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.

Another Hospital Stay 

On Wednesday I’m due to go into hospital for another short stay, my first and hopefully only one of 2017. Just another day in the life of a stage 4 cancer patient! This time it’s not for Immunotherapy, but for an operation to remove the piece of metal that is protruding from my head and causing me pain. In my post Not Just In My Head I wrote about how my craniotomy scar has caused me a lot of pain over the years, and finally finding out why this was a few months ago. After a couple of consultations and different scans, it appears that the rogue piece of metal is a surgical staple or crainial fixer that was originally used to connect two pieces of bone in my skull back together after my brain tumour removal in 2010. Naturally there shouldn’t be anything poking out of my head! I could try to leave this as it is, however the area around the scar site swells up intermittently, so needs to be dealt with to stop causing me pain.

Last week I went to a pre-operative assessment appointment at the John Radcliffe Hospital in Oxford. During the visit I had various tests to make sure I am fit and well enough for surgery, including an ECG, MRSA swabs and blood tests. One of the nurses in the Nuerology outpatients clinic explained the whole procedure to me, and gave my a swag bag to take home with mouthwash, antiseptic cleanser and nasal ontiment in preparation for surgery. Being a bit of a pro and major operations I had used these before so wasn’t particularly phased by the procedures. The smell of the antiseptic cleanser reminds me of hospitals so I’m sure I will fit right in. Although the operation requires general anaesthetic it’s isn’t major surgery, such as having a tumour removed, it isn’t a life or death situation, but it’s certainly not common or without risks. I am also pretty sure it isn’t supposed to happen! In an odd way I’m looking forward to getting it over with so I can finally lean on both sides of my head again. 

Back in February I returned to the John Radcliffe hospital for perhaps only the second time since my major surgery at the end of 2010. During my consultation I saw the surgeon who performed my original operation, a man essentially credited for saving my life at the time. He explained the removing the fixer is a fairly straightforward procedure, which is always good to know, but that it wasn’t your every day occurrence. I’m not sure what has caused it, but these random things always seem to happen to me, so I’ve learnt not to be shocked. I always seem to be reminded that I am ‘not the norm’. The Surgeon asked how I had been since I last saw him, and remarked that I looked well, to which I responded ‘well, I am still alive so that a bonus’. A bonus indeed given the dire prognosis I had, expecting the surgery might buy me more time, a few months at best rather than years. 

Often my hospital stays are not planned, so at least this time I am able to pack and overnight bag. I’m really glad I will be seeing my old Surgeon for the operation, it makes me feel much calmer knowing that he knows my case and isn’t just going in there blind. More often that not I’ve found myself in an A&E hospital bed with no clean clothes or a phone charger, so planning ahead feels like a bonus. There is nothing worse than feeling unprepared and uninformed.

I keep reminding myself it’s just a short hospital stay and a few stitches so I am hoping I will feel fine by the weekend. Now I’m off to remove my nail varnish in preparation. 

Maintaining Mental Health

I’ve learnt a lot about the importance of exercise and it’s health benefits over the last few years. This has been most important in terms of my mental health.

I’ve dabbled at being a gym goer from time to time over the years, but it was only really about two and a half years ago, after my first bowel operation that I began going to yoga and pilates classes. Right now I am not really able to exercise in the same way I did 18 months ago, I feel much more fatigued on immunotherapy drug Pembrolizumab than I did when I was taking oral drug Vemurafenib. This is largely due to the frequency of the three week treatment cycles. I often feel too tired and lack the energy to exert myself, however I know that maintaining a good but gentle exercise routine will have huge benefits on my mental state and health as I move forward. In one of my previous posts, What Having Cancer Has Taught Me I wrote about the need to be kind to my body and not expect so much in the weeks post infusion.

Allowing myself to do some gentle exercise such as yoga, or go for a pre-work 5k jog along the Regent’s Canal gives me a short break from thinking about illness, and shows me that my body is capable of fighting back. Doing this is a great form of escapism, I’m trying so hard to concentrate of my breathing I don’t have time to think about anything else! I don’t ever finish an gym session or short jog and wish I hadn’t done it, it is common knowledge that exercise releases endorphins, so it makes me feel good that I am challenging myself.

I’ve been involved with young adult cancer charity Trekstock since Autumn last year. It is through this charity that I took part in RENEW,  a free 12 week exercise programme for young adults affected by cancer. Taking part in this gave me the opportunity to work with a top-level personal trainer and develop a tailor made exercise plan I could easily follow. Over the course of the 12 weeks I received complimentary gym membership to YMCA Club on Tottenham Court Road, and had frequent sessions with a wonderful trainer called Victoria. I decided to start the programme as I had been going to the gym regularly until my most recent bowel operation in May 2016. I had even taken part in a half marathon, but once I’d had the operation felt it I no longer had the motivation to exercise. After all, I’d be exercising for almost two years and I’d still become really unwell again, I felt deflated and wondered why I bothered in the first place. What was the point? It’s wasn’t going to cure me. 

