Sophie, Author At MDS UK Patient Support Group

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Essex MDS UK Patient Support Group

Posted on 28/05/2019 at 1:23 pm.

Written by sophie

MDS UK Patient Support Group (Oxford)

Posted on 24/05/2019 at 6:19 pm.

Written by sophie

The Oxford group was started in 2011 by the myeloid team at the Churchill Hospital, with the enthusiastic support of leading AML/MDS specialist, Professor Paresh Vyas. Prior to Covid, meetings were held every 3 months in the Maggie’s centre in Oxford. Since Covid, meetings have moved online via Zoom. They are still facilitated by the same Local Patient Support Ambassador, Claudia Richards - but as they are all online, meetings are open to all members Nationwide.

Come and join us at our next Zoom meeting, you'd be very welcome. For more information and dates of meetings, please email Claudia Richards oxfordgroup@mdspatientsupport.org.uk

I felt very alone when I first received my diagnosis. The meetings have helped me learn more about MDS and meet others with the same condition but different experiences.

My introduction to the Oxford Support Group was prevaricated. I had seen posters within the Churchill Hospital, had pledged to go, but had then missed the dates. I already attended "Maggies" Oxford and was benefitting from being with other cancer survivors.

Having joined MDS UK I finally met with the Oxford Support Group and was able to be with others who also had been diagnosed with the same condition as myself, albeit with many variations. I had found the illness a somewhat lonely experience and the sharing was a great counterbalance.

Claudia, the group co-ordinator, brought to the meeting news and views from afar, and, at later meetings, Kirsty, the specialist nurse and a mine of information, was able to answer members’ questions in a full and easy to understand manner.

There are exciting plans for the next meeting and, as usual, I am looking forward to it.

I have had Non-Hodgkins Lymphoma for 17 Years and in March 2017 I was told by my Haematologist that it had developed into MDS. Although I received a good explanation medically, I was still very unsure about future treatments. I attended the Maggie Centre at the Churchill Hospital in May 2017, and heard about the MDS Patient Support Group. Maggie’s is a lovely building and has a very relaxing, non-clinical feel. On 23 June my wife and I attended the MDS group's bi-monthly meeting. We were able to discuss MDS and its treatment with 12 other patients. Everyone there has a different form of MDS or were at different stages of treatment. It gave my wife and myself great confidence in the future and we gained loads of knowledge.

We also had a presentation by an advanced nurse practitioner, who explained the various blood readings and their implications. This was extremely useful for the future. Our next meeting is on 29 September at the John Radcliffe where latest developments in MDS research will be explained and we will be able to tour the Haematology Lab. We look forward to it and meeting with fellow patients again.

I joined the Group when it was first formed, or shortly afterwards, by one of the Research Nurses working with Prof Vyas. In those days, we met in one of the lecture rooms at the Churchill Hospital. I don't remember very much about the early meetings: I hadn't been diagnosed with MDS very long, but had been referred to the Churchill and was on a clinical trial.

After a time we had to move out of the lecture rooms and start using a portacabin, with an occasional social get-together in a pub! For various reasons, the numbers attending the meetings dwindled and we struggled to remain in existence. But we did, thanks to Claudia, who had taken on the role of co-ordinator. During this time, we could see some building work in progress, which was most intriguing as there was no indication of its purpose. However, it turned out to be a Maggie Centre and this became the new home for our meetings!
At these meetings we are able to talk to each other about MDS and our treatment experiences – as most of us have a different Syndrome - and support one other in a sympathetic way. Maggie’s provides very comfortable meeting rooms and the volunteer staff are all very welcoming, greatly contributing to making our meetings a pleasant and helpful experience.

The group is very much revitalised and membership has increased thanks to Claudia's efforts, and to Kirsty, our very knowledgeable clinical lead and her informative talks. Kirsty is also able to arrange for members of the Churchill's staff to talk to us on subjects of interest. Particularly interesting will be the upcoming visit to the Research Lab.

Bournemouth Local MDS Patient Support Group

Posted on 02/05/2019 at 6:38 pm.

Written by sophie

Patients in the Wessex region can also benefit from additional complementary treatments 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.

A New Edition of the MDS Patient Handbook is out!

Posted on 27/03/2019 at 6:06 pm.

