Hi dick
What a great blog my sentiments exactly!!!
For me whatever I do today and the next day is that I feel that i have some control in living with mm and physiologically that's a positive step
Dawn xxx
Hi Michele
Yes I'm all for blueberries 1st I knew about rhubarb so that's now on my shopping list!
I agree about going into war if your happy to go into war with treatment then my view then why wouldn't i want to use diet exercise stress buster activities thoughts etc as part of my armour.
With best wishes to you and your husband
Dawn x
Hi eve
Having spent the last few months researching I totally agree with you re packet foods etc!!!! It's such a crime that people less educated and on lower incomes aren't given the knowledge to help them understand this too and aren't in a financial position to go for fresh organic foods and the supermarkets still continue to sell cheap dodgy processed foods.
I wish you and your husband days filled with fun and manages to keep his weight stable.
Dawn x
Thanks Tom for your feed back I too read David Anticancer: A New Way Of Life – by David Servan-Schreiber book and in fact he gave me the motivation to take a look at my diet!!!!
and through my research on other diets found that in general terms they support his theory and again I've recognised that all the stuff I'm reading is not "rocket science" as it's about "healthy eating" avoiding processed foods, foods high in carbs, fast foods all the stuff the government is trying to encourage to avoid obesity.
I've also noticed a similarity to the recommended foods for a type 2 diabetic. Going for a med type diet, using lots if herbs garlic turmeric spice (curcumin)green t, fruit veg, flaxseed, and definitely few wacky things but in general it all makes logic to me
I'm now trying to find some decent cook books to help me especially as I need to encourage my kids see them as " family meals" and not something wacky.
I've been trying to find celebs, doctors, dietician specialists who have myeloma as I think they would be a good source for how they are living with myeloma. 1 they have the money to access 1-1 expertise and of course on tap access to the experts, coupled with a medical background. So if you've found this out I'd be keen to know.
I'm also reading " a cancer survivors companion by dr France's goo hart and Lucy Atkins practice ways to cope with your feelings after cancer" even after 7 years of living with myeloma it has managed to give me a lot of motivational coping strategies
and as with you all this yes it has helped me psychologically which is definitely good for me and of course longer term for my kids
I'm also reading " a cancer survivors companion by dr France's goo hart and Lucy Atkins practice ways to cope with your feelings after cancer" even after 7 years of living with myeloma it has managed to give me a lot of motivational coping strategies
Wishing you good health and many thanks for the you tube link
Dawn
Hi sharpy
Thank you for taking time iut to reply to my post. I have also heard about the budwig's diet I note however that Nhs mentions the diet which on one hand is promising but on the other hand doesn't really encourage it ?
Here's link to page
http://www.nhs.uk/news/2012/09September/Pages/Organic-food-wont-make-you-healthier.aspx
You might want to take a look at this guy you tube etc as i hear he is now causing a bit of a stir with his atest book. mind you I read his latest book and it did send me into a bit of a negative turmoil as my thought process to keep me positive is about new drugs coming onto the market!!!
Ben goldacre
Goldacre is known in particular for his "Bad Science" column in The Guardian, and is the author of two books, Bad Science (2008), a critique of irrationality and certain forms of alternative medicine, and Bad Pharma (2012), an examination of the pharmaceutical industry, its publishing and marketing practices, and its relationship with the medical profession.[3] Goldacre frequently delivers free talks about bad science—he describes himself as a "nerd evangelist."[2]
http://en.wikipedia.org/wiki/Ben_Goldacre
I will certainly spend som time reviewing beresden and his views – thank you
I totally agree from where you are coming from I want to eat more healthily and excersise more, my hubby is doing the same and am encouraging my kids who are n 15 and 20 to do the same !!! After isn't this what the government is trying to do regardless of whether or not you have myeloma..
Finally I would like to share a copy of my email with you the response to my question at the marsden about nutrition and hope it will help you.
"…Dear Dawn Watts
I received your message via the Royal Marsden website and was interested to read your comments.
We have a number of booklets on diet available in the hospital and it is up to each department to decide which ones they display but they are all available in the PALS office. The two main dietary booklets are Eating Well when you have cancer which focuses on problems with eating such as a poor appetite, taste changes, weight loss etc. and an After Treatment booklet which looks at diet and lifestyle changes after treatment carrying the well known ‘healthy eating’ messages. Here is a link to these booklets
http://www.royalmarsden.nhs.uk/cancer-information/patient-information/pages/booklets.aspx
Patients also have access to Information booklets from Macmillan, some of which are aimed at addressing dietary problems and questions and for people who are at the end of treatment we would recommend the World Cancer Research Fund information as they have an excellent booklet on Dietary Advice for Cancer Survivors.
