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In July 2012, at the age of 38, I was given the devastating news that I had advanced ovarian cancer. This is my blog and the story of my fight to regain my health. I hope to share with you things that I've found helpful along my journey and keep you posted on my progress.

Friday, 9 October 2015

No More Pain and Suffering

This is John, Beata's husband.

I am so very sad to share with you the news that my beloved wife Beata passed away yesterday, bringing to a close her 3 year battle with cancer. She showed the most amazing strength and courage during her fight with her illness and touched so many people's hearts with her grace, beauty and beautiful spirit. It has been so heartbreaking to witness her suffer and to lose the person who has brought so much happiness and light into my life over the last 4 years, but I am relieved that she is now at peace and is no longer living with the burdens of fear and pain. I will be eternally grateful that she came into my life and that she gave me one of the most precious things she had – her time. I could not have asked for a more loving and special person to share my life with – we made a great team, had an amazing journey together and I will miss her so very much.

If you are reading cancer blogs like this one looking for hope, as Beata and I did many times, please do not dispair that this story has a sad ending - what may not have worked for Beata may still work for you and new treatments are always in the pipeline.  If someone reaches out to you and offers you hope, don't be put off by the doom mongers who dismiss this as false hope - there is no such thing as false hope, only false abandonment of hope.  Let nobody put a timeframe on your life or tell you that death from your disease is inevitable. Keep up the fight and relish the gift of life.

Beata Piears : 3 May 1974 – 8 October 2015

Dying for a Cure

Over the last 3 years Beata and I learnt a great deal about cancer and some of the problems with the way Society is trying to tackle it.  One person dies of cancer somewhere in the world every 8 seconds, yet drug companies make over $100bn a year from selling cancer drugs and have the highest profit margins of any major industry in the world.  This scale of profiteering from human suffering is morally incomprehensible. Cancer has become one of the most lucrative business opportunities on the planet, so faced with conflicts of interest like this there is little incentive for drug companies to hurry up with developing cures.  As one researcher put it, "we may be winning the war on cancer but we're not winning it fast".

I wanted to do my bit to help raise awareness of these issues so have published an article on Huffington Post that is also partly a tribute to Beata:

Kilomanjaro for Cancer

Since Beata passed away in October I’ve been thinking about something fitting that I could do in her memory that would also allow me to give something back to the charities that helped her.  I wanted to do something significant that reflected the scale of the challenge she faced and also the courage and determination that she showed during her fight.  So, I am planning to try to climb the world’s tallest freestanding mountain – Mount Kilomanjaro!

A good friend of mine has agreed to join me in this quest and next September we will both be setting off for a 10 day expedition to the summit of Kilomanjaro, 6km above sea level, where the air has less than half the amount of oxygen we’re used to and where temperatures can be as low as -25°C.  We’ll be hiking through four climatic zones to get there, starting off in temperatures about 30°C.  Each day of the ascent we’ll be drinking around 5 litres of water a day to keep hydrated and burning around 5000 Calories a day of food and fat!

Between now and September we’ll be doing a lot of training to get fit and also trying to raise money for the two charities that helped Beata the most - Yes to Life and the Princess Alice Hospice.  We’re both paying for our own costs, so all the money we raise will go to the charities.

If you’d like to sponsor me you can do this through my fundraising page on Virgin Money Giving:

Thank you all for your support. 

Friday, 22 May 2015

Reluctantly Starting Treatment Again

Hi everybody,

I’ve come to another turning point in my story, so I just wanted to give you an update.

As I mentioned in a previous post, my cancer has been growing rapidly again since January and I’ve been considering what my next move should be.  My latest blood test showed that my tumour marker has now risen to 1805 – a long way from the ‘normal’ range of 35 or less, so reluctantly I know I’m going to have to start some form of treatment very soon.

I’ve been looking into all the options and sadly none of them are very appealing, so I wanted to take a few weeks to think things through before committing to something.   Standard treatment for someone in my situation is weekly chemotherapy but only about 30% of people respond to this.  Also, 100% of people suffer from damage to their immune system as a side effect.  As I feel that my immune system is key to any chance I have of beating this awful disease, I want to do all I can to protect it.

So, I’ve also been looking into clinical trials of new drugs to see if there any better alternatives.  There are only two trials that I’m eligible for.  Both are trials of new targeted drugs that help to stop the cancer growing further, without damaging the immune system, but neither would get rid of the cancer and both carry risks of other serious side effects.

Another thing I've been looking into a new surgical technique called Nanoknife, where surgeons electrocute tumours by zapping them with 3000 volts!  This is a really new technique and is only available at one private hospital in the UK.  When I initially enquired about it, the Professor in charge said that I was a suitable candidate for it but my latest scan showed that my disease had progressed and unfortunately they told me that I was no longer eligible.  I was really disappointed as this had seemed like a great option, with no real side effects and good success rates.

