I realised that I had completely underestimated the effect having cancer would have on me - Nina Jackson

Nina Jackson, patient representative on the Macmillan Cancer Improvement Partnership (MCIP)

Nina Jackson

I was diagnosed with breast cancer at the Nightingale Centre at Wythenshawe Hospital in May 2012 when I was 45. I had the lymph nodes in my left armpit removed. I then had chemotherapy and radiotherapy at The Christie.

In April 2014 I had to have a mastectomy. I chose to have a reconstruction at the same time using fat from my abdomen. This was carried out by the plastic surgery department at Wythenshawe. I then had further chemotherapy at The Christie. 

It is now over a year since I finished my treatment and so far all is well. Getting back to work full time and doing my full range of work was an important milestone. Luckily I have a supportive team manager and an understanding team.

I have been lucky compared to some cancer patients, but I do have some lasting side effects including some permanent hair loss caused by the Docetaxel chemotherapy I received. I have mild lymphoedema in my left arm. It is well managed, but I have to take particular care of my arm to prevent problems developing. This includes massaging it nightly to encourage fluid to drain. I have also developed osteopenia due to my treatment. I take medication to hopefully prevent this from becoming osteoporosis. I have to make sure I eat plenty of calcium rich foods and do weight bearing exercise.

These side effects and my operation scars are a permanent and daily reminder that I have had cancer. When I was first diagnosed I said I was going to treat it as an isolated incident. However, as time went on I realised that I had completely underestimated the effect having cancer would have on me. Without being too dramatic, I didn’t anticipate that it would become part of me.

In the autumn of 2013 I went to a Macmillan workshop to give feedback on my cancer experience. I felt that I had had a mostly positive experience. I thought it was important to share good practice and what had worked well. Following the workshop I became involved in the Macmillan Cancer Improvement Partnership (MCIP) as a patient representative.

This is a partnership between Macmillan, the three Manchester clinical commissioning groups (CCGs), The Christie, St Ann’s Hospice, the main hospitals, Manchester City Council and people affected by cancer (patients and carers). The aim is to improve the experience of everybody affected by cancer in Manchester at every stage of their journey.

I have been involved in the ‘Primary, Palliative and End of Life Project’. This project developed a locally commissioned service which included identifying clinical and non-clinical cancer champions in each GP surgery, providing training, making sure cancer reviews happen and improving end of life care. The idea was to improve cancer services for patients and their carers at the GP level. This service has been a recognised success with 90% of GP surgeries completing the standards.

I was able to give the patients’ point of view using my experiences, ensuring patients’ needs were always taken into account.

As I had never been in the hospital system before I did not realise that my GP would be involved in my care. One area I felt strongly about was that GP surgeries should contact all patients within two weeks of their cancer diagnosis to say we know you may not be able to take it in yet, but we are here and can offer help. This became part of the locally commissioned service. I am particularly pleased about this as services can be improved but if patients aren’t aware that they exist they won’t be used and won’t be able to help the people they are designed to help.

In November 2015, MCIP and The Christie hosted a ‘Living With and Beyond Cancer’ event for the clinical and non-clinical cancer champions in Manchester Town Hall. They asked me to speak to give a patient’s view of living beyond cancer. Although it was rather daunting speaking in front of 100 people it was a good experience. I and the other patients who took part received positive feedback. Hearing true stories from real people helped give GP staff an insight into the issues faced by people affected by cancer. This increases awareness of patients’ needs.

I was able to talk about how I had found the effects of cancer don’t end when treatment ends. I still think about cancer more than I expected to. The fact that I have had treatment twice makes the worry of reoccurrence more real. I particularly worry about the cancer returning and not knowing it has. One unexpected experience was, when at one point two friends had just found out their cancer was terminal and another had just been diagnosed with secondarys, I felt bad for getting better. Some people laughed and thought I was crazy. It wasn’t until I spoke to another friend who had had similar feelings, that I was reassured and found this was not necessarily an odd reaction. 

A positive is that I have made some new friends through having cancer!

I have felt listened to and that my contribution has been valued. I feel proud that I have hopefully helped improve the cancer services and experience for other people affected by cancer in Manchester.

I will now be involved in phase three of the MCIP programme, which has been set up to improve breast and lung cancer services.

I have received treatment from my GP, district nurses, both the Nightingale Centre and plastic surgeons at Wythenshawe and The Christie. I know from my experiences and those of other patients that communication between all of these sectors is vital. They are all part of both the treatment and moving forward jigsaw. Hopefully the passage for people affected by cancer will run more smoothly.

Macmillan encourages people who use their services to give something back. This is something I have wanted to do. It has been rewarding and given me a sense of achievement. There are lots of opportunities and ways to do this – it doesn’t have to involve speaking in front of 100 people! Keeping the real needs of patients at the top of the agenda is vital. Every person’s experience is different, so the more people who become involved the more this can happen. Unless you have had cancer you really don’t know what it feels like from a patient’s point of view.

You can find out more about MCIP and how to get involved at www.macmillan.org.uk/aboutus/healthandsocialcareprofessionals/macmillansprogrammesandservices/cancerimprovementpartnership.aspx