Concessions For Disabled People

After my most recent blog post Something To Look Forward To, It has come to my attention that many people may not know of some of the concessions or discounts they might be entitled to if they are in receipt of disability benefits, or have had, or are currently undergoing cancer treatment.  Something To Look Forward To are a great small charity who offer free event tickets, beauty treatments etc to those experiencing cancer, however there are also many other opportunities those who are registered disabled can make use of.

Although the free NHS prescriptions and a Blue Badge are extremely useful and practical, having cancer is really expensive which means some people might miss out on doing things they enjoy. With this in mind I thought I’d compile a list off potential discounts and money saving options for travel and recreational activities which might be helpful to others. If anyone knows of discounts or offers I’ve not covered, do feel free to let me know and I will add them to my list, and most likely take advantage myself.

Disabled Persons Railcard

A Disabled Persons Railcard provides those who have a disability that makes travelling by train difficult 1/3 off both standard and first class anytime, off-peak and advance fares. This also applies to one companion travelling with them at the same time. This applies to those with a visual impairment, a hearing impairment, epilepsy or those who are in receipt of a disability-related benefit. It is one of the first discounts I was made aware of when I first started to receive Disability Living Allowance (now PIP) back in 2010.

CEA Card

The CEA Card is a national card scheme developed for UK cinemas which enables a disabled cinema guest to receive a complimentary ticket for someone to go with them.  I’ve used this card in various cinemas chains up and down the country including Cineworld, Empire and Odeon; and it is really handy, especially when cinema tickets can be over £10 each and splitting the cost makes it much more affordable, particularly for those who cannot go alone without any assistance. Those who receive benefits such as Disability Living Allowance (DLA) or Personal Independence Payment (PIP) are eligible, as well as various other benefits listed on the website for the CEA Card. Cardholders must be 8 years of age or older. The card costs £6 for the year so it’s worth it, even if it is only used twice a year.

Access For All Admit One Card

The National Trust admits a companion, or carer, of a disabled visitor free of charge, with the normal membership, or admission fee, applying to the disabled visitor. The  Access for all Admit One Card is free of charge and can be issued by emailing National Trust directly and sending proof of being in receipt of a disability-related benefit, such as Personal Independence Payment (PIP). This card is made out in the name of the disabled person, not the companion, so there is not a restriction to taking the same person on each visit, which is really useful. I’ve got one of these cards but am yet to use it.

Gym  Membership Discount

Many gyms across the country offer discounts for disabled people, in particular gyms run by councils, depending on where in the UK you live. A example of a chain gym that offers discount is Better Gym, know as the Better Inclusive Membership. This membership gives disabled people full, anytime access to facilities at over 200 leisure centres, including use of gyms, pools and fitness classes. The costs for this is very reasonable, at just £19.95 per month with no joining fee and no minimum contract. Like the other offers, I had to show proof of being in receipt of disability benefits when applying for this.

Concert / Theatre Ticket Concessions

I love going to the theatre and gigs, and was pleased to find out many venues or theatre companies operate an accessible ticket scheme for those in need. Being in receipt of Personal Independence Payment (PIP) means I’ve been able to take advantage of some of these offers which make a night out at the theatre practical and enjoyable. Ambassadors Theatre Group own many theatres in the West End and across the country and operate an ATG Access Membership Scheme for people needing assistance. I recently booked accessible tickets to see a show in the West End and received great service, someone even asked if we needed assistance with our interval order which I thought was great, especially for those who may be using a wheelchair. The National Theatre also operate a National Theatre Access List offering concession tickets for disabled people and carers, which means those eligible can get a pair of tickets to a show for just £32!

In additional to Something To Look Forward To there are also organisations such as Willow Foundation who provide Special Days for seriously ill 16 to 40 year olds. I had a special day organised by them in 2011 which included a trip to London, tickets to see a musical and a lovely meal out with some of my family. I would definitely recommend it for those who may qualify,

Something To Look Forward To 

Since my last blog post Being Dealt A Bad Hand I’ve tried to focus more on all the good things I have in my life, and changing the things I can control. I’m going to do my best to try not to focus on those I can’t change. This can be very challenging week on week, but I feel a little more postive this week. It’s good for me to have something to look forward to post treatment, such as meeting with a friend I’ve not seen for a while, or planningfun activities around Christmas time. 

