Standing Up To Cancer

Friday evening saw the annual Stand Up to Cancer telethon air on Channel 4. The night is a televised fundraising campaign between Cancer Research UK and Channel 4, that aims to bring people together to speed up progress in life-saving cancer research. Stand Up To Cancer donations help to fund research, which takes developments in the labs and accelerates them into brand new tests and treatments for cancer patients.

The charity telethon concluded late Friday night with the public in the UK having raised an incredible £24 million for cancer research and support, this is a huge £8.6 million increase on the £16 million raised two years ago. What incredible figures! It’s certainly shows the power of television and social media in raising awareness. Some of the patient stories were very emotional and hard hitting, it’s often to strange to think I am one of them, with my place in the stage 4 cancer club fully cemented.

The evening also saw TV appearances from You, Me and the Big C podcast hosts Debs (aka Bowelbabe) and Lauren (aka Girl vs Cancer). It’s great that they are continuing to break down barriers around cancer and the way it’s spoken about. I’d highly recommend the podcast they created with Rachel (aka Big C. Little Me.) for anyone who is unfortunate enough to be going through something similar.

I am debating taking on another hiking challenge next year, and watching parts of the Stand Up to Cancer programme has made me more determined to continue to raise funds and awareness despite my current injury. I have tendinitis in my right heel (most likely triggered from previous challenges including my most recent half marathon). The next trek isn’t until April 2019 so hopefully I’ve got plenty of time to get treatment on my ankle and get fit in preparation to take on the Jurassic Coast trek with Trekstock. Now I know what to expect from the last challenge I’ll need to take on some serious training this time around, perhaps some personal training and HIIT classes as well as waking. Anyone want to join me?

Although I participated in regular walks last time I don’t think anything could have prepared me for the reality of how mental and physically tough the whole weekend climbing the Lake District 5 Peaks was. I was a complete wreck! Still, time is a healer and I am ready for something new. I am determined to keep on standing up to cancer and carrying on as best I can.

The Perks Of Pembrolizumab

Last week it was reported that two scientists behind groundbreaking Immunotherapy developments had won the annual Nobel Prize for Physiology or Medicine for their work on Immunotherapy.

This is big (and incredible) news within the cancer world! It got me thinking about all the positives which come alongside taking a newer, cleaner drug like Pembrolizumab. I’m continuing on treatment indefinitely which is hard to get my head around, but It’s safe to say I wouldn’t be alive without it! I just have to suck it up and keep on going.

Professor James Allison and Professor Tasuku Honjo discovered how to fight cancer using the body’s own immunise system, which eventually led to treatments for advance melanoma and has transformed the way it’s treated. My current Immunotherapy drug Pembrolizumab is now also being used to treat other cancers such as advanced lung cancer and Hodgkins Lymphoma. The drugs now offers hope to patients like me with previously untreatable cancer! Believe it or not the duos work began in the 1990s and is now starting to pay dividends!

You can read more about the award and the developments in the news section of the Cancer Research UK website, which also includes a few quotes from yours truly! Thanks CRUK!

I’m so happy that research in the area has been funded so far, but my case is one of many, some not as successful! Hopefully research will continue so scientists can fully understand why drugs work for some people and not others and how it can developed to become even more successful.

Ipilimumab (aka Yervoy), which I took a few years ago was one of the first drugs developed using the scientists discovery, with Pembrolizumab and Nivolumab following closely behind.

I started thinking about all the perks of taking this drug compared to some of my previous treatments. Going through endless cycles treatment is like crossing a battlefield every day. I need to keep thinking about the positive aspects to help keep a positive mindset, and it might help someone else too!

My hair and eyebrows have grown back since my treatment change, for me this is a huge success! I ask look well (partly thanks to the hair and eyebrows!) therefore not like your typical cancer patient; this does wonders for my mental health, but I know often people don’t always appreciate how unwell I am if they can’t see the evidence for themselves.

