Monthly Archives: May 2014

Cancer Etiquette

 

I want to apologise in advance for the following blog. I have been blessed by the support of literally hundreds of people. This has made the power of difference to me and my family. For that we are all eternally grateful. Furthermore I appreciate cancer is a bit like Voldermort. It’s an evil darkness which shall not be named. The impact, like dementors, have the ability to suck the happiness out of everyday life. Understandably people don’t know what to say or what to do at times. It’s an awkward subject which is why I feel the need to share a few tips on what I have found to be good etiquette when talking to someone with cancer. Apologies in advance if you read this and think ‘I did that…’ I know your intentions come from a good place but here are my top 7 tips:

1. What not to say #1 STOP EATING SUGAR, MILK, MEAT
Don’t tell me I am poisoning my body by eating the above. Don’t tell me I am feeding my cancer by eating the above. Please don’t tell me what to eat and what not to eat. I get hangry at the best of times (hunger = angry) Combine that with nausea which stops me eating at all and then I get rage! I don’t have cancer because I have a bad diet. In fact I have a very well balanced diet. I don’t care if you read an article about how fruit saved someone’s life or how a water only diet cured cancer. Unless you’re someone I’ve made an appointment with who is advising me on how to combat the side affects of chronic diarrhoea then I don’t want to know.

2. What not to say #2 WHAT IS THE NAME OF YOUR CANCER?
This tends to be followed up with a ‘I want to google it’ or ‘my friend’s uncle’s daughter is a doctor….’ Why do you need to know that much detail? More importantly think about the timing of that question! I have good days and bad days. The trigger for a bad day can be anything from abdominal pain to a visual reminder of the challenge I’m facing. Please text me – ask me how I am, ask me for coffee but please don’t just text me asking intricate details of my cancer. It has the ability to turn a great day into a mediocre day!

3. What not to say #3 I HAVE DONE LOADS OF READING ON THIS, WHAT STAGE IS YOUR CANCER AT?
This is somewhat similar to the points above. Unless you are my oncologist, gynecologist, radiologist or specialist nurse then you’re research means diddly squat to me! Yes, at times I want to talk about my cancer but it won’t be because I want a second opinion from you. Leave it to the professionals!

4. THE HEAD TILT
This is a subconscious thing. People no longer ask me how I am without craning their neck to the side and adopting big puppy dog eyes. I am fine and what’s more I am still Heather. You don’t need to have sympathy for me. I am still enjoying my life so crack a smile and ask me if I’ve heard your latest gossip!

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5. JUST BE YOU!
For the majority I feel fine. I have an ongoing battle in bowels, I’m constantly tired and my weekly schedule revolves around hospital visits but I am still me. I am living for the weekends now and the best medicine for me is normality. Providing I feel up to it there is no reason I can’t have the odd game of hockey, go for a sober dance or join in whatever other fun activity the Summer months bring. Please don’t feel like you’ll offend me for treating me like normal. Similarly, just because I have cancer doesn’t mean your problems don’t exist or matter. You can still talk to me about them!

6. COP A FEEL, GET A SMEAR, USE THAT BOWEL SCREENING KIT & IF YOU HAVE ANY REASON FOR SUSPICION GO TO YOUR GP
This is THE most important lesson I want to share with the world. I suffered symptoms for 3 months before being diagnosed despite several visits to my GP. A very clever doctor told me upon diagnosis that cancer is one of life’s lotteries; some people get cancer, some people get hit by a bus, some people get on a plane to Malaysia never to return. There is no rhyme or reason for it so to whoever is reading this do yourself the favour of taking care of your body – it’s the only one you will ever have! They say the best protection is early detection so lads – grab your gonads! Ladies – feel your melons, lemons or prunes and get a smear! I never saw this coming and if nothing else I hope this message helps prevent you from ever sharing my experience.