I’m also still desperately trying to raise money for other treatments privately and abroad that may help me: high dose intravenous vitamin C, Ayurveda medicine and the sono-photo dynamic therapy in Mexico with herbal infusions.  All of this is still beyond my means at the moment, so I’ve made a decision to go ahead with one of the NHS clinical trials (called ONX 0801) and should be starting treatment on 26th May.

The trial involves me having infusions of the drug once a fortnight.  I’ll have to be at the hospital all day once a week for them to give me the drug and to monitor me and stay overnight initially when the first give me the drug.  I can only have it for a maximum of 6 months, as it can cause lung damage and is not considered safe beyond this (previous tests of the drug at higher doses caused serious lung problems and fatalities). Unfortunately, none of this is very encouraging but I think this is the best option I have right now.  I’ve had a port implanted in my chest, so that they can use it to deliver the drugs and take blood without having to stab me with needles every time!  This was done under general anaesthetic a couple of weeks ago.  It’s still a bit uncomfortable but I’m getting used to it now. And I’ve passed the screening, so I’m all set and ready to go next week.

Meanwhile, as I know that I can only stay on this trial for a maximum of 6 months, I’ve already started researching what to do next!

I’m quite anxious at the moment with everything that’s going on, as there are so many uncertainties – I’m the kind of person who likes to know what is happening all the time and I find it very difficult with cancer and all the treatments, as I don’t have any control over them. Everything is always ‘wait and see’.

One last husband (it’s so strange to call him that but give me a very fulfilling feeling in my heart) has been continuing with his campaigning to encourage the Government to Do More for Cancer.  He has recently had an article published by Huffington Post entitled “The UK Has Cancer - And It’s Spreading Fast, Like...a Cancer!”.  He has also had two replies from a letter he sent to all the main political party leaders – one from Nicola Sturgeon (Leader of the SNP) and one from Prince Charles, who he copied on the letter!  You can read the letters here:

Reply from Nicola Sturgeon (Leader of the SNP)

Reply from Prince Charles

If you haven’t already done so, please help us by signing our petition on to urge the UK Government to Do More for Cancer.

And if you feel you are able to make a donation to my fundraising appeal, I would be very grateful.

Tuesday, 21 April 2015

Do More for Cancer

Hi Everybody,

Just a quick note to say that my husband John has written a letter to all the main political party leaders, urging them to set more ambitious targets, to be bolder in tackling the barriers to progress and to give cancer a much higher priority.  You can read John's letter to the Party Leaders here: 

Letter to Party Leaders urging UK Governement to Do More for Cancer

In an attempt to offer constructive suggestions, he has sent them a copy of an article that he has written entitled “Cancer – Where are we going wrong?”, which offers a carer’s perspective on cancer care in the UK and where he feels our management of cancer is sub-optimal and could be improved. You can see an online copy of the article on my website by clicking on the link on the right or you can read the PDF version sent to the Party Leaders here:

Article sent to Party Leaders : Cancer - Where are we going wrong?


Support our Petition - Do More for Cancer

If you believe that the Government should be aiming higher and setting bolder targets for improving cancer care, please support our petition to urge the Government to do more for cancer (#domoreforcancer).

You can sign the petition at : 

Please also help us by telling your friends and family about this initiative - the more we publicise this the more influence it will have.

Waiting for treatment – the impatient patient!

Hi everybody,

A month has gone by since my last post, so I wanted to give you a quick update on what’s been happening.

The short answer is that I am still waiting for my next treatment to start and things are moving along at a frustratingly slow pace.  I am due to have a port inserted into my chest, which they can use to give me the new trial drug that I’m hopefully going to be having and also to take blood.  The surgery for this is scheduled for the 27th April and has to be done under general anaesthetic, but I’m hoping that I won’t have to spend the night in hospital.

I am seeing the Drug development Unit at the Royal Marsden on Friday 24th April to discuss the screening and other arrangements for the trial and hope to start it in early May.  I am still not 100% sure if I’m going to qualify for it, so I’m becoming a bit anxious, as it seems to be taking a long time to organise.

In the meantime I’ve decided to change my diet again to be stricter with foods that I think will support my body’s natural defences.  I’m now on a raw food diet, which I’ve not done before.   I thought this might be quite hard to do but I’m actually finding it easier than I thought.  For breakfast I am having a pint of green juice, a small bowl of berries and occasionally a kiwi fruit.  Around mid-morning I have another pint of green juice and then for lunch I make a big organic superfood smoothie, which contains about 16 ingredients, including kale, avocado, some fruits, nuts, seeds, coconut oil, protein powder, unsweetened almond milk, distilled water and some super foods like spirulina and goji berries.  I usually finish this by 2pm and then fast until the next morning (around 18 hours).  I am hoping that this will help to detox my body and get rid of a little extra weight at the same time!  The good news is that I feel good on the new diet, so I’m pleased about that.

