Goodbye 2012 and all the bad things about you.

We're on the edge of New Year 2013.
I'm sure I don't need to say the expected, "it's been difficult" and "I'll be glad when it's all behind me".
But it has and I will.  
New Year is the obvious time to look back at the past year and think of how you can make things better in the coming year.  It's not a difficult ask for how i'd like things to be better.  To be honest, Christmas has been a difficult period but i've had friends and family around to keep me up and I have a big party (and afro wig) to look forward to this evening....

I just want to impart a little advice to those of you that will be reading this in a hungover fug tomorrow morning, or maybe not, you good people.  
Cancer (there, I said it) is a terrible thing. I've rationalised this awful illness in my head into a flu like condition that lasted a few months and involved a few more needles.  But I know really that it was a violent invader that was trying to shut me down.  It's an illness that has the ability to turn you into a horrible, selfish person.  Because for once in my life it had to become all about me.  You have no energy to be concerned about others.  I'm sorry to those I shut out, and still have to some extent.  If you ever have to deal with this in your circle of family and friends, keep that in mind.  They don't mean it.

At any time during that Summer period, cancer could have tipped those scales and killed me.  I pushed all negative thoughts to the back of my head and spent my time thinking of what i'd do when all the treatment was over.  Now.  When i'm told there is only a 1 in a 100 chance of it ever coming back, I know it wasn't the flu and I am one of the lucky ones.  It's left a lot of scars though, both physical and mental and although some have healed there are others that are going to take a lot longer to heal.  I'm working on them.  And you can get a great product from Liberty called 'Heal Gel' that I would highly recommend for the physical ones....

TopherTalks helped me so much.  It focussed my mind and kept me busy.  So this is where I sign off from TopherTalks 2012, my blog to update people on what was happening during a very difficult period.

Wherever you are in the world I hope that you have a good one and I wish you all my love and support for all the love and support that you have given me.

Back to school.

I've got a song playing in my head that I can't get rid of. 
No it's not the John Lewis ad or Mariah Carey but an opening number from a school play from when I was about nine years old. I can't remember any of the other words apart from 'back to school, we're going back toooo school.." 
There probably weren't many more words given nine year olds had to learn it.  
I was in one of the lead roles and then I wasn't.  I'm going to have to ask mum why that was. Anyway, it's back to school day for me today after that phone call in early June that told me my levels were up and I needed to start treatment as soon as possible.
It's amazing how easy it was to turn off my email on my iPhone that day and I haven't looked at it since. Queue queasy stomach about turning it back on. But it's also surprising how normal it feels sitting on the train again heading into the office.  

I'm on a phased return for the first few months and people keep telling me that I will be surprised at how tired I will get. Lets see.

Given the nature of my role I won't be going into any detail about my return so I suppose this closes a chapter in the reason for this blog. I'm not going to close the blog though. In my notebook I've found a number of ideas for blogs that I wrote down during my first cycle of chemo so I'm going to develop them.


So,  like that troupe of nine year olds in bright clothes with backpacks on and a huge grin on their faces... "It's baaaack tooooo schoooool."

Past, present and future.

It's been a busy busy few weeks since my last blog.

It's now November, the Husband is back from his month long Australia trip.  He's full of ideas and excitement, as well as complaints about the cold here.

I'm also back from a trip to Greece where I stayed with cousins for the first week and then the Husband joined me for a little 'us' time in Thessaloniki.

Whilst in Greece I visited Delphi which is something i've wanted to do ever since I was a Latin/Classics pupil at school and we were told all about the Pythia and Oracle.  This interest then increased when studying English Lit at college and the inspiring Mr Judge told me to read the Double Tongue, a previously unpublished draft of a novel by William Golding.  I recommend it.

The ancient site is beautiful, peaceful and immense in scale when you consider when it was built.  It's one of the few ancient sites i've visited where I could actually rebuild the monuments in my mind and see what it would have looked like.  There's nothing more anticlimactic than visiting somewhere like that and just seeing piles of stones and not being inspired.

As we walked past the temples and treasuries there was the sound of an eagle overhead in the icy blue sky and pine tree gum scents hung around everywhere.  There were also annoying Russian kids running about everywhere so it wasn't perfect...

As I was walking up the hill, my right leg gave way slightly.  The nerve damage seems to be worse on the right and it lets me know when it's tired.  I have a feeling that's going to be a permanent reminder but I can cope with that.  As I mentioned above, reminders such as those about teachers, books, friends, places are what we have to inspire us and whilst I want to move on from this episode in my life as soon as I can, I still think I need to remember it and what it has taught me.

I can't say that I stared death in the face and beat it or anything as dramatic as that because I caught the illness early and it was treated effectively straight away.  But I can say that once, and only once, I opened that door in my mind onto what might happen and stumbled into that dark chamber much like the Pythia.  I didn't stay there for long because the noise was too loud but I didn't need anyone to interpret what I heard and I will remember that oracle.

To make my point though, I did it. I stood there on that hillside in Greece, having given the Russian kids my best Paddington stare to shut them up.  I saw my past, my present and there was a future. 

Moustache Nostalgia.

Life is slowly returning to normal.  As normal as it can be.
I've started back at the gym and did my first day yesterday.  I lasted about 16 minutes before my body told me that it was not impressed with me.  So i'm going to go and do a little every day rather than shock it into pulled muscles and aches.

Hair update.. it's crazy. There's a lot of it now but it's still a little downy at the sides so we don't know what colour it will eventually settle on.  I've ordered sandy blonde.  A little like the Thom Browne guy's.  The beard is coming on leaps and bounds and this leads me to the reason for today's post.......

