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.

Post-traumatic Stress Disorder

A couple of weeks ago I had my second PET CT scan since adopting a ‘surveillance’ approach to my stage 4 cancer in January this year. I am now playing the long waiting game and am not due to see my consultant for another two weeks.

I have so many reservations about this, but I know deep down (or at least I think I do!) that if there were any hot spots coming up on my PET CT scan I would be called in earlier to see my oncologist. I’m now an outpatient, so currently not seeing my oncologist and his team nearly half as much as I have done in previous years. It feels strange to have let go of the stability of having the hospital on speed dial and trust that the people who have been keeping me alive for the past decade are still doing the right thing.

I almost feel abandoned now that my appointments are few and far between. It feels like trying to ride a bike without stabilisers for the first time without any instructions. The anxiety and fear around this will never leave me, but hope in time it’s easier to cope with. It’s become apparent to me that I am suffering from some PTSD, aka post-traumatic stress disorder since I found out I had stage 4 cancer.

I haven’t officially been diagnosed, but I think that most of people who have a cancer diagnosis must suffer from PTSD at some point; life changing events such as surgery and chemotherapy are bound to have an effect. Some of the side effects induced by particular treatments might lessen in time and become less severe, but even the diagnosis itself can be earth-shattering and seems like the perfect place for PTSD fester. I know I have suffered with this for a while, even prior to my Immunotherapy finishing. Thanks cancer for giving me something else to deal with!

I am still in disbelief that I am not on treatment right now. I’ve had trouble coming to terms with this, even though I hoped and prayed for it for years it doesn’t feel like I expected it to. It would seem that cancer is the gift that keeps on giving!

I’ve been open on honest on this blog about my struggles with anxiety and depression over the years, and have only come to recognise this fully more recently. I kept kidding myself that I should be grateful my cancer is treatable despite being stage 4. Living with cancer, palliative or not is one long nightmare!

Over the years I’ve noticed the increasing number of PTSD triggers I have that I can’t seem to control. I’m never going to forget I have melanoma; but some sights, smells and sounds remind me of the multiple hospital trips and specific events such as major operations. My mind is constantly taking me back to moments that will be etched on my memory forever more. Certain triggers cause me to suffer vivid flashbacks that are often deeply distressing and sad. Not a day goes by that I don’t think about my diagnosis and the impact it has on my life.

There are so many misconceptions when it comes to PTSD. People reading this might suggest that I should move on and try to get over what has happened. But I’ve suffering from anxiety and depression around my illness for so long and having PTSD isn’t a choice. I can’t ‘just get over it’ when it impacts my life so much.

Back in 2010 when I got told I had brain and lung tumours I suffered emotionally in private, I wasn’t ‘out’ on social media like I am today. I deleted Facebook for almost a year and didn’t use any other social media platforms back then. Over time I’ve tried to stop feeling guilty about the way I feel as I know have been through a lot, it’s pointless and detrimental to me to pretend I haven’t and that its not been a struggle.

Talking about my situation helps immensity, but in the past I have often kept things quite from family and friends because in some ways only other people who have had cancer can fully understand. I don’t want to make others sad or reminded that they could be next, so for a long time I suffered in silence and put on a front.

Sadly a life with cancer doesn’t end when treatment ends. I can’t wait to gt my scan results out of the way and hopefully my PTSD symptoms will die down for a while and I’ll have some space to breathe.

The Beauty Of Friendship

I’ve always known how important my friends are, but the last few weeks have highlighted just how lucky I am to have a solid cohort of friends behind me.

I am lucky to have spent last weekend with some of my oldest friends, and no matter how much times passes our friendships remain intact. We may not see each other often, but we are still there for each other in times of need (thank goodness for mobile phones and what’s app).

The vast majority of my friends are well and truly settle down and some have children too. I am very aware I’m a fair few stages behind when it comes to these matters and I always count my cancer diagnosis as part of the reason for this. It’s shaped who I am today, much like my friends own experiences, but ultimately we still have a close bond.

The great thing about our friendship is that we love and respect each other, even if we don’t always have the same opinions. We don’t all have the same interests either; I love theatre, eating out, and travelling, but I am not a fan of Love Island, and it doesn’t matter. As teenagers we had similar interests, such as being old enough to go out in town and go drinking for the first time, it was fun at the time but as adults we embrace our differences. I prefer to stay in and watch Netflix than go out to a bar, and that’s ok too. We’ve learnt to embrace our differences, and it’s probably one of the reasons we have stayed friends, each to their own after all! We are all individuals however together we work. I am lucky to have many friends from my school days, some that have stayed in the midlands and other who live close by in London. I was also lucky to find some wonderful friends and University too, as well as in the various jobs I’ve done since graduating.

