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Existing Macmillan user? Access your events, volunteering and Macmillan Online Community
This is where you can find out about all the amazing things going on in the Online Community. It's where you'll find news about events and awareness months; ways to get involved with Macmillan and up-to-date campaigning news from Macmillan HQ.
Here on the Community News Blog we want to showcase just how much support, friendship and kindness is shared on this site every single day. To try and shine a light on this we are starting a new series called ‘what the Community means to me…’ which looks at some of our member’s stories, how they came to find the Community and what it means to them to be on the site. In our first volume today tvman shares his story, why not take a moment to read through?
Tvman about to plant bulbs with his grandson and wife watching.
Tvman’s story I was diagnosed with Myelodysplasia (MDS) in March 2015. This diagnosis followed a period of time that my haemaglobin level was up, it was down but the general trend was downward. So in February 2015 I underwent a bone marrow examination. Getting the sample taken was very painful.
In March at my next meeting, the Haematologist wrote his diagnosis down on a piece of paper and slid it across the table and advised me to go home and look it up. Sounds a strange way to tell someone but we had become friends over the many meetings we had over the years we knew each other because he had been treating me for a blood condition called haemachromatosis.
I think he informed my wife and me in that fashion because he was emotional and found telling me vocally was difficult for him. Myelodysplasia is an incurable blood cancer that can be static for months or years but then suddenly become an agressive leukemia and that's when it becomes a fatal illness.
I have been able to discover a lot about my cancer, there can be a chance for a bone marrow transplant but when I asked about that to one of the doctors at the cancer unit, she told me that the operation would kill me.
Unfortunately I have heart disease, I suffered a heart attack 7 years ago, and had surgery a few months later. There are other arteries in poor condition, hence the heart disease diagnosis. I am a wheelchair user due to a spinal condition that developed four years ago, leading to me having had to halt a job that I had done for 35 years. I have been told I won't be operated on because there would be no benefit. I also have a few other ailments but they're not so serious. In September last year I had a small stroke and had to be hospitalised for a week.
Having the cancer and the spinal diagnoses within 3 months of each other hit me like a thunderbolt from above. I didn't know what way to turn. I spend many hours at home alone suffering much pain in my back and legs and arms because I have nerves trapped and I also have osteoporosis and osteoarthritis of the lower spine.
Of course I was aware of MacMillan, who isn't, and following a promotional article about Move More in my local paper, I joined up and now every Tuesday I spend time exercising muscles, use it or lose it!
I am an avid gardener, however it is much more difficult now as I am in the wheelchair. I have plans though to erect a 25ft by 14ft polytunnel and to dismantle my greenhouse and re-erect on a different site.
I shall build a few raised beds and a workbench in the polytunnel. Hard to envisage given my disability?
Understandable but I am resolute in my tasks. I'm going to succeed by using baby steps, a little work each day, I won't look at the whole picture, just small tasks.
Becoming more aware of what Macmillan does, I explored their website and discovered that there was an Online Community so I joined up, chose a username, Tvman, and into the realms of the community I went. I joined the Living with Incurable Cancer Group and became a regular contributor., we call ourselves the Incorrigibles :) I have become firm friends with many contributors, I draw up a mental picture of each as they divulge details about their experience and lifestyles.
The principal aim is to give advice where possible, to help someone through a rough time, to help each other out in times of pain or deteriorating conditions. We're there for each other day and night. We wish each other good luck before results appointments and especially before operations. There's always a message of goodwill, one after the other.
It's heartwarming for me when I see in print that someone has wished me better when I have been unwell or when my arthritis pains are getting me down. I'd say it was better than any pill I could take, much better. In the community I have a sense of belonging when I'm alone all day, I know I have many friends at the tips of my fingers.
There are times of sadness when I read that someone has passed away, I've unfortunately had to tell our group once, after his wife contacted me with the sad news. I told her I would send her copies of all the posts that members sent in, to demonstrate how much he was loved by all. I carried that out with a heavy heart. His wife was astounded and delighted to discover how much he was loved by so many.
Thankfully that rarely happens, it's amazing to find out how many people are around well past as we say in our group, 'sell by dates'. Quite a few have been so fortunate that their oncologist has been able to apply for and receive funding for a new drug to test, a clinical trial.
I'd say that my discovery of the Online Community has been a wonderful find, it's been worth it for my physical and mental health, knowing that there are other people out there, undergoing the same feelings that cancer brings with it. Those people in the same situation are the most sympathetic as well as the most empathic that each of us will encounter.
Each time I meet a newly diagnosed person, I can relate to their feelings. I'll always inform them of the Online Community, telling them that it has been fantastic for me, it's THE place to visit. There will be a group where there are people with the same or a similar cancer who will understand how they feel, they have previous knowledge. My best wishes to all who read this.
If you want to share your insight into how being on the Community has affected you why not comment below? Or if you wanted to write a piece for our new series do get in touch with the team by sending an email to email@example.com.
Good to hear your story and about the support you have in and through the Online Community tvman
Thanks for posting your story tvman Such a positive message to send. xx
Now I have an actual picture of you, not just a mental one! Nice blog, tvman. Thank you for sharing your story
Thank you tvman.I found this community back in July after being diagnosed with bladder cancer.One night unable to sleep due to the severe urinary symptoms I found the awake thread on the breast cancer board,I still love reading about the adventures of their virtual guinea pig LP as he travels from one appointment to the next.His recent trip to France was very amusing.It's uplifting to read posts from all over the community and see the friendship,love and support shown.On the bladder board I have found plenty of support and advice.Being part of the community has helped me through a very difficult time and I am grateful that it is available for people who need it.My best wishes to you all.Jane xx
really pleased to see a picture of you and read about the support you have received from the online community.
Lovely Blog TV man, well said.
Take Care Elliexx
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