Not Just Surviving

Physical Health; The real road to recovery

Recognising that you aren’t coping with the consequences of a cancer diagnosis is the first stage to finding ways to move forward.

For me, this meant a visit to my GP.

Things were tough. I’d almost become bed bound. I couldn’t get in and out of the bath without assistance. Leaving the house brought on anxiety attacks. The weight I’d gained from the steroids made the pain worse, and the lack of exercise saw my weight increasing.

My GP referred me to an arthritis consultant. After tests I was diagnosed with osteoarthritis and joint hypermobility syndrome and referred for physiotherapy and occupational therapy.

Physio was a lifesaver and I was quickly able to move easier and the pain became more manageable. I also found practical ways of easing the pain in my hands and feet. I bought a paraffin wax bath for my hands, which I still use regularly. The warmth of the paraffin wax eases the swelling in my joints, as does a long soak in a warm bath with Epsom Salts.

I started wearing support socks, which are more commonly used for people diagnosed with plantar fasciitis. I’d tried every type of insoles I could find and none helped the pain in my feet. The support socks worked like a dream. I could now walk for long distances, which in turn helped my other fitness levels.

A year ago, I joined the local fitness and wellbeing gym. Trying out different activities helps to find the ones that you both enjoy and that suit your condition. For me, it’s aqua fit sessions, pilates and yoga. I also swim regularly. After avoiding gyms all my life, I now find that going to the gym isn’t just a way of improving my fitness levels, it’s great for increasing social interaction. Aqua fit is such a laugh, although I’m not sure how smart it is to have 30 women between the ages of 50 and 80 doing star jumps in water!

Mental Health

Improving my physical health was a positive choice, but improving my mental health came about quite by accident. 

I met the Lead Cancer Nurse at my local hospital for coffee, who then put me forward to join a new Patient Forum that was being set up by the West Yorkshire & Harrogate Cancer Alliance. From here, my involvement with various events escalated and now I don’t have a week when I’m not doing something to share my experience, or use my knowledge to try to improve services for cancer patients.

Professional Patient: This is not my hobby – this is my life.

My partner now calls me the professional patient – I prefer EXPERT patient. I have made it my mission to learn all that I can about ovarian cancer. Being involved with ovarian cancer charities has helped me do that and to keep up to date with new treatments and trials. I have been lucky enough to attend events organised by ovarian cancer charities, OvaCome and Target Ovarian Cancer. I want to make things better for those women unlucky enough to get a diagnosis in the future.

I now attend meetings of the Gynaecological Cancer Strategy Group at my local hospital as patient representative. Being a part of the Strategy Group not only allows me to provide a personal experience of services, ensuring that standards are maintained, but it helps me to understand my own experience from the perspective of the professionals who provided my medical care. I now understand why and how things happened and can suggest ways of improving services, although it can be a bit daunting sitting next to my surgeon, the man whose skills saved my life. 

I sit on the Steering Group of Cancer Support Yorkshire’s Next Steps Clinic; a service for patients who have finished treatment, or where there are no more treatments available. The project provides a holistic approach to moving on from a cancer diagnosis and treatment, by signposting patients to appropriate services. It’s a service that I would very much have benefited from when I finished treatment, but wasn’t available then. Perhaps if it had been, I wouldn’t have needed the GP referral to the arthritis consultant and physiotherapy.

Being involved with the project also enables me to use the transferable skills from my life before diagnosis, through helping with data analysis and working with Macmillan to run a focus group to evaluate the impact of the project on patients.

In launching the project, I was asked to participate in a short video, sharing my experience of treatment and of why I think the project is important and why I wanted to be involved. 

Filming was nerve-wracking, but a new experience I enjoyed and have become more used to. Now I seem to be asked quite a lot to be photographed or filmed, particularly by the Cancer Alliance. Thankfully attending the gym is having a positive effect on my appearance too, which comes in handy!

Setting up support groups

The centre at Cancer Support Yorkshire has been a great help to me, from attending counselling during my treatment, to becoming involved with the Steering Group, to establishing a Gynaecological Cancer Support Group. During my own treatment, I received a lot of emotional support from a fellow-patient. This made me realise that there was a need for a support group for women going through treatment who didn’t have any support.

I was able to gain some personal development through attending an event provided by Macmillan for individuals running support groups. Macmillan also provided funding for a Christmas lunch that I organised with the woman running the Bowel Buddies Support Group. The lunch was a great success, with lots of people attending the Cancer Support Centre and mixing with members of other support groups.

Research Advocacy 

I am a Patient Research Advocate for Target Ovarian Cancer. This has allowed me to use the skills that I had gained prior to diagnosis, when I was a researcher working for various universities. Having a first-class honours degree and a Masters, but not using your skills you’ve learned is frustrating. Re-engaging with a part of your previous self is really rewarding and is an important factor in finding your new normal, your new way of life, that includes using your brain.

Chemotherapy impacted heavily on my memory and on some of my cognitive capabilities. Being able to use my brain has improved not only my brain function, but my confidence in using it.

Sharing my experience

I have shared my experiences of having a cancer diagnosis at a number of events, within the local hospital and with various cancer charities. The first time I presented my experience was daunting and frightening.

In my life before cancer, I was employed by a local authority managing a small team working to improve the lives of victims of domestic violence. I spoke at conferences locally and nationally and represented the UK at a conference in Madrid, informing local authorities across Spain how I provided excellent services for victims of domestic violence. But that hadn’t prepared me for standing up and talking about myself in front of health professionals, including the Clinical Director of the hospital where I had treatment.

Everywhere I have shared my experience, contributed to meetings and discussions, I have been met with kindness and courtesy. I have been made to feel appreciated and that my contribution has been valued. Being involved in these activities keeps me going – it has helped me shake off some of the chemo brain. It has given me a purpose and I hope that I can continue to help to improve services and provide patients with what they need and deserve.

Organisations providing services for people with a cancer diagnosis shouldn’t be afraid of involving patients in service development. Each person has a history, a life before their diagnosis and with that experience comes transferable skills. We all know how important fundraising is, but we can do more than bake cakes and shake the buckets.

Patients have a knowledge about their own experiences, but also, with the growth of social media, they are able to converse with other patients, learning from each other. Patients are now able to hear from other patients where the best treatment can be obtained, what new trials are available, what side effects they can expect from treatment and how to cope with those side effects. This knowledge is invaluable to patients and to service providers. Together, I believe we can help each other to help those who come after us.

In 2015 I was employed by Bradford Council managing a small team working to improve the lives of victims of domestic violence. I spoke at conferences locally and nationally and represented the UK at a conference in Madrid, informing local authorities across Spain of how we had become a leading authority in providing services for victims of domestic violence. But almost overnight, my life changed, when in November 2015 I attended my GP with a persistent cough. Blood tests found that my CA125 was 5,600 (normal range is under 35). On Christmas Eve 2015, I had a CT scan which revealed a large mass on my left ovary. In February 2016, I had radical surgery, to remove 2 large tumours on my ovaries (20cm & 18cm), both of my fallopian tubes, my womb, several lymph nodes and my omentum. I was diagnosed with stage 3c high grade ovarian cancer.

Between March and May 2016, I had chemotherapy. I had a severe reaction to Taxol on my second session, which was alarming, but the nurses were amazing. I continued chemotherapy with just Carboplatin. Finishing treatment in June 2016, I was told that there was ‘no residual disease’. Thanks to my surgeon and my oncology team, I remain well and have not had a recurrence.

In October 2016, my partner and I had a civil partnership. I now spend my time involved with various cancer charities, attending the gym and working on my hobby of glass fusing.