Loving The Skin We Are In

As I come to the end of relaxing few days away in Cyprus it’s dawned on me just how many people are dying for a tan, and will go to any lengths to get that sun kissed look all the holiday adverts suggest we should have. What happened to loving the skin we’re in and looking after it?

Last summer I wrote a post called Why Everybody Needs To Wear Suncream and for me these words will always ring true.

Wearing sunscreen on a daily basis is the best thing to do to keep skin looking youthful and healthy, but people do the exact opposite to get a tan, exposing it to the strong sunshine or tanning bed lights for hours on end. I know people who wouldn’t go out of the house without make-up and wouldn’t let their own children go out without sun cream on, however chose not to protect their own skin against UV radiation.

Sometimes It can upset me that people don’t take this seriously despite knowing about my Stage 4 diagnosis, particularly those who are close to me and have followed my journey. Strangers on sun loungers in Paphos can almost be forgiven, but part of me wishes I had a sign around my neck explaining why they should cover up. Something like, ‘Stage 4 skin cancer, spread to brain, lungs and bowel, dying to live, don’t die for a tan’. Might be a bit much though?

Our skin needs protecting just the same as the other organs in our body. We are all at risk no matter what climate we live in, but it’s certainly heightened when we holiday in sunnier climates. Just because someone has been wearing factor 20 or 30 all week doesn’t mean there skin is ‘used to’ the sun and they can then go without. By trying to tan quickly using a low factor SPF, people increase the risk of damaging skin long term.

My personal belief is that everyone should be wearing high factor protection. I didn’t get melanoma from direct sun exposure, and the desire for a tan, but for me wearing anything less than factor 50 would be stupid.

Over the course of the week I’ve seen so many people with bright red faces and bodies basking in the glory on the early October Mediterranean heat. Cyprus has been described as a year round destination, so I can see why people come here to get there summer sun fix, particularly before winter sets in. It’s painfully obviously that red skin is not a good look and doesn’t turn into a tan afterwards, it peels and flakes off and not to mention it’s painful too. I’m currently sitting on a sun lounger in the shade and can spot at least 5 people in my immediate vicinity with severe sunburn.

As someone who is fighting to stay alive I don’t understand why people see sun exposure and even getting a tan as so important. I’d rather been a pale Patsy than a red Ruth any day. But maybe it’s because I know how unpretty, heartbreaking and soul destroying a life with a serious cancer diagnosis really is.

A few years ago prior to my stage 4 diagnosis I watched a BBC documentary about people’s love of tanning with one of the signers from Girls Aloud called Nicola Roberts: The Truth About Tanning.

In the documentary, Nicola, a pale red head explore the culture of tanning amongst young women and men in the UK, and the extremes they will go to in order to obtain the perfect tan. She meets women whose love of tanning has become an addiction, using sun beds 5-6 times a week and someone who inject untested tanning-aid drugs bought online in the quest for the ultimate tanned body.

Even though I hadn’t had my stage 4 diagnosis at this point I remember crying to my mum whilst it was on television as It was far too close to home for me; one of the segments featured a mother who had a daughter who died from melanoma which had started as a result of frequent sun bed use. I cried as I told my mum that it could have been me that died from melanoma. Little did I know that my life would change forever as a result of the same disease shortly after.

Fake it, don’t bake it! Love the skin you’re in as the Oil of Olay (or Ulay) advert once suggested. You never know, protecting it might just save your life.

Wishing I Was Anonymous

As I come to the end of my two week holiday I’m looking forward to getting back into a routine. As much as I love being away and exploring new places there comes a point where my fatigue kicks and I am ready to rest in my own space and sleep in my own bed.

One of the best things about being on holiday is being anonymous. I travelled alone for seven days after my friends wedding; a whole week where nobody I encountered knew anything about my personal life, to them I was just an ‘ordinary’ person travelling alone, but for me the trip meant more than that. I didn’t have to feel the need to explain myself wherever I went, which was a welcome break for me. I’ve spent the last year worrying that my illness would mean that somehow I wouldn’t make it on to the flight. When I first booked the trip I kept thinking that if I die in the next year, would my family be able to get the money back I’d paid so far?. Morbid but true!

This holiday helped my realise I need to try and stop letting cancer define me. Like it or not it happens to me every day. I can be who I want, sometimes it isn’t always possible, but there are occasions when I can be completely anonymous and free from the poison chalice that is my terminal diagnosis. Even if it’s for a few hours it feels so nice to feel I fit in to the crowd. Looking well is a huge bonus in this situation as there are no questions asked. I enjoyed being a typical tourist exploring a new city.

