Here Frances writes about sharing her story of life after cancer treatment with Macmillan, about being involved in our campaign for better support after treatment, and talking to MPs and ministers in Parliament about the challenges she faced:
(Pictured: Frances (right) with her MP Alex Sobel)
Having been involved with Macmillan, as a service user and a volunteer for over five years, I was curious when I was approached to take part in the Life after treatment campaign to see if it was something I could help with.
From my first interactions with the Macmillan staff who were involved, I felt reassured and comfortable with the focus of the project. It was an interesting challenge to take my mind back to what my life was like when I first finished treatment, however I was well led through a series of questions over the phone which jogged my memory of this time. I felt that I was able to expand on some of the more overlooked aspects of life post treatment.
I felt motivated to be involved with the campaign because I have hope that future generations of people will have a better experience with the variations of this illness than I did.
My husband and I struggled when my treatment finished, in a myriad of ways that we could not have predicted. It affected my ability to work, our financial position, my long term physical and mental health and we found that there was no comprehensive plan from my medical team or a local health authority to guide us and tell us how to navigate this time. Recalling these memories informed my understanding of the importance of this campaign for those people who are still vulnerable.
It was easier than I expected to share my story over the phone, and I was really pleased to be able to see a copy of the transcript and edit any areas that in retrospect, I was not comfortable with. A few months after this initial call, Macmillan brought a photographer to my house to take some pictures to accompany the report, and with the assistance of the very friendly Campaign Officer, I felt at ease chatting and being photographed.
When Macmillan’s Life after treatment report was all pulled together and ready, I was asked if I wanted to come to the launch at Parliament which coincided with Macmillan’s World's Biggest Coffee Morning.
I jumped at the chance to not only see the how the report looked, but also to meet the other people who had shared their stories as part of the campaign. To have the opportunity to visit Parliament and to talk to some MP’s face-to-face about the campaign was really exciting.
After a slightly bleary 5.30am start, a strong coffee and a very fast train to Vauxhall, the big day had arrived. As ever, I was looked after really well by the Macmillan team who arranged all my travel, and met me and the other report contributors at Macmillan’s office.
Following a quick de-brief, we made the short walk to Parliament and began the process of getting through the stringent security checks. Once we moved into the main enclosure of the House, it was impossible not to be more than a little awestruck in the shadow of such a historic and grandiose building.
The Coffee Morning was held in the Jubilee Room, a snug Arts and Crafts space which had been doused in Macmillan green, and was strewn with a delectation of cakes and hot beverages.
There was a very brief window before Prime Ministers Question Time, when MP’s and Peers dived into the room to grab a piece of cake, grab a photo and do a quick tour of the room. By 11.30am it was heaving and I gave a very short speech, following on from my fellow campaign story contributor Alan.
I did not feel nervous as I looked out over the sea of faces and spotted the Heath Secretary staring back at me, but I was energised by feeling that I was helping in some small way, to bring the experiences of cancer patients to the political sphere.
I sought out my local MP, Alex Sobel, who was very engaged and interested about the campaign, and I came away feeling that I had made a very useful connection with someone who could help cancer patients in my local area of Leeds.
On the whole, the MP’s and Peers that I spoke to were all very engaged and interested in what the key issues are for people post treatment and I learnt that you have to be concise and to the point when telling them what you would like them to address, because their time is so limited.
There was only one MP that I spoke with, who reignited the frustrations that I felt about my experience and I came away feeling angry and emotional about the lack of understanding still about facets of this illness.
Overall though, I was so pleased to have attended and to have felt that this piece of work will start to be placed on the agenda for Parliament. As ever, I felt proud to support Macmillan and to have put my name and face to the campaign. It is a day that I will not soon forget.
Find out more about our campaign to ensure people have access to the right support to help them live well after cancer treatment.
