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!

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

Annual check up & Update

Lots to tell you!

Same familiar environment at the hospital – difficulty parking (do they not realise how much stress this causes patients?) same broken TV in the waiting area, pale blue walls and the ticking clock. I felt quite sick, we sat but didn’t speak to each other, dealing with our own thoughts, we just squeezed hands now and again until my name was called by a friendly nurse, who then proceeded to ask if I had been here before?...

Gown on and more waiting until a knock at the door but it was not my consultant but a junior doctor. Mixed feelings about that. I thought my consultant (who was on duty in the clinic) would wish to see me at my first check up to see how her surgery had healed and to check how I was doing? But my last meeting with her was a bit frosty as I clearly asked too many questions and pushed for a visit to genetics and gynaecology. By the way, I still await a follow up and results from that appointment some four months ago. When I asked about it at my check up there was nothing in the notes as the notes were “lost” at the time and had clearly not been updated since.

The doctor was pleasant and thorough, checking over my scar area and reporting that the mammogram appeared normal, no visible calcifications, it did show dense breast tissue but nothing untoward, no change since a year ago. That was very comforting news. She queried some lymph nodes under my right arm and checked with the consultant who still didn’t want to see me but sent me for an ultrasound scan just to check. As I lay on the couch I became very aware the fine line that determined whether or not I went down the same path as last year. Thankfully, nothing suspicious and I was free to go home. I’m hopeful that is the end of the hospital visits until next years check up.

I’ve had a great response from my posting on the Aberdeen Artists page on Facebook. In the region of 10 local, talented artists have come forward with a view to getting involved and getting an exhibition off the ground. Already cemented a couple of meetings for November and have also been invited to sit for a still life art group. I have approached CLAN, our local cancer centre who are willing to promote the idea to other ladies who have been on a breast cancer journey as more models and stories would be good. I have also had interest from an educational point of view from Robert Gordon University Social care / Medical departments. There’s lots of work involved and it’s very exciting!

I attended a feedback session last week at CLAN for the University research project that I attended some weeks ago re Our Cancer Journey. The findings were that we either received really excellent care or really terrible care with nothing in between. Many of the underlying issues began with the GP and then proceeded to result in lack of communication between departments and no continual, consistent care and a lack of information. I was not surprised by any of this but it is clearly unacceptable. This should not be a game of Russian Roulette.

A light lunch was provided and the opportunity to chat to other cancer patients and to staff. We all found it very cathartic. I took the opportunity to network in an attempt to make some progress with my art project! This resulted in opening a friendship with another lady who has undergone a double mastectomy who is keen to be involved and positive interest from CLAN and Robert Gordon University.

Very excited about my 50^th birthday trip to beautiful Tuscany. At the age of 48, for a fleeting moment I had no idea if I would make it to 50. I have everything to celebrate! To the fabulous six ladies who accepted an invitation to travel up to Aberdeen and help celebrate further in a couple of weeks, I very much appreciate you continued friendship and support and I so look forward to our fun weekend together!