Rare cancer support group a sanctuary for sufferers
FOR many people currently fighting the effects of cancer, there are a number of groups to offer support. But in terms of a rare blood disease called myeloma, Burton and South Derbyshire has been left short for people needing help — until now.
Reporter ROB SMYTH went along to meet Michelle and Phil McCartney as they embark on a journey to start a group which will bring together people with the disorder.
TO get to the room where the Burton Myeloma Group holds its sessions, you have to walk through an area where cancer sufferers sit while they receive chemotherapy treatment for their various types of the disease.
Men and women, young and old, sit in comfy chairs as they undertake treatments in their efforts to beat cancer.
This is a sight which will hit home with anyone and is a haunting way of setting the scene before the group’s session begins.
“My husband was diagnosed seven years ago when he was 30 years old,” Michelle McCartney told me as we sat down to talk.
She began the myeloma support group in Burton after finding that there were no groups already in existence and also to give something back to others and bring sufferers together.
She said: “This type of cancer is very rare and I have been fund-raising for Myeloma UK for some time.
“There was no support group in Burton. There is one in Derby, but I wanted to set one up for people here.
“After talking with the people at Myeloma UK, we decided to try to set up this group and see what kind of response we would get.”
Myeloma, also known as multiple myeloma, is a type of cancer arising from plasma cells which are found in bone marrow.
This disorder impacts on the production of antibodies and reduces the body’s ability to fight infection.
Mrs McCartney, who lives with her husband in Newhall, added: “One thing we would like to stress is that this is not just for people who are suffering from this disease.
“It is for family, friends, carers and people who will be directly impacted by this — people do not realise how much of an effect this can have on such a large number of people.”
The group was primarily set up to offer better resources and, despite still being in its infancy, has already gained a loyal membership.
“We have now held a few meetings and have had a better than an expected response and we are so grateful,” Mrs McCartney said.
“We have people of all ages from all different walks of life coming together to share their own stories.
“We have had people who are old and not had treatment and young who are currently going through treatment.
“We have people who have gone through certain treatments and can pass on what they know to others who are set to go through it or may do in the future.
“It allows people to know what to expect — and not just sufferers.
“People like me who can find out how things will change in the future, what I may have to do — it is nice to have an indication.”
Her husband Phil is now 37 years old and has lived with the disease for more than seven years.
He said: “I didn’t know a lot at the start and didn’t have a group like this — which is of great help to me even now and hopefully will be to many others.
“Talking helps me the most. I want to share experiences and learn stuff that hasn’t happened yet and could happen.
“This is an open and friendly group, one where people are free to talk about what they want.
“We want this to evolve and be what the group members want it to be.
“After everything I have been through and also after all the help from Myeloma UK, it is great to be able to start giving a little something back.
“They have been great and if this helps, even just a little, then that is wonderful.
“When I was first diagnosed I did what many do — go online and have a look at anything and everything.
“There is no definitive answer as to how long I will survive the condition but I estimated between five to seven years from what I had seen and heard.
“But this group has allowed me to meet people who have had it for 20 years — it is a real boost and makes me think that if they can do it, then why can’t I?
“The group also allows for the discussion of new treatments, research and the latest information.
“We can share this with others who might not know about it and it could go on to help them.”
Mrs McCartney added: “We have had a couple of guest speakers so far talking about physiotherapy and also about the services that Burton’s Queen’s Hospital offers.
“It is great to let people know what to expect and what they might go through.
It is better to be prepared rather than receive a shock.”
With an ever-growing membership, and a form of cancer that is less well known and not as well supported, the group which supports myeloma sufferers in Burton and South Derbyshire will no doubt only continue to grow from strength to strength.
Witnessing people receiving cancer treatments, refusing to let go and fighting to the last shows just why groups like this one are much needed.
A vital resource and, most importantly, a sanctuary where people affected by the disease, in whatever form, can escape, converse and learn from others like them.
As I walked out of the hospital’s revolving doors, I realised that despite what some would glibly describe as just another group for the sick, what Michelle and Phil have set up is a shining example of how a devastating illness can bring people together.