Some of you will remember my embarrassing attempt at Movember last year.  Movember is a charity event held each year where guys grow a moustache for the month and raise money for charity.  Now.. here's the rather poignant thing.  I did this last year as a bit of fun and raised a rather respectable £660.  
It was just a bit of fun for charity and I didn't take it too seriously.

The funny/tragic/horrid twist of fate thing is that the charities that Movember supports are men's cancer charities; ie prostate and testicular cancer charities.  Cue sudden realisation of how difficult this is now to recall.  Now, given I couldn't even grow a nostril hair a couple of months ago, i'm hoping to turn that around.

I'lll be updating my progress regularly and if growth allows I may even try a bit a curl...  You don't have to donate now, you can see how I do, you obviously don't have to donate at all.  But i'll probably start hounding you if you don't.

My donation page is http://mobro.co/TopherMacDonald 

Deep breathing.

Lat night I opened a bottle of very chilled champagne, it's been in there a long time, and the Husband popped to the takeaway with a Chinese feast (chicken and cashew nuts for me).

We were toasting the fact that I saw my consultant and he's relaxed about my lung issues and they should clear themselves up over the next few months.  I won't be running any (half) marathons for a bit but I can start on that road.  It's such a huge relief.  You really don't understand how stressed out i've been about this over the last few days.  The worst case scenario in this case was pulmonary fibrosis which can be progressive and just horrid.  But it's not that so lets move on.  I'm still out of puff at the top of a staircase but that should pass.

Given the above, it wasn't the best move of the consultant to open the consultation with the words that 'the results of your lung tests were unimpressive".  Having picked the husband up off the floor, he explained that this was good news.  Further hyperventilation followed when I mentioned a hard vein on my arm and he said casually, "that's just a blood clot".  Again, it's the ok type that isn't going to give me a heart attack.

So, in summary, it's all good and I just have to have regular check ups from now on.

In 'hairwatch' I woke up with baby bed hair today with the light fluff skewed upwards on the side i'd been sleeping.  I remember it looks very sweet on my little nephew but i'm not sure that i'm really rocking the look.  Facial hair is going even crazier though.  I won't have any trouble getting into XXL anymore.

Sea view vs. Tree view

So much to tell since my last blog that I've had to write down a list of headings so that I don't forget to update on everything.

I returned yesterday from a few days staying with friends in Mallorca where I can honestly say I had the most positive few days that i've had throughout this entire period.  I was able to forget about treatments and prognoses and just be with friends. I also heard just before leaving that a friend who was also in treatment with chemo had received the all clear so it's been a good week for us survivors. Over the last month or so a lot of you will know that i've been a little withdrawn and a lot of chats/coffees that I arranged have been rescheduled with a non-commital "i'll be in touch when I feel a little better".  Well today I woke up with a much better outlook so look out for your diary invites.  

I was having such a relaxing time, the Husband and I spend the last few days in the hills in a place overlooking Palma, that I wanted to extend the trip a little.  But a consultant's appointment looms on Thursday where we have to discuss my lungs.  The day before I went away I had a lung function test which involved a guy telling me to blow, blow, blooooooow a lot and then ended with a slightly concerned look and a comment that he'd send the results up to my consultant so we could discuss them.  We'll see what that's all about in a couple of days.  In the meantime, I still have to take it easy when walking up stairs and I'm noticing that I take a lot of gulping breaths every now and then.  Something to do with oxygen transfer apparently.

In other news my hair re-growth is coming along amazingly with comments throughout the last week on a daily basis that it looked like it had grown overnight.  It's still quite downy but there is now a hairline and it's darkening a little.  In addition, the downy hair on my face has now all gone and i'm back to stubble.  But here's the thing.  It's a lot darker and thicker than it ever used to be and, in a strange ironic twist, I think that this year's 'Movember' is going to actually be a success!!  Those of you who remember my tragic attempt last year will find that rather funny.  So it seems I needed a dose of what I was raising money to support in order to try again this year.  I was so embarrassed last year that I vowed i'd never try again.  The charity gods obviously didn't like that pronouncement!

My resumed positivity has meant work has resumed on the secret project and i'm also thinking about a little information booklet or something that tells people about what to expect if they have to go through the same as me.  There is so much information that would have made things easier if i'd known them in advance.  I know everyone will have different experiences but it's the little things like "don't scratch when having bleomycin" that I found important.  If you scratch, the chemicals can gather in the area and you can get brown scars all over your skin.

One other comment to add about the idyllic hotel I mentioned earlier though...  When you book a sea view and get a tree view, you don't expect the ancient guy at reception to tell you "I don't know why they still describe it like that, twenty years ago it was a sea view..."  TripAdvisor here we come....

His name was Ross and he wore Thom Browne.

I went to see my consultant today, after having my 'end of term' scan on Tuesday, expecting him to tell me that i'd have to wait a few more days until we had the results.  

How wrong was I?  There he was with a screen full of grainy images and a report commenting on the state of my insides.  The grainy images didn't mean anything to me even when he tried to point out that that grey thing was that and that white thing was that.  I think they make it up as they go along..
But the long and the short of it is that the 8mm tumour which was on a lymph node in my stomach is gone.  Just to clarify.  That means the cancer is gone!

Do a little dance.

You can't even see the lymph node anymore either apparently.  So what he was trying to show me god only knows.

And 8mm.. what is that about?  Everyone else seems to have tumours the size of melons and I get 8mm. Not even a grape.  Well, actually, maybe the size of the grapes that used to grow at mum and dad's by the garage.  Let's just say there was never a MacDonald vintage.