As you will see from the booklets that the information we give has to accommodate all patient needs from those who have lost a significant amount of weight and are malnourished (which is over half our inpatients) to those seeking weight reduction / healthy eating advice. Information on the latter is not always suitable for people who are lost significant amounts of weight or have difficulty eating and therefore a whole range of information is required to meet these varied needs.
I hope this answers your questions on the information that we have available. We are currently working on a series of posters which will help patients identify which therapists and services are available in the hospital to encourage patients to ask to be referred to these services, including to the Department of Nutrition and Dietetics, if they wish for more advice.
Do please contact me if you require any further clarification.
With best wishes
Clare
Clare Shaw PhD RD
Consultant Dietitian
Department of Nutrition and Dietetics
The Royal Marsden NHS Foundation Trust
Tel 020 7808 2819
Fax 020 7808 2336
PA Anne Mclean
Tel 020 7808 2810
From: website@rmh.nhs.uk [mailto:website@rmh.nhs.uk]
Sent: 15 August 2013 17:05
To: Patient Information Centre
Subject: Online feedback submitted
A message has been sent via the feedback form on The Royal Marsden website.
From: Dawn Watts
Concern or complaint? no
Message:
This blog I have placed on the Myeloma UK Web site.
I would like to share this with you and I'd be interested to know if your hospital promotes / gives advice on "good" diet and nutrician and what sort of advice they are giving.
Quote from Myeloma UK "Diet and nutrition for cancer patients has, unfortunately, been a neglected topic".
My interest was triggered off by this Article and podcast
BBC Food – Cancer and diet: Why is nutrition overlooked?
Article By Sheila Dillon
Presenter, Radio 4's Food Programme
"..I was diagnosed with Multiple Myeloma (MM), a cancer of the bone marrow, in December 2011.
At every chemo session I was offered a white bread sandwich, a fizzy drink, and a chocolate bar or packet of biscuits.
Nurses told me that there was no point in worrying about what I ate. "Worrying" is not what I or any other patient wants to do…"
click here if you'd like to read more…
http://www.bbc.co.uk/food/0/22567354
and/or
Listen to Radio 4's Food Programme on Food, Cancer and Well-being on Sunday 19 May at 12:32 BST or catch up on iPlayer
http://www.bbc.co.uk/programmes/b01shstp
I dropped a note to the Myeloma UK helpline and this was their response.
"We were involved in the recent edition of the Radio 4 Food Programme on Diet & Nutrition and Cancer you mention as Eric Low, our Chief Executive was a contributor on the programme.
Diet and nutrition for cancer patients has, unfortunately, been a neglected topic. We and others are very aware that is an important issue for patients and hope to bring it more wider attention, particularly with healthcare professionals. We are currently developing Nurse educa tional programmes and one of the tutorials is on Diet and Nutrition. We also have an article on diet and nutrition in the latest issue of Myeloma Matters, our newsletter for patients…"
I too feel that diet and nutrition for cancer patients is a neglected area I'm being treated at the Marsden, Sutton under Professor Gareth Morgan. We typically get offered white / brown bread sandwich, concetrated fruit juice drinks, packet of biscuits, tea/coffee, low fat yogurts and fruit. there is little / no information visible on notice boards, leaflets on diet / nutrician (which is surprising given that it is a centre of excellence)
As a result, I have spent many hours surfing the net / reading books (and getting confused!) about what type of foods (ie eating more anti-imflammatory, low carbs, reducing processed foods, increasing Omega 3) ) that I should be changing/ including as part of my diet.
You may be interested in reading in this blog.
http://margaret.healthblogs.org/2013/05/20/cancer-and-diet-why-is-nutrition-overlooked/
Website: http://www.royalmarsden.nhs.uk…"
Wishing you good health and happiness
Dawn x
Hi eve
It's really interesting to get other people's views of living with myeloma. I've had this disease now for 7 years and I definitely don't feel like I'm clutching at straws.
in fact more so now i feel that i am living my life to the full And on a Day by day basis and will continue to do so until I'm told that is it!! Incidentally I was told that 2 years ago!
so part of my fight is to adapt my eating habits (which incidentally weren't very good!) to strengthen my immune system to help fight the disease and give the treatment that is thrown at me the best possible chance of working, it also makes me feel that i have some control in whats happening
whats the saying nothing ventured nothing gained.
