How to Fight CLL

[Davdow]

A recent message from an oncology nurse was so brilliant, I decided to build upon her theme. Please see the post (Sorry I cannot find link, but title was"To Every Cancer Patient I Ever Took Care Of: I’m Sorry. I Didn’t Get It.", and you can see my original reply below)

It got me thinking about how we fight something when we do not have any treatment, and it is all about the power of the brain. It is about emotions, about attitudes, yet there are no easy solutions as everyone is different. Some will be scared, some will be scared some of the time, some will be positive, some will worry all the time, some will worry part of the time, some will not worry at all.

But whoever you are, you need find your own route.

You need to find what works for you. And you need to try discuss with someone what works with you- I agree with another post that we do not address emotional and mental needs sufficiently. We have wonderful and professional people in health care in the UK, but when you see your specialists they are not equipped to deal with the psychological issues. As explained in my post below, which was a response to the oncology nurse post, I fight back by running (which sometimes I even enjoy!) and I am convinced it made me so much healthier and equips me better to deal with any future obstacles than when I first needed treatment. But I have lapses, I am so lazy naturally and if I did not have the motivation of raising money for charity I definitely would just sit at home and watch TV and possibly even sit there any worry, though I am only an 'occasional worrier' . I need to feel inspired. I need to have my music when I run and to keep thinking that I am helping people who have not been as lucky as me. I do not feel at all special, especially when I see all the brilliant and courageous people who dedicate themselves to raising money. but I do get a wonderful lift and feeling of achievement when I complete a long run. (I haven't surpassed the yearly Great North Run Half Marathon in Newcastle, but one of these days I will take on an even greater challenge!)

So my answer to the question 'how to fight CLL' is to find your inspiration, from wherever you need it, find what works for you. And if you haven't found it, then keep looking, never give up and try to enjoy your life and when you cannot try to find a way if you can; I am sorry if it that sounds corny, or is a disappointment, as nobody said it was easy. But it will surely help if you adopt this way of thinking. Be inspired!

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Original Post: (Reply to quoted article above):

This indeed really sums up the whole dilemma of 'watch and wait' which so many CLL people have to endure. It really is a mental torture. And then there is the guilt of thinking that perhaps we are worrying too much compared with someone who has a more aggressive cancer, or who is suffering more. But with CLL we never know when or if it is going to become aggressive. It goes against all the stereotypes such as diagnosis, treatment with cure or treatment with no cure. It is the worst and the best cancer to have. It is mainly in older patients which makes it worse if you are diagnosed early which in most cancers is a positive thing.

In my case I was glad I was diagnosed early (at 39) but there are times when I wish I had only found out when I needed treatment 5 years later. Now 59, no longer in remission, I wonder what the next chapter holds. Most of the time I have been very lucky, enjoying a long remission and good health, but now out of remission I wonder if I can do anything to fight back.

In this case it is best to follow what works best for you; some 'fight back' by changing their diet, but I decided against that as sticking to a strict regime would have depressed me so much I probably would have jumped under the nearest moving train (OK maybe not one that would have killed me as I am too much of a coward to do that!)

For me, I try to be sensible, I never smoked before and never drank much, but I drink even less, and try not to eat unhealthy foods too often, but I still enjoy the occasional curry and / or fish and chips

No, for me, my fight back, and I am really proud of this, was to start running and to raise money of blood cancer charities. I pledged to do this when I was at my sickest. 'if' I survived a serious infection due to the heavy chemo.

Now I am beginning to struggle a little, I get home and cannot be bothered to train sometimes - I target one Half Marathon a year. So I need a little support, from this list, from you good people, to get out there and train again.

I worry if a heavy cold and cough that I have not shaken off for 6 months means progression of the CLL, but my counts remained stable albeit a high WBC and slightly low RBC. All the doctors I have consulted give me different reasons - My immune system fighting off something; Asthma, Runner's asthma; an allergy. So since they cannot figure it I just decided to not worry about it, and go ahead and train

Well that is about it, the excellent post from the oncology nurse really got me thinking, and thanks a lot for this.

We must keep fighting back anyway we can. I am going to run like crazy tonight and I think you will support me. I can feel it through the magic of 'tinternet' (Yorkshire expression for Internet, in Scotland we have others!)

Thanks, be inspired, fight, win, beat the CLL!!!!!