So.  I'm now in 'recovery'.  I listed all the funny feelings i'd been having (leaving out the one I experienced when a very handsome, well dressed man sat at the table next to me in Village East on Tuesday) and he told me they were all to be expected.  I may never get full feeling back in the tips of my fingers and am probably going to have to wear gloves a lot more often in Winter because the nerves in my hands are a little damaged from the chemo.  Other than that everything else should sort itself out over the next few months.

I'm going to spend the next few days at the Paralympics marvelling at people who have overcome so much more than me and then i'll start getting restless again i'm sure.

Ooooh ooh, and for those wondering about the hair situation.  Still bald as a coot, as i'm sure Jim Robinson once said in neighbours, but I do have bum fluff on my top lip and chin.  It's like being a teenager all over again.

Watch this space for the next exciting update on my hair growth... 

Back to the everyday.

Today is a little different.  Not because i'm participating in the nation's Olympic hangover.  It an epic couple of weeks though wasn't it?
If I were following my chemo schedule from the past nine weeks I would currently be checking into my ward for five days of treatment.  Instead i've been out this morning to get coffee and i've sat in the park for a while having a 'think'.  Now i'm trying to decide what to do for the rest of the day.

I would like to......
Walk into town along Southbank to do some shopping for the husband's birthday later this week.
Pop into the gym for a quick workout.
Catch up with some friends for a drink.
Wander back along Southbank.

Instead, i'll probably walk to the bedroom in a minute for a snooze, wake up a little later, wander around the flat and generally get in the husband's way before heading to bed at around 9ish after an early dinner.  Living the dream...

I'm still overstretching myself and trying to do more than I can, which generally ends up with me in a heap on the bed panting and the husband standing over me tutting and making the comparison that "you think you're Superman, but you're more like Frank Spencer at the moment."  He's right and it's driving me insane but the more I push myself too early the longer it's going to take to recover so i'm just going to have to accept that i'm a little useless for a while.

But, I'm hoping that my body will notice that i'm not in treatment this week and realise it's all over and start the process of removing what's left of the chemicals in my body.  Who knows what new side effects that will produce but i'll let you know.

A Request.

It's Sunday night.  The 100m final is over and the UK is basking in the glow of Olympic gold and readying itself for another week of work or summer holidays.


I'm on the eve of my final week of treatment.  On Tuesday I have five hours of Bleomycin pumped into me (and pooling in my big toes it seems) and then that's it.  Life moves on.  I walk a little lopsided for the rest of it and for the next few months I rest and recover.


But that's not what i'm thinking.  I was never supposed to have this cancer in the first place.  It chose me and I was lucky enough to find where it was hiding before it was too late.  Obviously there were a few specialists and a lot of beeping equipment involved but you know by now that my narrative is short and to the point so go with me on this.


I've heard and read the statistics and I'll forever wear shorts and vests with yellow stripes on them from now on in the gym.  But what if it's not over on Tuesday?  
Now the positive thinkers and healers amongst you will be screaming at me now for letting my positive attitude slip.  How could I possibly think in such a way?  
Don't get me wrong.  My coping strategy is a pillar of fire that courses around my entire body and up my spine into my head.  That's what I imagine I have in there killing off all the nasties and I can tell you the Olympic cauldron has nothing on the amount of energy i've been pumping into it.  I'm never going to turn it off either.  
But just like the chemo drugs needed some cancer to kill off, my positive attitude needs even the smallest doubt to incinerate.  I'm a lawyer by trade, all I did every day was calculate what might happen and how to avoid it.  That's not going to change so those thoughts are there even in their weakest form..


I suppose what i'm asking is that if there is anything / anyone out there, no matter what you are called god, fate, allah whatever.  


Please don't let this come back.


Now lets get on with thrashing the Aussies in the medals table you Brits....

I think I know what palpitations are now.

It's midday and i'm lying on the bed.  Not doing much. 
I really should move the TV in from the spare bedroom so I can watch the Olympics but then i'm afraid I may never leave this room!  
You see, I think i've overstretched myself a little both physically and mentally.  As i've already mentioned, I only have two out patient sessions left and my consultant has told me that all my blood results are good. 
In my head that means:  It's done, get on with things.  
My body is telling me something totally different.  Just the effort of having a shower in the morning has me lying on the bed for ten minutes afterwards to recover.  The husband is telling me that's because the shower is too hot.  He's probably right but i've got it in my head that the hotter it is the more i'll sweat so the more of the horrid toxins i'll get rid of.  I tried that theory with a very hot bath yesterday to near disastrous consequences!  I did sweat a lot though.


And then today.. you'll see a pattern emerging here...
I took delivery of a new console table for the hallway, i've only been looking for one for five years.  If any of you know our hallway, you'll know that it's more of a wine cellar, so I decided to move a few boxes of shiraz around.  I think I know what palpitations are now.


So now i'm back on the bed with my survival kit around me.  Laptop, jug of iced water, glass of dandelion and burdock (amazing to sip and take away the chemo taste), some lip balm (currently using Kiehls Facial Fuel) and some Jaffa Cakes.  I'm too tired to even consider moving the TV. 


Here comes the thoughtful bit:


It's odd lying here, listening to the sounds of the world outside the window and knowing that life is going on as it always has been for everyone else.  Living so centrally means that there's no escaping this, especially when the restaurant downstairs is having it's deliveries at 5am during the Olympics..  In April I was part of all of that, rolling out of bed early(ish) on a Monday and heading for the nearest coffee shop.  Now i've been transplanted to a place where I just watch it from a distance.   
It's a bit like being one of Marley's ghosts.  You experience the world that you are inhabiting but can't take part in it.  People walk past not really noticing you and you don't want to impinge on their world with your condition.  That then leads you to wonder what part you will take in it when you do return.  Will I be a changed man or will I just slip into things as before?  It's far too early to tell on that front but the ghost of Topher present and past has already taught me some valuable lessons.


