Yesterday a relative asked me to a coffee morning, I said unfortunately it coincided with my haematology appointment. She asked why I went to haematology. I never mention the "C" word, so I said I had a problem with my blood and bone marrow. She gave the usual remark of "Well you don't look ill". Then her husband butted in with "you should eat a healthier diet that would sort it out for you". So I said well actually it's a cancer called Essential Thrombocythemia and I take chemotherapy for it. They both looked at me and said they'd never heard of it and it obviously wasn't cancer as I looked so well.
No I didn't bang their heads together but I felt like it!
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lizzziep
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It's so hard...i saw some great friends and colleagues last night who I haven't seen in ages and they were all saying you look great. I feel like such a broken record saying I don't feel it but thanks. I'm used to be the last one standing at the bar but just had to leave at midnight as couldn't manage any longer. Stay strong. There a number of booklets online for family and friends on our conditions and what we go through physically and mentally. If you haven't shared then maybe that would help? X
Hi Lizzie, what a shame you had this response, I have had it myself often but I am not always very polite with my replies, I won't put on here what some of them are! Maz x
Two so called friends said to me after a missed coffee morning date that listening to my health problems was akin to listening to the War and Peace Saga, another remark was So what's supposed to be wrong with you now. People are just so crass.
I can relate, girl at my work said " are you not getting chemo" i said "yes it's in this bag" I've just collected it from pharmacy" she looked at me as if I was a liar. Said it is in tablet form, again looked at me as if I was lying. I said it does not only get administered intravenously again still looking at me as if I was lying 😲😤😲😤
People simply do not believe you are on chemo if don't have it intravenously! I've had some very odd looks if I've told someone I am on chemo - they usually say but you've got hair!!!
Hi Lizzie, gosh I know how you feel, I like you do not go round telling people that I have ET, but was at a friends funeral last week (all very sad) and was talking to another close friend about my Haematoligy appointment which I had this week, "all good may I hasten to add" anyway as she knew about my condition thought is was nice of her to ask, then another friend who was eaves dropping asked me why I needed to attend the Haemotologist at the hospital or had I meant that I was just going to have some blood tests done, well I was a bit taken aback, but told her that I had ET and threw in JAK 2 positive, for good measure trying not to laugh as I though she was being nosy listening to my conversation, she then said what the hell is that so explained what it was and that it was very rare, well just like your friend said to you, she told me maybe I needed to change my diet and do more exercise, I nearly choked on my glass of wine, I then told her that I had radically changed my life style if that is what she was referring too, drink at least 2ltrs of water day, eat VERY healthily, take plenty of exercise , OH!! and also have to take daily a Chemotherpy drug called Hydroxycarbamide, and Asprin, well the look on her face was exquisite, but she came out with I cannot believe that, you do not look ill, and walked away, I then turned to my friend next to me, who was falling about laughing by this time, and she said to me the trouble is Jean you look so good no one can believe you have cancer all be it a rare type. As some of my friends know and who have been very supportive over these last few years, that I am not a quitter, and intend to carry on for many more years to come god willing.
My Barry, when I told him Laughed and said maybe it was because life has not been kind to her over the years or put it his way she has not taken very good care of herself, and that she is jealous of the way you look.
So the tale of my long story is that I now know who my real friends are, plus the wonderful support of this forum.
I now just smile sweetly when told how well I look - it's too much effort to explain what's wrong. The only time I really looked pale and ill was when my HB dropped to 75 - but a transfusion improved matters and now I look pink and well even though some days the fatigue is still overwhelming.
Oh yes do I know that feeling the classic "but you look SO WELL" just after you have finally spoken up and said you feel lousy when someone's asks how's you - and yes that almost insinuation that you are lying or exaggerating somewhat. Oh well at least we are all in the same boat. I do keep a few bits stored from here and other sources that I email on to people sometimes when I feel that may just listen. Sometimes it is ignorance but when from friends it is hurtful and empathy is something anyone can learn - the wonderful ability to put yourself in the shoes of someone else and try to feel their pain. Glad we all have each other to swop notes with eh!! All the best.
Hi Grrr, you've got us all grrring with frustrated laughter.I'm grateful, I have been very depressed since seeing the Haematologist on Thursday, and was even thinking of not using this site any more. Thank you for a burst of spontaneous laughter this morning. X
Bridie - don't give up - and don't give up looking at the site - I personally find it very therapeutic to read about other peoples problems, some are much worse than mine, and to be able to join in, even if it's only for a moan......
Oh Birdie, don't give up on us rare creatures, we are all here for each other, we all have a lot of living to do and enjoy our lives as best we can, we will all have our bad days, but we also have our good days as well. So laugh when you are feeling down and the world will laugh with you, cry and you cry alone, that's what my mum taught me, and believe me I do it. So please stay with us.
