When No News Is Good News

A few weeks ago I had my first PET CT scan since adopting a ‘watch and wait’ approach to my cancer treatment earlier in January. Although I had to wait almost a month to see my consultant for the results, I am thrilled to report that all has remained stable.

I feel like this a major hurdle I’ve somehow manage to navigate. Naturally, every scan makes me anxious and scared, but this felt different as It was first time in years I’ve had a scan whilst off treatment. It’s the first time since I stopped doing anything to help my melanoma remain stable. No longer doing my bit by going for Immunotherapy is hard to get my head around, but as they say, no news is good news.

I am still feeling very fatigued, but as many people have pointed out to me I have an active social life and a busy full time job, so there is no doubt in my mind these are contributing factors. Often it feels like 10 hours of sleep a night is not nearly enough, so I probably need to reign it in a bit. It’s hard to find the time to see friends, family and work a 40 hour week, but I often feel like others around me manage it! I know my next few weekends are quiet and I have some annual leave coming up soon which is a blessing as I can spend some much needed time chilling out, watching Netflix, getting up late and doing small things like sorting out my wardrobe, and putting photos from my summer holiday trips to America and Thailand on my laptop and getting some printed; something I’ve promised myself I’d do for months, but I’ve never felt I had the time.

I’ve also been relatively quite on my blog of late as I’ve tried to settle in to my ‘new normal’ and readjust to my routine (or what feels like a lack of routine altogether!) and in all honesty, I’ve been too tired when I get home from work to write a post when I don’t feel I’ve too much to say. I’m just trying to get on with my life, which is a good thing, and exactly what my Oncology team have been telling me I need to do.

I’ll be celebrating today’s win with an early night and attempt to carry on my ‘new normal’ life until my next scan in the summer.

Finishing Cancer Treatment

This is a blog post I never thought I would write, I’ve been keeping some news to myself over the past 12 weeks, which is a pretty big deal. I am no longer receiving Pembrolizumab on the NHS. For now, I have finished taking the drugs and am treatment free and am adopting a ‘watch and wait’ approach.

I am no longer making the trip to Leicester Royal Infirmary every three weeks for Immunotherpy and am now on surveillance. After receiving various chemotherapy and Immunotherapy treatments over 4 and a half years I have now pressed pause on this part of my cancer journey. This means I will have regular scans to check for disease progression and wait to see what happens, and make a decision about future treatment when the cancer returns.

For me, being told my stage 4 cancer diagnosis meant I’d likely live for 18 months back in 2010, It’s difficult to know how to process where I am at right now. This remains even more difficult to explain to others, and I am sure there will be many reading this blog post who will ask how and why this has happened. Some my query the status of my health, does this mean I am cured?! Sadly not, but for now at least, it appears that my melanoma is under control and my last few scans have appeared to show little or no evidence of disease present in my body. Melanoma is hiding away for now, however, it is an aggressive cancer so I really don’t know for sure what could happen later down the line. All I am able to do for now is to attempt to live in this new world and continue my day-to-day life, in the hope it’ll be a really really long time until I have to resume treatment.

I am simply waiting, and taking things one day at a time, as only time will tell if and when my cancer will return. I have been on ‘watch and wait’ earlier in my stage 4 journey; after surgery to remove my lung tumour in January 2011 I remained disease free until May 2014. I still had the occasional subcutaneous lump crop up somewhere that was surgically remove, but for the most part was considered NED (No evidence of disease).

Pembrolizumab has been my life line over the past two and a half years and 40 odd cycles later I am going solo. For me, this is incredible news that until just before Christmas seemed like a total pipe dream. Immunotherapy is still so new, so it has been difficult to predict what the future holds with limited data on treatments, and the likely effectiveness they could continue to have in the future.

To cut a very long story short, I visited my oncologist in November last year and he informed me that it was looking likely that The National Institute for Health and Care Excellence (NICE) were planning on making some changes to how advanced melanoma is treated, specifically for patients who had been taking the drug for over two years and were currently NED. He explained that the current guidelines were set to change, which meant that if I stopped taking Pembrolizumab I could be re-challenged with the drug again if necessary in the future, therefore giving me a chance to have a break for the gruelling routine. This came as a huge shock to me, as it was the total opposite to what I had been told before. I have been living in the knowledge that I would be on the drug for the rest of my life, or until it stopped working, as I wouldn’t be able to take it again should I stop voluntarily and recurrence occur.

