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Anxiety

Dear CML Supporters,

Am posting as my Psychologist is away on holiday at the moment and I have wanted to open this up as a topic for some time. I feel strange writing this when people other postee's are writing about very real and serious issues, but I'm hoping that there is room for this kind of post also.

I was diagnosed last September and am responding really well to Dasatinib. It's been a hell of a year, and I know how lucky I am- being diagnosed with a rare cancer, being bombarded with tests and hospital visits, only to be told that to all intents and purpose I just need to take two pills a day and I'll be 'normal'.

I have a great support network and a good consultant and psychologist that work closely together and who have really made all the difference. My wife and I were trying for a baby, and so we had to begin to go through fertility treatment, but I'm over the moon to say that she is now 10 weeks pregnant from a natural conception, which we are made up over.

As I have mentioned in previous posts I have suffered from OCD and depression since my early teens- I'm now 33 and I'm finding the pressure of everything almost but not quite overwhelming. I am in a cycle of thinking about dying quite a lot , and then hating myself because I feel like I should be so thankful to be responding so well to treatment.

I feel a lot of guilt about getting something so rare and somehow cheating the more serious treatment that others have to go through, and to this end I am constantly looking for something else to be wrong. I've had a cold over the weekend which has really laid me low, and I've spent the past four days convinced that I somehow have the symptoms of testicular cancer- I am constantly checking my body for lumps and fretting over every ache. This is obviously a huge waste of energy and a trial to my loved ones as I find it difficult to stay motivated and positive about real life.

My question to you supporters is:

How do people focus on the positive and has anyone else had this nervous distrust of their bodies/ hypochondria following diagnosis?

I am doing Tai Chi and find that this helps enormously. I think it's probably normal to fear death, dying and being in pain, but I want to get my head straight to be there for my wife and to prepare for fatherhood. I have great anxieties that I'm not going to be around to see my kid/s grow up, and this is really upsetting, so I was interested in hearing from people who have been/ are going through similar emotions.

With thanks and best wishes to all-

Adam

Hi Adam,

I think you are very brave to open this topic up and bare your soul in this way...I too can relate to having harboured some negative guilt feelings, but what I do with any negative thoughts is drown them out with absorbing myself in anything that gives me great joy. Be it a wonderful bloom in my garden, a nightingale singing or music which I fill the house with.

For you, the biggest joy of ever will be when you absorb yourself in the new life and all the love that this will bring and all the love you have in you to give to your wife and child will flow.

My heart goes out to you Adam.

xx

p.s. also, one day you may find yourself laughing at your own situation...there's a few of us that have experienced this. A couple of years ago, I found myself completely over-whelmed by preparing for Christmas with my grown-up children coming to stay and expecting the house to be festive and joyful. I found myself pouring my heart out to my elderly mother and wailing that I didn't know what on earth was wrong with me. She responded this to me "Well ducky, I expect it's cos you'v got Leukaemia"...I laughed and laughed til I cried, then I got on with being festive and it all came together. I  haven't looked back since.

Dear Adam

I don't find any of your emotions or worries suprising or wrong, even though your situation is complicated by your medical history.  I don't have that but my main fear on diagnosis was certainly for my children who were 7 and 9 at the time, although naturally I was very anxious about my own future.  However, I resolved at the start to keep calrm and not to let it overwhelm me, and it certainly put daily worries into perspective.  I've found it strangely liberating as a result. I'm not complacent about the CML or any other potential illness (or even daily "stuff") but aside from making sure I get anything checked out, I try not to worry too much, take my Glivec as prescribed and do what the doctors tell me. As you say, it uses up nervous energy worrying and doesn't achieve very much in the end, especially if you're doing well.  Tai Chi sounds like a great idea for keeping calm.

As for guilt, I know what you mean but instead I feel mainly gratitude - and no one is going to begrudge you your success, not least because it will give encouragement to others.  I do now, like many patients, have a genuine desire to put something back, though I don't feel an obligation to do so as such.  I do what I can to support Leuka, the charity at the Hammersmith, which works hard on improving outcomes generally, for all leukaemias.  I find that gives me a real sense of helping those who have helped me, and it's fun too.

Finally, congratulations on your impending fatherhood. Don't forget to enjoy it!

Richard

Adam - I feel hugely sympathetic and empathetic for what you are going through. I have worked with people with OCD and that in itself is enough of an issue to be dealing with..... add all the other ingredients and it's no wonder you feel so overwhelmed. I have also suffered from clinical depression in the past and know how awful it is... to keep looking for reasons to die in order to escape.