By chance, I came across a charity called Something To Look Forward To via social media a few weeks ago. Something To Look Forward To is a charity website for people with cancer and their families, which allows them to access a variety of gifts donated by other people and companies. This can be anything from restaurant meals, hotel stays, hair and beauty treatments, or tickets for various gig, events and attractions across the UK.

I filled out the forms and was lucky enough to recieve a voucher for a meal at my local pizza restaurant, and am looking forward to using it,l; I already know what I want to order. It’s the small things that sometimes make a big difference, particularly when people might be struggling with the mental and physical effects of cancer. I’d recommend anyone going through treatment to check out the website, you never know what you might find. 

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. Part time working hours means I can’t save any money. 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 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. 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 phychologist 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.

Tired Of Being Tired

I have now been living with cancer for 12 years, and today marks my 7 year stage 4 diagnosis. At the time, being alive and well at the age of 30 seemed impossible. There are so many conflicting emotions around particular dates such as this one, I am sad I feel I have missed out on so much, but am hoping there is much more to look forward to in the not to distant future. If I can make 7 years as a stage 4 patient who is to say a couldn’t make another 7! I literally owe my life to those developing new treatments and the healthcare professionals that have chosen cancer as their specialist subject.

The issue that has been haunting me most of late is that for me treatment doesn’t have an end point, and I struggle with this often. I’m tired of it. This is not a temporary situation which I can learn to power through, every aspect of my life until my dying day is governed by this illness. Having immunotherapy every three weeks has become the norm. I often grieve for the life I could have had without cancer, but It hasn’t broken me yet. I guess I have probably learnt a lot about myself in this time. Sometimes (not always) I feel I am now a stronger person for what being ill has taught me.

Coming to terms with the physical changes cancer has had on my body has been an extremely challenging task, not to mention the impact on my mental health. Hospital visits make me particularly emotional and sometimes I burst into tears so quickly, and then my mindset will be negative for days on end. It’s small things such as having to cover up my portacath, or not wear something too revealing as I don’t want to exposes too much of my sensitive skin to the elements. Lucky, winter is slowly setting in so I’ll fit right in.

I live life in a different way now, the pace is slower than I would like, but I cannot change it. Sometimes I get on ok, other times I want to scream at anyone who claims to be tired. TIRED? You don’t know the meaning of the word. Exhaustion comes in waves, and when it does hit seems to effect me in an instant. And I am one of the lucky ones. It is as if somebody clicks their fingers and my energy levels plummet straight away. As soon as the drugs are pumped into my blood stream I become a total zombie. My legs feel like I’ve been hiking up mountains for days on end, I’m going to end up needing one of those fold out camping stools for when I just can’t walk any further.

My thoughts don’t seem to make sense anymore, like a ‘glazed over’ feeling of not quite being in the room. I had no idea what exhaustion was really like until I had chemotherapy and immunotherapy; even the thought of being active exhausts me. I just want to be able to click my fingers and be in bed with a large pizza. That’s one super power I would love to have.

There are so many ups and downs during each cycle, as soon as you get over one intense period of treatment its time to begin the next cycle all over again. Nothing ever seems straight forward, after some appointments I’ll feel sick, others will give me a bad stomach or a rash. All very bearable of course, but aside from the fatigue there doesn’t seem to be standard reaction each time I have treatment. This is typical of me, as I’ve been told many times I am ‘not the norm’.

Over the past few days I’ve know I’m  in a bad way as I’ve been caught at the barriers at London Underground stations. So embarrassing, but funny when you think about it. I tap my Oyster card and the barriers open, yet somehow it takes my brain a while to figure out I should be walking through. My mind and body are slower to react, and I end up being one of those people who get their bags caught because they weren’t paying enough attention, much to the amusement of others.

