I’m writing to apologise for not appearing much on the CLL Support HU for that past 6 months or so and to kindly ask for any advice you can offer.
Somebody helped me at the start of this year, by suggesting I make a positive new intention, and try and put aside all the thoughts that have been clogging my brain. I don't mean the type of New Year intention e.g. to do all those outstanding jobs that pile up faster than you can progress them, but more thoughtful thinking type stuff.
In the final quarter of last year, again as in several previous years, anxiety got the better of me as the nights grow longer and it gets colder. Various things had promoted me trying to sort out and improve various medical issues, that in my mind hold me back from progressing many things I need to do. There is then the simple effect that medical appointments and the resultant things from them have to take priority over other stuff, and all the fun elements of life then tend to get put on the “too hard” pile.
I did try counselling again (CBT training) but after some time, it was decided and agreed that in my case CBT exacerbated the problems. CBT is good I think if you have unreal/unrealistic fears, but for the real stuff I think you just have to get on with it as best you decide. In my case I think that’s the key, getting on with whatever to distract me from the bad stuff with no solutions.
In the middle of that something much worse suddenly happened. I lost my sister to an aggressive ‘unknown primary’ small cell cancer. She was diagnosed in August and we lost her in November after two rounds of palliative chemo that failed to give any remission. For at least twenty years she suffered with stomach pains and that had got worse in the last few years. Nobody asked the simple question: Could the pain she had be cancer? And do I feel stupid, because if I had to pick one person who might have asked that, if they had engaged the grey matter, it would have been me. That will stay with me. It puts my CLL into perspective.
Getting out of the anxiety whirlpool is possible. I’ve done it now several times, but I don’t clearly understand at all the trick required. (After a lifetime) I realised in the period above that my sister suffered from anxiety, also my father who was also a CLL patient. It’s more common than you think.
Ring fencing (somehow) some of your time for the enjoyable stuff in life is probably the answer, and to stop trying so hard on all the stuff you realistically can’t fix.
As part of Paula’s original great series on how to cope with CLL Kevin (Foggymind) with help from others wrote “Part 3“ on how to keep your spirits up:
Anyhow Christmas came and somehow I escaped out of the downward spiral for the new year.
Now back to where I started on the positive intention for the new year. What to pick?
Hmmmm . . . Let’s not make it difficult (in principle) . . . I was a bit on the spot at the time. I was also asked to keep it to myself (which I have until now).
So what did I pick? Simple – Happiness
For once something that has no pre-conditions and other stuff & expertise required to make it happen. Just think it and do it. I am still trying and learning.
I do perhaps need a special alarm clock to remind me of this when I awake on cold dark winter mornings.
The black dog really is friendly – go on give it a stroke.
Any thoughts appreciated.
See – I’ve forgotten to mention my trivial CLL. At my last recent set of bloods its still happily in remission. I won’t think about the bone marrow – let sleeping dogs lie . . . Concentrate on the one that’s looking at you with a wagging tail. Go for a walk. I've realised that looking at the tree's is a form of meditation - you forget to think about the bad stuff.
Wishing you all well,
Ernest
P.S. Photo: I really struggled growing Nasturtiums last year, with the unusually hot weather. This is nearly the first and certainly the last flower that suddenly appeared just at the last minute in November.
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Thank you for sharing. Your post struck a deep chord with me and I suspect others. I believe your intention is a good one- happiness and anxiety are not compatible bedfellows, so if we can focus on the happiness, maybe anxiety will slip away for a while
Yes thank you for sharing this Ernest and it’s clearly a constant battle which many of us will be able to identify with.
I’m so very sorry to hear about your dear sister and misplaced guilt seems to follow the loss of any loved one. It comes with the territory and is part of the grief process of ‘what if’s’ and ‘why didn’t I’. Having lost my mum this year, I’ve ventured down this path many times.
In terms of anxiety, I think this saying is so true;
‘Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained.’ ~Arthur Somers Roche
We need to constantly endeavour to stem the flow and I wish you well with this and a healthy, long term remission.
Best wishes,
Newdawn
P.S you may wish to restrict your post to the community in view of personal subject matter.
Thank you for sharing your thoughts Ernest. You’ve been through a lot and no wonder you’re not feeling yourself.
I’ve had many times in my life where it’s been an effort to just get through the day. We all plaster on that smile and reply ‘fine’ when asked how we are whereas, in reality, we’re anything but.