My oncologist told me that when the drug was first given on a trial basis eight years ago it was only given for two year, so I believe there might well be some people out there who are doing well six years post Pembrolizumab, but the data doesn’t go any future back. If so, I’d love to hear experiences of these patients. Naturally, I am sure the decision by NICE is also a cost saving measure, as it is so expensive to produce. I guess it works out cheaper for patients to re-challenge later down the line rather than be on the same drug for years on end. I am ok with this approach as long as I know I have options. When I first took Pembrolizumab in 2016 it was my only treatment option, but now there have been other drug developments in the field, meaning in the future I might not have to put all my eggs in one basket. It is petrifying, but I am hopeful there will be more positive change around the corner.

In late January, after a delay in the final decision I was told I would now be under surveillance. This was just two days before I was due back for chemo following a Christmas break. Being under surveillance makes it sounds like I am been threatened with as ASBO, or about to take an exam under timed conditions!

As my portacath is currently not in regular use it now needs to be flushed frequently. Right now I am unable to have it removed, I asked my oncologist about this and he said it should be left in for the foreseeable future and we might be able to discuss removal at some point down the line. Due to my hospital being far away from where I live this has taken longer that usual to sort out but hopefully my portacath will play ball at my scan tomorrow.

Over the last three months, the decision to stop chemotherapy has had a big impact on my mental health. This hasn’t come as a huge shock to me as I have felt as though a rug has been pulled from under my feet. All of a sudden the security that I once knew has disappeared and I am in uncharted territory. As much as I hate having treatment, I felt like I was doing my part to keep this awful illness at bay, but without it, I feel like I am going into battle without any armour. Surely I can’t just do nothing?!

I have been cautious not to mention this to many people, as the future is so unpredictable, but it’s now been 12 weeks since my last infusion and I am due my first PET CT scan tomorrow to check for any progression. This is the first time I have had a scan since early December, so I am keeping everything crossed the drugs are continuing to work after treatment has ended.

I’ve heard a couple of stories from people who have also stopped Pembrolizumab, but have done so in the knowledge they cannot be re-challenged. Apparently, it takes a few months to adjust, so unsurprisingly I haven’t felt better in myself as yet. I am waiting for some new energy levels to kick in sometime soon!

I still can’t believe I am not currently having chemotherapy, given all the negative things I have been told during my cancer journey it is a lot to get my head around. Despite everything, I know how lucky I am, even on days when I don’t feel good. I will never be completely rid of cancer, it will always be a huge part of my life, but for now things are ok.

I will update with my news once I’ve had my results in a few weeks.

Fighting Fatigue

Since Christmas, I’ve noticed I’m in need of more sleep, perhaps In part it’s the cold winter weather and dark mornings, however I feel I have been fighting fatigue more than ever recently. It’s not ideal given that I had a chemo break over the new year, and in theory I should be feeling more awake and energised than usual.

I long for the day when I wake up and actually feel revitalised and refreshed from catching my z’s, rather than feeling like however much I sleep I get it’s never going to be enough. At the weekend I slept for 11 and a half hours, only to wake up get washed and dressed and go back to sleep. I’d slept for nine and a half hours the previous night so I can’t blame it on a lack of sleep the night before.

Everyone always tells me to listen to my body, but right now I feel as though it’s constantly running on empty without a way to refuel? Sometimes I’m so shattered that I practically spend a whole day in bed, I worry that I’m wasting the day away, this precious time whilst I am ‘healthy’ but feel like I have no choice! It is so frustrating being chronically tired, I think it often adds to my depression and negative feelings.

I’ve learnt there is a lot of power in taking a nap, but it’s certainly not the fatigue beating cure I’m searching for. Perhaps it makes things worse? Recently I’ve been going to bed around 9pm and sleeping for as long as physically possible, by the time 4pm comes around at work I feel like a zombie, struggling to keep my eyes open, I am done for the day and in need of a sugar hit to keep me going. At the weekends naps and a must, and I wonder how on earth I manage Monday – Friday without them. I sometimes wish my office had a little room where I could go and lie down for an hour.

