The Results Are In

I have now been sharing my story via my blog for almost two years, and luckily in that time have also remained stable on my latest Immunotherapy drug, having had my last major surgery in the summer of 2016.

This week is also very significant as it marks exactly 13 years since I was initially diagnosed with stage 1 malignant melanoma via a mole on my neck when I was only 18 years old. I have now been living as a stage 4 patient for almost 8 years. I was told back then I may not make 25 and now I’m 31, struggling sometimes but I keep picking myself up again. Cancer has been with me my whole adult life, which is something I don’t think I’ll ever be able to accept.

In some ways my stage 4 diagnosis seems like a lifetime ago, but in others not much had changed. Not long after I had started recovery from surgery to remove my brain tumour and lung tumour I moved to London ana went back to work. I’m still living with friends in the capital city and attempting to navigate the working world as best I can. Around three years ago I moved form South West to East London, so it almost feels like London is a new city, having discovered parts I would never have seen before.

I still get too caught up in the moments when I feel well and then book in too many activities, so last weekend I spent a lot of time relaxing and napping in preparation for the week ahead. I had a chest infection and needed antibiotics, which I think have since cleared everything up. I need to be on good form for the Northampton Half Marathon on Sunday to raise funds for The Lewis Foundation.

I had a PET CT Scan last week and travelled to Leicester to get the results yesterday. I am delighted to say my news was all very positive and takes the pressure off over the next few months.

However, no matter how many times I’ve heard positive news over the last two years there is always the fear my world will fall apart again at any moment. In some ways it feels like I’ve been given a golden ticket, but tomorrow I could find out it’s actually fake after all. I am of course relived, but the fear doesn’t disappear over night.

I’m now very used to the three weekly routine and cycle of my treatment, in way it has become staple part of my life up until this point. Travelling to and from the hospital gets me down, it’s mentally stressful and physically exhausting, but it’s nothing if it means I have a functioning life the rest of the time. I need to try and shift my attitude so that I am ‘living with’ cancer rather than all the negatively that plagues me about dying from it.

Here’s to LIVING!

I Should Have Been Dead By Now

It’s almost my 31st birthday. This year, like every year I’m beyond grateful to have had another 365 days on this Earth. Looking back over the previous year I realise how much I have achieved. I might have travelled less than previous years, struggled a lot with my mental health, and seen friends and family less frequently that I would have liked, but I’m still alive. Quite frankly I should have been dead by now. In fact, on paper it should have died years ago.

I was told upon diagnosis in 2010 that people with my type of cancer at such a late stage lived for an average of 18 months. There have been numerous points over the past few years when I truly thought that I wasn’t going to make it for much longer. Having been diagnosed with stage 4 melanoma in two sites (brain and lung) at 23 it was a shock I made it to my 25th birthday, let alone my 30th last year.

Any money I have managed to save during working life has gone towards living a good life when I’ve worked less, paying for been able to live independently when I’ve been signed off sick from work for weeks on end, or going on trips and holidays to make the most of life when I’ve been feeling well enough. Saving towards a house or something more substantial feels impractical because I’m not sure I’ll have a future to be around and enjoy it. Now I’m 31, but I’m not sure how much ‘good’ time I have left.

Two years ago I was in hospital, having had surgery to remove cancer from my bowel for the second time. I had hardly any hair of my own, and what I did have was unrecognisable from my usual self. Four years I was also spent my birthday in hospital, having initial been admitted for suspect appendicitis at St George’s Hospital in London. It turned out to be my first bowel tumour and marked the start of me receiving systemic cancer treatment in hospital every few weeks.

I do feel as though I put pressure of myself to do things whilst I am well enough and feel able, therefore making the most of the time I’ve got left until I start to deteriorate. In reality I want to make the most of things, however lack of time and energy are huge factors. Naturally I want to make most of what I’ve got now, but I also need to stop, look around and appreciate what I have. It might not last must longer, so I need to pause and take stock. Some days are better and others are much worse, and accepting that has been one of the hardest parts of living with cancer.

