Aftermath: Part 1

When i started doing this it was with the intention of cataloging my wife’s journey and subsequent recovery through her cancer and treatment from my point of view – the carer. As it turns out the universe had a different take on how that would play out.

Jennifer passed away at the end of May 2016 and now 6 months on from that I’m sitting down to try and write some things that might make some sense of what my young little family is going through. I’ve tried to write here quite a few times and the drafts folder is full of attempts that have ended in tears, pain, or black depression. Sometimes all three. Even this umpteenth time has me writing with a physical hard lump in my chest.

From previous posts you might know that my partner of almost 10 years was diagnosed with bowel cancer at the beginning of 2014 and then thanks to my private medical cover she had various chemotherapy treatments with varying results – mostly it turned out not conclusively great results – until one day at the end of January 2016 we were told by our Oncologist that there was nothing else they could do to try and treat this disease that had now spread to other parts of her body and they were stopping the treatment.

Jennifer and I knew that this was her Death Sentence. We had the kind of relationship where we talked about it, this wasn’t a taboo subject for us. We talked practically, we talked lovingly, we talked wistfully. Sometimes we joked about things – she said she would come back and haunt me if the kids ended up wearing odd socks, I told her after she passed I was going to have her stuffed and put on the end of the sofa with her laptop. Sometimes we just sat in silence and looked at each other not wanting to believe what was going to happen. Sometimes the light at the end of the tunnel actually is a train coming the other way. We wanted to be prepared as much as it was possible for the children’s sake and in turn prepare the children as much as possible for what would be a gigantic loss in our lives.

I’ve been through some pretty horrible times and have had to face some pretty horrible things in my life: but discussing death and having to tell the kids that Mummy was going to die was just the awfullest thing I’ve ever had to do. They’re were only 4 and 6 years old at the time – they should be playing with dolls and cars, splashing about in the bath without a care, not being told their life was about to shatter.

As the year progressed Jennifer became more and more ill, less and less mobile and spent a few stints in the Marie Curie to see if they could relieve some of the symptoms of her constant suffering. In 5 months I saw her go from looking remarkably robust for someone with terminal cancer to a shell of herself. Weak, immobile and recluse. It was an awful and stressful time. On the 18th May she was admitted to the Marie Curie for what turned out to be her last time and then passed away on the 22nd with myself, and her mother, father and brother around her.

Directly after this in those last days of May and early June, life was almost surreal. I really just wanted to just sit and stare at a wall ( I still do ) it was a gargantuan effort to actually talk to anyone ( it sort of still is although maybe now downgraded to ‘huge’ ) but there is no space or time for that as I now have two children that are my responsibility to look after and bring up right and make sure they got out of this time with their sanity intact – mostly I suspect at the expense of my own.

.end of part 1.

Advertisements

On being a cancer patient partner – Operation Recovery

So following on from my first post ‘On being a cancer patient partner – the start‘ where I talked about when Jenn and I discovered that she had bowel cancer and some of the lessons learned from that period. I have received some good feedback on that post so hopefully this one can be a help to people as well.

February 10th of 2014 Jennifer had the operation to remove what she was now calling ‘the little motherf**ker’ and us being parents of two small children (2 and 5 at that time) that really turned out to be a very hard month that continued into March as well. She spent 10 days in hospital at which time I think the car may well have learnt to automatically drive the route to the Edinburgh Western General from our house, because I do swear that sometimes I would get there and really have no actual conscious memory of doing any driving at all.

The human mind is an amazingly complex piece of evolutionary organic tech really, from a personal point of view I had just been run over by the ‘News and Stress Lorry’ which certainly overloaded the circuits and felt like my mainframe had just shut down. Gone on unscheduled leave. Went to whatever place that wasn’t here. So I found that in this situation the automated auxiliary systems kicked in and started running the day to day things without me having oversee them to any great extent.

Looking back to that time (almost two years ago as of time of writing) I could NOT tell you any details on how I got the normal day to day stuff done: Getting out of bed, breakfast, getting the kids ready for the day, lunch, dinner, showers, kid’s baths, washing, dishes, bed times etc. Your brain and body just does it.

