I have E.T. JAK NEG and was diagnosed 10 years ago.
In spite of informing my family of my illness, my children still ring me to ask "What is it that you've got Mum? " every time they have to fill in a medical form.
A breakthrough last week, my son asked actually asked about my recent blood test! A first in 10 years!!
Anyone else's family members show a lack of interest?
To be fair though, I do tend to play down symptoms and refer to my E.T. as my blood thing. Maybe I'm just trying to protect my children (grown up adults with their own families). I have found that I am happy to tell non- family members that I have a blood cancer but cannot bring myself to say it to my husband and children.
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mol56
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Hi mol, , I guess many on here will know exactly how you feel and as parents our natural instinct is to shield and protect our offspring / loved ones. I know I do with my son and my dad but my son isn't stupid and I guess he knows more than he lets on as he's always ont t'interweb. My dad knows only what I choose to tell him which isn't the full SP. The reason is I lost my mum when she was a relatively young age to a related blood condition and I know dad worries about me.
To re-assure you I talk much more openly to non-family about the more difficult aspects of my MF. If you put yourself in your kids shoes maybe they are afraid to ask in case it upsets you and them also coz as mum you'll always be there for them and as you said you play it down. My son rarely asks me probably for the same reason.
As for my long suffering caring wife we have no secrets and as such she always twigs it when I play my 'cancer card' to try and get for a pint.
Cheers mol - JR
My partner has et, and as an observer, I wish his family asked more, about him and his condition. Where as I talk more openly with my family and they ask more. The point I think I am realising is about protectionism. I am looking for support, whereas he is protecting his family (parents) from worry.
There are such a lot of different dynamics in play at one time.
I have pv and et, and was diagnosed about 7 years ago. I keep my family informed, but as I get on with everything as normal, they see me as relatively normal. They call it Dads blood thing. My wife is fantastic and supports me all the way. Whilst I feel sometimes it can be a very private and worrying condition talking about it helps me immensely.
All my friends know, and I feel this helps too. Until the last year or so I had no contact with anybody else with this condition, but reading accounts on MPN Voice and other media has helped.
I'd say fine to play down your symptoms, but share with somebody close, it REALLY helps!
I do sympathise. I tend not to discuss it with our adult daughters although they do know I have a serious blood cancer. We mummies want to protect our children don't we?!
My husband hid his head in the sand until I took him - very willingly I have to say - to a forum about 12 months after I was diagnosed ( 6 years ago with PV)
Claire Harrison's opening statement was " you're all here because you have a rare and serious blood cancer"
I think until then he hadn't bothered to really listen to me, so that was the best thing I ever did and he's now INCREDIBLY supportive.
I have about 12 good friends who have always been aware and are brilliant.
Nothing like a bit of support, but perhaps if your children ask, then it's time to tell them.
I softened the blow by saying it was serious, but perfectly treatable and I would live a normal lifespan - however it is NOT inherited, but does make me feel totally washed out sometimes so to please be understanding if I'm occasionally like a limp lettuce!
They muster really well and are wonderful bless them, which at 32 and 26 - elder one married to a sweet chap too - who all treat me like the queen when they come to stay.
Yey!
Hope that helps.
Do be honest with your husband though, he's the one who should be there for you and who I'm sure would be glad of your honesty. Why not take him to a forum. One in London in July - see the MPN website.
Hi you have touched on a very tricky point. I too have minimised my 'blood condition' and husband and grown up sons dont know anything about it, not even its name. At one level this suits me, i feel I am 5% PV and 95% healthy and get on with life. So when I have fatigue days due interferon injection or headaches when HCT goes too high husband knows and if really poorly will accompany me to the hospital. This happens rarely. But their lack of knowledge makes me feel as if I am fussing. I have PV for 10 years and have had many ups and downs but try to keep it in its 5% box.
if I shared the full information with close family then I might become a 'victim' or poor thing and I dont want that. So i have decided that it is better on balance to keep quiet and feel unappreciated emotionally but it is very hard sometimes.
Thank you for all your comments and thoughts. I may have given the wrong impression. My husband is supportive but does need reminding every now and then that I cannot do all the things he would like to do. I need to pace myself. I think it is because I have had E.T. for 10 years and apart from giving up work 9 years ago (at the age of 55 - was a kept woman for a few years!) I carry on with my life as before E.T. So far my husband has been reluctant to attend a forum. I have been to 2 meetings and do tell him about them. I bring home literature but I don't think he has looked at it. If he has, he hasn't commented on it.
I have found that if my haemoglobin levels and iron levels are low (because of the meds) I have low energy levels and am inclined to feel down and even a little depressed so normal family requests e.g. baby sitting, having grandchildren stay overnight or even going out for lunch seem huge mountains to climb.
When blood levels improve and platelets are not too high, then I feel much better and cope with most things.