The husband is going to have to tackle the flat pack.  Lord help us!  

34mins.

Final day as an in patient today.
I've seen the Olympic Torch go past on the Thames and i'm counting down the minutes on Baxter (currently 47) until I can be unhooked and go home.  After this I only have two more Tuesday 5 hour sessions to go.  Then I have an 'end of term' scan, as my consultant calls it, to check that all the bad cells have really been killed off.
This week has been pretty hard and I can't get rid of the horrid metallic taste in my mouth that's meaning i'm not really eating as much as I should be.  But i'm sure some good home cooked food from the Husband will sort that out when I get home.


I'm waiting until everything is signed off before I start making any plans for the future.  It was all supposed to be sorted after the operation in April but the little bugger made a run for it so no counting chickens.


I'm also pretty tired all the time but that's to be expected when you've  been pumped full of poisons for last two months.  Two months already, it really seems to have flown by.  Not sure whether that's been in a daze or just denial.  But I am sure that it's not flown by for everyone that's had to sit next to me during that period.  Thank you.


I've also finished first bit of the project, it's helped to pass the time as well but who knows if it'll ever see the light of day.


Right, time to pack up my room now for clear out and collect my injection for tomorrow.  It's a little like a diabetes injection but with a longer needle.  I need to do it the day after treatment as a booster for my blood cells.  I've elected to do it myself and this is one thing that the Husband will not help me with.  He is not a needle man.  Wuss.


Signing off for now.  34 mins....

What's the Russian for "Apply your own bloody suntan lotion.."?

Summer's here!
I just took a quick walk down Bermondsey St with a coffee and it's like there was an explosion in a shorts and vest store.  If you've never been to my manor before then you may not know that it's an area favoured by the beautiful young (and older) men of the city.  The street itself is peppered with trendy bars, restaurants and coffee shops so you had the option of a modern day Austen style promenade, and there's also Tanner St park so if all that has tired you out you can always flop down on the grass and take your shirt off.  I have a feeling a few of those there today had their shirts off in Vauxhall earlier..
And to top it all off there are tennis courts too so you can feel like you've done a little exercise by watching others do it.


I, on the other hand, have been working the colonial look, with my khaki chinos, floaty linen shirt and straw hat.  Sir Michael is my inspiration.


So much for all the Burkman Bros. and Scotch and Soda that I invested in earlier this year...


But onto the more serious matters.  Reading all the material about my condition i'm told that I should avoid direct sunlight because I will be very sensitive to it during my treatment and for a while afterwards.  In my usual way I have been questioning this given the mini heatwave that has we are about to enjoy. 


What does 'more sensitive' mean?

• Can I go out with factor 50 all over me or is my skin more sensitive despite this?
• What are the effects if I accidentally forget to spf my arms and roll my sleeves up?
• Is it just sensitivity and burning or is there increased risk of melanomas?
• Does this mean absolutely no sun at all?

Well here's an answer I prepared earlier.  Vitamin D is still very important so I shouldn't be holing myself up indoors all day, but I should be treating myself a little like you would a good glass of sauvignon at a picnic.  Leaving it in direct sunlight is not going to do it any good so make sure it's in the shade (but not for too long as it's still going to get warm) and it should be ok.

If you poke it....

It's been a week or so since my last post so thought it was about time to update things.
Well, on the chemo front, i'm sitting here hooked up to Baxter for the final five hours of Bleomycin which will finish my second course.  The second round hit me a little more than I though,  more psychologically than physically.   I think that's because physically i'm feeling pretty good but the thought of having to go through another three weeks of having poisons pumped into me is not attractive.
Whilst in hospital as an in patient for the last five days I just wanted to get out and i'm thinking of asking them to just knock me out for the next session so I wake up when it's all done!!  The coward's way out I suppose, like asking for local anaesthetic during a tattoo..


But, similarly, i'm not going to get 'any stripes' for being a martyr either and stoically enduring this without help.


I had a little bit of a scare over the weekend with an unexplained pain in my neck... There were tears and thoughts that things had spread..  An ultrasound and check up with my specialist yesterday, diagnosed nothing.  Just a bit of inflammation and a treatment plan of "stop touching it, of course it'll hurt if you keep poking it".  Story of my life.


I'm rocking the Lex Luthor look and have only worn a cap out in public once and that was because this bl**dy weather is making my head cold!  That didn't stop me buying the new session G-Star straw hat I saw the other day though.  Who knew hats were in.  And for anyone else in my position, a very nice old lady gave me a tip whilst I was in the waiting room today.  Rub in a little olive oil to help with regrowth... but remember not to just tip it out of the bottle onto the top of your head as that can be a 'little messy'.  If the Husband is reading this now he'll be sprinting to the kitchen to hide all his gourmet oils from my grasp, probably just to save me from myself in case I pick up the chilli olive oil by mistake!


On another note, i'm no longer technically pregnant, my alpha feto proteins are now back to normal levels and my pregnancy hormone is undetectable.  Looks like i'm going to have to take the Elton and Furnish route .  That thud you just heard was mum hitting the floor.


Anyways, time to carry on with my new project, all top secret at the moment but i'll let you know when i'm ready to report on it.  It's good to keep the followers in suspense.

Channelling Ilia and Lex.

I'm going to reveal a really embarrassing fact about myself now.  

No Stephen, I did not vote for Brian Paddick in the Mayoral elections.

Now that's out of the way I can let you into my secret.

I'm a bit of a Sci Fi geek.  I've always had a thing for Superman.  Just ask the facilities guys at WB who were constantly changing the posters on my walls, and I wore the black arm band  back when he died years ago.  I admit it. Nothing can embarrass me now.

