Run for your Life!

I have three New Year’s resolutions: to write more (anything - letters, blog, stories, poems etc), to run the Edinburgh half marathon again in May (marking almost five years post diagnosis and five years since I ran a personal best) and thirdly, to learn some Italian!

I have started all three, it remains to be seen how much I actually achieve as I move through the weeks and months ahead!

I was saddened (and probably disturbed?) by the recent Facebook postings of Red Hearts to somehow raise awareness for breast cancer? I would like the opportunity to sit down and chat to the person who thought up this incredulous idea! How is a silent heart going to make a difference to anyone? In order to raise any kind of awareness we need to talk about cancer, shout about it, understand it, take it seriously, but not let it overtake us. We do NOT need to fight it or battle with it. We live with it, alongside it and beyond it. I do not need to bang on about wars, about winners and losers, I’ve said it many times before. If all the Pink charities raise enough money to carry out research, find cures, stop tumours, discover targeted treatments, provide information and support, then I can live with pink (let’s not forget that blue exists too though, with around 350 men a year in the UK developing breast cancer.) But a silent red heart? Come on! Wake up to awareness!

I urge you to take the time to read, digest and act upon the NICE NHS guidelines on being breast aware and then tell all your friends to do the same. That, is raising awareness. Early detection saves lives, don’t ignore any changes. I hear people telling me they’d rather not know if there was anything wrong, they don’t check their breasts and they don’t attend mammogram screening, they just want to get on with their lives in ignorant bliss. If I’d ignored a change in breast tissue in 2012, I would not now be getting on with my life. I would be enduring gruelling, aggressive treatment or facing a poor prognosis.

Raise awareness by sharing and talking about the facts! http://www.nhs.uk/Livewell/Breastcancer/Pages/Breastcancersymptoms.aspx

My trainers had been retired from running for about 18 months. My last race was with Team Stedman in Edinburgh in May 2015, when we ran the Edinburgh relay marathon, raising in excess of £2000 for Sarcoma UK. Our efforts brought a little comfort and joy to our friend Ros, who was at that time not able to run for her life, but merely able somehow, to find the strength to get from day to night and night to day in an increasingly debilitating, painful and frightening world. I took great strength from watching her facing her final days in this world. In the hospice I held her hand and recounted tales of the antics we all got up to on my 50^th birthday, our first visit to a casino, warming and floating brandy goblets in the hot tub under the stars (with a group of middle aged women who didn’t previously know each other) and wild and windy walking on the Ythan Estuary getting close up to the smelly colony of seals! At her bedside we laughed and I spoon fed Ros ice cream, which she devoured.

And so, the trainers are back on my feet and I have strived to get a few kilometres behind me in the last few weeks. I am now up to a reasonably comfortable 7km jog. I have a personal trainer lined up for a couple of trial sessions and a pledge to join the Striders on a Thursday evening. With my previous “frozen shoulder” now surgically cured and never better, I’m on course for a cracking event in May if my body accepts the fitness regime and gains stamina and strength without mishap!

Some people who have recently visited me or who read my FB posts have commented: “You are so lucky!”. Am I? Lucky to have had cancer? Lucky to have lived through, what was at times, a difficult marriage, wondering if we had the strength to hang on, to keep on? Lucky to have tolerated the hard and at times very lonely life that living in our very own “escape to the country” in NE Scotland brought?  I could go on. We all face many challenges. Lucky? I think not. My life is largely one that I have set out to have. I have made choices, I have made changes, I have planned, organised, removed stressful situations and I now infuse my days and weeks with bucket list events, feel good moments and take time just to be.  I am running for my life, running into my life, as life will not run to me, nor, will it run to you. You have to make it, you have to want it, you have to go out and get it. This is not a dry run, a rehearsal or experiment. This is the original and real deal. Look after it well and above all else, embrace it.

Why Italian? Celebrating New Year in Venice was quite simply magical. Anytime in Venice is magical. I have always loved Italy since my very first trip at the age of two! I want to scratch below the surface of tourism and experience a deeper flavour of this country and its people. Being able to order “un aperitivo” is simply not good enough!

Make some changes, make some plans. Be the leading light in your own life.

For now, Ciao. J

New Years Eve in Venice.

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.

 

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!

Breast Aware

It’s Sunday morning. The stove crackles and I’m cosy under the duvet with steaming coffee, looking out through an open wooden door onto Aldroughty woods. A carpet of copper, a cathedral canopy and diamond droplets dripping onto the canvas roof, patterned with silhouettes of leaves. I’m writing by candle light and soaking up the pure simplicity of being here in the woods. The kettle is heating on the stove top to fill the shower in the shed. Swinging the shed door open as I shower, leaving nothing between me and the great outdoors. Reminders of camping in India but with deer and red squirrel instead of tigers and crocodiles! Toasting bread on the fire triggers memories of being a small child and my dad crisping a slice of bread on a long pronged fork over the coke boiler in the farmhouse.
The yurt weekend was a wonderful, relaxing escape! A chance to completely relax and recharge. We encountered nowy weather on the journey there but were cosy and toasty warm in the yurt. Photos on facebook.

