A while ago I posted a blog about cancer research charities and where does your money go.  I also mentioned about how my attitude to cancer was before my family became a victim to it and how quickly and drastically ones attitude can change once you lose a family member to this disease and for me/us, it was our Mum.  Firstly before I go any further on this, if you would like to see the link to that blog here it is in case you would like to read it:

https://jotitmedown.wordpress.com/2012/12/10/cancer-councilcancer-research-not-just-faceless-charities/

So cancer had hit my family and devastated us, turned our lives upside down, hurt us, made us angry, we asked questions, we still have no answers and the question that remains in our minds is ‘Why?’ – why our Mum? why our family? why anyone? and why have they not found a cure yet?

But we all got on with our lives, we had to manage the best way we knew how and that was to just carry on.

My Lovely Mum

We came through it as a family, we emerged at the end of a dark and depressing tunnel, we ‘did the deal’ with God and hedged our bets by doing the Cancer Research UK charity fundraiser ‘Race for Life’ where events are set up around the United Kingdom and women all group together to run (or walk) 5km to raise money for the cause because we did not want anyone to go through the pain of a diagnosis of that kind as it is not something you would wish on your worst enemy.

Besides we had suffered cancer once in our family, life would have to be a bitch to strike again – wouldn’t it?  Well I would have (naively) thought so, but I was wrong – we were all wrong.

The following is dedicated to my brave sister Julie

Me (left) and my sister Julie (right)

Julie like many of us at some point in her life, had exhibited some bowel/intestinal symptoms, nothing major and like many of us tend to do with health issues; ignored it until those symptoms became too much to manage until she eventually went to the doctor who referred her to a specialist.

A biopsy was taken and while various tests and scans had been ordered, Julie carried on with everyday life as best she could except now the biopsy had been taken, it had left her in excruciating pain.

I live in Australia but each day I would ask my Dad ‘Has Julie got her results back yet?’

I had briefly toyed with a diagnosis of cancer but only briefly, after all it was too painful to contemplate and if I am honest, I was in that famous Egyptian river of ‘Denial’ because I did not want to believe cancer could even be a possibility.

A day to remember

I remember the day that Julie got her results back as clear as though it were yesterday.  I was doing a video call with my Dad (Face Time) and Julie had called my Dad on his mobile with the news.

She was at the hospital and had been called in to get her results to be told that she had rectal cancer, Julie was on her own that day and you can imagine how devastating it must have been to be told that when you have nobody with you?

Julie broke the news to Dad over the phone while at the same time I sat at my computer and watched Dad’s face on the video call.  As she told him the news I saw Dad’s face fall as he said ‘Cancer, Oh no’.  I also remember feeling sick, dizzy and wanting to scream ‘No, not my sister, not my family, not again!’

That very afternoon Julie was to see the Macmillan Cancer Nurse specialist. And in the space of a few hours – Julie’s life had changed and yet again that bastard called ‘Cancer’ had invaded our family.

Why had this happened? Why our family again and why Julie? We had all done Race for Life and we had all donated to cancer charities, where was this cure that the experts kept saying was so close?

After diagnosis – plan for treatment

To our relief the scans had shown that the cancer had not spread. Never have I been so happy to see Julie’s face on video chat to tell me that news and apparently the success rate with treatment was high which trust me, is something to hang on to and be happy about.  When it comes to cancer; you learn very quickly to take each day at a time and be thankful for small blessings.

Julie was to have a couple of weeks (spaced apart) of intensive back to back high dose chemotherapy and spend 5 days in hospital and also an intensive cycle of high dose radiotherapy aimed directly at the area.

The chemotherapy made her sick, like really sick – imagine nausea in its worst form and then double it.  Imagine not being able to eat normal foods and what you can eat is so limited and Julie could only tolerate baked potatoes and even then, that was a struggle.  Strong cooking smells made her sick (and still do) and to add to that little bundle of side effects, Julie also gets mouth ulcers so even the limited food she can tolerate hurts her mouth terribly.

Being in hospital was exceptionally hard for Julie, you forge friendships with people whose treatment may not be as successful as yours and the outcome often devastating, these people become your friends in a way that no-one else can understand and if anything should happen to them, it is taken personally and hits hard.

Julie tells me that she is a member of a little club called ‘The Radiotherapy Club’ where she and other patients have become friends, forged bonds and have plans to all meet up and go out for a meal once they are well enough.  It is an exclusive club that only they will understand and anyone that has not been through what they have, would not belong.

Work was and still is out of the question for the time being, although Julie has finished her cycle of chemo/radiotherapy for the time being, she is still too unwell to work.  The UK benefits system is as such that whatever Julie is entitled to, will not cover her living expenses so that is another worry added to her pile – finances.

Pain – anyone that has had radiotherapy will tell you how much it hurts/burns and Julie has  severe ulcerated burns to the radiotherapy target point on her body – pelvis/groin area, and a couple of weeks ago these became infected and she had the beginnings of septicemia and was treated with high dose antibiotics.  In fact, Julie informs me that her fridge is full of medicine instead of food and that painkillers are now her best friend.

Well meaning ‘advice’

People are generally well meaning but Julie also had to contend with other people telling her what she should and shouldn’t be doing and how ‘herbs can cure cancer’ and you have no idea of how offensive that can be to have someone say that to you.

Julie has quite rightly decided to have faith in her doctors and specialists and put her trust in them to fight her disease and whilst she is touched that other people are thinking of her, conventional medicine is the path she has chosen.