In the last month I have caught up with two friends who have visited the UK from Australia, one from Japan and two from America. These are not people who are in my life of a daily basis, and I met them and different times during my life, but despite the distance they are frequently in my thoughts. We communicate as often as we can, sending long updates about life via what’s app it that occasional Skype call.

I often wonder where in the world I would be be without these people? Nothing compares friends getting together for a good catch up full of laughter, and last weekend was no exception.

True friends are those you can be 100% honest with, and they still like you anyway despite what they know. These friends are people you can sit in silence with for hours and it not be awkward. These are the ones who will be with you during the best and worst times and lift you up when you are in a bad place. I’ve had my fair share of rough rides and I am eternally grateful to those people.

Some friends are relatively new ones, but they are just as important to me.  During an average week I spend more of my time and work and socialising with friends than seeing family which makes friendship (and of course family) so key to my overall happiness. I feel fortunate that I have those I can confide in, act like counsellors, and overall support systems. I am always trying my best to be a good friend in return.

Whilst I await my next PET CT scan results I am forever grateful to my wonderful friends for keeping me sane.

What A Difference A Day Makes

I had a very busy weekend, with a much anticipated theatre trip to see both parts of Harry Potter and The Cursed Child followed by a day trip to West Sussex on Sunday to walk from Amberley to Arundel with some friends.

I’ve been pretty busy over the past few weeks, including during the weekends, and felt like it all came to a head yesterday after I had my PET CT scan in Leicester. My body felt exhausted; I guess It was a mixture of aching from the walk, lack of sleep, lack of food as I was only allowed water prior to the scan, and a recently shoulder injury. Luckily, desipte not being able to be cannulated via my portacath the scan went ahead as planned.

I got worked up and anxious when I was told a nurse wasn’t available to cannulate me via my portacath. Previously I had been sent away from a PET CT scan after two unsuccessful attempts to put a cannula in my arm and had to come back another day for the scan to take place. At the time it was very distressing as I travelled to Leicester on my own for the scan, thinking I knew what I was letting myself in for. I’ve learnt that with cancer I never know what I am letting myself in for!

Over the past couple of years my portacath has been my saviour and I’ve not been to a scan on my own since. Fortunately, one of the radiographers managed to put a cannula in my arm on the first attempt so the radioactive tracer could be injected into my bloodstream. Considering how many times my veins have failed me I was pretty impressed. Now I have to arrange another visit to the chemotherapy suite for my portacath to be flushed (never a dull day!)

After the initial hiccup my scan went smoothly, I did my usual hour long wait once I’d had the tracer injected and then spent 45 minutes being scanned form head to toe. I am due to see my consultant for the results in the next month. Each scan comes with its own level of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago. As the months pass and I learn to live on my new ‘watch and wait’ routine I can’t help but feel like my world could fall apart again at any moment.

I felt really unwell after my scan on Monday and had to go back to bed when I returned to my mums house. I slept solidly for almost three hours, and it just goes to show what a difference a day makes.

Twenty-four hours earlier I was waking through fields with my friends, feeling energised without much worry, and within such a short space of time I felt like an invalid. When I tried to get out of my dads car when I got back I felt like I’d suddenly aged 40 years – walking seemed so difficult and I felt sick and exhausted. All I’d done is lay there in the scanner but it took so much out of me! It felt as though I’d just come home from treatment and my body was drained of energy.

I don’t often share the moments when I physically struggle online, because I want to focus on the positives, but also because ‘dear diary, I was exhausted so spent the day in bed’ doesn’t have the same ring to it. It hit me hard, but I need to keep my head up and keep going.

That ever changing 24 hour period was a harsh reminder of how fragile life with cancer can be. I am slowly beginning to feel better, after some research, Dr Google suggests I might have a trapped nerve which is causing shoulder and neck pain, so have booked in for some more acupuncture in the hope that the symptoms will be alleviated. I know I should really google me symptoms either!

A cynical voice in the back of my mind is linking the pain to disease progression, but I don’t want that negative energy to impact me. I haven’t had any other worrying symptoms over the last few months. Another part of me thinks my oncology team would ensure I get the results much quicker if there were any red flags from their end.

The next few weeks are going to be testing, and I really hope Scanxiety doesn’t kick in. It’ll be easier once I know where I stand so I can breath again.

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.

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.