Suffering from this kind of fatigue and trying to resemble normality is exhausting. I’m tired of being tired. It’s taken me ages to finish writing this blog post as I just haven’t been able to find the energy. I am not even sure I remember what it’s like to feel awake and energetic.

I’m powering through this week, but by Monday I should feel vaguely normal again, regular levels of tiredness as opposed to completely wiped out. They often say normal is boring, but I’d love to feel normal and part of the In crowd again.

I’m a morning person so I am off out for a jog / walk – it’s the last thing I want to do, but I’m hoping the fresh air will do me some good and somehow help to replenish my energy levels. That’s if my legs can do what my brain wants them to!

One Year On

I have now been sharing my story via my blog for exactly one year! How time flies! I didn’t think I’d have that much to say about my life. 

It has also been exactly 12 years since I was initially diagnosed with malignant melanoma, the most deadly form of skin cancer via a mole on my neck. I have now been living as a stage 4 patient for almost 7 years, which seems like a lifetime. Having cancer is a life sentence, it is a huge part of my life that feels like it will never get any easier. I am pretty sure the odds would suggest I should have died years ago, but they have been in my favour so far, even though it hasn’t seemed like it at times.

If feels like every month mark some sort of cancer anniversary, from a diagnosis, a major operation or some sort of key hospital visit. There are so many it’s hard to keep track, and in the process I’ve forgotten about the good, and most importantly non illness related milestones in the process. Graduating from a university, getting a new job and moving to London are all on the other list of things I should remember and am proud of, but I’m more likely to forget as time goes on. 

Initally, many people I know suggested that I should start a blog as it might be therapeutic, and help me to be less angry and upset about my circumstances. I am definatley still very angry and upset, however I do think it has helped me. I think it’s been good for others to have a better understanding of what it’s like to live with a terminal condition, and I don’t feel like I’m repeating myself as much, which is a great thing for my sanity. It’s hard enough trying to process things myself without having to go over it multiple times when debriefing with others.

My recent trip to the Edinburgh fringe was brilliant, I saw some great one man / woman plays and felt inspired to write something about my life. I’m not sure if I actually would or not, but the blog would make for great material. There have been so many ups and downs and ‘you couldn’t make that up’ scenarios over the past 12 years it might make for a good one woman comedy. It seems unreal that all these things have happened to me, so maybe there is some leverage in my story. I do feel the blog is perhaps enough for now, its a great outlet but it’s nice to have hobbies / interests that don’t revolved around me being unwell. I’d like to think I’m an interesting person without the cancer fanfare, but watch this space for any updates on a new hobby as an aspiring playwright. 

The Fear Of Missing Out 

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

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

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

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

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

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

#FOMO

What Could Have Been

Since writing my last blog post, Life Through A Lens, I had a week long break from social media, and I feel so much better for it. Now I am focussing on my summer rather than what other people are doing. In a few days I will be heading up to Edinburgh to enjoy the fringe festival. I went last year for the first time and had a great weekend.  Despite the fact that I am a Drama graduate, I had never been before, so when the chance came to go again I couldn’t turn it down. I have been pretty easy going about the trip and have left it down to others to organise, so am looking forward to sampling what the festival has to offer for 2017. I love to travel and the fringe combines a lot of my favourite things; travelling, theatre, sightseeing and eating out.

My first ever experience of the city of Edinburgh was during my failed attempt at starting university back in 2005, which I wrote about in my original blog post 11 Years. Since that disastrous week I went back in 2008 with a friend from University, and then again in 2016. I love the city, however being there last year struck a chord with me.  If It wasn’t for finding out that I had melanoma, I would have studied there for three years, and who knows where that path may have led to? It is a question I ask myself a lot, wondering what could have been.

