Can anyone smell crispy bacon?

After a reasonably quiet and relaxed weekend and having seen the kids off to school and nursery in the morning I headed off with my wife to hospital to be admitted as planned in preparation for surgery the following morning.
I was strangely calm and lacking in fear. Perhaps knowing what was going to happen meant that I was less worried than you might expect or perhaps I just placed too much confidence in my medical team and my own ability to recover – or maybe I was standing in that great river – De Nile.
Anyhow, I arrived at the hospital feeling positively chirpy, only to be told that there was no bed for me and could I wait in the TV room and they would try and find somewhere for me to go. Refusing to get hacked off so early we set off for the TV room where and elderly woman and what turned out to be her daughter, were also sitting. The older woman was awaiting some form of assessment nut was clearly as mad as a box of frogs and couldn’t, or wouldn’t shut up.
After a while I was brought a cup of tea and told that they were still trying to sort out a bed for me but that the surgical team wanted to see me during afternoon rounds and of course I agreed to this. I was told that they were on the ward and would see me in around half an hour.
The surgical team arrived, not this time the main man but another outrageously handsome Greek man (who made me feel quite inadequate) who talked me through the operation again and confirmed that I had signed the various consent forms.
He then asked if he could look at my existing scars to help him plan the entry point. As he looked at my scar he couldn’t’ help but notice the unsightly lump behind my ear and asked me what it was.
I explained to him that it was a drain left in by the previous surgeon which had never been required and I asked if they would take it away to which he replied “Yes, as long as it doesn’t caused any difficulty”. I asked what ‘difficulty’ it might caused and he said that the drain itself shouldn’t but that closing up the wound could and that this was the main concern for them for the overall surgery. I obviously looked a bit confused by this as he then talked about the condition of my scalp after radiotherapy treatment and likened it to crispy bacon. He said if they could get the wound closed and stitched it would likely be many weeks or months, if ever, before they would be confident that the wound would remain closed.
I was a bit shocked and surprised by this as I didn’t remember this ever being raised with me during or after my radiotherapy treatment and being told this now put a bit of a dent in my earlier confident mood.
With a shake of the hand and a ‘see you in the morning’ he was off to charm the ladies in the room next door (at least I think that’s what all of the giggling and swooning noises were about).
Next up to see me was the anaesthetist – a scruffy looking bloke in s high-vis jacket, dirty jogging pants and scruffy trainers. There was a maintenance man on the ward at the same time fixing the blinds and frankly if you had stood them side by side the maintenance man would look like a safer bet for an anaesthetist.
So, after going through all of the necessary questions with the pseudo anaesthetist (who was actually a very nice man) he left confirming that he would see me in the morning.
However, about 20 minutes later he returned with the surgeon (this time the top Greek God) and asked if they could have a minute. I agreed and they launched into discussion where they asked if I would consent to being woken up during the surgery? My initial reaction was ‘Fuck Off’ and out of the corner of my eye I could see my wife squirming at the very thought of it.
I asked them to explain a bit about what would happen if I agreed to it and what the benefits were and they helpfully explained that the benefit was potentially that they could get more of the tumour out without risking damage to my brain and frankly that sold it for me. They also promised that usually people are completely unaware that they are awake and rarely have any memory of it. They also advised that they would provide a little button for me to use if I was aware of anything but couldn’t speak and that pressing that button would send me straight back to sleep.
I agreed to the procedure because frankly it offered the best chance of the best outcome for me and besides it would give me something to brag about for years to come.
The nurse was next to appear to confirm they had a bed for me and led me along to a little private room, the very same private room I had so briefly occupied on my previous admission. Happily settled and calm in my new abode my wife kissed me goodbye and promised she would be in to see me the following day after my surgery.
After a vaguely appetising evening meal and cup of tea I settled down for the night, only to be disturbed around 20 minutes later to b told I had to be moved to accommodate an emergency admission. Rather than get annoyed with this I decided to just suck it up, settle in my new location and focus on my surgery.
I settled in my new room and introduced myself briefly to my new room mates. By 10:30 we were all settling down to sleep and the lights were going out across the ward, only to be disturbed within minutes by the sound of someone shouting and screaming at the far end of the ward. After about 5 minutes the nursing staff came in to the room to reassure us that everything was OK and would settle down soon, they closed the doors and then left again.
The shouting and screaming continued for another half hour or so and it turned out that it was the crazy women from the waiting room I encountered earlier. I have no idea what was wrong with her but she was insisting that she had to put the cat out and kept trying to escape the confines of the ward. Each time the nurses got her back to her bed she would almost immediately try again to get out and the screaming started as the nurses stopped her from doing so.
The ward eventually settled down about midnight but was rudely interrupted again about 2:00am, this time by the sound of a man demanding that he be allowed out to vote, to “make sure that wanker Cameron doesn’t get in”. We could hear the nursing and medical staff trying to reason with him but he only seemed to get more and more irate. He started to get more and more aggressive, threatening the nurses that he would kill them all. It got so bad that several of us patients gingerly got out of bed to check that everything was OK – needless to say that didn’t help and simply gave the nurses more of a problem in trying to herd us back to bed whilst keeping him calm. Once he caught sight of us that was it – he was going to kill us as well now, despite the fact that he was about 70 years old, 5ft 2 tall and 6 stone in weight, and there were half a dozen nurses, 2 doctors and 5 patients in opposition.
Ultimately one of the nurses called hospital security and they arrived and had to restrain the poor old git for his and our safety. I can only assume that he was then sedated as peace returned to the ward and sleep slowly opened its arms to welcome me in.
I was awakened at 5:30am by the nurses to give me my trial medication which I had to have no more than 4 hours before my surgery, and to prepare me for theatre where I was scheduled to go at 08:00.
So, after about 2 hours sleep I was in fact looking forward to the anaesthesia and a restful sleep. At 7:30 my surgeon appeared, I thought to confirm that I was still OK to proceed but alas no, he came to tell me that my surgery was cancelled as there had been a number of emergencies overnight which meant that there were no intensive care or high dependency beds available, not just in the hospital but in Edinburgh.
I was disappointed, not at the surgery cancellation but of being deprived of the deep, impenetrable sleep that the anaesthetic would have given me. On the plus side – I could now have delicious hospital breakfast – a lump of porridge and a stale role but unfortunately no crispy bacon.

