December 2014

I have been overwhelmed by the success and response to the Breathless Breastless Project. Since June we have put on four exhibitions and attracted over 500+ visitors. Social media followers continue to rise slowly and feedback has been nothing but supportive for our quest to share the real journeys of a breast cancer diagnosis. Our last exhibition finished in September but I continue to follow up leads for potential events for 2015. I have been liaising with a local charity who expressed an interest in hosting our exhibition at one of the Scottish museums next spring. I am very excited about this opportunity. Find out about future events on the website www.breathlessbreastlessproject.org

I was disturbed by the news last night of NHS Grampians failings at Aberdeen Royal Infirmary and Woodend hospital. BBC said “Three reports into health care in the north-east of Scotland have highlighted "extremely serious" issues and "make stark reading" for NHS Grampian.” The main key points can be read here http://www.bbc.co.uk/news/uk-scotland-north-east-orkney-shetland-30293512

I did actually file a letter of complaint following my own care raising various points about the departments and people who dealt with my case. I was rather shocked at my annual check up to be greeted by one of the nurses I had complained about! I have also never seen my own consultant at my two annual check-ups and have been checked over by a junior doctor. The annual check-up consists of a few questions, raising my arms above my head and a feel of my breast as I lay on my back. My original tumour could never be felt when I lay on my back and could not be seen by raising my arm. Lobular breast cancer is notorious for not showing up on mammograms, I was told my mammogram “showed no change” and that I had dense breast tissue. Not the reassurance that one would like to receive!

Following changes in bowel habits and under rib pain at the start of the year I consulted my GP who made a referral to hospital. I saw the doctor within a couple of weeks and she made an “Urgent” referral for colonoscopy and endoscopy, finally someone interested to look at why I may also have been anaemic. I chased up the appointment twice, being told by my GP that there was an acute shortage of consultants and serious backlogs with patients waiting for surgery etc. He spoke about elderly patients being sent to Glasgow, three hours away, for hip replacements! The procedures were finally carried out over six months later. I am happy to say that nothing untoward was found apart from a hiatus hernia and was told that I should be referred back to the hospital doctor for follow up. Of course I have heard nothing and I doubt there will ever be a follow up. The doctor did say that they took bowel changes seriously and would monitor me. We all clearly need to be proactive in our own care but unfortunately I think this gets us labelled as anything from aggressive & argumentative to paranoid and a hypochondriac!

 I have been trying to get my fitness back up although my hip and shoulder are telling me they don’t like it! The estuary is a very inviting place for walks and runs especially on crisp, sunny, winter mornings. The views are spectacular and peaceful, you can really get back to nature out there on your own. Lungs full of fresh sea air, wind and sun on skin, legs sinking into soft sand, seals calling from the shoreline. Quite idyllic.

I have taken on a role as a Team B Aware volunteer for Breast Cancer Care Scotland. I am trained and available to go out into the community to give a short 15 mins presentation on breast awareness and how to be breast aware. Do you know what changes to look for in your breasts and how and when to check? Do you regularly check your breasts? Early detection is key to survival and we hope as a team to reach as many people as possible in Scotland, from all walks of life and over all age groups. You can find out more about Team B Aware and book a presentation here http://www.breastcancercare.org.uk/b-aware

Christmas is almost upon us and I look back over 2014 grateful for all that I have done and all that I have achieved. I have met some fantastic people through the Project, inspirational artists and like-minded cancer survivors who have enabled each other to express themselves in a way that has helped them to move forward and to let go of some of their fears regaining an optimistic future. The Project has given family and friends a deeper understanding of what a cancer diagnosis means and has shown the impact a diagnosis has on lives, both immediately and long term. Sharing and communication with one another is key to healing.

My thanks go to everyone who has supported The Breathless Breastless Project in 2014. To all the people who have given generously of their time and to those who chose to support us financially. We have exciting plans for 2015, if you know of a venue that would like to host the exhibition, if you would like to take part in any way or wish to sponsor us please do get in touch!

Meantime, very merry Christmas wishes and happiness & good health for the New Year.

 

Two Years Since Diagnosis

One For Sorrow. Lou Loakes

Around 100 people turned out for the opening night of Breathless Breastless Project. It was hard to believe that an idea in my head was now hanging on the walls of a council run creative hub in Aberdeen’s city centre. With a glass of bubbly in hand I chatted to the Lord Provost of the city, Lady Provost of the Shire and many other invited guests. The Press & Journal and Original FM wanted interviews. SHMU FM invited us to do a live broadcast on the culture show at the end of the week. I stepped out of my comfort zone on opening night and gave a speech to the audience as we all stood around Beate’s Living Tree Of Life, Hannah’s portrait on the wall behind us, a stark reminder of the power that this disease still has to take 1000 lives each month in the UK.