[Myrddin]

This looks like the reference you mentioned

huffingtonpost.com/entry/de...

[Kwenda]

Sorry but must it be always a ' FIGHT '..?

I remain uncomfortable with the constant references to 'fighting cancer'.

The war anology is not always good.

[Davdow in reply to Kwenda]

I think if you do not regard it as a fight that is also fine Kwenda. I personally find it helpful as if I did not 'fight' it would be, for me at least, like just doing nothing and that would be slippery slope. But if you find it better not to use the term, which i agree is probably over used (But what else would you substitute?), then this is an example of finding your own way.

'Fight' is a catch all for not letting the cancer win. You can see it everywhere, and it definitely does not suggest anything violent!

For example, there is a Channel 4 campaign "Stand Up to Cancer" and another recent programme when people talked in fighting terms. This is all very positive stuff in my view, and this spirit comes from many people who are in the 'same boat' of having different types of cancers.

Sorry if you do not like the word though, I respect your opinion even if I disagree

[serendipity1]

Hi Davdow

I read that and it did uplift me (I am a carer though, so my impact within may be different to others) this is where I am guiding my partner to be like, just how you are, if that makes sense lol.

We have started off writing a list of all we are thankful for, all that we have, what we have seen, done, etc and he's realised his life hasn't been so bad and it can continue to be good, just a little tweaking here, there etc. When diagnosed he thought his life was over, however, we have been to wales for a long weekend, blackpool, spa weekend, yes we adapted lots and worked around how he was, however, he has learnt it doesn't mean life stops or has to be put on hold. Our list of affirmations is being ticked off, from simple things like a walk with beautiful views, appreciating what is in front of us, cuddles and movie night, spa day etc

I think any news anyone gets, ( C word, lose their job, etc) the impact and how they absorb it does and will have an effect on their emotional and mental well being. Everyone has their own journey, own emotions etc and must ride out their journey which they deem fit for themselves etc.

I have seen people be diagnosed and be knocked off their feet, never get up, never take a shot and just accept, but I have also seen people be knocked off their feet, then get up and fight, either with treatment, healthy lifestyle, running, tracking etc

I really do love this board, we read what people think, feel, have experience in, knowledge, guidance, informative, uplifting, supportive etc and from each thread I always take a piece from something someone has said and that helps with our own journey

[Davdow]

Hi serendipity1

Thanks also for your really nice post, and pleased that you found mine uplifiting. Absolutely right. We all try to take what we can and give what we can to this list. I haven't really posted all until today, but it is also really cathartic.

Having said, that I better get back to work or I might end up with having other issues related to not working

Take care Davdow

[New-Attitude]

That is definitely worth the read.

[Peggy4]

I think it's lovely that we can all share our thoughts and feelings even though they're not always compatible with each other. I try to take the good bits from everyone as all are valid opinions and well meant.I sometimes need a gentle reminder how lucky I am to be 'in with a chance' After reading some people's stories I will. be grateful if I 'only' have CLL which is something I never thought I'd hear myself say.

Thanks all

Peggy

[kathyg]

I was dx 2007 and what has keep me on the w&w journey is my faith in Jesus. To keep me from worrying and being fearful I have been drawn closer to Him by reading the Bible , praying and serving others. Some days are hard but I work through them. This journey even though I would have picked something different is to make me better, more like Him. This is how I fight CLL.

[CLLCalifornia-USA in reply to kathyg]

Amen. Without my strong beliefs I would be lost. It keeps me going in a positive direction and spending less time worrying about me. Thanks, Kathyg

[Saska-Jul31 in reply to kathyg]

Bless you for your great " witness ". He is our refuge and our strength" 🙏🏼

[CLLCalifornia-USA]

Thanks, Davdow. You inspire me! You also face your reality with good humor. Kindest regards, Sally

[Davdow in reply to CLLCalifornia-USA]

Thanks so much CLLCalifornia - oh, California, another fantastic place which I was so lucky to visit a few years go. Maybe one day I will go out again - ah the coastal drive from SF to LA, the Big Sur, etc, bliss, what lovely memories!

[neurodervish]

Hi Davidow, Here's that earlier thread healthunlocked.com/cllsuppo....

[Davdow in reply to neurodervish]

Thanks Neurodervish and to all the other nice replies. Keep the inspiration going!