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The Waiting Game

It turns out I’ve needed Annie more than ever during the last few months.

Despite remaining well since my original diagnosis in 2011 with no real symptoms other than the occasional ‘migraine’ the wheels finally came off in April.

After another migraine at Easter I gave in to pressure from my wife and asked my nurse specialist for advice. Rather than suggest I had nothing to worry about and should just keep an eye on things I was called in for an MRI scan and within a couple of days had a phone call at home to tell me my tumour had decided to make a comeback and I would need further surgery, sooner rather than later.

As I now realise after 4 years of living with serious illness, when needed the NHS are at their best when they need to respond quickly and definitively and I very quickly had a date for a surgical consultation.

Inevitably, it was at this point that the levels of efficiency start to diminish and bureaucracy takes over.

I had my surgical consultation and which went very well and quickly. I met my surgeon, a lovely Greek man who exuded efficiency and confidence. The next step was my pre-admission assessment and then, with the offer of a drug trial, an assessment at the trials unit. Because they (the medics) wanted to get things moving quickly both assessments were booked for consecutive days later that week

The pre-admission clinic appt was on Thursday and I set-off expecting to be a couple of hours at most. I arrived at 09:10, some 20 minutes ahead of my allotted appointment time. Having checked in with the reception I was told the appt may be a long one as I needed to have blood tests, eye tests, discussion with the anaesthetist and the obligatory height and weight checks.

Even allowing for these multiple tests I still thought my original estimate of a couple of hours would easily cover the time. Four hours later, still sitting in the waiting area I had given up some blood and confirmed that I wasn’t tall enough for my weight. There had been no discussion with an anaesthetist or any of the surgical staff as they were all in surgery – what is the point in booking pre-surgical admission patient appointments when your entire surgical team has surgery booked for the same time?

Thankfully (and miraculously) I managed to keep my cool and sit quietly in the waiting area. Some time later, with all checks complete and a date for surgery agreed for the following Monday I was free to leave. As I looked at my watch I was amazed to see that it was 5:15, I had been sitting there for 8 ¼ hours with nothing to eat or drink and had spent roughly 7 ½ of those hours waiting.

To say I was exhausted doesn’t come close to it and I couldn’t wait to get home, have something to eat and drink and shout at the wife and kids.

The following morning I had to start the whole process again with my assessment at the trials unit. I set off early again with the expectation that I would be home for lunchtime – what a fool I was.

To be fair I was very quickly seen by the research nurses, had my blood taken, and completed various consent forms. I then had to wait for an hour or so for the doctor to examine me and sign off on the paperwork for me to participate in the trial and then issue a prescription for the trial drug. Even allowing for this lunch at home was still looking possible.

Having got the nod from the doctor the research nurses quickly took my prescription to the pharmacy, which was roughly 30 yards from the trials unit. The nurse returned and cheerfully observed that ‘we’ shouldn’t have long to wait – it was 11:15.

Now the drugs I was waiting for had to be started the following day to comply with the trial protocol and to enable the surgeons to confirm the presence of the drug in tissue samples taken during the surgery – any slip in this timeline would mean I was off the trial.

Given this, and an hour or so later with no sign of the drugs, I was getting a little anxious. One of the nurses, picking up on my anxiety, came over to say she had just called the pharmacy and the prescription was just waiting to be checked and would then be brought over.

At this point the WRVS trolley appeared with the offer of lunch, but with the arrival of my drugs imminent I declined and promised myself a nice sandwich from Marks & Spencer on the way home.

An hour later and now very pissed off there was still no sign of the drugs and I was seriously regretting turning down the earlier offer of lunch. After another conversation with the nurse and her subsequent discussion with the pharmacy I was informed that the pharmacist on duty had never worked on this trial or with this drug before and was not confident about dispensing it!!!

Despite the intervention of the duty doctor, the pharmacist would not budge and a call had to be put out for a senior pharmacist to attend. No longer able to keep my cool (it was now getting on for 3 o’clock) I asked ‘How fucking difficult is it to lift some boxes off a shelf and stick some labels on them?’ The nurse had some sympathy with me but her professional allegiances meant that she had to support the pharmacist and state that “it wouldn’t be much longer”.

After another hour the senior pharmacist finally arrived and it was all systems go, except of course it wasn’t. The senior pharmacist wanted to read and review the trial protocol as he wasn’t familiar with it. By this point it was clear even the nurse was getting seriously pissed off and I had seen her organising her coat, bag and desk indicating to me that it was the end of her shift.

I went over to her office and suggested that if she had to go she should just do that and I would wait for the pharmacist to return with my prescribed medication. She thanked me but said she couldn’t leave me on my own as the medication has to be checked and issued by 2 members of staff and they needed to talk to me about how and when to take it. By now, a second nurse had joined us, either on her way out or because she had been called back in, because she had her coat on.

I was now pacing the ward like a caged and very angry lion whilst the nurses sat drumming their fingers on their desks. Eventually at 5:10pm the pharmacist appeared and handed over the drugs without a word of apology or explanation to me or the nurses. I was mad as hell but after a second full day of sitting around the hospital I just didn’t have the energy to say anything.

I thanked the nurses for their patience and tolerance, took my medications and instructions and headed off home weighed down by the thought that the last couple of days didn’t bode well for the weeks and months of treatment to come.

 

 

Still to Come:

They’re all nutters!

Shall we do it with the lights on?

I want my mum!

It’s a Hard Knock Life

I’ve been suffering from a bit of a cold recently (or man-flu as my wife likes to refer to it) but despite the pain and discomfort I manfully continued to work and press on with the business of living.

