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Hi guys,

This is my second post on this forum. I am Nancy, 22years old.

I don’t know who to turn to, to speak about the feeling of powerlessness and helplessness I have. I genuinely don’t know what to do, I cry all the time, it’s been a year in my treatment & I thought I would get better all together.

I have been doing CBT for my anxiety, except I haven’t been able to see my psychologist for about 5/6 weeks, she can’t find a way to squeeze me in, somehow it makes me angry.

Reaching for help and getting slapped in return.

I have been waiting for months to receive a diagnose (again), as I have a bowel problems that’s just not been looked at.

I don’t understand why this feeling is constantly here, I try to be in charge of my own life, I got into uni but everything seems to be crumbling or not going my way at all, each time I do something positive, whether it is financially, emotionally, socially, physically or mentally.

Why does everything have to be a fight ? What can I do please ? 

I need help & I don’t know where to get it anymore

Nana,

Sorry to hear you are still having issues.  Did you ever sign up for a one on one contact through the Leukemia & Lymphoma Society  to talk to about what you are going through?  You get to talk to someone that has experienced what you are going through with the same cancer.  I reach out to my contact when I have a question and she is wonderful!  I could not have asked for a better person to talk to.  She has helped me a lot.  

I am 57 and was hiking through the hills in West Virginia in June this year.   Physically I was in great shape, worked out, no aches or pains and up at the crack of dawn each day.  What I am trying to say, even though I am going through CML as you are....I just cannot imagine getting this at age 22.  The LLS will not "slap" your hand.  There is a call in or you can web conference coming up this month on the 25th.  Highly recommend signing up for that.  Also you should contact them and find where chapter in your area meets.  Please do this.  I know this will be a positive experience for you.

 

Onekayaker

Thank you for replying to me again. I have tried to sign up but it seems I have to be in America..? It would be a good idea to talk to someone who’s had similar experiences. Where I am based, I might be the only one of my age to have this condition, I was never in a young people’s ward, there was only elderly around me and probably suffering from different conditions. 

I am slowly realising that I must have some sort of trauma, from my pre-diagnose self to my post-diagnose self.

I hope to be hiking too one day, I’m glad you’re able to do this. I haven’t quite understood the last part of your answer but hopefully it will be a positive experience.

Best 

Nana

Hi Nana,

I am really sorry to hear that you are struggling. The great thing about this forum is that it is a place to turn when questions need answering or we just want to reach out for help.

I was diagnosed this year and I am 38 married with 2 small children. I consider myself to be young too! I understand your feelings when you go to the clinic to be surrounded by older individuals of twice your age or decades just older! I often wonder to myself how the hell did I get this! And still do! One thing I have had to learn in getting this is that life simply isn't fair. And how we got it doesn't help us really move forward. We have it and we must press forward by supporting each other when times are hard and believe me I am a man and I am not afraid to admit I've cried plenty over the last 5 months an had feelings of complete despair. To get around this feeling of lowness I remind myself that in some regard we are lucky. We have great medication, with great prospects ahead. We pop a pill once or twice a day and see the quack once every 3 - 6 months for them to tell us everything is fine which should be the case if you take your meds on time. We luckily god forbid don't have to have Chemo, or radio therapy or even a stem cell transplant. I remind myself of this when I feel like shutting down.

I fully realise this is as much of an emotional/mental battle as it is a physical one. Even if not more! I have suffered undiagnosed for most of my life with sometimes severe anxiety which is closely linked to depression who knows I may even be depressed but I don't feel it. I do get down from time to time but no more than your average person.

Here's what I have been doing that really helps alleviate my stress and anxiety and this has become my routine just like having to pop my pill!

I meditate daily (I started with 5 mins a day and now I am at 20 mins a day) There is research (And you can google it) that meditation is known to shrink your Amgdala (The part of your brain which deals with emotions and stress responses) It's so effective for anxiety and depression because it calms that area of your brain and actually shrinks it over time. People may laugh but it's fact. When you first start meditation you'll get annouyed with your mind racing and wondering off. Stick with it and I recommend this book called Unplug which is easy reading https://www.amazon.co.uk/Unplug-Simple-Meditation-Skeptics-Seekers/dp/11... and there are mobile apps one I use is called Calm and another is called Headspace. Also meditation is known to repair DNA and strengthen telomeres. Heres one link there are many https://www.sciencedaily.com/releases/2017/06/170615213301.htm

Whats also really helped me is to understand why our brains operate the way they do with situations and how we respond to things in life (Namely stress). Also coincidentally linked to some of the bits I mentioned above about your Amgdala it's called The Chimp Paradox https://www.amazon.co.uk/Chimp-Paradox-Management-Programme-Confidence/d....

I personally feel like there is so much to be understood about the mind and how it affects our body or even changes it in good or bad ways. Its not hyperthectial nonsence its proven fact and you can research it yourself when you have time. Understanding the mind helps you understand you and when you understand you, you wont stress yourself for feeling or reacting the way you do.

