Hello
It my first time on this web site, I read through a few of the notes, which reflected some of the things I’ve been going through, particularly the side effects. I was diagnosed with cml over a year ago I was 24. I was a way from home (student) so didn’t what to worry my mum and dad so I kept to my self, I told my brother and sister. There call frequently but I try not to worry them too.
For the last couple of days I’m finding it increasingly more difficult to deal with, before I rarely broke down even in the early days. It may be that fact that I have exams coming up. Question does it ever get easier?
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first timer
Hi Jane,
I logged on really late at night and found your post and it saddened me because it reminded me of me and what happened when my husband was diagnosed. I don't know if it gets any easier as the one diagnosed with CML. Gary was diagnosed in July 2004 and I was the one who went to pieces, very quickly in fact. I started having panic attacks and issues with socialising, as well as regular bouts of crying until it became so unbearable that I took myself off to the Doctor. I was the one who constantly worried about my husband and I too kept this from my friends and family. I now know that sharing my fears and problems with them was the best thing I could have done, it helped me enormously. I also went onto antidepressants to help with the panic attacks and stop the constant worrying and once again life has returned to normal. Don't be afraid to discuss any of your fears with your Doctor, he/she is there to help you get through this and help you in any way that they can. The added pressure of exams is sure to compound all this and I would recommend that you share all this with some one who can really help you. Log on here too as there are all manner of people in your situation who can offer helpful and heartfelt guidance with experiences of their own to share. Take care and good luck with your exams. RACHEL x
Hi Jane,
Welcome to the site.
I was also diagnosed with CML at 24 about 20 months ago. I'm pretty much the same I'm always trying not to worry my family too much. It sounds like I went a different route to you, I went on to have a transplant shortly after diagnosis. I have felt generally good although the last 2 months have been difficult as I've been getting infection after infection.
Please email me through my site by clicking on my name if you wanna chat anytime. I hope the side effects ease and you can continue with your exams.
Take care,
Martyn
hi jane,i was 26 when i was dx,i didnt tell my parents untill two days after as i didnt know what to say to them as i knew it would break there hearts,i think we all try and keep how we feel to ourselves as we dont want to worry our family,but the best thing is talking as its a big load to carry on our own,email me anytime on kathy.prudence@homecall.co.uk
im 30 next mth and im doing ok ,the side effects keep poppin up but other than that im fine,
take care love kathy
Hi Jane
Firstly I hope you are doing really well on Glivec, which presumably you are taking. Where abouts are you being treated ?
What a heavy load for you to carry on your own ? I know you want to spare your parents the trauma of your diagnosis but here I speak as a mother OK. I have a daughter of 25 and a son of 23. I would be so absolutely hurt if they hid such a thing from me. I actually hid my diagnosis from my own mother at the time [back in 1999],it was her 70th birthday and I didn't want to upset her, the party etc.... but 3 months later I told her and she was very upset that I had kept this to myself but eventually she understood. I would urge to talk to your parents, having CML is not the death sentence it used to be, there are so many new drugs coming along after Glivec and also at your age you have the possibility of having a stem cell transplant and getting rid of this disease for good. Have your brother and sister been tested to see if they are a match ? If not, then may be this is the next step. [I have had a transplant at the age of 52 and I'm will be celebrating my second post transplant anniversary in May - my diary is on the Home Page]
I feel so much for you as you must feel so bad keeping all this to yourself, the pressure upon you is intense and no wonder you break down - it would really ease your burden to share this with your parents - they are bound to be shocked and upset at first but then when they fully understand the disease and the treatments they will come round and I am sure be very supportive to you. I ask you please, as a mother, please tell your Mum.
Your Mum and/or Dad could join the forum here also, there are many carers who use this site as well as patients.
I hope I haven't offended you in any way, please think about what I have said. My private email is erees@hotmail.com - Good luck with the exams. I would be happy to speak with your Mum after you have told her if you think it would help.
Take Care
Elizabeth
I would like to echo some of Elizabeth's comments.
I'm the father of two young adult daughters, and although it would be very hard to come to terms with, I'd really want them to share any such issues with me. It's my wife who has cml, and one thing we agreed on when she was diagnosed (Sept 03) was that our daughters would be kept fully informed and nothing would be hidden from them. It certainly helps me to be able to share their mother's progress with my daughters.
