I was out with a friend this week, she is a bit or rather a complete health freak!!! Which I except, but she started spouting on about my treatment with Hydroxy, and started to tell me that I should try and eliminate it from my life as it very toxic, and can cause cancers to spread, well I know that, but then she started to tell me that it is derived from Mustard Gas which was used in the first and second world wars!!! Asked her why she was so concerned, to which she replied that she had been reading a book by a Dr Laurence Magne a renowned American doctor?? On Cancer free for life. And that it tells you to change your diet completely.
Well I was starting to get just a tad cross to say the least, as it is my body not hers, and what did she expect me to do, give up on the drugs that have helped me and go on a vegan diet, basically she said YES, well I did not know what to say, and when I got home I was quite upset, and felt how dare she dictate to me, and now feel that I do not want to see her anymore. So why is that people have to tell you what you should be doing and scare the living daylights out of you when In my mind they really know nothing about our MPNs.
So friend or not a friend.
Jean
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Superwoman
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Not a friend! Friends support us, they don't bring us down. Maybe say to her that you don't wish to discuss health issues at all at your meetings - if you enjoy her company. Best wishes, Frances.
Oh you poor thing. As if it isn’t stressing enough to cope on a normal day, to have such negative comments directed your way doesn’t help one bit. Perhaps you should direct your friend to MPN Voice and see if she’s still adamant about your diet and meds. I wonder if she would follow her own advice if your situations were reversed?
I can’t say friend or not - just somebody in need of re-education, or a zip on her mouth!
All the best to you and try to rise above it - YOU are in control, not her
Oooh ouch!!! - I know some people feel entitled to make comments on what others should or shouldn’t do however I hope your friend has some other redeeming qualities (as far as treatment for an MPN goes I would guess a nut roast would’nt do the job)!! All of us have a condition we really would prefer not to have + are on meds’ we would prefer not to have to take but it doesn’t help having a friend lecture. Have confidence in yourself. Anne-Marie x
FRIENDS? Hi Andy. I take your point about not having any friends if they are insensitive or crass but (am having a whinge here) 3 longstanding friends have gone from my life, one, because she said I never sounded pleased to hear from her when she called(usually for an offload) and didn't want to know what was wrong with me, two others I realised spent all their time telling me about other peoples' problems who I didn't even know. They too weren't interested in my condition. So I let them go. Now we come to neighbours. Several pass my door every day yet have not once called to see if I'm OK - they do know about my ETbut I don't go out much because my legs won't carry me and I keep falling over. I also have CFS and. Bronchiiectisis . I have had repeated bladder and chest infections this year and have been completely on my own. I went to A&E twice last week with a urine infection and a neighbour was passing as Inwas being monitored in the ambulance and said to my daughter "hope everything goes well",. I virtually collapsed at the hospital. My daughter who came with me went home and left me. I see her once a week and know she does what she can and is probably finding things difficult. So, as far as friends and family go, I guess I have to take what is offered but I see no one other than my daughter. I'm feeling very unwell still after a week on antibiotics and would have loved some TLC. All this combined with ET is just a bit much. Can't seem to find my own inner strength right now. End of whinge and thanks for listening. Mary
My word, you do seem to be in the dumps - don't suppose the time of year and weather are helping, I certainly get the blues a bit from late October through to March.
I am assuming you don't drive? Are you claiming Attendance Allowance? And associated with those questions, have you condidered getting a Mobilty scooter? It would get you out and about, might be quite fun and as a badge of disability might encourage others to pay a little more sympathetic attention.
Andy
Jean sorry to hear you feel your friend was dictating and maybe it's her way of expressing how much she cares about you. I have not heard about this doctor but I have read many books and am studying nutritional therapy in order to help myself live a healthier and fuller life. Unfortunately I do believe our cancer is more complicated than people realise. I will have a look into this book and this Doctor. I personally do agree with diet playing an important role in all health not just cancer, but I also believe that sometimes we also need certain medicines too and it's not that simple and there is no one size fits all answer or miracle. I have people giving me their opinions all the time and sadly they are just trying to help but sometimes you have to just reach out touch their arm and say gently, thank you I understand your concern and I will do my own research but I would also appreciate your support. Tell her honestly how you feel but you know her better than any of us on here, and you will know if she is coming from a place of love. All the best, Louise xxx
p.s. I forgot to ask has your friend herself followed this advice and changed her diet to a plant based diet to prevent cancer?
I found this link.. I must admit I am anti-chemotherapy but there are other drugs out there to explore.
