Radiation, Results & Scan Reductions

Three weeks ago I had my third PET CT and my first MRI scan since adopting a ‘surveillance’ approach to my cancer treatment. I have now been immunotherapy free since December last year, almost twelve months ago.

After a hugely stressful day at Leicester Royal Infirmary yesterday, I am relieved to report that I don’t have another appointment for a scan until April next year, six whole months away. I’m not sure I’ve had a six month break between scans for the past nine years, and calculated that I must’ve have around 50 scans in total since my stage 4 diagnosis.

My day started off stress free, arriving at the hospital four hours before my appointment in order to have my portacath flushed at the Chemotherapy suite. I then began the long wait for my scan results during the afternoon clinic. Around 30 minutes after my my appointment time I was called in to see my Oncologist who explained that the MRI on my head was clear, however my PET CT scan showed a ‘hot spot’ at the top of my spinal column.

Having been diagnosed with a brain tumour nine years ago one of my huge fears is being diagnosed for a second time. The surgery and recovery were brutal and I get emotional just thinking about it. I’ve worked hard to try and block out parts of my life around that time, but it all cane flooding back to me.

Within an instant I felt very distressed, as there were two areas where the scan contrast showed a small area of uptake at my previous follow up appointment. I’d seen the ‘hotspot’ on the scan on the computer screen as I walked into the consultation, and this felt like a nightmare coming true. My mind was racing, worrying that I had another brain tumour, something I’ve been living in fear of for years, and that I didn’t know how I would ever be able to cope with another set back of such a huge magnitude. I have made plans for next year, and have a life to live outside of the cancer bubble. Cancer affects my mental health every day and I felt like the walls I had worked so hard to build up started to crash down around me.

My Oncologist explained that he needed a second opinion, as the MRI result was the more robust and reliable of the two, but something wasn’t quite right. It didn’t stop my mind going into overdrive during the next hour when my parents and I went back to the hospital cafe to try and kill time. Fortunately I didn’t have to wait long for a follow up call, and went back to see my Oncologist a little later. Having discussed with various colleagues in radiography, the conclusion was that I must’ve moved my head slightly during the PET CT scan which then gave a false reading. Who’d have thought moving my head so slightly could cause such a drama!

My scan was a PET CT, PET scan are often combined with CT scans to produce even more detailed images, however it’s likely that I moved slightly meaning that when the two types of images are put together it gave a false reading that I had a ‘hotspot’ at the top of my spine. I’ve had dozens of PET CT scans and never experienced this before, however 45 minutes is a long time to stay still whilst the scanner works it’s magic.

Once the panic had passed and the cause of the contrast uptake determined, we began a conversation around future plans for my follow ups. I find it mentally challenging to keep attending regular scans as each once presents a lot of worry and anxiety in the lead up. With results taking up to a month, I spend about six weeks in every three month period worry about having the scans and then worry about the results once it’s taken place. I’m just going around in circles and the results will never been in my control, no matter how much I wish I could change that. It’s no exaggeration to say after nine years I’m at the end of the road with it and can’t take much more.

I’ve had multiple scans over the years, I’ve lost count of exactly how many. During me appointment my Doctor and I also discussed the frequency of scans and exposure to radiation; as I am now expected to live longer than when I was diagnosed in 2010, and have surpassed expectations, so much exposure could negatively impact my health in the future. We now need to be mindful of how much radiation I’ve been exposing myself to as it may increase my risk of other illnesses, including different types of cancer in the future, oh the irony!

It was decided that as I am not currently showing disease I’ll wait six month for my next scan and follow up results, which hopefully will allow me some breathing space. I want to try and figure out what’s important to my outside of the cancer world, raising money and awareness for charities will always be important to be, but I feel I’ve lost my way and I’m not really sure who I am anymore. I’d like to attempt reignite some of my interests and live the life a 32 year old in London should be living, and not living in constant fear.

It’s so hard living In a world where I’ve been potentially offered a ‘cure’ or long term disease stability when all I can do is worry about my cancer returning. I struggle to shake off the cancer label, but also realise that it sometimes feels like my USP, which is very strange. I got asked recently in causal conversation what was important to me, but didn’t feel like I wanted to expose my diagnosis by telling people that raising awareness and funds for charities was close to my heart. It’s great, but also a bit of an awkward conversation, as I’d feel I would need to give context. I didn’t go on the This Morning sofa with Holly and Phil and speak about my life in YOU magazine for the sheer fun of it.