When I was in my early 20s I thought I wouldn’t see my younger siblings grow up. Now they are grown up and are taller than I am! In a way time flies, but the long road has been full of twists, turns and more than my fair share of major challenges along the way. I’m often trying to charge forward in life and catch up with all my friends along the way, but I need to accept this is unlikely. Just to be alive and well feels like a miracle sometimes.

I should have been dead by now, but I’m still alive and considering my dire prognosis it’s a huge win for me to be doing so well.

Down To Earth With A Bump

I’ve taken a bit of break from blogging over the past month, it wasn’t a conscious decision, but a combination of a new job and various busy weekend activities has meant finding time to sit and write hasn’t been at the top of my agenda. When I’ve had some down time, my priority has been to eat and sleep and generally prepare myself for the next few days ahead.

Generally things have been going well, and I am due another PET CT scan in a few weeks time. However, I was feeling almost on top of things until earlier this week, when an unexpected headache lasting almost four days bought me back to down to Earth with a huge bump. However much I try to push it away, cancer always ends up at the forefront of my mind. It’s a reminder that my cancer will never go away, I will not be one of those patients who gets to ring the bell in the chemotherapy suite at the end of my treatment whilst onlookers cheer and clap, celebrating a successful voyage into a life post cancer. I find that whole process very strange, but I know my headache was a reminder this won’t be me.

There are many reasons for headaches, my suspicions says it was due to not drinking enough water, stress and tension; but another part of me will always fear it’s a reoccurrence of brain metastasis. I know too well that this is not an irrational thought, having joked to friends years before that my symptoms suggested a brain tumour, only to find out a short time later that I was right all along. Usually I like being right, but not then.

Having drank copious amounts of water over the past 72 hours I’m feeling much better than at the start of the week, both physically and mentally.

I’d been panicking a lot over the past few days, I know things could be much worse right now, but I also know I’m not ready to die yet, and the thought of having another brain tumour filled me with fear, most likely making the headache ten times worst. It was a huge reality check. My life is never going to be easy or plain sailing, but I am doing well right now, and I must keep telling myself that. There are so many more things I want to see, do and accomplish in my lifetime, even if it’ll be short. I am not ready to go, death isn’t on my to do list in the near future as far as I’m concerned. I don’t think I’m scared of dying, but worried about leaving others behind.

Now I’ve come back down to Earth with a bump, I’m going to take some more time to rest and hopefully start to feel on good form again, even with my next dose immunotherapy just a couple of days away.

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.

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.

World Mental Health Day

World Mental Health day took place this week, and I saw lots of long posts on social media about the importance of looking after all aspects of our health. The day aims to draws attention to the importance of mental health and increase education on the subject which people often shy away from. Having stage 4 melanoma has hugely impacted both my mental and physical wellbeing. Knowing that I am dying, that something inside my body is killing me, and I’m constantly having to fight it off is often too much to process. 

Receiving a diagnosis of a serious illness such as cancer can have a huge impact on a persons mental health, and I have felt this over the past few years, particularly since receiving different chemotherapy and immunotherapy treatments. Thanks to my terminal diagnosis It is normal for me to experience huge levels anxiety, worry and fear on a daily basis. I touched on this previously back in April in a blog post called Maintaining Mental Heath, which focussed on the importance of exercise, It’s amazing how much a little exercise can help mental wellbeing. I sometimes take part in the occasional Parkrun, my time has actually gotten worst since I first went, but I do feel better for taking part. I tend to walk / jog the route, but its better than not doing it at all. I’m focussing my breathing rather than all the other negative thoughts that cloud my mind every day.

Having cancer is so draining, and the frequency of doctors appointments and hospital visits often adds to my anxiety and worry. Over the past seven days I’ve been to the GP twice and the hospital once, and I’m due to go in for immunotherapy tomorrow. Sometimes it just feels like too much! I’d love to escape somewhere for a few weeks with no hospitals around.