Last summer, on my last day In the city I became very upset and tearful about my situation as recollections of what happened came flooding back to me. At 18, I felt that I had no choice but to have a gap year, since I only found out about my melanoma the day before I flew to Scotland, and I was nowhere near ready to be so far from home with a stage 1 cancer diagnosis hanging over me. I was lucky that one of my sister’s best friends from school had already been there a year when I showed up to study.  She came to see me, finding me confused and upset.  I clearly remember my lightbulb moment, I told her that I wanted to be at home with my family, without bursting into tears. Knowing it was the right choice, I returned to Northamptonshire after just six days, and eventually began the quest for finding a new job. I did not want to return to my previous job working at the cinema, after all people would be sure to ask me questions about the scar on my neck, and why I wasn’t in Scotland. As I had only been working there a very short time I did not feel tied to the job, or have a desperate need to return. I think I was only there for a couple of months.

I feel as though cancer has ruled my life since that initial diagnosis, and subsequently I have chosen paths in life that I wouldn’t have chosen had I been well. I get very upset and sad to think cancer will now always be a part of my day to day existence. It rules my life, rather than the other way around. When last in Edinburgh I felt angry that cancer dictated what happened to me as a young adult, and that impact will never go away. I feel as if it has taken away a lot of my freedom, and limited my choices in life: from where I live (I wouldn’t be able to live anywhere as far away as Scotland these days), to the type of job I have, and the prospects that it offers. Having a part time job means saving money is a non-existent luxury, so I feel limited. Perhaps this wouldn’t be the case if I were able to work more? Who knows?

I can’t help but think about what could have been if I’d been able to stay in Edinburgh to complete my degree. Would I have lived there afterwards? Possibly I may have performed at the fringe myself during my time there. One thing is for sure, it always seems a lot colder up there, so if anything, I guess, that is a bonus!

People often say everything happens for a reason, but I fail to see why this has happened to me. I will never understand why. I hope this year I will enjoy the festival and try not to dwell over lost opportunities and memories I didn’t get the chance to create.

Lastly, I wanted to say a huge thank you to those wonderful friends who contributed towards the  2017 fringe fund for me. My lovely friends set up a collection for my 30th birthday so that I could ‘go big’ at the fringe and it has paid for my all my tickets and spending money, I would have struggled without the funds people so generously donated. Absolutely amazing!

Life Through A Lens 

Recently I’ve been witness to how much of our lives are governed by social media, from Instagram, Facebook and Twitter to Snapchat and Instagram stories. More often we are living our lives through a lens and my guess is we are probabaly all guilty of oversharing at times, myself included. Sometimes I use apps like Instagram out of habit and I don’t even think about it, I’m not even going on there to look at anything specific.

I frequently enjoy sharing elements of my life online alongside my blog, and in doing so it’s helped me feel less like the odd one out, I’m not the only one living the lonely cancer life. Writing my blog and creating social media platforms has opened up a lot of new opportunities for me, from my television debut to writing guest blogs for Huffington Post UK and The Lewis Foundation,  as well as finding out about the work of other charities I wouldn’t have heard of before. I’ve also been in touch with other melanoma patients who I wouldn’t have connected with otherwise. I do however feel a temporary break is much needed.

The use social media seems like it’s at an all time high, gone are the days of hotmail email accounts, MySpace and MSN messenger,  being part of the millennial tribe means that everyone is quick to share photos and videos of their lives at a click of a button. I’m also guilty of this, I mean who wants the FOMO?! (aka the fear of missing out for those that are less social media savvy). When I was diagnosed with a brain tumour in 2010 I took myself off Facebook for almost a year, and  didn’t have any problems staying in touch with friends, so it might be nice to go back to basics for a few days. The more I think about it the more I am glad to have grown up on the cusp of the social media revolution. 

It would seem that doing multiple activities in a day is commonplace when I look over Instagram profiles. It could be that it is partly the profiles I chose to follow, but I don’t want to be made to feel guilty that I’ve eaten copious amounts of maltesers, or that haven’t made every meal I’ve eaten during the week from scratch because I’ve had treatment that week. Even on a regular week I wouldn’t be cooking every night. I feel like what I see on online is often unrealistic, unless being a blogger is your full time job it just doesn’t work like that. Social media can make me feel like I’m doing something wrong, and the pressure to be part of the crowd and be constantly active can feel too much. I don’t want to be made to feel like an outsider if I have had a few duvet days and not bothered going to the gym. This pressure comes in waves and I’m sure it’s something which like others I will continue to experience now and again, but I would like to create some sort of distance. My lifestyle is not picture perfect by any means, but I still have a really good life. Even if my life isn’t going to be a long one I know that I’m fortunate to be well at the moment, perhaps I should focus on that whilst on my way to my next day trip destination rather than mindlessly scrolling through Twitter and not paying any particular attention to what is on the screen.

