Friends and family support group

Breast Cancer Awareness Month has come and gone again with one day, Tuesday 13th set aside for Secondary Breast Cancer. For us “Every day is secondary breast cancer day”.

Tragically for the many people with metastatic breast cancer and their family and friends, this disease cannot be cured and will result in early death. I sat down to write these thoughts with a grieving heart and more than a trace of tears in my eyes and on my cheeks.

If you are affected by discussions around these topics, please stop reading here but if you are interested in understanding what it can be like for a family where my wife, our families magnificent mum was diagnosed with primary then secondary breast cancer which ultimately took her young life far too soon, please read on. 

Everyone’s story will be different, but each story around secondary breast cancer will tragically one day end the same way.

In April 2012, Elaine visited her GP after finding a lump in her right breast but was told it didn’t feel like a cancerous lump and she was very young to have breast cancer and not to worry. In October Elaine was very concerned that the lump was still there and returned to her GP and the same things were repeated. This time she said that if she was not referred; she would be heading to A and E, so she was referred for further examination. Elaine had not told us any of this until she had been referred as she did not want to worry me or the children unnecessarily. The biopsies showed that Elaine had primary breast cancer and that one of the three lymph nodes taken out showed traces of cancerous cells. That delay in Elaine being referred still upsets me as there may have been a critical negative impact due to the delay in referral. 

Fast forward through all the treatments, chemo, radio, a mastectomy, etc to April 2018 and Elaine’s “all clear”, (and no she did not ring the bell as she was now becoming aware of the chance that the cancer could spread to other parts of her body. It is everyone’s individual choice whether to ring the bell, but she chose not to.)

Seven weeks later, yes only seven weeks, Elaine had been feeling unwell for a short while and felt she might have indigestion, or at least that is what she told us. I think she feared the worst but again she was trying to protect us. While I was tutoring a course in Stirling, she went to A and E and was scanned and with her medical background, she realised that the cancer had spread to many other parts of her body. She then told me her thoughts and said she had a meeting with an oncologist the following week. That afternoon we were at a friend’s house for a social, how she got through that, I will never know, she was her incredible, beautiful self, I was a wreck.

Elaine was then told that if they could start treatment that week she may have a chance of living three months to two years, but if not she would not make three months. I won’t go into details of the treatment here and options pursued, but it took its toll physically and mentally on our whole family. Elaine returned to work through her own choice but it took its toll and eventually she needed time off to focus on herself for once.

Elaine passed away on June 29th 2020, two years and three weeks after her secondary diagnosis. In 2018 I would have given anything for Elaine to get the two years but even having made it to two years we felt cheated and that it was so unfair that someone who gave so much to so many had been taken far too soon and at the tender age of 55. Some eight hours later, on the same day, Elaine’s mum Helen passed away from a massive heart attack brought on by the stress of losing her daughter. Secondary breast cancer took two lives that day and shattered the lives of a family and so many of Elaine’s friends and colleagues. 

Elaine and I both have a strong Christian faith and believe we will see each other again but the feeling of loss and the huge void created in our family is devastating. The loss of Elaine has had an unbearable impact on our children and has affected them massively. I will not go into detail here because that is their story if they choose to tell it in the future, which I hope they will. As their parent, the upset, sadness, grief, and loss they feel impacts on me and there are days where I feel very inadequate in this role as I know that Elaine was so good in those situations with her kindness, caring and loving nature, her empathy, and loving qualities. She doted on her children, and she just wanted us to be a family. She was the glue that held us together, the person who made every day special with her presence, smile and positivity and the one for whom nothing was too much. She was our families mum.