For the first few days of my solo trip cancer was very far from my mind, however a few days in I received an email confirming my next PET CT Scan at the end of the month, so I am back in purgatory for the next few weeks whilst I play the quarterly ‘will or won’t my cancer be stable’ waiting game. You’d think after almost 8 years since my stage 4 diagnosis and approximately 4 years of active treatment I’d be used to this, but I’m not!

During my trip I noticed some spots of vitiligo getting worse, which I think could be down to overall sun exposure whilst away. Although I wear sun cream constantly I spotted a new area appear on my neck which made me feel really low. This change in skin pigmentation is a side effect of my treatment. Most of my vitiligo is in my torso and legs so not easily spotted by others, but the new area, along with the huge scar on my neck from my original melanoma is much more obvious. I also had a couple of nose bleeds, but I think this is likely to be down to the huge head cold and sore throat I got whilst in Chiang Mai.

When I look in the mirror I see I scars or marks of cancer treatment at every angle, the mark on my neck is another to add to my collection. I have scars on every part of my body from different operations, some more obvious than others; I have a protruding portacath for my immunotherapy treatment, vitiligo, raised scars, tattooed eyebrows and a slightly lazy eye. I had the last eye as a child but it got progressively worse again a couple of years ago so I had it operated on for the third time. The surgeon told me he thought it was very divergent considering I’d already had surgery twice, and the shift could be down to optical nerve damage that may been cause by my brain tumour a few years before. Although this is not necessary why, I can’t help but feel my tumour had something to do with it, because nothing is ever simple in my world. My left eye still remains slightly lazy, another reminder of all the crap I’ve had to go through. I so wish these things didn’t have an impact and I didn’t care, but I really do.

I should look in the mirror and be proud of my body, I know this because it has been so strong and fought back at every opportunity, but there are days when its difficult. The last few days have been hard, with no one there to help distract my thoughts about plans for the day or if the breakfast in the hotel will be good.

I really try not to let cancer define me, not to let it win, and It’s certainly not going to destroy me. When I feel low and depressed its not necessarily one particular thing that I can put my finger on, but a combination of the whole living with cancer package that throws me into turmoil. It’ll be something seemingly small, such as spotting the vitiligo earlier which will push me over the edge and then makes me feel down again.

All the scars and marks remind me there is a extremely unwell person staring back at me. That person is asking for the magic cure to fix everything. I have to dig deep for the mental strength to and carry on, only wishing I had the answer my reflection is looking for.

Being positive and picking myself up each day isn’t always simple, I try to see the good in situations and hope one day I’ll have the answers. I want to feel happy but it isn’t always the case. It goes without saying I’ve had an amazing couple of holidays over the last few weeks, I had a chemotherapy break, so when I go next week it’ll be the first time in six weeks, which is a rarity. America and Asia have been so much fun, but my reality is still the same as it was a few weeks ago, and it’s always hard come back from a good place mentally knowing it’s going to be a bumpy ride.

Can I go back to being anonymous please?

Becoming An Adventurer

I am about half way through my holiday right now, so far I’ve visited Phuket and Chiang Mai in Thailand. I’ve created some wonderful memories, taking me well and truly out of my comfort zone, perhaps I am more of an adventurer than I thought!

The main reason for booking the holiday was to be a bridesmaid for my school friend in Phuket. In total there was a group of about 50 people who had travelled from England to watch the beautiful couple say ‘ I do’. It was so much fun spending time with friends and their families, as it wouldn’t happen ordinarily. Cancer has been very far from my mind, especially sipping coconut water from a real coconut at a beach bar overlooking the ocean! The venue and wedding itself were beautiful, it was an idillic setting, despite the delayed start due to a storm. I can’t wait to see all the photos.

Whilst in Phuket my friend and I took a day trip to Phi Phi, it was stunning however the weather was awful, making the boat journey very scary, however we made it there and back in one piece and lived to tell the tale. Whilst there we took a long boat out from the shore went snorkelling. Not one of my usual weekend activities and very much in my red zone of being scary and unsafe (not the fish, but the boat itself).

I’ve also eaten numerous times on my own, apart from day time cafe jaunts to write blog posts I would never have dreamt of going out to a restaurant for dinner alone whilst in London. ‘Table for one’ just doesn’t seem like the done thing, but when on holiday anything goes!

After my Phuket adventures I flew North and explored Chiang Mai for four days, I’ve found it to be a relaxed and friendly city, and I’ve been able to continue my down time. A few months ago I booked a trip to an Elephant Jungle Sanctuary which feels like a must when in Chiang Mai. As many people know I am not a really an animal person, so getting up close was an interesting experience. You can see form my Instagram photos that I’m pretending I’m not petrified!

