Who can you thank this week?

[AdrianUK]

I’ve noticed that having cll is like a battle for me mentally. One of the main fronts of that battle is the fight for gratitude. When I’m struggling about the amount of fatigue I feel, I try to force myself to remember that at least I have some strength and so to be grateful for that. I also find that if I keep my eyes open I am just surrounded by people who have done so much for me to help me since I had this wretched illness. And I’m grateful for that.

One of the best ways to win the battle for gratitude is to recognize something good and then express your thanks in a tangible way. A simple thank you to a Heath professional can be like rare treasure to them. They are used to hearing complaints about care. And yes there are often things to complain about! But if you can recognize good treatment and reward it in some way, that will surely help to reinforce that behavior which can only benefit yourself and other patients.

As an example of this (and believe me this kind of thing is something I’m having to learn to do!) here is a review I wrote for my GP practice on the NHS review site nhs.uk/Services/GP/ReviewsA...

A couple of days ago I confessed to my GP that I’d written that. Having found one of the GPs that I click with and ensuring that whenever I have a problem I generally see her has been very helpful. It can be done in most practices and makes my life less stressful for sure. There’s nothing worse than seeing a new doctor and having to go through everything again or them not understanding the situation. If I get asked again “so what chemotherapy are you having?” By someone who doesn’t understand watch and wait....

People sometimes say I am lucky to have such a good GP. And maybe I am. But, I partly made that luck by selecting her from visiting a variety of the other doctors there. I like her because she is efficient, thorough, doesn’t just do what I tell her to, and she does actually listen to me and we make decisions together. She’s seen me at my steroid crazed worse, and the second time helpfully pointed out that I wasn’t as bad as the first time! She noticed and commented that I’ve lost weight just by remembering what I look like. She once even reminded me that I do still have private insurance when I was in a state about not being able to speed up an appointment for possible surgery that I need! Basically she’s one of the main people who keep me sane. And you too can have a GP like that. It takes time and investment on your part. You may have to see a few before you settle on one. And you will have to work with that one, educate them, explain, and heavy doses of gratitude will really help.

One of the other battles for me is the battle for my own sense of significance. I’m used to “adding value” as the jargon goes. But now I can’t work there were several times in the last year I worried I’d never be able to add value again. Being an active participant on forums like this obviously helps that sense of contribution to the world. But so does expressing gratitude to others. Imagine how good I felt when my GP said to me on Wednesday. “Oh, so that review was you then! We all loved that so much we have printed it out and pinned it to our staff noticeboard!” I like to think that I’m some small way my review has made some of those staff members feel better about themselves and hence perhaps put them in a better mood for their clinics, which can only benefit patients.

Who can you be grateful to this week?

[annmcgowan]

Hi Adrian sorry to hear your CLL is is so problematic for you at the moment. I agree you have to be grateful for every positive in life especially when life is at its most challenging. It is this attitude that will see you through and your friends and family who you appreciate so much. I totally agree with your need to thank those in the medical professions for the work they do too. As a retired health professional myself I know how difficult their jobs can be. You are right to raise their awareness of the positive things they do for you on a day to day basis without being aware of the impact on our lives. To them they are just doing their jobs and they need to hear from us when they are doing it well as they get so much flack when things go wrong not always of their own making given the complexities of their jobs the politics and the lack of resources and funding currently being faced by our NHS services in the UK today. Credit where credit is due. It is important to point out negitive factors too but in a supportive and caring way. So many of our NHS staff are verbally abused which is unacceptable. I always reward verbally and in written form where appropriate and inform rather than complain if i feel something could improve. It is not what we say but how we say it that is so important in life. I am glad they found out it was you you deserved the credit. I hope your life improves. Keep us informed.

Regard

Ann

[AussieNeil Partner Administrator]

Quarry replied: "Can't agree more. As someone speaks somewhere on 'The Dark Side of the Moon' (the best album ever!), 'good manners cost nothing'......but they are very much appreciated!"

(Adrian, I've deleted the earlier version of your post with Quarry's reply and copied his reply above to avoid the confusion of having discussions on two near identical posts.

You can edit or delete your posts simply by selecting the option you want after selecting the 'v' under your post/reply - Admin)

[AdrianUK in reply to AussieNeil]

Hi. Sorry things sometimes get double posted. No idea why.

[cllady01 Former Volunteer in reply to AdrianUK]

Adrian, I have noticed some of my replies/posts get double posted. And it took me awhile to notice, but one of those posts usually has the cancel box in front of the reply box. So, I have been double checking to see if there are two posts and cancelling one.

Not sure why this happens, but as I reply here, this has a cancel box.

When I hit reply, it will most likely post a non-cancel-box reply. and I will hit the cancel box on this one. ACH--too confusing explanation.

[CLLCalifornia-USA]

Hi Adrian,

One of the ways I “add value” to my life, is sewing quilts for our local animal shelter. I am an animal lover and always looking for ways to help find them new homes. They look adorable wrapped in a homemade quilt that goes home with them. I enjoy sewing with a purpose on days when I’m indoors. Giving back is so good for the soul. Just thought I would share. Sally

[Mystic75]

Hi Adrian,

I think most of us couldn't agree with your post more. It is so easy to get bogged down on the negative (and very real) side of CLL, and letting it overshadow everything else.

Most of us have to spend so much time working, that it is easy to let it define us as to who we are. Add to the fact, that CLL can challenge your ability to do things - well, it can make it difficult to make that transition.

Please try to remember that you are truly significant to the people who love you. And you do add value in more ways that you are giving yourself credit for. And you are certainly adding value to your own health by taking the steps you did.

Thank you for sharing - I think we can all relate to this.

[cllady01 Former Volunteer]

Thank you Adrian for what I take as a reminder to express the thankfulness I feel.

[BeckyLUSA]

Whenever I get really down, I just remember what it is like when I get my IVIG treatments. I get them in the same area that people are getting their regular chemo treatments. When I see the people in there that are so much sicker than me, it makes me grateful all over again. Sometimes we complain about being tired all the time or catching every little bug that comes along. Plus, we have a cancer that “can’t be cured”, while a friend with some other cancer has it diagnosed, takes treatment and it’s over and done with. Even though I hate the term “good” cancer, I do know what it means. I prefer to tell people, the cancer is probably not going to kill me tomorrow, but eventually might. The chemo room can be a very scary place, and it makes me grateful for all the good things I do have in my life. The other good thing about CLL versus other cancers, is we do, usually, have time to re-evaluate our lives and can zero in on the really important stuff, because we have learned not to sweat the small, unimportant stuff. Just being around to see grandkids play sports, or compete in a competition makes me thankful to be alive, even with the pesky CLL!

BeckyL USA