I also once went to a back to back screening of six Star Trek films at the local multiplex when I was a student.  It was awesome.

So what has me thinking about this?  Well firstly, my fantastic PT bought me a Superman comic book yesterday when he came to visit.  I'm trying not to read it too fast and savour it but I know as soon as I'm finished i'm going to be off to the Forbidden Planet store to stock up on more.

The second is related to 'channelling Ilia'.  Go on, Google the name and I think you'll get at what i'm trying to say but can't really bring myself to post my own picture.  

What is it about some of us that we would prefer to exist in our minds in a fantastical reality where anything can happen?

I think we all know the answer to that.

Last night I was having real trouble sleeping and to help relax I started thinking about how I would remodel my flat if  I bought it.  I had a fantastic time installing kitchen islands, wine fridges and and ripping off plaster to reveal the original brickwork.  Then I fell asleep.  Who needs superheroes?

I then woke up again this morning to the reality of my situation, a nagging headache, painful stomach and an even patchier head.  It's chilly up there without coverage you know.  

So you know what I did?  I didn't fantasise about a life where I had a Clark Kent kiss curl but I trooped off to the local barber and a had a Lex Luthor cut.  

I also logged onto Mr Porter and bought a fedora.  It'll be my cape.

Down but not out.

So, as  I said on Monday, my test results are all good and my specialist said yesterday that I could not be doing any better.  I should be ecstatic but i'm actually probably at my lowest ebb since all this started.


The Beckham look has started to get patchy and i'm really really tired.  Every time I look down at my left arm I see this hornet's sting burying itself into my skin and pumping poison into me.  I think the thing is that although there is an end in sight, there's still a long way to go.  It's like that final couple of kilometres in the half marathons that i've done.  You can see the finish line, you can see everyone else crossing it but your lungs are burning and your legs feel like a tonne each and you just want to be there immediately.


I'll be there soon.


I've written a little ditty too....


Just for now.

Please don't come and visit me
I'd prefer it if you don't
I'm not saying please unfriend me
I'd be grateful if you don't.
But it's just I'm not at my best right now
It's all a bit of a strain
And to be honest with all these treatments
I'm looking a little bit plain.

Don't worry though, everything's fine
And I'm up for a full recovery
But just for the next few weeks
Im going to be a little bit wobbly.

My gatekeeper will be in touch
That's if he hasn't already
There'll be a spreadsheet with your name on it
Letting you know when I'm more steady.

I don't mean to tempt fate.

But....
My tumour markers are back to normal.  This is good.

At least it's Wimbledon week two

Cycle two starts tomorrow.  That means another five days in hospital hooked up to Baxter and intense boredom.  No matter how many magazines, e-books or downloads i've prepared there is the constant sense of not wanting to be where you are.  I suppose I should want to be there because it's treating me but i'm sure you understand where i'm coming from.


I've developed a bit of a routine over the last couple of weeks to avoid the boredom at home. Not that anyone could be bored with the Husband 'working from home'... There's always Radio 4  to listen to or and episode of Frasier to watch.  I kid you not.  That is the staple media diet in our household.  
I wake up around 9am-ish and i'm presented with a bowl of fruit salad.  I shower, dress and then pop to the coffee shop downstairs for a medium latte.  I then wander down the street, weather permitting, and sit in the park to watch the tennis players and dog walkers for a while.  It's nice to think that normal life is continuing for all these people.  Obviously that isn't a given though, who knows what excitements or turmoils could be going on in their lives that doesn't show.  I like to think that it's all excitement.


This realisation of other's lives was underlined to me the other day when meeting a friend who told me about someone I know who had cancer some years ago but still had to work during their treatment because they were self employed and had no other income or support during that period.  That's just rubbish.  Again, i'm reminded of just how lucky I am.  The rest of my days is spent just mooching around, updating this blog, and snoozing which to some would seem idyllic rather than boring.  So, i'll be thinking of ways of 'giving something back' when all this is done.
This also reminds me of a retweet from a testicular cancer awareness charity that i'm following, www.checkemlads.com :


"Are you not looking forward to going to work tomorrow just think someone somewhere is having chemo wishing they could go to work."

Campanology and Carrot Juice

Good morning.  Well it was morning when I started drafting this and then I had a little snooze so it's a little bit later now.
I'm feeling pretty tired at the moment but that's the main side effect and I keep having to tell myself that i'm bl**dy lucky.
Other side effects have included:

• Slight nausea on day one of treatment but nice big white pills seem to have dealt with that.
• A slight digestion problem during treatment (scented candles, scented candles...)
• A tiny bit of tinnitus, but i've developed a way of zoning it out and  slowly turning the volume down until it disappears.  That might sound odd but I treat it like when speakers start screeching due to feedback and you quickly turn the volume down until it stops.   It seems to work.
• The hair loss.  Pic of me channelling Beckham below.

The final one is something that i'm trying to admit isn't happening.  If you know me you'll know that it's a harrowing prospect.... even more than the hair loss.  White wine seems to be changing it's taste!! What used to be fresh and crisp is now seeming tart and acidic.  Now, i'm allowed to drink.  In moderation.  So i'm not going to pass up that opportunity, but i'm getting a little scared to even try it in case it puts me off altogether.


What to do?


Well i've come up with my campanology strategy, so I suppose it's time to look at my drinking strategy.  I've watched enough Kirsty and Phil lately to know that it's all about compromise but again, if you know me, that's not really something i'm into either.  I'm an all or nothing kind of guy.