Just having a bad day I guess. Great support from you all, thank you
Hi....do sympathise with all you say. This might help a bit. For years my mother had PV and we all thought we understood the condition (including nurse daughter-in-law), but looking back, we just didn't! Then, after she died (at a good age), I developed ET and began much more to understand her condition, but now find exactly the same....family and friends still mystified by it, try to understand but just don't!! But we are told we are 'very very rare', so that makes us feel very special! even if we don't want to have it or all that goes with it...looking back, also, I used to be mystified by a friend having treatment for vitiligo and then when I developed it, began to understand. There is an old Indian proverb which I misquote but it is to do with walking in another's moccasins for some miles before one can understand. Hope all this makes a bit of sense and do wish you all the very best. But at the end of the day, think, unless someone actually has the 'disease', others do not quite understand, however much they want to....Tinkerbell13
Hi Mol, Only 1 of my 3 daughters, the eldest at 24, asks me how my bloods are. Yesterday I took the 3 of them and my 2 grandchildren for afternoon tea. We live in different counties and it was the first time in 3 years that we had spent time together, they don't get on very well! On the way there my middle daughter asked me if we were getting together because she thought I was going to tell them that I was dying!!!!! Poor love. I felt terrible for her, although she didn't look that bothered. I now dread that day.
I've done exactly the same! I also call it "my blood thing"! My sons are in their 30's (amazing as I'm only 25!) however I have never fully explained my condition (ET) to them. They know I am on chemo tablets but haven't really asked any questions. They don't ask about my blood test results, although that could be a man thing as my husband also tends to bury his head in the sand where any sort of illness is concerned. I think because I look well they aren't concerned.
Maybe I should play the cancer card and get sympathy?? No I don't think I will, I knew someone who always said she had cancer (she hadn't) and her family spent years worrying about her, tending to her every whim, and waiting for her to die of it!! She lived well into her 80's and died of something different.
I hope we all live long and happy lives, extra long if you have children - just to get our own back on them for all their misdeeds when they were young!
I want to be one of those elderly ladies who makes loud remarks about people/things and doesn't care who she offends - mainly to annoy my children.
I have an aunt who is in her 90's and does this all the time, she really enjoys doing it too.
Love your reply...made me laugh. YEs I have the same reaction, again because we want to 'protect' our 'children ' in my case ages 50 and 52 !!! from worry etc. with the result that it is never mentioned, my fault. I think most of us do our 'tiredness' in private. Long my it be that way, as long as friends and family understand that somtimes much as we would love to, we cannot keep up with the pace and need a rest.
I generally play down my ET, although I don't know if it's for myself or my family.
I have two children 20 & 14 and have only been with my new partner for a few years. I have never wanted to worry my kids and my partners mother died of cancer and so I'm not sure he can deal with the C word in any shape size or form again. So to them its just a blood disorder.
Unlike you I have difficulty talking about it to anyone one, I was diagnosed in 1996 at age 19 and at the time it wasn't classified as a cancer, just a blood disorder. So it feels really strange to say to people that its a blood cancer now.
At the time of diagnosis and after being given treatment my parents had their doubts about the condition as I had been prescribed Chemo and repeatedly questioned the doctors to whether I had cancer or not. They were told categorically that I didn't have a cancer. I only discovered myself the change of classification sometime in 2011 whist browsing the internet. I mentioned it to my Mum and my closest friends but I suppose it doesn't have the same gravity as someone newly diagnosed or when its coming from a doctor, and it doesn't help when my parents were told point blank that its not.
I often feel like those closest to me lack interest but I've had the condition for 20 years now, so in all honesty people have probably just lost interest
Its can be hard dealing with my emotions by myself and I'm sure my family just think I'm putting it on when I'm tired by 5.pm but I blame it on the meds.
Thank Goodness for groups like this - a great place to vent and share your thoughts
Hi Shankei / Cham - You touched me with your open and honest post especially your frank admission re dealing with your emotions. And you're bang on about our forum being a great place to share. Cheers to you JR.
Ah well that's why we all have good 'big' ears but bigger hearts. I think you will find many of us are just like you in that respect. Please keep sharing as it will help you along the way a tad. . be good JR
I share some of the same experiences. My children (10 and 13) just know it as my 'blood thing'. They don't need to know any more than that at this point in time. My husband knows all about it but we don't really mention it, although on my bad days when I struggling with the fatigue he can see it in my face just how rubbish I am feeling. My mum has never really discussed it with me because she doesn't want to accept it! My dad has been really good and has opted to read up all about it so he is informed and understanding.
I think because most of the time we look well and we just try to get on with it, plus we haven't lost our hair and are not in a wheelchair, it is easy for others to forget what we have.
A close friend has been recently diagnosed with cancer and not a great outlook. He is in his 40's and has 2 young children. I am trying to support them and has made me put into perspective my own medical problem, which has been put right to the back of my mind! At least I will see my children grow into adults!
Reading your post is like reading my own life story. None of my family show any interest in my condition (PV) and I am often hurt and feel that they do not want me to talk about it so I don't. I have to wonder, is it because I don't talk about it with them that is stopping them from talking about it or are they just not interested. Finding this site I have found a new "family" who I can discuss anything with. None of my siblings live locally and believe me I would love one of my sister's to come over one day for a coffee and for them to actually say "Jill, how are you feeling?". Luckily I have the most amazing husband who treats me like a queen and makes sure I talk about anything that is bothering me.
Have you thought about asking your children why they don't talk to you. Maybe they don't realise that their lack of interest is hurting you more than opening up to them. They may feel better knowing they can talk to you rather than them feeling the subject is taboo incase it upsets you?
Hope I have helped in some way. You know you can always count on this site for support. God bless xx
Hmm but my doctors have not classified this as a blood cancer though... for the calr +ve mutation. They mentioned that only minority of the patients will gradually developed into leukemia
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