I am going through a phase of feeling very lost, like I don’t belong or have a place in the world where I feel I fit in. I have some many ‘lost’ days where I feel like I can’t relate to anyone or anything around me. With cancer everything feels like such a battle, from medical appointments to just getting up and getting out of the house every day. I really hope that reducing the frequency of my scans, and only having two over the next year will have a positive impact.

The Wait for Autumn Scan Results

I have been pretty quiet on my blog lately, life has become very hectic, the month has flown by, and I simply haven’t had time to check in on here. I Just returned from a wonderful day trip to Manchester, and my precious weekends have also been spent travelling to see friends around the country. Whilst I’ve loved every moment, I think the fatigue has really caught up with me now and I am glad to have made a few less plans over weekends in November and December.

I had a PET CT and MRI scan last week and I am anxiously awaiting the results in early November. Last time I found it difficult to be pleased with my results given I was made aware of two small ‘hot spots’ which appeared on my scan. My Oncologist, who has treated me for over nine years suggested there was no cause for any immediate concern, however I was really thrown by these small spots appearing on my scan! At the time I had been physically well and expected the results to continue to show no evidence of disease (NED), so when I found out I was caught off guard.

A mixture of a cold and burn out has descended and I don’t feel so well in myself as I did prior to my summer scan results, however this may also be because I’ve not been going to the gym much since I returned from Japan in September, and I know I’ve not been going to sleep as early as I should. I probably need to go back to basics, go to bed earlier and do my best to look after myself.

I’m all for the positive mantra and keep telling myself not to worry about the scan results, as ultimately it won’t chance anything, but there is something niggling at me that I can’t shift. I have been distracted since scan day and find myself drifting off into a negative thought cycle about what may be to come.

The waiting game is really stressful, and it doesn’t get any easier with time. I’ve lost count of the amount of times I’ve been in the oncology waiting room getting ready to speak to a Doctor about my results. I’ve normalised the situation in my head, but it’s really not normal to go thorough this cycle multiple times a year.

Last week I had both my scans within two days of each other which was very anxiety inducing. Once I’ve been cannualated having the scans is easy, it’s the waiting around on the day or for results weeks later that is the worst. I have an MRI scan on my head roughly every six months, as having had a brain tumour one can’t afford to take risks. Praying my noggin is still behaving itself almost 10 years on.

I am fed up of living scan to scan feeling unable to get on with my life, but this is my life now. I hope over time this will continue to get a little easier. By Christmas 2019 I will have been off treatment for a whole 12 months and that is a huge achievement. I will never get rid of the fear around scans, I would love to be able to get the results instantly rather than go through the painful waiting process.

Summer Scan Results

A month ago I had my second PET CT scan since adopting a surveillance approach to my treatment for stage 4 melanoma. Like last time, I had to wait almost a month to see my consultant for the results. Yesterday I saw my team in Leicester an am happy to report that for the most part all has remained stable, which is cause for a celebration.

Annoyingly, I have been told there are a couple of very small ‘hot spots’ which were present on my most recent PET CT scan, one in my arm and another at the back of my throat / nose.

My Oncologist suggested there was no cause for any immediate concern, which is great, however I’m a bit thrown by these small spots appearing on my scan! I feel physically well and expected the results to continue to show no evidence of disease (NED), so the fact this isn’t quite crystal clear means I’ve been caught off guard. I’ve been riding the NED wave for some time now, so I’m disappointed.

I was offered the option to be referred to an ENT specialist to investigate this further, but my Oncologist felt this unnecessarily so I decided to trust his judgment. I’m also still enjoying the freedom of having very few medical appointments and I’m not keen to start adding to the load again unless it’s 100% necessary.

A PET CT scan doesn’t diagnose cancer itself, so It is very likely that the hot spots might have been caused by other factors such as a blood test / injection or even a cold.

The current plan is to carry on without treatment and take a look at my next scan in a couple months and act then if there is any reason to. It’s feasible that these spots will have disappeared by then, and no further action will be needed, but it’s certainly freaked me out a bit. I guess this is the nature of being on ‘watch and wait’.

In other good news, I’ve been told that all being well we can discuss the possibility of getting my portacath removed once I’ve been off treatment for a year.

