The Importance of cancer support via social media

Since I was introduced to the world of social media, I could immediately see how powerful it might be. Certainly, like any new tool, you have to learn how to use it properly, to get the best from it. Which takes time. With trial and error you will find what it does well, and what it does, not so well.

Coming from a business background, and attempting to always keep things simple, I couldn't see what wasn't to like, by connecting like minded people, across the world. Once I found myself taken hostage by cancer, I applied similar rules here. If I can't find physical help for what I need, let me look on the net!

I couldn't find what I felt was required, so I thought I would try and create something. People often ask me why I spend so much time on a project that doesn't pay. But I know, how much difference these blogs make to people affected by cancer. How much they can relate, and how they help to remove that terrible feeling of isolation. Some things are not about money!

Below, I have copied comments, as they were published on my previous post. They moved me so much, that I felt obliged to share them with you. Psychological and emotional support for people affected by cancer, is still desperately lacking, and in a lot of cases, the issues are barely acknowledged. People are carrying this burden constantly, along with their physical problems.

It's not only patients that are gaining from our writing, but I know personally, when I speak to members of my own medical team, how shocked they are at some of the things, they read on my blog, that are happening to me. We are all still learning, but we need to accelerate things. Time is one thing that is not on our side!

"dear chris,

first some background of what I believe has given me a clue about feeling lost. both my husband and I had cancer at the same time - his was multiple myeloma, mine was ST IV meta BC, amazingly, we both achieved remission, also at the same time! we decided to mix the "new normal" and live "life-reinvented", gloriously and to the fullest.

sadly, only 9 months into remission, hugh died -
very suddenly. I found him next to me in our bed with no respirations or pulse. after 3 days in cardiac ICU, he was removed from life support, and I was a widow.

two months later I was diagnosed with uterine cancer, ST 3 with mets to the cervix. I am starting tx this week.

it's my belief that feeling lost is really grief. I know grieving for my husband is a separate (though certainly overlapping) process. but I have spent a great deal of time in retrospect, and now realize that what you spoke about reflects what hugh and I lived when we were in remission - a desire to live on our own terms and not on cancers' term. now, as I navigate towards tx with a new cancer alone, I can reflect in a more realistic way on what both hugh and I might have suffered post treatment - and I know we did feel tremendous grief at the loss of so much. but you see, it was we two, still crazy in love , desperately wanting to celebrate life. there were times we hid our pain and fears and losses - our grief - to help one another be happy.

as I grieve profoundly for my beloved, I feel extremely grateful for all those nine months we had, as well as the time we had cancer together. it almost seems a meant-to-be-ness that we became so utterly entwined and in love with each other, and a same meant-to-be-ness that we were able to live so happily those 9 months - ignorance was truly bliss.

in retrospect, as I read your post, I ponder what all would have befallen us had we not been a couple with cancer, nor achieved a robust remission together, and not flung ourselves head long into a life of adventure and delight. my conclusion is that eventually grief would have had it's way with us, I've wished many times to be able to bring clarity to so many mixed emotions, chris. sometimes my widow's grief is the overwhelming force in my life - hugh has only been gone since may 5th. but as I near treatment for the next gauntlet of cancer to go through now I am more typical of the individual who will face it alone; and even if one has faithful and supportive spouses, family, friends, and whole posse of good doctors - there is still the loneliness, insecurities, fear, and feelings of helplessness.

the big question is how in this day and age, could the medical community dismiss the element of grief from our care. the bigger question looms with more urgency - when and how will the message be delivered, loud and clear, and be dealt with by clinicians who simply give no validation to their patients, leaving them bereft and feeling lost and grieving.

chris, I can't thank you enough for sharing your story in this post. for months I've had such niggling and confusing feelings about insecurity, fear, and at times, just wanting to walk away from all things cancer, thoughts that are so foreign and disturbing. being able to comment meant I had the task of trying to figure out the very bewildering and sad and overwhelming issues you brought to the forefront. and I am so grateful to have had your post to finally be able to have clarity.

I am so sorry for all that you have had to go through. you are amazing, and a wonderful resource for superb support and the education you give so generously to others. I hope with all my heart it will all come back to you a thousand-fold. keep writing - you do it so well, and your are helping legions of other's whose hearts, minds, bodies and souls are hurting.

much love, and lots of warm hugs,"

Karen, TC


My heartfelt thanks and good wishes go out to Karen, and thank you for sharing.

Celebrating life and sharing the legacy

The last few weeks have been particularly tough for me mentally. After more than 6 years on my 'bumpy journey,' I have seen so many heart breaking situations, many personal, but plenty from friends and colleagues. I have often thought that I have experienced so much in the cancer environment, that there surely can't be anything left that can shock me and pull on my heart strings. But there always is!!

Ironically, my personal health has been the steadiest it has been for some time. The good weather has finally arrived, and the constant threat of colds, flu and chest infections, has subsided for the time being. My maintenance treatment is keeping me mobile, and I am slowly peeping back into the real world again, although with caution, I might add!

Due to my commercial background, I consider myself to be in the 'cancer business.' It also feels like a business, because it is what I spend a lot of time on. As with any business, there are certain things that will always be part of your work. Unfortunately, in this environment, death is very much a part of what we do. Nobody wants that, but it is a fact. Given that this is the case, we must expect to deal with it.

How we deal with things when someone 'passes,' is unique. We will all have had different relationships with that person. Some of us will be closer than others, family and friends, then colleagues etc. There are no rules how we say goodbye, we all do it in our own way. Interestingly, now days, most ceremonies, have a religious basis, but things are even changing here. People are starting to personalise things, to reflect the wishes of the individual.

 

 

 

Yesterday, I was celebrating the life of an incredible young lady. I was fortunate to be a friend and colleague, and my personal experience of a stem-cell transplant was helping her through her own set of unique circumstances. In her young life she touched so many people, with her boundless energy, warmth, and enthusiasm. Even though she was going through her own personal trauma, she would be campaigning or fund raising for cancer charities.

In reality, she only lived, half an average life, but the things that she managed to achieve in such a short time, were probably more than most of us could manage in a lifetime. Her impact cut across generations, and there was such a mixed community to celebrate her life together. We were all recalling our favourite moments, of which there were many.

But this is not where the story ends,nor should it. Her legacy will live on! She has done so much campaigning in the cancer field, that you won't have to look too far, to find a video or a magazine article written or presented by her. The impact she had on others was incredible. She certainly helped improve lives, whilst she was able to, and I'm sure that so many new lives will be positively changed in the future, by her work in the past.

I guess that when most of us think about the word legacy, it involves finance. For example, what we might leave for our children when we die. Since my life has been affected by cancer, my thoughts turned to my own legacy. I have been extremely lucky and have managed a few extra years beyond expectation. This has allowed me to put certain things in place which can hopefully continue, beyond my own life time.I am also trying to play my own small part in improving the lives of people affected by cancer in the future.

I am celebrating the lives of my friends who have died recently. They have had a massive impact in my own life and work, and will continue to. I know that their legacy will live on long into the future, and that their families are very proud of what they were able to do. I am so grateful, to have been a small part of their life too.

This post is dedicated to Bengu Shail, and her family. Thank you for being my friend, and for the legacy you have left us. A brilliant example of Bengu in action can be seen in this video please take a few moments to check it out.