A very Happy New year from everyone on the Community Team, we are excited to kick off the year on the Community News Blog with the third volume in our series ‘What the Community means to me…’ This series highlights just how much support, friendship and kindness is shared on the site every day. Today moomy shares her story, why not take a moment to read through? Missed the last instalment? You can click here to read Johnty and popgate’s stories.
‘I’m really called Helen. I know, the onsite name isn’t my real one! I joined the Online Community so many years back that I’ve seen it change a few times. I’m not even sure quite how long ago it was that I joined. It was then organised into two main groups, ‘General’ and ‘Chat’. I posted a question in ‘General’ but looked across at ‘Chat’ and saw some humour, genuine and black at times too, and joined there as well.
Some of the online friends I formed there, I still have as friends on other media.
'It’s astonishing how huge a circle of virtual friends can get!'
I joined as our daughter (I’ve called her Jen in other blogs here so will continue though of course that’s not her real name) was being treated for what I now know was primary refractory Hodgkin’s Lymphoma; that is, it did not respond to any standard treatments available at the time. The Online Community didn’t so much help with specific queries about treatment for Jen, but did definitely lighten the burden! Gradually over the years the structure of the site changed as Administrators changed and with the increasing threats that cancer poses, the site, like Topsy, ‘just growed’!
I’ve had ‘previous’ with cancer, as fifty years back lung cancer took my dear Dad, 2 months after he had been able to walk me down the aisle. My husband and I knew he was very ill of course, and had talked about whether to bring forward, delay or even cancel our wedding. In the end, we stuck to the original plans and were happy we did.
During the time that Jen was going through her illness, my only sibling, my older brother, was operated on for bowel cancer, difficult to help as he and his family live in the USA. He had a resection (as one of his adult sons remarked, it was fortunately a semi colon and not a full stop!) but needed no further treatment other than regular monitoring.
Jen, however, went through all treatment that was available at that time, her amazing, clever, approachable consultant, Professor Radford, searched for clinical trials for her, one kept her lymphoma quiescent for around two years, while she grew stronger again after a good deal of treatments.
At that stage, often spending some of my time zooming northwards by train I also spent time helping in the now reorganised Community, greeting those who joined facing the gold standard chemo regime for Hodgkin’s lymphoma, ABVD. It is a nasty chemo but really effective for the vast majority, most of the incidence of that are in the late teens and early twenties age group.
I was an early user of ‘Carers Only’ probably a founder member, and it proved a great help in the dark days when it seemed nothing was truly helping Jen.
'I gained such love and support from fellow carers that sometimes my screen was in danger from the wet of my tears!'
Jen’s second trial involved her being admitted to a London hospital and being in a lead lined room for around nine days. She was mostly monitored by nuclear scientists as she was radioactive! This sadly didn’t really work, and resulted in a really nasty, total body rash with swollen, dry skin. She’s a freelance musician with a very ‘public’ face, so having to cancel work was a financial issue as well. We searched for methods of helping her skin, ending up with a Bio oil which really proved useful.
At this stage in our lives, the Community Admin team asked if I would become a Community Champion.
'I felt honoured to be asked and was happy to be able to return some of the help I had gained and learnt all about this new role.'
I was free enough to be able to spend time greeting new people and signing them to relevant groups. I also requested Admin to set up a new group for Stem cell transplants for blood cancers as this type of treatment has differing needs and is much more specialist in nature.
Jen was then allowed a totally new trial drug, which was waiting for FDA registration in the USA, on a compassionate basis. It worked, and fully! After her interim PET scan a slightly bemused but pleased Professor Radford phoned her on her mobile (in a taxi in Paris, catching up with her then tour) to tell her she was in a complete remission. She was then faced with a difficult decision, the treatment was so new that nobody knew how long that remission would last, her lymphoma had been very resistant. Professor Radford strongly suggested a further transplant, this time of donor cells. She spent some time debating this, taking advice but in the end it had to be her decision and hers alone.
'She decided to go through with it and had her German man’s cells in 2011. I felt incredibly privileged to be asked to go with her to meet him.'
Jen is still in remission though can still suffer with fatigue and has a very low immune system and is still in need of regular treatment and monitoring for this, now in Oxford as she has moved south. She also has a very high blood ferritin level as a result of her many transfusions and will soon need to have treatment for this.
Around this time on the site there was an incredibly long thread, started by a worried person just diagnosed with lymphoma and joined by quite a number more, it grew and grew! I sometimes wish it were still available to see. Sadly, we did lose one lovely young lady, and some time later a further man who had, like Jen, been through a great deal of treatment. Admin helped set up a private thread so that a few of us who were able, managed to arrange to meet in London. Again I’m friendly with some of them on other media.
In 2018 I found a breast lump. In my heart I just knew it wasn’t ‘good’ though my GP didn’t seem too concerned but referred me anyway. I was seen in our local small but busy and friendly breast clinic. Yes, I was proved right, it was indeed breast cancer. I felt that my side of our family had by now surely had enough of this beast?
'But my lovely lady surgeon met us all, Jen insisting on being there too, to help her carer Mum.'
It was decided that as we had some holiday booked, a sentinel node biopsy could be planned one side of that, and a mastectomy the other. Like my brother I was fortunate not to need chemotherapy or radiotherapy. So yes, as all nodes were clear, I had a permanent implant. Am I vain? Maybe, but somehow I knew I never wanted to glance down and see a flat side. Am I a hypochondriac? Probably!
'So I duly joined one of the busiest groups on the Community site, the Breast Cancer group, where I found so many lovely people, full of advice, support and love.'
I’m glad I stayed on the site, it’s proved to be a great place to share concerns, get support and give some back too.
Life as a retired Occupational Therapist has grown busy, apart from other interests, my husband and I joined and have become Trustees of the Turing Welchman Bombe Rebuild Trust at the National Museum of Computing on the Bletchley Park campus and regularly demonstrate both Enigma and the Bombe and tell how the war time ones helped shorten the Second World War. I’m even the Bombe Technician, learning more to be able to take on some of the machine’s regular maintenance duties.
'Life, after all that it’s managed to throw at me, is still good, and I still enjoy helping others. That involves time on the Online Community. Long may it continue!'
A huge thanks to moomy for sharing their story with us today. If you want to share your insight into how being on the Community has affected you, why not comment below? Or, if you want to write a piece for our new series do get in touch with the team by sending an email to community@macmillan.org.uk.