Often, even though I’m exhausted, I have nights where my worries keep me awake and it’s difficult to settle, which make the following day even worse. Tiredness affects me both mentally and physically, and it can be really isolating as I am always envious of others who seem to have boundless amounts of energy. I often end up postponing or cancelling plans because I simply don’t have the energy. Having spent the past four and half years on treatment I don’t think I know what being awake and refreshed feels like anymore. I thought I’d gotten used to feeling this way but perhaps not if that past few weeks are anything to go by.

I know that keeping active can really help reduce tiredness, but it can also make me more exhausted, so I feel like I can’t win. Hopefully it’ll pass as the days get longer and lighter. I’m bored of being physically, emotionally and mentally tired.

Blue Monday

According to reports, a combination of bad weather, post-Christmas financial struggles and failed new year’s resolutions make today the most depressing day of the year, aka Blue Monday. This is the day when we as a nation are supposedly the most miserable; the nights and long and the days are dark, and its still a week until pay day! Understandably, all these factors contribute to feeling a bit low at this time of year, however I read that the term was originally made up by a travel company as a gimmick to sell summer holidays a few years ago. Interesting!

As my treatment cycle takes place on a Monday, I’ve had my fair share of my own Blue Mondays over the past few years. My low feelings are not dictated by a formula, or specific date in the calendar so I’m not sure Blue Monday is as legit and some make it out to be, however it can only be a good thing if it encourages people to talk about feelings and therefore acts a chance to break down stigma and in turn raise awareness of mental health issues. I’ve made no secret of my struggles over the past few years, but more specifically over the last 18 months.

I’ve not written a blog post since the start of January, mainly because I haven’t felt like I’ve got much to say, but I’m also consciously trying to cut down on my technology and social media use, particularly during the working week. While social media is an incredible tool, sometimes aimlessly scrolling through apps doesn’t help my my mental state, and I am sure I am not alone in that. It’s certainly not one to help on a Blue Monday! As I wrote my previous post Goals For 2019, I am trying to shift the focus to doing more of the things I enjoy, such a cooking and socialising.

Yesterday I made two dishes for the week; a leek, potato and pea soup from a recipe by Jamie Oliver, and Deliciously Ella’s warming winter curry recipe. My week feels more manageable if I’ve done some prep which means I don’t have to come home and think about what to cook for dinner. I find the working week tiring enough! I’ve enjoyed doing a bit more baking recently and I also made some very questionable looking (but very tasty) cinnamon rolls. Baking was about the only activity I took part in when I was living back at home after I had my first operations to remove an brain tumour and lung tumour around eight years ago. It was something creative I could do without the need leave the house. Encouraged by my family, baking a cake gave me a goal to aim for and I found solace in this solo activity. The first recipe book I was a given was the Hummingbird Bakery Cookbook and I’ve gather a collection of books over the years, from Mary Berry, 15 Minute Meals to Part-Time Vegetarian to name a few. For Christmas I was given two new books, New York Cult Recipes and The Little Swedish Kitchen.

As well as being organised for the week ahead I’m going to go for a walk this morning to go to a local cafe on my way to the gym before going home to work. Nothing says Happy Monday more that a nice little treat too start the week. I know there will be plenty more Blue Mondays and down days to come, so making the most of the good days when I feel well in myself is really important.

Goals For 2019

I am not really a fan of new year, and setting resolutions, let’s be real, Its probably not going to happen, so why am I pretending! Like many years, I just hope I’ll be well enough to see the next one in! I have problems which I know cannot be solved, and trying to force myself to be someone new just because it’s a new year isn’t going to make those problems disappear.

I came across the below quote on instagram the other day and thought it summed up perfectly exactly what I should be focussing on over the next year and beyond.

“So, what if, instead of thinking about solving your whole life, you just think about adding additional good things. One at a time. Just let your pile of good things grow.”

2018 has been a year with some huge highs but also some massive lows. I think the whole ‘coming of age’ thing has been a huge part of my insecurities and I have really struggled with my mental health. As each year begins, I start to worry about the year ahead, and the challenges life may throw at me, both with or without cancer. It’s hard enough being a single 30 something trying to get by in life without having a serious illness to contend with. I have a GP appointment next week, followed by pre treatment bloods and then I am back in for chemotherapy mid-January. Although a Christmas break is much needed, it doesn’t take much for the focus to shift back to the dreaded C word. I’ve come up with a short list of things I am going to try and do to make life seem a little less daunting each day, just taking some time for myself to focus on non-cancer related successes or key moments. Not a resolution which will no doubt be broken, but key things to try and help me live my life as well and happily as I can.