You have been really brave by opening this up and there is a LOT that might help. Have you tried Cognitive Behavoural Therapy (CBT) with Hypnotherapy. All these techniques are just designed to help us notice how our powerful and imaginative minds are working and how we can lessen the effect they have on our emotions and moods. I know a good practitioner down Surrey way or you could find the name of someone closer to you.

Then there is visualisation, relaxation and meditation - lessons or cds. Writing down all our jumbled thoughts, fears and emotions is also useful in my experience. Accepting that there is a dark side as well as a light side to life has been a great help... so that I no longer expect there to be some perfect, halcyon days somewhere in the future... so learning to BE HERE NOW at all times (as someone else said... seeing the good and wonder in every small thing!)

I was also not well a few weeks ago and it felt a bit like the end of 'my' world... so having even a cold can be like the straw that breaks the camels back.

Do get some professional support - I am sure you can become 100% well and live to see your little one grow up.

All the best Adam

Beth

Hi Adam,

I just wanted to say that I can completely relate to what you are saying and thinking.

I am pleased that this is being discussed as sometimes I feel that its taboo to discuss it as we should feel lucky to be here and just taking 'two tablets' a day.

The way I seem to be able to get away from thinking like this is by exercising mostly swimming for me. I think you get so into what you are doing that you dont have time to analyse or over think things. It sounds like Tai Chi obviously helps you.

I was diagnosed May last year and am 32 on Dasatanib and we are also 9 weeks pregnant. So our situations are very similar. All I keep on thinking is once this child has arrived being able to see life through there eyes will stop me from thinking negatively and being so scared of what may happen.

Do get in touch if you like, but I think you are doing the right thing by talking about it, so keep on posting.

Carlos

Hi Adam,

Congratulations on the upcoming event. If you think that you are concerned about your health, I have a big surprise for you after your child is born. You can never imagine how interested you are going to be in the baby's poop.

One way to overcome the fear of death from CML is to take a look at the statistics. At one time (15 years ago) CML was a fatal disease. Today, hardly anyone dies from CML.

The great thing about you is that you are bright and that you understand your problem. Get to the experts who treat this and follow their advice.

I'm wondering where you are with your CML. Achieving CCR gets you a number in the Zero Club. I see that you are on Dasatinib. Were you on Gleevec first or did you go with Dasatinib right off.

Zavie

zmiller@sympatico.ca

Dear Adam.... thank you for talking about depression on this forum. The emotions we all struggle with after diagnosis need to be talked through and you are right that the subject is often dismissed as we are told that we are luckier than others because we have access to life saving therapies. 

I hope that the responses to your post have helped both you and others who are too 'guilty' to admit to negative feelings given our 'lucky' tag as CML patients. 

You are dealing with your feelings in a positively proactive  way and are obviously very aware of the consequences of negative thoughts/emotions. I suggest that you might consider adding 'complimentary' therapy to your Tai Chi practice. I have found a homeopathy to be very good in the area of emotional life and I also suggest that hypnotherapy is a quick way to 'cut through' what can be a long journey in the building up of self-esteem.

Congratulations to you and your wife and best wishes for the upcoming birth of your first child. It is a wonderful thing to be a parent, but you are not alone in feeling overwhelmed at the prospect of parenthood ;o) I think most of us with children have experienced those feelings.

thanks again for talking about your experience, I am sure you have helped a lot of people that  read this forum but never post to it. 

Best wishes,

Sandy

Once again this site and its patrons have responded with such kindness and support, and I'm really grateful for those who have posted with advice and kind wishes. It is a comfort to know that I have allies in my battle gainst CML- one that I am presently waging in my head as much as in my body. ADJL x

The subject your have introduced -of the emotional struggle that we, as people that have been diagnosed with a life threatening disease- must face, is important and one that I believe we should face up to and discuss more openly.

All of us here have at least one thing in common- the experience of diagnosis- a day none of us will ever forget. I believe that this common experience is what binds us together ... from that day do we become different? maybe, but we eventually become stronger for having to face our own mortality, the day we were told we had CML and we might not live out our lives as we had hoped. I feel that it is this experience that binds us together in some intangible way and is the glue that keeps us coming back here, to this forum, in order to make contact and make sense of it all.

Your willingness to share your own vulnerability has, I am quite sure, given many of us valuable support in a way that you might not understand. You have displayed and shared your core strength with all of us here- whether we post or not- and this is  as important as all the information about the drugs and therapy posted here. When we talk of separating mind and body we are in danger of losing the wonder of what is is to be a human being........ to be scared and strong, to be sure and unsure, to be well and unwell, all at the same time. We have an infinite ability for self healng, sometime we need to call upon others to help, but in the end it is the strength we find within ourselves that is the key. We just need to learn to accept it.

Sandy