Finding My Focus

With 2018 now in full swing, some people choose to make resolutions moving forward. For those who are experiencing cancer, or have been affected by it in the past, these resolutions aren’t always about creating new hobbies, such as taking a photograph every day for a year, taking the stairs at work rather than the lift, or going to the gym more.

So far this year I have started cutting back on things in my diary, rather than doing more. Starting a new job with more hours is really challenging for anyone, so I’m trying to stay one step ahead at all times, and finally learning when to say no rather than being a yes man. If I think too much activity is going to jeopardise my health and make me more fatigued, particularly in the winter months, I’m going to say no. I already feel better for making this conscious choice, therefore the prospect of a 40 hour working week doesn’t seem as daunting any more.

I always like to keep people on side and agree to everything (I love brunch and eating out too much), but with a terminal illness it isn’t practical to say yes so often. I am trying to regain my focus and think about what is really important. Previously my attitude would have been that I am admitting defeat by saying no, but really it is learning to look at something from another angle. Despite always wanting to please people and be liked, I already feel much happier and brighter with more sleep and planning down time in my diary. I need my body and brain to function well so I can concentrate on learning my new role, making sure I am not feeling exhausted by lunchtime.

By taking a break for over filling my social calendar, I can really enjoy spending with the people I can about. It has now become more about quality time than quantity. A couple of friends came to stay with me London at the weekend, usually I feel the pressure of being a host and having to show people all the favourite tourist spots, but coffee and chilled out catch ups in pyjamas were just what was needed. I am sure that this will not always be so easy for me, but my health is my number one priority, and I think I’ve forgotten that at points over the past year. I’m starting to feel much better than I have done over the past few months just by making this choice and forming a new routine. Who knew that having breakfast before setting off for work rather than at my desk would make such a difference?!

There are only 24 hours in a day, of course it would be easier if we had an extra day a week, but time is limited. If I’m spending enough time sleeping, and around hour and half travelling to and from work, and another eight or so at my desk Monday to Friday, that doesn’t leave too much time for relaxation and leisure activities. Going for my treatment exhausts me for about a week, then after a break the cycle begins all over again. I’d ask that people don’t write me off just yet, I still want to be included, but I need time to adjust to a new regime, so If I’ve been less responsive this is most likely the reason why. I really appreciate texts, cards, home visits and coffee dates, and I promise I will see everyone, it just might take a little longer to find a time that works with my new routine.

Festive Feelings 2.0

Christmas 2017 is a day away, and it seems like only yesterday I wrote the first Christmas blog post Festive Feelings, but 365 days have passed and a lot has happened over the past year.

On Monday I went on a Christmas trip with my Mum and Sister to Brussels, which makes a huge change from the week before Christmas last year, when had my ninth cycle of Pembrolizumab. So far I have had 25 cycles of the drug and all remains stable, which is more than I could have wished for during 2017. I am pleased to say I haven’t had any last minute hospital dashes or huge scares over the past few months. I am also very lucky that I haven’t had another major operations in 2017. Once again, hospital is the last place I would want to be over Christmas, and am really grateful to be an outpatient, particularly at this time of year.

I often start to worry about the year ahead and the challenges cancer might throw at me. The unpredictable nature of the illness has been a huge part of the anxiety I have been experiencing lately. Melanoma is never far from my mind, particularly during the festive season.

I’m grateful to be well enough this Christmas to enjoy it again, although I’ve been feeling very down over the past few months I know how lucky I am. Overall it doesn’t matter how many presents someone gets, how expensive they are, how festive the house looks or how big the Christmas tree is. There are much bigger problems in life than what films to watch on Christmas day, or what gifts to buy family and friends. What really matters is spending time with people I care about, and trying to be as happy and positive as I can moving forward.

2018 marks a big change for me, I recently got a new job which I am due start in January. I am excited to have a new focus, and for the new challenges that will come with it.

Wishing everyone a Merry Christmas and a Happy New year!

The Season Of Good News

Following a recent report from Macmillan, there have been a series of articles in the news over the past few weeks stating that there are now thousands of people in England who have the most advanced cancers, and that they now surviving for several years after their diagnosis. There has been a lot of coverage in the news, for example on the BBC and Guardian websites.

The research, revealed at the National CancerResearch Institute Conference in Liverpool is based on data from England’s national cancer registry. The data captures people who were diagnosed with one of ten different types of cancer between 2012 and 2013 and were still alive at the end of 2015. For me, this isn’t really breaking news so to speak. Two years doesn’t seem like an awful lot of time to me, but its better than nothing, and who knows what the future will hold. It is of course good news! The data shows that new and improved treatments such as immunotherapy mean some cancers can be more manageable, similarly to that of other long term chronic illnesses. Sadly, this is by no means a cure. I still have a terminal illness, and I am still dying, but at the moment the disease progression is slower than I have been predicted in the past.