Written by sophie

Being diagnosed with myelodysplastic syndrome (MDS) can be a shock, particularly when you may never have heard of it.

MDS UK has now produced a new edition of the MDS patient booklet, created in cooperation with our colleagues from Leukaemia Care and Bloodwise.

At MDS UK, we felt there was an urgent need to revise the existing information material. We wanted to ensure that as many patients as possible would benefit from this in-depth booklet, and hence asked those two great organisations to join us in this project. It is highly necessary and beneficial to all patient groups to work together whenever possible, and save valuable funds that way.

This booklet has been written by Dr Sally Killick, Consultant Haematologist; Dr Dominic Culligan, Consultant Haematologist; Philip Alexander, Counsellor and Cognitive Behaviour Psychotherapist; Geke Ong and Janet Hayden, Clinical Nurse Specialists; and peer reviewed by Professor David Bowen, Honorary Professor of Myeloid Leukaemia Studies and Consultant Haematologist, St James’s Institute of Oncology. The booklet has also been reviewed by patients and we are grateful to Chris Dugmore and Claudia Richards for their valuable contribution.

The booklet has been written to help you understand more about MDS. It describes what they are, how they are diagnosed and treated and also the expected outcome (prognosis). It also provides information on coping with the emotional impact of an MDS diagnosis.

Make Blood Cancer Visible 2018 coverage from Manchester

Posted on 18/09/2018 at 6:00 pm.

Written by sophie

Make Blood Cancer Visible 2018 Installation

The pharmaceutical company Janssen has put together an amazing installation of transparent, motion-activated human figures which creatively represent the ‘unseen’ or invisible nature of blood cancer. The figures share real-life stories from people with blood cancer, in their own voices, encouraging passers-by to listen to their experiences and to show their support for the campaign.

Hear below the voices of real patients, taken from the audio on the exhibits:

Sandy: Blood cancer is very hard, I find it hard to describe both to myself and to my friends and family.

Carmen: I look okay to the outside world, but in the inside my body is trying to kill me. Just because I look good today and I feel fine doesn’t mean I'm okay.

Debbie: I avoided going to the doctors. I'd got the symptoms and I knew there was something wrong, I just put it off.

Claudia: Even now nine years later, the enormity of a very uncertain future can be quite overwhelming.

Debbie: I always thought I was a strong person anyway, but I think now I really know what strong is.

Carmen: And I think our bodies are really powerful. In some way they will find, if you're really lucky, a way of regenerating, so I'm really lucky that I'm in remission now.

Debbie: I discovered that the more I shared the better I felt.

Take a look at the many photos and reactions of the public to this exhibit – and read all about the launch of the campaign on the London

Oral Azacitidine Plus Best Supportive Care

Posted on 21/08/2018 at 7:09 pm.

Written by sophie

Sharon Berger Transplant Update

Posted on 28/07/2016 at 12:00 am.

Written by sophie

Sharon Berger, who celebrated her 65th birthday only a few weeks ago, has received devastating news when a routine blood test showed that, after three years, her leukemia has returned.

Sharon needs now a new stem cell donor. A suitable donor will most likely be someone with Ashkenazi Jewish heritage, so Anthony Nolan is calling for donors from this community:

4th May 2013

Wonderful news - a donor was finally found for Sharon Berger who has been waiting since December for a transplant.
We wish Sharon all the best with the transplant ahead and hope she will recover from it as quickly as possible.

Her family and Anthony Nolan have done amazing work on getting more people from Jewish origin to register to donate stem cells.

Thanks to all of the people who have participated in raising awareness about this - and especially to those who registered.

Jonni - her son added:
"Very pleased to have reached a major turning point in our #Spit4Mum campaign as a good stem cell match has been identified & Mum is scheduled to have the transplant in a couple of weeks, all being well. Still a long road but a massive thank you to everyone who has helped get us to here, couldn't have done it without you.

We also thank Anthony Nolan and Delete Blood Cancer for their amazing tireless work and support.
And we wish Sharon all the best with the transplant ahead now."

Anthony Nolan posted the news on their website - saying:
"The Bergers’ campaign had a huge impact on the number of people joining the bone marrow register. The campaign has so far attracted 1,191 Jewish people to join Anthony Nolan’s donor register, compared to 107 in the same period in 2012.

