Jane McLelland: Has or is anyone here reading... - My Ovacome

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Jane McLelland

bamboo89 profile image
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Has or is anyone here reading Jane McLelland's book How to Starve Cancer... without starving yourself? Or checked out her Facebook group? Or even tried any of her methods... She seems to have done a massive amount of research, much of it investigating off label, old cancer drugs; I watched a video late last night of her doing a long interview with Chris Wark,what an impressive lady she is.. I have ordered the book out of sheer interest, but wondered what others think about it if they have read it?

Miriam

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bamboo89
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91 Replies
sticky3006 profile image
sticky3006

Hello. I’m reading it. Good book but very strict regarding diet etc. She generally follows what the COC in London advocates which is keeping your blood sugars stable and a wide range of vitamins. She’s a 19 yr survivor of stage 4 cervical cancer I think so either what she’s doing is working or she’s been very lucky! Who knows. Interesting read though x

bamboo89 profile image
bamboo89 in reply to sticky3006

Thanks - does the book mention non hormone driven ovarian cancer though? Although she mentioned OC in the interview, she only mentioned it in a cluster of other 'hormone driven' cancers, and not all OC is hormone driven, so just wondering... I'll find out eventually when the book arrives, but curious to know if you've found anything. I'm still curious as to where she got the intravenous vitamin C done....

She also has survived radiotherapy acquired leukemia, talk about determination to live, but then she isn't very old

in reply to bamboo89

She had non hormonal cervical cancer. The book is fantastic. She does not list every cancer and what to take do, but rather gives general info and drugs that are beneficial to all cancers and asks that you research your own type as to blocking other metabolic pathways.

intrigued I googled her and this interview came up.......it is very interesting and has given me food for thought. chrisbeatcancer.com/15-year...

bamboo89 profile image
bamboo89 in reply to

yea, there's a Youtube video of them talking together, that's what I watched, its over an hour long and very intriguing - all about her discoveries and her book, what a woman... it'll be on the Chrisbeatcancer youtube channel, but perhaps your interview link is just a transcript of that anyway, not sure.

user2001 profile image
user2001 in reply to

I am reading her book now and find it hard to follow but will keep going, Chris book is dubious, or at very least a marketing scam if you ask me and rationalewiki : rationalwiki.org/wiki/Chris...

bamboo89 profile image
bamboo89 in reply to user2001

As I said in response to your other comment, this post was not about Chris Wark; I have no axe to grind with or about him, whether he's genuine or not. Note also I don't trust Wiki.

Petrolhead profile image
Petrolhead

HiMany people want some sort of control and influence events when they join the cancer roller coaster. Diet is one way to do it.

Chris Wark has been discussed a few times on here. He is someone who says his recovery down to diet and the stuff he promotes on his website. He had normal surgery etc for his cancer then went on to advocate his regime. Anyone who is prepared to give him the time of day like this lady is not for me.

I am not against a good diet (must try it sometime 😁) and if you believe in something you wish to try but I don’t like people saying stuff works without rigid scientific evidence to support.

Always open to learn more but I always start from a very cynical base.

Best wishes

Fay

bamboo89 profile image
bamboo89 in reply to Petrolhead

Oh,that's such a shame you feel that way. Chris has actually started doing very short youtube videos titled 'Chrismyths' where he mentions something that's said about him and deals with it. Like Chris hates chemo for instance, which is not true, he feels it useful in some cancers and in some circumstances. And yes, he advocates a healthy diet, obviously, but brings on loads of different people who've beaten their own cancers to find out what they did, and its often not just diet. And I can't say I've noticed him pushing his own line of products... I bought beta glucan 1,3d because he uses it, but there was no mention of his actually selliing it, I just ordered off Amazon. The one I really wanted isn't available in the UK, so I had to settle for the next best thing...Plus its not actually true to say he says he cured his cancer with just diet - if you look at his story, he was lucky enough to work with a senior ex oncologist who had gone into integrative and alternative oncology, and he went to various clinics and places and had various treatments (oxygen therapy and iv Vitamin C being two of them), many of which are sadly not available in the UK.

Regardless, I'm not asking about Chris Wark, I'm asking about Jane McLelland and her research specifically - it is scientifically based, and she has persuaded some oncologists to rethink and review their procedures. She also advocates integrative oncology - she is not saying no classic treatment, merely finding successful ways of blocking cancer's various feeding pathways, especially in regard to stem cells, a largely neglected area in classic oncology. It's the scientific knowledge she has gathered that I'm intrigued by and the reason I've ordered her book... what I was asking was if anyone else had read the book and does it menton non hormone driven ovarian cancer. McLelland has worked out that different cancers use different feeding pathways, and her charts help to work out what's likely to work to block as many pathways as possible in your own cancer - preferably with guidance and prescriptions for some of the medications from a friendly oncologist, integrative oncologist, or a doctor,if you can find one.

Miriam

Shorty864 profile image
Shorty864 in reply to bamboo89

I am working my way through 4 books based around Jane Mclelland's book and I have taken on board a lot of things. However I am in the middle of my 3rd round of chemo (carboplatin and parlitaxel) which was successful the 1st time round (in 2013), but a lot of side-effects, but 2nd time round I had calyx and carboplatin (few side-effects and even kept my hair, but much less successful). Therefore went onto Niraparib which worked for 9mths. My cancer is stage 4 ovarian, non BRAC. I think we can't always wait for a trial to take place and therefore we should go for what we feel is right for us - afterall I felt when taking Niraparib that I was a guinea pig as they still don't know what the outcome of many of these drugs can or can't do. So why not go for a less damaging choice that does not kill your immune system. I have chosen chemo and will back it all way, but when I have finished, successfully or not, I will be following the softer route with all that I feel is possible and still live a good life. Knowledge is strength - don't remember who said it!!! Anne

bamboo89 profile image
bamboo89 in reply to Shorty864

Knowledge is power is the saying I know, and I don't know who said that either... but what I do know is, there have always been trail blazers - even Darwin was a trail blazer, and without them, nothing would change. There is a great deal of resistance in the medical profession generally, even with new science, and that takes time to overcome. In the meantime, we're all trying to work out what the hell we can do to help ourselves, wading through the morass of mis and disinformation out there, looking for nuggets that we think might help. I suspect most of us would try low dose rat poison if we thought it would work, especially those of us at stage 4 ... or in my case, Stage 4b, after all, rat poison's probably no worse than some chemotherapies. There ain't a stage 5, after all...

Fingers crossed for you, Anne

Miriam

Shorty864 profile image
Shorty864 in reply to bamboo89

My you made me laugh and that is worth a lot in our situation. Completely agree with you my dear, but I did omit to tell you I am 70. Yes my doc, who is very young, is not too into holistic medicine, but he is listening and we argue about things that we don't agree on and sometimes I give in or sometimes he gives in, but at least I feel I can have my say, even if thinking on it he might have been right - and afterall he has a degree and I don't but it is my life not his we are discussing!! Shorty xx

bamboo89 profile image
bamboo89 in reply to Shorty864

I see I neglected to mention I'm 68... and my oncologist has no idea what to do with me, thinks I'm 'difficult' and probably a bit bonkers. I pitch up to my appointments covered in small magnets to deal with arthritic pain, and when she saw those and asked about them, on hearing the explanation, the look on her face was hilarious... I roared with laughter I'm afraid. One of the distinct advantages of being over 65 is you're able to not give a *&#! what they think, yet still able to intelligently discuss (if they will play ball) various options with them... you go girl, keep up the good work. And yea, we're not always right

😄

Miriam

Shorty864 profile image
Shorty864 in reply to bamboo89

You have made my afternoon Miriam. I will going up the allotment when it gets a bit cooler to plant up my runner and broad beans - organic of course - getting ready for the softer approach! In order to do these sort of jobs I wait for the chemo and the few days of steroids to get everything done in. Wonderful what steroids can give you in the way of energy, especially when you know that probably the next 10 days you will be wearing out your settee yet again. Take care my dear. XX

BellmoreBelle profile image
BellmoreBelle in reply to Petrolhead

I'm with Petrolhead on this. Without a "control" or baseline comparison - e.g. someone who was identical, didn't do the same thing, and progressed/died - how do you know whether it's all the things you've chosen to do/not do, or the body managing in its own way to prevail? I'm a sceptic.