One thing I want to loudly acknowledge is the support I had, and still continue to have. It was something that I personally found very hard to accept at first (see ‘Lessons Learned’ below) but up front and central: my In-laws – they are are pretty awesome. Jenn’s mum who lives just around the corner from us and Jenn’s Dad who came up from London to stay throughout this period really were a tremendous help even though I know that both of them were also hit and run victims of the ‘News and Stress Lorry’.

When Jennifer was released from hospital in late February we realised that we had previously booked and paid for some time away up in Crieff Hydro and were very much in two minds as to still go or not as Jenn, recovering from major surgery, couldn’t lift anything or participate in anything that would strain her and we were very much of the mind to let it slide by. But after some thought and a brief and frank discussion we decided to just do it. This really is testament to Jennifer’s ‘not going to let this bugger stand in my way of living‘ attitude. Something that was certainly going to come to the fore in the next little while. So we went to Crieff and it was a very relaxing time despite the circumstance.

Lessons learned in this period:

Don’t be too proud to accept help:

I am an Aussie Male. I can get things done on my own, cope on my own. I have the strength and size of a mad bull and by golly I can take on anything. I do not ask for help, I do not need help, needing help is weakness and weakness is for wimpy [insert Australian derogatory terms here].

NO.

What I am really saying here is that ‘I am a lunkhead‘ (in my mind’s eye I can see Jennifer nodding…). This is such a debilitating attitude and it is something I STILL have trouble with to this day. What I have discovered is that it is human nature for others to want to help you when they see you in this situation and as humans – basic social creatures –  sometimes we just need help. Whether it be someone doing a load of washing or looking after the kids for a hour or cooking your dinner. We need to accept that help and acknowledge that help but most importantly do NOT let your internal thought processes mark it up on the chalkboard as sign of weakness. Accept that sometimes you have to get by with help and don’t let that fact weigh you down – it’s life. It’s the way we are.

Open and frank communication with your boss/work:

During this whole period I was not at work much. I am very fortunate to work for a company that has some great people in management and my boss told me he didn’t want to see me and indeed if I got on-line at work he would chase me off. But I kept him regularly updated on what was happening at home.

I think a very important part of this process is open and honest communication with your workplace. I work from home, all my bosses are in the States and we communicate via email and AV conferences mostly, and at that time I had not met a lot of them face to face, so being able to communicate effectively within those limitations is crucial.

As stated this was a stressful time for us and my personal reaction to a lot of things at this time was to just sit and stare at nowt, let alone talk about it but of course you should never assume that your bosses know what is going on. You have to make sure that they do know and that you set the expectations on your return to work, after all it is a business they run. They do give you money for you to be productive for them so it’s essential that they understand what your limitations are at this time and what to expect from you in the future so you can work together to achieve that goal.

On being a cancer patient’s partner – The Start

So this here blog does have a real purpose, well more of an idea when I first set it up, and that was to write about what it was like to be the husband of someone with cancer and the things that it entails. Not exactly a cheery subject I admit, but something that I feel I’d like to write about.

This I’ve found, is not a very easy thing to do. Getting the words out onto this screen is actually kind of tricky for a few different reasons.

One: I want to write something useful and meaningful – something that will not only help me but also might ultimately be encouraging or inspiring to others. On the other hand don’t want to sound like a self serving, condescending twunt or develop a serious case of FIGJAM “This is what you should be doing…as that’s what I did so it must work for you too – aren’t I terrific?!”

Two: writing about it obviously makes me remember and think about the situation in a lot more detail and sometimes – well, most times – it’s a really hard thing to square up to without my chest feeling like I’ve fallen under a load of bricks.

I’ve decided I’ll just start at the beginning and see where it goes. I’m not going to try to be funny, although that may happen and I’m going to try to be truthful even though that might be hard.My hope is that someone will find it useful.

