The Perks Of Pembrolizumab

Last week it was reported that two scientists behind groundbreaking Immunotherapy developments had won the annual Nobel Prize for Physiology or Medicine for their work on Immunotherapy.

This is big (and incredible) news within the cancer world! It got me thinking about all the positives which come alongside taking a newer, cleaner drug like Pembrolizumab. I’m continuing on treatment indefinitely which is hard to get my head around, but It’s safe to say I wouldn’t be alive without it! I just have to suck it up and keep on going.

Professor James Allison and Professor Tasuku Honjo discovered how to fight cancer using the body’s own immunise system, which eventually led to treatments for advance melanoma and has transformed the way it’s treated. My current Immunotherapy drug Pembrolizumab is now also being used to treat other cancers such as advanced lung cancer and Hodgkins Lymphoma. The drugs now offers hope to patients like me with previously untreatable cancer! Believe it or not the duos work began in the 1990s and is now starting to pay dividends!

You can read more about the award and the developments in the news section of the Cancer Research UK website, which also includes a few quotes from yours truly! Thanks CRUK!

I’m so happy that research in the area has been funded so far, but my case is one of many, some not as successful! Hopefully research will continue so scientists can fully understand why drugs work for some people and not others and how it can developed to become even more successful.

Ipilimumab (aka Yervoy), which I took a few years ago was one of the first drugs developed using the scientists discovery, with Pembrolizumab and Nivolumab following closely behind.

I started thinking about all the perks of taking this drug compared to some of my previous treatments. Going through endless cycles treatment is like crossing a battlefield every day. I need to keep thinking about the positive aspects to help keep a positive mindset, and it might help someone else too!

My hair and eyebrows have grown back since my treatment change, for me this is a huge success! I ask look well (partly thanks to the hair and eyebrows!) therefore not like your typical cancer patient; this does wonders for my mental health, but I know often people don’t always appreciate how unwell I am if they can’t see the evidence for themselves.

The side effects for me have been a lot less than on previous systemic treatments, including Vemurafenib which caused me many more problems such as frequent vomiting, skin rashes, bad stomach, headaches and joint pains to name a few. I will sometimes still experience these side effects, but to a much lesser degree than previously. My current main side effects are fatigue and vitiligo, and although these get me down frequently, (see my previous post Tired of Being Tired) I know I’ve come really far over the past two and a half years.

The infusion of the chemo itself is only 30 minutes, I know some people end up hooked up to machines for the best part of a working day receiving other types of chemotherapy. On a really really good day I might only be physically hooked up to a drip stand for a hour or so. Sure, that hour feels like an eternity, and there’s an awful lot of waiting around in between appointments etc, but it could be much worse. Today I had a really long day at the hospital, but I have to remind myself it’s all for the greater good!

Some weeks, when not seeing my consultant or one of my oncology team I only have to visit my hospital for the treatment in the afternoon, making the whole experience far less pain staking!

I’ve spent much less time as an inpatient on a hospital ward that with previous treatments. Three years ago it felt like I was constantly visiting my local A&E due to various side effects and having numerous blood transfusions, but so far so good with Pembrolizumab.

I hope that in the future this drug will be developed into a tablet, meaning a lot less visits to hospital for patients like me, considering how advanced chemotherapy treatments are becoming I would it’s not too much of a distant dream. Until then I just have to grit my teeth and keep going.

The Results Are In

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

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

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

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

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

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

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

Here’s to LIVING!

I Should Have Been Dead By Now

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

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

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

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

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

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

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

The Rough And The Smooth

I used to find it so clichè when people described having cancer as being on a rollercoaster, but at the moment, it feels like one of the best ways to easily articulate daily life living with stage 4 melanoma.

In my previous post I mentioned that amazing news that my last PET CT scan results were stable. Despite this, I have felt very up and down over the past three weeks. Sometimes I find living with the side effects of cancer treatment can be harder that having the treatment itself.

Sadly the results don’t mean all my side effects from taking Pembrolizumab disappear over night, it’s probably quite the opposite as somehow I feel more aware of my body than ever before. Living with cancer has so many ups and downs, it’s mentally challenging and know from experience that the good news can change to bad very quickly.

Last week I dreamt I had five brain tumours, not one, but five! Negative thoughts like this will always haunt me, and dark clouds will follow me around wherever I go. I worry so much, particularly about getting a brain tumour. I had one removed when I was initially diagnosed with stage 4 cancer in 2010 so for me this isn’t an irrational thought.

Over the past few weeks I have been attending regular CBT sessions in order to help me manage my anxiety surrounding my diagnosis and the depression that comes with it. It is hard to accept that having been labelled as terminally ill it essentially means I am dying. It might not be today, or tomorrow, or in a month or perhaps even a year, but one day cancer will get the better of me. For all those people who suggest I could get hit by bus tomorrow and die instantly so I shouldn’t worry; trust me it is not that same thing. At the moment I’m taking each day as it comes, taking the rough with the smooth so to speak. When I’m in a negative spiral it can often take a little longer to ride out, even though I try to be a positive as possible.

