September Sadness

This month has gone very quickly, having been away on an exciting work trip to Japan I am now back in the real world. My three year blogging anniversary took place whilst I was away. The past year has been the most significant as I stopped taking Immunotherapy drug Pembrolizumab, having had my infusion in December 2018 and my last major surgery during the summer of 2016.

September is also very significant as it marks exactly 14 years since I was initially diagnosed with stage 1 melanoma when I was 18 years old. I have now been living as a stage 4 patient for almost 9 years, with the end of the next marking the date I was told my diagnosis was now Stage 4 cancer and I had to have two major operations to remove a lung tumour and brain tumour which had been growing inside me during my final year at University.

September is a month full of various triggers and cancer related anniversaries, when I was diagnosed in 2010 I thought I may not make it to 24 or 25, and now I’m 32! I woke up this morning, or in the middle of the night with it being 4am, still jet lagged from my long flight home. My work trip and travelling bubble has well and truly burst. For me, September is full on sadness and so many bad memories which have changed the course of my life forever. In this case i’m not sure if the memories fade or that time heals old wounds, it really doesn’t feel like it today!My wounds are sore and as raw as ever right now.

I try my best not to think about more distant future, but no matter how much time passes I still feel like I am staring down the barrel of a loaded gun ever day, being away from London and my ‘normal’ life allows me to switch off, and there is a sense hope. Travelling home I did start to think about my next long haul trip to America in 2020, and I am trying not to panic that something dreadful will happen between now and then which means I won’t be able to go.

I am due a PET CT scan within the next month, and am awaiting a date for an MRI scan too, and will get the results at the start of November. I am starting to worry now that I know the date, particularly with the recent news about the hot spots of my last scan, and am full of misery and fear about what could be.

I’ve only been home five minutes but my mind has started experiencing certain triggers that are very distressing. This morning I discovered some hair in the plug hole and I immediately had a flashback from when my hair started falling out about five years ago. September is a month when I think about my diagnosis and the impact it has on my life even more.

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.

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.