7. THINGS I HAVE FOUND SUPER USEFUL
Aside from my army of supporters there are a few things I have discovered to be super useful…
To help me through my bad days I created a #FUCancer scrapbook. This has pages illustrated and dedicated to my life goals, messages and photos from friends & family and a collection of inspiring quotes. It is a great point of reference for me and gives me strength on the days when I need it most. Thank you to everyone who has contributed!

Timetable and lists! Being a self confessed control freak this one might just be for me but I have put my love of excel into good use by creating an online doc and whiteboard so loved ones can be kept upto date with changes to treatment. It also serves a great place to tick of those days as they come and go – very satisfying!

When friends and family pose the question ‘What can I do…’ Or ‘what would you like to do…’ It is a great opener. I love an open ended question!

My nephews, brother and sister in law prepared a box of treats including ginger tea for nausea, loose tops for chemo and cream to combat the sunburn from radiotherapy. It was prepared with a great deal of thought and is continually being referred to now. My heavily pregnant friend Jen (how did you find the time?) prepared a similar care package filled with the perfect ingredients for relaxation as well as my personal #FUCancer mascot!

The motivational text! I am not a hero, I am not brave and I am certainly not inspiring but it is nice to get the unexpected text being told how loved you are. Again, these are something I’ve saved for the tough days when my meds keep me up all night. It’s a reminder I’m not alone. So thank you to the motivational texters!

So there you have it…
My personal buzzfeed on cancer etiquette. I want to stress that I do appreciate all the messages and thoughtful words. I have been overwhelmed by the response and support I have received over the past 7 weeks. The purpose of this blog is not to offend anyone – I just want to share my story my way. Everyone’s story of cancer is unique and personal. But just like Harry Potter I will be triumphant against it-which-shall-not-be-named!

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Week 3 – nearly at the half way point and I am feeling strong.

After two full weeks of treatment I am getting more accustomed to the side affects involved. Prior to treatment starting I was warned of the range I could experience. As per my previous blog the main issues have been my unhappy bowels and the fatigue – chronic fatigue! I am shattered!

Within the first few weeks of being diagnosed I felt increasingly aware of cancer in the media. It was everywhere. Every commercial break on the TV, between songs on the radio in your car, packing your bags at the supermarket – even clothes shopping I found myself being asked to donate old clothes for cancer research. During this time I found myself following Stephen Sutton’s inspiring story and similarly learnt about the death of Elena Baltacha. I found the profile of cancer at this time – parallel to my diagnosis – overwhelming. I wanted to throw my fist in the air and shout ‘F*ck Off’ but knew it would only provide a satisfying relief for a matter of seconds. Knowing there is a force inside you that is actively attacking your body, your health is something I can only describe as feeling alien. I am a healthy girl who exercises daily, I am conscious of having a well balanced diet, I don’t smoke, I don’t drink (regularly) – it simply doesn’t make sense how this can happen. On a couple occasions I took myself away from my army of support to sit and cry on my own. Once I was alone in the bathroom and the other I was alone in my car. The intent of both was to try and escape from what was happening but I found myself increasingly reminded of that fact there is no option of escape. Cancer is something living inside of me. Having a better grasp of this now I no longer feel the need to lock myself away to cry! It is far more manageable when I have Iceberg to wipe my tears or the Funny Boy to make me laugh. (On a side note the Funny Boy does an excellent impression of the characters from Made In Chelsea – always guaranteed to put a smile on your face!) Furthermore I think it is quite selfish excluding my loved ones when they are enduring this marathon too. 

http://www.theguardian.com/society/2014/apr/25/having-cancer-not-fight-or-battle?CMP=twt_gu

