Tuesday, 19 November 2013

More Charity Work!

I've been rather busy recently getting things sorted for going to Australia in January (less than two months to go now!) so I've sadly not been blogging as much as I should. I've also been trying to become more involved in charity work at the moment. So far I've done a speech for Macmillan to help kickstart their World's Biggest Coffee Morning and I also went up to North Yorkshire to speak at a WW2-themed event, on behalf of a charity called Butterfly Giving, which is run by a friend of mine. Both events were great and I'm not sure how much the Macmillian event raised but I know that the WW2 event raised over £2500!

I can think of no reason not to have a helicopter.
I'd also like to do some form of charity work in Australia, even if this is just giving speeches or speaking to health professionals about the advantages of having an oncology ward specifically for teenagers and young people. If anyone happens to work at a hospital in Australia and is interested (unlikely I know) please don't hesitate to email me, or tweet me, or send me a message via carrier pigeon.

Organising my trip to Australia has given me the travelling bug, but it has also given me a fantastic idea for something to do to raise money and awareness for charity. I'm considering travelling from the UK to  Hong Kong and then back again but without using planes at all. However this seems a bit boring so I need some suggestions for challenges I can do along the way, to make it into something actually worthwhile rather than just a jolly, so this is where I'm asking for your suggestions! I'm not 100% what I'm going to do yet or which route I'm going to take but I'd love to hear your suggestions and I'd be grateful for any help anyone could give me, as I'm hoping to do this next summer.

Saturday, 31 August 2013

Happy Third Cancerversary!

It's three years to the day that I was diagnosed with Ewing's Sarcoma! Hooray for being alive and to (at least) another three years! It's been an interesting journey to say the least and while there have been many low points there have also been many high points along the way.

Being ill has changed me as a person and it made me grow up a lot and realise I wouldn't get anywhere in life unless I worked hard and went out and did it for myself. I've also realised how vital family and friends are and I doubt I would be where I am today without them, so a massive thank you to any of you that still bother to read this!

While I have lost a number of friends, none of them are forgotten and there are so many people that I'm glad I've met, who I would never have known if I hadn't been ill. It's been a real eye opener to how hard doctors, nurses (and all those who work in the health service) work. I have many people to thank for the care they have given me, and while I still have three more years before I'm given the official all clear I know I'm in capable hands.

I've done a ton of stuff in the past three years, as having cancer has really inspired me to take every opportunity in life! (A bit like the Jim Carrey film 'Yes Man' but sadly lacking Zoey Deschanel). It's also led to me realising that I need to actually put effort into things, which has paid off, resulting in me getting straight As in my A-levels. Instead of going to university this year I've decided to take a year out and go travelling in January, starting with Australia for three months!  Until then I'm attempting to start my own business, as a business consultant for small local businesses in my area (warning- shameless plug ahead!) so if anyone runs a small local business and is in need of business advice on what to do next or how to expand their business please contact me via my website! http://www.nurtureconsulting.co.uk

My main aim has been to not let having cancer hold me back in life, so I think I've done alright with that so far, in the past three years I've-

- Gone back to sixth form after a year out and got straight As
- Met some of the best people who are now great friends
- Helped raise over £40000 for charity
- Done a speech at the Royal Albert Hall
- Had an interview at Oxford University
- Flown a helicopter on my own
- Visited Athens and Rome
- Driven two supercars at over 150mph (on a track....) (Onwards to 200mph now though!)
- Been to Leeds Festival twice, and Glastonbury (I will cry like a child if I don't get a ticket for next year though!)
- Had an interview and worked for a few weeks at a top professional services firm in London
- Made it three years since my initial diagnosis
- And last but not least set up my own business!

Here's to three more years!

Saturday, 18 May 2013

Lost Friends

The day after my initial diagnosis I went to Hull Royal, for further scans to see where my cancer had spread to. All I knew at this point was that I had a type of bone tumour. The orthopaedic surgeon at Hull told me and my parents that my cancer had spread to my lungs. It felt like I'd been given a death sentence. My Dad passed out and my Mum burst into tears.