I was recuited for a clinical trial, but ended up opting out before starting; I also cut my course of chemo short. I'm absolutely fine without either of those two things. If I had finished chemo and stayed on the trial, I would have been included in the "success" statistics, my survival attributed to the drugs.

I eat exactly what I used to eat for years before diagnosis. It's healthy and I enjoy it. I continue to read and research and keep myself well-informed, and I'm deeply interested in the research occurring based on the various metabolic pathways, but it's early days yet - though our collective knowledge is increasing all the time, as well as the increased opportunities to collaborate and share data, thanks to the internet.

bamboo89 profile image
bamboo89 in reply to BellmoreBelle

That;s just it, you don't know - when someone comes up with a new theory, idea or treatment, until its been tried and proven many times, there's no way of knowing. But we still need those people who come up with those theories, ideas and treatments, alternative or otherwise, before any scientific solid evidence can be proven.

So let's talk about what I do know - I'm stage 4b, originally serous epithelial OC, differentiated into non small cell neuroendocrine cancer (rare as hell in the ovaries) at diagnosis. Of the 19 documented cases of women with my form of cancer, staged between 2 and 4, all were treated with chemotherapy, and all were dead within 14 months, with the longest survival for the Stage 2 women. A pretty stark picture which certainly concentrates the mind! I had my surgery in January, 2018 - 14 months ago. I had no chemotherapy ( couldn't see the point, wanted more time feeling well if I'd only got 14 months or less anyway) but I'm still here, much to the openly expressed astonishment of my oncologist. Yes, the cancer is now present in another lymph node, but so far, it hasn't spread and its not killing me... so far as I know. It will, eventually - I'm just looking for ways to slow it down and keep as well as possible, and that's all. Death is not important, its something we all have to do at some point - what is important is quality of life while I'm still here. So yea, if I can find some other, less conventional ways of helping myself, I'm well up for that..... that's where I'm coming from, though I realise many ladies on here are not in the same situation or headspace as me, and that's also fine. It's very much each to his own - but not a reason to not share...

Miriam

lynn6156 profile image
lynn6156

Hi,

I've read Janes book......it's very full on but impressive. It needs several read throughs and have pen/paper as you read part 2. She leaves you to map your own individual cancer and block specific pathways after you connect your type of cancer to her pathways. Ovarian is not specifically mentioned as the book is more about telling you why /how to block pathways. She does not advocate a specific diet other than low carb and is against extreme diets which can make things worse as the cancer cells adapt their metabolic pathways. She also is not saying the same things as Chris Wark (personally I have no time for him) but he has actually changed some of his ideas after listening to her. I'm in Jane's facebook groups - feel free to mail me .

Lynn

x

bamboo89 profile image
bamboo89 in reply to lynn6156

Thanks for that - I probably will mail you, but haven't got time today - been on here too long, got stuff to do!

Regards

Miriam

cd25 profile image
cd25

Thank you so much for mentioning this book! I ordered it straight away and can't wait for it to arrive!

Carianne

doodoolatrice profile image
doodoolatrice

I've read it and found it very interesting. Be sure to read it with a pen and paper or post it notes so you can mark pages. There's a lot to take in and some of the scientific stuff went straight over my head but I have made some changes to my diet. I can't follow her non carb diet though as I would find it virtually impossible but I have cut down on sweet stuff (I'm a chocolate fan) and I do eat wholemeal wherever possible. A word of warning though - I started taking Curcumin until I read somewhere it can interfere with Exemestane so be very careful if you're taking prescription drugs. Enjoy the book, I couldn't put it down and for me personally it did help somewhat, as it did encourage me to take back a little control of my body by cutting out some of the rubbish I was eating, Kerry

lynn6156 profile image
lynn6156 in reply to doodoolatrice

Agree with this completely - it isn't a book of 'eat this and you'll be cured'....it's a book with lots of scientific back up. I've seen others say it's difficult to understand and even harder to work out the phenotype of your cancer, but bless Jane for trying to get the information down so we have the choice whether to go along with it or not. I've been working on 'the map' for a long time.....would love anyone who has mapped it out to contact me for comparison.

I'd also like to add that the Kindle version is useful because you can use the search facility to go back and check things.

Lynn

x

thomas62 profile image
thomas62 in reply to doodoolatrice

HI doodoolatrice,

I am on Exemastane for low grade3b. and am also taking Exemastane, 3000 mg. nightly. Having just read your comment are you able to enlighten me on why it interferes with the Exemastane and if you can remember where you picked this info. up. I am also oestrogen positive/progesterone neg. hence the Exemastane. Best wishes. Gwen

doodoolatrice profile image
doodoolatrice in reply to thomas62

Hi Gwen, it's something to with how the liver processes the Exemestane and this is altered when taking turmeric. I read something somewhere (can't remember where) that made me ask the question on another site. A lady there confirmed that turmeric definitely interferes with exemestane. It doesn't jump out when you google the question though x

thomas62 profile image
thomas62 in reply to doodoolatrice

Hi again doodoolatrice,

Thanks for your reply -I think I'm going to stop theExemastane until I can get further information. If you do remember where you read this please let me know. Best wishes. Gwen x

doodoolatrice profile image
doodoolatrice in reply to thomas62

Gwen please don't stop taking the exemestane based on what I said . I just stopped taking the Curcumin/Turmeric. X

thomas62 profile image
thomas62 in reply to doodoolatrice

Hi doodoolatrice,

I so love your "nom de plume! I did stop taking the Curcumin a couple of months ago as well after reading something negative in relation to oestrogen positive cells which I have. As there was no evidence/research to support this I continued to take it a couple of weeks on. So, yes, I prob. will continue to take it but will try and get more info about it. I will be asking for another skype personal prescription from C.W.at Cancer Active shortly so will ask the question. He is very knowledgeable. If I manage to get any info. will report on this site. Best wishes. Gwen x

Trathi profile image
Trathi

No not read this, may look into it. Thank you xxx

Cropcrop profile image
Cropcrop

Hi, I believe, and always have believed, that good diet is vital for us all regardless of our illness. I was intrigued by the start of your post because of my thoughts on food then Chris Wark was brought into the conversation. I will watch this video but, if Jane McLelland has similar ideals as Chris Wark I have serious distrust of the methodology they espouse. Both are cancer survivors, i know nothing about this lady yet but I do know Mr Wark had surgery to sort his bowel cancer, he poo poo’s standard procedure to help cancer patients and promotes his diet ideas as the be all and end all way to survive and is making money from his preaching. As I say I will look into this lady in the same way i researched Mr Wark who, incidentally I believe to be a very dangerous man to vulnerable cancer patients, and I will come back to this conversation. I truly hope she has ideas that are valuable to us all.

