We are all looking for a magic pill from the doctor ,to take it all away ,kiss and make it better syndrome ! But in our case it can't happen

[Twinkly]

The doctor cannot make a miracle happen , but believe me ,we really can help ourselves ,take back your control ,if you do one positive thing today ,it's to give up your intake of chemical processed junk food and drinks ,, instant ready meals ,pop in the micro wave , do you really know what they are made of ,we are already taking strong medication ,chemicals we must have to keep us alive ,lets clean our body inside and help the doctor to do a good job ,,step back ,,take a look at the bigger picture ,,you are what you put in your mouth ,, so come on be a food snob ,,, Like me !!

[littled]

Good point Twinkly

My 8 year old daughter has recently been diagnosed with coeliac so since 1st jan have cooked every thing from fresh and have to be really careful with what I buy, goodbye to the quick fixes and the fast foods. I have noticed my upper stomach problem has eased considerably to the stage I no longer need painkillers. As the saying goes "you are what you eat" I now totally agree.

I have PV on clopidogrel, hydrox and omoprazole.

Would be interesting if any others have noticed a difference it makes sense to eat as healthy as possible but unfortunately it's easy to slip into the quick fixes for ease, but as you say we don't really know what's in them and something I never even realised until recently is the "cross contamination" that can occur in the process of foods.

[Boss1]

Hi Twinkly,

There isn't enough space to go into this now but my count is going down as I've increased exercise, cut out all processed food and red meat, increased all green leafy veg, cut down dairy. It's the industrialised food which is at the root of most disease and inactive lifestyle. I'm on some medical herbs and having acupuncture. Hardly any symptons (PV). I do take aspirin and have had a couple of venesections. I would have thought the medical profession would be interested but they are all looking the other way and looking for the magic drug....As always, there isn't a controlled experiment of me without this so nothing can be 'prooved'. I'm looking for medical professionals out there, or researcher's who take this seriously and it's not that easy! (Shockingly)

[Twinkly in reply to Boss1]

Hi boss ,thank you for your very positive reply ..I work with a team of 5 for my trial drug. The young Micky is Italian ,he believes my food restrictions are helping me get such excellent results ,together we agree the catering at hospitals is really bad ( Berger king ) the young trainee doctors go for lunch ,there ,,he was raised on healthy home made by his 84 year old mum she rides her bike to market each day for vegetables,,,in Italy ..

My mum was 94 Romany.never had a micro wave ,,, twink. X

[ainslie in reply to Boss1]

Hallo Boss1

I was interested to hear you are taking medical herbs and Acup, do you thing this helps,did it change your counts any, which herbs are you on.? I am considering trying this also and have seen a doc who does TCM, she has quite a lot of experience with leukemia so maybe worth a try.

[Boss1 in reply to ainslie]

There is no 'proof' but loads of documentary evidence pointing to the amazing properties of Olive Leaf which am taking as a tincture which I can't really go into here but any good herbalist can tell you (esp. how it works on blood vessels) I also am taking Ginko but being cautious...there is stuff all over the net about being careful with Aspirin but even then nothing that scares me into not taking it. I take Slippery Elm to line the stomach to help with known side effects of Aspirin. Slippery Elm is very, very safe and no side effects so I take this instead of Omeprazole. There are whole hosts of other medicines which have been used for thousands of years like Acupuncture which I know works but can't prove it's working for this.

I just believe that the body (like the planet) is very complex and given the chance will try and right itself, will do amazing things which many drugs work against. I'm glad the doctors are there an the NHS but my god, the whole system is looking in the wrong direction, for a wonder drug. They are mainly treating the symnptons of chronic disease and not enhancing the body's own power. Private doctors in the States don't seem so closed to alternatives.

[Boss1]

Hi Twinky,

That's exactly it. I believe there is plenty of evidence, especially linked to Mediterranean lifestyle and diet (which is really common sense) that has a really profound effect on disease (or lack of it). I'm not an exercise fanatic. I just ride my bike every day. I'm a real foodie and like a glass of red wine and eat good chocolate (over 70%) at's full of good things! (not everyday mind). I'm really enjoying improving my diet and cooking new things. It is a bit of effort but worth it. It's really how humans use to always live until after the Second World War when food became industrialised, and every one started using cars! I'm 52 and feeling in better health than I ever have, despite the disease. I find it absolutely shocking that the NHS hospitals sell absolute rubbish food within their hospitals (even just the tea places in waiting rooms in various departments)...hardly setting a good example! I do realise how hard it can be to change and have only done so since this diagnosis. It's not about denial, it's about caring for yourself.