Take things one day at a time, acknowledge your feelings and take heart in the small things that make you happy.
Well my friend you appear to have made the first and most important step towards controlling the anxiety!
You are absolutely correct when you say this is more common than one would expect. If you drill down to the causes it is usually a build up over time leading to that fear!
It’s easy to sit here and write positive vibes but not quite as easy to tackle the ‘Black Dog’ in the real world so you have done really well.
Over the years everyone will have times in their lives where anxiety rears it’s head. Be it about work, finance or health it appears slowly from the depths until , if you let it, it can overwhelm you.
Like many we all have copeing mechanisms.
I have been through anxiety at differing levels over the years. After running a business for many years and working through ressessions where it was touch and go for survival that brought financial pressure but also psychological pressure of failure, particularly when thinking of employees.
I mention this because it was through this that I developed my copeing mechanisms.
Having sat down with a pen and paper I wrote down the problems or perceived problems then by each one in Red Ink wrote possible solutions.
Over the years with concerns about health etc and through times of stress such as berievement I’ve used the same principal to clarify in my mind exactly what is going on.
I am always amazed the number of perceived problems that pop up on that paper that really are only problems in my own mind.
Unfortunately as humans we have the tendency to exaggerate our concerns on occasions.
Once I have sorted the wheat from the chaff I dismiss those concerns that are perceived.
I look at the others and categorise them into
A) Those I can do something about personally,
B) Those I need help to solve.
Once this is done I set about solving these problems by ACTIION. Either my own or with help of others.
I recall from a very young age being told “Face your Fears Head On!”
Once you start doing this those fears and the anxiety they breed slowly disappear into oblivion.
With health and cll or other conditions where things are out of my control I simply get on with life and face any challenges as they occur.
May not work for everyone but it works for me!
You appear to have found your way Ernie so long may you prosper.
Many thanks Geoff, hope you are keeping well, and still keeping the CLL and heart conundrums under control since the FCR.
On the anxiety that's a really good answer that you ought to put in a post of its own.
If you have been able to run a business, then you can probably sort most anxiety problems.
Splitting the stuff into what you can do without and what needs help is an important step, and that's a key one I think I fail on, and need to look at, without mentally overwhelming myself with it.
Anxiety is a tough one to overcome and it might be helpful not to try to defeat this enemy but to try and give it a place during the day to rear its head and free us from its clutches the rest of the day...
It may sound strange but ‘anxiety’ is real and its tough to deny its existence ... Every checkup with the doctor is anxiety provoking , every blood test , We fear the unknown and so are anxious but we can put it in its place , we know that hurdles will appear and are afraid but right now if things are manageable we want to be able to enjoy life ... Giving that anxiety a place to rear its head and putting it away afterwards can help.
Reading this newsletter is a good time to focus on CLL and then put those thoughts away until tomorrow.
During treatment we may have to let anxiety affect us for a longer period but to put it away when we want and are physically able to enjoy regular life for a bit ...
..... and if that doesn’t work , we can always turn to each other for support
Hi Ernest. Sounds like you have been through very dark patch. I am very sorry to hear of your sisters passing. Sending you my best wishes and hoping that you can find some solace. Regards.
Very sorry to hear about the loss of your sister, and how sad she suffered with stomach pain for so long before.
I have found for myself keeping very busy helps. I do best when I get exercise every day and have most of my day planned. I'm not always as good about the exercise as I should be, and I'm healthy at the moment so have no excuses. I also am on a couple of non profit boards and am active mentoring small business owners who aren't quite as far along as I am. As I write this, it occurs to me I'm most happy when I am helping others. Are you well enough to engage in a volunteer opportunity?
The only thing to fear is fear itself. I find that just taking a walk can do wonders, it is hard to even have a headache and walk at the same time. I lost my mother-in-law last Christmas day for which I was her care taker. It helps me to help others.
I remember taking a walk last year at a real bad time, expecting beforehand to talk about all the bad things. . .
Realised half way round that none of it had entered my mind. Can only think that looking at the trees (and you see more of them when they don't have leaves) must be a form of meditation and take your mind off the nonconstructive thoughts.
Thank you so much for posting. I doubt if there are many who cannot identify with what you have been going through. Working through all of this can sometimes take a while until we find our feet. I am so sorry about your sister, which made things especially difficult.
