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In praise of getting CML

Hi all,

Ive seen some new members arriving and in many parts of Europe, its cold, dark and locked down. So...open question for the folks of the forum, which some may find a little odd

What are the positives you've experienced from having been diagnosed with CML?

Maybe it caused you to look at life differently, make a change to your lifestyle, or take that leap you'd had on the back of your mind.

In the UK:

free drugs if you are under 60 in England

frequent medical contact

frequent blood analysis

free 'flu vaccine

free pneumonia vaccine boost

food parcels (now finished)

vitamin D in the post from early 2021

priority for COVID-19 vaccine if you are under 70

 

All in all, other medical conditions may be detected sooner.

Hi Evah.

Prior to diagnoses in January 2014 I believed I was indestructible, never seemed to worry about anything, after diagnosis the “brakes” were applied and even now I don’t believe I’m the same person I was, but I’m extremely grateful for the care, and development of medication that has allowed me to still enjoy life to the full.

take care. Pete 

 

It's a good question: I definitely saw positives once I was over the initial panic.  Mostly they were about life in general, rather than healthy living (I've always been an active person with a reasonable diet, if perhaps a little too fond of a glass of wine or 3).  I remember several weeks of real clarity and perspective: small things associated with modern living that would have been irritations in my pre CML world became utterly unimportant - as they should be - and other small things that I had stopped appreciating like wildlife, a sunny day, taking time just to enjoy the simple things in life - that sort of thing - suddenly became important and appreciated again.  I actually enjoyed that feeling and I strive to remind myself of it and perspective generally all the time.  I also got involved in some small fundraising for my hospital and a few other voluntary things, which was just a small bit of giving back but hugely rewarding.  I realised every time I went to the hospital there were patients there in a much worse position than me and that I really should appreciate what I have more than I did.

I also took a decision to slow down and get work and life in the best balance I could. I had a very stressful job in a highly pressured environment when I was diagnosed and I decided to get out of that and go somewhere much less full on.  That involved a trade off of course but I've never regretted it. 

Richard 

Hi All,

I share what others have said already.

On dx Feb 2006 at age 61 it was a huge shock but it led to early retirement and voluntary redundancy and made me slow down and re-evaluate life-in retrospect it made me accept that I was not going to work forever and it was the best event in my life to get out of a highly politicised and unfulfilling work environment.I took up lots of hobbies (that hitherto I had little time for ) such as car maintenance,gardening,decorating, walking. reading etc.I became a full time carer for a number of years and also delved into meditation and Buddhism.I could go on.

Lifestyle changes have been immense in that in my mid 70s now am able to do 8km walks on a regular basis;my diet is not quite vegan or vegetarian but a  recent review showed lipids and blood pressure etc in the best state for decades.

The obverse of course might be would I be still here and if so what would I be doing if I had not been dx with CML.? At the back of ones mind there is always the nagging thought about why was I dx -was it the radiation from all that flying or the job stress or the unhealthy lifestyle or all of these-this is an age old chestnut for us all.

However if one is dx with CML at a young age with say substantial financial and other commitments there may be not so many positives to reflect back on or in the current moment.

Keep safe

John

CML saved my life, although I would have preferred a different path.

As a result of the diagnosis, I had more blood tests and exams than I ever would have had on my own.

These tests revealed I was a heart attack/stroke waiting to happen let alone sick every year. As a result of this 'wake up call',

I researched as much as I could on CML and blood chemistry/biology in general. I learned a great deal and put what I learned into practice.

As a result, my artery health is like a 30 year old - reversed atherosclerosis (D + K2), blood pressure is normal (magnesium, exercise) and overall health is greatly improved - even though I felt fine prior to diagnosis. Most noticeable is my skin. You can tell a lot about someone's health by their skin.

Hi, I have absolutely no positives.At diagnosis I thought I would lose my hair ,not live long enough to see my grandchildren start school and grow up ,leave my Husband behind who will be useless without me .I was so tired and struggling with tummy problems ,swollen eyes the dreaded rash on Imatinib.I had to leave my job which I loved ,all my friends and family feel sorry for me .I am frightened to go abroad even before Covid ,don't have my bottle of red wine which I miss so much because I don't feel very good in the morning .I am afraid CML has ruined my life .I am very thankful  that our drugs are keeping us alive and my Grandchildren have just started school although both their teachers have just tested positive for covid and are at home .I am not really living just existing .This probably is not what you want to hear but it's how I feel .Denise.

Great replies guys.

In the thick of a diagnosis, it can all seem dark. I suspected i wasn't the only one who, with time, saw the advantages of the changes brought by cml. There's plenty of space on the forum to express negatives, let's stick to the topic.

My own case having an unexpected diagnosis at 42, i had often worried excessively about employment. I allowed myself not to worry about that anymore.

As a younger person, i struggled with depression and had frequent suicidal ideation. Being faced with a medical crisis and the changes in mindset that came with it, i saw my medication as a daily affirmation of my will to live and find joy in doing so .