Make regular lists of things that make me feel happy…and do more of them

This could be something small like going out for brunch with a friend or family member, calling a friend I’ve not seem or spoken to in a while, or going out for a walk and getting some fresh air. If I make a list then I hope I’ll put more effort into doing them again because i know they bring me joy. I used to be a huge theatregoer, having graduated with a drama degree before my stage 4 diagnosis, but I could count on one hand the amount of times I’ve been to the theatre (non work related) in 2018, and feel so out of the loop with what is happening in theatre land, even though I practically work in the West End. I need to put more of a focus on doing things for myself, no matter how small they may seem. I love the theatre so I want to try and add this as one of my additional good things over the next year. Not doing this seemingly obvious things makes me feel like I’ve lost my way slightly and in turn lost a bit of my personality. Do shout if anyone has any good theatre recommendations, both London and beyond.

Spend time with supportive people

It’s important for everyone to be around good people, or in situations where there is a lot of support. We need radiators and not drains in our life, a good friend of mine uses this analogy often and it really hits the nail on the head. Radiators are those who give warmth, those who gave something back to others. They naturally have their own problems and situations where they need support, but generally, seeing them, or interacting with them is a hugely positive experience. For me, these are the ones who lift me up and listen, those who make me feel better about the injustice of the world. Drains are the opposite; those who drain energy and take more from the friendship than they give and don’t always listen to others.

Be grateful

No matter how hard it seems we all have something to be grateful for, even on the darkest of days. I went on amazing holidays in 2018, which I am hugely grateful for. My trips in 2019 will be much smaller scale, but it was completely worth it and the experience will stay with me. Apparently those who take time to notice and reflect upon the things they’re thankful for can experience more positive emotions, it’s a no brainier really. Focus on the good! Being grateful doesn’t need to be reserved for big occasions, but simple daily activities that bring joy. Part of this also includes thinking more carefully about my use of social media, and be sure to use it for good, rather than comparing my life and my successes and failures to people online and feeling bad about it. I must remember I survived the last year and I am grateful for that. My ultimate goal is to stay alive!

Here’s to 2019!

Another Year With Cancer

Another year seems to have gone by in a flash! Christmas 2018 is upon us and I’ve been thinking about everything that has happened over the past year.

In some ways in been a quiet year in cancer terms, I recently had my 41st cycle of Pembrolizumab and all remains calm on that front. Luckily I have a break built in over the holidays and I am not due back at Leicester Royal Infirmary until mid January. Hooray!

My scan results in early December indicated all remains stable, which is fabulous news. It doesn’t mean I’m cured of cancer, or that I’m in remission, however it shows how amazing Immunotherapy is and that things are continuing to move in the right direction. I know my fourteenth year with Melanoma will continue to challenge and surprise me, but hopefully I can turn this in to more of a positive.

In the last twelve months there have been some huge highs (trips of a lifetime, new family members) and some massive lows (feeling overwhelming sadness for the life I feel I’ve lost, getting major FOMO, feeling left out and generally feeling not good enough for others). The stability of my mental health has been hugely challenging, and there have been multiple times where I’ve felt I had control of life; only to realise that I couldn’t be further away from feeling in control and it actually feels as though my whole world has come crashing down around me. Even as recently as last week! I haven’t felt as bad as this since I was first told I had a brain tumour over eight years ago. With another year looming I’ve began to worry about the year ahead, and the challenges living with cancer might throw at me. No amount of therapy or medication will make this disappear, but it’s slowly making things a bit easier. I know that I will have to continue combating my anxiety and depression in 2019 no matter what life throws at me.

In truth, I’ll never quite get my Christmas miracle of a cure for stage 4 cancer, but I can still dream. Deep down what really matters is spending time with family and people I care about during the holidays. Last January I started a full time job alongside chemo, and it’s meant down time has been less of a feature in 2018. That crazy thing is. I did it! I held down a full time job whilst having treatment for twelves months and I am determined this will follow through into next year and beyond. Often I don’t feel as that I have many ‘successes’ so to speak, but If I had to pick something I am most proud of in the last year, that would almost certainly be it.

As ever I’m apprehensive about the next 12 months and hoping it’ll be peaceful and calm.

Wishing everyone a Merry Christmas and a very Happy New year!

