Cycle 2, Day 15 (pre-scan result)

The original purpose of this blog was to use it purely to update people on appointments and how I was feeling. It was useful because of the very real time-sapping impact of ‘cancer admin’. Having so many friends and relatives checking up on me with well-meaning messages and to get an update, led to me answering the same questions a hundred times and spending all my time on whatsapp/ Facebook. Of course, it’s lovely to receive these messages, but it became quite a chore. The blog has definitely served a purpose, even if I do feel like a bit of a dick when I receive messages from someone saying ‘how are you doing mate’ and I just send them a link to the website as a response. I think people have been quite understanding though. The content has been kept very factual and to the point for this reason, and therefore it is probably a pretty dry read and lacking in personality.

From the time of my diagnosis I had started writing separately about my thoughts and feelings about what was going on, for my own benefit. I found writing to be cathartic and being able to put my thoughts into words extremely helpful. During this period I write a few posts that turned into full blown essays, and came to the decision that at some point I would publish these as a separate blog. I decided it would be a good thing to make these posts public so that if someone stumbled across it who was going through something similar (i.e. adrenal cancer), they had a bit more of an idea what to expect. As it’s a very rare cancer and I found no personal experiences online when I googled it, whereas for other cancers a million blogs exist, I thought that even if it helps one person then it would be beneficial and, selfishly, it also gives me a bit of satisfaction and focus. Another advantage is that it would give my friends and family a clearer idea of where I am mentally. So two blogs would exist - the first staying as a purely medical update, the second more documenting the emotional side of things.

However, I’ve not written any personal entries since I started chemo. There are a few reasons for this. Firstly, the mix of having a constant stream of visitors (obviously a huge positive and the reason why the last 6 weeks of chemo has been quite enjoyable) and the fatigue aspect from the chemo (less of a positive) has meant I just haven’t had the time. Secondly, I’ve been mentally in a much better place than I was in the initial whirlwind of the diagnosis and therefore found less of a need to use writing as an outlet. This is pretty typical, and I found it the same with meditation – you use it as a crutch when you really require it, but when you are feeling better the habit falls by the wayside, even though it’s important to continue it. The result of this is that I haven’t written anything in the last 6 weeks given my mental state, and the idea of the ‘non-medical’ blog hasn’t happened.  

I’ve decided therefore to just combine the two blogs. I will use this blog both as a way of updating people with appointments and with how I’m feeling in regard to side effects, but also be a bit more open with how I’m dealing with things and my thoughts on the situation, sometimes getting a bit philosophical. The result of this may be that it’s a bit more long-winded, overwrought and self-indulgent, and not necessarily any less dry which is, unfortunately, just a result of my lack of ability as a writer. However, that’s how things are going to be. I may even post the original long entries I wrote to pad out the history of the blog so it doesn’t just change from a medical blog to a more in depth one. It also means this post is going to be rather long. Sorry.

So, first, an update of where I’m at today. I had a scan yesterday which should give an indication of whether the chemotherapy is working (i.e. whether the tumour is reducing in size). I am meeting with my oncologist tomorrow afternoon to go through the results and talk about next steps. If the tumour is reducing in size, this is objectively a good thing and the idea would be to continue with the current treatment.  If the tumour is staying the same size – known as ‘stable disease’ – or if it has grown, then we will discuss other options (not necessarily deciding on anything tomorrow). One option is to continue with the current chemo regime and hope the mitotane level rising in my blood has more of an impact and therefore going forward is more effective. Other options would be to try other known chemo regimes (which statistically aren’t that effective), or to try a more experimental clinical trial. Finally, I could just simply accept the situation and stop treatment, and adapt a more palliative care approach.

