In support of Annie's effort for raising public awareness about unfair practices in cancer treatment and more

[Niobe]

Thank you, Annie, for all your effort and time to contribute in making known that cancer patients in Wales are not able to use Bevacizumab (Avastin) for their treatment as easily as patients in other parts of the United Kingdom. I owe it also to you that I became aware of the existence of the Royal London Hospital for Integrated Medicine and the possibility of getting a prescription for Iscador injections through the NHS rather than a private homeopathic doctor.

I have been an ovarian cancer patient, stage IV, for almost two and a half years. I have just finished a third line chemo treatment and I was away till yesterday for a short break, that is why I'm trying to send this message to you in the form of an open communication this morning.

My suggestion is that there is more to be made publicly known about this unpredictable disease and perhaps we could have an exchange of ideas devoted to this issue, if there is any interest at all. My particular interest is the lack of awareness among orthodox oncologists of Iscador as a form of maintenance medication against cancer widely used, to my knowledge, in Germany, Switzerland, Holland, Austria, Denmark, Israel, the USA and Canada. Why is there such lack of information about its existence here in the UK? Is there any reasonable explanation? It is true, Iscador does not work for everybody, but neither can any chemo drug claim success with everybody. In the end a successful choice of a drug can also be a matter of good luck since the interaction of our body with each drug differs from person to person. A patient though should be aware of choices and the reason for making a particular one.

Also, there is a widespread belief that exercise is a very good component in the fight against cancer. Instead of all this being mentioned just in leaflets which we may pick up but not read thoroughly, should it not become the task of each oncologist to encourage and make sure that their patients choose a form of daily exercise that suits them? This way would be more personal, the message could get through more effectively.

There are many conflicting views about diet. Some sort of common ground ought to have emerged by now as a path to follow rather than us be left in the wilderness to research and make our own choices.

There is a huge problem with pharmaceutical companies dictating research towards very expensive drugs by giving grants only for the research in their preferred area. We, as patients, are immediately affected by this practice. Perhaps we can make a difference by raising awareness. There is a lot of information about this practice and its harmful consequences.

I am immensely grateful for the existence of these two blogs, TeamInspire in the USA and Ovacome through HealthUnlocked in the UK, because of so much valuable information I was able to digest through personal stories of patients who were prepared to share their experiences. In this way I came to believe, "I'm living with cancer, I'm not dying of cancer." The fact that I shall soon become seventy and have a stage IV ovarian cancer, despite the statistics about survival rates of 18-25 months, has not deprived me of discovering new venues of adventure in my life. I know I may die tomorrow but today I am alive, I can enjoy what I have.

I shall finish my contribution to this debate with an extract out of an email I sent to a friend from the break we had recently and wish everybody in this blog good luck and the very best for joy in life, the way each one of us perceives it.

"Well, we feel triumphant this afternoon coming back after an 11 and 1/2 km. walk by an irrigating channel, called "levada" in local Portuguese, at a height of 300 metres, circling fifteen deep valleys, one after the other, terraces everywhere, with numerous vegetables and vines on prime soil, and, to crown it all, forests of mimosa trees in blossom all the way aromatising the breeze; mountain villages and faraway views all around. This is paradise on earth for me and I'm glad I had the opportunity to enjoy it at this stage of my life."

Niobe

[wendydee]

Well said, Niobe! I agree with you on so many of your points.

There is so much in the natural world that can give us happiness and can be of great interest in terms of seeking for treatments.

No doubt, in the olden days, I would have been going to the local 'wise woman' (later classed as witch in so many communities!) to seek healing plants and potions. When we think of the power of willow bark (aspirin), ginger, aloe Vera, turmeric, arnica etc. there is much to be explored yet in terms of effective drug therapy. There must be so much out there.

I will return your quote with one I read this morning.

'What if the cure for cancer was there to be discovered in the future by a child who cannot afford an education?'

I love your joy in the here and now. I agree totally. You've inspired me to go out for a walk in the sunshine!

Over to the next respondent for their recently discovered quote?

Love Wendy xx

[Hidden]

Wow Wendy, what a powerful quote! Nothing to match that one.

Niobe your walk sounds gorgeous. The natural world is a wonderful place indeed. It has yielded much that heals the body and it certainly heals the soul!