It’s also now just over a month since John and I got married.  I am pleased to report that married life is going well!  Of course not a lot has changed on a day to day basis, but the fact that I now have a wedding ring and that we are pledged and committed to each other means a lot to me.  I am still in the process of changing my name on various documents.  It’s quite difficult to get used to my new surname, as it’s a big change for me after 40 years with the old one, but I am enjoying being a “Mrs”!

I’ll update you again when I know more about the clinical trial.  I'm also hoping to be able to report soon on an article that John has been writing about issues with cancer care in the UK.

Thank you for all your ongoing support.  Please feel free to get in touch with me or post any comments below.

Saturday, 21 March 2015

Chemo ‘Hiss’, Wedding Bliss

Hi everybody,

Sorry it’s been a while since I updated you. Here’s what’s been happening.

As I mentioned in my previous post, I recently went to see a practitioner in Cardiff who uses techniques from Brandon Bays’ well known book, “The Journey”.  I had 3 sessions in total over 3 days.   I found the whole experience quite emotional but it did help me to come to some realisations and I’m very pleased that I did it.  Even though I didn't have a massive breakthrough, I'm happy with what I've got out of it. Thanks to these sessions I had couple of blissful days where I felt only gratitude and love during the whole day.  It was absolutely amazing and unforgettable.

I have also been to Germany to try an immunotherapy treatment called immunepheresis. I was there for three weeks. Although the clinic has had a lot of success with this treatment, unfortunately it did not work for me.   In fact when I checked my tumour marker three weeks after I came back, it had gone up to 4 times its previous level.  I also had another CT scan recently and this confirmed that the cancer has grown. I was very disappointed, as you can imagine, as I really did feel that this could help me, but I think my immune system was simply too weak after all the chemo I’ve had.

The only approved treatment available to me now under the NHS is more chemo, this time given once a week at smaller doses instead of once a month, but I really don’t want to have more chemo – while this may reduce the cancer again in the short term it will also cause even more damage to my healthy cells, reducing even more the chances of long-term remission.  Plus the side-effects are likely to make me feel very ill for much of the time, as well as causing me to lose my hair again.

So, I’m looking into other options.  I asked to be referred to the Drug Development Unit at the Royal Marsden, which conducts very early trials of new drugs, some of which have never been tested in humans before.  They have come up with a suggested trial for me to participate in which would involve weekly infusions over the next 6 months.  There are risks with the trial but the treatment seems much less toxic and damaging than chemo, so I am seriously considering this.  The doctors don’t expect it to work long-term though, but hopefully it would give me some more time to try to raise the money I need for the other more promising options that I’ve been looking into abroad.

I also arranged an appointment at The Royal Surrey hospital to see what clinical trials they had available to me.  There was one trial going on there that I thought I might be eligible for.  This was a trial of an immunotherapy treatment that uses a virus to fight the cancer. Unfortunately, it turned out that I was not eligible for that particular trial. So that leaves me with only one option under the NHS and that is the Drug Development Unit trial at Royal Marsden.

In the meantime I got married! Hooray ;-))

The big day came and now I am taken :-)) I have to say it was such a lovely and perfect day. I couldn't have asked for anything more. Everything was just as I wanted it to be. I was very nervous on the day, as I had a lot of things to do that I had planned out, but everything worked out perfectly. The wedding was very small and intimate and it was very emotional. We were lucky enough that a small group from the Rock Choir sang a song at the ceremony, as my husband is member of the Guildford Rock Choir, and that made it even more special. The small but perfect reception had an amazing atmosphere thanks to our lovely friends and family and I am still in a dreamland as a result of everything that happened. We didn't go on a honeymoon for financial and health reasons. I really don't mind as I am just very happy and grateful that I got married and can call John my husband and became a “Mrs”.  By the way we have decided that I will change my surname and I will take John's, so I need to get used to that ;-))

There have been quite a few donations to my fundraising appeal since I last wrote, so I would like to take this opportunity to say a very big thank you to everyone who has helped with this. Everybody has been so generous and kind and I can't thank you all enough.

Thank you for reading.  I've included a few more of our wedding photos below.

Wednesday, 14 January 2015

On The Rise Again

Hi everybody.

Unfortunately I have some bad news.  I took blood again last week to measure my tumour marker and it has doubled in the last 5 weeks – it is now 73.  I am absolutely devastated but ready for the fight.  The hospital is arranging for me to have another CT scan to see if there are any visible tumours and I have an appointment with my consultant on 26th January to discuss the scan results and my options for further treatment under the NHS.

Needless to say my brain started working 100 miles per hour and I have come up with a plan.

