Wednesday, 27 March 2013

#never2young bowel cancer, Hayley's story

One of the great benefits of social media, is that that you can see a lot of up to date information quickly. With Twitter and this blog, I am in contact with people around the world, not just involving blood cancers, and stem-cell transplants, but many others too. I enjoy keeping up with other aspects that I may not be quite so familiar with.

Over time, it seems that I have connected with a lot of people affected by bowel cancer, and I am benefiting from their knowledge and support. Just over a week ago, my Twitter time line went crazy with a new campaign, #never2young. It was raising awareness about early diagnosis in young people. Bowel,is the 2nd biggest cancer killer in the UK, and like many, it is treatable, if caught earlier.

Raising awareness is a passion of mine, so I started re tweeting etc, and I received a massive response from around the world. People wanted to know more! With the campaign building, and Bowel Cancer Awareness month approaching, I asked Hayley, who appears in the below video, if she would like to share her story with my readers.

It is an incredibly moving, personal story, and I am extremely grateful to Hayley and her family for letting me share it with you.

"My journey with bowel cancer first started in June 2011, 6 months before I was even diagnosed. I was 23 weeks pregnant at the time, in the middle of one night, all of a sudden I awoke with an excruciating pain in my left side. I was unable to walk properly and was very uncomfortable. My husband, Paul, called the out of hours doctor. I was told to attend the surgery at 3am. The doctor felt around my abdomen, listened to our baby's heartbeat and all appeared normal. The doctor diagnosed me with round ligament pain. I went home, rested and felt a lot better the next morning, and so thought nothing more of it.

At 27 weeks pregnant, I was rushed into hospital as our baby had stopped moving. After a couple of hours of scans and traces, the obstetrician decided the best course of action was to deliver our baby, 13 weeks premature. Out baby was born on 24th July 2011, named Autumn. Autumn was only the size of a 23 week old baby, she'd stopped growing at the same time I'd had a pain in my abdomen. Two weeks after the birth of our little girl, the terrible pain came back in the same place and I went to see a midwife about it. We could both feel a palpable lump, I was told this is probably due to just giving birth, or a possible bowel infection. I was given antibiotics and the pain went away again. Our little girl survived for 4 weeks, she was incredibly brave, she passed away peacefully in our arms after a second operation on her under developed small bowel to rectify a blood clot. It was and still remains, the worst day of our lives.

Mid December came and I was feeling very low, depressed and exhausted. All of this, I put down to depression. The pain in my side came back and when I pressed on it the lump felt bigger and really hurt. The abdominal pain increased and I was vomiting and having loose bowels, I went to the GP and she could feel the lump in my side. The GP could see I was severely dehydrated so I was sent to the hospital to be put on a drip with suspected diverticulitis or Crohn's disease. After a ultrasound and CT scan, it was discovered that I had a thickening of the bowel lining. The surgical team came to my room and broke the news that they'd have to operate the next day as it was suspected tumour in my bowel. I couldn't believe this. I asked the surgeon whether this was the reason our daughter was premature, he said that was almost definitely the case. I couldn't believe my body had let me and my daughter down so badly.

Luckily, I was able to have IVF treatment before I started my treatment and a few weeks after my operation. Radiotherapy and chemotherapy can make a person infertile so I'm very grateful we have nine embryos frozen!

I had three months of chemotherapy, which was six sessions every two weeks, then I had twenty five sessions of radiotherapy (five days a week for five weeks) then another three months of chemotherapy every two weeks, so another six sessions. The treatment was very aggressive. I was very sick on the chemo, and I was allergic to one of the chemo drugs, so I had to take a lot of antihistamines to get me through it. I did complete all sessions in October last year and after a CT scan was declared free of cancer!

I'm very lucky to be cancer free, at the time of diagnosis, I was 32 years old and a stage 3 bowel cancer patient. It's quite rare, but not unheard of for someone of my age to be diagnosed with bowel cancer. I am currently involved with Bowel Cancer UK's 'Never Too Young' campaign. I feel so strongly that many young people aren't being diagnosed early enough, we need to change this!"

