Until now, Finding Cyril has focused on raising awareness of breast and ovarian cancer which are the two main cancers that female BRCA mutation carriers are at risk of. It seems the right time now to start talking about men and the BRCA gene mutation cancer risks. This is because my grandfather, who carried the BRCA 1 mutation, passed away from prostate cancer in January. I wanted to share a little about him, his life and his BRCA story.
When my family learnt about BRCA 1 a few years ago, it came to light that my grandpa was one of four known carriers out of his ten siblings. A few months after learning that he was a carrier, he was then diagnosed with prostate cancer. We carry the BRCA 1 mutation in my family, and current research suggests that this mutation does not actually cause an increased risk of prostate or breast cancer in men above that of the general population. BRCA 2 gene mutation carriers are thought to carry a higher lifetime risk of prostate and male breast cancer compared with that of the general population.
My grandpa was 85 when he was diagnosed with prostate cancer and although BRCA was relevant to consider in the context of his diagnosis, it is also a common cancer in older aged men. Age is also a factor in determining the level and intensity of treatment for prostate cancer. For my grandpa, a treatment plan was put in place that seemed to be very manageable for him. This included an injection every three months and some daily tablets. On this treatment, the cancer was kept at bay for nearly two years. He also had COPD (Chronic Obstructive Pulmonary Disease), which he had been living with for quite a few years. This was always the more challenging condition for him to manage until about six months ago when the prostate cancer became increasingly harder to control. Over this time, he started to need more regular hospital admissions. Last November, his health began to decline really quickly. We learnt then that the cancer had spread to most of his body, and that there was little more that could be done in terms of treatment.
A plan was put in place to keep him as comfortable as possible, and have him cared for at home which was his wish. After five weeks in hospital, and with the support of a team of wonderful carers, he was moved back home where he was for three weeks before he passed away peacefully on 13th January with my nana at his side. Two weeks before he passed away, he asked me to make a birthday cake and arrange for all the family to be at his house to celebrate my nana’s birthday. We invited the whole family and were all able to squeeze into the bedroom where he was so that we could celebrate with him. It was such a special afternoon, especially because he had asked for us to arrange this.
The day my grandpa (or Popsi as we called him) passed away I heard someone say “the local high street is a poorer place without him.” This is so very true because it wasn’t just family and friends who he cared about. For as long as I can remember, he delighted in being able go out to the shops on his local high street. He knew everyone who worked there including the tailor, the chemist, the baker and the newsagent. And he didn’t just know them; they were part of his life. Up until only a few years ago, Popsi made sure that he would still find a way to get to the bakery on a Friday morning, where they would all meet for coffee. He had a collection of contacts that I don’t think any of us even fully knew about, but if he ever heard that you needed something, even just toothpaste, he would quickly call you and tell you not to get it because he could get it cheaper from someone he knew. And he really could!
Other than his family and friends, the main love of Popsi’s life was food. He loved everything about food, cooking it, eating it and especially talking about it. He was born in Bombay and lived there until he came to the UK with my nana, dad and aunt in 1965, so cooking and eating Indian food was the centre of all for him. Up until a few years ago, he and my nana continued to cook for us on Friday nights. And even when he couldn’t manage having us all at their house, he would pack up portions for someone to collect and distribute to our houses. But he was so very particular about food and what he considered good food. If you happened to go out for an Indian meal with friends, you could bet your life that he would ring you the next day to enquire about the menu, the portions and the price and size of the naan bread. He would then tell you the mistakes you made in ordering and what you should do next time. He knew everything about where to get the best local Indian meals. Growing up with this was amazing but somewhat challenging. If we were to decide on a family meal out, it was an unspoken rule that we would all take a back seat to the planning and just turn up when and where we were told to. He would pick the restaurant, order the food and tell the waiters how to cook it. At times he even used to take my nana’s home-cooked pilau rice to the restaurant with him, telling the waiters that although their rice was ok, it was definitely not to the standard of his wife’s, so he would rather they heat up hers and serve it to us. And because they all loved him, they would willingly oblige – it was really quite remarkable!
Popsi was really affected by the knowledge that BRCA has been passed down to my dad and to me. By that time, he had already seen two of his sisters go through breast cancer, so when I was diagnosed with ovarian cancer the following year, he really struggled with it. He often blamed himself for what happened to me, feeling that he was in some way responsible. It was always important for me to talk about it with him and tell him to try and not blame himself, which is easier said than done because hereditary illness so often brings this feeling of guilt.
During my treatment he became like a cheerleader for me. Being on chemo meant that I was at home a lot of the time, so I could to talk to him and my nana on the phone every day. At the time, he was struggling to walk and I was dealing with the after effects of a chemo session. I would set us both goals for the day. For example, he had to walk to the post-box outside his house and I would walk round the garden. My Popsi always loved reading my blogs and never took off his Finding Cyril band from the day he got it, even when he was in hospital and even when he passed away. We all noticed how he seemed to get some of his fight back during my treatment, despite his worsening health. I truly believe that he made sure he kept going so that he could see me get better physically and mentally. When I reached remission and then finished all treatment last November, he was so happy. He was also delighted to meet my boyfriend and I think for him it was extra confirmation that I was now in a much better place.
My Popsi died at his home which meant that the day it happened we were able to be at home with him once he had passed away. I knew that I could go and see him but felt really unsure about whether I would be able to deal with that. I have always been fearful of death and dying. There’s a part of me that sometimes tries hard to avoid even thinking that death happens. Living with cancer has meant having to confront these fears face on, but being honest, I don’t always cope well with this. Although I felt uncomfortable with the idea of seeing his body and looking at death in this way, it was important to me that I did. I kissed him and told him that I loved him. I told him again that he never needed to blame himself for what happened, and that I never ever had. I promised to always keep raising awareness of BRCA and helping others going through it.
So because this blog is a way to celebrate my Popsi and uphold the promise that I made to him, I’ve decided to talk about men and raise awareness of the impact of the BRCA mutation for them. And because of how much he loved to cook, what better way to think about it than as a recipe:
My Popsi didn’t really get a chance to be BRCA aware for himself and his family, but thanks to the growing research and understanding in this field, more and more people are now able to do this earlier on in life. Knowing the type of person that he was, I know that had he had the chance, he would have used the knowledge to help protect himself and his family as much as possible. That is one of the reasons why it is so important to me to continue the work that Finding Cyril is doing.
Below are some useful links for reading a bit more about BRCA gene mutations in men: