Anxiety

[nanaseventimes]

Happy New Year . So far I am still in remission from cll but have been feeling anxious a lot lately. The least little thing sets me off. When I do feel good it is great then the funk hits and I experience anxiety that is hard to shake. I feel better when I visit my daughter and grandchildren but they work and go to school and I do not want to pester them all of the time. My mother is 92 and is experiencing some health issues and I am helping her. She does not know I have cll as I do not think she would do well with the knowledge. Just needed to bend some ears and try to feel better. You all are so helpful and always willing to listen. THANK YOU!!!

[AdrianUK]

It must be something in the water. Maybe the new year or something. But you are the second person to ask about anxiety on a forum I’m on today. You are NOT alone. I think we all get anxious. Here’s what I said to the other enquirer on a different forum. I hope it helps.

I think anxiety is a very natural reaction.

It is also an adaptive one.

We get anxious to force us to examine a scary problem and resolve it.

If we simply try to ignore our anxiety and surpress it then it will get worse and worse.

If we focus too much on our anxiety and dwell on it all the time it will get worse and worse.

What to do then?

Find ways to deliberately and specifically acknowledge your anxiety and explore it. This can include talking to a family or friend (be careful tho as not all of them will be able to cope with your raw emotions), a minister of religion if that’s your thing, a telephone Helpline (both leukaemia card and Bloodwise have great helplines and I don’t mind admitting I’ve called them both at times!), your medical team, and if you can get it professional counsellors.

Most people find that some knowledge helps to alleviate their anxiety in the long run tho it can make it worse in the short run!

You can also sit down with a pen and paper or electronic notebook and write what it is you are anxious about and how you will manage it. And of course come into the forum and ask questions as you so wisely have already!

Then, once you have sat down and written your list thinking about what you can and can’t do to manage the risks you are facing, then take the relevant actions and try to shelve the anxiety for a while till the next “anxiety appointment” you make! Sounds odd. But putting the worries in a box and on a shelf and then trying to distract yourself is fine provided you have those outlets I spoke about.

So some silly Netflix program. I watched Jane the Virgin of all things when I was at one of my lowest points. It made me laugh. And when I was watching it I was not thinking about cancer at all...until several seasons in one of the characters gets cancer! But oddly I found that quite cathartic tho I was annoyed at my secret refuge being invaded like that.

Also meditation and especially mindfulness can really help. As can healthy eating and managing your relationships and work/life balance. It’s somtimes like a tsunami has come into your world. You may we’ll find attending a face to face support group to meet others with similar experiences helps a lot as does attending courses set up by Charities such as Leukaemia care. One that looks very good and which I intend to go on myself sometime this year is Penny Brohen. They run a free residential course which looks pretty good and has good reviews. (It’s even run in some NHS settings but the idea of residential appeals to me!). pennybrohn.org.uk/find-help...

[nanaseventimes in reply to AdrianUK]

Thank you for your advice and I will look into your suggestions. Just voicing my concerns today made me feel better. Guess I need to stop drinking the water. LOL Need to get up and get moving.

[AdrianUK in reply to nanaseventimes]

Sit and write that list of what you are worried about and what you can do if anything to understand the risk or reduce it. And then take a walk in the forest or something else to distract you! That would be my top recommendation of all of them.

[nanaseventimes in reply to AdrianUK]

Thank you for responding. A distraction sounds like a good idea.

[Ernest2]

Dear Nana,

You have a great reply from Adrian I think.

Also try the following if it helps:

healthunlocked.com/cllsuppo...

I told my mother just before treatment as I thought I couldn't fib any more, and lost her to a stroke during my chemo treatment. Treatments have moved on a long way since then so I'd really keep stum (quiet) for as long as you can.

Funny I will never forget sitting in an Anna Schuh presentation. She explained that about 30% of CLL patients suffer from anxiety. I went away and realised I was one of them.

Sometimes anxiety can work for you in your favour, but in others being able to control, tame, and direct it would be helpful.

Hope Adrian and Kevins thoughts might help.

Wishing you well,

Ernest

[Hidden]

Hi Nana, living with cancer is tough...and anxiety affects us all at different levels. Some good people have already offered some solid advice replying to your post.

I have been living with cancer for 19 years...crazier still, during those 19 years, I have been diagnosed with five different cancers; I was diagnosed with CLL just two months ago and I start 6 rounds of Taxotere for prostate cancer next Thursday.