The nerves I’m feeling about tomorrow’s meeting is known in the cancer world as ‘scanxiety’. Ongoing uncertainty and lack of control really is the horrible, unexpected impact of being diagnosed with cancer. I think I’ve been pretty good at not thinking about high level, existential things during the chemo period. This is partly due to keeping busy, and helped along by the antidepressant starting to take effect, but also because I’ve been able to see it as a very clearly defined period of my life that ‘is what is it is’. The advantage of this Is stress release. Any symptoms I’ve had I’ve been able to just attribute to the chemo as opposed to worrying whether or not it means the cancer is developing and I’m closer to death than I realise. Any time spent in bed I’ve been able to justify as letting me body recover without worrying that I’m wasting my time and instead should be forcing myself out into the world to try and take advantage of life whilst I still can, because of the uncertainty of whether my current physical state is actually the best I’ll ever feel again and therefore feeling I need to be more resilient. It has felt like a holiday from the mental turmoil I was going through beforehand - the lack of having any decisions to make, and just to be able to focus on the day to day of dealing with side effects, has been pretty liberating.

Obviously, the ideal scenario is that the chemo is working and I continue with it. But the reason I’m dreading the alternative is not just because its means the cancer has advanced, but also because it threatens to throw me back into the mental anguish of uncertainty and being forced to make what could turn out to be life and death decisions. I don’t know how I’m going to feel after the meeting tomorrow, but I really hope it doesn’t push me back into the headspace of constantly questioning my life and whether I’m spending my time in the best possible way. My therapist has suggested that the benefit I have felt during the chemo period is a sign that regardless of the result, I should actively try to avoid thinking about ‘big picture things’ as all this does it is create stress. I should instead just focus on the day to day. However, I’m worried its not as simple as that and I won’t get a choice. The chemo has allowed me to look only as far as from Cycle 1, Day 1 until ‘scan day’, and see that as a set time period, and therefore not worry too much if I have a quiet weekend or spend a day feeling unwell. However, if the result tomorrow is, for example, that I only have 4 months left, it is very hard not to wake up every morning and think ‘what do I really want to today’, or to go to bed every night and wonder whether or not it’s been spent in the best possible way. This isn’t healthy but I don’t think I’ll get that much choice, as it’s just how my brain works. Fingers crossed that, in that scenario, I have a level of acceptance and actually feel much less stress than I did before.

In regard to symptoms from the last weeks, its been quite rough, but I should be quite grateful really that its not been worse. The primarily thing has still been fatigue, which I think is heavier in this cycle. This is completely expected, as it accumulates over time. I’ve still been pretty active, probably more so than last month, leaving the flat every day to get some fresh air. Other than the probably incorrect decision to venture to the therapist at St Paul’s day 8 last month, I probably didn’t do anything big until day 14 in cycle 1, whereas this month during the second week I went to central London a couple of times and spent the weekend walking around Hampstead Heath. So I feel that the additional fatigue I’ve felt is maybe offset by the fact I’ve been more active. I’ve definitely felt the need to rest and nap more, and often found my eyes closing whilst reading during late afternoon (Derren Brown’s latest book is particularly dense and dry) and then woken up at 8pm feeling groggy and more out of it than before. Fatigue management is an ongoing learning experience. I’ve always been a very active person and not been the type to get home from work and spend 5 hours binge watching Netflix, so being in a position to do that now has very few benefits to me, and leaves me feeling quite frustrated, shite and generally a bit pathetic. However, fatigue is fatigue and whilst very real and debilitating, leaves me in no physical pain and I’m very grateful about the lack of other side effects. I’ve still (thankfully) had no nausea, and other issues have been intermittent and minimal such as dry mouth, short bouts of tinnitus lasting a few minutes, food tasting very weird and unsatisfying, a general body ‘aching’ and a slightly dodgy stomach. Whereas last month could be most easily compared to a hangover, this month is more of a comedown – the prevailing inability to get comfortable, to be unable to focus on anything, and generally having a low mood. I woke up at 2am on Sunday morning feeling truly awful without being unable to really articulate why – a mixture of tiredness, hunger, aching and just general malaise – but it passed after a couple of hours. It’s always useful to remember during the worst times that they will pass and that it could be a matter of minutes until you feel okay again. In this case, once I had forced some food down me, I slept like a log and woke up at 11am feeling much better.

