Alternative therapies - guest blog

This is a guest blog from my friend, Jayne, who is currently buzzing round Europe in a camper van with her husband, Mark. She has been trying a variety of holistic treatments to treat her secondary breast cancer. She has kindly allowed me to share the latest leg of her journey with you.

I've decided to do this general update to all of you as so many of you have asked for details of my treatment and the results.

I chose to go to the Klinik Marinus am Stein in Brannenburg, Germany, (look it up online: awesome place!) Their cancer therapy is gentle and adapted to the patient’s requirement for the best quality of life possible, by means of medical intervention in the growth mechanisms of the cancer cells without damaging any healthy cells.

I had chemotherapy three years ago so I know what is involved and in light of being informed that I can no Ionger be cured, then I wanted the least invasive treatment possible to enable me to have some quality of life during the time I have left. I started treatment at the clinic on 20th May 2016 and finished on 12th June.

During that time I had local hyperthermia in conjunction with the cancer restraining medicines, Artemisinin, Buserelin and Thymus Peptide alongside Mistletoe injections. I also had Selenium and Ozone blood drips along with Magnetic Field, Bio-mat and Oxygen Therapy. I was also taking lots of vitamins, minerals and probiotics daily. After all this I still had time each day to walk or ride my bike, to climb a mountain or swim in a waterfall. I wouldn't have been able to do that after chemo!

At the clinic they monitor the progress of your treatment through blood tests and look at two different tumour markers:
CEA (general cancer) down from 70 to 42
153 (breast cancer) down from 504 to 349
Amazing results but both should be below 40 so I've still got some way to go!

The clinic gave me lots of medication to take away with me. Mark said we needed a trailer behind the van just for my drugs! The Doctor there thinks our road trip is a great idea and says it’s just as important to 'love the life you live' as the treatment itself. I do have to get regular blood tests to keep an eye on things and may end up having to interrupt our travel plans to go back to the clinic for more treatment at any time.

Before leaving for Germany I also visited the Penny Brohn Cancer Centre in Bristol and was advised by their Oncologist to read the following books, both written by Doctors, which I found very inspirational:-
Radical Remission, surviving cancer against all odds by Kelly A Turner PhD and Anti cancer, a new way of life by David Servan-Schreiber. 

I am telling everyone about these books and in light of the prediction that cancer is going to affect one in four of us, I urge you to read them. It's too late when you or someone you love is diagnosed because your 'head is a shed' and you just won't have the time to take it all in.

Since leaving the clinic we have travelled through Austria and Italy and we are currently in Caravigno, near Ostuni, Southern Italy doing a house-sit for six weeks in a converted olive store looking after eight dogs! We've got olive, almond, fig, apple, peach, pear, plum, quince and mulberry trees in the grounds and it's remote and rustic and fab!

This is only day 45 of our year out and we have already seen some awesome places and met some amazing people who I know will be part of the rest of our lives. I don't know if this treatment will succeed over the cancer or not but I'm going to continue to give it my all. Either way, I will never regret this decision because I'd much rather be swimming in the ocean, or sleeping under the stars, climbing a waterfall or mountain or swinging in a hammock under the olive trees than hooked up to a drip in a hospital on chemotherapy feeling too poorly to enjoy my life.

I hope all is well with you and yours, be happy and see the beauty in every day.

Jayne

Health update

As documented in this blog, over the last few weeks I have had a number of hospital appointments to chart my progress. The first appointment was with my oncology team. My specialist is one of the top oncologists in the country and we were lucky to secure an appointment with him. I had not yet had my scan, so there was little evidence to digest, however, he was pleased to see that I was looking healthy and commented that he was happy to be wrong with his "months not years" prognosis (which has already expired).  

That's only part of the picture though. 

The other team I am under the care of, is the brain team. My surgeon is a highly talented brain tumour specialist who orders periodic scans to monitor any changes in my brain.
As my cancer is a "secondary" to the brain, this means that it has spread beyond its original location (the breast) and is made up of Triple Negative breast cancer cells that happen to be in the brain*.