According to the NHS website, Cognitive behavioural therapy (CBT) is a type of talking therapy that can help you manage your problems by changing the way you think and behave.

It’s most commonly used to treat depression and anxiety, and is based on the idea that negative thoughts and feelings can trap a person in a vicious cycle. The therapy aims to help people deal with problems that feel overwhelming in a more positive way, by breaking them down into smaller parts. Essentially learning how to change negative patterns and become more positive, looking for practical ways to improve a persons state of mind.

Through my experience so far I think CBT has been beneficial, however as I write this I am mid hospital appointment, having just broken down in tears. A hospital is the last place I’d ever want to be, but I don’t have a choice about coming to have treatment. Sometimes it’s all too much, even if the appointments are running to time. It’s not one particular thing that makes me emotional, it’s the whole treatment process. A classic example of a day which had been pretty unstable; I feel like I’ve experienced so many emotions in one afternoon. Hopefully tomorrow will be a better day and the CBT will continue to help me move forward living with cancer.

This July marks two years on current wonder drug Pembrolizumab and 7.5 years of living with stage 4 melanoma. Any tips on helping manage emotions would be much appreciated.

The Struggle Is Real

The never ending struggle of living with stage 4 cancer is very real, and sometimes it appears that I am coping really well, even when I am not. Recently I have had to accept that I need a bit of help as I haven’t been doing well over the past few months. Late last year I felt I was in a dark place and was prescribed antidepressants by my GP.

Being surrounded by positivity and wonderful people helps a lot, but it’s ultimately not a solution. Cancer is lonely and isolating, which means I struggle with my diagnosis daily. As I’ve mentioned in previous blog posts I frequently feel very lonely and I am not ashamed to say I cry about my situation often. I have points where my judgment is clouded and I struggle to see the positives, as they hugely outweighed by the negatives. Who wants to wake up in the morning thinking about their impending death? Melanoma is a death sentence which I cannot change.

No longer having the typical visual side effects of cancer and holding down a job may sometimes mean people don’t realise how much I am struggling to get by. I think I often make it look easy, I look well but I don’t feel well. This is by far the hardest thing I have gone through, and will ever go through during my lifetime. Unless you’re in my shoes it’s hard to truly relate. Of course, I do have good days where I feel like I’m powering through, and they feel great, but increasingly they are few and far between.

It’s my priority to feel well in myself, but sometimes my lack of control means that isn’t always possible. I try to try forget my woes, even if it’s just for five minutes in a day. I have a new job, and am starting to focus on my new challenge, the Lake District 5 Peak Challenge with Trekstock in April. I have been making the most of being in London and having down time, rather than trying to do too much, which I wrote about in my last blog post Finding My Focus. I have made an effort to go to my favourite local places, go to the cinema, or listen to my current favourite music (The Greatest Showman and Hamilton soundtracks are amazing!).

There are times in the past when I could have taken antidepressants, such as when I had surgery to remove my brain tumour eight years ago, but I just focussed on getting through each hospital appointment. These tablets ultimately won’t make a difference in terms of how Melanoma affects me, but they have started to help me feel less like bursting into tears every five minutes. The injustice of the world upsets me often, and it all comes back to my lack of control or choices I have in my life. This is one of the reasons I choose to raise money for charity when I can; often unless something touches someone’s life personally they may not think about trying to raise funds, but I’ve seen first hand gaps in the support system for patients, and the astronomical costs of life extending cancer drugs on the NHS.

When you look at television adverts or posters, cancer patients are often seen in a positive light, overcoming illness and defying expectations. I guess this is meant to reassure us that cancer can be beaten by everyone, but it is often hard to comprehend the true reality. So far, taking antidepressants has made a significant shift in how I feel; I still struggle every day but the sadness and frustration feels less overwhelming. It seems there can be a stigma surrounding taking antidepressants, but It is clear that I need a little help at the moment.

I have been feeling depressed for several reasons. The most prevalent feelings being that I am scared my cancer will no longer be stable, and I will suffer immense pain and die. I also know it is such huge factor in my life an there is no ‘putting it all behind me and moving on’. After all, I am still  having treatment and getting scanned every three months, and will never be cancer free, it will always be part of my life. I am not trying to be attention seeking, I am just trying to be honest about the realities of life with a terminal cancer diagnosis, its important to know that the struggle is real. Very real.

Being Dealt A Bad Hand 

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

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

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

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

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

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

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

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

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

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

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

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

World Mental Health Day

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

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

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

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

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

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

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

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!

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.