On October 15th 2015 I was invited to speak at the National Forum of Gynaecological Oncology Nurses conference on survivorship. There were about 80 people there, mostly nurses, and they wanted to hear about the patient experience. This is what I said:
Good morning and thank you for inviting me here to speak with you today. I’ve never opened a conference before and I think the fact that I am standing here, kicking off what looks like it will be an interesting and challenging day says a lot about your commitment to putting patients first.
My name is Daloni Carlisle and I’m here to talk about survivorship from a patient perspective. I’m a womb cancer survivor but I am also a journalist and even before my diagnosis I had written articles in the professional press about survivorship. I thought I knew something about it. I thought I knew what I was in for. All I can say is that knowledge and experience are very different things.
Let me start by setting out what I think survivorship means. It’s an idea that sums up how life is never the same again for people who have had cancer. We might have finished our treatment but we may have long term side effects. We might have “no evidence of disease” now but we all fear recurrence in the future. I’m not sure that there is anything unique or special about survivorship in gynae cancer; every individual’s cancer journey is different and special and at the same time we all share characteristics with each other.
So, there I was in December last year. I’d had major surgery in the March which found that the uterine serous carcinoma diagnosed a month earlier had spread half way through the wall of my uterus, to my ovaries, fallopian tubes, cervix and into 15 lymph nodes including one that was so wrapped around my aorta that surgeons could not remove it. I’d had six rounds of carbo taxol, 31 fractions of external beam radaiotherapy to my pelvis and two fractions of internal brachytherapy. I was pooped but I was done. With treatment over, I could start survivorship, finding a new normal.
At first, life was scary. No, terrifying as I immediately self-diagnosed any small problem as cancer. I’ve been told that my cancer will return – but I don’t know what that means. Months? Years? When? Where?
I was hyper alert to any small change. A fluid-filled lump that appeared between my toes had to be toe cancer. Oh hang on a mo, it’s athlete’s foot. An ache under my right shoulder blade was obviously secondary liver cancer. Or could it be a slight muscle strain brought on by days of coughing? I coped by repeating to myself a mantra given to me by the oncology registrar: common things are more common. I’m better at it now but I have to say no-one has been willing to talk to me about what recurrence might look or feel like. I’m instructed to tell my doctors about any symptoms. What symptoms? Anything unusual that lasts more than a couple of weeks. As my 20-year-old niece might say: “What the hoot does that mean?” If it is not possible to be more specific, then is it possible to explain why?
Those of us who have had lymph nodes removed (I had 31 whipped out) are warned we might be affected by lymphodema. I found this particularly worrying and had images in my mind of grossly swollen legs limiting my movement. I was lucky enough to get an appointment with a lymphodema nurse at my local hospice. She took the time to explain the risks, the realities, what I needed to look out for, how I could help myself, what to do and what not to do. It is a conversation many more women would benefit from but too few are able to access the expert help.
Like all cancer survivors, gyane cancer survivors struggle with energy levels post treatment. A month after treatment I was desperate to get back to work and have something to occupy my mind. I had been sitting on the sofa for ten months by that stage. I’m lucky in that I work for myself from a shed at the bottom of my garden and was able to return to work quickly, if only for two hours a day. I just sort of went for it; but I know others really need help planning that return to work.
I did that thing so many energetic middle class women do and threw myself into advocacy and cancer activitsm – trying to make use of my experience to the benefit of others. I organised a belly dance in aid of Macmillan, was invited to join the Womb Cancer Alliance, spoke at events, trained as a Macmillan Community Champ offering support online and blogged.
And then came the psychological crash. I knew it was likely. I had read about people feeling very down and abandoned by the system. I almost felt that knowing about this phenomenon somehow made me immune.
But I repeat: knowledge and experience are quite different and sure enough, four to five months after treatment ended I found myself depressed. “I’m depressed,” I told my husband. “Oh dear,” he said. “Try looking forward to our summer holiday.” When I realised that actually my preference was that the family should go without me while I hid under the duvet, I realised it was time to get help. My very sympathetic GP prescribed some antidepressants and referred me for talking therapy and I am feeling much better – although a bit chubbier.
I’ve said that gynae cancer survivors are in many respects like all cancer survivors but there are some specific considerations. I had a total abdominal hysterectomy pre menopause, which meant I went through a surgical menopause. It’s like being run over by a train as the hot flushes hit full on with no warning. In its favour, it is over quite quickly – in my case in months rather than the years reported by some of my friends going through menopause naturally.
The impact of the surgery and months of chemotherapy and radiotherapy have taken their toll on what I shall coyly choose to term marital life. I’m choosing this because it is symptomatic of just how hard it is for women to seek help. Even with everything we have been through and had to discuss with our doctors, we still struggle with the language to have frank conversations about our sex lives.
The research literature tells us that regaining intimacy is one of the hardest parts of recovery for women and their partners. It doesn’t seem to be an area where the oncology team has the expertise or the capacity to support my husband and me. The patient literature tells me that this is a tricky area and that there are ways in which primary care can help. I’ve yet to be asked about this by any health professional and I’m yet to find the confidence to seek help. Should it be a patient responsibility to start this conversation? Or are you not asking because you don’t know how, or know that expert help is not in fact available?
In some ways, I am lucky. I am well informed and knew what to expect; I know how the system works and where to get help at different points. I have a brilliant GP and a fabulous MDT at the teaching hospital in charge of my care. I use this knowledge and my experience in advocacy work. I am, for example, a Macmillan community champion, which means I provide online support to women diagnosed with womb cancer. There is so much these women do not understand – such as why one person is followed up with regular CT scans while others are followed up symptomatically. Have the reasons been explained and they’ve forgotten? I couldn’t possibly say. All I know is they appear not to understand and it worries them.
What do I want from my healthcare providers as a gynae cancer survivor? I think tools such as the Macmillan Recovery Package and the electronic holistic needs assessment are a great start but they need to be implemented with real compassion at the front end and real resources behind them.
I want to know that you understand how I have been affected by this experience. I used to be sure of my world. Now everyday feels like a leap into the unknown. I’ve lost confidence in my body and live in a place of fear; my mild hypochondria is a manifestation of this. I’d like you to reach out to talk about difficult things like recurrence and sex. I want information. That’s not the same as reassurance. It’s you attempting to extract the knowledge in your head and presenting it to me in a way I can understand.
But above all, I’d like you to be kind. I know you see cancer patients and cancer survivors everyday. But I’m unique and the only experience I have is my own.
Thank you for listening and I hope you enjoy the rest of the day.