I'm just going to warn anyone about to read the rest of this that it's going to be pretty morbid and heavy. I'm going to write about death. There's a general consensus not to really talk about death as a cancer patient, it's a bit of an elephant in the room at times, but it's my blog and I'll talk about what I damn well please!

 No one really likes talking about it (I imagine because you inevitably end up thinking about your own), yet it's one of the only true guarantees in life. Every single person alive has a certain number of days, hours, minutes and seconds left. I imagine a lot of people would act differently if they knew how much time they had left, if everyone had a little ticker over their head saying how long they had. A lot less time would be wasted on meaningless rubbish!

I probably spend more time than I should thinking about my own mortality. One of my first questions for my consultant in Leeds was what are the chances that I survive. He never gave me an answer to it, saying that it was too individual to give me a fair estimate, but I tried to find out online and all I could find was that metastatic Ewing's Sarcoma has a 10% five year survival rate. Not exactly the reassuring news I was looking for! 5% is better than nothing though! I'm nearly two years clear of treatment now, so only three more to go until I'm in the magical 10%.

Having cancer means you will inevitably meet other cancer patients and sadly some of these will die. I've met countless people along my journey but there are ten or so who I know who've passed away and are important enough to me to think about every day. It doesn't get any easier when someone dies, no matter how many times it happens. When a person is gone they leave a hole which can't be filled be anything and the saddest thing for me is that too many people wait until someone has passed away to tell them how much they meant to them. Of the friends I've lost it's only a few who I have properly had the chance to say goodbye and there are a lot of things I regret not saying when I had the chance. I'd rather tell people while I have the chance, and do things that I've wanted to do rather than wait until I get some bad scans and do it then. Death isn't something to be scared of, it's going to happen to us all eventually, just nobody knows when. Whenever I try and get travel insurance they'll ask me if I'm terminal. I say no but in all honesty I don't know. Terminal means you're going to die, and the implication is that it will happen soon, but no one can honestly know when they're going to die. It could be tomorrow or in a hundred years.

I received a letter in the post from the orthopaedic surgeon, who had told me my cancer had spread to my lungs, yesterday. She said she was glad I was in good health at the moment and that she'd heard I was going to read History at King's College London in September. I don't think she'd expected me to make it this far when she told me my cancer had spread.

Monday, 1 April 2013

My Caregiving Experience: A Journey of Love

Hello, today's post isn't going to be from me, or even about me! Today I'm handing over to a guest blogger from the US, called Cameron Von St.James, who's agreed to give his story of caring for his wife while she underwent treatment for a rare type of cancer called mesothelioma. I'll let him continue from here.

My Caregiving Experience: A Journey of Love

The worst day of my life was November 21, 2005. My wife Heather was diagnosed with a type of cancer called malignant pleural mesothelioma. Almost immediately, I had to adapt to a new role, and I quickly found out how difficult it really is to be a caregiver. Previously, I was ignorant of what this type of work required from a person. Three months before the terrifying diagnosis, Heather gave birth to Lily, our only child. These two events contrasted so dramatically, and the joy we had experienced at the birth of our only child was ripped away from us by this news. Instead of celebrating the approaching holidays as planned, we began down a long, difficult road to beat cancer.

During the initial diagnosis, Heather’s doctor informed us that we needed a mesothelioma specialist, and we only had two choices: Either we could go to one of two nearby hospitals, or a mesothelioma doctor in Boston. As I looked at Heather for any sign of interest in a possible treatment, I realized that she was shocked and terrified, and her eyes pleaded with me for help. Immediately, I knew where we needed to be.

I made arrangements for us to go to Boston. During this time, our financial situation began to deteriorate. Heather was unable to continue working full-time, and I had to scale back to part-time in order to care for her and Lily. I needed the extra time to arrange our traveling accommodations, to accompany Heather to her appointments and to care for Lily. After a while, these responsibilities began to take a toll on my resolve, and dark fears started to occupy most of my waking hours. On more than one occasion, I broke down in tears. I feared losing Heather more than anything else.

