My Problem with Cancer Research UK’s Obesity Campaign

You might have seen my collages of young Bowel Cancer patients who led an active lifestyle and ate a good diet.  The collages were in response to research showing an increase in Bowel Cancer in young people, which despite not doing any research into the cause attributed it to diet and lifestyle.

Well, I accept diet does play a part in Cancer but it really is not the whole story.  While I believe it is important to raise awareness of risk factors we have to be really careful how we do that.  This is a stark image used in Cancer Research UK’s campaign to raise awareness of obesity as a risk factor in Cancer.

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So, what is wrong with this you might think?  Yes, obesity is a cause of cancer but do we really need to link it to cigarette packets?  I get it that smoking can be a factor in Cancer and the messages on cigarette packets about that risk were quite powerful.   Cigarettes don’t cause obesity, and smoking is something people choose to do, a behaviour we can relatively easily consciously break.  Yes, yes, some will tell you it’s an addiction and it’s not that easy to stop, sorry being married to someone who smoked heavily for many many years but also successfully quit I don’t buy any of that.  If you really want to quit smoking you can.

You might say changing your eating habits is easy and requires the same will power as quitting smoking, I think however our relationship with food can be much more complex than that, we only have to look at eating disorders to realise this.  Also sometimes there is a medical condition that has an impact on a person’s weight regardless of what they eat or how much they exercise.  Or maybe a person leads a sedentary lifestyle because they physically cannot exercise due to chronic illness or disability.

Is it really healthy to blame people for their Cancer?  It might be related to their weight but equally, it just might not.  I mean there are plenty of us slimmer fitter types who get Cancer.  I worry that laying blame in this way will mean people become too embarrassed to visit their doctor, or even talk about their health issues for fear of being blamed.  I also worry that slim, fit, otherwise healthy people will think they are immune to Cancer, and won’t take symptoms seriously.

We need to take care to sensitively raise awareness of risk factors, it would be more helpful to have a campaign that lists the biggest risk factors but clearly states while they increase your risk they are not the only causes and that being low risk does not mean no risk.

Actually, you know what is actually the biggest problem here?  Well, I think the biggest problem is that it reads “Obesity is a cause of Cancer too”  when a simple change to “Obesity increases your risk of Cancer too” would make a huge difference to how this reads.  Saying its a “Cause” indicates it is the reason for a person’s Cancer, when actually each individual case is different and for many, it is not the reason even if they are overweight.   Whereas raising awareness that it increases your risk says everyone is at risk but those that are overweight are at increased risk, this also does not lay all the blame on one thing, and it is more factually correct in my opinion.

Cancer Research UK, please pull your campaign and rethink it to be more sensitive to Cancer patients and help ensure people don’t think they are not at risk just because they are not overweight!    The wording and imagery of this campaign are wrong and insensitive on so many levels.

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A Rise in Young Bowel Cancer Patients….

Let me introduce myself, my name is Beth, I am 39 and have two small children, a husband and a menagerie of pets.  I am also an incurable stage 4 Bowel Cancer patients diagnosed at the age of 37. I am super happy to see all the media coverage of the recent research highlighting the increase in young people diagnosed with Bowel Cancer, and when I say young people I mean those under 50.  

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The thing is though the reports have not even started to investigate the cause for this increase, they are literally just about the numbers.  However, the research refers to poor diet and a sedentary lifestyle as major factors which has been picked up by every single media channel – of course, because this is what they have been told.  While I am happy to accept that diet and lifestyle may play a part, I cannot accept that this is the full and true picture.

I myself was definitely not overweight at 5ft 4” and 9st 8lb, I am far too fussy with food to eat processed or prepackaged stuff, I have to make everything from scratch so I know exactly what is in it – I would freak out if a stray onion or tomato made it into my dinner!  I drink gallons of water, ride horses and am generally a very active, slim and healthy person. Yet I got Bowel Cancer and I got it young.

I am not the only young Bowel Cancer patient who does not fit the traditional profile, you know overweight, heavy drinker, smoker, etc.  Nope, most of the young bowelies I meet are a healthy weight leading a relatively healthy life. Some are vegetarians, some simply eat a balanced diet, some are tea total, some like the odd boozy night out, some are marathon running gym bunnies, some are just busy active people, some have a genetic disorder, some have another disease such as Crohn’s that finally lead to Bowel Cancer.  