Despite having a huge cold (mainly thanks to air conditioning) I’ve enjoyed the time alone; being able to wonder around and not worry about anyone else is a bonus. I’ve slowly been loosing my voice, I’m sure it’s down to a mixture of the cold and not speaking to people very often, I’m just glad it’s nothing more serious.

On paper this trip was one of the most scary things I’ve ever done, I thought spending so much time alone would be boring and was worried thoughts of cancer, dying abroad and my upcoming scan towards the end of the month would take over, not having anyone there to distract me. Two destinations down, and two to go! Perhaps I am becoming more adventurous? So far it’s been a success, I’ve been too busy exploring to think about cancer. All the negativity surrounding my illness is very far from my mind, I just hope it lasts when I get back home.

Flying Solo

Next month I am flying solo in more ways than one. I’m heading off to Asia for a wedding, and then doing a little bit of travelling alone. Being a stage 4 patient the thought of being in another country travelling solo is petrifying, especially when it’s to countries I’ve not been to before. I keep waking up in the night panicking that I’m going to die on my travels with none of my family around me, this probably seems ludicrous to others, but it’s something that has been playing on my mind. No matter how much I try this always niggles at me when I’m far away. Realistically, I don’t want to travel alone but I am sure it’ll be an amazing experience, I didn’t go travelling during my last minute gap year so It seemed like too good an opportunity to pass up. I had a bit of a YOLO (you only live once) and FOMO (fear of missing out) moment when booking the trip around a year ago. I just kept hoping I would be around and well enough to see it through, and thankfully I am.

I begin my trip at a wedding with around 40 other guests, including spending the first part of the trip with some very close friends, so I won’t be short of people to chat to and share experiences with there. It’s been a long time coming and I literally cannot wait to spend quality time with friends! I also end my two week trip in good company, which is very lucky. I’m spending about 7 days on my own in total, and although I’ve travelled to places by myself to meet friends before, I’ve never spend that much time exploring alone. I am a little apprehensive about it, but there is no backing out now. A few years ago I spent three days in Barcelona on my own, I loved the city but I missed sharing the experience with another person.

I’ve chosen to travel alone because I may not have much time left; I love going on holiday and always want people accompany me, but I want to seize the day and create some good memories of life outside of the terminal illness vortex, companion or no companion. I am yet to figure out exactly what I am going to do yet, but I do love a plan! I have my bridesmaids dress, factor 50 sun cream, malaria tablets and new camera at the ready, and I intend on spending this weekend looking at guide books and scouring the World Wide Web to find out more about my go place and activities for each destination.

I am sure its going to be an amazing once in a life time trip, and I’d rather travel alone than not go at all. It would’ve been nice to have someone to share the experience with, but I didn’t want to miss out just because I’m single. I’ve been told by many experienced travellers I’m bound to meet people along the way, but if I don’t that’s ok by me. I just hope I don’t end up talking to myself too much!

Being single is a lonely, especially at 31, but so is living with incurable cancer and the two do not make for a great combination. As mention in my blog post Singles Awareness Day back in February, I feel due to my cancer diagnosis I cannot offer a future to someone else. I honestly can’t imagine having a permanent holiday companion and a plus one for life.

As we get older the stakes are higher, I’m sure there are loads of men out there with baggage, but the reality is my diagnosis creates a huge barrier. As we get older it becomes increasingly frustrating; the pool of soul mates keeps getting smaller and smaller, but my illness prevents me from letting my guard down. Maybe I have focussed too much on working and keeping sane that way? but nowadays it feels like there is a time pressure on finding someone and settling down. With life being so uncertain and fragile it feels like I have nothing to offer in that way. Who wants a life with terminal cancer patient on active treatment and on medication for depression anyway? Like it or not there is a huge stigma about being a single female in your thirties, all of a sudden it feels alienating, and with cancer on top this is a total nightmare!

At my age people start thinking more in the long term, I’m in the minority with most of my friends who are settled down. Personally, I cannot think in the long term; I feel like it doesn’t exist in my world, so how I am meant to move forward?. Having cancer has taken so much from me, not just having a wedding / holiday companion but the overall prospect of a relationship and starting a family. Cancer won’t ever let go of my life, there is no remission or stopping treatment in sight and I have to accept that I may never meet a man and settle down. The short answer is I can’t. I am not at the same stage as my peers, although part of me is relieved that a boyfriend isn’t going to be dragged through this living nightmare, the future does feel lonely. It isn’t so much that dating is on my mind, but singleness definitely is.