[Hidden]

Niobe ... I love nature too in the way you do .. I'm really happy for you. Your joy is contagious.!

[Niobe]

Thank you very much, Wendy, Monique, TinaB, for your appreciation and kind comments.

Enjoy a very bright day!

Big warm hugs

from Tina

[Anne-2]

Hi Niobe

What a lovely day it is! Your walk sounded marvellous. We've gone for a walk already over our local rec. with a dog we've rescued in order that my husband keeps fit after having heart surgery last year. Unfortunately, Tommy, is a 'mature' Westie with small legs and doesn't move very quickly, but it gets us out into the fresh air and on beautiful days like today everything seems so good.

Love

Anne

[Niobe in reply to Anne-2]

Thank you, Anne. Fresh air and sunshine keeps us going for sure.

To more joys!

Niobe

[Orsolini]

What a wonderful post, thank you (of course I agree with a your comments, especially about his site which has been of huge help to me) Nicola

[MargaretJ]

Hi Niobe!

Well said!

Unlike your Greek namesake you are not (I Hope) "All tears"! I can beat you for age! I will be 73 at the end of this month and will celebrate my 4th anniversary of diagnosis with stage 3c Ovarian cancer on 2nd September.

I have given up on long walks because my back has been affected and I do not want to inconvenience others! I am, however, able to cycle and I am just off out on my bike foer my daily exercise!

Love Margaret!

[Niobe]

Hi there, Margaret,

No, I'm not all tears. Niobe is one of the names my Godfather gave to me. He loved Greek mythology. My Christian name is Fotene, which means light giving. I would like to think

I am full of light and joy.

How lovely that you can still cycle! My biggest adventure in cycling was going with a lady friend to Brittany, Plymouth to Roscoff, then cycling around that area. I treasure the memory.

We left our families behind for a change...

To more joys!

Big warm hugs and love

Niobe

[Jan76]

Hi there Niobe ..

You do indeed sound full of light and Joy and with your wonderful blog here I think you will be spreading much of that light and Joy around .

So do agree with you on the exercise ...I am this evening of to my exercise class which In attend each week and I found out about it while still having chemo last year from our local cancer centre .

I went to a talk on exercise during chemo and after and it was while there I was given the info on it . Not everyone would have gone to that talk so agree with you when you say that its something that the consultants should be talking to patients about .

I was refered onto the scheme by my GP, it has to go through them but it took a few weeks and then I started last September and have been going since .

Hubby and I also love walking .. winter or summer ....

The walk you describe so well was it in Maderia ... not sure its it spelt right ....

Thank you for your up lifting blog xxx

Love Jan xxx

[Niobe]

Thank you for your lovely message, Jan.

I'm so glad you saw the point that oncologists should be personally involved in encouraging their cancer patients to have a form of regular personal exercise that suits them. Since exercise is so high in the agenda for the wellbeing of each one of us, it should not be left to chance discovery. There should be a directive by the NHS to every single oncologist about this issue. As a teacher I did my best to involve every student in the process of learning in a personal way. I did not leave it to chance. It is not an infringement of personal rights and choice. It is a sign of rounded care.

Yes, the walk I described is one of the levada walks of the Madeira island, from Marocos towards Canical. I wish it was a bit nearer....

How lovely that you were able to discover a form of exercise that suits you and you enjoy walking with your companion as well.

Best of luck with your fight. It is wonderful to be keeping our spirits up.

Thank you for your appreciation. It is also helping me.

love

from Tina

[Madz]

Thank you for your interesting and uplifting post. I'm going for a ct scan this afternoon having finished chemo at the end of March, not sure what's round the corner so it cheered me up to read your post as your philosophy matches mine, life is for living and I will make the absolute best of it for as long as I can.

Here's to life, love and laughter

Hugs Amanda xx

[Niobe]

What a lovely message! Thank you, Amanda. We shall plug into cosmic energy and not let anybody diminish our pride and joy. I hope you hear good results after your scan which can be helpful.

Big warm hugs and affirmative vibes all the way.....

Niobe

[Whippit]

I can't believe I've only just read this blog by Niobe and that's only because you sent some PMs recently. Niobe - thanks so much for your thoughts. Thanks for your concern about equality of access. Thanks for sharing your philosophy. Thanks for your recent PMs. You must've thought me very rude not to have replied before.

Love Annie xxx