There is no evidence or data to show that younger patients develop bowel cancer because of poor lifestyle choices, in fact there is no data at all on why there has been such an increase in young bowel cancer patients.  I find it upsetting when I read that it was apparently all my fault because I did not eat the right things or do enough exercise, because that simply is not true. In fact it is thought that Bowel Cancer in young people may be different to Bowel Cancer in older people, location of tumour and DNA are thought to provide some evidence of this, but we need more research in this area.

Not only are you never too young to get Bowel Cancer, you are never too fit, too healthy or too slim either!  Sadly these misconceptions are often a barrier to getting a diagnosis for many of us, myself included being misdiagnosed with things like IBS, meaning when are finally diagnosed it is often when the disease is in its later stages and there is a much reduced chance of being cured.

How about I introduce you to some Bowel Cancer patients who did not fit the standard profile?  Ok, I will! Here are some of the young Bowel Cancer community who want you to know that if you are slim and fit it does not mean you are not at risk, and no matter what your lifestyle or diet if you are diagnosed with Bowel Cancer at an early age it is not your fault.  

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Do any of us look or sound like we did this to ourselves with our diet and lifestyles?  No, I do not think so either. So, why did we get Bowel Cancer so young? Nobody knows, but this rise is set to continue not just here in the UK but across Europe, in the USA, and Australia, maybe even worldwide.  

I would also like to point out that while the majority of the people I have introduced you to are young white women, Bowel Cancer does not discriminate and it equally affects men and women of all ethnicities.  There is still a huge stigma to Bowel Cancer and this is more prevalent in some cultures than others, we are working hard to change this but at the moment these are the people who are happy to publicly share their story and were online at the time I asked.

So you see I really am super happy to see this worrying trend being proven and given the attention it deserves, but I would really like to show the world who these young people getting Bowel Cancer are.   We are young onset Bowel Cancer. Anyone and everyone is at risk. It is not our fault!

Scanxiety and Scan Results…….

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Something all Cancer patients will tell you is that scans bring about huge anxiety, from the moment you get that scan date you start worrying.  Has anything new popped up, is there spread, will I get good or bad news.  Scan day is always a big deal, even though we get nothing in the way of news on the day, not even a thumbs up or down from the radiology staff!   Then the waiting starts, some of us are lucky and get results within a few days, others have to wait three weeks or more all the time stressing about what the doctors know about our bodies.

Nothing we do will affect the results, worrying is not going to change anything, and even though we know that rationally we just cannot stop ourselves stressing.

I had my latest scan three days ago on Saturday, and today I got the results, my previous scan was clear because I had just had surgery to remove all the Cancer in my lungs.  It has been four months since then, so the wait even though relatively short has been quite stressful, wondering if anything new has appeared.  After a restless night, today I was told there was no evidence of disease on my latest scan, the best words I could hear or read.

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Am I overjoyed?  Well, yes and no.  Of course, I am happy to be clear, but there is always that nagging in the back of my mind that I was told I am incurable, and the Cancer is expected to come back.  You know I am stage four, they think the disease is systemic, treatment is palliative rather than curative all that stuff is always there to remind me that good news is only temporary.

On top of all the doom and gloom stuff I cannot shift from my brain, on a day when I get good news, I am very aware of friends both in real life and online who have recently had bad news or are waiting for news and I find it very hard to be sharing my good news.  While I know everyone will be happy for me regardless of their own situation, and I know that being Cancer free right now is very likely to be only temporary, I guess I feel a bit guilty about my current good luck.

Will I be celebrating?  Sort of, bubbly does not really go too well with chemo, yes I am still on chemo!  That is another reason I cannot quite get my head around the idea of jumping for joy, I am still very much in treatment for Cancer.  I might have an extra bar of chocolate and stuff the calories though!

For now its good news for me, I can get on with living for another few months before the scanxiety starts again……!    I need to learn to focus on that and enjoy the moment.

So woohoo, yesssss, woop woop………

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Positive Mental Attitude…..

When you have Cancer you are often told “stay positive”, people say this when they do not know what else to say.  Sometimes it is because they have seen you waiver and do not know how to support you, they do not know that sometimes you just need someone to let you have a bad day and agree with you that it is all pretty shit.