For the most part my glass remains more than half full, something I’ve been trying to tell myself over the last year or so. There are plenty of adventures planned before I have both an MRI and PET CT scan in October, so hopefully my mind will be occupied.

Dear 18-Year-Old Me

Within the blink of an eye another year has passed and I am almost 32! I am beyond grateful to have lived another year on this beautiful planet we call home. Who’d have thought I’d be happy about getting old?!  So far 2019 has been good to me, and my life has changed beyond recognition, having only stepped foot through the doors of Leicester Royal Infirmary a couple of times this year, for a PET CT scan and subsequent results. This is the stuff dreams are made of, and despite multiple daily reminders I am slowly getting used to being free from cancer treatment.

Over the last year I have been fortunate enough to travel a fair bit around America and Thailand; I also visited Cyprus in the autumn and have since been on a couple of city breaks Florence and Vienna, as well as various trips around the UK to Newcastle, Torquay, Nottingham and the Isle of Wight. Right now, it’s not all bad.

I’ve beaten the statistics in so many ways, I almost feel I don’t really deserve to be referred to as a stage 4 patient right now. Melanoma is being treated so differently to five years ago and currently I feel like I’ve been given a golden ticket and a chance of freedom.

Three years ago I was in hospital, having had surgery to remove a tumour from my bowel for the second time. I managed to get discharged the night before my birthday, but the celebrations passed me by that year. Five years ago I also spent my birthday in hospital, at the time I was admitted to St George’s Hospital in Tooting, South London for suspected appendicitis. It turned out to be my first bowel tumour, and I remained in hospital for ten days before being admitted to Leicester for emergency surgery. In July, once I’d recovered from the operation I began receiving Pembrolizumab in hospital every three weeks.

Who knows how the next year will go? At the moment it feels very promising, but nothing will ever be certain. With it also being Melanoma Awareness Month, I started to think what advice would I give to me pre cancer 18-year-old self if I could write them a letter about what was to come over the next 14 years.

Inspiration for this letter is taken from the 2011 video ‘Dear 16-Year-Old Me’ by the David Cornfield Melanoma Fund.

Dear 18-year-old me: A letter to my younger self.

Congratulations for making it this far! This is a big year; far bigger and more challenging than you will have ever known before. Some fantastic things will happen this year; you’ll pass your exams, your driving test (at last!) and go on a fun girls holiday. Despite this, you’re going to have a lot of shit to deal with other the next few years, so don’t sweat the small stuff.

When you hear the words ‘you have cancer’ and find out It’s stage 1 melanoma, please don’t panic. Its not nearly as bad as it seems (for now anyway). Melanoma is a type of skin cancer, It develops from skin cells called melanocytes. The mole you had removed from your neck was melanoma – A key piece of advice – don’t ever go to hospital appointments on your own again!

The next 12 months won’t work out the way you would have liked, you must remember not everyone’s path is the same. I know a gap year seems like the last thing you want right now, but it’ll all work out in the end. You didn’t want to go to university in Scotland anyway! Stop comparing yourself to your peers, it won’t help. All good things comes to those who wait, right?

The small scar from you mole removal will become a lot bigger, and more prominent. People will ask you about it; but don’t let it get to you. They won’t know how to react to your story and this won’t really change over the next decade. Embrace university life, believe it or not this part will be the calmest and least stressful of all.

You’ll find out you have stage 4 melanoma at 23, but you can handle it. You’re tougher than you think. It’s not an immediate death sentence despite what you’re told.

You will recover from major brain surgery, and lung surgery too. It’s a lot to take on, but your vision won’t be affected permanently, it’s always been bad anyway! Once you’ve had you lung tumour removed it’ll be seriously painful, but you’ll be able to breathe and walk properly again. A short post-surgery cropped hair cut will actually suit you. Thank Emma Watson for the hair cut inspiration!

Your life will be so so mentally draining and physically tough, but you will get there. Listen to your body and be kind to yourself.

Your friends won’t disown you because you are ill; it turns out this brings you closer together. You’ll still laugh with them like you did before cancer stole your freedom. You’re driving licence won’t be revoked forever, it’s not the end of the world. You will drive and have your own car again in a few years! Your friends will visit you when you are unwell and give you an excuse to get outside. Eventually, you will go back to work; you could’ve done with a bit more time off but you were being stubborn. Remember, part-time work is the way forward, don’t be fooled, only stupid people work full time!