I’ve read a lot about Post-traumatic stress disorder and the effect it can have on cancer patients. People experience flashbacks and panic attacks as a reaction to exposure to very stressful and traumatising events they’ve experienced in the past. I’ve truly never really appreciated being mentally well, and the impact being unhealthy can have on a persons life until mine completely changed. I’ve always been a stressed person; school and studying at University were huge challenges for me, constantly worrying about deadlines etc, but that’s nothing compared to the way I feel nowadays. I once tried to see a psychologist when I was first diagnosed with stage 4 melanoma, but back then I felt worse for it. It was another trip to the hospital I just didn’t need! All my friends were embarking on new careers whilst I wasn’t well enough to get out of bed in the mornings, let alone go to work, and talking about it felt like a constant reminder of what I had lost. Years later I tried to seek counselling, and was fortunate enough to be referred by my GP to a local service in London. The idea with the sessions meant I had to commit to seeing someone for at least twelve weeks, however as I was about to mention this to my work I found myself back in hospital undergoing life saving surgery.  I never managed to make it to my first appointment, and since then I haven’t attempted to try again.

I know that I will always continue to experience these negative feelings and sadness because I am still having treatment. I am about to undergo my 23rd cycle of Pembrolizumab. There is still no end in sight, my treatment will continue, and I know I have to try to accept this. There is no being ‘out the other side’ of cancer.

Being in the know is very helpful when it comes to my diagnosis, I like to have as much information as possible so I feel like some things are within my control. I had a PET CT scan late last week and will get the results in three weeks time. I hope it will be ok, but I don’t think I can ever be that confident it will be. Ultimately it won’t be ok, and the longer I am well, the closer I am to becoming unwell again. Yes, it being mentally draining is an understatement! I live my life in cycles of twelve weeks, so I am really hoping I can continue on Pembrolizumab and refocus after I received the results. I really want to enjoy Christmas and New Year.

As I get older I find mental health problems seem more common than I once thought, but perhaps that’s part of being an adult and being more aware. Sometimes it’s ok not to be ok, I know I have both good and bad days, and have to accept that. Tomorrow is a new day as they say! I’m sure there are some people reading who have or will be effected by mental health during their lifetime, either themselves or by knowing family or friends who have struggled. Luckily I have a strong network of people around me to talk to, as well as using this blog as an outlet for my feelings.

My Fifteen Minutes Of Fame

Since A Time To Live aired on BBC Two last month I have been overwhelmed by the response from family and friends as well as members of the general public. I’m really glad I took part in the documentary and feel all the stories were really well thought out; it was joyful and touching at the same time, and remained true to life throughout. I hope it may help others who might be in a similar situation to me.

A short clip of my story appeared on the BBC News Facebook Page shortly after A Time To Live aired, and within 24 hours it had been viewed a staggering 1 million times. Yes, 1 million! Currently the viewing figure stands at 1.2 million. It’s crazy to think my story has been seen that many times and shared by total strangers all over the world. The feedback on the whole has been overwhelmingly positive. As I mentioned in one of my last blog posts, Not An Average Morning the decision to take part wasn’t always easy, and isn’t something I would have considered this time last year. Personally I believe that in some ways part of a healing journey and a great step forward for me, helping to distance myself from a lot of negativity surrounding my illness.

I originally decide to start writing about my experiences with Stage IV melanoma for the following reasons.

1) Many people that I know said I should, because it may be therapeutic, and help me to be less angry and upset about the situation I am in.

2) There didn’t seem to be many other people out there doing the same thing.

3) I had never encountered a single person of around the same age who has the same type cancer as me, or even any form of cancer.

4) It would a great opportunity to raise awareness of melanoma.

