This is a Spinal Tap

Welcome to my personal blog. Here I continue to document some of the adventures that a cancer diagnosis has allowed me to experience. New readers are directed here for part one of that adventure.

In his 1984 mockumentary “This is Spinal Tap”, director Rob Reiner satirized the world of heavy rock and metal following the band Spinal Tap around the U.S. as they promoted their album “Smell the Glove” down endless backstage corridors and through a series of expiring drummers.

In his 2012 personal experience “This is a spinal tap”, human Robbie M. Cooper had recently begun chemotherapy and was now in Aberdeen Royal Infirmary following the sudden appearance of a number of symptoms which were concerning for someone with a compromised immune system (high temperature, vomiting, sweating, incoherent speech, redness and inflammation in the legs). To rule out meningitis as the cause of the symptoms the medical team decided to perform a spinal tap to extract and analyse some cerebrospinal fluid. Fortunately, having never had a spinal tap before, repeated uses of the words ‘spinal tap’ served only to cause replays of various scenes from the film in Cooper’s mind. Those pleasant associations were soon to be updated, however, by the fact that a man in a nearby bed was also to be given a spinal tap and he was next in the queue. Although various methods were employed to try and maintain the patient’s privacy during the procedure, they had limited efficacy. In short, Cooper (that’s me) could see and hear enough detail to have a very firm impression of what it might be like to have a spinal tap of his very own.

In this example the skin on the lower back is removed to provide easier access for the medical professional.

It goes something like this: the aim of the procedure is first calmly explained to the patient. Then it is pointed out that some patients may experience a certain amount of discomfort during the procedure. OK? OK. The patient is then told that local anaesthesia is provided to alleviate the pain so really the hope is he shouldn’t feel a thing. OK? OK. The patient is then asked to lie on his side and local anaesthesia is injected into the lower back, “Sharp scratch OK? OK”. Then a rather larger needle than the last is inserted in between particular vertebrae in the lower back. OK?

It is at this point that the patient started screaming (and I choose the word ‘screaming’ carefully). Screaming volume? Eleven. After two more attempts at inserting the needle into the spinal column and two more pained vocalisations up at eleven the man pleads for them to stop, which they do reluctantly having not completed their procedure. What I learnt from watching this unfortunate man having a spinal tap was that I didn’t want to be next in line to have a spinal tap!

Question: Why don’t you just make ten louder and make ten be the top number and make that a little louder?
Answer: These go to eleven.

And then it was my turn. In the event, perhaps because they had already taken out all of their frustration on the last guy, I genuinely didn’t feel a thing. The fluid was removed and I suffered no ill effects. That is until a day later when having shaken off the aforementioned symptoms (I’ll come back to that below) and been given the all clear at the hospital, driving back to my mother’s home in Aberdeenshire I developed a severe headache the like of which I had not previously experienced. Another day in bed with this headache and a new doctor diagnoses the cause to be the spinal tap itself: in a minority of lucky patients the cerebrospinal fluid can continue to leak out of the extraction site causing what is known as a low-pressure headache, the remedy being to lie completely flat on your back and consume high quantities of caffeine (in my case for a further five days).

This episode took place in early December, just before the beginning of my third, and what would turn out to be my final (for now), cycle of chemotherapy. I am in the fortunate position that I have cancer on the surface of my skin so that a visual inspection of the area can determine whether or not the drugs were being effective. They weren’t.  Not only that, the drugs (Gemcytibine and Cysplatin) made me nauseous, fatigued and increasingly despondent as the sessions went on. I can report that chemotherapy was a struggle. This is even despite my claim at the end of my last blog post that I intended to remain “unremittingly, and unapologetically positive.” I really tried.

The lack of progress with the chemotherapy meant a return to the electron therapy that I also mentioned in blog post 1. Here the principle is to fire electrons at the skin and the cancer cells should be more compromised by these electrons than the regular cells.  In my case, despite having early positive signs that this technique would deliver some good, repeated sessions in January and early February did little to help.

On top of the disappointing response to the treatments I was getting increasingly frequent episodes of thrombophlebitis. This is what the medical professionals finally decided was responsible for my hospital admission that led to the spinal tap described above. Basically, because of the cancer, my body’s immune system is all ‘out of whack’ and this leads me to get the kind of systemic response I described above along with the main symptom of inflammation in the veineous system of my legs which lasts 5-6 days per episode.

Spending time in hospital I learnt you can fight cancer with your fists.

