Suzanne Beattie
Posted by
Suzanne Beattie

Patient Experience: Louise MacLeod

Suzanne Beattie
Posted by
Suzanne Beattie
30 May 2014

Louise MacLeod talks about treatment, volunteering for Bloodwise, and the invaluable support she's had from her nursing team throughout.

How have you been affected by blood cancer? Tell us your story.

I was diagnosed with Hodgkin Lymphoma in Feb 2012 after 11 months undiagnosed by GP’s. I required 19 months treatment including 4 different chemo regimes, ABVD, BEACOPP, ESHAP, mini BEAM, A monoclonal antibody Brentuximab, Radiotherapy and a reduced intensity Allograft with my brother’s stem cells in September 2013. I was told I was cured March 2017.

 

How has your treatment team been helpful for you?

My CNS was central to my support, especially at my local hospital Huddersfield Royal Infirmary, as well as an excellent consultant who was led by a team at Jimmys Hematology in Leeds before my treatment was transferred to Leeds. I now have an excellent CNS who I see for all my check ups but is available by email at any point when I need her.

My first CNS effectively was my psychological help, I could talk things through with her and come to terms with my diagnosis, she made it all very approachable. My transplant CNS who I'm still under gives me very easy access to the info and help I need and I don't have to bother the consultants or go through receptionists. I can send her a quick email and knowing that support is so easily accessible gives me so much peace of mind.

They made my whole experience far more human, the support I had from nurses helped me get through the scary aspects of treatment.

 

Is there any other support you would have liked from your treatment team?

The biggest thing we lacked in hindsight was advice and support for my young children but I'm not sure this is the CNS's responsibility, but it would help if they could sign post for this.

 

What’s your role as an Ambassador for Bloodwise, why did you decide to do this role, and what do you enjoy most?

We began to fundraise for LLR during my treatment as we wanted to give something back and were becoming aware how important research was in the options being offered to me and ultimately my survival & recovery. I accepted the role after being involved via social media and The LLR north team prior to the Bloodwise ambassador role development. I'm keen to help spread awareness of blood cancer and continue to fundraise as well as encourage fundraising for the charity. The part I enjoy most about being an Ambassador is meeting other ambassadors and being involved in the Bloodwise campaigns.

 

How has engaging with Bloodwise helped you?

I feel I am making good of my illness and giving something back, I don't think I could ignore what I've experienced and I feel blood cancer is now an integral part of my life, more than enough to be able to fulfil this opportunity.

 

Finally, is there something you would like to see Bloodwise do in the future (for nurses or for patients)?

Recognition awards for nurses, although I'm sure us patients feel we all would reward our own specific nurses.

I would also like more knowledge amongst the Haematology nurses that signpost patients to Bloodwise so we can spread awareness of the charity.