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!

One year on.

I shook uncontrollably for several minutes, chest tight, breathing rapid and shallow. I could be dead in a split second. I sat looking face to face with a pride of seven lions ripping their way through a wart hog. One false move and we could all be the main course. I ddin’t shake uncontrollably when I was told I had invasive cancer. Does that mean that lions are scary and cancer isn’t? Not exactly. But it did mean that if the lions were going to get me I had no time to do anything about it, no time to do all the things on my bucket list, no time to plan. Two seconds and it would all be over. I can honestly say, that although It was terribly thrilling, I had never been so physically frightened as when I sat in front of the lions! I have been lucky enough to experience several “trips of a lifetime” over previous years but this one was extra special for the four of us, being the first time we had travelled all together, under our own steam to a long haul destination, rather than on a package. We had lots to celebrate with special birthdays and being a year on since my cancer journey began. The trip exceeded all expectations. We spent quality time together sharing amazing experiences and memorable moments across the whole of the Cape, West to East. This was one thing on my bucket list, that for a long time I had wished to fulfil.  Watching my beautiful daughters step out of the safari truck onto the wild savannah for sundowners as the sun was setting will remain with me always. I was last in South Africa some 30 years ago when I was not much older than my daughters, it was very special to return with my girls.

The two week holiday was a complete escape from all things cancer. No news articles, no posters, no rattling buckets or supermarket campaigns, no one asking about it, no one telling me about it. I could almost pretend it hadn’t happened and that it didn’t exist. On my return back to everyday living, I have avoided writing the blog for a while longer but eventually I am faced with cancer related issues, both myself and in the wider world and it helps me to write things down and to get things out of my head. I have friends who are dealing with their own cancer related journeys and it’s only right that I should support and care yet that can at times bring a heaviness to my heart. I have seen the impact this week on my daughter, when one of her friends lost his uncle to cancer, leaving behind an 18 year old daughter. I sometimes forget to be aware of how the girls are affected by what’s going on around them and that events may stir up emotion and fears in them too.

 A letter arrived from the genetics department at hospital. It was a comprehensive review of our meeting detailing all that we talked about and providing information about what happens going forward and the implications of genetic testing. As it stands at present based on family history, my daughters face a moderate risk of developing breast cancer in the future. Within current guidelines they will be entitled to breast screening from around 35 years of age which will include MRI as well as mammogram. It is likely that guidelines and treatments will change between now and then, some 15 years into the future! I myself, will be having genetic testing through a research study which will look for BRCA1 & 2 and the sample will also be used to try to identify other genetic mutations. If I am carrying the BRCA1 or 2 it puts me at significant risk of further breast cancer and would also involve the girls making a decision as to whether they have genetic testing themselves. They would have a 50% chance of carrying the gene if I were a carrier. If there is no mutation identified we remain at moderate risk. Tuesday marks one year on since my diagnosis, I shall be back at the hospital have bloods done for the genetic testing. I was due my annual mammogram in June but as yet, now into August, I have had no appointment. Another NHS Grampian blunder, I am no longer surprised just disillusioned. I phoned the breast care nurses who confirmed I should indeed have had the mammogram in June and she had no idea why I and been missed. An appointment will be sent out.

Since taking the mefenamic acid I’ve had two periods which have been somewhat easier to manage but it’s difficult judging when to take the drugs as it should be the day before menstruation. With a cycle that varies from 30 -35 days that’s no easy to guess and I spent four days taking the drugs last month in the previous days! I am still on the twice daily iron, soon to drop to once a day for another month. I don’t seem to have knocked the fatigue completely on the head yet, having had two days last week when I was back to daytime sleeps and feeling a bit rough! Although I did have the excuse of long haul flights! Still waiting for the results from the gynaecology endometrium biopsy some six weeks ago and a follow up as to whether to stick with the mefenamic acid or try something else. Nothing seems to get done in a hurry! I’m told the genetic testing can take months, and I think they mean 6 – 12 months!

 Soon to be fifty, I have decided to draw up a list of fifty things to do over the coming year! Some simple, like watching the moon and the sun rise with a beach picnic, meeting up with old friends, some more time consuming and costly, hiring a tartan camper van for a few days away and a trip on the Loch Lomond sea plane! I have 10 things on the list so far, message me with any bright ideas! I shall be kick starting the events with a week on a Tuscan vineyard in October including a visit to the Sienna Wine School! Cheers! x

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&