The support we needed came from a variety of places, and some of them were unexpected.  Family, friends and even total strangers leant helping hands, and I learned to accept their help over time.  If I had one piece of advice to give to any other caregivers out there, it would be to accept every offer of help, big or small.  It will be one less thing to worry about, and will remind you that you aren’t alone. 

After months of harsh surgery, chemotherapy and radiation treatments, Heather was able to beat the odds against her and survive mesothelioma. Its been over seven years since her mesothelioma diagnosis, and she remains cancer-free to this day. We received so much support during our fight, and now wish to return some of that to others going through a similar situation.  We hope that by sharing our story of success over cancer, we can help inspire all those cancer fighters and their caregivers who are still battling today, to never give up and never stop fighting for the ones they love.

Thursday, 14 February 2013

It's A Family Thing

I'd like to start with an apology. I've been horrendously busy the past few months with work and a bit of a health problem in the family. It's this health problem in the family which I'm going to be writing this post on. I've been kind of putting off writing about it for some reason but I might as well take the plunge. The health problem concerns my 79 year old Grandad who was diagnosed with both bowel cancer and lung cancer in October. He just had to go one better than my and get not one, but two cancer didn't he?

Having carefully explained to him what a blog was (Grandparents ey....) I asked his permission to write about him and he gladly gave it. It started off with unusual pains in his lower stomach and after visiting the doctor and going for a scan it showed he had a tumour in his bowel. Following this they decided to scan his lungs, which showed another tumour. They decided to biopsy the tumour in his lungs and it showed that he also had a type of slow growing lung cancer. Having been diagnosed he was already competing with me in a game of cancer-one-upmanship! Further tests showed that the cancer in his lungs had spread to his lymph nodes.

With both cancers being diagnosed, it was decided that the best course of action would be to treat the bowel cancer with a course of radiotherapy. The idea of this would be to reduce the side effects of the bowel cancer and bring it under control. He wasn't given a high dose of radiotherapy, but because of being somewhat older (I say this but he still acts young!)  it had a worse side effects. I went to see him last weekend and he's a bit better but he's lost over a stone in weight and has only just begun eating again. I was able to give him a few hints and tips about what to try so I hope I was some use!

I've just heard that he's started putting on a bit more weight which means that he will be starting chemotherapy in the next few weeks! Given him a few tips on what to do when the chemo kicks in and everything he eats tastes like cardboard!

As for my health I'm currently doing okay, I'm still very very thin on top (small problem but an annoying one) but I can think of worse problems if I'm honest. I have to go to Leeds again in a few weeks, to the fertility hospital to see if I'm still firing blanks. According to my Dad I'm going to have to put in a stand up performance....With comments like that I'm going to leave my parents at home when I go this time. Fingers crossed!

Sunday, 11 November 2012

So does that mean you're okay now?

"So does that mean you're okay now?" I get asked this question a lot, and for anyone who isn't a doctor or who's had cancer themselves it can be really confusing, when a person has finished treatment for cancer, yet they're not 'cured'.

Cured isn't really the right word, because even though all the treatment is finished and the cancer is hopefully dead, there's still a chance that the cancer might still be alive somewhere, and if one cell gets past then the cancer will come back again. Annoying as this is there is nothing that can be done about it except for scanning every few months! Luckily I've found a handy cartoon which explains this a lot better than me!

Saturday, 11 August 2012

A Sad Few Weeks and a Seven Thousand Mile Journey

The last few weeks have been a sad few weeks for me, with the loss of two close friends, Rory and David. Just so people know this is going to be a sad one but please keep reading.