That last sentence has just clarified it all for me!   Well that sentence and a quick trip to the kitchen for a glass of water.
Really, you are reading realisation as it happens.  I obviously can't have it all in the present circumstances so it's going to be nothing.  The clincher was opening the fridge and seeing a bottle of carrot juice that a friend brought over for dinner last night.  Usually it would be an Argentinian Malbec but he knew better.  And so should I.  There will be plenty of time for martinis and chardonnays later in the year. 


Here's to mocktails! 

The flowers are from my friend too.  Thank you.

Note to Delilah. Remind yourself of Judges 16:22

The first few started coming out this morning.. It started with my beard hairs . There's one stuck to my thumb as I type this out. It's just sitting there like a slug that won't be flicked away. Partly because it's stuck fast and partly because you can't bring yourself to fully touch it's slimy repulsive body.
But I suppose this is the start of it.   I was left with hands caked with strands after putting some wax in later on in the morning.
I was told it would take about three weeks after treatment started before I lost my hair. I'm just over two weeks in now.
For the past few days I've been randomly tugging at my hair and feeling smug that all I felt was pain. Only 70% lose it so there's a chance.. And nana didn't lose hers. There's another chance....

Every tiny tug today produces a few more strands.

I don't want this to happen.
(imagine that said in a slightly strangled way with lashings of helplessness and you're with me now.)
Thanks for sharing the moment. Now let's move on.

I suppose the practicalities are twofold.   I'll need some new headwear.  I'd thought about sorting this a few weeks ago but desperate hope triumphed over reason; and I'll need to think about whether to get a buzz cut to minimise the effect of it all falling out.
I've always wanted to try that style so lets make hay and all that.

And on a better note. The final stage of my first cycle of chemo finishes today. Cue hot sweats and headaches but who cares. Strike one against the little bugger.

The English patient

I've been out of hospital for a week now and it all seems to have gone very quickly and i've done rather a lot.  This is making me think about the treatment, side effects, what i've been told and the reality of it all.

To be honest, I'm not feeling any worse at the moment than if I had a bit of a cold.  But I know that's not the case from my specialist and sister.  My ickle sis has nearly finished her medical degree and is very clever.  Not as clever as me obviously but that's the curse of being the little sis isn't it?  

As i've mentioned, because I have hardly any white blood cells in my system the everyday bugs that roam my system are poised to attack at any minute and, if they do, I can't fight it without more antibiotics and probably having to go back into hospital early.   If it progresses and gets worse then you're talking blood infections and transfusions, so you can see what the risks of just a little illness are.

Problem with that is i'm trying to carry on as normal because that's how I'm feeling.  It's probably an acceptance thing, in that the more I think I might be ill the more i'll react to it.  It's also probably an 'English' thing.  You know how it is, 'let's not make a fuss unless we need to'.  The problem with the English attitude is that it could do me a lot of harm.  

It probably sounds odd but I also feel a little guilty just sitting around when there must be people in treatment that aren't able to do anything and wish they could.  In a couple of weeks I may also be regretting not doing anything when I myself am unable to if the treatment side effects increase.

So what do I do?  Contain myself in the apartment with books and antiques shows, or make the most of the this and head out for a stroll?  That all sounds rather dramatic for just a stroll doesn't it?

The answer will probably lie in the husband (ps. i'm going to be capitalising him from now on as I suppose he has been become pretty defined) and anyway, Olivier's Henry V has just appeared on TV so a decision has been made for me for a few hours.  Once more unto the breach dear friends... 

Apologies Mr Boyce.

Released into Mum's care

Mum and Dad arrived on Monday to come and stay for a few days.  Always lovely to see them and there was the added treat that we had tickets to the Royal Enclosure at Ascot for Thursday for her birthday.

After my little dip on Tuesday I was the first to admit that this was a little touch and go and fingers and toes were crossed that I would have the energy on Thursday morning to go.  The issue is not just fatigue but because my white blood count is very low due to the chemo I am at high risk of infection at the moment.  Not infection from people around me but the ones that we all have on a daily basis but just fight off as a matter of routine.

Luckily I was feeling great in the morning and we had an amazing time, was shattered by home time but i'll take that.  I also had a great win on my last bet too so that kept the endorphins flowing.

On the way home I remembered that the Husband and I were supposed to be flying off to Barcelona for a long weekend this weekend and became a little grumpy and belligerent that I felt I would have been fine to go.

Don't speak too soon though Topher.   I woke up this morning with a slight sore throat.  I called my oncologist because he said to let him know about any illness.  He asked me to go to the hospital straight away for a check up and blood count check.  Reality check more like.

I have slightly infected tonsils and he was all for admitting me for a course of antibiotics but I think the fact that mum was there swayed him to discharge me into his care with strong pills and a direction that I rest up.  So here I am resting up.  Feel totally fine but have to be extremely careful for a week for so.

But my mum and dad are here and mum's bought me a banana and chocolate loaf so it can't all be bad.

The humble ibuprofen

I was in today for a five hour dose of Bleomycin.  This is a type of antibiotic that is poisonous to the type of cancer cells that I have.  It binds to them and stops them from dividing.  Go get the little bugger Bleomycin!  


I was in a day ward for six hours whilst being infused and took my usual gung ho attitude with me when I left.  But the pride before a fall adage rings true here.  Thinking i'd got away scot free I bounded out to a cab to travel home with my cousin.  That's when it all unwound a little.  I started shivering and shaking and just felt atrocious.  By the time I was home it was straight to bed and a couple of hours of constant temperature checking thinking that I had an infection.  Luckily that wasn't the case, just a reaction to the drug and me not taking it easy.  Lesson learnt.  I even posted an ominous, I don't feel too well message, on Facebook.  