It was whilst at work that I was struck by just how de-sensitised so many have become to the impact of serious illness and the problems of the world that seem to be getting bigger and more complex by the day.

I was in a meeting and, probably rather annoyingly, was constantly sniffing, blowing my nose and reeking of various menthol based substances when one of the other people attending the meeting commented on what a rotten cold I had.

I smiled stoically and said ‘well, it’s only a cold and you just have to get through it’. Her response was “Oh I can think of nothing worse than having a cold, its so debilitating” – I just smiled and nodded my head thinking ‘If only you knew what it was like to be diagnosed with a bloody brain tumour you moron.’

Then, and just to prove I could be as out of touch and insensitive as my erstwhile colleague, later that day I was reading some posts on one of the patient support websites I visit and someone on there was asking for advice on how to manage with certain aspects of their treatment. They explained the type of cancer they had:

Primary breast cancer which has also spread to uterus, ovary, spine, ribs, pelvis, collar bone and eye. Holy shit, how was she still standing up!

Part of the online discussion was about her (the mention of breasts and ovaries led me to the assumption that she was a she!) desire to sponsor a child in the developing world and how she should best go about that to ensure that the support would continue after her death.

I remembered hearing a quotation (can’t remember from whom) that went something along the lines of “Life is precious, even to those for whom it has become a burden” and this seemed highly appropriate (to me at least) to this woman’s situation.

It seemed to me that such was her desire to live and enjoy every precious second of that life that she was not only able to tolerate the pain and distress of this creeping and insidious illness and the constant rounds of debilitating treatment (she’d just completed almost 2 years of chemotherapy) she was still thinking of others.

I inevitably felt some empathy with her but could only marvel at her resolve and sheer bloody mindedness to keep going. It would be so easy to give up and let the illness overwhelm you but there is something in the human spirit of so many people that keeps them positive and hopeful and in many cases (like this one) generously supporting others in difficult circumstances.

I genuinely believe that this generosity of spirit is present in most of humanity, but, like most people suddenly and depressingly faced with their own mortality, I am also acutely aware of the massive injustices in the world and yet feel utterly helpless to do anything about them.

The appalling, wanton slaughter of so many people across the globe on a daily basis, the suffering and starvation of millions of children each and every day and the chronic and painful illnesses endured by so many make me weep. I cry for all those who suffer but equally for those who could help but who frankly can’t be arsed.

I regularly try to think of some way to engage the conscience of the tiny percentage of people in the world who hold most of the wealth and resources because it is they who, if they so wished, could solve so many of the world’s problems.

I know that there will likely be some who read this and who think – here we go, another terminally ill bleeding heart who has suddenly realised that for a lot of people in the world life is shit and who now wants to change the world.

Well, do you know what, that might well be true, but I challenge anyone who might find themselves in that situation to try and live without thinking about what is important to them in their life as they face up to their death and the realisation that it’s getting to late to do anything about it.

If you do manage to get your head into that particularly uncomfortable space, once the tears stop I think I’ve found the cure for your depression and its called Annie.

Being a heterosexual male Scotsman I have a pathological dislike of musicals except for Annie – I’ve always loved it, from the early version with the curly, red haired Annie and Albert Finney as the bald Daddy Warbucks to the slightly darker version with Kathy Bates as the scary Miss Hannigan. The sense of hope, positivity and ultimate joy of life and love has always struck a chord with me.

I recently took my daughters to see the latest incarnation of the movie, not really expecting them to enjoy it as earlier attempts to get them to watch any version as an alternative to High School Musical, Frozen or any other horrible Disney extravaganza had proved fruitless.

I was though pleasantly surprised by the quality of the new film and the response of my daughters who loved every minute of it and have practically worn out the laptop and iPad watching the songs on youtube.

I do have to say that some of the performance in the film were very unexpected – both Jamie Foxx and Cameron Diaz really are excellent singers and Cameron Diaz brought a great comedy touch to the part of Miss HAnnigan  – bloody hell I’m starting to sound like Barry Norman!

My point with all of this is not to critique the film – simply to recommend it to you if you are one of the chronically ill who has ‘down’ days and needs cheering up – it really should be available on prescription – listening to and watching performances of songs such as ‘Tomorrow’, You’re never Fully dressed without a smile’, It’s a hard-knock life’ etc would , I’m sure, put a smile on anyone’s face when they’re feeling a bit pissed off.

Regular readers of this blog have probably been wondering why there have been no recent updates and possibly even whether or not I was still around and capable of bashing away at a keyboard.

Obviously the fact that you are reading this means that both of these things are true and the lack of updates is nothing more than a result of being well and getting on with living and working.

I recently had my driving licence renewed for a further year and my work contract continued for a further 3 months. I’m sure that most people would think this was great and look forward positively – not me though!

My natural state of worry and pessimism is starting to creep back into my thoughts and as time goes on I am increasingly weighed down with thoughts of when my illness will resurface and my luck runs out for good.

Although I have no obvious symptoms of my original illness (I still don’t like writing the words brain tumour) a couple of painful migraine like headaches over the last few months are a sharp and very real reminder that things can change very quickly.

The migraines are a worry, not just because they might mean cancer recurrence but equally that they may be the beginning of side effects from my original treatment and who knows where that might end.

Oh bloody hell I’m getting maudlin – need to go and watch Annie!

 

Found this lovely quote:

Yesterday I felt terrible, thought I was gonna die. Today I woke up a butterfly.

Don’t upset the Wife

Well, that’s it – I knew the time would come and that I would have to face the inevitable, take it on the chin and act like a man.

No – not that – I’m still fine and have no plans to go anywhere for a while yet. I (or I should say we as this involves my beloved other half) finally got round to sorting out our wills. They’re all done, signed and ready for the time they’ll be needed.

It’s an interesting and frankly difficult process to focus on. I know that it’s sensible to make sure that your wishes are known and documented properly and that your loved ones are looked after but it’s only once you start on the process that you realise all of the things you have to think about:

  1. Who will you appoint as your executor? Should I choose my brother, or by doing so would he think I was giving him some secret signal that my time was short- this would freak him out!