Best wishes
Dawn
Thank you to everyone who. Provided me with advice and your wisdom..
I eventually went with all clear and got a good deal for a single trip.
However, I did find out that if you have one of these advantage accounts with your bank that gives free travel insurance – whilst they usually exclude myeloma with certain banks you can pay an additional fee to include myeloma for an annual cover and the cost was really good.
I know of 2 banks that will do this currently Santander and nat west and 1 that won't Barclays.. On this occasion I didn't use this option as my annual free ins is due to expire after my holiday
happy holidays to you all and thanks
Dawn
I whole heartily agree – so very true.
best wishes
Dawn xxx
try this… when someone says
What if this is going to happen?
and its a negative comment – respond by saying
but what if it doesn't?
Simply to do but effective for changing mindset (ps mindset won't change overnight!! again youll find councellors use this.
I use this with my kids when they are having a negative moment.
Dawn x
I totally understand…
the reality is that no-one really knows what's going to happen next in their lives regardless of whether they have MM or not –
for me its also finding ways to manage the treatment on a daily basis and going to the hospital so that it doesn't bring me down emtionally. It's not easy
I always thought I did know what was going to happen next, was a bit of a control freak – a real planner / organiser.
Dawn x
totally agree
Dawn x
Hi as a natural worrier it has taken me a very long time since MM diagnosis and to leanr the art of "mindfullness" – living and thinking in the present and stopping myself thinking what if?…
When I reflect back over the years – my treatment / life has not been how I thought it would pan out as a result of being diagnosed with MM – its been fat better…
The what if thought? still raises its naughty head with me, especially if I have a blip with my treatment, my FLC don't go down etc but I don't want this to ruin my day, so I find ways of distracting myself.
One thing I've noticed (and my family) that when I have a blip I engulf myself with MM research – reasearch that I have read the hour, day, week, month and even the year before which adds to my worries of what if… and really does stop me living for the day.
Learning the art of mindfulness does help me to emotionally live with MM and live and think in the present – I don't contact my consultant Professor Gareth Morgan (and PA!) at the Marsden Sutton as regularly as I did (I think they may disagree though lol)so something must be working…
Good luck to all of you with your emotional journey
Dawn x
http://www.budwigcenter.com/anti-cancer-diet.php
Cancer research UK has also written an article on the budwig's diet
http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/what-is-the-budwig-diet
Hope this help
Dawn xxx
http://agelessbyglynisbarber.com/ageless-articles/20-things-you-should-consi
der-in-your-anti-cancer-programme/?doing_wp_cron=1369468929.4264290332794189
453125
Hi eve you may want to take a look at the article above – I'm trying to adopt my diet etc to the principles given in the article
Ps re curcumin I've been told by the marsden not to take it because I'm on aspirin also there is no data on the effect curcumin has on pomalyst – I wish I could take it as I would feel like I'm in control of something especially as ver the years there has been more and more communications re curcumin as an anti cancer "tool"
Regards
Dawn x
Hi eve thanks for your positive message it relly does help to keep me focused and recognise how far I have one especially emotionally!!!
To be honest until recently I really didn't explore take much interest in my diet/exercise research around anti cancer foods etc
And just relied on the experts to do their stuff and pump me with all that lovely!! Anti mm treatments
However, now having become refractory to all current treatments
I'm now feeling a bit like a sitting duck and want to explore ways in which I can help myself ie my diet exercise etc i haven't tried the budwig's diet yet but have adapted my diet
based on anti-inflammatory foods, decreasing foods containing high omega 6 increasing omega 3, moved to goats milk, reduced dairy foods, no processed foods, no red meats. Increase green tea, dark chocolate!!!,
I recently read a book by David Servan-Schreiber where it supports a lot of the things I've heard read over the years in relation to our diet, stress and exercise to fight cancer!!!
I just wasn't in the right frame of mind then to seriously consider the information. Maybe your husband is in the same mind set as I was its hard enough trying to deal with the treatment and knowing their is no cure!
– maybe you could try introducing / removing foods etc gradually into your lifestyle
Good luck
Dawn x
