The British 10k

I’ve decided to take on another race, the The British 10k in preparation for my Northampton Half Marathon in September. I know, I know, here I go again…

I recently took part in the Lake District 5 Peak Challenge for Trekstock. I know I’ve since moaned a lot, but It was the most mentally and physically tough challenge I’ve set myself to date, and I’m still a little injured because of it. Despite everything I wouldn’t change a thing.

Completing the 10k will determine if I’m on track for the Half Marathon for The Lewis Foundation in Northampton in September, so I am testing the waters so to speak. I’ve ran a half marathon before however I was much fitter then and the treatment I was having meant I could sustain a good training routine. This time around I haven’t done any running and have hardly set foot in a gym since late last year. My body moves slower than it used to and the frequency of treatment means I suffer debilitating fatigue for days on end.

Despite everything I feel like I have to do something, even raising a small amount could help make a big difference. I know the weather is set to be much nicer than when I did the London Winter Run 18 months ago for Cancer Research UK with family and friends, so that is a bonus.

Over the past few months I’ve been following the story of fellow stage 4 melanoma patient Emily Hayward via Instagram and You Tube and learnt today that she has sadly passed away. I know I am not alone when I say her story touched so many lives, both with or without cancer. I found her vlog really compelling as there are so many parallels with our journeys. She has inspired so many people with her strength and positivity, not just those with Melanoma but others undergoing immunotherapy and chemotherapy too. She maximised the good days, and chatted about making her days matter, and making her life count even though the odds were stacked against her. Emily accepted her diagnosis and lived life to the full every single day. There have been other great Melanoma blogs such as Dear Melanoma and Wrestling Melanoma I’ve followed over the years but sadly those people have since passed away too. Who is to say I won’t be next? No one.

News like this hits home hard! It’s a scary reality and I’m petrified about what may come, in an instant one can realise that life is so fragile, and so bloody unfair. The cancer club is a horrible club to be part of, but it is full of very incredible people.

I need to feel like I’m doing my bit; as I’ve said before it gives me a sense of purpose and focus. I want to make sure my life counts, and make each day really matter, I guess perhaps we only have one life after all?

The NHS is an incredible resource which we are very very lucky to have in the UK, but charities like Trekstock offer support that I haven’t always found elsewhere and feel it’s only right to try to make a difference in the hope it’ll help others like me moving forward, either experiencing a life with cancer, or a life after cancer.

If anyone is free early morning on Sunday 15th July and in central London, do feel free to come and cheer me along during The British 10k. I’m not sure I’ll be running, as I still need rest and don’t have time to train, but even if I’m walking I don’t mind, just as long as I cross the finish line. If anyone does wish to sponsor I’m looking to raise £200 from this event, and will also be raising money in August ahead of the Northampton Half Marathon. A link to my page for the 10k is here.

I’ll never understand why life deals some people such a bad hand; I feel overcome with emotion just thinking about it, and at the moment I’m one of the lucky ones which seems bizarre. Life is short, and I want to live mine to the fullest for as long a possible. I don’t want to waste a moment of this precious life. I just wish I had the answer on how to fix things.

Still hoping for a miracle.

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.

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.

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.