Amidst the plethora of articles and advertisements in the media I stumbled across the article above written by a lady who has cancer. It is a well written article which I believe to be valid, refreshing and potentially controversial. In summary the author disagrees with the use of wartime rhetoric language such as battle, fight, survivor etc. She continues to question why people describe her as being brave when her experience of cancer is something she didn’t elect to do. This is something I can definitely relate to. I have had countless messages of support from friends, family and mere strangers commenting on my bravery and strength. All of this is music to my ears and ego however I feel a bit like a charlatan. I didn’t sign up to this. I don’t have a choice as to how I respond to it. What’s more is I have turned into a bit of a diva over the past fortnight. Due to nausea I am struggling to eat my normal foods in a the pattern I am accustomed to. This has led to the Funny Boy being an on-call delivery boy turned chef. He has been known to make me hot dogs at the drop of a hat, cream tea in the middle of the night and my current favourite carbonara at a moments notice. Speaking of which I have a hankering for a curry now! In my eyes it is the Funny Boy who is being the hero. He is the one putting up with my highs and lows, my crazy cravings and the reluctant bowel movements. Although we have discovered a bubble bath and candles can cure almost anything (whilst masking any unpleasant smells!)

In response to the article’s title regarding terminology for me the war like language can stay. I have compared my ‘battle’ with running a marathon because I do see it as a challenge. Similar to the author I have days where cancer takes over; nausea, grumpy bowels and uncontrollable emotions leave me feeling vulnerable. Thankfully these are few and far between. I am realistic in the knowledge it is a long process with a lot of hurdles however I am still experiencing great highs; Getting engaged, moving in with the Funny Boy, planning our wedding, spending time with Conor and Ryan, gossiping with a friend – life is still great! Last week I had my details confirmed for being a Batonbearer for the Queen’s Baton Relay in celebration of the Glasgow 2014 Commonwealth Games. I am certain this will be another high which will lead to a memory I will never forget. On Saturday 14th June at 3.47pm I will be carrying the Queen’s Baton along Hermitage Place in Leith. It was a huge honour to be nominated and I am delighted to have been selected! On Friday 13th I will be the hospital for the majority of the day getting my first bout of brahytherapy under general anaesthetic. This potentially could have an impact on my ability to run with the baton however the doctors and nurses, like me, are determined I don’t miss this fantastic opportunity. So wether it be in a wheelchair, at a snail pace or sprinting like Usain Bolt I will be there! My mantra for this week as I begin to approach the half way mark is to not worry about tomorrow – not only does this rid me of my strength but it stops me from enjoying the here and now. And I right now, I have a lot to be smiling about!

 

 

A mission for all my family and friends!

So it is day 9 of treatment and in true marathon-fashion there has been a series of peaks and troughs. I feel a sense of relief having started chemotherapy and radiotherapy. The medication causes a range of side effects mostly affecting my bowels. I can often be heard going into the loo saying ‘Pray for Poop’ which the Funny Boy has found very amusing. Similarly after having my car washed at the weekend I was furious to find the local seagulls had chosen to redecorate the exterior. Not furious at the mess they had made but furious at how easily their bowels were functioning in comparison to mine! For the first time in Conor’s little life I find myself competing with him as he has recently started potty training! So yes, my bowels are not happy and overall I simply feel shattered but race day is here! The start gun has been shot and at mile 5 I have started at a steady pace and I am feeling strong!