If you would like to hear more from Hayley, you can find her on her own blog

You might also like to contact Bowel Cancer UK for further information.

Wednesday, 20 March 2013

My humour gets me through!

For most of this winter, I faced my nemesis. Constant cold, damp weather.For a man with the poor immune system that I have, I tremble when watching winter weather forecasts. I seem to stumble from cold to flu,to everlasting chest infection.Finally get rid of that, then the next one starts.Feeling under the weather (literally) for long periods takes it's toll on me, as I try to continue with parts of my life.

I am now towards the 6th anniversary of my diagnosis, and when reviewing the things I faced, there are times that I honestly don't know how I have the strength to continue. I thought of something that immediately made me smile, and then I realised. Only my humour could have got me this far.

This post was written about a year ago, but I realised it is as appropriate now, as it was then, and is still what helps me cope, so I would like to share it with you all today.

Humour plays a very big part in my personality, and always has done. I have always been able to see the funny side of most situations, even if sometimes there doesn't appear to be one! In my life before cancer, it certainly helped me with my work, as everyone remembered me as 'that funny guy' and in a very competitive industry, it seemed to give me an edge.

When I started coming to hospital, I was aware that things were going to be very different to what they had been, in many ways! I was spending a lot of time in waiting rooms, doctors offices, and the chemo ward.How was this going to affect my personality? Was I going to lose my sense of humour and get depressed?

Ironically, that was one of my biggest concerns, not so much my schedule of treatment! What is there to smile about in a room full of people who are very unwell, having very toxic treatment? I approached my first chemo session very quietly and cautiously, after all I was the new boy in town! My idea, was to watch and learn how other patients were dealing with things. It was relatively quiet, some people reading, listening to music, or quietly chatting with friends. Others just sitting there on their own in quiet contemplation.

My bags of chemo were ready, now just the cannulation! Ah, my veins are difficult, here we go! It took two or three nurses to try and cannulate me, with my arm being put in hot water, cold water and eventually sister taking over and finally succeeding. What I hadn't noticed was that people were quietly watching how the new boy was getting on.Slowly people were talking about how they couldn't watch as the nurses tried to find my veins. Very quickly my old self returned and I was laughing and joking for the rest of the afternoon!

At the end of the session, a lady approached me, who's husband was having treatment at the other end of the room. She asked me what chemo rota I was on. I said I was every two weeks, why? (I thought I may have been too loud for her husband, as he was a very quiet man) She told me that her husband was also having treatment for the first time, and he was frightened. But he had laughed so much during the afternoon, he had almost forgotten about his treatment! He then wanted to be on the same rota as me.The nurses also mentioned to me that they enjoyed the sessions when I came, as there was generally a lighter mood.

I will never forget Terry, who was an ex serviceman, who had Myeloma. We met as inpatients. We both complained about our food, and although we were in the same ward, we were in isolation units so we used to ring each other and discuss our days. He would always tell me a joke or two. We always met in the same clinics and the staff dreaded it as we never stopped laughing. Unfortunately, Terry's situation got worse and he was very soon in a wheel chair, but we made a point of meeting and sharing a joke or two. I used to joke with him about having to slow down, as he had his chair.

Unfortunately Terry passed away, and his wife asked me to come to his service of celebration. Everyone had to wear bright colours to reflect his personality. After the service, his wife thanked me for coming and she told me of one of the last things that Terry had mentioned. He talked about how ill he was, and as he was a religious guy, he talked about going to Heaven. He then told his wife, that in the nicest way, he hoped it wouldn't be too long before I joined him there so that we could continue our fun!!

That is when I truly understood the power of humour in a cancer environment.I do appreciate that it is not for everyone, and not for every occasion, and I am always very aware of people I don't know, in case it is not for them, but sometimes some serious things might just seem not quite so bad, with a little added humour.