 

  1. Should I choose one of my sisters? If so, which one and how to do so without offending the other 2?

 

  1. One of my parents – no – It would be particularly cruel to ask a parent to execute the estate of one of their children.

I finally settled on one of my sisters, with another one as a substitute (I haven’t told any of them yet so when I do the unsuccessful sibling is going to be mighty pee’d off)

My wife had to go through the same process although with a much shorter list as she has only 1 sibling (guess which of us is from a catholic family then!)

I pretty much thought that was it until the lawyer mentioned the topic of guardianship of the children should something happen to both of us. Slightly taken aback at this I thought “She’s going nowhere – I’m the one with cancer”. The notion that my wife might die and therefore leave the children without either parent scared the crap out of me. I had thought about this a lot when I was first diagnosed but had long since dismissed it as a serious possibility as despite her penchant for pizza and chocolate my wife is fairly healthy.

However, despite the fact that it was an unlikely scenario we had to think about who we would wish to care for the children should such a situation occur.

Without any discussion my wife blurted out the name and address of her friend and despite focussing my very best stare on her, she continued providing contact details for this friend. The lawyer must have felt the stare and asked if I was in agreement with this to which I responded ‘ ehm, I think we just need to have a bit more discussion about this’.

Now I had nothing against this friend but there was no way she was going to look after my children. She and her partner lived on the other side of the city so the kids would lose contact with friends, would have to change schools and would likely have no or only rare contact with their extended paternal family

After a few days of arguing and snapping at each other we came to an agreement that this friend was probably not the best person for the job.

We then discussed the possibility of my wife’s brother and his wife taking on the role (well I say discussed, I let her present her case and then shot it down in flames) He’s a lovely chap – 35 year old teenager, no child care experience, lives out in the sticks etc etc.

Eventually we agreed that my sister should be offered the job – 2 delightful, well behaved children, weekly trips to swimming classes, gymnastics, trampolining, more gymnastics, 3 different dancing classes, tears, tantrums, no pay, no relaxing holidays, exhaustion & poverty – how could she refuse?

Thankfully, she didn’t and was delighted to accept the role (her husband I’m not sure is as enthusiastic) but she’s sworn to secrecy as I haven’t told the other 2 yet and again they’re likely to be a bit miffed at being passed over for the opportunity (at least until they next see their nieces for more than 5 minutes and realise how lucky they are to have escaped).

We agreed though that in the event that my sister was unable to look after the children that my wife’s brother should be next in line. We also agreed though that there would be certain expectations about the care of the children that we would document jointly and attach these to our wills (that’s going to be fun).

So, wills written, guardianship of the children sorted, next on the list was a Power of Attorney agreement. The lawyer talked us through this and gave us some leaflets to read before we made a decision. I knew that this was going to come and that it made sense to have my wife able to manage not just my financial affairs but also to make decisions about my welfare and medical care if and when needed.

The lawyer pointed out that we were sensible to this in place now rather than wait until it was needed so I agreed. He asked if we were going to put one in place for both if us or just for me but it seemed more relevant to do it just for me.

A couple of weeks passed until the lawyer called us in to sign the final version of the wills and the power of attorney documents (and of course, to pay his bill).

We went along at the appointed time and were given copies of the wills and power of attorney for a final read through before signature. The wills were fine but I was slightly confused by the POA as I had expected it to contain a section which confirmed how I would be declared incapable of managing my own affairs and by whom but there was nothing.

After we had signed the wills the lawyer moved on to the POA document and asked if everything was OK with and I asked why there was no mention of who declared me incapable of managing my affairs. Both he and my wife looked at me like the fool I obviously was and he pointed out that as soon as I signed the document then my wife had control of my affairs.

I was completely taken aback at this and they could both clearly see that. I was asked repeatedly if I was OK with this and that I understood what I was signing. I did understand the words, I just couldn’t get my head round the fact that someone else, albeit my wife, could take control of my affairs whilst I was capable of doing so myself.

I seriously considered not signing until I read the opening couple of paragraphs again where it mentions that my attorney can operate and indeed overdraw bank accounts on my behalf and realised – well she does that now so nothing new there.

I was also reassured by the lawyers words that nothing really changes until it needs to. (how naïve to be reassured by a lawyer)

 

I decided that until such time as I was on a life support machine, with no prospect of recovery, that my wife loves me enough not to exercise her powers. Or does she ………………………..aarghhh!!!!!!

Can we be Fixed?

After finding our way out of Wales and returning home (a bit easier and quicker than the outward journey) we settled back into a routine of childcare and work for the remaining few weeks of the school holidays. In reality this meant my wife sorting out the childcare and me working to avoid having to deal with the kids.

Despite, or perhaps because of, my health issues my relationship with my eldest daughter (age 10) had deteriorated to the point that it was difficult for us to even communicate at times. It felt to me that she had somehow worked out that I was going to die and in an act of self preservation was determined to sever any bonds that we had.

I fretted about this a lot as I love her more than anything but I didn’t seem to have the mental capacity to deal with trying to sort it. She simply refused to listen to me or do anything I asked her to and would often just ignore me. Such behaviour really brought out the worst in me and sometimes as we argued or fought I’m sure it was difficult to tell who the adult was!

I didn’t want to dismiss the problem as I simply couldn’t accept the fact that I might die with my daughter hating me at worst, or being indifferent at best. I could only imagine the psychological problems that would inflict on her in later years. Of course I also didn’t want to address it as:

  1. Maybe this was perfectly normal behaviour for a 10 year old girl
  2. Maybe she had worked out that I was dying and if so, I couldn’t face having that conversation with her
  3. Maybe she was just a rude ignorant little shit J
  4. I was her Dad and she should love and respect me no matter what – so there!

I decided to leave it a few weeks until she was back at school and hope that the discipline of school and getting back to a routine would sort out her behaviour (well it clearly wasn’t anything to do with my behaviour)

Of course it didn’t – but what it did do was help me realise that her behaviour, whilst irritating and annoying, was pretty normal for a 10 year old (all her friends seemed to be equally annoying) so it forced me to look at myself.