I then remembered what my oncology sister said a little before I left the ward: "don't think twice about having an ibuprofen if you need one."  So I called for the husband to my bed in my weakened and dramatic state, he was rather worried, and asked for a couple of ibuprofen thinking anything that might provide relief would be a blessing.  Here I am a couple of hours later, bright as a button and tapping away.  I'll try not to cry wolf so readily again.  Apologies all but Mrs Wooton would have been proud of my amateur dramatics.


Bleomycin also isn't the nausea inducing drug either, although I don't really seem to be suffering too much from that, I think I may be so used to functioning with a gin martini hangover that I don't notice!  Kids! don't try this preventative remedy at home.


I now have a week off until my next day treatment next Tuesday.  Time to start downloading Homeland.


ps. the information that i'm mentioning regarding treatment is from canceresearch.org.uk which is really an amazing mine of information for people in treatment and those who want to know a little bit more, so this attribution is to them.

Losing voice or just keeping a low profile?

18.06.12
Hello. Hello.
I've not really had much inspiration for the blog over the last couple of days, hence the lack of posts.  I'm back at home, which is obviously great and I can do what I want in my own time.
It's not been the best of times as i've been very tired, losing my voice and farting and peeing constantly... I told you this was going to be direct (scented candles, tick..).  


At least i'm not hooked up to Baxter so I can roam around and constantly rearrange the coffee table.  Vanity Fair is currently winning the contest over Time. To those of you who are wondering where 'Baxter' came from; it's the manufacturer's name of the pump machine that delivers all my chemicals.  Not terribly original but inspiration wasn't really bubbling the first time I saw the thing being wheeled into my room.


To be honest, it is getting to the stage where i'm having to address in my own head whether i'm 'sick' or just 'in treatment'.  There's no doubting that i'm in treatment as I have pin pricks all over my arms and a gallon of different chemicals flooding through my body causing random effects.  It's also treating something though and that's what i'm trying to ignore.  Feeling like I do today, I can't ignore that i'm also sick and there is something that I have to get out of me.   I'm not going to start on the 'why me?' or 'it's not fair' route as i've told you all already that's not something my dad or I would abide by, but I am going to try and get through this the best way that I can.  That means really positive thinking and no down time. So lets get on with it.  


I've also received a beautiful bunch of aussie inspired flowers with eucalyptus abounding with bright reds and oranges which are lifting my spirits.


Of course, Royal Ascot starts tomorrow so time to start checking the form... shhhh don't tell the husband.

Unhooked and Home

I've finished my first round of chemo and just arrived home.  Thanks to a good friend who came to pick me up and coped with the helium balloons bouncing around in the back of the car as he drove.


All seems to be going well, nausea is under control.  Feel a little light headed but suppose that's not uncommon given i've not really left my room for five days.  I have a list of instructions to follow and obviously a host of pills to take.  Cue a spreadsheet from the husband..  
I also have to monitor my temperature for any infections and watch what I eat.  This means no sushi.. one of the biggest downsides so far.  But red meat and beetroot is on the menu for the red blood cells.  Bring on the steak.


But it's good to be home, just knowing that things are normal and all the things I want are around me.  Last night was difficult as I knew i'd be home the next day and just had to wait.  I think it was the 'twitchy' side effect i'd been told to expect and i've realised I need to rationalise it and keep it under check or it could easily run away with me.  Each sound seems a little louder and my mind jumps from subject to subject meaning that I get confused a little.  So stay with me, i'll get to the point, I may just say the same thing a few times before I get there.


Anyway, time for an early dinner and snoozing on the sofa before bed.  Can't get better.  

Survival Kit and Sleeping

15.06.12 am
So, we're more than half way through the first  round of chemo and from the expected symptoms i've only had a little nausea that was quickly sorted both by medication and the bottles of ginger steeped water that the Husband brings in each day.  I was dreading this to be honest but it's actually makes the unbelievable amount of water that i'm drinking, quite acceptable.
Other symptoms were the itchiness and inability to sleep because of the steroids.  Now as anyone who knows me would be able to tell you, I would sleep through a nuclear war so there have been no problems on that front, much to the surprise of my oncology sister.  I've even has a couple of afternoon Topher naps.
Minor side effect is that the steroids have produced a little puffiness of the face... where are my cheekbones?!!!


Now that i'm four days in, i'm settling into the routine a little and working out what I need and don't need in terms of mental and physical survival whilst in here.  The nurses have already commented on my surfeit of technological aids (MacBook, iPad, iPhone and Kindle), I have to admit the iPad hasn't' really made much of an outing yet but the Kindle is invaluable.  I'd like to admit I'm halfway through Crime and Punishment (again) but actually it's just The Hunger Games.  You'd be surprised how short your concentration span is when Baxter is whirring away next to you, oh, and you have to jump up every 20minutes or so to go to the toilet.


Physically i'm keeping up the potions and lotions routine and was aided incredibly in this by two amazing friends who visited yesterday and brought every type of toiletry that could be needed by someone having my treatment, as well as some other treats, so i'm all set for the duration and my nails will be indestructible!


I know there's still a lot more to go through and it's not all going to be this plain sailing but for now lets just take the wins where we can.


Oh, and it's my cute and handsome nephew's birthday today so Happy Birthday to you my little man.

Proof of my snoozing ability just provided by the Husband

Don't ignore Baxter

14.06.12  am

The blog went live yesterday and I posted it on my Twitter and Facebook.  It had the effect it needed by updating those who knew but also informing those who didn’t.  

To be honest, i’d been trying to keep it all low profile whilst the additional tests were underway so very few people at work and just a very small circle of close friends knew.  When I was in other social situations I had three ways of coping:

Ignore it;

tell people outright; or

ask the husband to do the explaining.  