There were five breasts on the coffee table. The small private room was warm, a full length mirror stood in the corner. Prosthesis clinic. I didn’t sleep well last night, I hadn’t realised that I would be anxious about the visit to clinic. Fist time back at the hospital in six weeks and a very real reminder of the events of the past weeks. The nurse checked my scar and was happy I was healed enough to fit with a breast form. A recent small infection had healed but she did point out the start of keloid scaring and recommended twice daily massage of the scar tissue for the next twelve months. Various shapes of breast came out of boxes and were placed in and out of the mastectomy bra until we found the perfect fit! A very soft silicone teardrop, surprisingly natural, soft and comfortable. Thankfully the £135 cost is covered by the NHS. The “breast” is able to go in the pool, although the nurse couldn’t confirm how it would react to the sauna. It cannot go in the hold of an aircraft as it will develop small bubbles. If I wear it through airport security body scanners I will most likely be pulled aside and searched to determine what the random object is that appears on their screen. The “breast” may suffer at altitude should I go climbing high mountains! Otherwise it is washable and robust and guaranteed for three years. In a years time I can go back to clinic and be fitted with a stick on breast if I so desire! It adheres to the skin with a backing similar to the clear sticky pads often found holding samples into magazines. It sticks firm to the skin but leaves no residue when peeled off. It's ideally suited to running and also good for strapless dresses and tops. I was quite amazed at what is available post surgery even down to stick on nipples! I left clinic with just the new breast form in its pretty box and storage bag.

Yesterday’s news article on the effectiveness of mammograms was thought provoking. Although quite clearly saving lives the screening program is also resulting in women being “over diagnosed” and treated unnecessarily. My lobular cancer was difficult to pick up by mammogram. Even though I was able to feel the “lump” it was very foggy on the mammogram and did not show at all on the ultrasound. It was the needle aspiration which set alarm bells ringing and the core biopsies which confirmed the cancer. Ductal cancer is easier to pick up than lobular, but it shows how very important it is for women to be “breast aware” to know our breasts and to examine ourselves regularly. It’s breast awareness throughout our life, self examination and self referral that is saving lives too. We shouldn't all just be relying on routine mammograms.

The Thin red Line

After looking at The Scar Project Paul wrote to me:

“it’s very easy sometimes, to get a bit caught up in the Race for Life, tie a pink ribbon round the tree thing, but it’s much rawer and immediate than that. You, people like me, and all the photographed women who really are from completely different places in life, have to deal with the reality of amputation. Human beings can be truly awful sometimes, but they can also be wonderful and life changing too. Women should be aware that the universe is random and that, heaven forbid, it could be them or their family and loved ones next, and that it has to be dealt with head on.”

When I was first told that I would need a mastectomy, I really had no idea what that would look like. I asked how big the scar would be, where would they cut? But even having asked, it still wasn’t very clear to me. I was unsure whether I dare to look on the internet for pictures. Some days after diagnosis I took that step and found pictures, quite shocking at first and I did upset myself but I needed to know how it would be, how my body would look. After the initial upset I happened upon a story and also a beautiful photograph of a 40 year old woman who had been through mastectomy. To mark her survival Joanne had photographs taken of her with mastectomy scars just two weeks after surgery. Wishing to help others through their journey Joanne posted the pictures on Facebook but they were banned for “nudity and pornography”. I was completely inspired and comforted by seeing the photographs on the web before my surgery. If I looked like that after two weeks, I would be doing ok. I did look like that after two weeks.

It also became clear to me that other people also had little idea as to what my mastectomy actually involved. Did I still have a nipple? The answer is, no nipple, no nothing. The entire breast is removed neatly through a diagonal cut from underarm to the middle of the chest. My scar is a very neat, a thin line about 7-8 inches long and my chest is very flat, my upper rib bones visible. I don’t dislike my scar, of course I wish I didn’t have it, but I do and it tells a story, a very big one, as do my caesarean and appendix scars.

The Scar Project link was sent to me from a friend in Australia. It is stunning. I think this is what “breast aware” should be about. This is the real story, this is what it’s really like to find out you have breast cancer, this is why we check our breasts, these pictures tell you cancer is not choosy and life isn’t fair. These pictures tell you that women are vulnerable yet strong, determined and full of courage. These women want to show the world the journey they have been on and survived. We feel the pain with every blow of the sculptures hammer, yet with each strike we are shaped and we emerge more beautiful.
Last week, I sat and looked at my own photographs, from before and after surgery. They are an important visual, real reminder of what has happened to me over recent weeks. After much pondering, I decided to not bare all on the blog, but did post, in the Photograph Page, a black and white shot of just my scar.

Breast cancer is not a pink ribbon. For me, it’s a thin red line.

Thank you to Elaine for sending me the link to The Scar Project        www.thescarproject.org