I can understand you not wanting to give your parents any worry, maybe you could break the news by stressing the success of the new drugs available to treat cml - especially people's experience with Glivec.
I hope that you're receiving good care at whichever hospital you're attending. You can be assured of a lot of help/ advice here on this site.
Best Wishes
Paul
Hi Jane,
You sound so low - I do hope contacting this site has helped, as you're not on your own! I am a carer for a 13 year old with CML and also have children in their 20s. After diagnosis we felt very lonely and isolated, but finding this site has made living with CML seem not such a 'unique' experience!
Mums and Dads are all different and I dont know what sort of relationship you have with yours - but I do know that I would be desperately sad to learn that my daughter ( also a student)was dealing with such an emotionally draining thing without giving me the chance to help support her. So if its at all possible for you to do so, please let your parents know - and direct them to this website so they can see that CMLers learn to accept and LIVE with this condition. Yes, they will probably be shocked and scared to begin with, but the future is now very positive with Glivec and the other new drugs.
My 13 year old has his ups and downs in dealing with his CML, but since he started to use this site he seems to feel that he is part of a club and he enjoys being able to give others support and encouragement too.
Best of luck with your exams - my daughter is writing her dissertation at Uni and feeling the pressure! What are you studying?
Thinking of you, Kestrel
Dealing with CML and exams as well must be very hard. I hope you have had the opportunity to read the input above. I wondered whether to post because there is such a wealth of experience that people have already posted about. Then, I thought maybe a few more experiences might give you some ideas and make sure you know you are not alone in worrying. Everyone finds their own ways of dealing with it and you will too. All I can do is tell you what happenned to us and what we decided to do.
When Val, my wife, was diagnosed just 6 months after our wedding, we went into a real state of worry and anxiety. Some of it was because of the way were told by the hospital and the incorrect and depressing prognosis we were given. There were a lot of tears, some screaming and a lot of lost sleep. We didn't tell many people to start with. That was, like you, for fear of worrying them and partly because we didn't know ourselves how best to tell people. Finding this site was a real breakthrough for us - the sharing of experiences and the knowledge that there were lots of us who were going through the same thing was a huge relief. Any question could be asked and would get answered.
Your question was whether it gets easier? Yes, it does.It doesn't go away of course but it does get easier. We have learned more about CML and Glivec, including the way Glivec enables so many people with CML to lead nearly normal lives; we know that the prospects are better than ever as each year of new research and drug trials go on. Most of all, we realised we had a lot of living to do and we decided to get on with it. We both toyed with stopping work but we didn't and that was a good decision. Val loves what she does: teaching music at home to kids and adults.
We also decided that we would tell people about it - not everyone we meet, but everyone who is close to us. My work colleagues really did need to know why I looked so tired and worried; the parents of Val's younger pupils needed to know for the same reason, as did the adult pupils. We didn't want people putting their foot in it inadvertently by saying something inappropriate. So, slowly, but surely, we told family and friends as well. At times that was very hard because we could never be sure how anyone would react. A very few people couldn't cope with it and didn't know what to say or do. I had some work colleagues who never mentioned it again, which surprised me. But the vast majority gave us a wonderful response. We both feel we have been wrapped up in a warm blanket of love and kindess ever since. We have at times been really moved by what people have said to us and how they have been. For us, it was definitely the right thing to do because it wasn't just us that had to adjust to CML, so did our friends and family. They needed to find their own ways of dealing with it because it was too much for us to look after their worries about it as well as looking after ourselves. Dealing with it all on our own didn't feel good either and we are so glad we did what we did. With friends and family, we are having a wonderful time and living life to the full again (albeit with CML still there, but we are living with it, not dominated by it).
I hope our experience will help you to decide how you try to move on to easier times. Like many others above, I too would ask you to think hard about telling your parents. It is, of course, your choice, and it would be hard to do because they will worry just as you say, but once done, it is will give them the opportunity to share this with you. At the moment, they can't do that because they don't know.
I wish you all the best in finding your way to things being easier for you. Please come back here from time to time and tell us how you are getting on.
David