Happy reading ❤️Xx Jane

in reply to Cropcrop

Totally agree with you Jane.

One other thing I would say after having this bloody awful disease for three years (can’t believe I’m saying that) is that at some points I have been able to eat normally and at others (bowel obstruction and chylous ascites) not. I try to have a healthy diet but occasionally it has been about the number of calories not how I get them, or low density or >10g of fat.

Had I been on a very restrictive diet I would not be able to order food in when I just feel to weak to make it or accept food from my family.

I suppose what I’m trying to say is I would have found it practically impossible to put all of my eggs in one diet based basket over the past three years. X

Cropcrop profile image
Cropcrop in reply to

Absolutely, this is why these people really annoy me with their platitudes, they’ve been truly lucky to survive their cancers and not recurred but we really don’t know if it’s because of or in spite of their diets and you go to prove that one size does not fit all. I hope you are able to find foods to suit you depending on your situation. I know exactly what you mean about not being able to believe saying you’ve had cancer, I feel like that most days. Take care lovely ❤️Xx Jane

in reply to Cropcrop

You too, I think one of my biggest take outs of this year (after quitting Avastin) has been to do what’s right for me, my focus is quality of life not quantity.

I’m a super positive person but hugely sceptical when told a cure/management of this disease can be found through food or prayer alone! I will read the book as I’m not closed by any means but will read with the above in mind. X

Cropcrop profile image
Cropcrop in reply to

You sound very much like me, I’m super positive yet sceptical and I approach most thing open minded. ❤️Xx Jane

bamboo89 profile image
bamboo89 in reply to Cropcrop

Maybe I shouldn't have mentioned Chris Wark, but it was sort of unavoidable since the video I watched involved him listening to Jane McLelland...

On the subject of Chris, I don't even know what diet he actually follows precisely, other than he did some fairly strict regimes in the early days after his surgery, and that now he seems to be mostly whole food plant based,organic where possible. Given he lives in America, I am aware its probably much more important to make an effort with diet, since a lot of their food wouldn't even be allowed here, which might be why everyone thinks he's obsessed with diet.

i did change my diet, taking up a slightly flexitarian, whole food plant based approach, but based on Dr. Greger's work, not Chris Wark's and I did that primarily to try to change my gut microbiome, which I suspected was in pretty poor condition. The thing I like very much about Chris Wark are his video interviews with hundreds of other people with different approaches to cancer... one of the interviews he did was with Kelly A.Turner, the writer of 'Radical Remission', also an ex oncology nurse who switched to integrative cancer treatment rather than the classic oncology approach, so I'm not exactly following Chris Wark, but give the bloke his due - he's very open to what other people say and the methods they use, whether he uses those methods himself or not.

I'm certainly not put off reading Radical Remission because Chris Wark interviewed the lady who wrote it, any more than I'm put off reading Jane McLelland because she too did a video with Chris... I'm just grateful he does the interview videos at all, otherwise I might never have heard about either of these books..

Miriam

in reply to bamboo89

Hi Miriam,

Your post has spurred me in to make two veg soups today! X

bamboo89 profile image
bamboo89 in reply to

😄😊

lynn6156 profile image
lynn6156 in reply to bamboo89

Exactly Miriam!!

I think the video with Chris was prompted because Jane was finding it difficult promoting her book. She noted in facebook that Chris had found much success promoting himself - he has quite a following, so being interviewed by him she knew it would be watched.

Lynn

x

user2001 profile image
user2001 in reply to bamboo89

Chris is a voracious promoter and 10 days after publishing his book it had 200 or more 5 star reviews.. hmmm most are fake. rationalwiki.org/wiki/Chris....

Jane should stay a mile away from his likes..

bamboo89 profile image
bamboo89 in reply to user2001

You're entitled to your opinion, but frankly, I don't consider Wiki to be a reliable source of purely factual information... and my post is about Jane McLelland, not Chris Wark...

bluepeterella profile image
bluepeterella

Yes, I've read the book and follow the advice. Much of the science is too much for my brain, despite having a health-professional training and background. What I can get my head around makes perfect sense though. The basis is that chemotherapy kills off the fast-growing cells but leaves the stem cells untouched. The stem cells are then able to mutate and re-grow so that the cancer comes back harder to treat, stronger and more aggressively. Her advice is to starve the stem cells at the same time (not to abandon conventional medicine but to use both approaches together) by means of re-purposed drugs which have been well-researched to block the pathways the stem cells use to feed and grow - in a nutshell, glucose, fats and proteins. Blocking just one pathway is not enough because the stem cells are able to switch pathways.

She does advise a low GI diet and many supplements, but I don't find the dietary advice particularly strict.

There are two good facebook groups to have a look at for more information - Jane Mclelland Off Label Drugs for Cancer, and How to Starve Cancer - Book Study Support Group.

in reply to bluepeterella

Thanks, will take a look. I’m always interested in new approaches but know anything that is too restrictive diet wise is not for me. X

bamboo89 profile image
bamboo89 in reply to bluepeterella

Thanks for that, very helpful. I did know about the problem with cancer stems cells and chemo shortly after I had my surgery, which influenced some decisions I made re treatment. But Jane McLelland's approach (as you describe) might mean I change the decision I made about treatment last year... very helpful summation of what she says, looking forward to receiving the book

Miriam

Superkim profile image
Superkim

Hey there, Miriam!

I haven't read the book, but I will check it out. I do believe that eating well can make a huge difference. Not necessary cure you (as I've been dealing with this since 2007) but most definitely help with recovery, longer remission and and side effects.

Thanks for the information, I find a lot of value in other people's experiences.

All the best,

Superkim

bamboo89 profile image
bamboo89 in reply to Superkim

Hi Superkim - re diet, for sure, absolutely - I did tons of research, looking at every nutter video regarding cancer, and found a few pearls in amongst the dross, took bits of anything I thought might be useful, and changed my diet to whole food plant based, having found Dr. Greger on line, though I do take a slightly flexitarian approach, not totally cutting out all animal protein. I can't help feeling the gut microbiome is critical to health and disease, even cancer... I too find a lot of value and interest in other people's choices and experience

Miriam

Superkim profile image
Superkim in reply to bamboo89

Very cool! I'm plant based too and it has made all the difference. My blood glucose is lower, my weight is down and in normal, my blood counts stay in check...and overall I feel really good. I'm able to work full time through chemo and I'm even finishing up a 6 month professional plant based cooking certification. And Dr. Greger is a hero of mine. I only wish I started sooner.

Good for you!

bamboo89 profile image
bamboo89 in reply to Superkim

You too, very cool! I have to say cutting out dairy completely and reducing meat to no more than once every 4-6 weeks and the inclusion of beans/legumes did wonders for my cholesterol - it halved in 6 weeks, much to the GP's astonishment, who had not realised I'd changed my diet. Bonus too - no more migrainous visual disturbances (dairy was the cause it turns out) and hardly ever any heartburn, except when I eat coconut... surprising what this cancer journey has revealed!

Take care

Miriam

bamboo89 profile image
bamboo89 in reply to Superkim

I meant to ask - where you doing the Plant Based Cookery Certification please, I've not heard of that?