I know that sometimes it is difficult to find a smile at times, even I struggle on certain days, but I have found that humour is what gets me through. It has been my defence for tricky situations and has always served me well.It is not rehearsed or learned, some of us have it, and some don't, but don't we look at life differently if we are laughing?

I have just found this piece on the web: Interesting!!

Research Supporting Laughter Therapy

A growing body of research supports the theory that laughter may have therapeutic value.
For years, the use of humor has been used in medicine. Surgeons used humor to distract patients from pain as early as the 13th century. Later, in the 20th century, came the scientific study of the effect of humor on physical wellness. Many credit this to Norman Cousins. After years of prolonged pain from a serious illness, Cousins claims to have cured himself with a self-invented regimen of laughter and vitamins. In his 1979 book Anatomy of an Illness, Cousins describes how watching comedic movies helped him recover.
Over the years, researchers have conducted studies to explore the impact of laughter on health. After evaluating participants before and after a humorous event (i.e., a comedy video), studies have revealed that episodes of laughter helped to reduce pain, decrease stress-related hormones and boost the immune system in participants.
Today more than ever before, people are turning to humor for therapy and healing. Medical journals have acknowledged that laughter therapy can help improve quality of life for patients with chronic illnesses. Many hospitals now offer laughter therapy programs as a complementary treatment to illness

Do you agree? Do you use humour in a similar way? What helps you cope? It would be great to hear from you.

Thursday, 14 March 2013

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 is dealing with. How can we truly read and understand everything we look at, we can't! We don't have time or capacity. We become selective about what we do. We may choose to 'follow' people, but even then, we select what we want to read.

So, we have now scrambled our brain with technological stuff, what about face to face communication?  Ah, 'that's different,' I hear you say. In many ways it is, as you can see body language and eye contact, which lets us know how people are reacting to our conversation, but I wonder, if our brain, is starting to deal with conversation, as it deals with social media et al, by being selective?

We know that we all understand things differently, but my theory is that we all hear things differently. My wife and I joke about 'selective hearing,' but I really believe that this exists.When you put this into a serious situation context, you can start understanding the problems.The example I would like to use, is for those of us that have received a cancer diagnosis.

I don't know about you, but other than hearing the word cancer, I didn't really take a lot of the rest of the conversation in. Luckily, my wife was with me when I was given the news, and she digested the information much better than me.From then on, we discussed the conversation. She heard bits I didn't, and vice verse. Strangely, I never really took in the bad stuff. Was that because my brain chose to ignore it? I think it was. Maybe that was my coping strategy?

As my regular readers know, my disease, (Mantle Cell Lymphoma) is quite rare, and other than in my own clinic, I have never actually met anyone else who has it. This week I did, and we had a fabulous conversation. Neither of us could really believe it. Our stories were similar in many respects, but we both had a slightly different understanding of things. We had both been given information and we made what we could of it. We added more over time, and came up with our own answers.

Personally, I like to know as much as I can about my own health issues. I feel I can then make better decisions. But if I am not using all the information correctly, maybe I am not making the right ones. Other people prefer very little knowledge. Maybe in this instance ignorance is bliss!

Certainly, information, is available everywhere, which shows a vast improvement in the cancer sector, over recent years.However there is still an issue, about how we all understand it. If we are all selective in what we read, then we will have very different ideas about our disease and treatment.If we then have a discussion with the Consultant, and we are only listening to parts of what we are told, you can understand how we get confused and frightened.

I am an eager participant in all things 'social media' but I don't work. I probably have more time than most, to study it, but there are times when even I go blank, from reading tweets, blogs, etc. All interesting and relating to my hobbies, but it seems my brain is overloaded. There is a possibility that I miss important things in my quest to keep up. That seems to be the difficulty these days in all forms of communication, being able to prioritise what is really important!

Friday, 1 March 2013

Carol's legacy will live on

I consider myself very privileged to meet and communicate with the very wonderful people that I do.Everyone's case is special, and there are always moments that make me draw breath. It never ceases to amaze me, the number of inspirational people that are in this world.Every now and again, I see a story that stops me in my tracks, and this is one of those!

