I really need to talk to someone about what I’m going through, who is able to understand…
I’ve been diagnosed with Chronic myeloid leukaemia few weeks ago, and as I understand there are more tests to be done, but I’m Ph+
I’m 37, proud single mom of three golden kids, who till now managed to balance work, fun, art, family, friends, etc… somehow, and was a role model for all my friends. I was a mountaineer, I painted mural that was 20m high myself and made my own cheese… And I did it all with a smile!
And my life started turning upside down last winter… With having to move out from my home, business going down… and now- leukemia. At first it came as a relief, because prior to diagnosis I was wondering what’s wrong with me? Why am I so depressed all the time, why don’t I just get up and fix things? I even went to psychiatry one day, because I had suicidal thoughts, thinking they will keep me in the hospital, but my medical insurance wasn’t right… So even that didn’t work out
At first when I was diagnosed, every struggle before made some sense, because having to move out I moved closer to town, where they have better hospitals, and I wasn’t thinking I’m out of my mind anymore, I was just sick.
But now I’m less relieved… I’m thinking that I will feel fatigued for the rest of my life, and I don’t have a clue how to handle that! I can’t do all I need to do without my strength…
I read some of the comments in other threads, and somebody said that now is a time to put everything else aside and take care of yourself. Such a wonderful thought! But what if one cannot?
I have a boyfriend, but our relationship is breaking up now because I’m less tolerant. It’s so hard for him to accept both my kids and my sickness. That’s a lot to handle. And I just can’t listen to people complaining right now, so that makes me grumpy.
I’m desperate! Will it go away? Do I just need to go through this phase before I accept it?
Hi @Katarina and I an so glad that you have found us, I hope you do not mind me asking but where do you live?
I really related to you saying that you did it all (perhaps not the painting of murals and the cheese making!!!) and all with a smile on your face, I have a default smiley face that I have had since childhood.
It must have been so scary for you suddenly feeling so depressed and having such a lack of energy.
Perhaps give yourself time and you will learn how to manage your fatigue, I found writing a cause and effect diary helped me understand myself better.
I attach this on fatigue from the Blood Cancer UK website . Blood cancer and fatigue | Blood Cancer UK
Perhaps just concentrate on yourself and your 3 golden children for now, that has cut out quite a lot.
Perhaps it might not go away, but in my experience, given time, you will come to terms with it and accept it.
Yes, the most important thing is to look after and be kind to yourself, ask for and accept help if you need it from family and friends, you have already had the courage to ask for help by posting here.
If you feel depressed talk to someone and see if there are any free or low cost services locally, your feelings and thoughts are so natural.
Please do keep posting
Thanks so much Erica for answering, you’re an angel!
I live in Serbia, and I hope it won’t be a problem since this is a UK forum?
I just don’t have a similar forum in my country…
I got sick in a meanwhile, kids brought something from school. And there’s no better teacher to be grateful for what you have then loss, since now I feel even worse
I really appreciate connecting to you, since my friends and family, although they love me, they can’t really understand and relate…
I’m interested in “cause and effect diary” that you mentioned, I would like to learn more, you say you post it here, the link you provided?
You are going through a life changing experience and trying to make sense of it all
My suggestion is to seek some sort of counselling via your team
6 years ago aged 49 I was diagnosed with a form of PTSD from a life changing diagnosis. Counselling was over 12 months I also had mindfullness one to one at my local hospice
I was having physio at the hospice along with complimentary therapies where I could talk freely to the girls which helped a lot.
I’m a single mum of two 15/19 at diagnosis
My kids have been amazing I have been honest about everything from the start. For the most part I have encouraged them not to be my carer and they help me when I can’t do something
You can still be a role model but in a different area of your life how you deal with sickness
Mourning your old life pre diagnosis is natural and go with it
I say the old me has gone and I’m the new me with myeloma
Keep hold of the thought that once treatment is sorted that you will make cheese again
You will paint a mural that may be 5m high next time
You will adjust
Your kids will get you through
You will get you through this
You will find people will go and new people will enter in this phase of your life
I feel your words are disarmingly true, both painful and healing. “You shall know the Truth, and it will set you free”. I am in a mourning, I feel that, I even dressed black yesterday, although people around me don’t understand it. I figured out just yesterday that it would be good to go somewhere and just cry it out for as long as it takes. But I’m afraid to leave the kids… They’re 7,10 and 14.
I will ask for counseling. Maybe there is something.
I would cry in the shower and when I went to bed but I did have times that the tears flowed even when my kids were there
They were taken aback a bit and I blamed the steroids
I would reassure them I was ok and this was part of the process
Me and my girl have had tears together
My son I have seen cry once I’m grateful to his best friends who support him
It’s ok to let them know it’s ok to cry and cry together
Keep talking to each other
It’s ok too that other people don’t understand or they may not know what to say or how to console you.
My best friend would not hear me when I would say about making memories
I was told that planted seeds eventually start to grow
Hi @Katarina sorry to hear that you got sick, unfortunately children do get illnesses and bring them home.
I asked where you lived as to make you aware that healthcare and treatments can be very different in different countries.
Yes, I agree that family and friends just cannot understand in a way that we can because we have gone through similar on here.
An example for me is fatigue, I do not think anyone can understand what it feels like if they have not experienced it.
My fatigue can come on by what personally stresses me out, emotional, phycological, physical, practical or medical events. The fatigue can come on immediately or up to 48 hours later.
Therefore by keeping a diary saying briefly how your day had been like late to pick the children up because the bus did not come (that would cause me emotional stress)
I felt alright in the morning but in the evening I felt fatigued.
Next day did housework in the morning and went to work in the afternoon it was great to see my friend.
I felt really tired in the morning, although I had slept well, and I felt just tired in the evening. (just a normal day and it felt good to see your friend)
This can be done in an ordinary diary.
What you can tell is that the stress of worrying and being late to pick up your children can bring on your fatigue.
The link I posted is about living with fatigue.
There is some interesting information on the Blood Cancer UK website.
I find the bath or shower or an open space with nobody about are good for crying or screaming.
Please do ask any questions you want to.
I have another chronic leukaemia Chronic lymphocytic leukaemia (CLL) and I was diagnosed 19 years ago and I have always been on ‘watch and wait’ or active monitoring at regular intervals.
If you are not feeling well then looking after yourself is even more important and please keep posting.
I was also diagnosed with Chronic myeloid leukaemia at 37, it was quite scary at first diagnosis because I knew very little about it and to some extent I think it sounds much worse than it now is. My haematologist was really relaxed about things and the basic answer is you take a pill once a day and for the majority of people you carry on as normal and will live just as long as anyone else. The main change to you life will be regular blood tests, which aren’t that bad (I have one every 3 months) and to be honest you will be one of the most regularly tested people you know which cant be a bad thing as any other issues will get picked up long before someone who isn’t tested so regularly
However I’m not going to tell you not to feel what you are, everyone is different
My advice would be to stay away from too much googling about Chronic myeloid leukaemia as a lot of the information and studies etc can be difficult to interpret correctly. Ask your specialists not google about things you don’t understand fully.
When I was still being diagnosed my fatigue was very bad at times, it has mostly cleared up now and for me when I do get a bad day or so I just have a treat (cake) or a big dinner and it goes away Keeping fit helps as well! Give the treatment a few months and then see how you feel and find out what works for you regarding fatigue. There are lots of resources available on it.
9 months in to treatment, generally nobody would know I have Chronic myeloid leukaemia and my life is pretty much the same as it was a few years ago and I think that is the case for most people