Personally I find doctors pretty useless when talking about mental health they just say take this pill. Things in the mind can't be evaluated like the body. I have found simply by educating myself its made the situation that much easier to cope with. Unfortunatley there is no magic sauce to make all these feelings completely go away but this will really help I promise you if you give it time like its helped me. Hand on heart I am much better than I was when I was first diagnosed!

If you are able regular exercise is also good for your body and your mind. Maybe even just a light jog to release some endorphins (The happy drug)

If you ever want to talk you can reach out I know what you are going through and things will get better. Everything is temporary even life itself.

I hope this helps you in some way.

All the best

Alex

 

 

Hi Nana

In an earlier post you said you would try to get to the patient conference in Birmingham which is on Saturday this week. Is that going to be possible for you? I hope it might help to meet people who have been down similar paths to the one you are on.

My Bad Nana....that was a poor post on my part.  I was trying to say just a few months ago I was a "go getter" running around, feeling fantastic!  Then I got a phone call from my GP that my blood work showed higher than normal wbc.   I cannot at this time do anything that I have been doing before being diagnosed.  Cannot imagine what you are going through to get CML at age 22.  I did notice you said "uni" a British term in the original post and thought you might not be in the US.  The people that run this forum are very knowledgeable and from the same part of the as yourself.  The Leukemia Lymphoma Society being in the US though, I do not know why you could not use the web to sit in the meeting on the 25th other than it will be US eastern time 4:00pm.  I had a follow up post yesterday but not sure if I did not reply right or it was deleted because I typed web addresses in it with the LLS info.  

 

Onekayaker

Hi Nana,

There is interesting research suggesting Curcumin (Tumeric root) can effectively treat depression:

https://www.psychiatryadvisor.com/mood-disorders/curcumin-depression-tre...

I take two - four grams of Curcumin per day (C3 complex with bioperine) primarily as an add-on support for CML treatment, but noticed also that my mood and 'clear thinking' improved as well. My wife takes Curcumin also and she reported the same benefit.

Perhaps it could be helpful to you as well.

Over time, managing CML from a mental health perspective gets easier as you perfect your dose, manage side effects and realize you are not alone.

I appreciate the time and effort you put into your answer. Thank you for providing me with these links and tips. I will look into it and hopefully I’ll be able to get to the place you are, which I understand is not perfect but being able to cope would be a fantastic great step. 

I understand how my mind affects my body, I suppose it’s a start, whether it’s my anxiety or depression. I’ve had the belief that I gave myself this cancer, the stress & Anxiety,  the bad diet, the lack of sleep...

I have low motivation for things that requires physical effort, I’m scared to break my body even more, but I will try to allocate time for meditation, and I will get back to you.

It would be a pleasure to be in touch with you, I hope you have all the support you need around you, & thank you again ❤️

Hi there

Thank you for your message. I really wanted to attend, I know it’s coming up this week, but I haven’t got the financial resources to attend, it’s been bumming me out. Hopefully I will be able to next year. 

Nana 

Hello Onekayaker

I’m so sorry to hear that, Don’t apologise, I may have read that wrong... 

I can relate, the summer before my diagnose I was going in adventures in the forest, I was on my feet all the time, and after the diagnose Imatinib broke me.I see my friends do the things we talked about together, & I feel set back in life, I’m afraid that it will never get any better if I already have such issues at 22.

How have you been doing ? What keeps you going ? 

About LLS, I tried to register but they won’t accept my address. I’m not sure why I can’t change the country but maybe I should create a fake one. I’ve been browsing on Clic Sargent, TCT and this website at the moment.

Nana

Hi Scuba,

 

Thank you so much for that input! I had no idea some spices could affect your mental health, I will try to include some in my diet. 

That & the meditation is what I will focus on.

How long have you been on treatment ? Is it a matter of time before I get on top of my mental health or the cucurmin is what helped you ?

Nana x

 

Nana - I applaud my fellow CMLers for all their suggestions and encouragement to you - all I can say is, "ditto." 

Here are some more ideas you might consider, if it helps:  I got very severe depression on imatinib and spent the two years on it feeling extremely physically ill.  The fatigue sapped me of all motivation and perspective.  I was hopeless and helpless.  A few things turned my life around:  I persisted (don't know where I found the oomph to do it, but I did) in finding a psychotherapist.  Second, I changed doctors to a CML specialist which greatly helped my almost insatiable need for reliable info and insight into what was going on, not to mention increasing my confidence and optimism.  (I finally felt taken care of by someone who didn't need my research help to stay on top of things).  Third, I was switched to a different TKI, and in my case, Sprycel was a godsend.  The depression lifted, I felt physically well, my CML plummeted, and the fatigue improved enough for "me" to surface again.

You might feel better on a different TKI.  If your doctor isn't serving you well, find another. Don't give up on finding a good therapist and sticking with seeing him/her regularly.  You deserve help in your life.

 

No problem at all l. A problem shared is a problem halved as they say ;-)

Your comment about giving yourself CML really does resonate with me and I too think that high level constant stress has caused this (I didn’t mention it because I thought people would think I am mad). But as I said we can’t really change that fact but we can learn to cope through time and healing and coping mechanisms. 