‘We are so grateful for every single person who has joined the register as a result of our campaign and all those who have helped in other ways. There are still people who are waiting for a match and we want more people who have been inspired by our story to join the bone marrow register.’

Ann O’Leary, Head of Register Development at Anthony Nolan, says, ‘We are absolutely delighted that Sharon has found a suitable bone marrow donor and we wish her all the best with her transplant. The ‘spit4mum’ campaign has attracted a record number of Jewish people to join Anthony Nolan’s bone marrow register. This will help us to find suitable donors for more blood cancer patients in the future. This is one of the biggest patient appeals we have had and will have a huge impact on the register in terms of the number of potential Jewish donors.’

Further news were published in the Jewish Chronicle - as well as the blog in Jewish mother

http://thejewishmother.co.uk/a-match-has-been-found-for-spit4mum/

As a reminder: There are 2 donor registration charities which the Bergers have been working with and you can contact them to receive a kit in the post which will enable you to join the register, full details regarding eligibility etc on their websites:

If you are under 31, you can #Spit4Mum with Anthony Nolan (http://www.anthonynolan.org/Spit)

If you are 31-55 you can #Swab4Mum with Delete Blood Cancer (http://is.gd/Swab4Mum)

Her son Jonni also connected with the Waitrose branch of Brent Cross to start one of their Community Matters donation scheme.
More details on our Fundraising page: https://mdspatientsupport.org.uk/fund-raising-2/corporate-fundrasing/

MDS patients and carers attend parliamentary reception for Cancer52

Posted on 18/05/2016 at 8:18 pm.

Written by sophie

Prof Rodney Taylor is Chairman of MDS UK, an MDS patient himself, has experienced a number of MDS treatments (supportive care, transfusions, an MDS specific drug) over the course of 5-6 years. A year ago, when he stopped responding to a life extending drug azacitidine, he had to resort to a stem cell transplant at age 71. His wife and carer, Dr Janet Taylor accompanied him. They met with their MP Dr Tania Mathias.

Reverend Kes Grant, was diagnosed with MDS 16 years ago, at age 35. Following a gradual but serious deterioration of her health and quality of life, she too is now facing the prospect of a stem cell transplant. A treatment she is not looking forward to, as outcomes vary greatly and carry a good deal of uncertainty. Kes recently had to give up her work as a school chaplain, due to MDS, despite trying very hard to still work part-time. This has been devastating for her. Kes attended with her partner and carer Maggie Buckley. They met with their MP Matthew Pennycock.

Leanne Tilbrook, a very young MDS patients (typical age at diagnosis is 71yrs old), needs a transplant soon. She attended with her father Steve Tilbrook – who has been supporting MDS UK for a long time.
Neil Harrap very sadly lost his wife Julie to MDS two years ago, following complications of her stem cell transplant. He has now vowed to help raise awareness of the disease with MDS UK.

MDS UK members and their MP’s were briefed on the number of people diagnosed with rare and less common cancers in their area.

Rodney Taylor said, “It was a pleasure to join Cancer52 at their reception and discuss such an important issue. We need to be doing far better at diagnosing, referring and treating cancers earlier, particularly rare and less common cancers. Access to innovative treatments need to be much improved too.”

Dr Tania Mathias MP said “A privilege to meet patient-expert and constituent Prof Taylor: excellent action points concerning rare cancers.”

Useful links:
For more information about MDS UK please visit www.mdspatientsupport.org.uk
For more information about Cancer52 please visit: http://www.cancer52.org.uk/.

The All-Party Parliamentary Group on Cancer is the voice of the cancer community in Parliament, raising cancer at every opportunity, including on the Floor of the House and in meetings with Ministers and others.
The Cancer Strategy (Achieving world-class cancer outcomes: a strategy for England 2015-2020) was published in July 2015

Nurses’ Day – 12 May 2016 – Kes Grant’s Thank You

Posted on 18/05/2016 at 7:06 pm.

Written by sophie

Nurses Day

Nurses’ Day takes place on 12th of May each year, on the anniversary of Florence Nightingale’s birth.

It’s a chance to celebrate the remarkable difference nursing staff around the world make every day. It’s also a time for patients to thank nursing staff for their dedication and care.