Because at the end of the day the only person that can truly understand what chemo and radiotherapy is really like, is someone that has gone through it themselves the rest of us can only guess.

Where is Julie at now?

Julie is waiting for her next scan which will tell her if the treatment has worked or if she will need further chemo/radiotherapy and/or surgery and is simply taking one day at a time.

So much has happened in a relatively short space of time but she has done it, she has gone through treatment that has made her sick, shut down her immune system and caused intense pain and infection.

Julie has made friends of equal bravery and strength and has been on the biggest learning curve and journey of her life.  A journey that she has had to go on and no matter how hard it becomes; when it comes to pain, fear, and difficult treatment choices, she travels it alone when it comes to the overwhelming fear and thoughts that march through her head at night.

Why?

Once again my family are asking ‘Why?’ Why has it affected our family again? Why have they not found a cure for this disease, we have hedged our bets and done our bit for cancer charities, we always drop money into the tin, I have done Race for Life a couple of times or more so why?

Well whilst I don’t know the answer as to why cancer has turned up uninvited into my family yet again, I do know that in order to find a cure for it; the research has to continue and running in ‘Race for Life’ a couple of times is not enough.

Because when it comes to cancer and a cure – it is one race that you have to keep on running in – for as long as it takes, you run it for yourself, you run it for your loved ones and while you are running that race; you pray that along the way the money that you raise will find that elusive cure.

Colo-rectal Cancer – don’t die of embarrassment

As quoted from the cancer research UK website, the earlier this cancer is detected, the easier it is to treat and the better the success rate.

If you notice any change in your bowel habits – the slightest of things that are not normal for you, then swallow your pride and embarrassment and go to your GP.

If you have a family history of this type of cancer then ask your GP if you can be screened because early screening detects the potential for cancer before it develops.

I myself, have just had my colonoscopy to screen for this type of cancer and I am ashamed to admit that I have had symptoms for about 10 years – bleeding when I go to the toilet, constipation  etc.  As I have an auto immune disease, these symptoms often go hand in hand with that; and that is what I put it down to.

Not wanting to go through that embarrassing examination, I just lived with the symptoms.  Then when Julie was diagnosed my embarrassment seemed well, now embarrassing if you like and I swallowed my pride and saw my GP who organized a semi urgent referral to our local hospital.

About a month later I was called in to have a colonoscopy which in the end, the most unpleasant part of it was the fasting and having to drink some vile lemon tasting stuff that cleaned out your bowels!

The best part of that colonoscopy was the doctor telling me that everything was normal but as I was a high risk (family history), I was to have them done every five years and to me, that is a small price to pay for early detection.

So please listen to your body because if your bowel habits have changed, if things don’t feel quite right – then get it get checked out because chances are that it may be nothing but until you get it checked, you will never know and you might just find that the embarrassment that stopped you going to your doctors in the first place, will be the very thing that could turn your life upside down if you are diagnosed with a cancer that could have been treated or prevented.

If you would like more information on bowel cancer – here is a link to the Cancer Research UK site.

http://www.cancerresearchuk.org/cancer-help/type/bowel-cancer/about/bowel-cancer-symptoms

 A message to Julie

Julie, I don’t know how or where you have found the courage to deal with what you are going through and I am in awe of your bravery.

Having such aggressive treatment that makes you feel so sick and causes you so much pain is hard enough but having it on such an intensive basis with each dose making you more sick than the last is even harder, yet you don’t complain and you get on with it and handle it with dignity and strength.

You are unable to work due the effects of the drugs, and because of the area that the radiotherapy is aimed at, even basic things that we take for granted such as walking and ordinary movement must be so excruciatingly painful for you.  Yet you still force yourself to get out and about to keep yourself moving.

As you know, Race for Life became significant when we lost Mum – we did our bit, not expecting cancer to hit our family twice.  But it has and once again, we realize that life goes on and as long as we are alive we have a life worth fighting for.

Which is why I am so damned proud of you for entering Race for Life this year when I know how crap you are feeling and how hard it will be for you, both physically and mentally.

So no matter what this disease chucks at us, we are and always will be ‘Team Stocken’ and we will fight it, and whilst I can’t be with you all to do the run, you can bet your life on the fact I will be thinking of you every step of the way.

‘Team Stocken’ – a force to be reckoned with

Good luck for the race Julie, I am so proud of you and I love you so much so don’t ever forget that.

Cancer Research UK – ‘Race for Life’

This particular race has never been more significant than it has for Julie and this time she is not just doing it for our Mum, she is doing it for herself and ultimately to raise money to fund treatment and a cure.

This time she will not be competing as a healthy woman, she will be competing with  cancer but don’t be fooled, she is far from a victim.  Julie will still be fighting the highly toxic effects of chemo/radiotherapy and she will do this with one aim and one aim only and that is to raise as much money as possible.

Every single donation is significant and will inspire Julie and every km walked will pose a painful challenge for her but I have every faith that she will do it.

Cancer does not discriminate and it is a chameleon in the sense that it takes the face of each and everyone that it affects and knows no boundaries.  It turns up in your family uninvited and no matter how many times it does, we have to keep fighting it to find a cure and we cannot give up on the belief that one will be found.

Don’t wait until you become a victim of cancer before you start supporting cancer research, so please – ‘keep on running’.

Here is the link to Julie’s page if you would like to donate.

http://www.raceforlifesponsorme.org/juliestocken50

Samantha Rose (C) Copyright May 2013