May 2014

Things have been quiet with my blog as the art project has taken over and has been keeping me busy almost full time! Just five weeks until the exhibition opens in Aberdeen on 12^th June. Things have really taken shape and there is now a website for the Project, check it out and also like and share our Facebook and Twitter pages!

http://www.breathlessbreastlessproject.org/

 I continue to learn from this whole experience. I built the website myself which was at times challenging and I was grateful for the online support team to guide me through the issues I found myself faced with. I am very grateful to have secured some sponsorship for the project from Interwell, The Fine Food Company, family and friends and Aberdeen City Council. This means we have been able to pay for domains, build a website, advertise the exhibition and print flyers and posters as well as a creating a smart stand to display at our exhibition venues.

Cancer Care.org and Macmillan have shown interest in the project and have provided us with posters and support material, Knitted Knockers – a group of volunteer knitters have provided us with a pair of wonderful bright knitted knockers, a colourful alternative to prosthesis or pads. Maggies Centre are displaying our posters and promoting the Project online for us and will be sending a support volunteer to our event.

I have been out and about networking and contacting groups / organisations via e mail and Facebook to promote the Project. I found myself at my first “Lunch & Learn – Meet The Press” a few weeks ago, which was a valuable exercise learning how and when to do press releases and provided the opportunity to meet the media from our local area.

Away from the project, life throws up it’s challenges from time to time. We had a worrying time for a short period when Paul found a lump under his arm and the doctor referred him to the hospital, who in turn wanted a biopsy and removal of the lump under general anaesthetic. March 6^th was the 18 month anniversary of my mastectomy and I found myself sat at Paul’s bedside and watching him be taken down to theatre. I am very happy to say that after a stressful two week wait we received the news that the biopsy was benign and nothing to worry about. That’s was of course a massive relief and serves as another wakeup call as to how delicate this life can at times be when things hang in the balance.

It was devastating news to hear that Hannah, who was admitted to hospital on 10^th February and told that her cancer had spread, died yesterday morning from advanced breast cancer. Hannah was first diagnosed just under two years ago and had a mastectomy and chemotherapy and believed that her cancer had gone. In February she found out the breast cancer was in her liver and her lungs, inoperable and incurable. Hannah was 36 years old. The Breathless Breastless Project is proud to be exhibiting two portraits of Hannah, who wished to share her journey with the world.

Recent good news from the genetics clinic, that I do not carry the BRCA1 or 2 mutation. This has a big impact on future breast care for my daughters. It’s a huge relief that they do not have to make decisions about their own genetic testing or the consequences of a positive result. They are still said to be at moderate risk of breast cancer in the future and I myself am at moderate risk of further recurrences due to family history. As such the girls will be able to obtain screening from around 35-40 rather than having to wait for the national screening program at 50. We will all remain vigilant and do our monthly breast checks.

Coppafeel is a fabulous charity set up by Kris, who was diagnosed with stage 4 breast cancer at 23. Kris has been living with the disease for five years. She continues to spend time encouraging young people to be breast aware, through events at Universities and festivals. Find out more on her website, sign up for a monthly reminder to check your breasts - http://coppafeel.org/kris-story/

 

The Breathless Breastless Project is hoping to take the exhibition to other UK venues next year, if you know a venue near you that may be interested in the exhibition, please let us know!

 

Must close for now, I have the small issue of having to finish packing boxes for a house move in a weeks time!

A New Year 2014

Very best wishes to everyone for the coming year. It’s difficult to say “Happy New Year” to those friends facing tough times when it will be far from a happy year for them, but none the less, best wishes are sent to those who need them most and I very much hope that in between the rough tough bits are fun and happy times to be enjoyed.

On Christmas day I found out that an acquaintance of days past had a mastectomy in November for grade three invasive breast cancer, another friend had BRCA genetic testing results back recently to find she carries the faulty gene and an old school friend is cherishing every day that she has as she lives with stage four breast cancer. It is all around us and some of us are the lucky ones. For that I am very grateful.

