I am Rosie Young, retired nurse and Cancer Champ for Oxfordshire Advocacy and I have blogged before about my experiences as a patient living with lung cancer.
I just want to share the shock I felt when the consultant phoned to say my Ablation had been cancelled. It was almost like a mega bereavement process, having been so ‘psyched up’ for this operation. I felt cheated in an odd way. In April there was the shock of the cancer coming back and then the long wait for the first operation date finally set in late June which was then postponed due to lack of hospital beds. And then the wait for a new date in August. And now the second cancellation and another 3 month wait as it seems that the area they were worried about in my lung has shrunk, my next scan will be in late October.
It’s a very strange emotional upheaval to go through. Everybody is incredibly happy that the possible tumour has shrunk and can’t understand why I am not over the moon. I have had to pretend that I am happy too. I have been feeling so guilty and conflicted, not wanting to burst the bubble, even with my advocate Linda. I didn’t expect to feel like that.
I guess I’d like every advocate out there to be really aware of the emotional roller coaster a patient goes through when there is a cancellation of an operation or change to planned treatment. When this happens you feel like you’ve lost control cos you can’t do anything practical to help yourself. Really listen carefully and do not make any assumptions or have expectations when this happens.
It seems to me from all the research I have done that no one has really got to grips with the psychological impact of cancer both on you and others around you who are in some ways more frightened than you.
Today I took part in a live online discussion run by The Guardian. The topic was the emotional and psychological impact of cancer. The panel included health professionals, representatives from the voluntary sector like me and most importantly, people who have been diagnosed with cancer.
It was great to hear so much enthusiasm for better support services for those affected by cancer. As the discussion progressed I came to a fresh understanding that several of the things we do as part and parcel of our project are vitally important.
We provide peer support; those affected by cancer are best placed to support others affected by cancer since they can really understand the emotional and psychological wringer that cancer can be. One contributor noted: “personal experience of cancer gives insights and a common platform for understanding.”
Another aspect of our project is independence, we provide an independent peer advocate; someone who will always listen without judging and who can empower the older person affected by cancer to share thoughts and feelings they might not want to share with those closest to them. Our peer advocates can help relieve a feeling of intense isolation and loneliness even for those who have lots of family support. A second contributor said: “loneliness and isolation many stem from going through such an intense experience – both physically and emotionally – that differs from most of the people around. Of course family members and close friends are also going through an unbelievably intense experience – but it is their own and is unique to them. Add in the way in which family members will often work so hard to protect/shield each other from their own distress – and it can feel lonely even in a most loving environment”
Thirdly, our development of a new National Health Professionals Board will enable us to find ways to reach the health professionals who may not always be as understanding of the emotional and psychological needs of their patients and their families as they might be. One lady who joined in the discussion described how her daughter in her twenties was diagnosed with leukaemia. She said: “I have come across some most wonderful, caring medical professional but have also met quite a few who really should not be working in the NHS and who lack sympathy and understanding for what we are going through.”
Being involved in this discussion reinforced my belief that what we are doing is making a real difference to real people. I’d like to extend my personal thanks to all of our wonderful peer advocates who do such fabulous things, unpaid but not unappreciated.