Southampton MDS Patient Support Group
24 Sep. 2017Location:
NOVOTEL SOUTHAMPTON,
1 West Quay Road,
Southampton SO15 1RA
Come and share your questions and experience
Friends and family members are also invited
Our Southampton Group is taking shape!
We are very grateful to volunteers Andy Scott and Philip Dinn who are assisting MDS UK with the running of this new local group. We are looking for 2-3 more people to assist – so please do contact us if you’d like to help out for our 3 meetings per year.
To date, meetings were taking place in the Novotel by the train station, but we are also looking for a permanent meeting location for this group – and will be posting details on our website soon.
We are also extremely grateful to Southampton clinical staff – CNS Dawn Cousins, Dr Chris Dalley and Dr Srinivasan Narayanan who will continue to be regular contributors to this local group.
Southampton Local Group meeting - 26th February 2020
Local team:
Andy Scott, coordinator (and carer)
Philip Dinn, coordinator (and patient)
Clinical team:
Dawn Cousins, CNS
Alison Lyons, CNS
Dr Chris Dalley
Dr Srini Narayanan
Our renewed thanks to coordinators and staff for making this group possible.
And congratulations to all involved and attending for creating a very helpful, inviting, honest and warm atmosphere.
Please attend this group and tell your clinical staff about it, so that other patients may benefit as well.
Philip Dinn's Story - Group Coordinator and Patient
In March 2017 I had a routine blood test for diet-controlled Type 2 diabetes. The result was a shock as it revealed that I was neutropenic. A very rapid referral to Southampton Hospital and a bone marrow biopsy confirmed the worst. Luckily for me It Dr Chris Dalley who made the prognosis and offered me the chance of a cure with a stem cell transplant. It all happened so fast that I really did not understand what was happening other than it was totally out of my control and I guess I was resigned to that.
I had been given information on MDS UK Patient Support, but I was signed up to trail AML18 and in hospital for my first round of chemotherapy before I had any chance to understand what was on offer.
On reflection that was when we needed to hear stories of other patients. The professional medical staff were wonderful, and I was building up a library of information on the various drugs that were being used but I still lacked any contact with other MDS patients, or my wife Fiona with any other carers.
By the time I had my second round of chemotherapy I was more aware of the work carried out by Sophie and the whole team, and a donor had been identified. So after successful remission of the original problem then I was all set for the stem cell transplant when an infection became evident that manifested itself as a cyst in my liver. So, it was back into hospital my third prolonged stay. Further treatment continued at home, but it was not until June of this year that everything came together, and I had my stem cell transplant.
My only regret was that it took me so long to understand the full support on offer from MDS UK, but, now that I have, I hope that I can help to help others.
Photo of our local group in Southampton at the meeting on the 10th Oct 2018
Patients in the Wessex region can also benefit from additional support and services, provided free of charge by the Wessex Cancer Trust.
At all of our free Cancer Support Centres, clients are welcomed by our volunteer befrienders who are equipped to provide information, support and a listening ear. Our team of specialist counsellors are there to help deal with the emotional impact of cancer and our complementary therapists aim to improve well-being, help with pain management and increase self-confidence.