Hi lizzie , Grr i agree ! its the same for me ! my hubby friend said to me well your lucky ,at least you dont have chemo intravenously, that makes you ill , i replied i think it depends on where the cancer is in the body ? I get told by friends i look better than i did last time i saw them, i always look more tired because im on glaucomma eye drops and they make my eyes look brown under them , i use concealer to a point ! but yes i agree with everyone on here but i find alot of people with cancer do look well , my best friend did she had terminal bladder c and it wasnt untill the last week of her life she lost weight and wasnt good and she didnt lose her hair on intravenously , we all know the chemo is very varied with different types of it . Regards Holly
Hard to believe people would just dismiss your health concerns under the 'if you look well, so you must be' label. Although I was diagnosed with JAK2 nearly 3 years ago noone ever used the word cancer until last month when the MacMillan nurse walked in my haematology appointment and smouldering myeloma was added to my diagnostics. It was a real shock but also there was the 'what do I do with the information now' phase to deal with. Some of my close friends and relations know, some don't. Didn't want to have to deal with people looking for 'cancer signs' when talking to me but also helped when one of my friends said she had googled what I had and fully understood why I had been looking stressed. It is a bizarre situation to be in with looking better than healthy patients while having this condition you can never cure.
I am so pleased I have found this group as makes me feel normal 😍. Thank toi
Yes I'm registered as disabled but able to walk around, sometimes, people find I'm disabled, and "Well you don't look ill?" maybe like yourself, I should do more exercise, healthier diet? I'm a bit overweight, side effect of medication, I'm perpetually on a diet, even 10 miles on an exercise, hopefully once a day! You can see as they walk away and glance back thinking 'he's a hypochondriac, and we have to pay for him!' As you say GRRR!
Ps - does their opinion really matter? That's the question I ask myself when people are like that. My boss at work has been a bit of a non believer but I've come out the best as OH are progressing my early retirement due to ill health.
Another thing I always say: my friends would be supportive, not critical- so this kind of person is NOT entitled to be my friend and their opinion is of no consequence to me!! Kindest regards from Aime Xx 😺😺
Hi, I've had this too and always tell people, "cancer doesn't show" and ask them to think if they'd know someone had breast, bone or other cancer. They always concede that they never know until things are very bad, so I point out that they talk every day to people who have cancer, they just dont know it. People can be very dumb sometimes but it's not worth us losing our calm about. Don't worry about them, just take care of yourself, all best wishes, Frances.
Most of the people I have told about my husband's PV have been kind but sometimes a bit embarrassed and maybe not quite sure what to say. I think it would be awful and very hurtful if people made snide comments or didn't believe me. How dare they! I share your frustration. Just take comfort from all the lovely, caring people on here who DO know what it's like to have this rare and complex illness. Love and keep strong. 💗
Regarding medical staff who just don't know very much about MPNs....I tried this strategy: we had had a disappointing experience here the GP we went to admitted she had heard of PV but didn't know much about it. We were concerned about my husband's symptoms and medication for other health issues (surely the GP should still have the patient overview, even if haemo in charge of the PV) but she didn't seem particularly interested or helpful. The feeling we got was that it was now the responsibility of the haemo once the referral was done. A few weeks later we made an appointment with another GP from the practice but this time I sent a letter in advance explaining how we felt (i.e. really needing the GP to support us and be there for us) and including a link to the MPN voice. I wasn't able to go with my husband to the appointment but he didn't think my letter had made much of an impression on the doc. Ah well, at least I tried. Perhaps it might work better for others.
I picked up a very useful small leaflet from guys, which explained clearly that what we have is a cancer, I don't carry these around with me but what I do is next time i know I'm going to see the ignorant person I take one and give it to them. They usually then get tongue tied and start asking sympathetic questions. It's about education I suppose. I am 45 and am always being told how well I look and the usual oh you don't look like you're ill.x
Thanks for the replies, I think I will just cross them off my Christmas card list!!!
Regarding medical staff, I know 4 nurses and none of them had heard of ET until I told them I had it, one of them had mentioned it to others at the hospital where she works and others hadn't heard of it either. Neither had the locum GP I saw recently. We must be a very rare breed!!
I say I have blood cancer the myeloproliferative neoplasm essential thrombocythaemia, a high platelet count.
This covers all the bases I think.
I have even had a doctor swear blind it is not cancer, dwp staff with totally unrealistic expectations and family members get stroppy because I can't do what they expect.
Still keep on troshin' as they say round here (aka Chin up!)
I know this is an old post but I have only just seen it. I recently went in the big C centre attached to my hospital and was told what you have isn't cancer, you're not going to die from it and you have a normal life expectancy!!! Well it was 2 weeks before I could stop crying enough to be able to write and complain. I received a written apology telling me I was quite right and it is a cancer and to go back to the big C centre. I didn't go.
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My Heamatologist said I most likely have ET and mutation tests showed I have JAK2
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