Scan Results And Festive Freedom

Yesterday I received results from my last PET CT and MRI scans and I’m relieved to say that the results were good and everything continues to be stable.

After getting over the Scanxiety, I was feeling somewhat confident that the results would be stable, however the worry is never too far from my mind. Hopefully this means I can relax a little over the Christmas and New Year period.

I am fortunate enough to be having a chemo break and am not due back to see the oncology team at my hospital in Leicester for another six week. In my 2 and a half years of receiving Pembrolizumab this is a rare occurrence, and one I am especially grateful for at this time of year, fingers crossed this will be a blissful time of freedom over the festive period.

I haven’t written a blog post since The Truth About Depression three weeks ago. Part of me has been living in purgatory waiting to get my scans over and done with, and the other part has felt like I’ve not really got anything more to say. I haven’t suddenly snapped out of my downward spiral, but I am taking more steps to try and help myself.

I have now had my 41st cycle of Pembrolizumab and the fatigue seems to be hitting me more than ever. Lucky I have been working from home and resting which always helps, but powering through never feels like an option when it comes to post treatment tiredness. This is something I didn’t appreciate before I started having Pembrolizumab. A while back I wrote a post called Tired of Being Tired, which summarised my feelings on being physically and mentally exhausted. After reading it back, I feel the same as I did back then, annoyingly getting used to it doesn’t make me feel any less exhausted.

Exhaustion comes in waves, and when it hits it seems to affect my energy levels straight away. There is something about being in a hospital waiting room which makes me feel so sleepy, even with all the alarms and buzzers going off every few minutes. Having the treatment itself makes me become a total zombie, and I often struggle for a few days afterwards, making small things such as walking up the stairs or packing a bag seem like a huge struggle. I don’t trust myself to drive after chemo as my judgement certainly isn’t what it should be. I long to feel free and full of energy again, so perhaps having a treatment break over Christmas is exactly what I need.

A couple of people have asked me if I planned to celebrate my stable scans results. A few years ago I used to mark them as more of an occasion, but I honestly don’t think about them as a moment to jump up and down for joy. Nowadays I am too scared of what the future holds and I’ve been feeling particularly vulnerable over the past couple of months.

Of course I am so grateful to be in this position, even if living with cancer does take its toll, but I prefer to try and reset my mindset to one that isn’t in complete panic mode. I want to try and look forward to the next few months rather than just celebrate one moment. Hopefully I will feel less like I’m holding a poisoned chalice and perhaps as though I am holding a glass half full instead.

Fingers crossed for more good news in 2019. Until then I need to go back to sleep, rest and try to fight off a cold I think is coming my way as I’m a bit under the weather.

Living With Scanxiety

My next PET CT scan date is looming and my major fears about the future have reared their ugly head once again.

Scanxiety is a term used to describe the anxious feelings that arise in the time leading up to an imaging scan, during the scan and whilst waiting for the results to check for disease progression. I’ve read about the term a lot over the past few years as it’s frequently referred to within the cancer community.

Over the last eight years I’ve had countless scans; MRI scans, CT scans and PET CT to name a few. Each come with their own levels of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago! I spent the night before Christmas Eve in hospital as a result and it’s fair to say the day itself passed me by and I only woke to eat and went back to bed again as soon as I could. It wasn’t such a Merry Christmas after all. Now I am contrast free and go for PET CT scans every three months, which eliminates the use of contrast, instead using a radioactive tracer which I’ve so far had no issues with.

My anxiety levels have increased over the past few weeks, I’ll go from feeling fine to the brink of bursting into tears on the short walk from my house to the tube station on my way to work each day. I keep having nightmares about my diagnosis; being told Pembrolizumab isn’t working and there isn’t any more treatment that can help me, or loosing my hair again.

When you have cancer, all the focus is on physical health and trying to keep disease at bay. The constant cycle of treatments, particularly with invasive chemotherapy and Immunotherapy appointments over the past four years has meant its my full-time job. I worry often that my mental health suffers as a result, and it’s only in the past year or so I’ve really focussed on trying to get myself mentally stronger. Lately I’ve been feeling as though I am having a bit of a midlife crisis, and dealing with cancer daily is more than I bargained for, more on that in a future blog post!

Despite me being a ‘lifer’ in cancer terms it seems I would be used the routine but in reality it doesn’t make the multiple appointments any less worrying. The ridiculous thing is that regardless of me loosing sleep or not, the outcome will still be the same. What will be, will be after all! What I know is that it is something that consumes my mind from the moment I wake up until I go back to bed at in the evening, there is no rest.