A fantastic example, of how Social Media, is helping the world join up, and enabling us to do things that would have seemed impossible, just a few years ago. I wanted to share Jeffrey's story with you all. A young guy, who understands the value of doing things while you can. Carol, his grandmother has terminal lung cancer. He wants to use his skills to preserve some memories for the future, and share his values with the world. Those of us affected by cancer will understand exactly what he is talking about.

This piece is longer than usual, but it deserves your time! I have viewed the video on countless occasions,(link at the bottom of the piece) and it never fails to move me. Here is Jeffrey's story in his own words.

"Hey everyone,

My name is Jeffrey Brant. I am a 25 year old, aspiring filmmaker from
Nashville, Tennessee. I’ve been focusing on freelance video the past
two years, and have been making great strides toward a career in film.
I started JBrantFilms, a freelance company of my own, to get my work
out to the public eye. Our support has been great since I started, but
now my producer and I are starting to focus on topics that we feel
deserve our attention. This is why I’m reaching out to you today.

On January 9th 2013, my grandmother was diagnosed with stage four-lung
cancer with doctors only giving her a few months to live. Now my
biggest regret in dealing with the death of family and friends in the
past, is not being able to understand WHY I didn’t do more to preserve
their memory. Why didn’t I take the time to ask the questions that
really mattered? And above all, with having a passion for a camera,
why didn’t I ever use this media to record moments and preserve
memories I had with my loved ones?

My father passed away going into my senior year of high school in
2005. My best friend and I found him on the front lawn, dead from what
they said was a massive heart attack. It took a couple of years to
finally understand why the tragedy had such a prolonged effect on me.
It was not until I came into my own as an independent person and an
independent thinker that I realized I had never truly known the man
who raised me. I never knew what made him tick. I never knew what his
deepest regrets or his childhood dreams were. I never got to know the
person who always picked me up from basketball practices and gave me
money whenever I needed it. I was too busy with routines that I firmly
believed were the most important things in my life at that time.
However, that was not true.

After watching one of those “heart felt story” kinds of movies at four
in the morning, days after her diagnosis, I was inspired to tell my
grandmother’s story in dealing with this cancer. A documentary I’ve
named, “Head Up..Heart Full,” is a story with hopes of teaching a
lesson about life and how precious it really is. I want to portray how
the most important gifts we have, especially each other, are often
taken for granted.

On February 6th 2013, I launched an online crowd funding platform
through a website called We set our goal of $20,000 to
help raise money for cost of equipment, pay for the travel and lodging
expenses for a small crew, including myself, as well as promotion and
distribution for the feature film when it is complete. We want to push
this message to as many film festivals as possible, worldwide. The
fundraiser is set to last 32 days, ending on March 10th 2013.

As stated above, the funding we raise will cover the costs of
traveling and lodging. This is because the story takes place on a
Native American reservation in Canada where I was born. I’m a
full-blooded Native American Ojibwa from the Mississaugas of the New
Credit First Nation reserve in Ontario, Canada. Through this firsthand
look at cancer, I also want to cover the culture of a society that not
many people know much about these days. We want the message of life to
be first and foremost, but we want to do it in a style that’s visually
compelling, true to the native theme, and most importantly relatable
to an audience of all races affected by this disease.

All I ask is that you take five minutes today to watch the video on
the link below. Click the "contribute" button and help donate to our
cause. Help spread the word and let’s make this film a reality. Every
little bit counts, I promise you that. Every little bit makes a
difference. This story isn’t just for my family, but for everyone who
has seen their lives and the lives of those close to them torn to the
ground by this awful disease. The message is not about death, but the
importance of life and all of its wonderful attributes that go
unnoticed. I still believe compassion in our society has a long ways
to go. This is just our contribution at making it believable once

With all my best wishes,                 

Jeffrey Brant "

IndieGoGo Link: