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!

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!

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.

What Having Cancer Has Taught Me

During the past few weeks I’ve been thinking a lot about my situation and what I’ve learnt from it. Being unwell has taught me a lot, including some valuable lessons. Of course, I would change this all in a heartbeat if I could, but I can’t turn back time.

Cancer has taught me It’s ok to be upset.

Over the past 11 years I’ve tried my hardest to put a positive spin on things, even when feels like there is no hope and I am loosing control altogether. Over the past couple of years, particularly since starting active treatment, I’ve established that that it is fine have down days. I am often my harshest critic and I have to remind myself of this from time to time. I often have days where I feel very emotional, when I wake up in the middle of the night with bad thoughts running through my head, it leaves me feeling emotional and exhausted.

When I wake up in the mornings there is sometimes a brief few seconds when I’ve forgot about having Melanoma, but that respite is all too brief. I reminded of this almost instantly, and I’m constantly plagued by thoughts of cancer and illness throughout the day, about how unfair and cruel life can be and that I can never turn back time. I know It’s ok to cry and be upset, I spend a lot of time holding it in, sometimes it helps, but I don’t think it will do me any favours in the long run. I often think I have bouts of depression, but figure that its understandable considering what my ‘normal’ is.

Every day I have moments that are constantly preoccupied with thoughts of dying, but then then I do my best to move on. If I didn’t my anxiety levels an my heart rate would be through the roof every hour of the day. No one likes being surrounded by negativity all the time, so I try to keep my distance from it.  It’s awful, yes, but right now it could be much worse and my life is so much more than having cancer.

Cancer has taught me a smile goes a long way.

Having a series of regular appointments for treatment means I’m all too over familiar with Leicester Royal Infirmary’s Oncology Suite. It’s a place I know like the back of my hand, and I hate the way it’s not unusual to me. There is an all too familiar smell in the air; of disinfectant, drugs and school  canteens. I feel like I come away at the end of a treatment day smelling of hospitals. When I go to the gym, I don’t even like putting a wristband on because it reminds me of being a hospital patient.

My appointments in the chemotherapy suite for my Immunotherapy often last all day, literally! Being out of the house for 12-13 hours every time is exhausting. Essentially I have to go to get my bloods done, see my Oncologist, and then as long as my team are happy with my bloods I’m ok to have treatment. Due to cost implications the pharmacy at my hospital make up the immunotherapy drugs in large batches, once all the patients who are receiving Pembrolizumab are ready for treatment. It can be very frustrating having an appointment scheduled for a time that is essentially completely fluid depending on other patients and how well staffed departments are that day. Currently I have Pembrolizumab with the same cycle of about six or seven other patients, so I know I’m not the only one playing the waiting game. Being at the hospital is a stark reminder of reality, and it’s challenging being surrounded by other unwell people all day. The staff are great, but the mood on the ward is often very somber. It’s like we’re all on the waiting list for an exclusive club that we don’t actually want to go in or be part of. There are a lot of unhappy or sad looking faces on the ward. In these circumstances I’ve learnt that a smile goes a long way and can often make the world of difference to me when having treatment. It reminds me I am not on my own.  I’m pretty sure every patient there would be somewhere else given the choice, it isn’t a place we get excited about visiting, there are millions of other places I’d rather be.  I try to smile as much as I can, a joke, an offer of a sweet or a smile back from another patient or nurse makes it all a little less painful.

Cancer has taught me to be kind to my body.

Cancer has taught me I need to be kinder to my body than I perhaps once was. Good food, rest and sleep are all key, especially during a treatment week.  Naturally, this doesn’t always happen, but they really go hand it hand with one another, and the combination often makes me feel so much better. I know I shouldn’t underestimate the power of rest, my body needs It. I try to go to the gym regularly, but have decided not to go in the week after I’ve had treatment. It only makes me more exhausted and it’s not worth it. I’ve had rest week during my last two cycles and I think it works well, going to work is a challenge, but it’s doable, so I don’t need to make any more difficult by going to the gym and meeting friends in the days following. Since trailing this, I’ve felt almost back to normal after about six days and ready and energised for whatever is thrown at me. Being kind to my body, and allowing myself to cut it some slack has been really beneficial. What better excuse to have a lazy week and use the cancer card anyway? I need to try and keep my diet varied and healthy, but sometimes this can be easier said than done. I’ve given up chocolate and fizzy drinks over Easter, just to see if I have the will power. I’ve had my moments but on the whole I’ve cut back which is a great.

Cancer has taught me knowledge is power.

Knowledge is power when it comes to feeling in control of my treatment. More often than not I overhear conversations in the Oncology waiting room with other patients and their familIes who seem as though they aren’t necessary as clued up on their treatment and how it’s going as I am. As the youngest person there by at least 30 years maybe it’s a age thing, or perhaps they don’t quite accept how ill they really are?. I like to know where I stand, and what options might be open to me later down the line so I like to keep abreast of developments in cancer treatment in the media. There have been a few breakthroughs in the treatment of Melanoma over the past few years, with Pembrolizumab being a drug I read about prior to recieving it. I sincerely hope they are more to come. On the flip side, there are the Daily Mail type articles which suggest anything and everything have the ability to give you cancer, or stop you getting it in the first place. I’m all for a fad, from chia seeds to my latest discovery of bitter apricot kernels, I agree that every little helps it if makes me feel like I’m doing my bit to help, including cutting out the sugar, but I know eating broccoli everyday isn’t going to cure me. Nothing will cure me now. Call my a cynic, but if one food such as broccoli really was the elixir of life we’d all be getting it by the shed load on the NHS wouldn’t we? Perhaps an annual broccoli jab?

Cancer has taught me I am a strong person.

The most valuable thing I have learnt since having cancer me that I am stronger that I think. Cancer is a huge part of my life but it’s not everything I am about. It doesn’t define me. I am a sister, daughter and friend; I am an aspiring traveller, dance and theatre enthusiast, brunch lover, keen writer, documentary fan, wannabe chef, and a sometime gym goer. I know that I am not really a good runner (despite my best efforts), I am not an avid fiction reader, cyclist, or confident swimmer (I’ve never really been sporty, it’s the lack of coordination, you won’t catch me doing the London – Paris bike ride) I’m not a coffee drinker, or a master at arts and crafts, I can’t hold a tune and I don’t really have a good sense of direction. I am strong though, and right now that is what counts.

What Lies Beneath

More and more often I’ve been finding that people don’t seem to realise or appreciate how unwell I am. I’m lucky that I currently look well on the outside and don’t have any visible signs of a disability, therefore people often dismiss it, or wrongly assume that there will be an endpoint to my treatment.

Very few people see me at my worst; hooked up to iv drugs in the chemotherapy suite, or lying in bed all day with no energy to move or get dressed. It’s not exactly a case of what you see is what you get, there is so much more going on. I guess it’s hard for outsiders to comprehend what lies beneath the surface. It doesn’t help that I constantly play things down for my own sanity, I act the part of someone who is 100% healthy because it makes me feel better. My A Level Drama classes have finally come in handy.

I’ve recently learnt that the blue Transport for London ‘Please Offer Me A Seat’ badges are to be rolled out on a permanent basis. I took part in the initial trial of the badges with TFL towards the end of last year.  I found it to be helpful, however I think the general public need to be made more aware of the scheme in order to make it a success. Before the badge was introduced one of my friends actually wrote to TFL about the lack of awareness for disabled people on public transport, so it’s good to know the public are being listened to. I hope this will make a real difference to people with invisible health conditions, myself included. My original blog post about the trial can be found here.

I have various signs of illness, however once I cover my head with a wig and cover up my portacath and scars, I look just the same I anyone else. Perhaps in some ways it’s the ultimate disguise. For the most part, this is a good thing; I can pretty much go about my daily life without it being obvious I have cancer. Having ways of disguising my condition does wonders for my confidence. I know I can’t win and I want people to understand my situation, but I also don’t want to be treated any differently. I don’t want people in the street to see I’m unwell, but I also want a greater awareness and understanding too. I’m just going around in circles really!

Since making my blog public I have found it liberating and also very helpful, it allows me to speak freely and honestly about living with Stage 4 cancer. Others have commented that it has helped to give them a better understanding of what I am going through on a daily basis, but most of all it means I am not feeling so overwhelmed by it all!

With immunotherapy treatment there aren’t too many side effects, certainly less than I’ve had with other treatments (yay for eyebrows and hair beginning to grow back). Pembrolizumab doesn’t work in the same way as traditional chemotherapy.

When I was first diagnosed with Stage 4 cancer I was told the average life expectancy was 18 months. Six years on I’m still here and I’m sure that sometimes people must think I made it seem worse than it was, however due to advances in treatment and timing being on my side, I seem to be one step ahead of cancer for now.

People cannot see how unwell I am, however we cannot see the air that we breathe, but it doesn’t mean it’s not there. Yes, I’m still really really unwell, if not more now than I have been over the last few years. No, treatment will never finish, and no I will never be cancer free. That’s just the way life is.

But for now, between my ultimate disguise, my TFL badge and my blog posts, I can try to achieve a sort of strange balance of being treated normally but with consideration for my condition, whilst also raising awareness of Melanoma.

Running And Raising Funds

A few days ago I signed my Dad, siblings and I up to the Cancer Research London Winter Run.The 10k race takes place around London (hence the title) on Sunday 5 February 2017. I feel like I need a goal to get me motivated again, and its also a great way to raise money for an amazing cause at the same time. Ideally it would be amazing if it gave me the pus to start exercising properly again.

I hadn’t heard of this 10k before, but wanted to find something in early 2017. As much as a tough mudder might sound a little tempted, I know I am kidding myself if i think I’d be able to complete the challenge. I’d admire anyone who has done one before, but the possibility of getting an electric shock during one of the race elements really puts me off. The Winter 10k looks like it could be a lot of fun, who doesn’t like a bit of fake snow and polar bears. Last year the route began at Trafalgar Square, and then past landmarks such as Somerset House, Guildhall Yard and St Paul’s Cathedral so if anything it’ll be a nice sight seeing tour.

I’m looking forward to participating as a family, between us we’ve done various half marathons and head shaves but nothing all together. I also have a group of friends from work who are joining out team, which is amazing! Teamwork makes the dream work after all! Overwhelmed by the support so far.

I haven’t tried to run since I ran a half marathon in October 2015, a lot has changed since then health wise, but I think I could manage a 10k. I don’t think i’ll be able to run the whole way, but I don’t mind as long as I finish. I’ve never trained for anything over Winter but according to the Winter Run website running in at this time of year is actually easier on the body! More information on the reasons why can be found here.

I’ve set up a family Just Giving site. Our plan as it stands is to raise £800. Currently we are half way there! It might not seem like much in terms of treatment costs, but every little helps! I should put my apron on and get ready for a bake sale or two in the new year.