I’ve heard of people in unhappy relationships who have experienced a light bulb moment post diagnosis and left their partner, having a new found appreciation for life. I feel I didn’t even get the chance to really begin the search for ‘the one’. For me, the sky isn’t more blue, the grass doesn’t looked greener and I’m probably not appreciating the small things in life as much as other people, quite frankly I don’t like the feeling of sand between my toes – it’s too hot and it gets everywhere!

Having said that, of all the bad things cancer has given me I’ve certainly been shown a lot of love and compassion over the years. I am fortunate that there are some wonderful people in the world experiencing this awful journey with me, even if they aren’t my wedding plus one.

Independence Day

I write my latest blog post for America on July 4th, celebrating Independence Day with one of my oldest and closest friends. Unsurprisingly I’ve felt really happy and content during our trip so far, as I’m removed from the realities of my daily life. It’s exactly two years since I started taking Pembrolizumb after my second bowel surgery to remove a tumour from my small bowel.

Thanks to Pembrolizumab I’m celebrating another kind of Independence Day; one that is free from cancer and all the worries that come alongside it. I’m in full on vacation mode right now and it feels lovely to have a long break from work and get some headspace.

Ten years ago at the age of 21 I studied in America as part of my university degree and I made some incredible friends from all over the world along the way. I was lucky enough to be a bridesmaid for one of my closest friends in Maryland over the weekend. America and the people I met remain very special to me, and I feel very fortunate I’ve been able to return to the states over the last decade, even though there have been times when I felt it would never be possible again.

Looking back, I wish I’d gone travelling on my gap year, however nowadays I feel even more grateful that I was able to experience living in another country as a young 20 something.

Health insurance can mean the America ends up being one of the no-go places for cancer patients, particularly those who haven’t been given the all clear or are classed as in remission, however I managed to get a reasonable insurance cover policy through a company called Insurance With. They recognise Immunotherapy treatments alongside chemotherapy which has made the insurance process much easier.

I’ve been caught up with everything at home over the last few months; a new job, moving house, a charity trek and the never ending cycle of hospital appointments. So much so that I hadn’t realised I need to take some time out. Walking through a stunning National Park yesterday made me feel like I hadn’t a care in the world, I’ve been so relaxed in the beautiful setting in Maine I’d even forgotten what day it was. I’ve been spending time with my oldest friend who I only see around once a year, so it’s even more special. If you follow my social media you’ll see my various holiday photos.

Often I feel as though I’m living in the shadows of the life I had before, but not today. Despite tiredness and aches and pains from hiking up a beautiful mountain yesterday I’m ready for a new day. It seems crazy to think just over a week ago I was having Chemotherapy back home, my 34th cycle of Pembrolizumab. What a difference a few days can make! I have vivid memories of having this drug for the first time; I remember the smell of medicine and cleaning products on the ward and the long wait for treatment whilst sitting in a side room. I thought the wait was a one off before I understood how the drug is made at the hospital pharmacy.

Two years is a long time to constantly receive treatment, especially as I’d been on other treatments before, but I’ve been given another two years of a good life, so no complaints there.

Happy Independence Day!

The Fear Of Missing Out 

The past few nights I have struggled to sleep and have noticed there is a lot of tension in my jaw and I’m constantly clenching my teeth. On the whole I’ve had a few bad days but have tried to put my struggles to the back of my mind, but all in all I’ve been feeling a mix of emotions over the past few days. I think feeling fatigued and the lack of sleep can often make me very sensitive, almost bursting into tears and the drop of the hat about the injustice of my situation.

I have been part of lots of celebrations this summer, as well as exciting trips including going to the Edinburgh Fringe, but it doesn’t automatically wipe out all the negative feelings I battle with daily. I have felt very down and emotional at times. It has struck me how different my life is to that of my peers, over time this has become more and more apparent, and leaves me feeling angry and upset. I’ve mentioned in previous posts but I think my friends are more likely to attend my funeral than my wedding, and that is hard to accept. I’m envious of everyone who had a future ahead of them, or is about to embark on their next big adventure (which feels like everyone at the moment). I am genuinely happy for everyone who is travelling the world, getting married or having children, but it doesn’t mean I don’t feel sad for myself that I’m not doing those things, and it’s actually really really hard.

It’s not necessarily missing out now, but the fear about what the future holds, rather than the excitement I should be feeling. Everything is so restricted when you’re living on borrowed time.