At my last appointment with my oncologist in Leicester I was told that my most recent PET CT scan was stable, there are no signs of disease progression at present. I ultimately can’t change the path my life has set out on, but I am always so happy to hear those words.

I have been a cancer patient my whole adult life, and stage 4 patient for over 7 years. Last May, after my second bowel surgery to remove melanoma one of my surgeons suggested I should think about giving up work altogether, given my diagnosis. Although that person was clearly incorrect, moments like that really hit home, and are a terrible reminder of how cancer has changed my life irreversibly. It bought me back down to earth with a huge thud. Life isn’t as simple when melanoma is involved.

My friends and family often comment on how brave I am, and suggest they wouldn’t be able to do the same in my shoes. I just try my best to get on with my life, I have no other choice. There is no other way to deal with the situation, so it’s actually pretty simple, despite my life being overly complicated. I would be lying if I said it wasn’t mentally and physically exhausting to get out of bed every day and carry on like there is nothing wrong; but there is no other path I can take, no alternative route. I feel unwell and exhausted a lot of the time, more than most people realise, but I just have to get on with it.

Lately, I’ve had many more down days than I have done previously, there has been a lot of late night crying in bed. I need to keep positive, but its those moments when I am all alone and more vulnerable that I think too much. I’m not finding baths as relaxing as they give me too much thinking time! When the door is locked it feels like a gateway to my emotions opens up and everything comes flooding out. I am trying to be kinder to myself and allow a few melt downs or sad moments which I otherwise would have brushed off. it is worse to bottle everything up, but emotionally it drains me of strength and energy.

I am still the same person inside, however I am just overly emotional at the moment. I’ve cut down on a lot of social activities in the lead up to Christmas and December is upon us. I am finding sometimes it’s just too much for me, particularly with the seasons changing. It’s so dark and cold outside, I want to go home straight after work and sleep. Sometimes this can be detrimental, as it gives me more time to dwell on negative feelings.

The positive news about my PET CT scan is something good to focus on, as well as all the exciting events in the lead up to Christmas time. It might be dark and cold but T’is the season to be Jolly! Perhaps this is the season of good news.

A New Reality

Two weeks ago I had an operation at the John Radcliffe Hospital in Oxford which I wrote about in my previous post Another Hospital Stay. The operation was closely followed by another cycle of Pembrolizumab. I didn’t realise how much of an effect a general anaesthetic can have on a person, I’ve had a lot more rest than usual and have been sleeping around 10 – 11 hours a night. This weekend things haven’t gone exactly to plan, having a severe bout of sickness has meant I’ve been on bed rest for the last couple of days, so all my work and bank holiday plans have gone out the window. No mater how much you work towards something, how much time and effort you’ve put in, cancer can take that away from you in an instant. After a couple of frantic calls to the chemotherapy 24 hour emergency helpline fearing that I would need to go into hospital things have now eased off. An unplanned hospital trip is my worst nightmare, and it with it being bank holiday could have been a long ordeal.

I have lots of celebrations coming up in May and a busy few weekends, including a trip to Prague. Its never easy living like this, life isn’t always as it seems from the outside. One minute I’m busying myself with work to distract myself from reality and the next I’m napping for numerous days in a row, or suddenly unwell. I’m either stuffing my face or have no appetite and I’m not really feeling a happy medium at the moment. Situations like this make me wary of making new plans. This summer I am going to six weddings, but I’m now panicking I won’t be able to make it to all of them, no matter how much I want to be there. In the past I’ve missed a number of weddings due to surgery or hospital treatment, so I’ll be hugely grateful if I manage to attend all of these event over the summer months. Cancer is my new reality and I have to take it one step at a time.

I don’t often let things hold me back but sometimes my situation changes rapidly and things become out of my control. Having my operation with one weeks notice was hard, it felt like bad timing, but with treatment cycles every three weeks there was never going to be a good time. I might not always portray it that way, but life isn’t a walk in the part, I struggle a lot with finding balance, I just try make the most of things when I am able to, but sometimes that comes at a price.

I often lay awake at night thinking about my future, and if there will even be one. We all know how this will end, but it’s still impossible to believe! Surely this can’t be my life? Of course the prognosis is bad, but it appears Pembrolizumab has given me a life line for now. Sometimes I don’t know what to think anymore because it doesn’t feel like this is normal. I’m sill working and going about my daily life. How can this really be happening to me? I know I have to accept it as a consequence of being alive, but lately I have been finding that waves of illness and generally feeling exhausted are becoming more and more frequent. It saddens me to think my life has become like this. A new reality.