In the six months since I began writing and filmed my part in the BBC documentary I am proud to say that I have achieved all or part of the above objectives. I’ve had various messages from people over the past few weeks, from old school friends to complete strangers. I’ve had emails, handwritten letters, Facebook messages and telephone calls. I even had a delivery of flowers to my work from a local lady who wanted to wish me a happy birthday. She said my story touched her and wanted to tell me I was inspiring. I haven’t done anything specific, I’ve just been honest about my feelings to a big audience. The kindness of strangers is incredible, and its great to feel my story has resonated with so many others. Last week I was leaving work a lunchtime and a woman who past me in the street stopped me and said she’d recognised me from the film, and proceeded to tell me how great I was. I’ve never received so many compliments, it has been a glimpse of what it must feel like to be famous.

Prior to the film airing I had been feeling very nervous, however I’ve now had my fifteen minutes of fame, and it wasn’t nearly as scary as I thought it would be. Actually, it has been pretty cool. I’m no one special, and there are plenty of other people having an equally rubbish time, but with all the madness happening in the world right now it is nice to see something having a positive impact. Thank you from the bottom of my heart to everyone for the lovely messages of kindness and support, apologies if I haven’t got back to anyone directly, it has been a hectic few weeks. I want to take this opportunity to send love to all those reading this, weather you have been personally affected by cancer or not I really appreciate it. I  honestly cannot put it into words exactly what it means to feel such love and support.

Back in the real world I have a PET CT scan coming up in a couple of weeks so I am hoping for stable results. There will never be a time when I don’t worry and loose sleep about this, I am only human after all. This is the bit that gets no easier not matter how much times passed. You’d think that after nearly seven years as a Stage 4 patient I would be used to it. I am trying to not to loose my mind whilst I wait for the next few weeks to run their course. I have another European adventure panned and plenty of work activity to keep my mind occupied, I also went on a long walk this morning to get some fresh air and am feeling better already.

Not An Average Morning 

This week has undoubtedly been one of the strangest weeks of my life. I began with treatment in hospital, part of my normal routine. Tuesday was followed by a live interview on This Morning on ITV with none other than Holly and Phil, and a double show day at the theatre. The BBC docoumentaty I participated in, A Time To Live aired on Wednesday evening on BBC2. I flew to Prague on Wednesday morning to visit friends prior to the film going out, so all in all it’s been a bit of a whirlwind. 

After filming my interviews for A Time To Live last October I put all thoughts about it on the back burner, and they only resurfaced a couple of weeks ago when the air date was confirmed. In a way I’m glad that I was out of the country, as I might have found if difficult watching with others. My section features cameo appearances from both my work colleagues and school friends, but I’m glad I watched it on my own, seeing the whole thing come together felt like a really big accomplishment.

I was lucky enough to be asked by the BBC press office if I’d be interesting in taking part in an interview on the This Morning sofa with Holly and Phil with Annabel, another participant from the documentary. Certainly not an average Tuesday morning activity! 

It’s true, the prestenters are lovely in real life and made me feel at ease despite my nerves. I can’t believe I actually went on live television, I was panicking I would get tounge tied and say something wrong. One of my friends joked that I should make sure I let the presenters get a word in! I can talk a lot but I don’t think television interviews come naturally, this is why I am not a performer after all. It could be that,  or maybe it’s the lack of talent. 

Having been to TV studios before for work it’s something I’m familiar with but I’m always impressed with the organisation of everyone to keep things running so seamlessly. Usually I am the person arranging interviews for others rather than being interviewed myself, so I’ve experienced the other side of the PR industry. It was a nice treat to get my makeup done before my big moment, I wouldn’t mind that more often. 

Sue Bourne from Wellpark Productions and her whole team have created a beautiful film about living on borrowed time and I am really proud to have been a part of it. The reception has been great, people have sent some really lovely tweets and messages which is surreal but also amazing to know that it’s had an impact on others. It seems a lot of people have found comfort and positivity in watching it. I know if I wasn’t part of it, the film would be the type of documentary I’d watch. 

If you missed it, A Time To Live is now available to watch on BBC iplayer in the U.K. 