Embrace your down time, you’re going to need it. Post brain surgery chronic fatigue will plague you for two years, but you will eventually get a handle on it. All will be relatively clam for the next few years and despite what it seems, your oncologist is capable of giving you good news as well as bad.

You will make a lot of new friends over the next few years who don’t care that you have cancer. It’s not what they see when they look at you, so please make sure to keep reminding yourself of that.

Like a boomerang, melanoma will come back again, this time in your bowels. Sadly it felt inevitable and you knew that. Try to embrace your scars, they tell you story of survival. You must remember that you cannot blame anyone or anything, it’s not your fault you have cancer. Anyone who tries to tell you differently can do one because they aren’t worth knowing.

When you start systemic treatment you will loose your hair, much of the confidence you’d built back up will be lost again. People will treat you differently now they can see you’re unwell. It won’t last forever, other treatments are been developed and believe it or not you’ll only wear a wig for two and a half years before you hair grows back. It sounds like a really long time, but just like your driving license it’s not forever.

You’ll feel close to death numerous times. You’ll write your will because you are sensible; cancer didn’t change that. You’ll have a lot of different treatments over the next four and a half years and by some miracle you’ll survive. You spend time  learning about treatments and how to pronounce words you’d never heard of  before. The NHS is incredible, be thankful. Always.

Eventually you’ll find the strength to tell you own story, and not feel so ashamed. You’ll write a blog, and be interviewed in magazines and on television to help raise awareness of skin cancer. Your story will inspire others so keep going. Talk to someone when you need to, its not a sign of failure or weakness. Just do what you need to do to get through the days / weeks / months and years living with this illness. Do all you can to raise awareness of melanoma and the important charities that have helped you along the way.

Stop worrying about what other people think and be yourself. You’ll make it to at least 32 and be alive for so many moments you thought you would miss. Tell people to cover up in the sun, repeat it over and over again and don’t stop; never ever apologies for it.

Just Live!

Melanoma Awareness Month

May is Melanoma Awareness Month, so I thought I would take an opportunity to write about the signs and symptoms. After all, it is the reason I write this blog in the first place.

For those who might not be aware, I was diagnosed with Stage 4 melanoma in September 2010 at the age of 23, having originally been diagnosed with Stage 1 melanoma five years earlier when I was 18. I am almost 32 and have been living with cancer the whole of my adult life. I initially began my blog to share my story and raise awareness, and since then I have appeared in numerous campaigns for cancer charities, featured in a BBC documentary A Time To Live and told my story in the Daily Mail’s You Magazine. I never have, and never will be a sun seeker, but my experience goes to show there is no discrimination when it comes to getting cancer.

When I was diagnosed with Stage 4 cancer, everything felt very out of my control and I felt all my independence was taken away from me. Looking on the bright side, I’ve now been living with my diagnosis for almost 9 years, and in some ways I am stronger than ever. The experience has shaped my whole life, so unsurprisingly I talk and write about it a lot. I struggle with the mental and physical of my diagnosis on a daily basis and are a constant reminder of what I have been through.

Melanoma is a type of cancer that develops in the cells (melanocytes) that produce melanin, the pigment that gives skin its natural colour. Melanin helps to protect the body from UV radiation from the sun. According to the NHS website melanoma is the fifth most common cancer in the UK and there are around 13,500 new cases of melanoma are diagnosed each year. Stats also suggest that more than 2,000 people die every year in the UK from advanced melanoma, which is higher than I expected, although I’ve always been told not to look at the numbers.

Melanoma is caused by skin cells that begin to develop abnormally. Exposure to ultraviolet (UV) light from the sun is thought to cause most melanomas, but there’s also evidence to suggest that some may result from sunbed exposure too. In 2018, Melanoma UK launched a petition for the ban on sunbeds in the UK after a successful ban of commercial sunbeds in Australia. The skin is the bodies largest organ so it’s important to take care of it as best we can. The charity also recommend regular self examinations can help lead to an early diagnosis and in turn increase chances of successful treatment.

The most common sign of melanoma is the appearance of a new mole or a change in an existing mole which can occur anywhere on the body. In my case, I had a suspicious mole removed form my neck in 2005. The NHS website has a handy guide on what to look out for which is detailed below.

