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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
I explored stress and CLL life a year or so ago and was able
then to conclude that managing stress was going to be an important part of my journey
with CLL. How do I remove what may not benefit my general health over time?
Does the stress induced by life with CLL have an effect on the CLL?
There seems to be plenty written that is not CLL specific
suggesting it may have an impact on life with the disease by further affecting our
general health, immunity, disease progression and response to treatment? Enough
for me to realise that stress management must play a significant role in our
quality of life. There are so many ways we can improve this and so many different
approaches to this. I’d be interested to hear how others combat it to enable
them to get on with things.
I noticed that NHS Direct Wales provide their own CLL overview (it
is worth a read) and interestingly does acknowledge some of the possible psychological
effects of living with the disease and recommendations to help with this. This
may be useful when seeking support.
Receiving a diagnosis
of chronic leukaemia can be very distressing, particularly if it is unlikely
that your condition can be cured. At first, the news may be difficult to take
The situation can be
made worse if you are confronted with the knowledge that even though your
leukaemia may not currently be causing any symptoms, it could be a serious
problem in later life. Having to wait many years to see how the leukaemia
develops can be immensely stressful and can trigger feelings of anxiety and
If you have been
diagnosed with leukaemia, talking to a counsellor or psychiatrist (a doctor who
specialises in treating mental health conditions) may help you to combat feelings
of depression and anxiety. Antidepressants or medicines that help to reduce
feelings of anxiety may also help you cope better with the condition.
You may find it useful
to talk to other people who are living with leukaemia. Your GP or care team may
be able to provide you with details of local support groups.
resource is Macmillan
Cancer Support. Their helpline number is 0808 808 00 00 and is open Monday
to Friday, 9am to 8pm.
I know some of you
have heart worries and other issues. Sometimes these may have hidden benefits and
not just exclude us from treatments adding to stress. Good luck Jue and Sparkler
with your monitoring I hope they get to the bottom of things for you.
As a CLL nerd, I was helped to overcome the psychological
effects of a recent intervention and diagnosis of heart disease. When I realised
that the medications that it left me on may actually be helping my CLL.
According to the findings of an animal study published last year by the Neuroimmunology
Research Unit, Department of Psychology, Tel Aviv University Israel discussing
a link between leukaemia progression and Psychological stress? It suggested a
need for long term study of beta blockade( : I am a lot calmer these days LOL. The paper is a bit scientific but it did show me a link.
Do Stress Responses
Promote Leukemia Progression?
Enter your message...
Hi there, I found this really helpful. He mentions stress about 5 minutes in to the video clip. You may have seen it already.
It's been interesting and helpful reading the posts over the weekend around feelings of shame.
H i Sparkler
You are right, it is often another issue that identifies it for us. It is also harder when the needs of the community may not be widespreadly recognised and not readily provided for also making it even harder to be able to act if your wish too. I find the link between the psychological and the physiological intriguing. The effect of stress on our immune system in particular, if we have a cancer of the immune system then this is directly affected in some way or other?
I am interested in peoples coping strategies.
Yes a chill pill could be one (prescribed LOL) I hope you can get your antibiotics too. it's good to hear you out and about a bit
Dabbling with a bit of "mindfulness" training at the moment - sort of living in the moment meditation and gentle stretching routines. I do this in addition to walking loads, and more strenuous cardio-vascular exercise such as rowing and swimming. I honestly find that the buzz I get from exercising is the best antidote to stress. It also makes me feel as if I have at least some control over my body...
check out the mindfulness master Jon Kabat-Zin in this little taster session http://www.youtube.com/watch?v=D5Fa50oj45s
and then work your way gradually through the four guided sessions (about 45 mins each) on this tape http://www.youtube.com/watch?v=8aoOlUWO_ak
I love it - it makes me realise how much extra "stuff" is going on in my head all the time and getting in the way of just being grounded in the world. It's hard to slow down at first though - see what you think...
It's being used quite successfully for depression and pain relief at the moment.
Be interested in hearing what people think, or whether folks are already using this technique...
Thanks for the links Adam and Julia I will have a read and get back. Sparkler, laughter has to be high on my list I made a few notes last year that I can add to yours.and revisit.Here's a thought, laughter may improve our faulty immune system but:.
Is there another side to CLL too; there is always the question if we should stimulate our immune system, could this stimulate the disease?
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, B cells, Natural Killer cells (which seek out and
destroy normal cancer cells that they can recognise) and Cytokine Gamma
Interferon (which inhibits tumour growth). Humour boosts the whole immune
we know our tumour cells being part of the same system (B cells) cannot be recognised so I can justify why I don't laugh as much any more.
So I don;t feel to bad when i'm being a grumpy not so happy CLL patient some of the time.
Boosting the immune system is a popular theme in fighting cancer and laughter underpins this. But its OK for us not to smile it may be good for us too. LOL???
Stress and the Cortisol connection
Hi Gang, I had a crap night as I misunderstood how to re
register and hated being locked out. A clear head and it was straight forward.