Miriam

Superkim profile image
Superkim in reply to bamboo89

rouxbe.com/ The name of the program is Rouxbe. If you look up Rouxbe recipes on youtube, there are a bunch. There is the full certification and there is also a 3 month "Forks over Knives" course as well.

bamboo89 profile image
bamboo89 in reply to Superkim

Great, thanks for that info...

Miriam

Just read your post and ordered book after watching video on you tube.

Looking forward to it arriving.

Janet

dieneke profile image
dieneke

Hello Thank you for that. I saw the video and it makes a lot of sense. I actually already use curcumin which is

Mentioned which keeps my multiple myeloma stable since 2011. But it seems that for ovarian cancer - I am stage 4a and diagnosed last April more is needed. So I also ordered the book. Some of the off label drugs I had already heard of such as metformin. Interesting she mentions statins though.. I don’t like them and have still resisted taking them.

bamboo89 profile image
bamboo89 in reply to dieneke

Yea, I was intrigued by the statin thing - also the mention of 'hydrophilic' (is that a word?!) types of statin and non hydrophilic, with the latter being more useful for cancer... I can't wait to read the detail on that, I too have avoided statins like the plague... As for curcumin and cancer, yea its useful, but better if combined with ginger and black pepper, taken with oil - but no one thing is going to do the trick, I don't think, it seems sensible to assume its a combination of factors that keep cancer at bay or slow it down. Its just knowing which...

Miriam

dieneke profile image
dieneke in reply to bamboo89

Hello Miriam

Yes that would be interesting to see - very curious those statins....

Re the curcumin, yes it has to include black pepper as it is not very absorbable. I presume ginger is always good. I am taking that now too.The curcumin I have been successfully taking is Dr Best Curcumin C3 with bioperin. Pills of 1 g, 8 a day on an empty stomach so I was taking it at night but not too close to bed time. You slowly build it up. That amount helped for multiple myeloma, which is a blood cancer, but I think it is not sufficient for cancer of the ovaries... So I am also experimenting with that. It is still early days. My multiple myeloma experience though has taught me not to be afraid of stage 4, which is what I am for multiple myeloma. As Jane also says in her interview, it is about managing the disease ...

Best Dieneke

bamboo89 profile image
bamboo89 in reply to dieneke

Managing the disease, yup, that's all I'm aiming for - at Stage 4b, all I'm doing is trying to stave off the inevitable for a bit longer. And that's okay, at my age!

Take care

Miriam

dieneke profile image
dieneke in reply to bamboo89

But that could be very long.. and become a bit like a chronic illness.. that is how I see it.

Cropcrop profile image
Cropcrop

Well, I have looked into this lady and read a few articles on her.

The claims made are that she treated her metastatic lung cancer with a cocktail of drugs that are normally used for other diseases. They include aspirin, statins, metaformin and dipyridamole, all drugs used for other diseases and each with its own unique side effects which, in fairness, are alluded to. She is patient zero in this study which makes perfect sense as she is the first to try this method, I am unable to find details of patient number 1 or any others but they may be out there and there may be links to their existence in her publication. Her friend Mr. Wark was also patient zero in his study 🤔. I say her friend Mr Wark because that is how they describe each other. She also took a mix of ‘strong’ supplements alongside the trial drugs and is a very lucky lady is seems to still be with us today. Her choice of drugs is quoted to have ‘melted away’ her diagnosed terminal cancer. Her initially diagnosed cervical cancer was also described as terminal yet here we are.

If her remarkable recovery and it’s route is to be believed then there is potential hope for all mankind, however I remain sceptical. My thought is that if her methodology is proven, the point is pressed that her book is endorsed by a ‘London clinic’, and she has been on this journey since her early thirties and is now in her fifties, and given that intense research is continuing worldwide to find a cure for all cancers and she claims to have discovered the route to stop all cancer cells thriving, then why are we still having people die from this insidious disease? Why haven’t the medical professionals embraced and taken on board her research and provided the information and subsequent treatment to us all? One size certainly does not fit all, all of us here have or have had ovarian cancer or know a lady who has been diagnosed, I would guess we have all had similar treatments yet some of us responded to the treatment and others didn’t which kind of proves the point.

I was treated at the Christie in Manchester which is a world renowned and respected cancer centre, they undertake world leading research yet I wasn’t offered this regime in 2014, I am there again in August and will certainly speak with them and ask if there is any validity in the claims made in this lady’s book. I will try to find out the ‘strong’ supplements she took alongside the prescribed drugs to show the full regimen and give a full balanced list.

I truly hope her methodology works for others as so many lives could be saved but I do wonder why it has taken so long for this information to come to the fore?

The claims made by these people and the part they play in really vulnerable people’s lives at such a difficult time is the part that really worries me. We are cancer patients, we do not need non-professional people telling us how to heal ourselves, it’s always always good to promote healthy eating where possible, I am a great believer in eating good food wherever possible, it is not always possible for some people all the time especially depending on their personal condition and financial position, it is also important to remember that many holistic and alternative methods have their place for many people both alongside ‘traditional’ medicine and as an alternative route and if people believe these are the right way for them then that’s good and even better if they benefit but, again, one size etc...

We will always be divided on subjects like this but we need full ratified information to go forward fully armed in our battle against this bloody awful disease. Enjoy the Easter sunshine ladies ❤️Xx Jane

bamboo89 profile image
bamboo89 in reply to Cropcrop

Well, in the end we all choose our own routes through this disease. I have never trusted the medical profession fully, having been life threateningly misdiagnosed on two previous occasions in my life, and certainly I don't trust big pharma products immediately either. I am open to any approach that seems to me sensible - the reason I took up Dr. Greger's advice re diet is because he backs up his recommendations with scientific evidence and papers that he provides links to - I'm all in favour of science. I'm a horticulturalist, and the twaddle that's promulgated about gardening and growing stuff is unbelievable - I always look for at least two good horticultural sources to back up any new information I get, in other words, scientific back up, not myth and legend.

But sometimes in life, the science lags behind, especially in medicine; it always has done. Take cholesterol for instance - the NHS 15 years ago used to put people on low fat diets to reduce their cholesterol. Total waste of time of course, cos it had the opposite effect, people's cholesterol rose. Took 'em another ten years to accept its the type of fats you consume that's important, not just fat itself. There were non medical voices in the wilderness saying this at the time, but it still took ten years for recommendations to be changed.

Sometimes, you just have to wing it and take a more unconventional route - if that's your nature, and it is most definitely mine.

Also be aware the Jane McLelland did have chemotherapy - just at lower doses, after she had taken whatever supplements and off label drugs she worked out might do the job to keep the cancer at bay. And the low dose chemo, to her complete shock, apparently killed of the much weakened cancer... but I haven't read the book yet, so will be intrigued to see precisely what she did.

in reply to bamboo89

Jane mcLelland did conventional treatment AND the well researched add ins. She did not really do low dose chemo, but in her last round did get her oncologist to lower the dose. That’s not exactly/specifically low dose chemo but I think in many cases Jane M would advocate today for low dose. What wonderful and real and complicated about Jane’s thinking is that she does not promote a cookie cutter approach, but rather getting folks and docs engaged in how their specific disease acts and feeds and addressing it on all/as many fronts as possible. I agree that many of us stage 4 folks simply do not have the time for science to catch up and are willing to use our best smart research to try to heal.

dieneke profile image
dieneke in reply to Cropcrop

Hello Jane

Good points. I think the idea of a coctail of drugs, combined with supplements and then tailored to each one individually is a good one. I am still new to the cancer of the ovaries journey but comparing with my other unrelated cancer multiple myeloma (blood cancer) , diagnosed in 2008) the cancer of the ovaries has a very rigid treatment. I found that after my first chemo I basically was given up and was told that surgery only works after the first chemo - I haven't had any surgery as yet. Well I find that really hard to believe. Despite the amazing new technology that is available the head surgeon doesn't want to use it. The hospital has a plasma jet that can kill the small cancer cells but the oncology department doesn't want to use it. Unbelievable... Also surgeries are supposed to stop cancer from coming back, but I have heard from so many now that it doesn't seem to make any difference and the cancer still comes back!!!

