Coping and opening up: In her third blog, Sarah talks what it was like to tell her family and friends that she had ovarian cancer, and how she coped with her diagnosis. “It was so incredibly important to discover that I wasn’t on my own and to be able to be comfortably honest with people who completely understood”
It was like a drip feed but only because of the way things happened. We had told a few people in February that we were going to try IVF, then I told them I had a cyst, then about borderline cells which were found and then finally the worst bit in September was telling them it was actually invasive cancer. It’s a truly horrible thing to have to tell those you care about the most this news. People closest to me went away and found out what the diagnosis meant and I didn’t have to spell it out to them. It helped knowing that they had found about it and understood. I found it difficult talking to other people who hadn't grasped the implications.
Many people don’t know what to say
When you tell people you’ve got cancer they often say, “Oh my next door neighbour had prostate cancer” or something similar. Some then say, “but he died” and then they look a bit awkward. I’ve got quite a dark sense of humour, so over supper my partner and I would compare stories we had been told. I would relay that I had been given a 'lung cancer', 'two leukemias', 'three breasts' and 'two brain tumours' and he would tell me the types he’d been told about - it was our way to cope with it!
I think many people don’t know what to say, so they tell you what they know about the disease, or because they can't talk about cancer with anyone else they feel that they are able talk freely to you about it, so unburden themselves completely. We were told loads of cancer stories and its best to work out how you’re going to deal with that as it can be incredibly difficult sometimes.
You have to decide how you’ll cope
You have to decide how you’ll cope – someone will tell you a 'cancer story' when you’re really tired or anxious, you've heard ten cancer stories that day and you might just fall apart with the last person otherwise. People will also tell you, “you've just got to have a positive mental attitude” – I found that difficult because I think so much of it is just chance, but especially because it does a great disservice to those who’ve died of the disease, as if they, in some way didn’t have the right frame of mind, which is absolute nonsense!
I realised once I was in hospital that I had to not lose the plot and trust the medical team, and that this was my role, all that I could do and then after that it would come down to chance. At times I would just focus on holding things together for that minute, or ten or until the morning... it was the only thing to do, but so important and it got me through the hardest of times.
It was important to me to understand and be part of the decision making process
Before and after surgery though, it was important to me to understand and be part of the decision making process and for that I needed good quality information. We are all different, but for me, feeling empowered was vital and there is a lot of evidence that the 'expert patient' can improve outcomes and this certainly helped my recovery- both practically and psychologically. I wish at that point I'd had Target Ovarian Cancer’s guide 'What happens next?' as it’s a great source of information, insight and support and I often recommend it to others.
Things that really helped me were talking online and meeting up with other women with this diagnosis and sharing our stories and experiences. At the Living Well residential course for 'younger women' organised by Target Ovarian Cancer and Penny Brohn it was so incredibly important to discover that I wasn’t on my own and to be able to be comfortably honest with people who completely understood.
I learned a lot too from these wonderful women, found ideas that proved really helpful as well as being able to laugh at some of the more bizarre and ridiculous aspects of the treatments. The isolation caused by this disease and its consequences is perhaps one of the hardest things to cope with and making connections with others who are finding their way through similar challenges really, really helps!
- Read Sarah's first blog: Finding my way through it
- Read Sarah's second blog: When so much happens, it changes you