The side effects for me have been a lot less than on previous systemic treatments, including Vemurafenib which caused me many more problems such as frequent vomiting, skin rashes, bad stomach, headaches and joint pains to name a few. I will sometimes still experience these side effects, but to a much lesser degree than previously. My current main side effects are fatigue and vitiligo, and although these get me down frequently, (see my previous post Tired of Being Tired) I know I’ve come really far over the past two and a half years.

The infusion of the chemo itself is only 30 minutes, I know some people end up hooked up to machines for the best part of a working day receiving other types of chemotherapy. On a really really good day I might only be physically hooked up to a drip stand for a hour or so. Sure, that hour feels like an eternity, and there’s an awful lot of waiting around in between appointments etc, but it could be much worse. Today I had a really long day at the hospital, but I have to remind myself it’s all for the greater good!

Some weeks, when not seeing my consultant or one of my oncology team I only have to visit my hospital for the treatment in the afternoon, making the whole experience far less pain staking!

I’ve spent much less time as an inpatient on a hospital ward that with previous treatments. Three years ago it felt like I was constantly visiting my local A&E due to various side effects and having numerous blood transfusions, but so far so good with Pembrolizumab.

I hope that in the future this drug will be developed into a tablet, meaning a lot less visits to hospital for patients like me, considering how advanced chemotherapy treatments are becoming I would it’s not too much of a distant dream. Until then I just have to grit my teeth and keep going.

World Cancer Day

Today is World Cancer Day. World Cancer Day takes place every year on 4th February and aims to save millions of preventable deaths each year by raising awareness and education about cancer, and pressing organisations across the world to take action against the disease. According to the Cancer Research UK website, Cancer is the biggest killer worldwide. however research has helped double survival rates in the last 40 years. The day is an ideal opportunity to spread the word and raise the profile of cancer in people’s minds and in the media.

Some game changing cancer treatments, such as Pembrolizumab, the Immunotherapy drug I am currently receiving have only been available in more recent years. My situation would have been very different if I had been diagnosed earlier in life. It’s incredible to think how much the treatment process for melanoma has changed over the last decade. Although huge progress has been made, treatments are painful, debilitating, and for others like me they are long-term.

Sharing my own story doesn’t always come easy to me, as I can be a fairly private person, but I know that is for the benefit of others as well as myself. In some ways blogging about my journey is part of my grief process for the life I once had; expressing myself through my writing is something I previously didn’t think was possible. I really want to make sure something good comes out of this horrific situation.

For me, the metaphorical and physical scars will never been healed; its is as though I am a puzzle which now has a few missing pieces that will never be fully complete again. When I was initially diagnosis with melanoma at 18 I felt my life was over before it had started, but its thanks to pioneering research that I am still here at 30. I know I am one of the lucky ones. Perhaps I don’t fulfil the typical demographic when it comes to my cancer journey, but what is actually considered normal? As they say, so far so good. I have my good and bad days, but I thank my lucky stars every day that I am still alive.

I passionately believe we need to continue research to help find a cure for this awful disease and am beyond grateful to those who dedicate their lives to finding it. I have huge respect for those who continue to raise funds and awareness of all forms of cancer. both individuals and charities such as Cancer Research UK, Macmillan Cancer Support and Trekstock. One day I know a positive result will come from all the hard work.

Why Everybody Needs To Wear Sun Cream

The recent change in the weather and the feeling of summer in the air has made me think more about the importance of wearing sun cream. Its important to highlight just how dangerous sun exposure or the desire for a tan could be. Although over-exposure to the sun is not how I got Melanoma, it would be silly for me not to start talking about it, as its something I think about frequently. In some cases situations such as mine could be avoided or prevented altogether, and I don’t want any one else to go through an ordeal such as the one I’ve been going through for the past 11 years.

