Update

Since setting up my Just Giving page I have been so touched and amazed by the huge amount of love and support that we have received. I can't begin to express how much this means to myself, Peter, Will, Emily and George. I have been so thankful for not only your extremely generous donations but also your inspiring messages.

It's amazing how much can happen and how your life can change in such a short space of time. A lot has certainly happened in the Wren household recently!

Four days before Christmas I had an appointment with my oncologist to find out whether I was responding to the chemotherapy or not. We knew as soon as we walked into his office that it wasn't good news, after a while you get to learn to read their facial expressions! It turned out that not only was the chemo not working but I had all the symptoms of spinal cord compression and was in danger of becoming paralysed unless immediate action was taken so I was admitted to the oncology ward for an MRI scan, urgent radiotherapy and possibly surgery. So Peter had to return home and explain to the children why mum hadn't returned home with him and that it was unlikely that I would be home in time for Christmas. Some good news followed however as the scan showed that I didn't have spinal cord compression after all, I had prolapsed discs at the top and base of my spine so I could go home with a new supply of painkillers.
The next day I received a number of phone calls from the hospital as they suspected that I had cancerous cells in my spinal fluid so over the following few days I had a lumber puncture and another MRI scan which required an overnight stay in hospital. Thankfully the scans showed no evidence of cells in my spinal fluid but we still needed to decide what my next line of treatment was going to be.
We knew the treatment would be some form of chemotherapy, we knew there was no guarantee that it would work, and we knew that it would come with a long list of horrid side effects. All in all, it wasn't really very appealing!

One of the nurses at the hospital phoned me yesterday and asked how I was and all I could say was "I don't know!" She said she wasn't at all surprised after all I had been through and she likened it to post traumatic stress disorder. Since my diagnosis we have had many, many low points and become used to picking ourselves up after yet more bad news however the last 3 weeks has far exceeded anything we have experienced on our 'journey' and made us determined to do as much as we can to avoid having to go through it again.

We have decided that the next phase of our journey will take place in Germany as we strongly believe that the treatment offered there will give me the best chance of being well. I will have Dendritic Cell treatment in a little town called Duderstadt, along with radiotherapy and possibly a low dose chemotherapy in the UK.

So we have booked our flights for January 13th!! I will have blood collections and consultations on January 14th and 15th, then my first vaccination will be on 22nd January. Fingers crossed it will work but we won't really know for another four months or so. I'll keep you posted, in the meantime thank you so so much for your continued support!

Xxxxx






Emma's journey to Germany

Nine years ago when my children were just four, two and a half, and eleven months old, I was first diagnosed with breast cancer. I had surgery, six cycles of chemotherapy, three weeks of daily radiotherapy, and eventually reconstructive surgery. Then it was over. Or so we thought. 

Six years later I discovered that I had the BRCA 1 gene which increased my likelihood of getting ovarian and breast cancer by over 65%. It turned out that my first diagnosis wasn't due to bad luck, I was genetically pre-disposed to get it and there was a significant chance of it re-occurring. The prospect of going through it all over again terrified me so I made the decision to have preventative surgery. 

Unfortunately luck wasn't on my side as despite doing all I could to prevent it, I was diagnosed with secondary cancer in February 2013. There is no cure for secondary cancer, you basically embark upon a journey of continuous treatments and pray that you can make each one last as long as possible. Despite having a hormone positive cancer I didn't respond well to any of the hormone treatments that my oncologist thought would work, so in February 2014 I underwent my second course of chemotherapy. Thankfully I responded really well to it. By the end of a very difficult 4 months I was stable, which was the best result my oncologist said I could hope for. Within weeks of finishing however I was back to square one as it had progressed again. 

With very limited treatment options left I was lucky enough to be selected to take part in a drugs trial for a drug which specifically targets the BRCA gene. I had appointments with my oncologist every three weeks, MRI and CT scans every six weeks, and endless injections and blood tests. I was stable for ten months until a scan in September showed further progression, so my third course of chemotherapy followed.

That's where I am at the moment. So far I have had three out of a potential six or eight cycles and it's hard going. When this course finishes my next treatment option is another form of chemotherapy. Then another. Then another. In a nutshell the only treatments that the NHS can offer me now are chemotherapy based. Whilst I am thankful that I still have options available they are very limited, they only provide a short term 'fix' and the side effects are pretty horrendous. It's extremely hard to maintain a normal life and keep a stable routine going for the kids when you feel grotty all of the time. I always said that I would do anything to keep me on this planet and with my children for as long as possible and I'm convinced there are more options out there.

My research into 'alternative' treatments has led me to Dendritic Cell Vaccine Therapy in Duderstadt Germany which is a form of immunotherapy. It involves the use of a personalised vaccine which retrains the immune system to recognise and eliminate cancer cells. It's not a miracle cure, however it has a good chance of success and the side effects are much more manageable than chemotherapy so it would offer me a significantly better quality of life. Unfortunately it isn't available in the UK, it cannot be funded by the NHS and it is very costly. Each treatment (vaccine) costs approximately £4500 and the usual protocol is to have a vaccine each month for the first four months followed by two 3 monthly vaccines. If successful I would then need a vaccine 'top up' every 6 months. The clinic also offers treatments such as hyperbaric oxygen therapy and hypothermia and I would like to access other complementary therapies which could be have huge benefits to me. I hope to start treatment in March.

This is where I need to ask for your help. I'm already astounded by the support that I have had from my lovely husband, children, family and friends. Knowing that I have them with me has made what is a pretty horrendous situation manageable. If you would like to help me on my journey to Germany I would be enormously grateful for any contribution, it would mean the world to myself, Peter, Will, Milly and George.

Thank you Xxxxx

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