Finding My Focus

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

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

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

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

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

New Year Challenges

After deciding against another running challenge in 2018, my lovely school friend Emilie has taken one on and is doing the Brighton Marathon to raise funds for Macmillan in April. I’m proud of one of my oldest friend for taking on this marathon challenge  (pun intended) and I’ll be going to cheer her on during the race. You can find out Em’s story here.

Macmillan have been a huge source of support for me, from my Skin Cancer specialist nurse to various online resources and assistance with various different application forms. I’m really appreciate Emilie’s dedication to a cause that’s so close to home. Later in the year I am going abroad for her wedding to be a bridesmaid so it’s set to be an epic 2018.

I’ve decided take on a different challenge in the new year and I am hoping to do the Lake District 5 Peak Challenge with Trekstock later in the year. I’ve never been to the Lake District before, so I thought it would be a great way of doing something new whilst also raising awareness for young people like me experiencing cancer. Over the past 15 months I’ve received a lot of support from the small London based team which has been invaluable. The challenge runs over one day. The climb goes up to over 3,000 feet, covering approximately 14 miles. I need to work out some sort of training that might help. Any one up for a walk around Hyde Park with a large backpack?

I am seeing in the new year by relaxing at home, which seems like a nice chilled out end to 2017. I am keeping everything crossed that my cancer will continue to be stable in 2018 as I have new opportunities and adventures in the pipe line!

Festive Feelings 2.0

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

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

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

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

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

Wishing everyone a Merry Christmas and a Happy New year!

Thoughts On Food And Cancer

Food and cancer has been a topic I’ve wanted to write about for a while, there are so many different opinions floating around about diet and cancer it can be difficult to distinguish key facts.

The key advice I have received about diet and exercise whilst having treatment is to do what works for me individually. Just because some things work for one group of people doesn’t automatically mean they will work for the majority of the population. Each week there are multiple headlines suggesting what we put in our bodies can either help cause or prevent cancer and It’s confusing to say the least.

Since I had my first bowel tumour removed in 2014 I have been conscious to eat more fruit and vegetables and also began going to the gym. There is no set routine so to speak, and some weeks I’m far better than others. I figure walking is as good as anything most of the time, when I feel able. If you’d seen any of my instagram posts you’ll see I also go to the occasional yoga or pilates class. I enjoy it, but it can often be pretty expensive.

I went through a prolonged phase of having home made juices, but I think that phase has passed, at the moment my sleep is far more important than getting up early to squeeze fresh oranges. I don’t want to feel guilty if I eat cake or sweet snacks, it is ludicrous and life is too short! I’m more active now than I have been in previous years, which is great. However, in the winter time I really have to push myself to get up and go. I know its good for my overall wellbeing, but so are rest and sleep. If only there were more hours in the day for extra sleep sessions.

One thing I have discovered is a love of cooking. I used to be all about the home baked cakes, but I’ve extended my repertoire into the dinner field over the past few years. I now often enjoy spending time in the kitchen, or thinking about what meals to make for the week ahead. As it’s winter, I am really enjoying making soups and the one pan curries and stews (I am not a fan of washing up, so one pan meals are great!). Books from instagrammers like Deliciously Ella have allowed me to enjoy cooking simple meals from scratch and I no longer feel like it’s a chore. I got Nicola Graimes book The Part-Time Vegetarian for Christmas last year and it’s proved a real hit.

Ultimately I will do anything if it helps me, but I don’t want to be made to feel like any of this is my fault, or that I somehow got cancer because of lifestyle choices. I’d love to think that doing these things is the ultimate cancer fixer, and my melanoma will be cured if introduce some sort of strict regime, however sadly It won’t. I find it upsetting for people to suggest that I might have done something which would have caused this horrific disease, perhaps I’m feeling a little over sensitive but I’m sure others would say the same. I would urge people to think about their choice of words when discussing this topic. I find social media frustrating because people seem to assume that one particular lifestyle or way of eating should be the same for everyone. We are all different, it is what makes us unique.

Over the past year I have had many conversation with people about the latest food revolutions, but watching a couple of documentary’s about fad diets doesn’t make anyone an expert. Remember when the atkins diet was huge? Some of the most healthy people I know have experienced cancer, it doesn’t discriminate. Everyone from triathlon winners and marathon runners can get cancer, It can happen to anyone at any time, regardless of lifestyle choices.

Eating well is by no means a replacement to chemotherapy and Immunotherapy treatments. I believe in doing these things alongside my treatment regime helps me feel well, support my body and in turn give me more energy to fight this illness, but isn’t a cure. I touched on this in one of my older blog posts, What Having Cancer Has Taught Me.

I know that the reason I am alive today is because I have been on the receiving end of various new cancer treatments, and I’ve had tumours in places where they could be surgically removed. I have no real way of knowing if eating more vegetables has made any difference to how I’ve responded to Pembrolizumab so far. Whilst taking oral targeted therapy drug Vemurafenib I was also training for a half marathon and I really raised the game on my food intake and exercise regime (That half marathon wasn’t going to run itself!) but I still had recurrence of disease and a second bowel tumour removal operation in May 2016. It might have been that I would have responded in exactly the same way, whether or not I’d made conscious changes around what I ate or drank, or what exercise I did. Who knows!

I eat a balanced diet most of the time and I also like a few treats. With a stage 4 diagnosis, it’s really not going to make the situation any better by worrying if I’ve somehow contributed to being unwell.

If it turns out I was wrong, do feel free to say I ate too many cakes in my eulogy.

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.

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! 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. 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 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!