[Twinkly]

Hi boss ,I think we should try to talk sensibly about this at the next forum or get together after all we put our drugs in our mouth every day ,but we put shelf life adatives in every few hours as well.my best friend was addicted to coca cola in cans ,she was diagnosed croans at 30 ,nearly died ,,supermarkets have a whole isle for this kind of drinks now,life makes us knowledgeable we should share that together ,,,twink x

[LouisePRV Volunteer]

Hurrah hurrah and thrice hurrah. At least SOMEONE's listening!

Violet and I have been BANGING on about this for blooming ever!

I have been on a completely chemical additive and preservative free diet for 18 months.

The fatigue, lack of motivation, and general malaise experienced with PV has reduced by 70 to 80%.

A diet like this however if you are really going to stick to it - and you need to for at LEAST 6 months to give it a decent chance - I won't rap it up - can be expensive, is inconvenient and unsociable.

I repeat!

Do

look at the Penny Brohn Cancer care centre website.

Email or phone them and ask them to send you info re the importance of an organic diet. Your eyes will be opened.

I have emailed Claire Harrision, Alisia and Maz re this and they are considering asking a rep from Penny Brohn to speak at the next forum.

Chemical additive and preservative free by the way includes no alcohol, only sea salt, only organic unrefined sugar ( billingtons) no caffeine ( inc decaff) you will ONLY be able to drink Rooibos naturally caffeine free tea and fruit/ herbal teas, organic juices, and water. Cut out all canned, processed and preserved produce.

Not easy.

But how much inconvenience is your health and well being worth?

I have just sent copies of the penny Brohn advice to all the purchasing directors of leading food stores, let's hope they listen.

Unfortunately our doctors don't understand that we are what we put into our bodies, and lifestyle can help enormously.

5 years ago I developed what I call my SHRED routine

S - support , from a nucleus of family and friends who are genuinely interested.

S/R enough sleep enough rest, and NO STRESS

E - exercise, at least an hour and a half of exercise a day. Walking is good you don't need to enrol in a gym.

H- hydration, drink at least 3 litres of water every 24 hours, well spaced out.

D - diet, as above.

If you are troubled by aquagenic pruritis there are steps you can take to avoid it, although your haematologist won't be much help except to give you more drugs.

I have recently helped to make a video for patient power, a superb website, which you will soon hopefully be able to see.

As Andrew Schorr so very rightly says, knowledge is power.

Yey!

Best wishes to you all.

Louise ( my real name, why hide?)

x

[Boss1 in reply to LouisePRV]

Hi Louise,

At last!!!!!!

I think the change in diet can be something that is about care and not about being too strict for me.

I have 2 (very good quality) coffees a week at the weekend because I really love it!

I drink Rooibos and green tea mainly.

I have a glass (or 2 sometimes) of good red wine with a meal a couple of times a week.

I eat good quality dark chocolate preferably 85%...it has lots of good things in it.

Mainly, I'm off highly refined carbs and sugars and into good home cooked food with vegetables.

Organic chicken and wild salmon where possible...expensive. No bread, oatcakes instead.

Definately off hydrogenated fats. I use coconut oil, goose fat or ground nut oil.

Lots of green veg and dark fruit (mainy more anti-oxidants than citrus) Loads of nuts especially ground almonds. I've trained my palette to not really like sweet foods now.

This is an anti cancer and general all round good diet for all of us..

I have some dairy but organic and no hard cheese (mainly goats).

I do gentle regular exercise everyday because I'm not sporty but I'm really loving it. I go out when the sun shines if I can to get the vitamin D!! If I knew how good I'd feel (esp. in the mind) by doing this, I would have done it years ago! It took this diagnosis to make me do it!

The main thing for me is for this to be sustainable and enjoyable. I may break it when I'm out with friends but I don't punish myself.

[LouisePRV Volunteer]

Ps if anyone is interested, you can email me your name and address and I will post you copies of the Penny Brohn Cancer Care organic diet info.

I won't divulge your personal details to anyone else. Quite honestly I'm not into subterfuge, but I do understand that many people prefer to keep their details under wraps.

This info isn't available on their website. Go for it, you've nothing to lose....

You can reach me at

[e-mail]

Louise