During another particularly difficult episode of phlebitis I was hospitalised and spent my first nights in an actual cancer ward. If you are ever feeling too positive about life and want to bring yourself down a little then I warmly recommend a few nights in a cancer ward.  In my room there were four men including myself. The three others were all avid football fans and since I have no interest in football (a fact that seemed to genuinely shock one of the men) I was quickly deemed unworthy of inclusion in all general chat (perhaps also evidence that academics have poor social skills). That is until the cancer chat started. One man in particular (an older gentleman with late stage oesophageal cancer) was very keen to know everyone’s story and give his opinion. For example he told the man in the bed next to me (a man of about 60 years with newly discovered but advanced prostate cancer) that if he was going to have radiotherapy (which he was), he would have to have (and forgive my attempt at an accent)…”you ken that bit that hangs doon fae the back of your throat? Aye well, first they strip that right oot, nae messing”. The receipt of this information clearly caused Mr Prostate Cancer a certain amount of distress. I felt it was important to interject at this point to state that due to the very different nature and locations of the two cancers, it was highly unlikely that Mr Prostate Cancer would have to have that bit removed from the back of his throat.  For my troubles I was threatened with a punch on the nose if I continued to suggest Mr Oesophageal Cancer was a liar. Even though I knew that this was a fight I could actually win if I wanted to ‘step up’, not least because Mr Oesophageal Cancer was bed-bound, I instead decided to reject the physical conflict and calmly reassured Mr Prostate Cancer that he should talk to his Doctor if he was worried.

This event highlights the degree to which fear and uncertainty are huge parts of a cancer diagnosis. As I touched on in my first blog, one of the issues that can be difficult to get your head around is prognosis: that is the issue of how the cancer is going to change your future. I am now six months on from my first blog and I know now that the rare and aggressive cancer I am dealing with (anal adenocarcinoma) is resistant to all the therapies that have so far been thrown at it (laser surgery, chemotherapy, electron therapy). I know that it is continuing to spread on my skin, and that in order to get the increasing levels of pain I was experiencing under control I spent three weeks in Edinburgh’s wonderful Marie Curie Hospice. Overall, you could say it is becoming more challenging.

On the positive side I came out of the hospice with much better pain control. Furthermore, and really importantly, my most recent scan (three weeks ago) again showed no signs of cancer in my internal organs. So, although it still spreads, it has not yet got it’s hooks into my vitals, as far as we can see.

After the clear scan I was given two choices in terms of active treatment: 1) A different and more aggressive chemotherapy regime with a modest chance of making any difference given the lack of success from the first choice chemotherapy (remember, given the rare nature of the disease all choices are best guesses from the doctors). Or 2) Aggressive surgery to remove as much of the diseased skin as possible and replace it with skin grafts in an operation that was described to me as ‘heroic’. There is no anticipation that this will remove all the cancer, but the hope would be that taking the bulk of the cancer away should reduce both pain, and episodes of thrombophlebitis.

Decisions concerning treatment can be challenging. Either direction represents a battle.

Given the previous negative chemotherapy experience and the fact that the surgery feels more proactive I have decided to go for the surgical option. And so tonight (Tuesday 7th May) I am being admitted for an operation which will take place tomorrow. I expect to be in hospital for at least two weeks. I put my trust in the hands of the surgeons.

The last few things: First, if you want to learn more about cancer then I thoroughly recommend the Macmillan website. There is so much excellent information there. Second, in my next blog I hope to give details of a series of concerts that will be taking place across Scotland in September in order to raise money for the Marie Curie Hospice. Finally, if you want to personally give me and my wife some financial support during this time my good friend Jon set up a site where that is possible. I want to give an enormous thanks to all the people who have already so generously donated. It has made life a little bit easier without so much financial stress. I’ll see you all on the other side of the surgery.

Robbie

Banal Cancer

• In this first post I talk openly about my cancer diagnosis and some of the effects this diagnosis has had on my life. It is a personal account that I share in the hope that friends, family and interested strangers might better understand what I have gone through and how I have tried to fight the good fight against the behemoth that is cancer.

Following your inevitable death you may find something like this under your head flesh.

Let’s talk about death, baby. Life expectancy in most parts of the world is now higher than it has ever been. Even so, and despite tremendous advances in medical science over the last few hundred years, the chances of you dying at some point in your life still sits at around 100%. Yes, like it or not, you are going to die (although see here). What is uncertain for most of us is how that death will come. Will it be sudden and unexpected, like a surprise encounter with a NATO bomb while you are going about your business? Or will it take the form of a disease that slowly takes your health away from you?  One such disease is cancer.

This week marks one year since I was diagnosed with cancer. If you had told me that one day I was going to be diagnosed with cancer I would tell you that is not a bad prediction. According to Cancer Research UK people living in Britain have a lifetime risk of being diagnosed with cancer of around 40%. In other words, 4 out of every 10 people will have the misfortune of  encountering cancer first-hand at some stage in their lives. What I never expected, however, was that at the age of 34 and being otherwise very fit and healthy, I would develop a very rare and little understood cancer (anal adenocarcinoma) and that the diagnosis would be delivered over the phone while I was eating a cheese scone at Britain’s best motorway service station. Up until that moment (and on numerous occasions by numerous doctors) I had been told that I was simply suffering from an acute case of haemorrhoids, so I had nothing to worry about. This news changed that.