Now, what could be the problem?

Well, and some of you might have picked this up already but I have Cancer – not just any old cancer but brain cancer!

There are no bragging rights with cancer – it’s fucking awful whatever flavour of it you have. However, I would argue that on some level brain cancer is different. Not because it’s more painful, or the treatment is worse, or the prognosis is worse. I think it’s because for most people having a disease that is destroying your brain is having a disease that is destroying who you are as much as what you are.

For example, if you mention brain surgery there is an assumption that this probably has or will affect your intellect, your memory and your thoughts. When you mention that you have brain cancer there is the same assumption but also that you are going to suffer from increasing physical deterioration as well. The result being that you will no longer be the person you were.

I know this is true because it’s exactly how I felt when diagnosed – terrified that I would be trapped in some twisted physical form that didn’t work and unable to communicate. I also know that this is the outcome for some brain cancer patients, but not all.

I was determined that I wasn’t going to be one of them and the fact that I had returned to reasonable health, to work and to drive indicated to me that I was on the right track.

Despite believing that I was doing well the reality was that in my moments of self awareness I knew that I had developed a ferociously short temper and devastating mood swings and it struck me that these were the very things that had likely scared my daughter and made her wary of me.

I had no idea why my temper had become so short as most of the time I was fine and able to deal with people reasonably well without screaming at them or threatening to stop their pocket money!

Of course the reality (when it eventually dawned on me) was that like most other parents, there are times when my children annoy the hell out of me and this is always worse when I’m tired. I was tired a lot simply because I was getting older and didn’t sleep very well. This isn’t because of my illness (well not directly) but because I always read before going to sleep to relax and try to stop me thinking about cancer so it often well after midnight before I get to sleep.

 

I’m also stuck with a body clock that wakes me up at 6:30 every morning regardless. Add to that the 4 days a week of work, 2 children, a wife, a goldfish, a hamster, grass to cut, car to wash, etc etc it’s no wonder I’m bloody knackered and shout at the kids.

Of course I’m stuck in a ‘catch 22’ situation whereby I understand the problem, know the cause, know how to fix it but am too tired to do it. Oh and I’m shit scared of being wrong about all of this and accepting that my health might be deteriorating.

You might wonder why I’m such a worry wart about this and really I try not to be but every time I manage to start looking forward instead of over my shoulder a great big fist smacks me in the mouth and shocks me back into my world of fear. Now the fist in the mouth might sound like an aggressive metaphor but I can assure you that whilst the pain might not be physical it is just as devastating.

As an example, I was at work recently happily tapping away at my keyboard when my hearing suddenly went a bit strange and the thumb and forefinger of my left hand went numb and felt as if they were expanding to the point of bursting. Seconds later I felt an excruciating pain in my head and immediately went into panic mode (without letting anyone know and potentially embarrassing myself of course).

I immediately jumped to the conclusion that the little bastard in my head was back and at his most aggressive. I hurriedly left the office, lying about a meeting I had to be at and after e-mailing my wife I jumped on a tram and then a bus to get home as quickly as possible.

When I got home the headache was just as bad (although the thumb and finger were fine) and I lay down and fell asleep.

When I woke up a few hours later my wife was sitting beside me and stroking my hair (well OK – scalp) I felt much better with only a slight headache remaining. The next few days for me were spent debating with myself whether I should contact the hospital and searching the web (dangerous habit for the sick and chronically hopeful!) to find reasons other than cancer for this distressing and painful display of symptoms.

Eventually finding the right website (the one that gave me the answer I wanted) I concluded that I had suffered a simple, if painful, migraine. Relieved at this, the worry that had been building up started to dissipate.

I continued to surf the web, as I do on a regular basis, looking for the latest news on developments in GBM treatments, any updates on the drug trial I had participated in etc and was delighted to read that the company which developed the vaccine I had been given had been awarded new, and very significant funds, to develop further the initial approach and treatment options for brain cancer – this gave me a little bit of hope that maybe, just maybe, in my lifetime there may be an effective and long term treatment developed that I might benefit from.

You’re probably thinking to yourself at this point – what’s the problem here, you had a migraine and you got over it.

Of course, you’re right, I had diagnosed my migraine, had discovered the welcome news that my drug trial continued to show promise and was starting to feel a bit more positive. But, rather than close the laptop and do something more interesting I continued to trawl the interminable depths of the web for any interesting GBM related news.

Sadly, what I found was an article about someone who had recently died from GBM and there were a number of warm and sincere articles about this bloke and I really felt for him and his friends and colleagues who had written the articles. As I was scrolling through them and came across some pictures I suddenly realised that I knew this guy – we had been colleagues throughout the 1990’s and early noughties until he moved to a new job in London and I hadn’t seen him since.

On researching a bit more of his story I discovered that he had been diagnosed in early 2012 and died in late 2013 – bang on the median timeline for the newly diagnosed.

Of course my slightly positive mood was immediately smashed and I sank back into despair – it wasn’t that I would miss him, I hadn’t seen him in more than 10 years, more that an illness of which I knew nothing until a couple of years ago now seemed so prevalent in my life.

I now knew 3 people who had died from brain tumours in the space of 18 months – not to mention the number of people I knew who had been diagnosed with another form of cancer since I first became ill.

I found this distressing and frustrating in equal measure. Distressing that so many people have to suffer with this terrible illness and the pain and misery of the treatments they will need to endure.

The frustration came from reading a newspaper article about a new cancer related discovery that offered real hope for the treatment of cancer. Good news you might say but the article, whilst positive, explained that the expensive ongoing research, development and trial of the discovery might take years and would likely provide a treatment in around 10 years.

So, of course, as usual; it comes down to money and in these times of global recession there just wasn’t enough to go around (at least not after governments pay for all the wars and weaponry they spend our taxes on!!)