Secondary breast cancer always impacts on me and my children. There is never a day passes where there are no tears. I am not ashamed of this; this is just how I feel. I miss her terribly and I still talk to Elaine, share my thoughts throughout the day and say her name regularly but every day is tough and not what we had hoped for or dreamed of when we got together in 1985. I don’t feel down but I do feel sad and am still grieving the loss of my best friend, my soul mate, my wife, my queen, our families mum, a wonderful and very special human being. Last week I went out for lunch with two couples who Elaine and I had known for many years, and it was the first time I had been with them without her, it was lovely being with friends but so hard knowing she would have loved to be there. Growing up I had never been an animal person, but within months of being married, we had two dogs and by 2018 having had 9 dogs, 7 cats and 4 horses, we still had 2 horses, 2 dogs and 2 cats. Most of the pets we had were from rescue centres and even one of the horses was an abandoned pony, Elaine was a rescuer of animals and people. Being rescued by Elaine was just a brilliant outcome, a real blessing. Having the animals has been so important for me. They make you get up and face the day as they rely on you and give you so much. Elaine had said to feel free to rehome the horses, but I can’t bring myself to do it as they were a connection to her and are so happy and content here. They don’t deserve to be uprooted at their stage of life. 

Elaine and I were very fortunate to travel a lot with our jobs and we were always thrilled for each other when we had an opportunity to go to new places, but we were even more thrilled when the other one came back. There is a huge difference knowing that someone is away but returning in a few weeks and someone being away and not coming back. Life can be lonely and every day has challenges. People say to me that you must have great memories, and there are great memories of fantastic times and shared experiences and events, but they are bittersweet and cannot be enjoyed as we used to together. Now they are reminders of the things that we will never have in the future or share again. 

There are days when the seas feel calm, and life is ok but other days when there are waves which can crash over you. There are also many things which can creep up on you. It can be a photo, a document such as a pet adoption paper, a concert ticket, an item of clothing from a picture, a song or something about to happen that you shared together in the past, like going to see the Bond films. On Sunday I went back to the church where Elaine and I first met, got to know each other through Youth Fellowship and started going out. We got married and started our life together there. We were privileged to have 35 years together, but it never felt like enough, how could it. Elaine did not fear death, she just wanted more time with her family and to help more people through her work.

I have tried to look after myself physically and mentally. My friends have been a huge blessing to me, they have walked with me remotely every week or fortnight over the last year, Gordon Glasgow and Elaine Murdoch in Edinburgh, Karen Taylor and Stuart Campbell in London and there’s my weekly call with Ivy Young. My average step count is over 12,500, up by more than 5,000 a day on last year and it has been great to be back coaching regularly with my colleagues at EKASC. The three ministers who conducted Elaine’s and her mum’s services have been incredible and I am indebted to David Childs, John MacKinnon and especially Edwin Gunn who also married us.

Elaine got involved with ABCD and MetupUK through Jo Taylor, who has been an incredible help and inspiration to so many. She attended a retreat they ran, which was packed with exercise, friendship, support, and positivity.

She left her chemo treatment on a Friday lunchtime to drive down to Saddleworth, had a wonderful weekend then drove home on Sunday, sat in her car outside our house for a while, and fell asleep with a smile on her face. She was hoping to go back to assist last year as she was not well enough to be able to take part, but Covid put an end to those plans. Since Elaine passed, I have stayed involved with MetupUK and attempted to contribute by advocating for better access to treatment, new drugs, and clinical trials among other things. They are an incredible group of people but sadly many have passed far too soon as that is the nature of secondary breast cancer.

I have been very blessed to be welcomed by the group and am honoured to be a Trustee. We have also identified a need to provide help and support for friends and family of people with secondary breast cancer and we are launching a Facebook Support group which will hopefully provide information and help create fundraising opportunities to advocate, lobby and encourage research to bring metastatic breast cancer into the realms of being chronic, not terminal.

The launch takes place on November 2nd which would have been Elaine’s 57th birthday. I think she would be really chuffed about that, all she ever wanted in life was to make a positive difference to people and make their lives better, she did that for us as a family and she is continuing to do that for many others. I know she would be really humbled but proud of this legacy.

Thank you, Elaine, for all you were, all you did, and all you continue to do through us in the future. You blessed our lives by sharing yours with us.