I’m not going to write about the whole last two years at once all in one post, I don’t think that’s practical and would probably be quite draining (not to mention an overload on the reader) So I’m going to bite off some chunks and chew for a bit.

January 2014

Jennifer was first diagnosed with bowel cancer at the age of 39. She had been sick for a little while before that. Inconsistent pain in the stomach area had been plaguing her for about 6 months or so beforehand but she had really starting feeling it about the end of October where she was sometimes off work to just lay in bed all day as the condition was that debilitating at times. At this stage we were trying to figure out whether it was an allergy to something she was eating or drinking as we had noticed that when she drunk even one glass red wine it got a lot worse and on the food side tuna or salmon seemed to make it flare.

She had gone to the local GP practice who were not treating this with any real sense of urgency or gravity and she had some blood tests that weren’t really showing up anything unusual. Possibly, unfortunately looking at the red herring that was our own allergy theory. Looking back that is one of things that I am scratching my head at. Obviously they were taking blood for targeted tests and not an umbrella test of sorts, therefore not picking up signs or counts that would indicate cancer.

Now as people know, I love my wife to bits, but she’s stubborn and not one to go running to the doctor at the first sign of sickness or trouble. By the Gods I reckon that she could lose her right leg and she’d still baulk at going to see someone about it. It’d seem like she was bothering someone. <SCOTTISH ACCENT>Ach naw, it’s just a wee scratch, I’ve got another one there, dinnae fash yersel</SCOTTISH ACCENT> (edit: My wife would like me to point out to the reader that yes although she is Scottish, no, she doesn’t actually talk like that) so Jennifer was at that time quite content to let the GP do what they were doing. But after an excruciating Christmas (2013) and another fruitless GP visit or two later I come to the conclusion that we had to change tact. One of the GPs had even dismissed Jennifer and told her to ‘just take some Panadol’; this wasn’t getting us anywhere.

So I had to do something that was not usually very effective in our relationship. The foot came down. By this time I was having troubling recollections of my dear step father who had painfully and sadly succumbed to cancer and I told her to get her ASS back down to that practice, demand to see DIFFERENT doctor and get them to investigate whether it could be something more serious. She actually went, although I suspect it was not because of my tootsie planting (I’m sure that I only said ‘ass’ in my head – not out loud) but more of a sense of weariness and wanting to get to the bottom of this issue. Enter a doctor that agreed that something wasn’t right at all and immediately lined her up for a CT Scan to check it out.

Although I’m very much all for the free hospital system that is the NHS and I know they are doing a stand-up job within the constraints they have got, one of the best decisions I’ve ever made in my entire life was to take up the private family medical insurance scheme when I was first employed with my current employer. Due to that scheme we were able to get a CT Scan at a private hospital that next week and what turned out to be terrible results, the very next week. The appointment for the initial CT scan from the NHS didn’t come through until about the end of March – by which time I’m thoroughly convinced would have been far too late.

Sitting in that private consultants room in Murrayfield and receiving the news that Jennifer had a tumour the size of a tennis ball in her lower colon was a moment when I felt that my mind became separated from my body for just a little while. I was trying very, very hard to concentrate on what the nice but quite matter-of-fact man was saying but all I could hear was very reminiscent to a teacher in Peanuts. It was like I had cotton wool in my ears. I felt like the ground was rumbling and things were falling. Jennifer told me later that she felt pretty much the same. Well it’s not something that you’re really expecting when it comes down to it. Even if you were suspecting it you don’t really think that it was true. Not at that age. Not with two small children and a life ahead.

But there it was. Clear as day on the screen in front of us. Just under two weeks later she had an major operation to remove it. That of course was not the end of it, there was recuperation and then chemotherapy to follow. But I think that this post is long enough for now.

Lessons that I learned from this period:

Doctors don’t always know what they’re doing.

If you think that your doctor is giving you the brush off or doesn’t seem interested then get another doctor. I’m looking at you Panadol Lady. It’s always an option and it’s not ‘disloyal’. It’s your health and if you genuinely think it’s serious then for the gods sake get a second opinion, and quick.