The art project has taken off and is in full swing to my amazement! I have 12 talented artists who are starting to create some great images and work. I have sat for two life drawing sessions and had three photo shoots. The life drawing was quite an experience! Naked in a small village hall in Aberdeenshire on a winters morning, in front of 10 artists, nine ladies, one man. I had moral support of my friend Dee who I met through the CLAN cancer centre. Sat on white sheets and cushions, fan heaters blowing over my skin and the room in soft focus without my glasses on, it was quite a meditative experience sitting so very still listening to the scratching of pencil and pastel on paper. Dee had declined to sit naked but having watched me she then declared “If she can do it, so can I”. Major boost for body image and self esteem after her double mastectomy, which is what the project is about.

2014 will see the results of my genetic testing, the wait for those is still some months away. At the end of January I begin my online study with The University of Bath learning about genetics in cancer. This is just a six week module but one which I hope will help me understand how and why some people develop cancers and what goes wrong within the body. After my diagnosis I looked for something to blame for the cancer and largely blamed myself for having lived quite a stressful life for a number of years. The genetics department put my mind at rest when I clearly had led a healthy life style, with regular fitness, meat free for years, given birth at the right age, breast fed for six months on both occasions, not obese, non-smoker etc. With a family history through my father’s side, of breast and prostate cancers, the chances of me or my daughters developing breast cancer is “moderate risk”. The genetic testing will confirm if that remains the same going forward (negative BRCA mutation) or if it increases to high risk (positive BRCA mutation). A high risk outcome will mean that choices have to be made for both me and my daughters and I hope that some further understanding of genetics through the online learning would help if we were to face that road.

I am generally feeling fitter and well these days, although the tiredness can still be an issue at times. I suffered two bouts of fatigue in December, quite a bad one, unfortunately over Hogmanay which saw me taking to my bed just after 11pm despite a desperate attempt to stay awake! These bouts usually only last two days and tend to come about 5 days after my period, which have become irregular between 3 – 6 weeks. It is much more than tiredness, it is a feeling of having to drag yourself about to do anything, heavy limbs, like the tin man, a feeling of muscles not responding, clumsy and aching, fuzzy head. The only solution is to rest. I thought some gentle exercise would help boost my energy levels and I took myself off for a swim and a sauna during the last bout and I sat in the sauna almost in tears wondering how I was going to get dressed and drive home. I arranged to have my bloods checked just before Christmas to sure my iron levels were still ok after the anaemia. I was told by the receptionist that the Doctor was happy, no indication as to levels! Around 25% of women on Tamoxifen suffer fatigue so I consider this to be a normal side effect of the drug and one that I have to manage myself going forward.

It’s now 16 months since my surgery in 2012, and with the changing of the year it seems quite a big step forward that I no longer “had cancer last year”. I enter the New Year with mixed feelings. 2013 was such a good year for us all after the trials of 2012. We celebrated an 18^th, 50^th and 60^th birthdays and a daughter passing her driving test. We had a fabulous holiday to South Africa and to Tuscany, a great trip to London and the Royal Opera House, caught up with lots of old friends, some great weekends away and enjoyed a trip to France. It was a very special year. It will be a challenge to better the year but it is my intention to at least try!

BRCA1 & 2 Risks & Choices

Interesting reading. Why Angelina Jolie had a double mastectomy.

These are the decisions facing young women who carry the BRCA1 or 2 genes.

Given that we now know there is some history in my family of breast cancer and prostate cancer, I shall be attending the genetics clinic myself over the coming months to determine if I carry this gene. The results of this, then of course, will have an impact on my daughters. If I have the gene they have a 50% chance of also carrying it. What is encouraging is that much research is being done into preventative treatments and in 15 years time when it may matter to my own girls, there may be better options that deciding to undergo drastic surgery.

http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=2&