ABCDE

  • Asymmetry – the two halves of the area may differ in shape
  • Border – the edges of the area may be irregular or blurred, and sometimes show notches
  • Colour – this may be uneven. Different shades of black, brown and pink may be seen
  • Diameter – most melanomas are at least 6mm in diameter. Report any change in size, shape or diameter to your doctor
  • Elevation or enlargement – some melanomas increase in size and may then become raised above the surface of the skin. Sometimes the mole can remain the same size and the area around or under it can appear to swell.

Follow Melanoma UK on twitter to find out more about Melanoma Awareness Month. It’s not ‘just’ skin cancer.

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 years, 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!

If I am honest I still can’t believe it, 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.

Learning To Love Myself

I feel like I am under a constant storm of clouds right now, just trying to stay dry whilst chaos ensues around me. I’ve finally caught the cold I seem to always be on the edge of and I also have a chest infection so I’m feeling a little sorry for myself this week. I’ve been spending as much time as possible in bed, where I finished this post I’ve been working on for the past four days. Still, I’ve got a weekend away to look forward to which I am very excited about! I just want to feel well; like when I wake up in the morning I can tackle the day ahead, rather than struggle to get out of bed. Hopefully a dose of antibiotics will do the trick!

It’s been a year since I wrote my blog post Singles Awareness Day. As I am sure we are all aware, today is February 14th aka Valentines Day; this is a day when everyone focuses on love, relationships, red roses and pink heart shape gifts. Perhaps, if you are like me it makes you focus on the lack of the above.

The suggestion is always that one needs to be happy in themselves before looking for love. It’ll probably always be a challenge for me to learn to be truly happy and love myself (scars and all) before I can let my barriers down and let anyone else in. I need to feel better from the inside out, I’ve neglected myself a lot over the years and this needs to change. It’s not going to happen over night, but if I’m not happy in myself, I’m certainly not going to let a man get close to me. If I don’t feel proud of my achievements, how will anyone else? Self love sounds very cheesy, but if I cannot see the positives in myself others around me won’t either.

At 31, if you’re not settled down It appears as a society we question it. I think others must think there is something wrong with me, but there is! I have incurable stage 4 cancer! I still have single friends, but increasingly couples are settling down, moving house and starting families. Days like Valentines Day serve as a constant reminder I’m not at the same stage in life. My successes (staying well, managing to work full time) are not the same as my peers, these are a given for 90% of those around me, they are just ‘the norm’ for others. I’ve been told multiple times over the years that I am ‘not the norm’ and boy do I feel that now!

It’s time to stop being so harsh on myself, to stop judging; and stop putting myself under the microscope of never ending scrutiny. There is no point in comparing my life to that of my peers, we aren’t in the same place, and it’s not a competition.

It would be nice to feel like a relationship could be possible one day. As I always say, I would’ve liked the choice, but I feel its been taken away from me with my diagnosis. I know it’s even more unlikely if I don’t make some changes to my attitude. I’d admire the ‘like it lump it’ and ‘this is me’ attitudes of other cancer patients I follow on social media, but it’s just not me.

Perhaps I’ve met a man I could be with, but I’ve been too busy keeping barriers up and focussing on my health that I haven’t even noticed? The idea having a relationship still feels so unlikely; like a fictional version of my life that will never really play out into reality. Who knows! Despite how positive things are looking In terms of my treatment I feel deep down no one wants to be with a terminal cancer patient. In the back of my mind I feel I don’t deserve it because my cancer status doesn’t make me a worthy candidate.

To be honest, I wouldn’t even know where to begin. For the past nine years I’ve put my body through so much; including multiple operations and some brutal treatment options which have multiple side effects. Each leave their own harsh physical and mental scars and often it is too much to deal with.

In order to move forward I need to accept what I’ve been through, and hopefully learn to be happy in myself first and foremost. I am a huge worrier, I am am not sure I can be truly happy and content in myself when I often feel my body is trying to kill me.

Every day I panic things will take a bad turn again. Cancer has magnified fears I didn’t have before, however It’s goes without saying that it has also highlighted the strength I can find within to keep going. I must stop beating myself up over my diagnosis and worrying I could have changed things. In this instance it doesn’t always feel like time is a healer!

Here’s to waking up tomorrow and feeling more over the weather than under it! And a happy goodbye to the Valentines gifts and paraphernalia for another year.

“Self-love is not selfish. You cannot truly love another until you know how to love yourself”

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.

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 highs (trips of a lifetime, new family members) and some 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!