In the same newspaper was an article about the richest people in the world and I was struck by a thought:

If the top 10 richest people in the world gave 5% of their wealth to charitable causes that would be almost $28 billion. I’m pretty sure that level of investment in medical research would wipe out a lot of diseases or provide much better treatments.

Now I wouldn’t dare tell anyone how to spend their hard earned money but think about this:

If you were a billionaire – would you donate 5% of your income to charity?

Who’s a Scaredy Cat

So, here I was in Spring 2014, some 2 and a half years after diagnosis and to all intents and purposes healthy, working again, driving again and financially OK.

Add to that the fact that I had a wife who loved and more importantly, tolerated me, 2 beautiful children who thought I was ok(ish) most of the time and a wider family who despite their individual personality defects, cared about me.

To most normal people this would no doubt seem a fairly good life and one which they would be fortunate to have.

For me however, despite all of the above, I was still incurably ill and the beast that had originally bit me was going to come back to devour me at some point.

I knew that thinking this way wasn’t healthy but I couldn’t stop myself and nor could I find the words to explain that stomach churning, energy sapping, insatiable terror that engulfs those of us unfortunate enough to be given an incurable illness diagnosis.

I tried to pretend that I was Ok with it, that I had come to terms with what had happened to me and was going to happen to me but if truth be told it was all an act. Even now, my first and last thoughts of the day are about a) Is today going to be the day that it all starts again and b) Is tomorrow going to be the day that it all starts again.

The answer of course is I don’t know and never will. And therein lies the problem, just as it was when I was first diagnosed it is impossible (at least in my slightly disordered mind) to plan any more than a few days or at most weeks ahead.

If you factor in to that my propensity to worry about everything then you might begin to get an idea of how difficult it can be to function as a normal family.

For example, I live in fear of my wife bringing up the subject of holidays, which she does regularly, and there are a number of reasons for that fear:

  • The kids (and the wife) always want to go to some Mediterranean beach resort or Florida, or Disneyland and my credit card starts to groan in my pocket!
  • I am absolutely terrified of flying affecting my brain and indeed medical advice is to avoid it
  •  Insurance costs for someone in my position are extortionate
  • I am scared of becoming ill whilst on holiday and not having appropriate medical care available
  • It’s not home and home is safe – everywhere else is scary
  • Since my diagnosis I really struggle with noise and loud music (or maybe I’m just getting old!)
  • And lastly, I’m just a miserable bastard!

 

However, as my wife helpfully points out, this may well be how I feel but it’s not all about me (Oh yes it bloody is!!) and my inability or unwillingness to ‘move on’ as she puts it is unfair on her and the kids who are being denied opportunities that all of their friends have. The first time she said this to me I really lost the plot and pointed out to her that despite my health condition we had been on 13 holidays or weekends away in the past 2 years – how many of the kids friends have had those bloody opportunities.

Not surprisingly, common sense and logic made little impact on her basic premise that I was depriving her and the kids of ‘better things’

We have repeated this argument in various different formats and at various times over the last 6 months or so with little real movement by either of us towards reaching an agreed compromise (she just won’t let me win!).

The reality was of course that I was (and am) just a big scaredy cat and frankly unless and until someone tells me categorically and unequivocally that I’m cured that is unlikely to change (and that’s never going to happen). I had thought that the passage of time would help and in some ways it does, but in reality when in my darkest or loneliest moments my thoughts become filled with the reality of my health situation and the terror is just as real as it was almost 3 years ago.

So after weeks of discussion and debate (or tears and tantrums) we finally made a decision on a summer holiday and settled on rural North Wales – I had finally won an argument – there was no flying, it was in the UK and it wasn’t anywhere too noisy (a small but important victory).

We had found a beautiful house for rent that had all mod cons, plenty of space, beaches nearby and to top it all off it had its own outdoor, heated swimming pool – yes in Wales. In the UK!!!!

We were all really excited about the trip and kept looking at the website to drool over the house and swimming pool, working out the best way to get there and how long a drive it was.

The day finally arrived and we excitedly packed the car, got the kids settled in the back watching DVD’s and set off for what we worked out (OK Google Maps worked out) was little more than a 6 hour drive with my wife doing the first stint. We hadn’t even reached the end of the street before we had the first ‘how long ‘til we get there’. Resisting the temptation to strangle my daughter I calmly explained that we would stop in a couple of hours for lunch and would get there about 3:00pm – this was going to be a long day!

After our lunch stop I took over the driving as planned for the next couple of hours as it was all motorway and fairly boring (which meant my wife was likely to fall asleep:-) but we made pretty good time and were on schedule for our 3:00pm arrival when we could chuck the kids in the pool and put our feet up.

We skirted around Manchester and Liverpool and hit the North Wales Expressway – this was an absolute doddle of a journey so I kept driving. Eventually we had to come off the smooth, fast and rather beautiful expressway and say farewell to the stunning sea views. As we turned off at the designated junction some 40 miles from our destination I assumed (as did Google!!) that we had about another hours driving time to our destination – bang on schedule.

There were however, a number of flies in the ointment:

  1. The weather which had been lovely and sunny all the way was starting to close in and become a little dull’
  2. The welsh language’
  3. The kids were desperate for a pee.

After finding somewhere for the kids to go to the toilet and get them a drink and a look around the inevitable service station shop we eventually coaxed them back into the car with the promise that they would soon be in the pool!

Off we went again, deeper and deeper into the welsh countryside but reasonably confident we knew where we were going. Then the mist came down, just as the roads got narrower and the hedges got higher. By now we were driving virtually blind and depending on the road signs which were increasingly few and far between and virtually unintelligible. The problem really was the native welsh language doesn’t use enough vowels, puts all the consonants in the wrong order and overuse the letter L. The fact that the government then insist all signs should be in English and Welsh means that you end up with something like this:

Welsh Road sign

Now I don’t have a problem with preserving the welsh language but if you are going to make signs like this can’t it be done with clearer definition between the two languages and bigger so that you can fucking read them as you approach and drive past them?

