My New Year’s Message

Happy new year everyone, I hope the festive period was relaxing and enjoyable for all of you. As a family we decided to change Christmas up a bit this year. I stepped into the role of ‘host’ for the first time which sounded like a fun idea until Ben broke the news to me that he wanted a variety of stuffings, a slow cooked lamb shoulder, a turkey and a vegan option! On top of that my landlord arranged for a new hob to be fitted the week before Christmas and I only realised on the day that two of my pans would work on it. Still, if there is one thing I can say about my life it’s that I am faced with more than my fair share of challenges and I was certainly not going to let this latest one phase me, so took to it with full gusto.

In the end Christmas day was fabulous, Ben spent the day volunteering at a homeless shelter with friends and by late afternoon we all gathered for an entertaining evening filled with games, food and booze (albeit limited for me). I banned presents on the day, we’re all adults and don’t need anything in particular so why go through the rigmarole. Instead the money I would have spent went to a much more worthwhile cause (more details above on this on my fundraising page, along with photos from my truly fabulous party). A big thank you to mum, dad, Ben, Olly, Charlie and Cherie for making it one of the best Christmases I’ve ever had.

New years eve was an altogether different affair. It’s a particularly tough occasion for me as I observe friends reflecting on the year gone and sharing their optimism for the year ahead. If there is one thing I have learnt having stage IV cancer it is to take each day as it comes and not look too far ahead as thoughts of my future both overwhelm and frighten me. I therefore found myself uncontrollably miserable and fairly difficult company, which in retrospect I apologise for.

Going back to work soon snapped me out of the funk I found myself in and now I am back to my old routine of reading, researching, working, planning holidays and enjoying life (although unfortunately my tumour markers are rising again so I am entering into the new year with ever more uncertainty).

Now firmly into 2019 I think it’s important to do a bit of housekeeping for my first blog post of the year so I want to use the occasion to remind you all of why I started to write in the first place; to raise awareness and to share my story. I warn you now, this is one of my longer posts!

A few weeks ago I read the devastating news that another young lady under the age of 40 had died of bowel cancer. In the year leading up to her diagnosis it was reported that she was going to the doctors frequently complaining of passing copious amounts of blood (the report said cup fulls). I am personally shocked that these symptoms were not investigated further sooner but it brought back memories of the 11 times I went to my GP over four years complaining of problems with my gut. As I read the comments section below I was overwhelmed by the number of people who wrote that whilst this was sad it is very rare therefore an easy mistake for the doctors to make. Well let me tell you now, bowel cancer in young people is NOT rare.

I am thrilled to see that more money and more attention has been given to the NHS in recent months (regardless of the political agenda behind it) but lack of funds is only one part of the problem. Bowel cancer in young people is a fairly recent phenomenon but one that is rising rapidly (40% increase in the last 10 years with a further 6% increase in the last year alone) yet this development still seems to bypass GPs and doctors who insist on considering it an old person’s disease. Instead they opt for a premature diagnoses of IBS which should only be diagnosed once the serious conditions are ruled out.

On one of my more recent trips to a&e a consultant asked me what was wrong, when I told her she responded with ‘but you’re so young? Young people don’t get this, how do you think you got it?’ at the time this felt like an unhelpful barrage of stupid comments and questions but upon further reflection I can see it is a fundamental lack of education. Unfortunately the result of this lack of understanding is that 60% of young people diagnosed with bowel cancer are diagnosed at stage IV (normally as a result of an agonising a&e visit with a bowel on the verge of perforation). At this point the chance of a cure is slim to none, the five year survival rate is 7% and the pain and suffering young people and their families have to go through in the months and years following this type of diagnosis is nothing short of horrific. Let’s be clear, this isn’t a group of young people burying their heads in the sand, this is a group of young people who did everything right, we flagged our symptoms and asked for help but we were all dismissed and for this we suffer the consequences. It. Must. Stop.

