Did you know we run a Mesothelioma support group for patients and carers? Read on to find out more, see what happens at the meetings and what others have to say about them. To join the mailing list, email supportgroup@asbestossupportce.org
What: enjoy refreshments, meet others, talk to nurses and hear from guest speakers, including talks on stress management, medical trials, mindfulness, diet, breathlessness, exercise, legal advice and palliative care, to name a few.
When: Every second Monday of the month, 11am
Where: 9th Floor, Colmore Building, 20 Colmore Circus Queensway, Colmore Row, Birmingham B4 6AH. Nearest car park: B4 Car Park, Weaman Street, Birmingham B4 6DG. Close to Snow Hill station, and a 10-minute walk from New Street station.
Or join online, just email supportgroup@asbestossupportce.org to ask for the link.
Our service users say:
“I joined the group in February 2021 and the information I gained from speakers and mesothelioma nurses was priceless and reassuring. The support I received from fellow sufferers was inspirational. The group has helped me keep a positive outlook, at a negative time in my life.” – Bev.
“I joined the group in August 2022. Being diagnosed wasn’t good, but instead of shutting down, I wanted to find out more. The group gives you not only the opportunity to listen to more information but to befriend others going through the same thing. We are not about doom and gloom but about listening to each other, learning and helping each other as best we can, especially when we may be going through a hard time. My husband, who attends every session, says that it has helped him too.” – Helen
When first diagnosed I was very averse to joining a support group as I thought “I have this awful disease, it is what it is, what could they possibly do for me.” Anyway, after receiving immediate support from ASCE and Mesothelioma UK at a time when I didn’t know what to do, I thought I ought to see what they were all about. I went to my first meeting over 2 years ago at a time when I thought my life was over and I was just waiting for the inevitable. Did I want to meet others who were on this same train to nowhere? As it happened, I was surprised at the amount of positivity in this small group, especially from the health professionals who were giving their time freely. Yes, there was some negativity of course, as I learned of the experiences of others on the same journey but it was inspiring to hear about how other people were getting on with the time they have; holidays, families, getting out and about, etc. On top of this you may learn about developments in drugs and treatments, and occasionally, opportunities for inclusion in trials. We do give updates on our personal symptoms but if you don’t wish to do this you just opt out. On the other side of the coin, there is the social side to the group that involves us sufferers, partners, health care professionals, charity representatives and Irwin Mitchell who kindly supply the venue and even provide us with refreshments. Come along to a meeting, if it’s not for you that’s fine, no one will pressure you into coming back. Mesothelioma is a bumpy journey, you don’t have to take it on your own.” – Reg
If you’d like to chat to someone to find out more, please give us a call on 0121 678 8853.
“My name is Jan Sweet. I’m a Macmillan Lung Cancer Nurse Specialist from Shrewsbury and I’ve recently been appointed as affiliate nurse with Mesothelioma UK. I’ve always had a strong interest in mesothelioma and was proud to be part of the original steering group that set up the Central England Mesothelioma Support Group. It’s been wonderful to see how valuable this group has become over the years. What stands out most to me is seeing people share their own mesothelioma journeys. That kind of sharing is incredibly powerful— it supports other patients, families, and carers in ways that professionals alone simply can’t. I honestly don’t think I’ve ever met such a proactive, positive group of people, there’s often a lot of laughter. If you’re thinking about getting involved in the support group, I wholeheartedly encourage you to take that step. It’s a warm, welcoming space where you’ll find not just information and support, but genuine connection, shared strength, and even moments of joy. You won’t be alone, you’ll be in very good company.”
Got a question about mesothelioma? You can email Jan for more information: jan.sweet@nhs.net
The history of the group by Sophie Phillips, retired Lung Cancer Nurse Specialist
The idea for a mesothelioma support group came about at one of the bi-annual West Midlands Lung Cancer nurse meetings. A group of lung cancer nurses (LCN) felt that Mesothelioma was a very individual cancer with special needs. Mesothelioma is typically grouped with lung cancer but is very different and the idea of a Meso support group was born.
We (LCN’s) set up a meeting with Lorraine Creech who was then head of nursing at Mesothelioma UK and Doug Jewell who was the manager at Asbestos Support Central England (ASCE) at that time. Doug said he could offer funding for a venue to meet and the nurses would arrange speakers. We opted to not call it a support group but called it ‘Coffee, Cake and Information for life’.
The first few meetings were held at St Martins in the Bullring and each meeting was attended by 4/5 LCN’s, Doug and Lorraine and were extremely well attended. We then moved to ASCE offices as the cost of the church went up and ASCE staff were also able to join us too. Attendance was excellent and I think the numbers were good because there was a big involvement from the LCN’s and ASCE were also advertising the meetings to clients when they met them.
Then Covid hit at the same time as I started as Mesothelioma UK nurse 2 days a week. I managed to continue monthly meetings virtually and Neil started as new manager at ASCE at that time. Numbers did drop off then understandably. Bev joined at this point and I think maybe Helen too. We delayed face-to-face meetings for quite some time as people were vulnerable and nervous. ASCE was also hit financially from Covid so money was tight. Alida at Irwin Mitchell offered their office space at no cost and we started meetings there in September 2022.