And it wasn’t just the signs – after going round in what seemed like circles we finally found someone to ask directions of. Nominated by my wife to do the talking I asked a woman if she could point me in the direction of Roshirwaun (the place we were staying and which to most normal people would be pronounced Rosh Irr Wan).

The hapless yokel looked at me blankly and said she’d never heard of it. I grabbed the Google map and pointed at the place name and she (slightly mockingly) said – ah, you mean Rossivar – Fuck me!!!

She then proceeded to give us the vaguest set of directions imaginable and we set off less than confident that we would find our way to the holiday house. The mist was by now a thick fog and it was well past 4:00pm.

I was still driving and starting to worry about running out of petrol and getting lost when out of nowhere a double decked bus sped towards us and although there seemed only enough room for our car, the bus thundered past at a fair old speed. This really was getting a bit scary now and both my wife and the kids were starting to get just as anxious as me.

As we approached a small village (god knows what it was called I couldn’t read the bloody road sign) the fog briefly thinned on the drivers side of the car and I could see a very steep drop to a rocky seashore and the Irish sea about a foot away from the edge of the road.

Enough was enough – this really was dangerous and we found somewhere safe to stop before phoning the housekeeper for directions, the problem of course was that we really didn’t know where we were and there were no landmarks to work from. The poor woman did her best to work out where we were based on us saying we had been driving on a road very close to the coast, and gave us some detailed instructions to follow, happily telling us we were only minutes away!

We followed her instructions to the letter and remained resolutely lost. Driving around for another 20 minutes or so and really starting to panic we came across a house and decided to stop and ask the householders for directions.

Again, I was despatched to do the asking and after a few minutes of umming    and ahhing and shoulder shrugging a moment of clarity came when I mentioned the house had a swimming pool. The lady of the house knew it and a few minutes later (once she had told me how posh it was) I left with (and I kid you not) the following instructions on how to get there:

  • Turn left at the next telegraph pole and go through the village
  • Keep going left until you come to a house with lovely mullioned windows (that’s where Steven lives???)
  • Go left again and you’ll pass a purple pick up truck (well, only if Kevin’s in!!!)
  • Go past 2 or maybe 3 openings on the left and as you turn down one of them there is a turn off to the right
  • Go along there and take the next left and then first right and you should be there.

 

Fucking useless!!!!

 

About half an hour later we passed the same house again and I was sorely tempted to stop and give them a mouthful!!!

 

Finally we found a mailbox and thinking that this must be a well known landmark phoned the housekeeper again. Turned out we were about half a mile from the house – although we still needed instructions to get to it. It was now dark, foggy and wet and I was miserable, stressed and absolutely knackered.

Having said that the pool was just too inviting so after quickly unloading the car we all jumped in – some 3 hours later than expected and 9 hours after leaving home.

 

North Wales is absolutely beautiful but for god’s sake get some decent road signs, and if you’re driving don’t depend on Google maps.

Katy’s Gone

Despite (and not because of) the departure of my brother and his wife the rest of the day went very well as everyone let themselves go a bit. I continued with my role as Head Chef which I enjoyed immensely and everyone else spent the daytime relaxing. In the evening we all gathered in the drawing room(s) to chat, play games, or just enjoy the lovely open fire.

The younger members of the group, as you might expect, stayed up latest and my nieces and nephews and their partners worked their way through the alcohol store by making cocktails in lovely china teapots and drinking them from china cups.

It looked very sedate and almost Victorian in nature but of course they got legless (mainly the girls) and were very hung-over on the Sunday morning.

Regardless of their hangovers, my sisters had arranged an Easter egg hunt in the grounds – mainly for the benefit of my two children and everyone went outside to watch. The kids had great fun and collected a huge number of eggs and other treats whilst some of their older cousins looked a little queasy to say the least.

After another lovely meal (cooked by moi) on the Sunday evening and a few more drinks it was time for bed and the weekend was almost over

The next morning as we all gathered outside to say goodbye no-one wanted to leave and there was lots of excited chat about when we would do it again without anyone putting their hand up to foot the bill next time!

So, I guess we’re no different from most families – we can get on, some better than others, we are all decent human beings, and I think our parents are proud of us. I am certainly proud of all of my family, especially my wife and children, but what the weekend taught me, and I hope everyone else, was that thinking about and doing things for others can be just as, if not more rewarding than doing things for yourself.

Right, soppy nonsense over with my own little family set off for our weeks’ holiday. The holiday park was great and the kids really had a ball. It was a great opportunity for us to cast off all of the stress and worry of the past few weeks and just be a family.

We spent the week going for walks, swimming, eating, drinking (Me), rock climbing (my eldest), treetop trailing (my eldest), caving (my eldest) and bowling. (I wonder if you can tell who is spoilt). By the end of it I was exhausted, broke, but happy.

On returning home, after watching my wife like a hawk for the 2 ½ hour drive to make sure she didn’t fall asleep, what should be in the pile of unopened mail behind the door but a letter from the DVLA.

Expecting the contents to be a long winded explanation of why there was another delay, or worse refusing my application for a driving licence I was stunned to see a letter explaining that my application had been approved and my reinstated driving licence was enclosed.

I didn’t know how to take this – I had desperately wanted my licence restored but in reality given my diagnosis I had never expected it to be approved. I stood there staring at it with tears in my eyes and slowly making their way down my cheeks.

As my wife came into the room and saw my tears she (obviously) wondered what was wrong and I showed her the licence. The look on her face showed that she was as surprised as I was. She gave me a hug and said that’s great news, what are you crying for?

I started to explain that it was such a milestone for me and that I never thought I would live long enough to see it. I just couldn’t believe how lucky I had been to get this far and to get so much of my life back. The tears continued to flow as I read and re-read the letter whilst turning my new driving licence over and over in my other hand. I was so happy and even the realisation that the licence was limited and only granted for a year couldn’t take away the sheer joy.