I’ve spent many sleepless nights wondering if there was anything I could have done to stop this from happening to me, I think the ‘what if’ question will always be there at the back of my mind, along with a pang of guilt for the situation I now find myself in. I’ve never been a sun worshipper, and always cover up as much as possible, but the worry will always be present. I’ve been told my Melanoma would have developed regardless of the climate I live in. Still, regardless It’s easy to know the right thing to do after something has happened, but it’s always hard to predict the future.

As the summer weather reaches it peak I have a feeling I will see more news articles and images of sun burnt brits on social media often accompanied by laughing emojis or captions such as “LOL”. It’s difficult to comprehend why people don’t take this seriously, its no laughing matter. According to the Macmillan website, each year about 14,500 people in the UK are diagnosed with Melanoma, and it is one of the most common cancers in young people aged 15 to 34.

Often skin damage doesn’t show up straight away, perhaps a few weeks, months or even years later, with increased fine lines and wrinkles, and even skin discolouration. It is a vital part of a skin care routine which often gets forgotten about. Wearing sunscreen on a daily basis is the best thing to do to keep skin looking youthful and healthy. I know many people who wouldn’t go out of the house without make-up but chose not to protect their skin against UV radiation. If I am being truly honest it baffles and upsets me that people don’t take this seriously despite knowing about my Stage 4 diagnosis. It’s not healthy or good for a persons to expose themselves to such extreme conditions which our bodies are not built for. Our skin is the largest and fastest-growing organ and needs protecting just the same as the other organs in our body. Cancer does not discriminate, not matter who you are. Bob Marley passed away from Melanoma in 1981 after it began under the nail of one of his toes. It just goes to show we are all at risk no matter what climate we live in or ethnic background we come from.

I so grateful that my Mum made me get my suspicious mole on my neck looked at when I was younger. Once she spoke to me about it I developed a bad feeling about it almost instantly. I remember clearly raising these concerns with my Dad when staying at his house one weekend. I’m fortunate that the GP referred me so quickly, It just goes to show that If you have an overwhelming feeling that something isn’t quite right, you should trust their instincts and pay a visit to the GP. As the saying goes, if at first you don’t succeed, try, try again. I for one know my own body and what feels right or wrong. Often others seem hesitate to book a GP appointment because they consider their aliment to be something minor, or not worthy of the time of a professional, and we all know how stretched the NHS is. I’ve learnt that nothing is minor when it comes to your health and wellbeing, it is what the service is there for in the first place after all. When I was diagnosed with a brain tumour I had a few friends tell me that it prompted them show suspicious moles to their Doctors.  I know people who have since had moles removed as a result of a routine visit to the GP. Action such as this are great, and I am pleased people have been so proactive, but it shouldn’t take such an life altering event for this to have an effect on people. If in doubt, get it checked out!

I am fighting to stay alive due to an illness that is beyond my control, but there is a chance for others that it could be prevented. The side effects such as nausea, fatigue, diarrhoea, hair loss, rashes, joint pain, itching, headaches and reduced appetite are bad enough let alone the stress and physical and mental trauma of actually going for treatment at hospital every three weeks.

Naturally people should continue to enjoy the sunshine over the next few months if they wish, but I would ask anyone reading this think twice before heading outside without sun protection. I hope most of the tans I will see are from a spray can or bottle.

What Lies Beneath

More and more often I’ve been finding that people don’t seem to realise or appreciate how unwell I am. I’m lucky that I currently look well on the outside and don’t have any visible signs of a disability, therefore people often dismiss it, or wrongly assume that there will be an endpoint to my treatment.

Very few people see me at my worst; hooked up to iv drugs in the chemotherapy suite, or lying in bed all day with no energy to move or get dressed. It’s not exactly a case of what you see is what you get, there is so much more going on. I guess it’s hard for outsiders to comprehend what lies beneath the surface. It doesn’t help that I constantly play things down for my own sanity, I act the part of someone who is 100% healthy because it makes me feel better. My A Level Drama classes have finally come in handy.