Taking part in this programme has taught me how to work with my body, not against it. I know I can’t push it too hard, but I don’t always have to be breaking out in a sweat to make a difference. Mentally it has really helped me to keep a positive outlook. RENEW gave me the confidence to start exercising again, and I’ve since ran a 10k for Cancer Research UK. Being part of the programme was instrumental in my decision to take part in the run and have a new goal to aim for. I am pleased to say I am now back into a semi-regular gym and yoga class routine, often attending a great yoga studio East of Eden in East London. The key to this is that I don’t beat myself up if I don’t have time to go for a few days, its simply not worth it. My body needs rest as sleep as much as it does exercise. The 6am wake up calls just aren’t worth It when I crave sleep. 

Even though the routine is often slightly sporadic, keeping up exercise is very important to me, it allows me to have some control over how I feel, and being part of the Trekstock programme has definitely made me feel motivated. For me, It’s not about aesthetic goals at all, I read a quote on Instagram recently that said ‘Don’t miss out on 95% or your life just to weigh 5% less’, I couldn’t agree more. The important part is feeling good within myself,

Cancer has knocked my confidence a thousand times over, especially loosing my hair and my skin becoming overly sensitive. There was a time when this first started happening that I was constantly plagued by thoughts that people around me were looking at me, and they could tell I was unwell. It’s amazing how much a little exercise can help mental wellbeing and motivate me. 

 Having cancer is mentally draining to say the least, and the frequency of doctors appointments and hospital visits often add to my anxiety. However, I look at life with a ‘glass half full’ attitude, and the programme has really helped me continue this. I know a lot of people who aren’t so positive, which I do find frustrating at times. I could do nothing and laze around all day, and that’s fine occasionally, but it won’t be any good in the long term. I need to focus on the future and expect that I will be on this earth for a long time to come. If not then where does that leave me? I’ll only be negative and undoubtedly feel much worse. I’d encourage everyone to take on the ‘glass half ful attitude’, focus on the good in life rather than dwelling on what is missing.

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 got 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 that’s what counts.

Learning To Let It Go

All my friends know how organised I like to be, I love a plan, and don’t like going into situations without having a clear picture of what to expect. My work often revolves around waiting for people to get back to me before I can spring into action. Having as much information as humanly possible makes me feel like I have done my part, It’s a way of my being in control of a situation. Having cancer has meant that I am seriously lacking control and plans can change at the drop of a hat. I often joke that I am borderline OCD, however this means I can get stressed easily, and it feels as if I am going around in circles most of the time. The thought of disease spreading throughout my body, and of having no control over it makes me feel physically sick and anxious. When people ask how I am, I’ll say I’m ok 90% of the time, because it’s too difficult to articulate my true feelings over brunch or a quick text catch-up.

Cancer is lonely and even with incredible amounts of support from family and friends it is still a huge challenge. I don’t want to be the friend that nobody wants to hang out with because they are always feeling negative, so I have tried to keep some things to myself over the past few weeks, in the hope I will help myself and others around me. I want to enjoy time with friends focussed on other subjects, the ones that ordinary twenty-somethings talk about.

Dealing with such a bad diagnosis out of the blue has taught me so much about others, seeing both the positive and the negative. I have learnt from my initial Stage 4 diagnosis back in 2010 that some people will be there no matter what, they will show you what it means to be a true friend. The good eggs will laugh and cry with you, and be there for you even if it means that they have to listen to the same story 100 times (we all know I love a rant). They will let you rant and rave about life even if they have something really important to say. They will make you four different types of tea just to make sure you have the one you want, they will sponsor your 10k charity race, run it with you, or cheer you on in the cold at the finish line. They will travel from far and wide to see you even when you tell them not to bother, and remember when you have your hospital appointments, even when they are living in another time zone. I am forever in debt to these friends. I have no idea how I would react if I was on the flip side, so this is a shout out to my awesome friends both near and far. Thank you!

A couple of weeks ago I received results from my latest PET CT scan, and luckily everything is currently stable. I didn’t tell many people that I was having the scan, as I was trying not to talk about it so much in order to focus on other things. Yay for Pembrolizumab! For now I keep going on the same drug regime and I will have another scan in around three months time.

I am going to learn to let go of what I can’t control, and focus on all the positive aspects of my life. I am still here aren’t I? I’m still alive, and by all accounts doing really well. That Princess from Frozen has got nothing on me!