I am part of a private facebook group of young bowel cancer suffers. It’s a club none of us want to be part of but without their support and love I would find this experience even more intolerable than it already is. Shockingly in the last week alone we have had six new members join the group. All under 40, many with small children, many without and now with no prospect of a future with children. All of us are suffering as we endure painful treatment that we know will unlikely work in the long term, frantically reading and looking for the next best option, desperate to stay alive until death feels more reasonable. None of us should be here, yet here we all are, contemplating our own mortality rather than making plans for our future.

It is important to stress we are not a bunch of unhealthy individuals who sat around gorging on copious amounts of takeaways, this is a group of outwardly healthy young people; marathon runners, sporty types, vegeterains, healthy eaters, they are all there. Cancer does not discriminate. People join this closed group following an invite from current members. Imagine then, the number of people who are out there who haven’t found us yet. I suspect there are many hundreds if not thousands of us. My surgeon at the Royal Marsden said recently that in one week alone he performed major colorectal cancer surgery on three women under 40, one lady had to agree to terminate her baby during the procedure. This might all sound awful and shocking to read but it is a reality I think vitally important we are all aware of.

The one thing all of us sufferers will agree with is that we so desperately want to see the numbers of people diagnosed at stage IV reduced. Early diagnosis is key to a cure. If the vast majority were examined properly when we first flagged our problem many of us would be cured right now and would put cancer down to a small blip in the road of an otherwise long and healthy life. The only way I think we can really achieve early diagnosis  in the short term is to raise awareness among ourselves and encourage everyone to become their own advocates, we cannot simply wait for healthcare professionals to catch up.

I went to see my GP several months after I was diagnosed. It took a long time to pluck up the courage. I was angry, so very very angry, I wanted him struck off (actually worse than that but let’s not go there!). I was galvernised, ready to find some way to hurt him and sue the practice. In the end when I met him he could barely look me in the face, he apologised to me, said he couldn’t believe it, ‘when I think of all the times you came to me crying with pain, I just didn’t ever think it could be this’. I could see he was broken by it, I didn’t want to hurt him really, it’s not in my nature. What if I do only have a short time left to live, do I really want to waste it fighting someone in court? I decided against it, forgiveness is important, stress and anger can be a lethal cocktail and the whole process felt unhealthy and unwise. In the end I made him promise me that he would look at patient’s symptoms more closely, giving no consideration to age, after all I am proof this is irrelevant. I told him this could never happen again and he agreed.

Bowel cancer does not yield the same level of publicity other cancers do yet it is the second biggest killer after lung cancer. People shy away from talking about their poo but we must recondition ourselves not to. The digestive system is a beautifully engineered machine we should all love and treat well. It’s the one system that will tell us very quickly if it is unhappy or needs attention and these signs should not be ignored.

People bolt at the thought of going through a colonoscopy or having a rectal examination. Fortunately for me this was never an issue (it’s just a shame I was never asked to have one). Several years ago I lived with a girl, Suz, who performed colonoscopies at the Bristol Royal Infirmary (funnily enough she then went on to work as a theatre nurse at The Royal Marsden for a few years). She commented at the time how sad it was that the majority of people that came to see her were apologetic, embarrassed, ashamed or nervous. She often spent a lot of her time reassuring patients that it was all fine, she had seen it all thousands of times before, it was no big deal and the most important thing she was concerned with was making sure patients were healthy and if not to help get them back to full health. I want everybody who reads this to remember this message and not shy away from the symptoms; irregular bowel movements, trapped wind, bloating, unexplained loss of weight or extreme fatigue must be properly investigated.

I appreciate this is not the most light hearted of posts to start the new year with, but if I have one wish for 2019 it’s that we see the number of young people diagnosed at stage IV decrease. If I am being greedy my second wish would be to see proper action taken to understand why there is such a dramatic rise of cancer incidents in young people so we can work more thoroughly to prevent this tragedy from occurring at any stage. We cannot simply put the rise in cancer down to people living longer, that does not explain this rapid rise in young people.

In the meantime please all be vigilant, listen to your body and if a problem persists demand to be seen by a specialist. It is your life, take matters into your own hands, no one wants or deserves to be cancer cannon fodder whilst we wait for current systems to improve.