You also hear a lot of Cancer patients moan about being told to be positive, complaining about the pressure it puts on them, saying people do not understand how hard it is to remain positive.

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To some extent, I agree it is tough to stay positive, and hearing that is what you should do all the time can be difficult.  Equally a big piece of me thinks that actually staying positive might just help deal with the crap hand I have been dealt.

So what does staying positive mean to me?  Well, positivity clearly is not going to cure me, it is not going to change the inevitable outcome.  However, being positive might well help get me through this, and no I do not mean telling myself everything will be OK.  Obviously, things will not be OK, but I can make the most of whatever I have left.

Remaining positive does not mean plastering a smile on my face and pretending life is good all the time.  For me, it means not allowing myself to focus on things I cannot change, not becoming consumed with negative feelings.  That might sound a lot like plastering a smile on my face and pretending, but it is not, what it really is is accepting that it is OK to not be OK.  It means not bottling up my worries, having a good cry when I need to and talking about the difficult things.

When you accept the bad things that happen you can start to work out how to cope with them.  If you put it in a box and pretend it is not happening, these things have a way of eating away at you and quietly destroying you.  I will not let Cancer destroy me, I will not let it destroy who I am or take away my happiness.

Yes, I have bad days when my own mortality overwhelms me, and I ask why me?  But I also have so many happy days, and if I am honest there are things I have done and experienced that I might never have done if Cancer had not come along and turned my world upside down.

Before Cancer having got both children into school I had finally embarked on my dream career, I got myself a law degree through the Open University, proudly achieving a 2.1 and had started the next step towards qualify as a solicitor.  I was working as a paralegal and studying at the same time, I was focussed and driven, I wanted to give my children a better future.

I saw a better future in my earning more money and providing a good role model for my children by working hard and achieving in my chosen career.  I dreamt of returning to South East Asia, somewhere I visited many years ago, only this time I wanted to share that with my husband in our retirement.  I had plans, so many plans but many of them might never have come to fruition because, well there was always the future at some point to do this stuff.

Cancer made me realise time is short, it forced me to prioritise and made me choose what I wanted to do because I needed to do that now or never.  Faced with the reality that I might not have too many tomorrows and I might not see my children grow up I realised I needed to spend time with them now.  I quit my legal training, I started home-educating my children one day a week and we went to South East Asia as a family, actually we went to a lot of places together.

You see while it is absolutely the worst thing that has happened to me, being diagnosed with Cancer I mean, it also has been the catalyst for some of the best things that I have done.  I could so easily have ploughed on through life and woken up at the age of 80 realising I had missed my children growing up, and I was too frail to take those trips of a lifetime I had always put off until tomorrow.

So staying positive for me means getting on with life and really living it, and yes that can mean really feeling those emotions good and bad.   So yes have a good cry if you need to, but do not be afraid to have fun, just because there is a bad situation going on does not mean you cannot be happy and enjoy the moment.

Right now life is good, today the sun shone and I was well enough to enjoy it.  Tomorrow is another day and I do not know what that will bring, but I will take it however it comes.

What the Sunshine brings…..

The trees are bare, I can see through the bushes, not a green leaf in sight!  It is winter, it is February, and yet the sun shines and there is a lovely warmth on my skin.  My daughter is wearing a totally inappropriate outfit for the season, but today I do not tell her to get changed because she might get cold, today I would not even believe myself if I said it is not Summer!

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I should probably be worrying about why we are having such an unseasonably warm February, concerning myself with climate change and how I can do my bit to fight this.  I should be thinking about the knock-on effects of this lovely warm day on farming, on the ecosystem, and the environment in general.

Instead of wondering why this beautiful day is here, I find myself instead just wanting to make the most of it, drinking in the warm sun and enjoying the world around me.  I spend a little extra time with the horses, whose rugs I have taken off so they too can enjoy the warmth of the sun on their backs.  I sit outside with a cup of tea and listen to the birds sing.

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My family really do not seem to appreciate today in the same way I do, my son wants to sit on his Xbox, my daughter wants to watch TV, while my husband catches up on admin on his computer.

There are so many things I should be doing, the washing, clearing up the mess my children have made, etc etc.  All I want to do though is get outside with my family, I want to enjoy every moment together and take advantage of every opportunity to do that, who knows how many sunny days I have left.