Sometimes you have to step up and put your foot down.

By that I mean get involved in some well meaning, gentle ‘bullying’. If you think that something isn’t right and you want your partner to take a look at something from a different angle. I’m not talking about forcing your partner to perform unnatural acts – ‘make me coffee with sugar’ – ugh {{{shiver}}} – but where a previously not thought of different course of action can prevent an actual LIFE threatening situation – then do it.

If you have the chance to get private medical then take it.

This sentence speaks for itself and needs no further expounding. My wife wouldn’t be here today if not for that.

x

Chris

 

New Guitar!

Over the last few years I’ve been taking Phoebe to dancing classes on a Saturday morning and as you do you end up talking to the other parents also sitting there waiting for these childs to finish doing Flash Dance or Thriller or what ever it is they do in that other room in the church hall. This weekly event has gotten me a new friend – another dad – who happens to play guitar. Not only can he play but this bloke collects guitars, does them up, makes them real nice – it’s wonderful. I could spend DAYS at his place playing the guitars – it’s heaven.

After leaving what was my ‘music period’ way back in 1998 or so I’ve not really shown a lot of interest in ‘that sort of thing’ since. Sure – I’ve played in a few bands here in Scotland but in all honestly I’ve never really taken it very seriously at all, mainly resting on my laurels and certainly not making it a priority in my life what so ever. But just recently talking and jamming with Matthew has once again lit a wee flame of genuine interest in my favourite original interest: Guitar playing and making music.

To the point where last weekend I went and did something I’ve not done for a very long time if not ever. I bought a brand new guitar from a proper music shop. Matthew and I, putting on our bullet proof vests, took a trip over to Glasgow to Guitar Guitar.

For a little while now I’ve felt I really wanted a ‘metal’ guitar – I’ve got a very nice made in Japan Squire Fender Stratocaster which is all very well and good for most things – but I was thinking along the lines of grunty humbuckers and Floyd Roses. So I wanted to try out a LTD KH-602 model (Kirk Hammet Metallica) – and I knew that they had one in stock there and I’ll tell you right now. It. Was. Shite. It honestly felt like a £100 guitar not a £1000. Bloody awful it was – neck was sticky, frets were rough, one of the pickups wasn’t working well and it was very very …bland – bleh. So back to the wall of 100’s of guitars it went where i spotted this:

ESP LTD MH350FR
ESP LTD MH350FR

A black flame mapel translucent topped LTD model (only newly in according to the very helpful and cool sales bloke). Active EMG pickups, Floyd Rose Special, 24 XJ frets. I plugged this in and knew it was love at first sight.

IMG_9851
Unlikley looking fat bloke plays thrash metal in Glasgow guitar shop…

It’s grunty, it’s squealy, it’s ‘wheedily wheedily wheedily WAHH WAHH WAHH waaaaaaaoooooooooooooooaaaaaaaaaah!’

This thing just about plays itself. So now….it’s mine:

20151206_180625961_iOS
Happy man is happy

 

Arisaig, August 2015

I’ve lived in Scotland now for almost 10 years and there is still a lot of this country I’ve not seen. Which is kinda weird seeing as compared to Australia there isn’t a real lot to it. This year though in the beginning of August (2015) we decided to go check out some of the west coast past Fort William where we rented a cottage in Arisaig for a week with the kids, dog and the Mother in Law.

arisaig

This place was quite a suprise. We were well guided by some friends on area on what beaches to go to and things to look out for. The beaches up here are just fantastic and when the sun’s out you have a hard time believing you’re in Scotland!

20150811_133855839_iOSI’m pretty sure that our westie dog Peggy ate half of the sand up there and we brought the rest of it back in the car, but it really was a good relaxing time. You can take a boat trip out to the offshore islands and see seals, whale sharks and dolphins. The food in the dog friendly pub was quite good and Arisaig had a fantastic resturant called The Old Library were I had one of the nicest steaks I’ve had in a long, long time.

20150813_124543531_iOS