Just recently I read a book called ‘The Journey’ from Brandon Bays and I was really fascinated by it. She developed a method where you reach your deepest self, discover what your unresolved issues are and find out on an emotional level why you are not letting go of an illness.  A good friend of mine tracked down a practitioner in the UK who does sessions using the techniques from The Journey, so I’ve arranged to see her to see if she can help me.  That is what I am doing this weekend.   I am very excited about it and hoping I can find some answers.

Furthermore, I’ve contacted one of the clinics in Germany that I’ve been in touch with previously to arrange a date for me to go out for treatment.   Thanks to all the generous donations I am able to start treatment at this clinic.  I’ve chosen to go to the Lentz clinic, which offers a unique treatment called Immunepheresis that is only available in Germany.  Immunepheris is an immunotherapy type treatment that helps the body’s own immune system to fight the cancer, so it is non-toxic with no side-effects.  It works by using a dialysis machine to filter something called TNF blockers from your blood.  TNF blockers shield cancer cells from your immune system, so by removing these, it weakens the cancer’s defences, thereby allowing white blood cells to attack the cancer.  The treatment is proven and has got very promising results.   I am trying my best to avoid chemotherapy as I have hardly recovered from the last one – after nearly 8 months of chemotherapy treatment I only had 3 months of stable disease before the cancer started growing again.

On the other hand, the good news is, we have set a date for the big day - our wedding.  It is scheduled in for the 14th March (this year of course).  I am so excited about it and looking forward to becoming a “Mrs”.  It’s going to be a very small wedding with just family and very close friends, but a very special day.  I need to get better by then as that date cannot be changed!  I do not want to change it.

As you can see there’s a lot happening.  I will keep you updated on my progress.

Thank you for your help and generosity.

Monday, 15 December 2014

Enagaged and Stable!

Hello everybody.  A lot of things have been happening since my last update.

One of the main things is that my partner John proposed to me, so we are now engaged!  I must admit I didn’t expect it at all and I was absolutely taken back and surprised.  We’ve been together for about 3 and a half years and getting engaged was my dream.  Well, getting married was my dream, but this is a big step towards it!  I am thrilled that I have on my agenda to organise for us to get married.  We are hoping to plan it for early next year depending on how the organising goes.  Luckily I never wanted a big wedding, so that fits in with not having the means for it!  For me the main thing is that John proposed and that we will be married.  One of my dreams is coming true.

The other big news is that I had my 3 monthly follow up blood test and I am glad to say that my cancer is currently stable.  Following all my most recent treatments, my tumour marker had dropped to 33, in October.  It had risen slightly to 36 a few weeks later but my most latest result was 35 – a drop of one point!  I am very happy about this.  It’s always a nerve-wracking time taking blood for the tumour marker test.  I get very nervous and fearful of the reading.   I don’t think it ever gets easier but I’m trying to learn how to deal with it as calmly as possible.  The doctors also wanted to do a CT scan but I refused as I had a clear scan fairly recently and I am trying my best to avoid further radiation – they only want a CT scan to be able to offer more chemo and I really don’t want that.

Another recent development was a consultation I had with an oncologist who has an interest in alternative methods as well as conventional treatments.  He suggested a few off-label drugs for me to consider.  Off-label drugs are drugs that can have a beneficial in treating medical problems that they were not originally intended for.  One of these was Low Dose Naltrexone.  I’ve been told by a couple of other alternative doctors in the past that this might be beneficial and there seems to be lots of evidence on the internet that it can shrink tumours and help control ovarian cancer.  There are also apparently clinical trials now being conducted with it.  It is something I’ve tried in the past but I thought I would give it another go.    Unfortunately I had to stop it fairly soon as I was getting hallucinations and fears.  I was very disappointed about this as it did sound promising but I tried my best and it is obviously not for me.

Another off-label drug that was recommended to me was metformin.  This drug is normally used for diabetic patients but there are some active studies looking into its use for treating cancer.   It is well known that cancer feeds on sugar, so I can see how a medication that controls levels of sugar in the blood could be a useful aid to fighting cancer.  So, I am in a process of trying to get hold of it.  I’ve been referred to a private clinic that is doing a study on metformin for treating cancer, so this may be an option.

I’m also looking into one other off-label drug that was recommended to me – artesunate.  This is a form of artemisinin - a herb used in Traditional Chinese Medicine - and it is most commonly used to treat malaria.  Again, this has been shown to have beneficial effects against cancer and some clinics abroad already offer infusions of this as part of their treatment programmes.  I’ve identified a private clinic in the UK though that may be able to prescribe this for me.

In the meantime, I am continuing the supplement regime put together by the medical herbalist I saw in October and I’ve got a follow-up appointment with him in January.

So, I have few things on the go that will both keep me busy (researching new treatments) and happy (getting married!).

Thank you for reading and thank you for everyone for their onging support with my fundraising appeal.