So I made them leave their electronics and get out in the fresh air, I ignored their grumbling and forced them to enjoy some old fashioned outdoor fun.  We got on our bikes and did not go anywhere special but we did get some all-important vitamin D, and even better family time together.  These are the things I hope my children remember when they grow up, sunny winter days enjoyed and not wasted.

You see knowing your life will be cut short, and enduring cancer treatment, makes you see things differently.  The housework will still be there for someone to do tomorrow, but the sun might not shine.  I might not feel able to take the dog for a walk, go for a bike ride, play with the horses or any number of other activities we enjoy doing together.  I refuse to waste a moment of feeling well, and days like today remind me to really make the most of every second.

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Making the most of things does not mean spending thousands on exotic holidays, or expensive gifts, but just seeing what is around you today and maxing out on that.  Today it was the sunshine, and I totally maxed out on that!

Tomorrow is not promised,  live for today!

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Yes, these blue skies and sunshine really are February 2019!!!

Cancer Diagnosis Time……

Recently I was asked what it was like being told I had Cancer.  I was asked was it a shock.  Really it should have been a shock, I was 37 and was diagnosed with Bowel Cancer which is a Cancer usually associated with being much older, so much so that screening in this country currently does not start until the age of 60 although thanks to some amazing people, campaigning hard, this is to be reduced to 50.

Well, it was not a shock when they actually told me.  You may be wondering how it is possible I was not surprised by the diagnosis, how could I be expecting to hear those words?

Let me explain!  Diagnosis is not a quick procedure, it is not just a blood test or scan and hey presto we know what is wrong with you, you have Cancer!  It definitely was not like that for me.

What actually happened was something like this:

  • Trip to A&E with suspected rectal prolapse, insides returned to their rightful place and told to return in three months
  • Appointment with consultant colorectal surgeon, discussion about what happened in A&E, referred for a camera up the bum
  • Bum camera reveals polyp (a growth in my bowels that should not be there), told I needed a camera with a longer reach to view the whole of my bowel and not just the bum bit to look for more polyps and to remove the one they found, biopsies are taken
  • MRI scan to see if the polyp has grown outside the bowel
  • Next camera reveals the polyp is too complex for the team to remove, further biopsies taken
  • Appointment with consultant, told pre-cancerous cells found and they need to refer me to a specialist hospital for another camera and polyp removal
  • Specialist hospital removes polyp and their camera finds more smaller polyps which are also removed
  • Receive letter for an appointment for a CT scan of chest, abdomen and pelvis
  • Have CT scan
  • Attend appointment with Consultant endoscopist who tells me they found cancer cells and I will need an operation and have been referred to a colorectal surgeon

So you see when they found the polyp the first thing I did was jump on Google.  Of course, I know Dr Google is a bad idea, but I cannot help myself I need more information.  Straight away I see that polyps can become cancerous, so while I also read that it takes 10 years for a polyp to become cancer and that most do not become cancer, I now know that cancer is possible.

The biopsies and MRI seemed to suggest that the polyp was not cancer yet, which was something I held onto until I had the polyp removed and received the CT appointment.  Why would they want to scan my whole torso?  Yup, lightbulb moment, they wanted to see if there was any cancer anywhere else in my body.  They must have found cancer in the polyp!  There you are, I know at this point that I have Cancer.

So you see when the consultant endoscopist told me the lab results on the polyp she had removed I was not shocked to hear that they had found Cancer.  What was a bit of a shock was hearing they had not got clear margins and they wanted to remove a chunk of my bowel along with surrounding lymph nodes.

Diagnosis is a long drawn out process, I went to A&E in April 2016 and was diagnosed in the September, that is 5 months of procedures and appointments.  It does not end there though, because once you know you have Cancer you then have to wait a little bit longer to find out the staging.  Staging cannot be done conclusively until the surgery has taken place, well in my case it could not, they needed to get the rest of the tumour and the lymph nodes out before they could confirm the stage.  Initial staging took place a month later, after surgery.

Was it a shock, no, I already knew I had Cancer by the time I was formally told.  It is more of a gradual dawning on you that happens through an unavoidable process that is the sequence of diagnostic procedures.

