The National Non-Hodgkin Lymphoma Audit (NNHLA) project team is pleased to support Blood Cancer Awareness Month (#BCAM). This is an online campaign which takes place every September, which aims to raise the profile of blood cancers; which includes non-Hodgkin lymphoma.
Please support us in raising awareness by ‘following’, ‘liking’, ‘commenting’ and ‘resharing’ our social media posts throughout September, on our NNHLA LinkedIn and Bluesky channels.
We will be including the voices of those with lived experience of non-Hodgkin lymphoma to our posts (some of which we share below). Thank you to everyone who kindly contributed to these.
Patient Voice: Pam’s experience
“My own experience was that I was diagnosed with splenic marginal zone lymphoma in July 2023 after having a hip replacement pre-operation, full blood count.
The initial shock took some time to come to terms with and, since then, I’ve been on active monitoring. This has been a continuing emotional rollercoaster mostly because of the apprehension leading up to the next blood test/CT and the fluctuations in the results.
Over time, it has got easier because I now understand how much my results can fluctuate, both up and down – and I now compare it to stock market fluctuations!
As a patient representative, I have been pleased to share my experience and insights, in supporting the work of the National Non-Hodgkin Lymphoma Audit (NNHLA) team, and the national charity, Lymphoma Action, in their shared goals to improve care and outcomes for patients and their families”.
Pam, NNHLA Patient and Public Involvement representative
Clinical Voice: Christina
“Lymphoma is the most common blood cancer, yet many people do not realise it is a blood cancer.
During Blood Cancer Awareness Month, we have an opportunity to raise awareness, improve understanding, and shine a light on diseases that are too often overlooked.
By recognising symptoms earlier and increasing access to support, we can help improve outcomes for those affected by lymphoma.
I am proud to see the incredible work being done to transform lymphoma care and improve patients’ experiences across the UK.
Remember, this September, think blood cancer. Think lymphoma”.
Christina, Macmillan Clinical Nurse Specialist & NNHLA Clinical Reference Group member
Patient Voice: Frank’s experience
“I was treated for a form of slow growing NHL in 2018. My disease had reached stage 4 and had spread. My consultant explained that I would not be able to start chemotherapy straight away as it was essential for several issues to be tackled first.
This was a worrying time, but communication was first rate and helped me to understand what the situation was, the steps we were going to take and what the outcomes were likely to be. I felt I was in good hands, and I quickly developed confidence and trust in my team.
My case was discussed at an MDT meeting, attended by clinicians from several different departments. I was impressed by the close coordination and teamwork shown by all of those who helped in those initial stages.
There were no unnecessary delays, but as I needed several procedures it meant that I did not start chemotherapy within the standard 62-day period.
I was introduced to my CNS early in the process and we met regularly. She was an invaluable source of information about lymphoma and someone I could confide in if I had any concerns. Eight years later we remain in touch.
I finished my course of chemotherapy in early 2019 and this was followed by 2 years of maintenance immunotherapy. I coped well with the chemotherapy and had no serious side effects, either during the treatment or while I was recovering.
I made a full recovery and have been well since.”
Frank, NNHLA Patient and Public Involvement Forum Chair