Best

Dieneke

thomas62 profile image
thomas62 in reply to dieneke

Hi Dieneke,

I have just picked up your name on this OC site. I became aware of you some years ago when I read you used high dose curcumin regarding your multiple myeloma. I then researched the diff. types of circumin and started taking the same as yourself i.e. Dr.'s Best C3 - but taking only 3 - 1000mg. nightly although recently I have reduced it to 2000mg. Do you have OC Dieneke - if so, what type and when were your diagnosed? I have also picked up in the messages here that if one is taking Exemastane then perhaps Curcumin is a good idea - I am on Exemastane should I stop taking the Curcumin? Best wishes. Gwen low grade OC 3b. 2014.

dieneke profile image
dieneke in reply to thomas62

Hi Gwen

Yes that is me alright. The OC seems to be unrelated to the multiple myeloma, as far as I can see. Diagnosed last March, but it probably was there for a while. Admitted for breathing problems, in hospital 3 weeks, caused by ascites mostly. Then started chemo and diagnosed stage 4 a. I am continuing to take the same amount of curcumin as otherwise the multiple myeloma will go up again . I have read that curcumin doesn't interfere with OC treatment and even helps reduce the tumor and lessens the side effects. But again really no research done on this. As I am not a specialist I can't really advise you.. and of course my own experience is with multiple myeloma, no ovarian cancer. I have written that up if you are interested...

hiddenart.co.uk/2017/11/28/...

I am interested in the Jane McLelland story as maybe that gives us pointers to get the OC under control.

Best

Dieneke

thomas62 profile image
thomas62 in reply to dieneke

Hi Dieneke,

Thanks so much for your reply. What a story you have to tell and I'm so sorry that you now have another battle to win with OC. I hope that turmeric can also play a part in this! I am also interested in the Jane McLelland story and will follow this up.Wishing you all the very best and please keep posting on this site.

Gwen xx

dieneke profile image
dieneke in reply to thomas62

Hello Gwen

Thanks for that. Yes we should definitely keep each other posted and see whether anything comes out of it.

Dieneke xx

lynn6156 profile image
lynn6156 in reply to dieneke

Hi Dieneke - I've read your work on curcumin and just wanted to say thank you - very impressive and I'm sorry to hear you're now on the ovarian journey.

Lynn

x

dieneke profile image
dieneke in reply to lynn6156

Hello Jane,

Thanks for that. Yes it was quite a shock initially but then you just have to get on with it and make the most of it. And my story so far with OC has been rather eventful and has landed me in the magic realism world of the NHS. As my case is so different, they just don't know how to deal with me... when I went for chemo a couple of weeks ago, I was told I couldn't be helped as there was no 'CHAIR' available!!!!! I wrote it up on my personal instagram and a friend of mine suggested to bring a foldup chair....

Dieneke

Cropcrop profile image
Cropcrop in reply to dieneke

Welcome to our lovely family of ovarian ladies and their support. I am really surprised your oncology department has given you such information, I think if I was you I’d ask for a second opinion. I had my surgery before I had any chemo so I’d be inclined to question that information, Other ladies here have three doses of chemo before their surgery followed by 3 more doses afterwards. I suppose each hospital has its own ideas. The surgery removes as much of the cancer as possible then the chemo is intended to tackle any straggling cells. The cancer doesn’t always return, I’m 5 years post op in July and still NED, I know I’m one of the really lucky ones and am so appreciative.

Maybe it would be a good idea for you to see another consultant if at all possible to see if an alternative plan could be formulated for you?

I hope you get an answer for this very soon so you can go forward with your treatment. Take care ❤️Xx Jane

dieneke profile image
dieneke in reply to Cropcrop

Hello Jane,

Thanks for that. Good to hear that is not the norm. And yes this is a great group. So needed for those with OC.

Actually I asked for a second opinion as I was told that the surgery might have to take out more organs than needed. As the tumor was close to the rectum the head surgeon thought that most likely I would end up with a permanent stoma - which I didn't want if not needed. particularly as I had read about the surgeon's approach in general of taking out as much as possible. So after my last chemo which was in September I asked for a second opinion and found the hospital I thought could help. Although the hospital I was at knew about my second opinion request I did it through my GP - and the second opinion was refused, the reason being that the plasma jet I was interested in was already at the hospital I was at. That dragged on and by November I asked my own hospital for a CT Scan as I was feeling pain. They had left me as they thought I had gone to the other hospital. In the end I got a CT scan in February 2019 after which the second chemo started as a cyst of 10 cm had developed in the primary tumor and also the secondary tumor had grown a bit.

Since then I heard that both hospitals are closely linked which might also have influenced the refusal. Plus the fact that they have private patients as well as NHS. And my case they probably don't want .. two cancers and 68 !

Depending on the results of my next CT scan I will continue to research where to go to for surgery and discuss this with the gynaecological team

Best

Dieneke

Cropcrop profile image
Cropcrop in reply to dieneke

I hope you are able to get this sorted speedily, your age should have no bearing on the situation. Good luck with this, keep in touch with us ❤️Xx Jane

dieneke profile image
dieneke

Thanks Jane, will keep you all posted.

Best

Dieneke

Petrolhead profile image
Petrolhead

There has been some interesting replies. Croptop (Jane) has done some excellent research - thank you.

It does make you wonder if it is all about the money.

One reply said- I quote Lynn6156

I think the video with Chris was prompted because Jane was finding it difficult promoting her book. She noted in facebook that Chris had found much success promoting himself - he has quite a following, so being interviewed by him she knew it would be watched.- end quote

She wants to promote a book. That equals money. She noted Chris Wark promoted himself well- that equals money. He is raking it in and she would like to do the same.

If she really wanted to spread the word for the benefit of those who needed it she would make it available at negligible or zero cost at least as an e-book. I do not think this will happen.

Yes I am cynical but money does tend to rule most things. Best wishes to all who find help and solace from the book.

