The plan starts to take shape

The plan starts to take shape. We speak with the cell therapy clinic and arrange to have the bloods taken in Harley St on the 30th July. We also make contact with a senior oncologist in Southampton Hospital, a manager at Glaxo Smith Kline and arrange for new MRI and CT Scans at the Churchill as well as genetic test and consultation with our current oncologist to discuss treatment.

We have started to ask for help in the form of any information or contacts that anyone of our friends know and to make this the biggest community for triple negative support have purchased the www.triplenegative.co.uk web site.

The feeling that we may be able to really help other people is really helping with the mental fitness side of the 10 point plan.

What’s NOT helping is that our Virgin internet has been down and apparently will be for 3 days – so at this crucial point we are really struggling with no communications

Little bits of life hassle now seem much more strenuous and I am struggling to keep an aire of calm at work and with contacts.

Wimbledon Final

It’s the Wimbledon Final and we settle down in front of the telly with 100s of articles, papers and web links to try and get our thinking into some sort of order so that we can make the changes we need to.

The first as most important thing is to change our thinking. This is hugely helped by a long telephone conversation with an amazing lady, who despite suffering terribly with chemo and several re-occurrences has found the strength to say not to chemo this time and to invest in non-drug therapy with a holistic approach guided by sound science.

She confirmed our feeling that this isn’t about cure but living until a cure is found. It seems strange that with such huge resource and so many dedicated scientists that we are not there now.

We immediately implement the first three points of the plan, physical fitness, mental fitness and complete nutritional change.

22 hours a day to research

Claire went to her close cousins wedding for 3 days with her Mum. This gave me literally 22 hours a day to research, plan, communicate and understand and the difficulties over those days is probably what created this web site. If you are already on day 6, I am so sorry that we didn’t get this to you sooner.

To be able to come to one place and understand Carboplatin, Bevacizumab in Triple Negative Untreated Metastatic Breast Cancer and Radio Frequency Ablation is why we all need to share.

The result of 3 days research and huge amounts of good luck and the kindness of people who help in every way they can and to whom Claire and I are more grateful than could be thought possible, resulted in our first 10 point plan, which is on the website.

It’s about now that we come to the stark realisation that most of what you read and research is totally negative. We need to start thinking in a different way and doing it fast as when Claire comes home she will need to not just know but understand that everything will be alright.

I base the plan on three factors, which most seem to agree, contribute to the huge number of cancers affecting the western world

  1. Toxins in our environment.  (We live in the country so hope this may be a little negated)
  2. Food processing. (We have removed anything non organic, pre-processed and not traceable to source. All foods are now driven by known anti carcinogens)
  3. Processed sugar (This is the biggest contribution to cancer growth and we have completely removed this. Which is not as easy as it seems)

We started to move into the light

We started to move into the light. I had a conference to attend, which I left after about 30 minutes as my mind was a blur. This could not be happening and my thoughts were a complete jumble, where to start?

First thing was to decide if we should tell anyone. Our theory on this, was, that is someone asked they cared and if they cared we would not pretend to them. In this way surprisingly on day 2 most of our friends were told – just goes to show how many people think of you all the time.

The day I had always dreaded

The day I had always dreaded. Claire called me up at work and tried to sound chirpy, but failed miserably. “I’ve got some good news and some bad news” She said.

The good news is that I don’t have to have any more Chemo “Whooo hoooo”. Then the bad news came. I don’t think I really heard anymore after that. Just a smashing in my heart, that shared the space with odd words, like lungs, tumours, untreatable and life expectancy.

Claire asked if I could talk to Dr Miranda Payne. I called and she kindly returned my call, with a lot more of the same, just more detailed. Again the 2 year life expectancy raised its head (how many times have I read that since about almost every cancer). The end of the call left me with no hope at all and is perhaps an over management of expectation because the one thing we have left is hope and unless there really is NO HOPE then it’s cruel to crush so fully.

Not sure how I drove home, alternately screaming at God to not take my Baby and crying for myself utterly selfishly knowing that I simply can’t live without her.

That evening was tears, hugs and exhaustion – It was the darkest time.

Our Story So Far

Our journey so far. My wife (Claire) was diagnosed in Sept 2010 with breast cancer in her right breast- the tumour was 15mm. She had a wide local excision on the 1st October to remove the tumour and on diagnosis it was discovered to be triple negative. This was then  followed by another operation as the surgeon had identified that there was no clear margin on the 30th October and declared a success. Treatment then commenced in the form of 6 x FEC chemotherapy, then 4 weeks of radiotherapy, finishing in May 2011.

In October 2011 my wife had another mammogram and ultrasound and was told that it was totally clear. “If it wasn’t there before the chemo therapy then it certainly isn’t going to be there now”. We have serious doubts about the competency of this Dr and it serves as the first warning to all triple negative fighters

From November 2010 until January 2012, Claire had an “inflamed stitch” as we were advised. This “stitch refused to heal and eventually became pusy. So this was surgically removed and on analysis this was found to be cancerous. Claire was then referred for another CT and MRI scan on 24th February 2012, which found the breast cancer had reoccurred in the same breast, this time two tumours 45mm and 5mm. It was also advised that it hadn’t spread to any other part of the body.

She had a full mastectomy in February 2012 and has since been prescribed 100mg of Docetaxel every three weeks for 6 sessions up until 13th June.

During this treatment period she suffered badly with a chest infection and convinced the oncologist to book a CT scan on her chest. This was done on the 2nd July 2012.The following day at her Oncology appointment the decision was made to stop chemotherapy due to numbness in fingers and toes having completed 4 cycles.

Then she was told that her CT scan showed 5 pulmonary nodules in both lungs combined, ranging from 3mm to 6mm, which have grown during the chemo since the scan of 24/02/2012. They have advised that it is secondary breast cancer.

At this point we do not know what treatment they want to give and the only information is that it is incurable. My wife was 35 at time of the first diagnosis and has just turned 37 years old. They have advised a two years life expectancy.