The good thing with meditation is that it requires no physical effort but some mental effort for sure. You know that feeling when you’ve had a good nights sleep and you feel refreshed well that’s  what you feel like with daily meditation when you’ve been practising it for a period of time. It even removes you from a situation for minutes at a time where your mind is clear and free. Free from worry, stress, sadness it all goes when you get better at it. I’d never have thought I’d ever do anything like this but I was on a bit of a mission to clam my anxiety before I got diagnosed and go figure I got CML which only increases life’s already big worry so my knowledge of mediation really really is the best discovery for my anxiety and I know it has an effect for those with depression!

I am going to try Circumin also as suggested to see if that makes a difference also.

Good luck with things and if you need a chat just message me!

Dear Nancy, I am fairly new here but want to give some input. I am much older than you but always felt young for my age. Having to give up my home health nursing job was a big deal but I felt like I could no longer handle it mentally or physically after I was diagnosed with CML. I am on Spyrcel and have really had only minimal side effects such as fatigue and low Blood levels requiring adjustments in dose. In 2005 I had breast cancer and at that time I believe I went thru something similiar to what you are experiencing. I couldn’t cope with the illness. Eventually I found a psychologist that helped me through with relaxation exercises and I listened to a lot of positive coping tapes. I also went to a support group.  I did go on an antidepressant/ anti anxiety medication.  Which eventually I was able to taper down. It really helped me get through it all. What I want you to remember is that you are not alone. We are here for you. You will get thru this. As time goes on things will get better. Hugs, Dawn

Hi Nana

I'm sorry you can't be at the patient day. It should be available to view via on-line streaming (which is quite scary for me as I am talking about my experience of CML), but I haven't seen the link anywhere. I am sure Sandy will put it up here when it is available.

Best wishes

Alastair

We can get lost in todays sorrows and miss yesterdays pleasures.
What I do when I am down is think about the times when I was happy.
Tomorrow’s pleasures are today’s efforts. As always.
Today I’m going to work in my garden and harvest my cucumbers.
Tomorrow I’m going to eat cucumber salad.
I don’t think about the big things.
I think about the fun things.

And I have CML.

Romo

Thank you for your insight, I sometimes feel so ungrateful for the little white pill that keeps me alive and sometimes I feel angry that I am depending on it for good health.

I will try to find the right person to talk to, although I don’t know the differences in types of counselling.

My doctors seem to be reluctant whenever it comes to changing treatment, it took a while for them to take me off Imatinib despite the massive intolerance! She told me in few words that there are only so many treatments available at my disposal knowing I’m 22. I suppose I get stamped down and don’t insist.

I hope I can find a CML specialist as well when I move to London. I’m hoping to adapt to my treatment as you did, hopefully the fatigue, low energy/ lack of motivation will fade.

I appreciate you taking the time to answer this thread, I hope to not give up 

 

Nana x

 

Yes it’s a crazy thought but who knows, I don’t know why it wouldn’t be valid, the way my therapist put it with panic attacks and CBT strongly resonated in my ears too! I carry that cross. Although you are right, it is what it is!

 

I hope I find the right remedy to cope with this CML, It is a life journey & I pray it goes smoothly.

I will try to incorporate meditation in my life, I think having had depression in the past, the CML only accentuated it, just as it did your anxiety.

Thank you for your support, & I didn’t know we could message privately on this platform ?

Good luck too 

Nana x

Hi Dawn, 

Thank you for your input, it’s reassuring to hear other people’s truth whether we have differences or not. 

From what I gather it seems I need to find the right support, but it’s hard to find the right one. I feel discouraged, I don’t know why but it seems like a lot of work to me... It’s mostly about failing to get the support I need when I have done the necessary to get it. I’m afraid of the things that happened to me in the past, happening again in the future. It breaks me even more, I seem to take everything personally and I can’t shake it off.

I have a specialist nurse who’s been very helpful with the administration side of things, & I only hope to fall into the right laps. In the UK, it seems referals take forever to happen. I don’t have the means to go into the private sector and I‘m not sure that I can be picky with the NHS.

I even tried to change haematologist, or get a second opinion once, I was turnt down. 

Maybe what I need is medication, but having to rely on this makes me anxious. I will try the support group and pray to find the right therapist.

Relaxation tapes seem to be a good idea, unfortunately my body itches so much I can’t go through with it!! 

Thank you so much for your message xoxo & I hope to get where you are one day.

I’m sorry I’m not trying to be negative and I’m grateful to hear from all of your experiences.

 

I will try to make the best of everything I’ve read here and come back to you soon 🌹❤️ a thank you everyone

Just to say that I agree meditation can help and if you are in the uk and resources are few, vipassana meditation offers donation based residential courses in meditation, although you must comit to 10 days (conditions strict during the course) 

https://www.dhamma.org/en/schedules/schdipa

 

Hi Nana

As well as meditation what about trying Tai Chi or Yoga? I found Tai Chi kept me sane on diagnosis 9+ years ago - and I still attend my class. It's therapeutic effects are well known in the medical world. 

Just a thought as I was so sad reading what you are experiencing at such a young age.

Take care,

Best

Chrissiexx