Welcome to this new home for my blog. I have definitely had a bit of an upgrade with a little help from some amazing friends who have whipped this site into being in almost no time. This is a whole new territory for me. Fundraising. For me! It doesn’t feel right. As you will have read all over this site we are raising funds for me to get Dendritic Cell Therapy (and some complementary treatmtents) in Germany. Our friends have been wonderful, rallying around, offering to help and cooking meals. Many have also asked if they could work directly to raise funds to help me to undertake this and future treatments. It is these offers of help that have encouraged us to set up the site.
On line there is a large community of advanced cancer patients, I call them the Fighters. Finding themselves in my situation they have done exactly what I have done. Listened to what their oncologist has to offer in the first instance. They have then gone on line and joined networks to seek out stories of survival. They have read books, papers, joined networks and investigated each and every potential treatment available. They have learned about promising new drug therapies and trials that may be eligible for. We learn from each other. Share ideas. Get the latest news about promising treatments. As this community grows they are becoming more vocal. This quiet revolution is possible because of the internet. The world is a smaller place. As people experience amazing responses they can share this and often do on you tube, via testimonials and like me, their own blogs. I am aware that there is a fundamental bias in place – you will of course hear more about stories of survivorship as they are still around to be heard. Those not so fortunate are clearly not represented. Even so, among these stories there are too many hopeful and credible strategies for survival to ignore.
I will share some of what I have learnt here and my views on them. For now I will focus on the immediate treatment I am aiming to have in Germany – and for which the fundraising push which started yesterday is all about. As I write nearly £8000 has already been raised in nearly 2 days – which is completely overwhelming. My fingers are itching to keep the blog up to date with progress and news and views I hope will change people’s perception not only of cancer, but of the options that exist, the politics of treatment and a little bit about the joy of life. With occasional moments of sadness.
My beautiful Aunt, who died of Ovarian Cancer last year had a pact with her husband – they allowed themselves only 10 minutes of sadness a day. I think about her all the time. We were both diagnosed within months of each other around 2010 and we had chemotherapy treatment within 3 days of each other for a few months and spent hours on the phone sharing blood counts, notes, thoughts and fears. She fought so hard and despite being told she would not likely last a year she lasted almost 5. Smiling til the very end and always so dignified and calm. When I found out it was in my liver. That evening I had the ultrasound in January. I remember going into a sort of mental fug – I simply could not absorb what I had been told.
I think maybe this was what shock feels like. And the person I wanted to call right there was her. But she was not there. It is funny how when someone dies there is such a lag time to absorbing their absence. Unless you live with them when their loss is felt daily, coming to terms with absence is so hard. Many times I think about calling her or wonder what her opinion would be on something. I have always believed when you die you simply go back to the earth, but recently I have thought about the people in my life and those loved ones of friends who have died and feel some sense of camaraderie in a very strange sort of way. Not that I intend to join them any time soon but the fact they are there – wherever there is, is surprisingly a comfort.
I am meant to be talking about Dendritic Cell Therapy in Germany! I came across this in my research first in a search of You Tube. Try it out – type in Cancer Survivors Testimonials and you will be amazed at what comes up. One of these stories (which I annoyingly can’t find but will carry on looking) featured a woman with advanced breast cancer who was running out of options and heard about dendritic cell therapy. There are clinics in Mexico and her friends got together (a bit like my amazing friends) and launched a fundraiser for her. She responded to the treatment amazingly and the disease was pushed right back and the interview with her is 2 years on and she looks healthy and is still in remission despite a very rocky treatment and relapse history prior to the treatment.
This made me investigate it more and while I cannot claim to be an expert I have learned an awful lot about the potential of this immunotherapy treatment. I have also found some disturbing information about why so many treatments take so long to see the light of day. The therapy I will get is called Dendritic Cell Therapy – here is what it is:
Dendritic cell therapy is a therapy which involves the use of a personalised vaccine to retrain the immune system to recognise cancer cells as a threat to the body.