I can tell you that I occasionally experience some anxiety. My remedies are as follows:

1. Listen to music

2. Go to a movie (this helps a lot if I have the time)...most of the time I go alone.

3. Walk for an hour and listen to a book on Audible.

4. Go to church as much as possible. (I am a true believer in the power of prayer)

5. If all else fails I take anxiety meds...but that's rare.

But most of the time, people on health unlocked help because we're all in the same boat. Different problems, ages, cancers...but we all have a lot in common. Anxiety is just one of those things we live with...it's unfortunate, but I'd rather be living with cancer and anxiety than the alternative...there's still a lot of life for me to experience...a lot to live for...that keeps me motivated.

Be well

[Sushibruno in reply to Hidden]

I admire you very much CRK2.

[Hidden in reply to Sushibruno]

Thank you Sushibruno...you just made my day

Be well...

[Sushibruno in reply to Hidden]

🤗😊👍

[Newdawn Administrator]

Hi nana,

I suspect from reading your previous replies that you’re from the US and actually a pretty capable person who is more used to giving than receiving. People in that situation tend to try and absorb their own worries more but there comes a time when the anxieties hit and we all realise we need to off-load somewhere. Like you I didn’t tell my late mum and don’t regret it at all because I didn’t want her to end her days with that angst even if she’d been able to understand fully with her poor memory.

Having a mother of such an advanced age is an additional responsibility for you and it seems you’re keen to spare those around you. I get that totally because I spent nearly 7 yrs keeping my diagnosis from those around me with the exception of a few close family and friends.

Being in remission brings its own emotional pressures that I can share as my treatment continues and I’m making good progress. Watch & Wait the sequel is way scarier than the original! We feel we have more to lose and a bigger battle to undertake. It’s such a natural emotion recognised in all cancers so take heart that your feelings are very normal.

You’ve had good advice for diversionary and supportive sources but obviously some of the U.K. based ones won’t be accessible. I think the important thing is being able to acknowledge the right to your feelings and knowing they are shared by so many of us. I readily admit to them and sometimes they shake me to the core. But like with you, they pass. The only time to be really concerned is if they take root and become debilitating. However, something tells me nanaseventimes has too much to do and too many people to be there for to allow that to happen! 😉

Huge best wishes,

Newdawn

[nanaseventimes in reply to Newdawn]

You are so right. This was a recent development and took me by surprise as I have never felt this way before. I can't be down because I refuse to scare my family and bring them down with me. Only a few family and friends know about the cll so I do not want to cause them undo duress. Thank you for reaching out. It is greatly appreciated.

[Tommays56]

Hi Na

I have been in long term PTSD treatment and was doing well with medication and had developed and active lifestyle as a more positive way of dealing with it

With the CLL diagnosis in 2017 I slowly had to stop the healthy activity I had enjoyed As fatigue and inability to recover took over

in the end all I was able to due was go to work and sleep and the PTSD got worse after 25 years of good control

Personally I had to make a huge lifestyle change and was in a position to retire and focus on my health so I did

I continue to work with a counselor every two Weeks and work on a new medication that will help me make the best of things

[Stelladoro]

Hi from Canada!

Im 71 and fem.been diagnosed for 5 mo with SLL on w&w

I seem to have that anxious feeling a the time for nothing in particular .Dont seem to be able to make a simple decision!

Also dont seem to want to do smple things like go for a little walk with my

Pup . I just dont feel myself.Anyway i hope you xan feel some peace!

[ksteinberglewis]

Thank you for sharing. We all deal with anxiety at some point. I was on watch and wait for 8 years and pretty much had no symptoms . Then I got a side affect of CLL which was anemia. I was in treatment for almost a year and just kept putting the next foot forward because I was doing whatever I could to survive but I wasn’t anxious. It was only when they finished treatment and I was in remission that the anxiety set in. It hit me between the eyes because I didn’t expect it. I went to a therapist for several months and started to remember that I can only do what I can (eat healthy, exercise, stay positive) and what will be will be. The anxiety got easier. I also go to a great Leukaemia and lymphoma support group once a month and I am grateful for the health and family and friends I have. Practicing gratitude, mindfulness, meditation, yoga, etc all help us reduce the anxiety