Insurance for cancer sufferers

Remember that painful advert from a few years back - "Tax doesn't have to be taxing?" (yeah, right....try saying that to the millions of self employed people there are out there...)  well, one of the things that kept Amanda's ever present positivity since she was told she was terminally ill last October was getting one last chance to visit our beloved villa that we're very fortunate to have in Spain. 

As the winter passed and various life rollercoasters were negotiated, we were finally provided with the OK to travel by our local medical team. One thing that many of us take for granted is travel insurance. However, as many with longstanding medical issues will testify to, you're likely to be quoted ludicrously high prices for travel insurance by most insurers.

I'd already done some preliminary research over a year ago before Amanda's situation deteriorated and wasn't overly surprised to find that some companies were quoting upwards to £2,500 for a European 15 day trip. This quote was competitive compared to many, with some insurers even refusing to provide quotes such as was the risk factor that serious medical issues seemingly attract. In July 2015, I saw a Facebook post which had gone viral. In the post, a woman had gone into detail in describing how difficult it had been to try and obtain affordable travel insurance until she came to find out about a company called Insurancewith.  To date, the Facebook post has attracted over 170,000 shares.

So, many months after seeing this post for the first time, I called Insurancewith in April 2016. It took nearly 70 minutes to go through all the details given the complexity of Amanda's medical history (recent and past) and the ridiculously high number of medications that she is still taking. After referral to the medical underwriting team, they were able to offer a policy for cover for a little over £100. Yes - just over £100. I suspect many regular travellers pay more for their two week summer insurance policy than that. They were very patient and understanding throughout the quote process and we were delighted that we wouldn't have bear the brunt of Amanda's medical record. We received a similar quotation for our trip to Spain in August 2016.
Insurancewith started business back in 2007 when professional insurance broker Fiona Macrae was unable to find travel insurance at a reasonable price which also covered her cancer diagnosis. Read more about Fiona's story here.

We've not had to claim on the policy thankfully, but we're relieved that Insurancewith have enabled us to have affordable easily accessible holiday insurance in light of Amanda's pre existing medical conditions.

Also, if you're travelling to Europe anytime soon, make sure you take or obtain your European Health Insurance Card before you travel. It (currently) entitles the card holder to free or discounted medical treatment at state-run hospitals and GPs in any European Union country, plus Iceland, Liechtenstein, Norway and Switzerland. Find out more about it here. 


Dean (Amanda's husband)

The roller coaster of life

The last few weeks have been a roller coaster ride that even Alton Towers could not match. First I lost my brilliant, witty and whimsical Mum. I feel her loss very deeply but manage to remember the many good times, the love and the laughter. In quiet moments I reflect on her life and legacy. At other times my head is so full of thoughts that I feel like they are going to burst out of my ears.

Alongside the lows, as most of you know, I experienced a miraculous high: my great news about my 'upgrade' from 'terminal' to just 'secondary'. I celebrate every day and thank God for the reprieve I have been given.

In addition, we also made a difficult decision this week to clear out my late sister Steph's bedroom; a task that was long overdue. Amongst the precious mementoes were some real treasures, a padlocked diary, a hand-made book of '80s song lyrics and a guide to our top secret 'Butterfly Club' (founder members, Steph's best friend Karen, me and my sister).

So, as always, there have been some beautiful moments, some time for sadness and the slightly receding, but omni-present shadow of cancer.

To paraphrase a well known song lyric, I've been getting by with the help of my amazing husband, extra-special Dad and wonderful friends. Let's hope, to labour the metaphor, that I can remain on track.

A much needed boost

As you would expect, the last few days have been extremely emotional. Mum's funeral is on Saturday and I have been belting out her favourite song, 'I am what I am' by Gloria Gaynor in her honour. With tears pouring down my cheeks, I recall her face and revel in the plethora of memories I carry with me.

It was also a big week for my health as I had an appointment with my brain surgeon. Now good news has been evading me over the last couple of years, but, to mix my metaphors, today was a shimmering ray of hope. Having been told by my oncologist that he was wrong about my terminal diagnosis, this was reinforced by my brain surgeon who smiled as she booked me my next appointment in JANUARY! I haven't unravelled the bunting yet, since I still have secondary breast cancer, the remnants of two brain surgeries and an aggressive cancer waiting to pounce, but it's great news at a time when it was most needed. My terminal diagnosis has even been down-graded to 'secondary' and it has restored mine and my Dad's hope at a painful time.

I feel like it's a major blessing and I am so thankful to God and to my friends, family and well-wishers. Where there is faith there is also hope and for that I am truly thankful.






My special friend,
There are no words to describe how pleased I am at this incredible news. I have said for a long time that you're a walking miracle and would defy medical science. It may have started out as a joke but you've proven me right. Nobody deserves this glimmer of hope after the last 3 years more than you. I am now so looking forward to more special times with you, regardless of how long both of us have left on this earth but hopefully we'll both be around for a long time yet and having rooms in that nursing home may one day become a reality.
Debbie

Sad news

On Saturday, my clever, quirky, brilliant Mum left this world for the next. Known for her off-the-wall sense of humour and passionate beliefs, she has left a big hole in the hearts of those who loved her. An affectionate person with lots of love to give, Mum wouldn't pass a homeless person without giving them some money and she was particularly drawn to life's under-dogs whom she thrived on helping. Fiercely loyal, she was also very thoughtful, and birthdays and Christmases were ideal opportunities for her generous present giving. 

Sadly, however, her life was blighted by my sister's death and she never recovered from this agonising loss. Steph and Mum were like kindred spirits and loved animals and sunny days. They were just happy to be in each other's company. Without her, life was difficult, and we tip-toed through debilitating periods of sadness and frustration.   

Despite this tragedy though we had many treasured times including lots of holidays where we mostly laughed like drains at our family's in-jokes. We particularly loved Spanish holidays where Mum would be happy dangling her feet in the pool and enjoying the sun on her face. Moments to be treasured.

At times a force to be reckoned with, at others a fragile soul, wearing her heart on her sleeve, she was a complex person with a storming intellect.

My world will be significantly the poorer without her.  

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