There you go that is what is was like for me being told I had Cancer!  And, yes, honestly the 5 months of procedures and waiting for results of various tests was far worse than the actual diagnosis, believe it or not! Once you have a diagnosis you know what you are dealing with, you get a plan of action and you can start to get on with it.

With a Cancer diagnosis, a new chapter in your life starts, for some, it will remain just a chapter, a blip, for others like me it becomes your new normal but again that is something you only find out in time.

 

 

 

 

 

Bowel Cancer UK Symptoms Diary

Well, what a few days, Wednesday 6th February was the launch of the Symptoms Diary that has been produced with the help of Bowel Cancer UK!  Did I expect to be all over the papers, absolutely not!  Has the publicity raised awareness, I really hope so.  More importantly has it drawn attention to the symptoms diary which was the intention, I think so but maybe not to the degree I would have liked.

Screenshot_20190206_065501Do the tabloids mis-quote people and invent facts?  Well this last week confirms the answer to that is definitely yes, while it is a fact that I have stage 4 bowel cancer, I have undergone many major procedures, and had I been diagnosed sooner things might have been different for me, it is not true that my GP told me I was too young nor did I have an operation in relation to peripheral neuropathy.

What have I learned about talking to the media? A few things, firstly if you do not give them enough information they will find it by searching your social media and personal blog, which as the information is already public I can’t complain about.  They will add their own embellishments and not everything they report will be correct or accurate, in fact some of it they will totally make up.  If one paper reports the story, others will pick it up, and they won’t ask you anything they will just rewrite the story and add their own imaginary quotes and even events.

For me the sole purpose of talking to the media this week has been to promote the symptoms diary, yes I needed to reveal some background as to why I wanted to develop the diary but I had hoped that there would be more focus on the diary itself and how it might help other people.  So as the papers have largely skipped over the abundance of information they were given preferring to focus on what I have been through I thought I would outline what this diary could do and how it could help you!

  • If you feel uncomfortable starting the conversation with your GP you can simply present them with the completed diary
  • You can accurately record your symptoms to allow you to provide your GP with a clear picture of your circumstances
  • Your GP will be able to assess the severity of your symptoms with a simple glance, allowing additional time in your consultation to discuss the finer detail
  • It may assist your GP in differentiating between bowel conditions and deciding appropriate next steps, whether that be further monitoring, treatment, or referral for further investigations
  • Should a referral be appropriate your GP can make a more detailed referral ensuring the correct referral type is made

There may be other benefits but these are the key ones I think will make a difference when attending a 10 minute consultation with your GP.

How many people go into their GP surgery and underplay their symptoms, because they don’t want to be seen to be a hypochondriac, or they are embarrassed to talk about certain bodily functions?  How many people walk out of the GP surgery and think “I forgot to mention that”?  But you don’t go back to mention one small thing!  How many people when asked when they first noticed something cannot accurately remember?  Life is busy and we often put things to the back of our minds and can’t be sure whether it was two or three weeks ago we first noticed it.

Should you panic if you are experiencing some of these symptoms?  No, do not panic, most people won’t have bowel cancer.  So if most people won’t have bowel cancer why complete the diary?  The answer to this is simple, there are lots of different bowel conditions most of which are much less serious, however, some do put you at higher risk of developing bowel cancer.  It is therefore important to get the right diagnosis, not just to get the right treatment but also where appropriate the right monitoring.

Please make yourself aware of the symptoms to look out for, and when it might be appropriate to ask your GP to consider referring you for further investigations.  Please take a look at the Bowel Cancer UK website where you can download the symptoms diary should you feel it might be of use to you, here is a link: https://www.bowelcanceruk.org.uk/about-bowel-cancer/symptoms/

Language and Cancer……

There has been a lot of talk today about changing the language around Cancer, do we really need to change the language or do we need to revisit our interpretation?

I really do not think people intend to offend, quite the opposite their intention is to offer support and it is us who take offence.  Can we not just take what is said with the intention it was said with?

I like to think human beings, in general, are waging a war against Cancer with all the research, raising of awareness, improved medical treatment etc that is happening and being invested in.   I hope for my children’s sake that the human race wins that war.

I may not be able to personally fight my Cancer, but I do have battles to face along the way, I have had to fight for referrals and be my own advocate in getting the best possible treatment.  Some mornings I have to battle against the fatigue to muster enough energy to get out of bed.  I have had to navigate the benefits system and fight to ensure I am getting anything I am entitled to, now that was a battle.