Rory was 15 when he was diagnosed with leukaemia in late 2009. Of all the people I've met through cancer I think Rory was the one who had the worst side effects of treatment. He was also one of the bravest. His chemotherapy failed at first and he had to undergo a bone marrow transplant. For this he was in hospital for 6 months straight and was kept in isolation. Rory was always looked after by his Dad, Darren, and they were both exceptional. Whatever came their way they took it in their stride. Rory had been on the ward long before I had so he was always there to provide advice and to encourage me to get out of bed and do stuff rather than sit around feeling sorry for myself! He always made me feel better about my situation, when he was in a worse one. The radiation therapy had damaged his hips, meaning he needed to have a double hip replacement but until this he was confined to a wheelchair. By May 2011, Rory was out of hospital and attempting to get back to a normal life, or as near to normal as was possible. He was still very ill, having to come in for weeks at a time with infections. By this time I had finished on the ward but I came to see him every time I was in Leeds. I saw how ill he still was and by all accounts it really upset me, but every time he wouldn't let me feel sorry for him. He still fought on as best he could in his day to day battle. He was absolutely mad about football too, every time I came in he'd be watching it on the big TV! He was a Huddersfield lad so naturally he supported Huddersfield Town and followed them religiously!
Rory in early 2011.

It was in November 2011 that he was readmitted to the ward for shingles. He had a very bad case because of his weakened immune system and it'd caused him to lose his eyesight. Now not only was he in a wheelchair, he was blind. This sadly meant he was unable to watch his beloved football. Christmas 2011 was his third Christmas spent in hospital. Every time I was in for scans Rory was always prove to be a source of inspiration for me. A lot of times when I've feared doing something Rory has been a source of strength for me. He's pushed me onwards and upwards and always made me strive for the best. I remember talking to him one time and he telling me to remember that I'd had a rough time! This was while I was helping him from his wheelchair to a reclining chair! I think this shows just how selfless he was! He was a true gentleman by all standards, always putting others before himself. He never wanted to cause anyone any hassle.

On the 2nd of July 2012, Rory and his Dad finally got out of hospital and managed to go home. Due to Rory being blind they'd had to move to a new flat, specially adapted. Sadly on the 15th of July, Rory passed away in his sleep. In the words of his Dad, he didn't only lose his son, he lost his best friend.
Rory and his Dad, at Huddersfield Town Stadium for his 18th.
Of all the things Rory did in his life, he's made me see many things differently. He's made me realise life is for living. That life isn't for sitting around moaning, it's for going out and doing. For enjoying what you have rather than complaining about what you don't. Nothing lasts forever so make the most of what you have. Make the most of your friends and family, don't wait until it's too late to tell someone that you love and value them.

My other friend who sadly passed away was David Boulton. David had the same type of cancer as me, in the same place and with similar spread. When I first met him we were introduced by a nurse on the new TCT ward at Castle Hill. The nurses thought I'd be a useful person for him to speak to because I'd been through all the treatment. I remember being surprised at how bloody big he was! David loved rugby and played for Lambwath Lions. He was a big guy with a big heart. The turnout at his funeral proved this! Sadly David didn't respond to treatment and the cancer continued to spread. I last saw him at Castle Hill on the 15th of July. He sadly died on the 18th of July. He was always brave and always looked on the bright side of everything. I remember when I first went to speak to him he asked if we could go on the nintendo wii to make it a bit less formal! He was always a laugh and a great guy. He'll be truly missed by his family and friends. 

The last time I saw him I was considering doing a skydive for charity. I've now decided that when I eventually do the skydive it will be in memory of Rory and David. 

I'd also like to use this blog post to draw some attention to someone from my village who is doing a bike ride to India in aid of Teenage Cancer Trust. Peter Smallwood is 23 and he was previously working in Leeds at Science Warehouse, until he decided to take on the challenge of cycling to India. He's expecting to be in Istanbul by early September and to have reached India by early January. As you all know any money donated will go towards helping young people such as Rory and David. This money is so vital. 

I'm sorry that this post has been so sad and hopefully the next one will be more positive. I do think that everyone can learn a lot when people pass away. Instead of just mourning the fact they've left us, I like to try and think what they gave to me, be it knowledge or inspiration or just happy memories. I'll never forget the laughs I had and the memories I hold. I'll miss them both so much.