My friend is a vegan, and keeps very fit with Yoga, the gym and salsa classes. She is also a beauty therapist, trained in Aromatherapy, Reflexology and many other treatments for the mind and body using stones and crystals, she is amazing at what she does, and in a way she feels as if she is helping me, but it was all a bit of a shock when she brought it up about the mustard gas. She knows that I have completely changed my life style not that it was bad before. Thank you for your comments, I have taken on board a lot of what you lovely people have said, she knows about my ET and in a way she felt she was doing me a favour by delving into the why and wherefores of it all.
Oh that's not fair! I'd send her an email and explain how you feel and that if you are to meet up again then she needs to respect your choices and that although she probably means to be helpful this is not good for you right now. And really do not worry about the mustard gas thing - it was found that soldiers subject to it experienced changes in bone marrow and research was done on this in the US military - not for medical purposes but which did lead to a drug which was found to be effective against lymphoma. I don't know anything about the content of these drugs as my knowledge comes from being a historian but this was just one line of research quite a long time ago and things have moved on. Best wishes, Viki x
Well Jean, that was a visit and a half. Personally, not being a chemist I would not offer an opinion but my view is that I am so grateful to my chemo Ruxalitinib for giving me the life I am enjoying. Yes, there are limitations to everything but this one works for me. Thoughtless and self-centred is how I view your friend and if that is being uncharitable then so be it. I have decided only to talk to my MPN friends about how I feel because truthfully not many on the outside really understand.
For the last time yesterday I said how desperately tired I was (in fact I was close to tears with the fatigue) and each of my really good friends then voiced how tired they were. All four of them almost in unison and that I should just accept that that comes with age. I love them dearly and we have been friends for almost ever but they don't understand because they can't see anything and so what on earth is this thing. I have shown them leaflets, and I have talked for England but they don't understand so my decision is I am not saying ever again how tired I am........I'm just going to go to sleep at the table and snore loudly!
Hi Superwoman, Have just been looking at Cancer UK and the article called "Mustard gas – from the Great War to frontline chemotherapy".
Sure your friend really is your friend and only wanting the best for you. When you described her comments, I thought 'that is exactly, almost word for word, what my daughter said to me!' She actually even asked the haematologist, whom I see, whether the background of these drugs is 'mustard gas' and she agreed, but says it has been adapted over the years....or words to that effect.
I think, as MPN sufferers, we do get hyper sensitive sometimes, especially when friends and family seem to understand, but actually don't!
Everyone needs to do what is best for them and to have confidence in the treatment they are undergoing.
Hope you will feel able to discuss things with your friend, in the future, without getting upset, and that she can really listen to you and really hear what you are saying. Very Best wishes, Tinkerbell
Also blood thinners are rat poison and Botox is botulism. Form and dosing do matter. No one wants to take toxic medicine but in our case killing cells is the best defense we have sometimes. Until she can point to research that shows dietary changes can heal the faulty stem cells that cause MPNs she doesn’t have much solid ground on which to build her opinions.
I would expect her to have respect for the health decisions you have made even if she disagrees with them.
It is terribly sad when friends simply "don't get it!" It is amazing how many "experts" there are out there regarding our very rare blood disorder... Wow, they clearly know far more than medical professionals!! I do hope you are able to find a way to repair the friendship.
Out of interest (and at some risk as I am not an expert or a chemist!!!) I did a Wiki search regarding Mustard gas and Hydroxycarbamide. If it is any comfort, it appears that both were developed completely independently, and from different chemicals.
To quote briefly regarding Hydroxy "Hydroxyurea has been prepared in many different ways since its initial synthesis in 1869. Medical chemists, Dresler and Stein created Hydroxyurea from hydroxylamine, hydrochloric acid and potassium cyanide as a technical exercise in organic chemistry, as part of a series of experiments generating derivatives of urea."
Sulfur mustard was first made by treating sulfur dichloride with ethylene.
It is true that a chemotherapy drug was developed from nitrogen mustard called "HN2" , this apparently was the first cancer chemotherapy drug, but it is quite clear to me that this drug was definitely not HU!
Do not know what planet she is on, if it was her, I just wonder what she would do. Just got a bit fed up with people saying one minute you look so well, and the next pulling you down, and telling you to go vegan which is fine, but to eliminate any other toxin in your body, in other words LIFE, still not happy that she felt she should dictate what I should be doing in my life. For now I feel really good and enjoying life to the full, which in the past I had so many things going wrong with me that I despaired of ever feeling well again.
For me now I keep fit, eat really well, drink the required amount of water daily, and just enjoy life to the full, I feel that I don’t need friends like that to pull me down, I still have a lot of living to do.
So my MPN friends thank you all for your kind words, you are friends indeed.
Same hear. I have had a woman barely was acquainted with email me with advice about my bipolar disorder and the med I was prescribed. I nod and smile, and forget it. My body. My choices.
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ET cancer or not?
Coincidence or not? 
