply to serve as a warning to others.
8 * Never buy a car you can't push.
9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.
10 * Nobody cares if you can't dance well. Just get up and dance.
11 * Since it's the early worm that gets eaten by the bird, sleep late.
12 * The second mouse gets the cheese.
13 * When everything's coming your way, you're in the wrong lane.
14 * Birthdays are good for you. The more you have, the longer you live.
15 * You may be only one person in the world, but you may also be the world to one person.
16 * Some mistakes are too much fun to make only once.
17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box.
18 * A truly happy person is one who can enjoy the scenery on a detour.
19 * Have an awesome day and know that someone has thought about you today.
20 * It was I, your friend!
*Save the earth..... It's the only planet with chocolate!



Replied On: Jul 21, 2011 03:54pm


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Wow!
Thank you Sassy and Nick --
I have taken all you have both said onboard and also had a smile Nick--your 1-20 etc re stress is something I try very hard to do,
..I was 73 last week but feel I have only just started to live for ME instead of living for my families needs--
so I am determined to listen and read what I can ---and master this latest blip in life.
Well if I sound positive perhaps that will work too.
Sassy thank you for the CLLSA link lots to work on from that site .
So from you helpful people and what I read I hope to come out fighting!

No! I am not under a Consultant after checking the list you linked to --but my oncologist seems very good for me! Christies would be my nearest
I shall ask for all the things you mention, once I understand what it is I am asking for.
Your help and this site is a great reassurance and help to those who have just been diagnosed as well as the long term survivors of the 'good cancer'






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