What Having Cancer Has Taught Me

During the past few weeks I’ve been thinking a lot about my situation and what I’ve learnt from it. Being unwell has taught me a lot, including some valuable lessons. Of course, I would change this all in a heartbeat if I could, but I can’t turn back time.

Cancer has taught me It’s ok to be upset.

Over the past 11 years I’ve tried my hardest to put a positive spin on things, even when feels like there is no hope and I am loosing control altogether. Over the past couple of years, particularly since starting active treatment, I’ve established that that it is fine have down days. I am often my harshest critic and I have to remind myself of this from time to time. I often have days where I feel very emotional, when I wake up in the middle of the night with bad thoughts running through my head, it leaves me feeling emotional and exhausted.

When I wake up in the mornings there is sometimes a brief few seconds when I’ve forgot about having Melanoma, but that respite is all too brief. I reminded of this almost instantly, and I’m constantly plagued by thoughts of cancer and illness throughout the day, about how unfair and cruel life can be and that I can never turn back time. I know It’s ok to cry and be upset, I spend a lot of time holding it in, sometimes it helps, but I don’t think it will do me any favours in the long run. I often think I have bouts of depression, but figure that its understandable considering what my ‘normal’ is.

Every day I have moments that are constantly preoccupied with thoughts of dying, but then then I do my best to move on. If I didn’t my anxiety levels an my heart rate would be through the roof every hour of the day. No one likes being surrounded by negativity all the time, so I try to keep my distance from it.  It’s awful, yes, but right now it could be much worse and my life is so much more than having cancer.

Cancer has taught me a smile goes a long way.

Having a series of regular appointments for treatment means I’m all too over familiar with Leicester Royal Infirmary’s Oncology Suite. It’s a place I know like the back of my hand, and I hate the way it’s not unusual to me. There is an all too familiar smell in the air; of disinfectant, drugs and school  canteens. I feel like I come away at the end of a treatment day smelling of hospitals. When I go to the gym, I don’t even like putting a wristband on because it reminds me of being a hospital patient.

My appointments in the chemotherapy suite for my Immunotherapy often last all day, literally! Being out of the house for 12-13 hours every time is exhausting. Essentially I have to go to get my bloods done, see my Oncologist, and then as long as my team are happy with my bloods I’m ok to have treatment. Due to cost implications the pharmacy at my hospital make up the immunotherapy drugs in large batches, once all the patients who are receiving Pembrolizumab are ready for treatment. It can be very frustrating having an appointment scheduled for a time that is essentially completely fluid depending on other patients and how well staffed departments are that day. Currently I have Pembrolizumab with the same cycle of about six or seven other patients, so I know I’m not the only one playing the waiting game. Being at the hospital is a stark reminder of reality, and it’s challenging being surrounded by other unwell people all day. The staff are great, but the mood on the ward is often very somber. It’s like we’re all on the waiting list for an exclusive club that we don’t actually want to go in or be part of. There are a lot of unhappy or sad looking faces on the ward. In these circumstances I’ve learnt that a smile goes a long way and can often make the world of difference to me when having treatment. It reminds me I am not on my own.  I’m pretty sure every patient there would be somewhere else given the choice, it isn’t a place we get excited about visiting, there are millions of other places I’d rather be.  I try to smile as much as I can, a joke, an offer of a sweet or a smile back from another patient or nurse makes it all a little less painful.

Cancer has taught me to be kind to my body.

Cancer has taught me I need to be kinder to my body than I perhaps once was. Good food, rest and sleep are all key, especially during a treatment week.  Naturally, this doesn’t always happen, but they really go hand it hand with one another, and the combination often makes me feel so much better. I know I shouldn’t underestimate the power of rest, my body needs It. I try to go to the gym regularly, but have decided not to go in the week after I’ve had treatment. It only makes me more exhausted and it’s not worth it. I’ve had rest week during my last two cycles and I think it works well, going to work is a challenge, but it’s doable, so I don’t need to make any more difficult by going to the gym and meeting friends in the days following. Since trailing this, I’ve felt almost back to normal after about six days and ready and energised for whatever is thrown at me. Being kind to my body, and allowing myself to cut it some slack has been really beneficial. What better excuse to have a lazy week and use the cancer card anyway? I need to try and keep my diet varied and healthy, but sometimes this can be easier said than done. I’ve given up chocolate and fizzy drinks over Easter, just to see if I have the will power. I’ve had my moments but on the whole I’ve cut back which is a great.