This year we've taken the opportunity to thank all fantastic haematology nurses and CNS's through our Facebook page. Patients also shared their story and say thank you for the support the nurses provide, often in very difficult circumstances, on the Royal College of Nurses website. One of these moving stories was Kes's.

Kes Grants's Thank You

"16 years ago I was diagnosed with a rare blood cancer called Myelodysplastic Syndrome or MDS. MDS is incredibly debilitating – I live in almost constant pain, and part of the disease causes my joints to swell up and my hair to fall out."

"Despite the challenges I face every day, I still feel inspired to talk about my MDS, to share experiences with newly diagnosed patients and to let them know that life is worth living.

"Part of the reason for this is my Clinical Nurse Specialist (CNS), Geke. She has been a rock from the very beginning.

"Three times a year we visit a patient support group at King’s College Hospital in London. At times we deliver talks together on coping with fatigue and the demands of a fluctuating condition.

"I hope our unique double act encourages others to seek help, and in particular the support of a CNS, because Geke is truly my safety net.

"While MDS affects me every day, I know the nature of the condition makes Geke’s job difficult too. Patients get very poorly and die but Geke still invests her time and energy to make every single person feel special.

"I know there are challenges ahead for me. I’m losing my mobility and with it, my independence, and I’ll need a transplant soon. But no matter what MDS throws at me, I know Geke will be there to reassure me.

"My message to Geke this Nurses’ Day can be summed up in a single quote:

Apply to review Cancer Research UK research centres

Posted on 18/05/2016 at 6:54 pm.

Written by sophie

Cancer Research UK are recruiting a patient panel to review their research centres and you can apply to be a member.

Cancer Research UK funds 18 experimental cancer medicine centres and gives support to 15 more research centres across the UK. These centres are essential to beating cancer sooner.

All of these centres will apply for five years funding. The applications are going to be reviewed by an expert committee. But they also want people affected by cancer to provide feedback on the centres, so they are creating a Patient Panel.

If you apply to be in the Patient Panel:

You will review applications and send your comments
You will be attending a Patient Panel meeting in London.
You will be discussing and scoring each application together with the other members of the Panel.

Do you have a keen interest in research?
Are you willing to read information to develop your understanding the work of Cancer Research UK and the four UK Health Departments?
If you are please apply to take part in the panel.

To apply please email involvement@cancer.org.uk to request an application form and return it before 17th June 2016

Read the full article here.

Essex MDS UK Patient Support Group Meeting - 23 attendees!

Meeting on October 25: MDS World Awareness Day!

Come along and share your questions and experience.

Friends and family members are also invited

Other ways of meeting and sharing experiences

Try our newly upgraded Chat Forum!

Leave a message in one of the folders, ask a question, respond to a message that’s already there or just say hi! (The messages can be read by anyone as a guest user. If you want to respond or write a message you will have to register.)

Patients' Stories: Anna

Patients' Stories: Emma

Christina's Tips to Keep Positive

Bone Marrow Transplant Blogs

Come along and share your questions and experience.

Friends and family members are also invited

What people say about the Oxford MDS UK Patient Support Group

Other ways of meeting and sharing experiences

Try our newly upgraded Chat Forum!

Leave a message in one of the folders, ask a question, respond to a message that’s already there or just say hi! (The messages can be read by anyone as a guest user. If you want to respond or write a message you will have to register.)

Patients' Stories: Anna

Patients' Stories: Emma

Christina's Tips to Keep Positive

Bone Marrow Transplant Blogs

Come and share your questions and experience

Friends and family members are also invited

Meeting Notes 28/02/2018

What happened in the meeting? Catch up here

Meeting agenda:

Patients' Stories: Anna

Patients' Stories: Emma

Christina's Tips to Keep Positive

Bone Marrow Transplant Blogs

MDS UK Online Forum

The messages can be read by anyone as a guest user. If you wish to respond or write a message you have to register

New Edition! Learn more about MDS with Our MDS Patient Handbook

Latest News

“The Make Blood Cancer Visible campaign, this week was set up in Manchester From the 17th – 22th Sept

Photos from the Manchester Installation

Latest News

*SUSPENDED*

Nurses Day

Kes Grants's Thank You

"What we have done for ourselves dies with us.

What we have done for others and the world remains and is immortal."

To apply please email involvement@cancer.org.uk to request an application form and return it before 17th June 2016

SUSPENDED