I know I’m lucky to have lived well for so long, and that despite a few bumps in the road recently, for the most part I am continuing to do so. There are so many people who have been taken too quickly, or far too soon. Shortly after starting my own blog I came across two incredible blogs from melanoma patients who have since passed away, Wrestling Melanoma and Dear Melanoma. Reading these blogs made me realise that I wasn’t the only young person going through such an ordeal, and they gave me the confidence to keep writing about my experiences.

Like many Stage 4 patients I know what’s coming, but I can’t imagine what my family will do when I’m not here anymore. In some ways I refuse to believe it, because for me It would be accepting defeat. I have already been alive for 6 and a half years since my Stage 4 diagnosis, around 5 years longer than predicted. I have learnt that sometimes there are situations which we cannot change, no matter how much we want to. Although we don’t have control over what has happened previously, we are the ones who make our life what it is. I could look at this negative situation and (often rightly so) see nothing but darkness, or I could look and see the glimmers of light which show hope. I guess it is how we deal with these situations shows our true personality.

The bottom line is, it really doesn’t matter what type of cancer someone is diagnosed with, how old they are, or what the overall prognosis is. When your life is on the line and it could be cut short without notice its completely terrifying. Wondering if you are going to live or die or not something anyone should have to go through. It is ok to not have the answers, I know I don’t. Its really difficult to fully understand what goes through another persons head until you’ve experienced that death is there, just waiting for you around the corner. Sadly its a frightening reality for some.

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.

Why I Make It Work

I recently took part in an online Facebook Live Q&A on behalf of Trekstock with Barbara Wilson, the founder of Working With Cancer. Work has always been a very important to me since my initial diagnosis, and over the past six years it has offered me a sense of purpose and an opportunity to focus on something outside of the relentless cycle of hospital appointments.

Since graduating from University, I have moved jobs a couple of times and was, until recently, in full time employment. I started working part time in July 2016 when I began receiving Pembrolizumab, which requires hospital visits every three weeks, rather than my previous cycle of once a month. Although it was devastating to reduce my hours as I felt as though I was letting go of control of my situation, I knew that it would be for my own benefit. I am pretty sure that nobody on their death bed has ever said that they wish they had worked harder during their lifetime. The work / life balance is much needed in order for me to cope with the treatment cycle and also to do things for myself. Asking the questions on behalf of the Trekstock Network reminded me of just how important this is for me.

I am certain that without the focus of work, I would not have had the determination to bounce back so quickly from operations and treatment. This has made the prospect of work even more meaningful than before. Over the years I have had various stints of time off work, the longest being when I was initially diagnosed with stage 4 melanoma in 2010. I left my first graduate job for a period of six months to recover from having both brain and lung tumours removed. I needed to be at home with family whilst I got better, but I yearned for a sense of normality, and looked forward to returning to a familiar routine, and having my independence reinstated. I had only been employed for a very short time before I had to take this time off, so I felt very short changed. As mentioned in my first post 11 Years, It was not the post graduate success story that I had set out for myself. Despite not having known the team for very long, returning to work made me feel as though I had never left, and they  became some of my closest friends. I found the transition back a huge challenge on both a physical and mental level.  Despite any distance that may have come between us over the years, we shared an experience which has sealed our bond of friendship forever.

Once again another six months of my life has been so easily swallowed up by hospital visits and cancer treatment. This is it. This is my life and my future. Most people get bored of their work routine, but for me it makes me happy to have a reason to get out of bed three mornings a week; a reason completely unrelated to my illness. I want to live as normal a life as possible.  To be someone who goes to work just like the majority of the population my age is key. I like living in London and enjoy my routine, sometimes it can be a little boring, but it beats living at home with one of my parents and not working. I feel that if I had decided to stay at home long term after my operations six years ago, my attitude and outlook would be very different. Work is a huge factor in this. My job might not be rocket science compared to others, but it certainly keeps me sane. Why should my life be any different? It helps me to feel needed and as though I make some sort of difference. I know that when the time comes for me to give up work completely I will know that I am on a downhill slope.

Whilst recovering from  my second bowel operation in May 2016, time seemed to go really slowly, and yet looking back, these last six months as a whole has seemed to pass me by with no clear definining moments other than those which revolve around illness. It sounds negative and depressing when written down, but If anything It has made me realise what really matters and what I most value. Most of the time I don’t feel depressed about it, just determined to put it all behind me as quickly as possible. I know that I can never fully move on, as I will never be cured of cancer, but I would like to try and finish one chapter and start another which I am hoping will not be as bad as the previous one.

Of course, starting a new chapter is dependent on what happens when I have my next PET CT scan which will be towards the end of January. I do know that I will keep working for as long as I am able, I am certain about that. I make it work because having a job is an amazing outlet for me, and makes me feel relatively normal.