I’ve recently learnt that the blue Transport for London ‘Please Offer Me A Seat’ badges are to be rolled out on a permanent basis. I took part in the initial trial of the badges with TFL towards the end of last year.  I found it to be helpful, however I think the general public need to be made more aware of the scheme in order to make it a success. Before the badge was introduced one of my friends actually wrote to TFL about the lack of awareness for disabled people on public transport, so it’s good to know the public are being listened to. I hope this will make a real difference to people with invisible health conditions, myself included. My original blog post about the trial can be found here.

I have various signs of illness, however once I cover my head with a wig and cover up my portacath and scars, I look just the same I anyone else. Perhaps in some ways it’s the ultimate disguise. For the most part, this is a good thing; I can pretty much go about my daily life without it being obvious I have cancer. Having ways of disguising my condition does wonders for my confidence. I know I can’t win and I want people to understand my situation, but I also don’t want to be treated any differently. I don’t want people in the street to see I’m unwell, but I also want a greater awareness and understanding too. I’m just going around in circles really!

Since making my blog public I have found it liberating and also very helpful, it allows me to speak freely and honestly about living with Stage 4 cancer. Others have commented that it has helped to give them a better understanding of what I am going through on a daily basis, but most of all it means I am not feeling so overwhelmed by it all!

With immunotherapy treatment there aren’t too many side effects, certainly less than I’ve had with other treatments (yay for eyebrows and hair beginning to grow back). Pembrolizumab doesn’t work in the same way as traditional chemotherapy.

When I was first diagnosed with Stage 4 cancer I was told the average life expectancy was 18 months. Six years on I’m still here and I’m sure that sometimes people must think I made it seem worse than it was, however due to advances in treatment and timing being on my side, I seem to be one step ahead of cancer for now.

People cannot see how unwell I am, however we cannot see the air that we breathe, but it doesn’t mean it’s not there. Yes, I’m still really really unwell, if not more now than I have been over the last few years. No, treatment will never finish, and no I will never be cancer free. That’s just the way life is.

But for now, between my ultimate disguise, my TFL badge and my blog posts, I can try to achieve a sort of strange balance of being treated normally but with consideration for my condition, whilst also raising awareness of Melanoma.

Running And Raising Funds

A few days ago I signed my Dad, siblings and I up to the Cancer Research London Winter Run.The 10k race takes place around London (hence the title) on Sunday 5 February 2017. I feel like I need a goal to get me motivated again, and its also a great way to raise money for an amazing cause at the same time. Ideally it would be amazing if it gave me the pus to start exercising properly again.

I hadn’t heard of this 10k before, but wanted to find something in early 2017. As much as a tough mudder might sound a little tempted, I know I am kidding myself if i think I’d be able to complete the challenge. I’d admire anyone who has done one before, but the possibility of getting an electric shock during one of the race elements really puts me off. The Winter 10k looks like it could be a lot of fun, who doesn’t like a bit of fake snow and polar bears. Last year the route began at Trafalgar Square, and then past landmarks such as Somerset House, Guildhall Yard and St Paul’s Cathedral so if anything it’ll be a nice sight seeing tour.

I’m looking forward to participating as a family, between us we’ve done various half marathons and head shaves but nothing all together. I also have a group of friends from work who are joining out team, which is amazing! Teamwork makes the dream work after all! Overwhelmed by the support so far.

I haven’t tried to run since I ran a half marathon in October 2015, a lot has changed since then health wise, but I think I could manage a 10k. I don’t think i’ll be able to run the whole way, but I don’t mind as long as I finish. I’ve never trained for anything over Winter but according to the Winter Run website running in at this time of year is actually easier on the body! More information on the reasons why can be found here.

I’ve set up a family Just Giving site. Our plan as it stands is to raise £800. Currently we are half way there! It might not seem like much in terms of treatment costs, but every little helps! I should put my apron on and get ready for a bake sale or two in the new year.