My mind was rushing and I wanted to jump in the car there and then and take off on my own. I suddenly remembered that I wasn’t insured to drive the car and started begging my wife to phone and change the insurance. Doing her best to calm me down (and stop me getting access to her car) she pointed out that it was early on Friday evening and the insurance company wouldn’t be open. Please. Please try I begged, which she did (or at least she said she did) but there was no answer.

Early the following morning I was badgering her to try the insurance company again as they would probably be open on a Saturday morning. Reluctantly it seemed, she did so and within a few minutes I was road legal and ready to go.

With her cautionary words and worried look burned into my brain I was allowed (Ha!) to go out for a 10 minute drive. It felt good to be driving legally again and thankfully nice and quiet on the roads near our house. However, as I approached the main road it was a different story. There was way too much traffic, too many pedestrians, traffic lights, crossings, the car radio – aaagghh – This was too much for me to cope with and I felt very vulnerable.

Of course rather than admit that and go straight home I pulled onto a quiet street, parked the car and calmed down before heading home and saying everything went just fine.

Just goes to show I guess that sometimes my wife can be right – right to not let me go charging out in the car the day before, right to ‘delay’ organising the insurance, right to only let me have 10 minutes and right to tell me to be careful. She will be awfully smug when she reads this.

For the next few days I completed very brief journeys as I became re-acquainted with the sensory overload that comes with driving in a busy city.

Over the next few weeks, with summer approaching, feeling well, driving again and another extension and expansion of my work contract I was beginning to feel pretty positive about how long I might survive for.

Although there was good, positive news about the drug trial I had been part of and feeling pretty well generally I wasn’t naive enough to think I was cured but hoped to get a few more years yet and be classed as a ‘Long Term’ survivor. One question which I was regularly asked was ‘Are you in remission?’ and to tell the truth I didn’t really now if that was the case or even if it was possible with this disease.

That being said I had a clinic appointment coming up so decided that I would ask the question then – if I remembered.

Before then I had to attend the hospital and complete a series of tests as part of my commitment to the fatigue study. I turned up on the allotted day and time and was led through to a small room where I was asked a number of routine questions before the test began.

Finally, the tests – I was asked to look at a list of 30 or so words and then turn over the sheet of paper before repeating as many of the words from the list as possible. I think I got about 5 words before I dried up. I was asked to repeat it  (I immediately thought that this meant there was something wrong) and on the second occasion struggled again after 5 or 6 words.

We then moved on to the next test where I was handed a box which, when opened, was full of little wooden dowels and I was asked to, using only 1 hand, take all of the dowels out of the box and then put them in the pre-drilled holes in one side of the box – simple!

I picked up the box and turned it over to empty the dowels into my hand and was immediately interrupted by one of the researchers telling me I was doing it wrong! How can I be doing it wrong I protested I’ve only just emptied the dowels into my hand.

But you are using 2 hands she said and the instruction was to only use 1 – my response was that I was only using one hand to put the dowels into the holes and had used my other hand only to lift and turn the box.

You must only use 1 hand she said in her best schoolmistress voice. This just seemed silly to me but I did as I was asked and laboriously picked up one dowel at a time and put it into one of the holes. When I finished she asked me to take the dowels out of the holes and put them back in the box. I picked up the box and quickly flipped it over to tip the dowels out of the holes and into the box and closed the lid whilst looking at her with a smirk on my face.

I think she realised that she was dealing with a superior intellect and despite clearly wanting to tell me to do it properly (i.e. one at a time) she obviously thought better of it and with an almost imperceptible sigh moved onto the next test.

This turned out to be a game of ‘join the dots’ where I was handed a sheet of paper with lots of dots and numbers on and asked to use a pencil to connect the dots between the numbers in sequence. This was repeated a few times with slightly different and more complex patterns of dots and numbers before we moved on to some visual memory tests where I was given pictures to look at for a few seconds and was then asked to describe what I saw. I managed to complete these and was told there was only 1 more test – I was asked to again recall as many words as possible from the list I had seen almost an hour earlier – shit, I thought to myself.

However, once I had started it was easier than before and I got about 10 – weird.

All finished I headed off home and on the bus started to reflect on the test and my performance. The more I thought about it the more I worried as I wasn’t sure whether my performance was good, bad, worryingly bad, average or what and I wasn’t sure that I would ever find out. I was concerned that my performance was pretty poor and that it was poor because my memory was getting worse which meant that my treatment, primarily radiotherapy, was affecting me.

I wallowed in this self pity for a couple of days, trying to test my own memory to disprove my worries and calm my anxiety. The thing is I just couldn’t put my finger on anything specific as my long term memory seemed to be fine and for the most part I remembered everything I needed (or wanted) to.

Before I could worry about it too much it was time for my clinic appointment and as usual we set off in reasonable spirits, expecting a fairly brief appointment.

I was half expecting to see Katy after missing her last time round and letting her know that I had got my driving licence back, she was a very keen driver and having no licence frustrated her hugely and I was hoping she had got hers reinstated as well.

I was kind of disappointed then that she was not in clinic that day and when I asked about her was just told she wasn’t due in today.

We had our usual idle chit-chat with my consultant who seemed happy with my progress, so happy in fact that she said she didn’t need to see me for a year rather than the 6 monthly check-ups I had been getting until now. After confirming that I still didn’t want an MRI scan I bid her farewell and said ‘see you next year’.

On the way out, smiling at the fact that I wouldn’t be back here for a year, and delighted at the confidence the consultant had in me that she felt a year with no check-ups was OK, I made an appointment for the following year.

This helped lift me from the misery which followed the memory tests and I ‘bucked up’ again.

A few days later I got the news, from my sister, that Katy had died a few weeks previously.

My sister had not wanted to tell me, and indeed hadn’t told me immediately because she was worried about how I would take the news.

How the bloody hell did she think I would take the news – Katy was my yardstick of progress and apart from the sheer tragedy of someone so young, so vibrant and so bright losing their battle with this awful illness, where did that leave me!

I was utterly devastated at the news – obviously for Katy’s family and friends but rather selfishly also for me as I felt that time was now running out for me.