This is Care Opinion [siteRegion]. Did you want Care Opinion [usersRegionBasedOnIP]?
Care Opinion

I feel like I've had to chase people for questions and answe...

Posted By Montysmrs

"I feel like I've had to chase people for questions and answers"

About: Queen Margaret Hospital / Medical Oncology

(as a service user),

My journey started earlier this year with an appointment to discuss a lump I had found. When I walked into the room there was a consultant and a breast cancer nurse specialist (who was lovely). The consultants matter-of-factly told me that, as I expected, I have breast cancer. Well, actually no, I wasn't expecting it, I was hoping it would be  a fatty lump. How do you answer a statement like that when you're on your own and feel like your whole world has just collapsed?

From then to the present day, I feel like I've had to chase people for questions and answers , which is something I didn't think would happen. 

I feel like I was told I had cancer and then been left to my own devices to navigate this journey on my own. 

I am mortified, not for myself but for the many other people that feel lost on this journey,even something as simple as radiotherapy. Are there any do's and dont's? I have no idea as no one gives you a guide to what can happen, what you can and can't eat and do.

I feel like we should have some form of navigator for patients, and once I've completed my band 4 training, I will be looking to see if there is a way I can help people that are going through what I am. They won't feel alone or like a nuisance, they will feel like they matter and that they are listened to and cared for. As of right now, I don't feel anything like that, and to also help them find the answers.

This journey is heartbreaking enough without having to look to Dr Google to find out answers .

I know they deal with thousands of people a year, but how many people are not experienceing the care and compassion that they should be?

More about:
Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Murdina MacDonald, Lead Cancer Nurse, Cancer Services, NHS Fife 4 months ago
Murdina MacDonald
Lead Cancer Nurse, Cancer Services,
NHS Fife

Submitted on 14/12/2023 at 18:18
Published on Care Opinion at 18:18

Dear Montysmrs

My name is Murdina MacDonald, lead Cancer Nurse, Thank you for sharing your journey, and I’m truly sorry to hear about your cancer diagnosis and the challenges you’ve faced. I'm sorry we were not able to help you to process such difficult news nor recognise that you may need support or information to navigate this challenging time. I know our team will be truly saddened to learn about your experience as they wish all of their patients to feel supported and cared for compassionately. Your insights however into the need for better support and guidance for patients navigating through such difficult times are valuable and your perspective on the need for guidance around practical aspects of receiving and after care from radiotherapy and lifestyles adjustments are invaluable. In considering all the issues that you have raised I will discuss them with our Advanced Breast Nurse Specialists as there is a few key lessons that are resonating with me on reading your experience around checking resilience of our patients, seeking support matters, advocacy for our patients, knowledge is empowering.

We do have a number of patient navigators in some of our cancer services and their role is to support patients through what is happening next in this emotional and complex journey that cancer is.

Your commitment to making a positive change, especially by considering ways to help others after your band 4 training, is commendable.

Your perspective sheds light on the importance of compassion and support throughout the cancer journey.

I fully understand and respect your decision to choose an anonymous platform and I appreciate your choice. Should you wish to reach out to me directly, my contact details are available murdina.macdonald@nhs.scot

I’m here to support and assist in any way needed.

Wishing you strength and recovery.

Warm Regards

Murdina

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Response from Lucy Cockburn, Advanced Clinical Nurse Specialist / Breast Team Lead, Breast Service, NHS Fife 4 months ago
Lucy Cockburn
Advanced Clinical Nurse Specialist / Breast Team Lead, Breast Service,
NHS Fife

Submitted on 21/12/2023 at 11:16
Published on Care Opinion at 12:18

Hi Montysmrs.

Thank you so much for sharing your experience. I am Sorry to hear that your experience was not a positive one. As a team we are here to support you in anyway that we can. It is clear like this is has not happened for yourself.

If you would like to contact myself to discuss your experience further I would be more than happy to facilitate this. I fully understand if this is something you don't feel you can do just now but maybe in the future.

I am grateful that Murdina our Lead Cancer Nurse for Fife has addressed your feedback and has responded to you.

Please don't hesitate to get in touch. I wish you all the best going forward.

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful
Opinions
Next Response j
Previous Response k