Over the past six weeks I have had countless hospital visits involving a range of doctors, nurses, receptionists and more. Although I am becoming more accustomed with the daily ritual of radiotherapy and weekly sessions of chemo I still find myself with butterflies in my stomach as I approach my next appointment. Very little can help with the nerves. Monday night this week i was up until 5.30am analysing my appointment from the day before and trying not to worry about the day ahead. However there is something which makes each day easier and that is the people who are treating me. I have been amazed, and at times overwhelmed, at how personable and genuine the staff are. My initial diagnosis came from a straight talking Irish lady called Hilary. She was a tower of strength during those initial weeks for me and my family! Upon being referred to my Oncologist I was again pleasantly surprised at how patient she was at explaining the treatment and answering the questions posed by me, Iceberg, Buggernuts and Funny Boy. At chemo I was greeted with two lovely ‘Louises’ who not only made sure I was comfortable but took the time to ask me questions about my engagement. Across the road at radiotherapy there are a team of girls who go beyond the ‘how are you?’ to ask about plans for the wedding. At my first review meeting on Monday I met another friendly nurse who allowed me the time to ask a whole host of questions about my treatment. When I finished she took the time to ask the Funny Boy if there was anything he wanted to ask and acknowledged that this situation affects him too. All of the people above have helped me feel like Heather and not just a patient. Unfortunately this has been a stark contrast when I have had to deal with receptionist staff at my GP clinic. Wether it be over the phone or in person I have been continually disappointed at their curt manner. On one occasion at the waiting room I overhead an elderly lady sign in for her appointment. Initially the lady, who was using a walking stick, was kept standing for at least 5 minutes before one of the receptionists left their computer to come to the desk and take her details. The lady was greeted with a ‘Well, you’re 50 minutes early for your appointment!’. The elderly lady looked a little embarrassed and responded with ‘I was worried my bus wouldn’t get me here on time’. I was disgusted when the receptionist replied bluntly with ‘You won’t be seen any sooner. Take a seat.’ My personal grievances with the GP receptionists are somewhat similar – I feel like I am being an imposition whenever I call. When trying to order a repeat prescription, sick line or change of address it has been met with a series of questions in an impatient tone. I appreciate they are busy and I know they cater for a wide community but they need to remember that everyone is individual and for the majority nobody is out to waste their time. People call the GP when they NEED to – not because they want to. Everyone has their own challenges and the difference a smile can make is huge!

As previously discussed the staff beyond my GP clinic have (in my opinion) gone above and beyond the call of duty which has made the power of difference to me and my family. This is a lesson for everyone and something I am increasingly more conscious of. Everyone has their own personal battle – it could be cancer, it could be heartbreak, it could simply be a crap day at work – but sometimes all it takes to improves someone else’s day is a smile!

So my challenge for you today is:

1. I read once that the things you take for granted, someone somewhere is praying for so take the time to ask yourself: What am I thankful for?

2. Smile at a stranger! You could be the reason someone’s day is made that little bit easier, that little bit better!ImageImage

#FUCancer

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I am sure anyone who knows me would agree when I say I am a positive person. Why wouldn’t I be? I live a fantastic life. I have a whole cast of friends and family who make me feel loved and valued. I have a job where I genuinely believe the work I do makes a positive difference to young people and their families. I live in luxury – I share my home with the funny boy where we have running water, electricity and a plethora of entertainment at our fingertips! Until now I have been blessed with health which has allowed me to do ski seasons, enjoy hockey tours and try any other active pursuits which take my fancy! I have a great life which I am super thankful for. So yes, I am a very positive person.

Over the past few weeks of my current race I have found the ups significantly contrasting with the downs. Being engaged to the funny boy has left me on cloud 9 since the proposal. However I want this blog to be truthful and an honest representation of the challenge I am facing. I do have bad days. I have moments where the fear creeps in and leaves me feeling out of control of my emotions. I get bitter, angry and on rare occasions I lash out at those closest to me. I have moments where I can’t bring myself to answer my mobile or read messages from friends. At times I just feel trapped. Being a proactive person it is difficult to be told to just wait! I feel like I could be doing something, like I should be doing something. But there isn’t anything I can do. At times I just feel helpless and I have learnt to accept that it is ok to be sad sometimes. The admission of my feelings doesn’t change the fact I am a positive person. Cancer has just taught me that I have even more to be thankful for! My situation is crap but in comparison to others I am super lucky! Anytime I do feel trapped I am reminded of how many people I have cheering me on. Wether it be my mum serving me my favourite salad, the buzz of my mobile or a very welcomed email from an old friend – it all helps! It reminds me of my fantastic life.

