"A Difficult Experience"

A couple of years ago I was told by a registrar, in Antrim Hospital, that my CT scan indicated Lymphoma, this was only 12 hours after admission. It was such a shock, I hadn't been given any other options.  My world felt like it had turned upside down. After discharge I attended Laurel House for reviews with the Haematology Consultant, Registrar and Nurse Specialist. My confidence in the team and the care I was receiving was diminished when each one of them gave me different information about my diagnosis. I was completely confused,  stressed and felt I needed a second opinion. The Consultant in Antrim kindly offered me the opportunity of a second opinion in Belfast.

I attended Bridgewater Suite and at the first appointment I was listened to, felt  believed and the Consultant answered a lot of questions I was worried about. This was a reassuring experience. But again on subsequent reviews with Specialist Nurse,  I received conflicting information about whether or not I had the condition. I felt physically sick, I didn't know who to believe and was so stressed and confused I didn't have the strength to question the nurse or query what they were telling me. 

At the minute I still do not know if I have the condition or not, they tell me that it could be a low grade lymphoma yet it might not be! Not knowing, I feel is more difficult than knowing, as when you have a definitive diagnosis you can get treatment, move on and close the chapter. I take every day as it comes, when I feel healthy and well it's great and I'm very thankful for that. When I feel unwell I panic and worry, I try to control it but I have been told conflicting information so many times I find it hard not to jump to conclusions. 

I am writing this to highlight how very important it is that doctors should be equipped with all the information to evidence a diagnosis,  before they drop a bombshell to a patient, especially one like lymphoma. Initially I think there should have been more caution in telling me about the lymphoma. It started an emotional  roller coaster journey of uncertainty, fear and stress. Also please please please make sure, as a team, you are giving the same information to your patients. It is very traumatic, stressful and confusing when professionals are not sharing the same information especially when it is a possible cancer diagnosis and all you want to do is get rid of it. 

I want to acknowledge that despite receiving conflicting information it was always delivered in a caring, compassionate manner. I am very thankful to all staff who work so hard in difficult and challenging circumstances within Healthcare. 

I value the opportunity to share my experience and hope that it might shed some light on the impact such an experience can have on a person.