A key characteristic of this type of cancer is its rate of growth. Most Triple Negative breast cancers are grade 3, the most aggressive kind, and have an extremely high likelihood of coming back very quickly. This is partly because the hormonal treatments don't work. In other words, a Triple Negative breast cancer diagnosis means that the tumour is negative for oestrogen receptors, progesterone receptor-negative and HER2-negative. That's why it's called "Triple Negative" breast cancer.

*Most cancers have a usual journey through the body and breast cancer cells are more likely to spread to the lymph nodes or the liver. Less common is a secondary tumour or tumours in the brain as I have. Mine moved from the breast (discovered in November 2013) to the brain ("secondary" diagnosed in May 2015) and I was diagnosed as "terminal" in October 2015. 

So where am I at?

For now I'm OK. If the scan is clear that is fabulous but temporary news; the oncologist has warned that the tumour is highly likely to come back sooner rather than later. If it's not clear, then we need to explore the options for further surgery. 

So, I'm taking each day as it comes. If I get a further reprieve, I will squeeze in as much life as I can, as life is SO precious. I don't intend to waste a second of it.

Amanda

Rant alert

I read with interest this week, the coverage of Noel Edmonds talking about cancer and negative energy (read more here >>> http://www.bbc.co.uk/news/uk-36470979). Whilst everyone is entitled to their opinion, I was saddened to hear his views. What upsets me is the implication that I am in some way responsible for my cancer. I have been tee-total and smoke-free all my life, been pescetarian for the last ten years and always been fit and healthy, exercising regularly. I've also been a person with a great deal of positive energy and a strong faith. So I find it very difficult when people attempt to attribute my illness to "lifestyle factors" or attitude.

The fact is, that only half of us will survive cancer for ten years or more. It's ridiculous to hypothesise that only those with a positive attitude will make it. Early diagnosis, aggressive treatment and sheer good luck are the real influencing factors in determining which half of us will make the cut. There was nothing I could do to avoid having terminal cancer at 42. All I can do now is be grateful for every laugh, every prayer, every moment with a friend. I may not make it to the ten year mark but I sincerely hope to be lucky enough to enjoy what time I have left.

Amanda

Race for Life

Tuesday night was an emotional one for me. It was the Race for Life 5k at Trentham Gardens. Two years ago I went to the same event. I had about three small tufts of hair on my otherwise bald head and was unsteady on my feet. Some women clapped me as they passed, but most notably a complete stranger came up to me and squeezed my hand. I was so moved that tears were rolling down my cheeks.

Yesterday was equally emotional. I was struck by the women's strength and power as they flew past me to the finishing line. I was also swallowing back the tears at the complex web of love, friendship and remembrance that surrounded me. A little girl was wearing a T-shirt with her late Dad's face on it and others had several names on their backs. Everyone was dedicating their efforts to someone.

Most of all I was struck by the sense of camaraderie that the event created, not to mention the amount of money raised. I also had a fleeting thought that next year in all likelihood I would not be there and I would simply be a memory pinned to the back of one of the runners.

Well done to everyone who took part in this extra special event.

Amanda

Do not worry about tomorrow for tomorrow will worry about itself

Periodically over the last few weeks, I have had some bouts of sickness and some dizziness, coupled with the most hardcore sleeps. There's no immediate cause for alarm, however, it's difficult not to let the occasional worry slip in. Being terminally ill is an odd concept. You're still you, feel like you and are prone to everyday concerns like you always were. But there is now an extra dimension to the worries.

So I have two ways of allaying my fears. The first is the medical route. I have an oncology consultant and a surgical team investigating my progress and have appointments with both coming up. The surgical team are the more optimistic of the two and once I have my scan results, they will decide whether (a) I am in the same boat as the last scan - a wonderful option with no further action at this time, or (b) there have been some changes to my brain and there is a new/enlarged tumour which will need action (perhaps more surgery, possibly cyber-knife).

With this route, I will have all the facts at my disposal and there is something reassuring about knowing what's what, whether it's good news or bad.

The second route (which is concurrent to the first) is about relying on a powerful combination of faith, hope and love. My faith will guide me through, regardless of the outcome, I will never lose hope despite the bleakest of prognoses, and the strongest of all, love. The love of my friends and family lifts my spirits and for that I am truly thankful. So for now I won't waste precious time worrying, and instead be grateful whatever happens.

Amanda  

P.S. Please pray/hope for option (a)

It's the 3% that worry me