Dendritic cells are found in all blood vessels. These cells identify foreign substances, such as cancer cells in the body, process them and then help jump start the immune response to destroy them by bringing them to the attention of the T cells. Often the dendritic cells are not very effective with this process.
With Dendritic Cell Therapy, the patient's own dendritic cells are treated and modified to be able to specifically train the T cells to attack and kill all cancer cells that have the same foreign substance on their surface.
This is a treatment which is low toxicity and trials have shown it to be very safe.
In the UK at present there is a ‘ladder’ of treatments for people with advanced breast cancer. For my type of cancer these are mainly chemotherapies or hormone therapies. In practice oncologists will work their way through these treatments until they start running out of options. Once I have a treatment I cannot have it again and while a treatment may work for a while the expectation is that it will, at some point, become resistant and I will have to change treatments (assuming I have options left). I can just sit and work my way through the standard treatments currently available to advanced breast cancer patients in the UK until I am eligible for a trial but, but my cancer may be too advanced by then to make much difference. So from where I am I have no choice but to get out there and see what is currently available with good potential to extend my life and improve the quality of it.
I was very nervous about this to start with. Simply the idea of going to Germany and paying for something that was not registered and not formally recognised by the established medical profession in the UK made me feel very off grid. Rather reckless and desperate. I was embarrassed to talk to people about it as it felt as if I might be moving into the realms of hope not sense. BUT I have read many papers on this therapy, I have spoken to one of the UKs top oncologist, a proponent of this method (you will hear more about him!) and he has been to the clinic I will go to and used to give this therapy in the UK until the European Clinical Trial Directive which stifled this and many other promising therapies making trials simply too expensive (you will hear more about this too!), I have watched testimonials and presentations on You Tube and I have spoken to people who have been to have this treatment. And my conclusion is that I would be mad NOT to have this treatment.
This is done alongside other treatments so I will still start on hormone treatment soon after chemo ends and I will continue with my other supplements and some complementary approaches to keep my immune system strong. I am booked to go to a clinic in Gottingen near Hamburg in Germany on 8th June. My first trip will be about 12 days when they make the vaccine and then I return 4 more times, every 3-4 weeks for 3 days for the vaccine.
Nine Chemotherapies – Three to Go…..
I had my 9th chemotherapy today and met my oncologist beforehand. My bloods were great – with my liver function tests all in normal range (except one pesky one which I think is aggravated by the chemo anyway) and so I will not have a scan until after the 12th chemo – only 3 away. He was supportive of my going to Germany (and in fact referred me to the Professor who specialises in Immunotherapy). So, with the sun shining also and amazing things happening on the fundraising page – today is a good day!
The hormone treatment I will have (Letrozole) after the chemo is only prescribed to post menopausal women – so my next physical challenge is going to be being put into a chemically induced menopause almost overnight. This involves an injection monthly. If I tolerate this OK I will then have my ovaries removed. Rupert is organising some carefully timed work trips over this period – as far away as he can :).
Thank you !
As I sign off tonight – I do so with my heart bursting at the generosity and kindness of my many friends, family and neighbours and to the many many people who do not even know me who have been sending donations! Thank you Thank you Thank you
Finally Watch out as my children ROAR ….
A couple of nights ago Ellie, who has been the engine behind this website (she is a major force in the anti fracking movement in Sussex (see Frack Free Sussex) as well as being an amazing composer and song writer http://www.elliewyattstrings.co.uk/) marshaled my kids to produce a version of Katy Perry’s ROAR – watch this space! You will notice Ella (18) and Ned (11) getting right into it, Tom (16) enduring it valiantly. William (14) found the whole thing very uncomfortable but then I am not sure I blame him – they are all singing with pants on their heads. He is a 14 year old boy and he knows this is going to be shared far and wide. I can’t wait to see the finished product and to see if we managed to make it look as they were all having an equally good time. Thank you ELLIE and thank you to her husband Andy who has helped her and took all the photos and will be helping to put it all together. You are an amazing couple.