Feedback from the 350+ visitors who came to see the graphic images and learn of the journeys of breast cancer survivors was quite overwhelming. “Inspirational, powerful, beautiful, poignant, breath-taking creativity, magnificent, evoking, emotive….”

Stark reality. Jane Birrel MacKenzie

My life has changed considerably in the two years since I was diagnosed. Two years ago yesterday, I sat in a white consulting room on a blue plastic chair waiting. I remember it was sunny, I pushed my fingers through the vertical blinds to let in the sun, I watched the hands on the clock tick, I saw the box of tissues on the desk. Moments later came the news that would change my body and my life.

The hot needle stabs that occasionally pierce my chest are a reminder of the surgery and the loss of my breast. These are brought on by exercise such as swimming and the rowing machine. I have given up with the rowing but am keen to develop the swimming. On the anniversary yesterday I tried out the new Aquatics Centre in Aberdeen for the first time. Fabulous facilities and a wonderful 50m lane pool where I managed to swim 1km.

Tamoxifen side effects remain minimal and it’s hard to differentiate from what is “normal” as one gets into their 50’s! I sometimes feel as though I lose big chunks of memory, not just words or detail, but chunks of time unsure of what I did or with whom. Most mornings my eyes are very cloudy and it takes several minutes for them to clear fully. The heat has caused swollen legs and I am experiencing a low grade temperature for about half the month which the doctor says is the Tamoxifen. (He didn’t actually take my temperature or examine me in any way). Menstruation continues regularly, heavy on day one but then as “normal”. I’m getting around two to three “fatigue” days a month, the temperature doesn’t seem to help this. I just manage my time and try not to cram too much into my day or week, combining good diet and exercise, work, play and relaxation where possible.

Since the passing of two years, I have learnt who and what are important to me. I have learnt to be calmer, to expect less, to demand less, to live in the moment, to do the things that make me happy and to avoid or minimise the things that cause me stress. There is no time like the present and there is no present like time. Time is the greatest gift any of us will ever have.

Some relationships have deepened and drawn closer, some have diminished and no longer hold much value. They were what they were for a period of time only. The ones that remain are to be cherished and enjoyed and time shared filled with moments of living, giving and enjoying. My experience has enabled me to help others in similar situations, able to offer a friend some comfort following her own mastectomy and reconstruction and support to my cousin during her diagnosis and subsequent lumpectomy. And then there are new friends. New people brought into my life along the way. My Project artists, the team. People who have uplifted, inspired and believed in me. People who made my dreams possible.

We are very excited to be taking the exhibition down to Bradford to exhibit during the Saltaire Festival in September as well as a second Aberdeen exhibition at The Arts Centre & Theatre. We have been invited to take a mini exhibition and presentation to one of the local businesses in Dyce next week. I am also to take part in a training program as a Team B Aware Ambassador for Breast Cancer Care in September. The new scheme aims to target disadvantaged groups and raise awareness in being “Breast Aware” and to dispel the myths and fear surrounding breast cancer. Scotland has one of the highest mortality rates in Europe for breast cancer and this they say is down to late diagnosis. My role will to be to talk to groups and give the facts.

Life is altogether a slower more relaxed pace, less physically demanding and far less stressful now I am out of the big old house. I can honestly say I have not missed it at all. The move was a smooth transition from country to coast. Every day feels like a holiday looking from the windows to see the tide go out and the seabirds come in. Herons, Oyster catchers, curlews, gulls right outside the lounge window, wonderful walks directly from the front door and empty beaches within a short distance. Life on the estuary is just as it should be.

 

The Breathless Breastless exhibition can be viewed on line : http://www.breathlessbreastlessproject.org/

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!

Project and Progress

Two of my contacts found themselves in hospital on Valentines day, undergoing tests and desperate for pain relief. Both of them have advanced breast cancer metastases, a stark reminder that there is still no cure for this terrible disease once in the advanced stages.

Generally I keep a lid on fear, but occasionally it manages to push its way up and interfere with my thoughts. It probably serves as a reminder that it is all about now and living life to the full.

I have completed my list of top 100 life experiences (see the page tabs at the top). I have done some amazing things and had some incredible experiences. I will add to these as I work through my bucket list!

This years big achievement for me will be the Breathless Breastless Project. The art exhibition goes from strength to strength with lots of interest and support.  Take a look at the Facebook Page, link below. We have secured exhibition space for June in Aberdeen City centre. Art works, including installations, photography, paintings and audio are being created by a talented team. Breast cancer survivors are experiencing a cathartic journey, over coming fears and helping to improve body image, self-esteem and healing. We have secured some funding to help us with promotion and we hope to publish a book, set up a website and tour the exhibition.

Please continue to support and share our project.

https://www.facebook.com/pages/Breathless-Breastless-Project/164445467028874?fref=ts

My Scans & Biopsies 2012

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!