Being Dealt A Bad Hand 

My stage 4 cancer diagnosis means that I miss out on so much, having serious health problems means there are many things I will not be able to do in my lifetime, which I find really upsetting. I have been dealt a bad hand in this life and at the moment I’m not coping very well. I’ve had sleepless nights over the past couple of weeks just wishing things could change.

People talk about elite members of society being the privileged few, but It feels like a terminal illness makes me part of the unprevileged few, not able to have opportunities like others can. All I want is a future. Why do bad things happen to good people so much? So many unasnwered questions!

I am so grateful for everything I do have, and that at the moment my treatment appears to be working, but I do get upset over the loss of opportunity that plagues me every day. So often people talk about life goals or future plans, but it’s sad for me, as I know cannot make those plans, as I won’t be able to achieve many of the things I wish for. It isn’t fair, It really isn’t. I don’t want people to think all I do is compain, but It’s hard not to be sad when I feel as though I’m staring down the barell of a loaded gun 24/7. I feel as though Ive been forced into playing a game of Russian Roulette. It takes all my energy to get out of bed in the morning and sometimes distracting myself from the horrendous situation by cooking and baking just isn’t enough.

I lack control over so much of my life, it’s frustrating that other opportunities and options do not come more easily. As a disabled person it’s great to get subsidised travel and free NHS prescription, but it’s a high price to pay. The opportunities to work full time, pay off my student loan etc are non existent which is hard when all I want in life is some stability amongst all the uncertainty. Just a small amount of control. Seemingly small things such as not being able to get a life insurance policy makes me feel like someone is telling me my life is worthless.

Each hospital trip fills me with dread and anxiety, I keep thinking that out of nowhere I could easily be signed off sick from work for weeks. The negative thoughts and worries constantly fill my head with the ‘What If’ secanrios. The sad thing is they aren’t irrational thoughts. I didn’t do anything to deserve this awful disease, but yet it found me regardless.

Society tells us we should have achieved a whole host of things in life by a particular age; from going travelling, establishing a career, perhaps getting promoted, finding a soul mate, getting a house together,  getting married, and then start thinking about a family. Although nothing in life is a guarantee for anyone, I feel I am not able to achieve these goals, and it makes me feel like an unworthy outcast. I know others might think differently, but I do see my health issues as a huge barrier. I’m so happy for others, but its still really unfair. I wish some of these things would be made easier for disabled people rather than harder. I wish more than anything I was able to do something to change it, If only it was simple. I want to run away from life’s problems and stick two fingers up to society. Sometimes society makes me feel like I’ve failed. Big time.

It’s amazing to see new lives entering into the world, and I admire my friends for their amazing parenting skills, however, for me it’s tinged with sadness as I know I won’t be able to have children myself. I just wish I had the choice rather than feeling like I have been robbed of the opportunity.  Similarly with feeling settled in a house, another constant reminder of all the options that are off the table for me. Travelling back and forward for treatment and not being able to put my mark on somewhere or save to put roots down is frustrating. I want my independence away from treatment, but it’s becoming more apparent I can’t have both, I’d just like to feel as though I have a future ahead of me like my peers and more choices.

The phrase health is wealth feels very apt, having a disability makes me feel like options are servelry lacking for me. I’m plagued by fatigue more and more every day and it makes doing things really difficult, much more so lately. I feel worse than I did when I started pembrolizumab a year and a half ago. I can feel so alone even in a room full of people who I know are my family and friends and care about me.

Of course, nobody knows what lies ahead, and naturally no one can have everything, but the grass certainly looks greener without stage 4 cancer. I’d like to be in anyone else’s shoes but mine just for a day, so I didn’t feel like I had the weight of the world on my shoulders. If there is someone upstairs looking down on us they clearly don’t like me very much. Sometimes at night I think about everything and get so worked up I can’t breathe and feel so overwhelmed with sadness it’s too much to bear.

I think mentally I’d be able to sustain this treatment and find some form of contentment if I knew cancer wasn’t going to kill me in the end. It’s so exhausting fighting a battle I know I am going to loose. I’m full on stress and anxiety with my next set of PET CT scan results just over a week away.

I want to be able to wave a magic wand and take the pain away. I wish I could win the Euro millions, and use it to do good and find a cure for cancer but until then I just have to keep going.

Why do bad things always happen to good people? I wish I was the quiz master with all the answers. I just want someone to hug me and tell me it’ll all be ok and teach me how to play my cards right with this terrible hand I’ve been dealt.

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.