The Benefits Of Blogging

I’ve never been much of a writer, or a reader for that matter. At school I wasn’t particularly academic and had to work really hard for my good grades. Over the last few months I have found blogging has really helped me, not only is it a great to update people on what is happening without feeling like I have to repeat myself, but some of my friends have also said it’s helped to give them a better understanding of my situation. 

I guess often bloggers really enjoy writing, I wouldn’t say I’m a natural, but I am finding it easier as time goes on, and hope to keep the blog going as long as I have enough interesting things to say. Having said that, If I was asked to read my writing in front of an audience, I would hate it, but if I was asked to write my thoughts for the same group, then I think it wouldn’t be an issue. I’m finding it a great outlet for my thoughts and feelings. 

Writing is now very therapeutic, and enables me to think more clearly and process my feelings more easily. As I write I’ve been feeling less anxious because I’ve been getting things off my chest. Just seeing my thoughts and feelings written down somehow validates them. My last blog post, My Greatest Fears was the most difficult one to write so far. 

Through blogging I have accomplished something, I am surviving and I am letting people know that I’m still here. 
The down side of writing, for me, is I often wake up the night thinking about my next post. Occaionally I get good ideas and I probably should write them down immediately, but I struggle to sleep as it is, so I just try to remember and write them down when I get up. An uninterrupted night’s sleep is hard enough to come by lately.

Six years ago I wouldn’t have dreamed of creating something so public, it took me about 5 and a half years to even contemplate the idea of creating a blog about my life. I have found that there are young people like me going through similar situations, just reading other stories has made me feel less isolated, and other opportunities have come up as a result. I ran the 10k London Winter Run for Cancer Research UK a couple of weeks ago with family and friends, and through my blog had the opportunity the stand on the podium at the start of the race, sharing my story with others in a very public way.

Since making my blog public last October it’s been viewed over 10,000 times! My writing has been read all over the world in more countries than I’ve managed to visit in my life. People have read my story in countries such as Albania, Iceland, Taiwan, Indian, Columbia and the Carribean. The power of the internet is incredible! Thank you to all those who’ve read and shared my story so far, I really appreciate it. 

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 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 know 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, 0r 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 particulate 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.

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 this, 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 hair with a wig and cover up my portacath and scars, I look like any ordinary 20-something. I guess 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 know 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. Some of my friends 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 repeating myself too much!

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 and that I was being dramatic. But 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.

Not Just In My Head

I am currently waiting for a referral to be seen by the Neurology team in Leicester. After I had my brain tumour removed in November 2010 a small lump formed on my head after my craniotomy. Over the years the small pea size lump has given me a fair bit of pain, to the point where I haven’t been able to lean on one side of my head for fear of aggravating it. Sometimes it would weep fluid and become enlarged, which I put down to putting too much pressure on it when I slept.

I expressed my concerns to my Oncologist about a year after my operation and was then sent for an ultrasound on the area. I was mortified when the Sonographer suggested I lift up my t-shirt in order to begin the ultrasound. I guess he assumed I was pregnant, so told him that no, I wasn’t and I was there because of a small but very painful lump on my head post tumour removal. Luckily, he was apologetic and nothing sinister showed up on the scan. I let it go and decided I just had to deal with it and accept it was just an irritating reminder of an awful time but a small price to pay for life saving surgery.

Over the years I’ve mentioned the lump numerous times to friends and family, not quite sure why it still caused me pain so long after my operation. It turns out that I had a reason to moan after all!

I noticed recently that the lump on my head has appeared to have disspeared. At first I thought this was great news, however realised there was a scab forming in its place. I tried to pick it off but it didn’t work, and when I asked my mum to take a look she commented it liked like metal coming out of my head, perhaps a staple of some sort protruding from the area where the lump had been.

I contacted my Oncology team, baffled as to how and why this could happen. Perhaps the lump was some sort of infection covering the metal the whole time?  Who knows! I’m hoping it can be removed as I keep catching it when I wash my hair, and getting rid of it would stop the sensitivity in the area. Better out than in as they say! I’ve got enough scars and war wounds as reminders of the past 11 years, I don’t need another one to add to my collection. It just goes to show that both the physical and mental scars of this part of my life will always be with me in some form. 

It’s sounds strange but it’s good to know it’s not just in my head. I always suspected something wasn’t right, I know my body and often joke with friends that I’m always right about these kind of things. I knew before I had my most recent bowel operation that there was no way I could feel so bad without something being very wrong.

I am glad I finally know the cause of my pain, and don’t have to keep dismissing it as ‘just one of those things’. Hopefully the Neurology team will have some answers for me when I see them. Nothing is ever simple when I am involved.

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. 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.