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!

Fun at Fifty!

Gosh, a month since I posted on the blog! Tuscany was amazing, ticked all the boxes, I had a very special time and a very happy 50^th birthday. I was quite stunned to come across two other breast cancer survivors in our holiday group. (16 of us, 4 men and 12 ladies). We had a bit of a laugh, wanting to tell the rest of the ladies in the group that they would all be fine and free of cancer as we more than represented the statistic of one in eight life time risk of developing breast cancer! (Our ages, 49, 50 and 67) We shared our stories, it was good to be moving on with our lives and to be amongst a group who wished to enjoy life, who shared similar interests and who enjoyed good and interesting company. The walking was scenic and not too challenging, covering around 40km during the week. I was, by the end of the week, shattered, a combination of early get ups, late nights and exercise, but I can’t wait to book my next Exodus holiday!

I ticked off a couple of things from my bucket list on my return. I shared a wonderful weekend back at home with my girlfriends and ticked off “An evening in a casino”! I managed to lose a fiver and had fun learning to play Black Jack and roulette! Also ticked off “Seeing stags in the wild” but unfortunately didn’t hear them roaring as it was too windy out on The Atholl Estate

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I received a very special birthday gift, a copy of The Scar Project Book and a copy of the DVD Baring It All, the story of David Jay’s photographic exhibition of young breast cancer survivors, portraits that are beautiful yet challenging, cathartic and empowering.

Tomorrow is a big day. I am meeting with six local artists and having my first photo shoot. I never imagined that I would one day have a boob job and pose topless! Tomorrow is our first meeting to discuss ideas and how to proceed. I have four post-surgery ladies including myself interested and hope to find one or two more willing to take part. The interest and support in the Breathless Breastless Project has been amazing. I am now looking at venues and funding and making plans for an exhibition next Spring.

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!