I have been feeling sick and suffering from headaches, which I’m sure are a sign of the worry and stress, or maybe I just need to eat breakfast when I wake up. My experience means that my mind jumps from headache to deadly brain tumour in a instant. I know all the signs because I’ve been there before, so have had a couple of acupuncture sessions in the hope some tension will be relived.

The next few weeks are going to be testing. I’m wishing time away again so I know where I stand.

Seeing Scars

The clocks have gone back and right now I’m feeling grateful for winter coming our way. I don’t want it to be freezing cold all the time, but like many people I’ve started feeling the need to hibernate as the days get shorter and it gets dark so early. The colder days give me a good excuse to say no to things without being questioned. After work I want to get home as quickly as possible and hide under my duvet and escape from the world.

The winter months mean its easier to cover my many scars from surgery and cancer treatments with high necks and warm layers, which I am very grateful for. My scars tell a story, a huge narrative within my life, often they are scars that no one else sees or notices, but I know they exist and they get me down a lot. I have multiple scars all over my body, including a large one on my neck form my original melanoma site. Often, when I tie my hair up I worry other people will notice and stare at it, or ask questions about how I got it. My scars make a feel vulnerable and despite being 13 years old, the one on my neck is still prominent, and its the last thing I would want to talk about.

As human beings we are a curious bunch (aka nosy) and over the years there have been a few incidents where I have been asked about the scar of my neck by total strangers. Needless to say I’ve not been impressed by this! Another memory that sticks in my mind when I saw someone from school on a night out when I was back from university for the summer, they saw me and said; ‘what the f*** happened to your face?’ I’m not quite sure I knew how to react, but one of my friends quickly jumped in and told the person in question where to go! Firstly, It’s not my face, its my neck! Secondly, what a way to make someone feel terrible about themselves and shatter the little confidence they had left! Years have passed and I’ve not seen that person since, but the memory is still vivid. Clearly they weren’t taught tact and manners growing up – who does that?!

My hatred of my scars will always be there, during my holiday to Thailand in the summer I noticed some spots of vitiligo getting progressively worse; this is one of the side effects of taking Pembrolizumab, so I know I shouldn’t let it get me down, but it becomes another reason to dislike what I see, and it’s something else I cannot control, like all the other ugly marks on my body. The majority of my vitiligo is on my torso and my thighs and legs so it isn’t easily spotted by others, but I know its there and it certainly has an impact on my confidence and what I choose to wear.

I try to overlook my scars when I look into the mirror, but they’re not easily missed, I am able conceal some, but others are too noticeable or in too much of an awkward place to hide. In some ways I should be proud because they tell a story of everything I’ve been through to stay alive, they should be constant reminders of how strong I am, but the person I now see in the mirror is totally different version of me. In reality I hate my scars and the story they tell.

I’ve been thinking about getting a tattoo for some time, possibly over my portacath site. I got one inserted two years ago after numerous issues with my veins meant it was getting more and more challenging for nurses to successfully cannulate me for chemotherapy.  Despite being discreet and easier to manage than the other options, my portacatch protrudes slightly from my chest which I find ugly. When I have dark days I wish I could rip it out of my chest, like the scars and vitiligo it is another physical reminder of my diagnosis. I am not sure what tattoo I would have, it’s just be an excuse to cover up something I hate. Maybe I’ll become addicted and get them all over my body! I had my eyebrow tattoos done around two and a half years ago and it was one of the best decisions I made at the time.

All the scars remind me there is an unwell person staring back at me and I constantly have to dig deep for the strength to keep going. I don’t want all the scars to define me, that’s not who I am, but sometimes its hard to get past. It’s more than just the physical effects, but it’s the psychological ones too. Cancer has changed every single aspect of my life and the scars are a permanent reminder of my lack of control.

The various systemic treatments I’ve received over the past 4 years have shattered my confidence, made me loose my hair and eyebrows, made my skin itch and become sensitive, made me sick to my stomach, hardened my veins and kept me awake with fear and worry for hours and hours on end. They have fundamentally changed me as a person. My scars will always be a reminder of just that. I need to learn to embrace them, right now all I feel is sadness each time I catch my reflection in the mirror. All I see are my scars.

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.