I am able to compartmentalise my life, but only to a certain point, cancer and treatment is in one section, with all the negative emotions and thoughts. The rest of my life in others, but it doesn’t mean my sadness and grief for the life I’ve lost disappears. Lack of sleep certainly makes this worst, which I’ve felt over the past week.

In recent conversations I’ve noticed a few times people assume I work part time because I have children; so it’s often hard to continue the conversation, how do you explain you have a terminal illness?  Sometimes, when people ask what other creative endeavours I indulge in during my spare time I brush it off and say ‘oh not much’ because it’s too hard to tell the truth. The automatic thought is that I have a family, or I’m someone who works part time to moonlight doing something else I’m really passionate about, like volunteering or teaching yoga. The only thing I’m passionate about right now is staying alive!

A few weeks ago I was travelling during rush hour on the London Underground  wearing my Please Offer Me A Seat badge, its was really bush and a lady across from me assumed I was pregnant and tried to start a conversation with me that then became very awkward. I should have had ‘leave me alone’ written on my forehead. I told her I had a lot of health problems, but didn’t divulge too much. It made for a pretty awkward journey for the next few stops. Even if I were in a relationship and I wanted children I couldn’t anyway because of my treatment. So even if I’m lucky enough to meet someone who wants to be with a dying girl It’s never going to happen (thanks to that lady for the reminder that life has dealt me yet another blow). I know she had good intentions, but I thought it was very insentive, she has no idea about others struggles – it could be a really sensitive subject for anyone! I guess at 30 I am missing the boat on these options.

I’ve got the fear of missing out when it comes to future plans, which I previously touched on in my post My Greatest Fears earlier in the year. With everyone else moving forward I don’t want to be left behind. Life is unfair, and I spend many anxious hours awake each night trying to make sense of it all. Mentally, it’s overwhelming and very taxing. I used to get the fear of missing out over small things, like birthday parties, but now I feel the fears are much bigger and more justified. I know I don’t want these future options right now, but it would be nice to have the choice.

#FOMO

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.

The Travel Bug 

Over the past 12 months I have been abroad numerous times,  and have certainly been bitten by the travel bug. My 2016 trips have included a holiday to the USA to visit Austin, San Francisco and Minneapolis last January, and various weekends away to European cities, including Lisbon, Gothenburg, Berlin and Venice. I have been trying to visit as many cities as possible whilst I feel able, and I’ve enjoyed some wonderful adventures with amazing friends.

Sadly, I didn’t go travelling during my ill planned gap year. In retrospect, I wish that I had, but I can’t change the decisions that I made, or didn’t make, at 18. I could not imagine the path which lay ahead of me then. I assumed that I would have many more opportunities to go away and see the World. Nowadays there are numerous obstacles which prevent me from going on trips which are more adventurous than the Eurostar to Bruges, but just being able to escape for the weekend is good enough for me. It would seem that the World may no longer be my oyster, but hopefully Europe will be for a good while longer.

I am keen to make good memories whilst my health is not completely against me. It probably appears to others as though I do too much, which is often the case, but I am trying to squeeze as much as I can before I’m unable. I know some places are now no go zones, where I’d be likely to pick up a bug of some sort even if I was a 100% healthy person. I think Egypt is out of the question as well as a fair few others, but you never know what the future may hold. Being faced with my own mortality had certainly made me look at things in a very different way.

I have spent far too much time in bed recovering from operations, or just being generally too exhausted to move to last me a life time. I need rest but do not want to look back and wish that I had done so much more. There have been times over the years when I have been unable to get out of bed, or been in too much pain to to put on a t-shirt, or even brush my hair.  Of course, working part time has certainly had an impact on my travel wish list, but budget airlines like Ryanair and EasyJet make it possible, even if for just one night in Copenhagen with school friends. Who is going to turn down £16.99 flights each way?

If anyone knows of any good travel insurance companies who don’t run a mile when they hear the words ‘Cancer’ and ‘Stage 4’, then I would love to receive some tips or pointers. I cannot take out insurance without declaring anything as this would be void should I actually have an issue which needed addressing. I am now in a position I cannot risk anything, I could fall ill at any time, and I need reassurance and peace of mind that I’m covered for any eventuality.

From what I can gather from online research it seems to be impossible to get travel insurance for America, so I doubt if  I will be going there again anytime soon. I have travelled to a fair few states, so it is a shame that I feel that I am unable to return. It wouldn’t be a great place to be if my health took a bad turn. I just need to remember that I was lucky enough to be able to go in the first place.

Here’s to more adventures in 2017! I’ve planned trips to Lille, Warsaw and Rome so far, but new suggestions are always welcome.