Over the past week or so I’ve spent the best part a whole day in bed watching trash tv, and another full day receiving treatment at hospital in the chemotherapy suite, but who really wants to know I’m doing absolutely nothing? Social media tends to focus on the highlights, but not every day is the same. I chose not to show images of me in hospital for a number of reasons; it makes me feel uncomfortable and I don’t want a lasting image to remember it by, It won’t be something I forget easily. My immunotherapy is ongoing therefore I won’t be posting a picture of myself holding a sign declaring my final treatment has been completed, or one declaring how many years I have been in remission. I’m happy for those that do experience that, it must be an incredible feeling. I can’t help but feel sad when I look at these images, because it will never be me.

Having a break doesn’t mean that I am quitting anything permamently, just a temporary break to help refocus and allow me to take back some control of my life and think about other positives I have going on. I hope that a break will help me get things in order, such as my sleep pattern and overall productivity. I can certainly procrastinate if I want to, so I’m going to take a step back from posting online for a week and see how I feel afterwards. Wish me luck!

A Never Ending Cycle

I was fortunate enough to get stable scan results a couple of weeks ago following my most recent PET CT scan. It goes without saying that this is of course fantastic news, but I’ve not been feeling on top form for a little while. Having good scan results doesn’t automatically take away any of the pain or treatment side effects I’ve been experiencing, If anything, it probabaly feels worse.

I’ve had an annoying cold for about nine weeks, which has been really frustrating, but I’m hoping I am now rid of it thanks to a course of antibiotics.

My emotions have been very up and down, this weekend marks the start of a very busy summer, including hen do’s, weddings, short trips away and various other birthday celebrations. I love hanging out with my friends, however sometimes it can feel overwhelming. On the surface it seems as though everyone around me has a perfect and exciting life with a huge future ahead of them, and it’s all around me at the moment. It’s a horrible situation as I feel like I don’t have that, we’re not all running the same race, and I feel like life has let me down.

I’ve been feeling low and generally unwell which is difficult. On the surface it seems as though everyone around me is on cloud nine and I’m gloomy all the time, but I can’t help it. I’m feeling a bit sorry for myself at the moment, so need to shut myself away, but there is so much going on I haven’t had any time.

Everyone around me seems to have their future mapped out for them, and in total contrast I have serious lack of direction in my life. I am failing at living a grown up life. The only thing that’s certain for the future as it stands is that my treatment will continue in order to keep me alive. Thinking about that long term gets me down. If it stops then that signals the end, and I’m scared about what lies ahead. Yes, my scan results were good but I still have a relentless cycle of treatment every three weeks. In six months it could be a very different story, it is something I panic about when I’m lying in bed late at night and I end up having broken sleep and headaches. The ‘What If’ scenarios are very scary, they aren’t actually irrational thoughts which is the most difficult part. I have so many questions that nobody has the answer too. I am due to go abroad on two major holidays next summer but every time I get excited another part of me worries more and more and all the changes that could happen over the next 12 months. I am scared to think about plans unless there are about a month in advance because I don’t want to let people down.

I’m petrified when I think of the future, but I know it’ll pass. I feel like I just get used that things and then in a flash another theee months fly by and I will be worrying about my next scan.

Someone once suggested to me that I have a treat every three weeks when I go for Immunotherapy so I have something positive to focus on rather than worrying about having the treatment. It could be something like getting my nails done or going to the theatre, or even just buying myself something nice. I’d most likely do some of the activities anyway, but could be a good way of shifting my focus to something more positive.

On a brighter note I had hair extensions fitted last weeks and they look amazing, just like my own hair used to look. Such an amazing feeling not having to wear a wig.