I never considered that i had a battle with my cml. Instead i was grateful for all the immature blood cells that kept me healthy right till near diagnosis. Given the genetic component, i consider cml an integral part of me, that i can accept.

I would say I am healthier for sure. I look after myself better, sleep better, go to the Doc if something's wrong (was lazy about that) and having 3m bloods is a useful 'look under the hood' and keeps things tight. 
I exercise more, feel lucky this is so treatable...I think perhaps it's made me more appreciative of the little things.
I'm aware I have been very lucky with limited side effects and that may well have clouded my view had it not been the case.

One negative, I guess, is almost feeling fraudulent. I don't personally think of this as a 'cancer' per se...it's an uncontrollable growth of cells to start with so it gets labelled with that but there's no tumour to contend with. I am sure some of my friends wonder what the fuss was all about when I got diagnosed in 2018...I feel normal, look normal, behave normally...am arguably in better shape than most of my healthy friends. I can eat and drink wine with impunityand travel and cycle and run...it hasn't changed anything really other than 'being there' and meaning I drink a lot more water and don't eat as much (Tasigna).
I don't FEAR this whereas I would fear another type of more sinister growth.
Everyone's experience is different but I would also agree with others that there are many positives to take from all this, not least of all we are all alive to contribute to the forum...we are the lucky recipients of some pretty awesome science. 
C.

 

Sadly almost no positives for me either except that I no longer care about money and spend whatever I have in order to enjoy life as much as possible by travelling. Also, probably not very inspiring or what people want to hear, but that's the effect that CML has had on me.

When I was diagnosed I almost told myself immediatley that CML was either going to be the worst or the best thing to have happened to me. (Weird but stick with me)... I told myself this is going to be the biggest mental battle that you will most likely have to fight during your lifetime.

I can't say if it is at either end of the spectrum but the main benefit for me has been finding the practice of meditation which I do almost daily for 3 years. I suffered many many years with anxiety and stress about all sorts of trivial/none trivial things. I don't think I would have found meditation if I hadn't of had my diagnosis which was the most emotionally painful time of my life and for me is the best self discovery of my lifetime. Its taught me to quieten my mind and my negative thought patterns, to live in the moment and be gratefull for all I have. Its taught me to have more self compassion for myself and to take time out for me and me alone. And it has taught me more importantly that we have very little control over much that happens in our lives, and it isn't our suffering that causes our pain but our reaction/response to the things that happen to us that brings that pain. A little deep but makes sense when you really thing about it. I have never been one for wishy washy things such as meditation but I thought I have nothing to loose. It was very hard at first but things started to change in me after about 6 months - 1 year.

I defo look at life differently, anything negative that happens in my life tends to effect me far less than it used to. Like Martin I have very little care for money (which can be dangerous), it comes and it goes. I don't care too much for my career anymore, I did loose a lot of passion for somethings which is slowly returning.

Of course the vast majority of use are lucky to have medication that will allow us to live to be with our friends/loved ones, watch them grow up etc I can't ask for a better gift than that. May it continue.

I havent changed too many of my lifestyle habits, I defo drink far less alcohol which is a good thing, but I am more conscious of what I put in my body for sure.

Alex

I see many similarities between me, Eva, CM-elon and Alex.  I was also 42 when diagnosed, with two young children. My initial concern was not seeing them leave school but that passed over time as it became clear things were under control and that my life expectancy was unlikely to be affected by CML. They have now both left school and I'm enjoying seeing what they are making of their lives now. I lost my father when he was 62 (and I 32) to a brain tumour and that, together with my CML, made me focus hard on trying to enjoy the moment and not stress too much about the future (including not relying on being able to do things later in life if you can do them now).

I have never seen it as a "battle" with CML - I felt that to see it that way would be too stressful.  I decided to try to go with the flow, not push against it and learn to live with it.  I got comfortable with how things were going and trusted my doctors. My consultant once said to me "let us do the worrying for you". One of many brilliant bits of advice she has given me over the years.

Nearly 12 years post diagnosis, I still don't take anything for granted but have been pretty much convinced for some time that CML won't be the cause of my demise...  Which does indeed make me feel sometimes like a bit of a fraud.  I went on the UK stopping trial - which was obviously a bit of a risk and involved volunteering for another bone marrow biopsy - because I felt it might be helpful in aiding the identification of patients who could stop.  That has offset my feeling of fraudulence a little, at least in my head.... and a bonus is I've been able to stay off TKIs for some time now.  I know I am, in the grand scheme of things, pretty lucky.

I travel, exercise (tho nothing to do with CML really) and enjoy a glass of wine.  I drink less than I did - and indeed when I started on imatinib I pretty much stopped completely because I really didn't feel like it to begin with.  Now its a case of hangovers getting worse with age so I just ease off.

I wish everyone good luck and health.

Richard