A Cheese Scone

One of the first challenges for me was to try and make some sense out of this news. When I asked the consultant why I might have developed the cancer, he had no response; other than to say that I did not fit into any of the risk groups (no history of disease or tomfoolery in the region) and so the cause is entirely unknown. The shit had just happened.

But why me? To paraphrase the late Christopher Hitchens who died recently of esophageal cancer, rather than ask “Why me?”, a better question is “Why not?’. Why not indeed! Bad things happen to people all the time. The question then becomes what are you going to do about your situation?

It is reported that seven times Tour de France winner and intelligent rule bender Lance Armstrong said “Cancer is the best thing that ever happened to me”. While it is too early in my cancer journey for me to be able to echo this sentiment, the positivity he emanates is very important. There is clear evidence showing that a positive mental attitude is consistent with better health outcomes. In other words, positive thinking is not only mentally good for you, but physically good for you too.

This man has not been ill in 15 years

When I was first diagnosed my attitude was that it was not going to affect my life. I knew that if the medical professionals could fully remove the cancer then I could expect to live a long time. So, I left it in the hands of the surgeons and continued working, thinking of the cancer as little more than a nuisance. Following further tests, however, it became apparent that in order to try and stem the spread of the disease I would need to have an abdominoperineal resection. I am not afraid to admit that this brought a tear or two to my eyes.

This example illustrates the difficulty inherent in keeping a positive mental attitude at such a time. By it’s very nature, a surgical intervention of this type is a pretty traumatic experience and when you have this looming over you it could be easy to let it dominate your thoughts. Sometimes it is close to impossible to be simply, ‘positive’ about everything. What you can do, however, is distract yourself, take charge of your own attitude, and direct your attention elsewhere.  By coincidence it was at about the same time that I was invited to try stand-up comedy for the first time through an organisation called Bright Club. I reasoned that my desire to not completely flop in front of a live audience would act as a distraction to all the arrangements for the surgery going on in the background. So, a week before I was due to have my innards rewired, I got up and had a go (see here for video evidence).

Comedy organised by Bright Club

As it turned out, my attitude of just ignoring the cancer and assuming that it would go away couldn’t last for very long. The surgery and accompanying pathology reports showed that the cancer had invaded my body more dramatically than first feared. One of the ways that cancer can spread around the body is through the lymphatic system. Once the cancer gets into the lymphatic system it can, from there, make it’s merry way to various major organs. My pathology report showed that of the 22 lymph nodes removed as a pre-emptive strike, cancer was already in 17 of them. Again, a shock. On the positive side, at least these were now out of my body!

In the meantime,  I started developing lumps on the skin around my groin. Three independent doctors told me that these were ingrowing hairs and therefore nothing to worry about. They turned out to be wrong. So in my case, the cancer spread from the end of my digestive tract both internally (through the lymph nodes) and externally (onto the surface of my skin). As a result of this spread I have now had two episodes of laser surgery (the cancer is vaporised with a laser), electron therapy (electrons are fired at the cancer in a procedure that is a relative of radiotherapy) and last week I started chemotherapy.

Day One of Chemotherapy

In the meantime I try and keep myself happy and entertained as best as possible. Having dedicated the best part of my life to academia, free time has been a rarity, so it is nice to have a little bit for a change. But how much? Due to the rare nature of my cancer, questions concerning my prognosis are difficult. When you ask your doctor “how much time do I have left?” the answer is based on data concerning what normally happens in such cases. In my case there is no such thing as what normally happens because the disorder is so rare. So all I know is something about the best and worst case scenarios. The best case scenario is that the treatments I am having (all of which have been selected on a ‘best guess’ basis) will stop the steady progression of the cancer.  This will mean remission and many years of life. The worst case scenario, and I quote my oncologist, is that “we hope to keep you alive for years rather than months”. It is into this massive void, this uncertainty, into which a positive attitude has to be injected.  One piece of good news was that my most recent CT scan showed no evidence of further spread. In the context of everything else, I’ll take that. Cancer is fought in the mind as much as it is in the body. And so, and until further notice, I intend to remain unremittingly, and unapologetically positive.

I have not been doing all of this alone. In this regard I want to thank my loving wife Miriam for helping me get through each day, as well as my family and friends for all their support. I also want to thank all the staff who have helped care for me in various hospital wards and clinics. Finally, in terms of trying to stay positive throughout this experience one of the most helpful organisations has been Maggie’s Cancer Caring Centre. It is brilliant.

Robbie