Best wishes

Fay

bamboo89 profile image
bamboo89 in reply to Petrolhead

Well in an ideal world, you're right, but that level of altruism likely doesn't exist or is at least as rare as hen's teeth in humans. I'm always dishing out free advice on people's plants and gardens, especially on line, but even I had to learn to draw the line somewhere - either that or starve to death. And my tendency to dish out free professional advice as well as actually do free work meant I really only just about earned a living rather than being well off. And if someone makes money from all the research they've done and the journey they've made, well, that's ok, especially if it helps others. As for Chris Wark, his initial experience of cancer was, what, 30 years ago? That's a long time to be posting Youtube videos (which is how he started) and these days, you could post a youtube video on how to apply lipstick or replace your knicker elastic and you'd gather a following over time. Ultimately, yea, I'm by nature a sceptic, possibly even a cynic, including of the medical profession generally, but that doesn't stop me from investigating stuff I'm interested in to see if it might be of some value. And just because someone is earning a living from passing on what they've learnt isn't enough to make me think I'll not bother with that then - its the quality and quantity of the research and information that counts for me. I might decide its no use at all to me.. or I might not, but without investigation, how will I know? The fact is, where cancer's concerned, there is no magic bullet... it would appear a combination of approaches might make a difference in some people, but there is no one answer. I remain a dedicated sceptic/cynic, but always try to keep the door open, which isn't always easy, it has to be said😊

bibs73 profile image
bibs73

The thing I’m cynical about is that there’s never going to be “scientific” research into how repurposed drugs, diets, supplements help in cancer. There just no money to be made so the drug companies will not invest the thousands/ millions needed to fulfill the scientific criteria. Sadly the cancer charities don’t also appear that keen. The COC approached cancer research years ago and said there’s lots of evidence to suggest these repurposed drugs can have a positive impact on cancer but sadly cancer research turned them down. Interestingly CR started a research into metformin a few years later, however COC believe the combination has a greater success.

My daughter had a brain tumour and I have low grade serous ovarian ca both very rare cancers and I continuously find that very little funding goes into these cancers, if any. To put it frankly there’s not enough of us to make the money back on any research done.

Also millions are being spent on treating cancer but nothing appears to be happening on the causes of cancer. I do not accept the bad luck scenario. Back in the 1950s you have a 1 in 75 chance of getting breast cancer now you have a 1 in 8 (or something ridiculous like that). I honestly don’t think people are having more “bad luck”. Recent research from Canada suggested that the majority of cancers can be due to lifestyle so for me improving diet and exercise can only be a good thing, it’s certainly not going to do any harm. My own oncologist was saying that with endometrial cancer he does not have one patient that does not have an unhealthy BMI so in his opinion that cancer is directly linked to lifestyle.

As time passes I’m sure we will get more answers but in the meantime I will continue to research to see if I can find ways to help myself. I accept there’s some wacky stuff out there that I keep away from.

bamboo89 profile image
bamboo89 in reply to bibs73

You speak from my heart and brain there, Bibs... I heartily agree with you, and my scepticism is very much broad based and includes medicine and pharma. The big pharmas and Cancer Research are all really looking for a single silver bullet answer, a treatment that will be a cure, and I don't think there will ever be one. 1 in 2 people will now get cancer of some sort - five years ago, it was 1 in 3, and 50 years ago, it was something like 1 in 6. Sadly, I strongly suspect its not just diet that's causing the problem, though it plays a highly significant role in the West particularly, but can also be attributed to the levels of pollution of various kinds in the sea, the air we breathe and in the soil - and what's in the environment ends up in our food, so we're not just breathing it in and drinking and washing in it, we're also eating it. Nano particles of plastic are at 87% saturation in the air in the UK; in the USA, its 99%, and I can't remember the saturation in the oceans (and therefore in sea life). And that's without the usual ozone, No2, particulates and more common air pollutants. Add in nutrient poor food grown with chemical fertilisers in poor, depleted soil, sprayed with chemicals (often systemic ones in non organic foods, so it can't be washed off, its in the fibres of the food), the glyphosate residue on every non organically grown grain crop, and in some countries, antibiotic and growth hormone levels in meats and poultry, and the chemical load is really very high indeed in the human body. Much of this we can't do anything about, but changing one's diet to preferably organic, especially organic breads and flours and grains, reducing meat and dairy are things we can do to at least reduce this chemical load. Though to be fair, this would be better done before getting cancer to try to prevent it in the first place, but usually, economics prevents doing this for many families.

What pharma wants is to get a silver bullet, money making drug out there, then we can all just carry on with our lives without changing anything...and they can then still carry on recommending whatever their latest pesticide is as well, pretending, as they did with glyphosate, that its harmless to the environment and humans... sorry, I seem to have climbed on my soap box again! I'll get my coat...

Miriam

bibs73 profile image
bibs73 in reply to bamboo89

I completely agree with you.

bamboo89 profile image
bamboo89 in reply to bibs73

Oh good, not too much then! Being a horticulturalist, my pet rant is about how our foodstuffs are grown... Whatever, the problem is systemic; it involves profit, big money, big business... there is something very rotten in the state of Denmark, to borrow a phrase...

Take care

Miriam

Artgreen profile image
Artgreen in reply to bamboo89

I agree. As a low grader with an oestrogen receptive serous carcinoma I’m very conscious that oestrogen is in plastic and that is now everywhere. I’m reading Jane’s book but she isn’t looking at oc or oestrogen receptivity so far and I get confused with the different supplements. My oncologist sticks to the NHS protocol and I don’t think he has much time for the alternative approaches. I will ask him when I get scan results on Friday about his view on starving stem cells. And high dose vitamin c, and aspirin. I’ve always been heavy but fit and strong and eaten a varied healthy diet and avoided a lot of meat. On the Facebook low grade serous page further research is being mobilised on diet and hat should be interesting.

Good luck

Alex

bamboo89 profile image
bamboo89 in reply to Artgreen

Jane did briefly mention OC in her interview, but only clumped in with other 'hormone driven' cancers'.... which is why I asked the original question at the top of this thread, because mine's not hormone driven. I was rather hoping OC would be covered, though I'd not be surprised if it isn't, it rarely is in any of the books out there, but either way, I'll read it when it arrives, though its beginning to sound like its very dense reading indeed... it certainly seems likely I'll need to join one of the various Facebook groups centred around this book for further interpretation, if I think the book is of any value to me, that is, and if I've got the energy... its not even arriving before the end of this week!

I hope something useful comes of the Facebook page you mention that might be of help to you

Miriam

lynn6156 profile image
lynn6156 in reply to bamboo89

I've mapped out ovarian but I think your neuroendocrine is wandering off on a different horse - did they give you any more clues or suggest any treatment? I know you may not want treatment but the suggestions are useful for seeing how things work. I think the neuroendo aspect of this indicates a couple of signalling pathways. I'm on this for you because as you suspect - it's dense reading.

L

x

bamboo89 profile image
bamboo89 in reply to lynn6156

Well, I can't say the picture is very clear from oncology, apart from saying i had been 'very unlucky' - they say they would use the chemo they always use for epithelial serous ovarian, cos they're assuming that's what it started out as, though they didn't actually find any evidence of it in the pathology, something I pointed out to them. When I did some research on the non small cell neuroendocrine that they say it differentiated into, they use two other chemos for that - I worked out they'd do the classic combo of paclitaxel and carbo first, and then probably later, the other two chemos (which I've now forgotten, but might have been gem/caelyx) for the neuroendocrine. I visualised an ongoing, continuing stream of close together horrible treatments with their inevitable long and short term side effects, none of which were going to cure me anyway, even if I survived all the treatment, given my other co morbidities, so I couldn't see the point, I value the quality of whatever life I've got left too much. Also I'm unconvinced by the epithelial serious argument - why couldn't they find that, if that's what it started as, surely there should have been a cell or two showing that as well... That's the trouble with being a member of a very, very small club... the neuroendocrine one is so rare as a primary in the pelvis, they don't have much experience of dealing with it. Either way, they're just generally calling it 'ovarian cancer', and its not, apparently, hormone driven.