Am I brave or inspirational? Not really I’m just doing what anyone else would do in my shoes, because despite Cancer right now life goes on.  Am I offended by people calling me brave or inspirational?  No, I am not, I understand they just do not really know what to say and they have no idea how I am feeling or what I am going through and that is not their fault, they are just trying to be kind.

If we need to change the language around Cancer what else do we need to change the language around?  When someone is grieving a loved one do we need to stop offering condolences by saying “I’m sorry for your loss”? I mean, they have not just misplaced their loved one, they’re not lost, they died but most of us find it difficult to know exactly what to say.  I am fairly certain though that the grieving are not offended, they appreciate your acknowledgement of their grief.

I appreciate others acknowledging the difficult time I am going through, it is really tough at times, and I would rather people talk about it and to me and maybe get it wrong than ignore it.  The more we are willing to talk about these things the greater awareness we can raise, and the more lives we can save, and I worry that by complaining people use the wrong language we might just discourage people from talking about Cancer altogether for fear of offending.

Does it upset me when people tell me to stay positive?  No, I see them as trying to offer me support, I do not feel any pressure to keep smiling when I feel ill, and I do not feel they are suggesting that a lack of positivity would in any way contribute to my decline.  I do however do my best to look for the positives in my situation, I find this makes it much easier for me personally to accept and deal with circumstances beyond my control.

If I die from Cancer will I have lost the fight?  I think not, I hope I have contributed to others not landing up in my shoes by encouraging people to talk, take notice of symptoms and be more aware.  I hope I have made a difference to some and helped people feel more comfortable going to their GPs and requesting tests.  This is my contribution to the war on Cancer and while I may still lose my life to Cancer the war is far from over and I did will not have lost the fight, I have had many victories since my diagnosis and I hold onto them.

Would I be offended if someone in trying to find the right words when talking about my death refers to me as having lost the fight?  Well, I will not be here to be offended.  Should my family be offended, I think they should take it in the spirit that it is said which I have no doubt will simply be someone doing their best to be thoughtful.

Why do we feel people are suggesting we are weak if we lose the battle?  I do not think in any way that people think we are weak, or that we could have done more to live, they are just trying to find a way of expressing that we have died following an illness that we dealt with for a period of time rather than suffering say a heart attack.

Can we all please stop worrying so much about whether people are saying the right thing, or using the right language and start focussing on the intent behind what someone is saying.  Can we start graciously accepting the kindness of others?

I apologise if anyone is offended by this post, that is absolutely not my intention, everyone is different and I know many will have a completely different view to me, however, I can assure anyone talking to me they do not need to think twice about which words to pick when offering support and kindness.

 

Talking to Someone with Cancer

I see lots of articles and posts about what to say or what not to say to someone with Cancer.  Some of the advice I agree with and some of it I am not so sure I do, and I guess that is because everyone is different and what might be OK to say to one person is most definitely not OK to say to another.

You might think it was quite obvious that saying something like “My friend’s mother’s aunt’s cousin had Cancer, she died”, but actually I get this quite a lot. While it’s probably not the best thing to say,  I think when people say things like this it is because they really do not know what to say.  People get flustered when they don’t know what to say and sometimes blurt out the first thing that comes to mind, and I am pretty sure the last thing they want to do is upset or offend anyone, they may even walk away thinking “what did I say that for?!”

So what should you say when talking to someone with Cancer?  Well, I really do not want to tell you what you should or should not say, I have quite a dark sense of humour and what would be absolutely fine with me might have someone else in tears!  I might also be guilty of sometimes not knowing what to say to someone in a difficult situation, and possibly putting my foot in it, so I am not sure I am in any position to tell people what they should say.

I do have Cancer though and also know quite a few others with Cancer, so obviously I have some thoughts on this subject.  Some people are happy to talk about their Cancer, others really do not want to discuss it at all and want to talk about anything but Cancer.  The only way to know is by the talking to the person, if someone does not want to talk about it they may tell you straight they do not want to talk about it, or they might change the subject, or appear distracted or subdued.  On the other hand, they might want to talk about it, they might be relieved to talk, and they might start telling you more than you expected.  I would suggest taking their lead and going with it.

