My involvement with the Support Group began after my husband Doug, had been diagnosed with a brain tumour in December 2008. He was keen to join the group and during both his radiotherapy and chemotherapy, we attended the group which was then held in Haywards Heath.
At the monthly clinics we attended we usually met Charlotte and Gary, who also came to the group and we used to go out for lunch together after our appointments. The friendship Charlotte and I have started then, and continued throughout Doug and Charlottes treatments.
Sadly Doug lost his battle in 2010, but I continued to attend the support group to keep up with the friends we had made.
I was diagnosed with an Astrocytoma brain tumour in February 2009 and started going to the support group shortly afterwards. I had an awake craniotomy in March 2010 followed by a daily dose of radiotherapy for 6 weeks and several cycles of chemotherapy. Following all of my treatments I had 3 monthly checkups which have gradually increased to 6 months and now are yearly.
I have been in post as Macmillan Neuro- oncology Clinical Nurse Specialist since 2006 and have been involved with the Support group since then. I help to support people with primary malignant brain tumours but also meet others who have radiotherapy or chemotherapy treatment in Brighton. I work closely with Ruth Smith and the Neuro team including Neurosurgeons, Oncologists and Radiologists. The Support group has always been friendly, supportive and inclusive but also, because of Jill and Charlotte`s links with patient improvement, proactive in trying to provide a source of information for the people that come to the meetings. The group`s involvement in helping us to develop our service further is always very much appreciated. Ruth and I try to attend meetings quite regularly throughout the year.
I started in post as a Neuro Clinical Nurse Specialist in September 2017 and I am new to both the role and the support group. Previously I have worked in a Neuro Intensive care unit as well as in Neuro Rehab. I help to support people with Low grade Brain tumours and work closely with Gill Walsh ,with patients also undergoing radiotherapy and Chemotherapy, and an extensive Neuro team. The support group is very friendly and welcoming and I look forward to attending the group frequently throughout the year.
OUR INVOLVEMENT WITH THE GROUP
Mike Brookes had been running the group for many years and in 2011 he decided to retire and Charlotte and I took over the running of it. We felt that with a patient and a carer, we would be able to support, empathise and provide a meeting place for others diagnosed with a brain tumour.
Now that all neuro surgery has been moved to the Royal Sussex County hospital from Hurstwood Park, we felt it appropriate to start a new group, Bright Sparks, at the Macmillan Horizon Centre in Brighton, and this has been running since January. So far we have chatted and encouraged each other to share experiences and friendships are beginning. In the future we will be able to arrange speakers and various themes for our meetings, sometimes based on medical issues but others purely as a social group.