Cancer has taught me knowledge is power.

Knowledge is power when it comes to feeling in control of my treatment. More often than not I overhear conversations in the Oncology waiting room with other patients and their familIes who seem as though they aren’t necessary as clued up on their treatment and how it’s going as I am. As the youngest person there by at least 30 years maybe it’s a age thing, or perhaps they don’t quite accept how ill they really are?. I like to know where I stand, and what options might be open to me later down the line so I like to keep abreast of developments in cancer treatment in the media. There have been a few breakthroughs in the treatment of Melanoma over the past few years, with Pembrolizumab being a drug I read about prior to recieving it. I sincerely hope they are more to come. On the flip side, there are the Daily Mail type articles which suggest anything and everything have the ability to give you cancer, or stop you getting it in the first place. I’m all for a fad, from chia seeds to my latest discovery of bitter apricot kernels, I agree that every little helps it if makes me feel like I’m doing my bit to help, including cutting out the sugar, but I know eating broccoli everyday isn’t going to cure me. Nothing will cure me now. Call my a cynic, but if one food such as broccoli really was the elixir of life we’d all be getting it by the shed load on the NHS wouldn’t we? Perhaps an annual broccoli jab?

Cancer has taught me I am a strong person.

The most valuable thing I have learnt since having cancer me that I am stronger that I think. Cancer is a huge part of my life but it’s not everything I am about. It doesn’t define me. I am a sister, daughter and friend; I am an aspiring traveller, dance and theatre enthusiast, brunch lover, keen writer, documentary fan, wannabe chef, and a sometime gym goer. I know that I am not really a good runner (despite my best efforts), I am not an avid fiction reader, cyclist, or confident swimmer (I’ve never really been sporty, it’s the lack of coordination, you won’t catch me doing the London – Paris bike ride) I’m not a coffee drinker, or a master at arts and crafts, I can’t hold a tune and I don’t really have a good sense of direction. I am strong though, and right now that is what counts.

My Greatest Fears

Over the years I have been in a constant state of denial about my health, I guess I’ve always felt that accepting my diagnosis means I am no longer willing to fight for my life. I touched on these feelings in one of my earlier blog posts, Before I Kick The Bucket and I feel the time is right to talk (or write) about this topic again in a bit more detail!

Lately I’ve been finding it even harder to switch off knowing my next scan date is around the corner. I often lay awake at night thinking about my illness; sometimes I can’t believe it’s actually my life. When I’m proofreading my blog posts it feels like I’m reading another person’s story, not my own.

The bottom line is I am scared about what the future holds.

I try to live as normally as I can and not fear the future, I try not to think about being a stage 4 cancer patient, and refuse to accept this is my life. For the most part it works for me, as I feel stressed when I think more deeply about how my illness has affected my choices in life, and the future I may or may not have.

I grieve for all the things I’m yet to achieve, and probably won’t achieve in this life. I hate that cancer will always be in control of my life and I have no say on how things will pan out. Although it’s given me a different perspective on things, I still feel angry about what I won’t have the chance to experience. I’m standing at the edge of a vortex, waiting to be sucked in at any given moment without warning.

Thanks to cancer I no longer feel bulletproof.

In many ways I am still the same person but ultimately I no longer have the same outlook the 17 year old Jolene did. Part of that is growing up but it’s also the harsh reality of the world I now live in.

I am all too aware that I focus on the things I cannot do, rather than on the things I can do. I know this is to my own detriment and I do I need to learn to accept it and move on, but it is very hard. I don’t just mean this in a physical sense, but in all aspects of my life. I am fragile and in so many ways I am a million miles away from the person I was before cancer took control of my life.