When we deal with the downside, it is easy to forget the 'little things' that give life pleasure. Gratitude also plays a big part in happiness and I think you not only chose happiness, but gratitude as well.
It seems that life is a series of adjustments of one sort or another. Sometimes adjustments are painful as they often involve loss. Loss can be scary as we adjust to the 'new normal'. But as you pointed out so well, there are opportunities not to short-change life, if we take the opportunity to do so.
Thanks again - you did me a big favor of re-posting Foggymind's and PaulaS' posts so I could review.
Beautiful photo and congratulations on your continued remission!
You are right about the links between the good and positive things. So if you can start with one positive thing the rest should hopefully follow.
In my mind I'm now on a walk with the friendly black dog. "Anxiety" (4 legs) has also tagged along behind (Hmm . . . its probably a long haired Jack Russel . . .)
Brave post Ernest. And sorry to hear about your sister. You have helped a lot of people in the forum in the past and I hope the comments that folk have posted above will help you too. Keep strong - it will pass.
How are you now Ernest? I really do hope you are feeling better.
Since finishing FCR six months ago, I have had parainfluenza B; gout; shingles; an SCC removal and treatment for two BCCs. I hoping for better over the summer!
Good to hear from you, and really sorry to hear about all the troubles. you have had a tough time, so really hoping for a smoother ride for you now.
My CLL is currently apparently still well in remission, and apart from an occasional hiccup the anxiety is under control at present by just simply keeping myself busy, and "doing stuff", however misguided some of that may be with my woeful physical abilities.
I am also a veritable "kid in a sweet shop" when choosing what to do. CLL does focus the mind, giving me an intense desire to get on with all the stuff my brain thinks needs doing now (well soon) whilst the health is good. I'm currently trying to shake off a cold, so need to get myself outside to get some fresh air.
Thanks for posting this, Ernest. I was very sad to hear about the loss of your sister... The loss of someone close to us is always hard, and can trigger a lot of painful emotions.
As Newdawn said, misplaced guilt is very common at such times. But remember that it IS misplaced. Your sister would never want you to have extra pain from such feelings. She would want you to go forward and live your life to the full, finding a “safe bridge over the stream”, as you put it.
I’m sure you know that, but knowing it doesn’t automatically take away the anxieties.
Some people are much more prone to anxiety and depression than others –something in our genetic makeup (and maybe due to our past experiences) and not our fault. Living with CLL doesn’t help of course.
To echo what Graham2222 has just said, Ernest, you have helped many people here in the past. I hope you'll find some of their experiences and suggestions will now help you too.
Best wishes,
Paula
P.S. I love the Nasturtium photo. Sometimes it’s the last minute and unexpected flowers of the season that bring the most pleasure, even if they're not the most perfect specimens. There is something very special about flowers that hang on in there, against all the odds.
Many thanks Paula for all the big help you provided me with all the others to get myself to write this post, and bringing myself to completing it and posting.
Now the sun is shining and it must be time to take a walk today.
What a great post! You are eloquent in your writing, and I hope you find some happiness in all this. I'm so sorry to hear about your sister. Please remember that a life of hindsight will find only a finite number of missed opportunities to change the present, but the future holds an infinite number. Every choice means missing something else. You are not the only person who missed the opportunity, nor was it your responsibility.
In regard to anxiety and cognitive behavior therapy, too much thinking can indeed be a problem for some of us. I like to go back to a Paul Simon lyric about an occasional moment.
"Have you ever experienced a period of grace
When your brain just takes a seat behind your face
And the world begins The Elephant Dance"
Laughter or even a simple smile can sometimes be the irrational response to a rationally dense situation such as ours. Petting that dog could be transcendent, or just a simply nice thing.
I remember how the world once veered into the surreal back in the late 60s and early 70s, and left me reeling. I get that feeling again now. But I recall many times in between when the spinning stopped, and I was able to focus on someone and something without feeling lost in the vortex. It's a change in the center of balance that does it, I think. The pirouetting dancer must focus on a single point.
I fix things for a living. It's a talent that's been rewarding in many ways. But it makes so many things look like a technical issues when they are not. Sometimes I should just say hi, or just listen.
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I also am on a couple of non profit boards and am active mentoring small business owners who aren't quite as far along as I am. As I write this, it occurs to me I'm most happy when I am helping others. Are you well enough to engage in a volunteer opportunity?
Treading water after finishing chemo; the anxieties as well as the highs!
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