Upon the eve of treatment beginning I am with the funny boy planning our engagement party. I am back on cloud 9 and feeling strong. So to the people who have continued to call, send cards, letters, texts etc please don’t stop. And to those unfortunate souls who are on the frontline with me especially (Iceberg, Buggernuts and Funny Boy) please forgive my rantings when I’m in a rage, thank you for allowing me to have my sad moments and especially for being there to brings me back to my positive normality. So in the positive words of my big brother: Tomorrow is the 1st step on road to recovery and one day closer to my wedding!

Bring it on! #FUCancer

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A little and a lot!

It is officially four weeks on since I was diagnosed with cervical cancer. A lot and a little has happened in a relatively short timeframe: I have had a PET scan, a CT scan, two further planning meetings and three new tattoos. Treatment begins a week today which will be combination of chemotherapy and radiotherapy. The most common question in response to that is ‘what about your hair?’ and I am relieved to say that my golden-locks are safe (otherwise I would be raging having spent a fortune getting my roots done!) Anyone who has ever been through this will no doubt agree that when you get a diagnosis you want treatment to begin yesterday. Waiting is frustrating. Every bodily function, every pain, every niggle you automatically think ‘It’s the cancer!’ Even the funny boy had to laugh when I claimed my hiccups were related to cancer. The prospect of treatment doesn’t scare me – don’t get me wrong; the idea of feeling nauseous, enduring sunburn and various other side affects doesn’t sound like the best fun. Saying goodbye to the prospect of motherhood has definitely been a grieving process for me. So yes, with regards to starting treatment a little has happened however I am ready to tackle this head on. I am young, fit, strong and I have an army of people supporting me!

My army of family and friends have been amazing. I have been flooded with supportive messages, inspiring words, thoughtful gifts – I love my FUC bear (http://designer-j.co.uk/). Old friends, new friends, friends of friends all going out of their way to say something. I appreciate how difficult it can be for some people. You don’t want to say the wrong thing but you don’t want to say nothing either. As I said previously this is a marathon and it is great to know you have people at the finishing line but it is even better knowing they are running it with you! My family and the funny boy have been particularly outstanding…

My mum is now known as Alma ‘Iceberg’ Williams. For those of who you have met my pocket sized mother you will understand what I mean when I say she is petite. To look at you probably wouldn’t back her in a fight, but you would be wrong! She may look small but she has the strength and power to take down the Titanic! Out of everyone she was the person I was most nervous about telling. I assumed she would cry and ask ‘why’ – I was wrong. She has helped me with every emotion and supported me through every step of the marathon so far.

Then, there is my Dad. He is a classic Dad. When it comes to ‘lady-things’ he doesn’t want to know. He doesn’t understand womens’ bits and nor does he want to. Who could blame him?! I can only imagine being told your daughter, your only daughter, has cancer is a parent’s worst nightmare. Top that by it being cervical cancer and a whole host of awkward conversations then it is definately a dad’s worst nightmare. Yet, my dad has amazed me! He has attended every appointment, listened to every consequence of treatment and held my hand through it all. My dad already had the nickname ‘Buggernuts’ – it doesn’t seem appropriate to rename him Amazeballs but that is what he is! Amazeballs!

The siblings (Owain, Gags & Angela) and the nephews (Conor and Ryan aka Ryno (apologies Ryan you will hate that name one day)) are top pacemakers too! Each showing their support in their own way. My nephews have prepared a superb pack of FU Cancer treats which are in my bag all set for next week. Angela has been an ear for me to rant and rave when needs to be. Owain and Gareth are the same which is exactly what I need them to be. They approve of the funny boy which is a major bonus too!

And then there is the funny boy! There aren’t enough words to describe him. Maybe I should keep it simple and rename him my fiancee!

Yeah, so a little and a lot has happened in the past four weeks! Treatment is still waiting to start but I am no longer free agent! After a very romantic and personalised proposal (in true funny boy fashion) I said yes! Exactly four weeks to the day and time I was getting my diagnosis I was sat in a jewellers picking my engagement ring! I am beyond elated. Marathons have their ups and downs and today is definately a high! Looks like I have a training partner for life now. Lucky, lucky me!

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