Anyone else having difficulty should read community
news item for clear instructions that take you through re registration and link you back
Hi Adam, I enjoyed Dr Tam’s You tube talk form the Aukland
CLL support group. An interesting set of four podcasts, I see he is a
consultant haematologist with a special interest in CLL. It was interesting to hear a southern
hemisphere presentation during a support group meeting. I can see how it was helpful it was a very
straight forward talk . I found his
comments about stress and the immune system very helpful and his pointing out
that the immune system may be picking off the odd tumour cell helping to keep
the disease under control. I had never heard this described like this. It
clearly indentifies the benefit of not stressing the system ( I take back some
of what I said in jest earlier)Thank you for the link
Hi Julia great to hear that exercise is doing it for you, I
have been a little lazy for a while now that winter is nearly here I do find it
harder to get myself out there. I must try for that new puppy again ( I should
have used my birthday). Thanks for the Mindfulness links I have had a go and
will dabble a bit too it was quite hard for me.
Hi Mike thanks for the link, I’m not sure about some of this,
I was concerned about the recommendation the writer offers for regulating
this?? “Simple solutions are to regulate
stress by relaxing more, eating better, avoiding stressful situations and
staying off Big Pharma drugs”. As in Dr
Tam’s talk avoiding stress and a balanced diet are recommendations. coping
strategies that others have found helpful
would be interesting to hear?? What did
alarm me was advice in the article you posted suggesting we stay off “Big
Pharma drugs”? These are the only things
that keep me alive daily and CLL treatments are manufactured by “Pharma”. This was dangerous talk in my humble opinion
and is suggesting actions that could cause harm?
This Wiki article helps explain the role of cortisol and
From Macmillan: How
complementary therapies can help “There are many different types of
complementary therapy. You might find it helpful to see our information
about choosing a complementary therapy.
They may also be used alongside conventional therapies. “
Yes, the article wasn't aimed at CLL patients, just a general audience.
I assume enough intelligence to take from it what is relevant and leave the rest, I think everyone here can do that.
Hi Grumpy Sparky,
Sorry you are feeling so bad. I thought you might appreciate
a few Latin rhythms to get your lymph moving.
So these are for you
(Speak low, Gato Barbieri)
(Latin Lady, Gato Barbieri and Carlos
(Europa, Gato Barbieri, written by Santana)
If I remember correctly, you know Gato Barbieri?
I'm fine Sparky, nothing to complain about.
It's a nice sunny day here on the south coast so will probably take my sciatic leg for a bike ride along the seafront.
I just love Gato Barbieri's music, listening to it now :) The Meercats like it too:-
Grumpy's right!! You have a sound heart!!
For stress and anxiety, a 'hands on' therapy has been proven to help, maybe the hospital does massages, reiki, Indian head massage or any other complementary therapies.
I am lucky in that our local row of shops has a hairdresser who has a small room for beauty, including massages.....as a carer, I need to buy it myself, but it really has done wonders when I was stressed out.
Hope something in the hospital can be found to help.....
I’ve had a little too much dessert today. LOL Cheers Adam, great news about your ticker Jue!!
Just back from a monitoring visit. All good. Didn’t see my
consultant his day off, so no info! Frustrating GRRRR but that’s CLL life,
these visits do unsettle us even if they don’t alarm us. LOL I am now seriously
considering looking at therapies that will help dissipate or prevent some of
This link to an article written for the CLL support
association may be of interest, it was written a while ago so the link to Macmillan
complementary therapies can help information is headed Cancerbackup :
The role of
complementary therapies within orthodox medicine.
The massage debate is one that has come round a before in
the group. From what I have read it can depend to the individuals disease type,
stage and circumstance the opinion of your consultant is important. I know
someone expressed in an earlier group thread concern of spreading SLL through
the lymph, SLL is the solid form of CLL/SLL confined to the nodes? (don’t know
what the facts are) CLL is everywhere any way so I don’t worry about spread
myself but I do bruise, not because of
the disease but heart medications. But a hands on therapy does feel so good!!! I guess you know if you have too few or
faulty platelets, check with your consultant first.
If you are a cancer patient your therapist does need
experience in massage of cancer patients. My nodal and tissue involvement is
low so a therapist does not have to negotiate bulky nodes spleen or liver, I am
very interested in looking at these therapies even though I bruise. I was given a talk by an experienced therapist
who is also an experienced NHS oncology nurse and the thing that stuck in my head the
most as she demonstrated on my friend was the benefit of the touch element of
the therapy. The effect of skin to skin contact. An experienced therapist
should vary your therapy to suit your needs? Penny Brohn Bristol are a good
source of information: http://www.pennybrohncancercare.org
I am not sure how you
gain access to a NHS facility if you are not a resident patient? Most often we are outpatients . I remember there is a warning about essential oils that may be
contraindicated if you’re undergoing treatments. Anyone got info on how we can gain
access to alternative therapies through the NHS if we are not in treatment or
Hi all,I love the poster re: Stess is Deserrts spelt backwards! My 'stress' today was a big heap of profiteroles - Two of my friends took me out to lunch for my birthday, it was scrummy! Thank you all very much for your happy birthday greetings - much appreciated. Whilst I don't want to grow old (71 now) at least I am still here eh?Love to all, Lizzy xxx
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