It is important to remember that someone with Cancer is still the same person they were before their diagnosis.  If your friend has a hobby, or an interest they will still enjoy doing the same things to pass time.  If you know something in the news or on social media will have made them angry, upset them or made them laugh and you would usually text or call them, then do just that because while they have Cancer life does go on and they are still living.

So really I guess what I am saying is just be you and say whatever you feel at the time, and you know what you are only human, you might put your foot in it but I am willing to bet your friend will forgive you and just be grateful of your friendship.  There is no right or wrong thing to say to someone with Cancer, and guess what, we are only human too!

 

 

Talking to Children About Cancer & An Incurable Diagnosis…

When you are first diagnosed with Cancer if you have children they will be your first thought, particularly if they are young. Being diagnosed at the age of 37 with a 6 and 8 year old at the time I had planned writing their birthday cards for years to come and letters to them for special occasions before I even had a treatment plan.

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Initially I was diagnosed at stage 3 and given hope that I could be cured, I explained to my children that there were some bad cells in my body called Cancer and that the doctors would remove them, and I would then have some nasty medicine for a few months to try and kill off any cells the doctors could not see. I explained the nasty medicine would make me feel poorly for a while. I was careful not to promise the children that everything would be OK, I did not want to make promises I could not keep.

In the beginning, I did not feel the need to look for help in talking to my children, I was hopeful that things would all turn out fine and they would not need to know any more than that mummy had been sick for a while but was better now. Unfortunately for me and my family some months after completing my first lot of chemo I was told the Cancer was back and now in my lungs.

This time I was told my Cancer could not be cured, there was no surgical option for me and I would be on chemotherapy for the rest of my life, however long or short that might be. I had no idea how to tell my children, all I could think about was that I was going to die and would not be there to support them. I wanted to find support and help with talking to my children.

I searched the internet for help, I found lots of information from Macmillan, but it was very generic, I really wanted to talk to someone. I was lucky and the hospital I am currently treated at has a family psychology department that I was referred to. I was able to talk through how I planned to talk to the children and what I planned to put in place to support them and get confirmation I was doing the right things.

I thought it might be useful to others to share my experience of talking to my children, I am now 39 and my children are now 8 and 10 years old. I decided to keep things very simple, but truthful, I also decided to drip feed information so as not to overwhelm them. I often take time to process information myself before telling the children, if they ask me about appointments and I’m not ready to talk I simply tell them that I will tell them what happened but I need to make sure I understand it all first.

First I sat the children down and told them the Cancer was back, and this time it was in my lungs, I told them that the doctors could not cure me but were going to do their best to keep me here with them as long as possible. I told them that if they ever had any questions or wanted to talk about it all they need to do is ask me. I also told their school and anyone else I thought should know in case they saw signs that my children were struggling with what was happening.

So here are my top tips for talking to children about Cancer and an incurable diagnosis:

  1. Keep it simple
  2. Be honest
  3. Give information in small site size chunks
  4. Be prepared to answer questions
  5. If you do not know be honest and, do not make something up
  6. Be prepared for questions to be not quite what you expect to be asked
  7. Make sure children know they can talk to you at any time, and also that they can talk to others they trust
  8. Make sure other caregivers, friends and family know what you have told the children
  9. Try to make it as normal as possible to talk about Cancer, its side effects and the uncertainty of the future, this will become easier over time
  10. Try not to have conversations you are obviously trying to hide from the children, they will pick up on it and it will worry them, they may also overhear something and misunderstand

Here are some actual questions from my children and my answers:

Child 1: Mummy are you going to die? — Me: Everyone dies at some point, but I might die earlier than we would like.

Child 2: Mummy will you last until the end of the year? — Me: I hope so!

Child 2: Mummy, if you die, will Daddy marry someone else? — Me: He might, but that’s OK because I want him to be happy

To be honest, my children have not really asked many questions, and the questions do ask come at the strangest times, definitely not when you expect them!

So far my children seem to be coping well, their school has not raised any concerns and they seem comfortable to talk about what is happening with me.

I am sure others can add to my top tips above, and will have many other questions they have been asked by their own children. Perhaps when sharing this blog anyone else with experience of this situation may be prepared to share their own experiences…… And if anyone out there has any questions for me I am always happy to talk to others, I am happy to do anything that will help raise awareness or help others in my shoes.