The only other thing I know is my serum folate is high, even though I don't take any folate supplementation, and that, I discovered from elsewhere, is a signal that two protective oncogenes have been disabled, one for bowel cancer and the other one is unclear. Which would likely fit with your 'couple of signalling pathways'... Not that the oncology department I attend is in the least interested in that, they won't even discuss it.

I'm deeply grateful you're doing some work for me on this though; in the end what will be will be, but that doesn't mean I'm not going to try to help myself, so any help you're offering is highly valuable and very much appreciated. I would just add I haven't even got the book yet - its expected by the end of this week.

Miriam

lynn6156 profile image
lynn6156 in reply to bamboo89

Thanks for replying Miriam.

I spend a lot of time up to my neck in research these days (due to the flippin' book) and I did see a paper that suggested a new way of research now that the metabolic theories are taking more hold. They said we should maybe do trials on cell subtypes grouped together. So for example, I have mucinous ovarian which is rare but there are people with colon, pancreas and lung mucinous tumours so maybe they should all be treated under one trial. This has been looked at from conventional angles previously, when they threw in the bowel chemo for mucinous ovarian to see if it worked any better.

Similarly your neuroendocrine would find playmates amongst pancreas/gastro and lung. I think you're right in that if it was truly serous there would have been more indication and it should therefore be treated more as neuroendocrine.

Lynn

x

bamboo89 profile image
bamboo89 in reply to lynn6156

All I know is, they had an MDT meeting with neuroendocrine oncology way back when, and they all agreed that paclitaxel and carboplatin were the appropriate first line adjuvant ones because of the assumption it began as epithelial serous. To start with, presumably... they wouldn't discuss whether and when I would need any other types of chemo, you know they insist on this 'one step at a time thing' when discussing treatment. Avastin was originally offered, but withdrawn by the senior oncologist because of a blood clotting problem I already have which would have made it too dangerous to use.

As for the non small cell neuroendocrine, it does normally start in the lung, but a PET and CT scan revealed no primary in there, so it would appear it began in the pelvic region...

CynD profile image
CynD

I know I tend to be… WORDY. So, with real effort to keep my words at a minimum but my thoughts coherent, here’s my 2 cents worth:

“Terri” and I were diagnosed with Stage 3c epithelial ovarian/primary peritoneal cancer at the same time, at the same age. We had the same chemo, on the same schedule, the same amount of times. The things that were DIFFERENT about us all seemed to be in HER favor. I was overweight, she was normal weight. Her diet was entirely “plant based,” mine was decidedly, NOT. No co-morbidities for Terri, but I had diabetes, hypothyroidism, and, oh yeah, STAGE 3 COLON CANCER – the same cancer as Chris Wark, btw, whose videos we agreed to watch and then discuss. Neither of us could get beyond the hard-sell marketing that was loud enough to drown out how he claims to have “cured” himself, and I got a “blame the victim” vibe that a lot of “self-help” gurus rely on to explain why something didn’t work. In other words, if it worked for you then it’s proof that the promise was good, but if it didn't it’s because you didn’t do it right – you didn’t fully commit. In short, YOU are what failed you, not the method.

[By the way, I have to add here that I had surgery for my colon cancer just like Chris Wark did, and it was successful just like his was, and I have been in remission ever since, also without the use of chemo. Since I’m not far enough out from it, I can’t claim a “cure,” but I suspect what cured Chris’ cancer were his DOCTORS not his diet.]

Terri did the Vitamin C infusions and I didn’t. She paid out-of-pocket but I couldn’t afford them. I remember wishing I had the resources and did all this research on it to see if it might be worth trying to find a way to swing the cost, but frankly the science just wasn’t there to support it. So, despite doing all the things they say you should do, and being all the things that, statistically, should’ve put her at the advantage, Terri recurred before me and on December 5, 2018, she died – less than a year and a half in. I don’t know all the ins and outs of Terri’s cancer, or her life before cancer, and those things can equate to a BIG difference in outcome, but based on what I DID know, we were on the same path only she had a map and walking sticks, and I was carrying the luggage. I can’t explain why I’m here and she’s gone. Each of us are very unique and different and I think there is so much at play here that medicine is only beginning to understand. It’s absolutely exhausting to explore all the “maybes.” So, ultimately, I encourage you to do what has worked for ME… let go, as much as is humanly possible, and let God have it. I hope that doesn’t sound trite, and please don’t think for a second I underestimate the difficulty of the task, but I can attest to its success with my own personal experience. I have another CT and CA125 in a couple of weeks and the closer I’ve gotten to it, the more I’ve noticed I go in and out of fear, and worry, feeling distracted, anxious, and a little depressed as all the “what ifs” try to creep in. But the flip side of that is a distinct LACK of worry MOST of the time. In fact, if not for doctor appointments, cancer would seem like a distant memory. The last time I saw my Oncs (a month ago), MEDICALLY SPEAKING, supposedly I am the worst I’ve been. I am now recurrent, the scan shows cancer throughout my mesentery, my CA125 is just a few points from its highest, and I’m coming up on the point (5 to 6 months) where my doctor said I could probably go without symptoms or treatment before I will hit the point of no return if I don’t do more chemo. But I’m here to tell you that I feel good. No ascites like the 1st time (15 liters drained!), no pain, appetite fully (and shamefully) intact, nothing I CAN’T eat, having a hard time keeping weight off rather than on (like most cancer patients), no nausea, no constipation (unless I don’t stay hydrated), and emotionally sound. I feel good most of the time, and the only thing that I’ve changed along the way is the way I’m going about it. So what am I doing? NOTHING. I’m doing nothing. I’ve given it up and I’m letting Him do it all – all the worrying, all the fear… I’ve let go of all of that to cling to the promise that it’s all already been done FOR me – through His suffering (by his stripes I am healed), and His death on the cross (by I am forgiven), then His resurrection from the tomb. Christ defeated death SO I DON’T HAVE TO. I don’t have to do ANYTHING but receive this immeasurable gift. When I get mired down in fear, and anxiety, and worry, and things start to feel dark and uncertain (and it happens!), it’s kind of like saying to God, “Yeah, I believe and all, but really I think I can do this better than you, so I’m gonna take over.” Ha! This dyed-in-the-wool control freak can’t even put into words how relieved she is to not have to do that anymore. Writing this on this Easter Sunday is a wonderful reminder to you AND ME of the promises and love that are there for our taking! His is a “finished” work. CLAIM IT BOLDLY!

Love, Cyn

bamboo89 profile image
bamboo89 in reply to CynD

Well, it must be nice to feel supported by religious belief; I don't, I personally utterly reject religion; it requires too much suspension of disbelief and there are too many man made illogical stories and rules for me. I do not believe in judgement, nor heaven and hell either. But that does not mean I have no spirituality, I just tend to express it in psychological terms instead - its just man's version of religion I reject; all roads lead home anyway, in the end, so it doesn't really matter which belief route you take through life.

As for why some survive and many don't, I'll repeat here what the Senior Oncologist said to me when I had a long chat with him after my surgery. He told me that people left his department after treatment with an extremely good prognosis, and sometimes died within months; others left with a very poor prognosis, and were still around 10 years later - and they have no idea why. I must say I was full of admiration at his complete honesty, it must take a lot for a fully qualified and senior consultant to admit they don't know why, but he did... Sadly, they don't follow up what patients do or don't do during and after their treatment, so if they had done anything that might have made a difference, oncology would never know about it. Somewhat remiss of them, I'd have thought... but its a deeply complicated thing, to be fair.

