Archive for the Mantle cell Lymphoma Category

” Unfortunately, science hasn’t caught up with you yet! “

" Unfortunately, science hasn't caught up with you yet! "

My personal cancer experience has continued apace for more than 6 years. For good or bad, we have managed to keep things going. I say we, because, there are very many people involved in that process, not least of all my medical team, who have kept me alive with their skill, and determination, and no small amount of treatment. A lot of positive things have happened, regarding blood cancer, since I started.My disease is a rare Lymphoma, (Mantle Cell.) It is aggressive, and generally considered incurable. Survival rates are low, so prognosis is mostly poor. I was given the most appropriate treatment at the time, followed by an unrelated stem cell transplant. If that wasn’t successful, my options were limited. However, it seems that things are improving quickly, and it now

The reality of living in a permanent shadow

The reality of living in a permanent shadow

Despite, the fact that I don’t work, my weeks are never boring. My trips to hospital use a lot of my time, and I have calculated that in every month, I spend a complete week at hospital. I have had to become very selective in the projects that I am able to get involved in, so that I allow myself, enough recovery time between treatment. My reality is that I am unable to do the things that my brain remembers I used to manage! It has taken me a long time to come to terms with that. I watch enviously as my friends fill up their social lives, and plan holidays. Remembering those days, as if they were yesterday. Now, there are times when an evening out can feel like

My belief drives me on.

My belief drives me on.

I had already decided a few days ago, what I was going to write about this week, but just before I started writing, I was told of the death of my friend Rory Morrison, who was a broadcaster on BBC Radio 4. Like a lot of people in my life now, cancer had brought us together. We first met at an awards evening for The Lymphoma Association. I asked if I could have a picture taken for my blog, and we then started talking. We had so much in common, including, a rare aggressive lymphoma. I knew that Rory was facing some of the treatment that I had already encountered, including a stem-cell transplant and high dose chemo. We decided to stay in touch, and via social media, I shared numerous stages

Sometimes we hear, but don’t listen.

Sometimes we hear, but don't listen.

We all lead busy lives, and it is impossible to fully dissect all the information that we get given, either by word of mouth or written. With the explosion of social media, smart phones and tablets, we are being bombarded by videos, tweets, Facebook messages, blog posts, advertising etc. It is getting, ‘noisy’ out there! We are now choosing to open our lives up further, as many people are on their phones, tablets,etc, as soon as they wake up till going to bed. Almost in every venue now, it has become accepted that people are fiddling with their phones, checking emails or social media etc. Even our children are following in our footsteps, being glued to their phones wherever they go. Our brain is busy, with all the random stuff it