Dizziness, so far, has been less of an issue this cycle. I have no idea why this would be but I’m very happy about it. It has instead been replaced by irritability. During the first half of last week every single thing seemed to annoy me. My senses were heightened so smells, sounds, and touch all were very strong and negative and I treated them like they were attacks on me personally. I also got extremely irritable with people. I think I deleted about 40 people from Facebook with their indiscretions ranging from having annoying faces, posting about pointless shit, or simply just posting too much. I left the room at one point because the guy on TV was annoyingly camp and I couldn’t cope with his mannerisms. Seeing 40 unread WhatsApp messages filled me with an even larger sense of apprehension than normal. My sister and friends have also been bugging me which leaves me the additional issue of feeling guilty that all their good intentions are just leaving me annoyed at them and I’m not acting appreciative. I think they are quite understanding though, and I also am quite good at not completely flying off the handle, so hopefully no one has been that insulted. 

I want to stress again that, with Week 2 of the cycle being seen as the worst in terms of side effects, I’m grateful that things have not been worse than they have been. This is being written in an attempt to almost convince myself of this as well as actually believing it, because when I am feeling awful there doesn’t feel like there is a lot to be grateful for. But taking a step back, a stoic approach does make me put things into perspective and make me realise the situation really isn’t that bad. I hope that now I’m in week 3 there is a steady improvement in how I feel. Although I accept it will not be perfectly linear, my experience from Cycle 1 is that there is a steady improvement. The worst of the side effects have (hopefully) passed with fatigue being the lingering one that I have to manage.

However, Week 3 is also neutropenia week. This basically means that (due to the chemo) my white blood cell count is very low. To put this in numerical terms, the lower end of the ‘healthy’ range for white blood cells (I believe) is around 4000, whereas last cycle during week 3 I had a count of 500. This results in a higher risk of catching infections, as well as the body being a lot worse at being able to fight one off. The general advice from the nurses is to avoid the tube in rush hour and avoid busy places to minimise risk, wash hands more frequently and use anti-bac, change food habits to avoid high risk food etc. They also say if I develop any symptoms of illness, however minimal e.g. high temperature, a cough, or turning pale, I should alert the hospital and potentially get myself to A&E as simply catching the common cold could be life threatening and the hospital can rush me through and put me on antibiotics to counter it.

Hearing this is quite alarming and the temptation is to wrap myself in cotton wool and not leave the flat. However, as I’ve said, side effects have improved and I feel more up to doing stuff. This leaves me in a bit of a limbo in terms of deciding what I should be doing. Should I go to the gig I feel physically up for, or avoid it because of the huge mass of people increasing the risk of hospitalisation? Last month I was quite casual about it. I went out for meals in the evening during the week, went to a busy gig on the Friday night, to a festival on the Saturday and then even jumped into the open water of Hampstead Heath on the first day of Week 4. I seemed to do alright, but I’m wary of being arrogant and assuming this is due to anything other than good fortune. Therefore, I don’t really know what to do this week. I’ve been considering getting up to the Fringe in Edinburgh as I’ve never been but I didn’t know whether that’s a good idea. I will discuss it with the nurses and oncologists tomorrow and get their opinion and then, I guess, have to make one of the dreaded choices I’ve been so happy to avoid.

Today was an example of the limbo feeling.  I woke up without any real side effects but tired and drained and without anything really in the diary, and therefore feeling a bit empty and low. My friend text me and I ended up being quite productive in taking back a load of clothes in central London (not going as far as wearing an Asian style face mask but being careful to avoid sitting by anyone obviously ill) and chilling out with him afterwards. I ended the evening sat on a bench in front of the river with the sun setting, meditating to the sound of the Thames hitting the shore. A nice, calming set up before coming home to write this thesis.

I love London