I always think “If I had known then what I know now, I would have done this or that differently”. I often dwell on the fact that there are some choices I would make differently if I had my time again, but who knows if it would have actually been any different. For example, I’d like to think I would have gone travelling but maybe I’m just not a backpacking kind of girl!

I’m scared I will not grow old

They say life begins at 30, or could it be 40? I’m approaching 30 later in the year, and I’m not really sure how I feel about it. On the one hand I’m so happy to have made it this far all things considered but as my friends and I have grown older I’m now becoming increasingly aware of how different things are becoming. Everyone seems to be moving on into the next phase of life and doing the adult thing and I’m still living in a constant state of limbo. I am not dating, getting engaged and married, buying a house, or having children. I see these as things which just aren’t possible.  My friends would say this isn’t the case at all, and they are probably right, but I can’t help but feel like the odd one out. I feel like cancer has robbed me of the chance to experience all of these things, but I also feel like I don’t meet the expectations of society. Why do we all feel like if we haven’t achieved certain goals by particular points in our life that we are unsuccessful? It’s crazy really. What is success?

Given my prognosis it’s unlikely I will grow old, I find thinking about the future a huge challenge. I don’t have a five year plan; I’ve got a life limiting illness, so when I join in conversations and think about long term forward planning I find it extremely difficult. Of course, that’s not anyone’s fault and I know I need to learn to deal with this but each time I seem to be moving forward something happens which shatters my world and I have to start picking up the pieces again. I just want to stay well for as long as possible. Thinking about myself as an old woman is the stuff dreams are made of!

I’m scared I will be in Pain

My biggest fear is being in pain. At the moment I’m suffering a little but this is nothing compared to how I’ve felt over the years, in particular before and after both my bowel operations. There have been times when I have been in an indescribable amount of pain for days on end. I wouldn’t wish that kind of suffering on my worst enemy, and I never want to feel that way again. I can only Imagine what child birth must feel like!

I’m scared for my family

Undoubtedly over the years my illness has had a huge impact on my family. My biggest fear is not what happens to me, it’s what happens to them when I’m gone.

I want see my younger siblings grow up, become adults and spread their wings. I want to be with them through every milestone, celebrate every success and learn from every failure, but I’m not sure I see myself there.

I worry who’s going to look after my family. I want to be there to comfort them and tell them everything will be OK. Who will be there for them in their darkest hours when they can’t cope anymore?  It won’t be me. I have experienced grief in recent years and the pain is still so real. What I wouldn’t give for more time with my wonderful Nan and Grandad. I hate the thought of my family going through that pain and not being able to comfort them. In some ways I get the easy way out, when my life ends I will be away from it all but my family won’t be, they have to live with that for the rest of their lives. Life is cruel.

I’m scared I will never fall in love

It’s hard to comprehend thinking about relationships when I feel as though I am standing at death’s door. I never let myself think about meeting a man and developing feelings of some sort. As my friends know well, I have huge barriers up when it come to matters of the heart, I’m not one to open up which is probably why I’ve been unsuccessful so far. Having not met anyone at university and then being diagnosed less than four months after graduating, my outlook on relationships and dating has completely altered. I think if a man paid me a compliment I wouldn’t know what to do!

If I were to meet a guy at what point am I meant to let me guard done and explain that I have stage 4 cancer? I’m guessing not at the start, it doesn’t exactly feel like the right kind of ice breaker to me. I am pretty sure they would run a mile! In many ways I am scared of being rejected but perhaps I’ve just not met the right man yet?

I have resigned myself to the fact that I will never be loved or fall in love with someone. I just don’t think I could do it, how can I act like I can offer someone a future when I feel I don’t have one? I will have regular treatment for the rest of my life and frankly I don’t think I could ever ask another person to take that on, and frankly I’m not sure I deserve it.