As for me, I have said elsewhere that when I read Radical Remission, there's a list of things that people changed that appear to have contributed to their survival; what smacked me in the face was the mindset one... and that I have attempted to change. Somewhat easier to do when faced with accepting your own death; once you stare that in the face and accept it, it removes the fear one lives with most of one's life, and leaves room for appreciation, gratitude and joy to come in its place... It is a state of grace, to some extent, a giving up of control and an acceptance - you might call that religion, to me its just grace. I suspect we are speaking of the same thing - we're just using different terminology to describe it. In my case, though, along with that state of grace, I still have an intense curiousity - which is why I want to read Jane McLelland's book.

Miriam

CynD profile image
CynD in reply to bamboo89

Hi Miriam:

Thanks for your response. Actually, I never once used the word "religion," and, in fact, have a real problem with the connotation of the word. The same can be said for me of the word "Christian" which, technically, I suppose I am one, but I cringe at being associated with that label when, for me, it conjures up visions of the most un-Christian-like people – hard-right, evangelical, Trump supporting elitists! Politicians masquerading as men of God, ever-ready to heap mounds of condemnation upon our eternally damned souls for not living in fear of their almighty God. I have always been a believer, but I have come to my faith in a new way since cancer, since my recurrence, since Terri's death, and since I had too much time to be home and watch the world crumbling on cable news! I had to ask, like I had so many times before, what kind of God allows this kind of hell on earth to continue? Am I being punished? Does bad sh*t just happen to good people, and good stuff to bad people all the time, or what? Everything seems upside down! What's going on?! I went searching, again, for answers... REAL ANSWERS... not just something convenient to tied me over on the way to the grave! And THIS TIME I found them like never before. NEVER. People often talk about a revelation, or something happening to them in their journey – an epiphany where suddenly things start to click. I guess, that’s kind of what happened with me. Not really all at once, but little by little in ways it never had before. I’m a clinical social worker by profession, so I'm all about the psychology of things. It's always interested me and it's what I spent 6 years and a ridiculous amount of money investing in. I don't separate God and psychology, or God and science. I also don't associate God with religion (and realize I haven’t for a long time). I know all kinds of religious people, and some have nothing to do with God. I suppose it's kind of semantics that I'm referring to here, but anyone can be religious about anything, including God, but not always God, or even anything to do with him. I totally get you though. Most people hear "religion" and think God. But what I'm talking about is a personal relationship with my Creator. THAT gives me comfort. The more I understand His word, the more comfort it brings. But there has to be a way to connect to him. For me those ways are learning as much as I can and praying. Learning means understanding scripture and what it's really saying. Praying means talking, as long as I want and about anything I want. BOTH of those take wisdom, patience, and consistency. For me God is literally a father and I go to him just a child would their Dad – for love, protection, to feel safe, to be held when I'm afraid, to tell me everything is going to be okay, and then send me on my way with the promise that he is and always will be there. I didn’t have that in real life. Walking in faith, especially at this point in my knowledge and understanding, is a bit wonky. I know I don’t have my footing, but I know for sure what’s it’s done for me. Just like in social work, I have to constantly reframe every situation into something that better serves! I often hesitate to bring my beliefs into things, but truly, it's made such a difference for me that it seems wrong not to share it. Have a wonderful Easter!

Love, Cyn

bamboo89 profile image
bamboo89 in reply to CynD

Well its good to share... but I don't believe in a creator either, nor a substitute father in the sky... those concepts do speak of Christianity, or certainly one of the three monotheistic, Abrahamic religions as expressed in the Torah, the Q'uran and the Bible. But if those stories and ideas are your way of finding your spirituality and a sense of connectedness as well as comfort I'm not knocking that at all, I think its great ... it was certainly a very effective route for my mother in law, with whom I used to talk at length - her expressing her Russian Orthodox religious concepts, mostly in an attempt to convert me, me expressing the same concepts in psychological terms. She used to laugh a lot because she realised we were saying the same things.... but in different languages. I recall she told me on one of those occasions that I was a very wise woman, something I considered a great compliment from a woman who was pretty wise herself. But we are in the same space, you and I, for sure - I just got there via a different road... we are, in reality, lone travellers after all, we just use different routes. Perhaps what we speak of could be described as 'religiosity' rather than religion.

Take care and good luck

Miriam

Petrolhead profile image
Petrolhead in reply to CynD

Hi CynD

This was an interesting thread. It is a shame you feel the need to hijack it with your post about god.

Although you claim not to talk about religion in a reply , this is essentially what you have done. The mainly American forum Inspire has many such posts.

A return to the original theme of the thread would be good and in keeping with the original posters discussion.

As a matter of interest why do you suddenly start typing in capital letters. It is very odd , is it supposed to mean something?

Best wishes

Fay

bamboo89 profile image
bamboo89 in reply to Petrolhead

Oooh, (wince) bit strong Petrolhead, let's be kind... it is interesting to hear of the completely different outcomes that occurred with two women in the same position with the same disease, apparently randomly, and points up the fact that this does happen, as I mention in my answer re discussion with my oncologist. Being British, I'd describe that as sod's law, which would possibly be absolutely alien to American ears, and yes, its not exactly en pointe, but how people find their way through this difficult life and this disease in particular always warrants some respect, whether we subscribe to their beliefs of not, because none of this stuff is easy. Of course, to British ears, the religious content is particularly alien, since we are generally secular and Americans are, by and large, not, one of the major cultural differences between USA and here ... as for the periodic capitalisation, that's a very American thing, usually done for emphasis, I've seen it at times on Garden and Landscaping Stack Exchange, an American based gardening advice site to which I belong. 😊

Miriam

Petrolhead profile image
Petrolhead in reply to bamboo89

Hi Miriam

Unfortunately we do not really know how similar the cases were.

I have not disrespected anyone here. I was enjoying the original theme of the thread. Always happy to hear points of view of others but felt that such a railroad really should have its own thread. My view maybe not yours but as said before we are all different. 😀

As for the capitalisation I am afraid you had a whoosh parrot of my irony on this. I also belong to American forums. Perhaps I should not try and be so subtle.

Best wishes

Fay

Ps this was an extremely kind response to many I read on car forums I am on. Different type I know but still if on the internet then anything can happen!

bamboo89 profile image
bamboo89 in reply to Petrolhead

Ah, so that's why your chosen name is Petrolhead, I've always wondered... I've sent you a message separately...

Miriam

Zssu profile image
Zssu

Hi Miriam, have read this thread with great interest and at the risk of sounding patronising thoroughly endorse your approach. We have to weave our own path of conviction through this disease but with a very open mind.

Just an amusing aside:

I am still waiting for the day we can buy veg with insect munch marks on it, proving it is truly fit for human consumption!

bamboo89 profile image
bamboo89 in reply to Zssu

Ha ha! Grow your own veg if you've the room, plenty of munch marks on those, sometimes to the point of inedibility! And I didn't find what you said patronising at all...

Miriam

recurrentovc profile image
recurrentovc

I've been implementing some of her methods since Dec 2018, without chemo, and its brought my OV215 lower, inspired and helped me to get active again. I'm very grateful for 6 months of improved lifestyle!

I still have a regular abdominal ascites accumulation, but the condition of my peritoneum has improved making it so much easier to have the drainages done.

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