You’d be amazing how many times I defaulted to option three.  Telling people myself felt like a kind of ‘coming out’ again.  Admitting something to others, and also myself, that I knew would upset and create a difficult situation for some.  I apologise to anyone reading this blog that thought I should have told them too but as my dad says, one of the two biggest lessons he’s taught me: “life isn’t fair so get over it”.

But it also throws curve balls at you that pique your interest which is what happened yesterday and made me think a couple of times, 'you've still got it'.   More on that later.

I've also put on three kilos in the past two days through water retention on the steroids.  Time for some brisk walks.

These blogs are deliberately short and bite size but i’ve already got a list as long as my arm of topics that I want to explore so keep on checking in.  Some will be humorous (in my dark style), some educational and reminders for the boys out there about checking themselves and some just random brain dumps.

Ok, Baxter is beeping so time for a new bag and some platinum.  It's not as glamorous having it on the inside rather than out.

Time to think

13.06.12
It’s a day of 10 hours of treatment today.  Time to expect more nausea and apparently an itchy anxious feeling. But currently feeling 200 times better than last night. Bring on the downloads, Vanity Fairs and BBC antiques programming.   Just been hooked up and none of the itchy feeling yet.  Maybe one side effect i’m not going to have.  I’ve also had an increase in anti nausea drugs and some stuff to protect my stomach as a result.  One of the pills matched the colour of my t-shirt perfectly.  Yesterday the t-shirt matched the colour of the drip bag covering the ‘poison’.  I feel a theme coming on. My first visitor has also just left.  Slightly awkward but so good to have a little normality to proceedings.  I have this nagging feeling that people will now look at me for signs of illness  and then engage on the normal level.  I don’t blame them for that at all.  At the moment i’d hope that there is no noticeable difference but have to acknowledge in the weeks to come that this will not be the case. I’m a few hours into the treatment now and, fingers crossed, no itching or anxiety.  I’ve also had time to set up this blog.  Yesterday’s entry was typed randomly on my laptop in the middle of the night so I could just cut and paste. 8pm and the flush drip has come out, i’m unhooked and i’m done for the day.  No itchy feeling. Yay.  Day two ticked off already.  Yay. Have been receiving the best texts and emails from family and friends.  It all helps to keep me upbeat and reminds me that the normal world is carrying on out there.  That includes a text from a friend with a picture of her office desk just in case I was starting to miss mine!

Day One - Presents for mum and me

12.06.12

I arrived today for first day of chemo.  I had managed to keep most of the detail to the back of my mind and kept the ‘it’ll be fine’ face on.   Packaging everything into a box is great as an avoidance technique but unfortunately the wrapping on that box came undone at 1am this morning as a I rushed to the bathroom to throw up.  My ‘it’ll be fine’ mind had heard only ‘nausea’ not ‘vomiting’ and I was working under the impression that i’d just be suffering from the equivalent of a martini fuelled duvet weekend.  Sadly not, standing there in front of that mirror brought it all home.  I’m here for the long run and although they are going to kill the thing in me, they are going to do some pretty extreme things to my body in order to do it.

It’s also mum’s 60th today which is very sh*tty of life.  Husband and I went down at the weekend and we had a family celebration with brothers and partners, sis and niece and nephew.  There was no treading on egg shells and a great meal and a beautiful time had by all. I was also able to show my pregnancy test party trick. 

It’s 1am and I feel i’ve fallen at the first hurdle.  The plan was that I was asleep now waking up nice and fresh ready to take on the next day, but instead i’m tapping at my computer thinking I don’t want to go to sleep and if I exhaust myself now maybe i’ll just sleep through the treatment tomorrow.


But before that. Happy Birthday to my mum. Cx

My story and pregnancy to date...

I've always been confident about my health and future (ask YouGov, i'm always giving myself at least an 8 out of 10).  I have a fitness nut husband who makes sure I eat extremely well and who attempts to limit my martini intake, and I have a fantastic PT who tones up the saggy edges and pushes me to run when I don't want to.

Three months ago, on holiday in Cyprus, I felt really uncomfortable and sore when pulling on underwear and swimming shorts.  Thank god I don't wear Speedos or i'd have been in agony!

At that stage, checking myself, I didn't notice anything unusual.  A week after getting home I did though.  Obviously lumpy and not a nice feeling.  Guys. You will know when there is something wrong.  Don't ignore it.

It all happened rather quickly after that.  I went to see a GP who referred me to a specialist and on the day of the appointment I was sent straight to ultrasound with the specialist asking the department to call him straight away with the results.   Minor panic set in.

The results came back and I was then sent down for blood tests, a CT scan and told i'd be receiving an inpatient surgery appointment within the next five days.  Major panic set in.

My husband was away on a stag weekend so I had to make the slightly traumatic call asking him to come back.  He was on the next train straight away.

The surgery was a day case and I was then at home recovering for a couple of weeks thinking that i'd had a near miss but it would now all be fine.

Routine appointments were booked and at the first one it was mentioned that a scan had shown up slightly higher tumour marker levels (these are elevated levels of certain hormones which may be secreted by tumours).  The levels were minor so I carried on as usual.  But it's weird how the closer it got to results day, the stress levels rose.  My job isn't the most stress free of roles, so I took a little extra time.  You've no idea how much I wanted to tell that pushy manager the real reason his work hadn't been done as quickly as usual.  You sometimes need time to step back and just breathe.

The results were inconclusive so more blood tests.  Stupidly I charged ahead and thought that if nothing had shown up conclusively by now then it never was.  So I went back into the office and by 2pm I was leaving, having had a call from my oncologist telling me I needed to go in for chemotherapy as soon as I could.  Cue more traumatic calls and a little meltdown which was probably more self indulgent than anything else.

Now i'm here hooked up to my new best friend Baxter and waiting for the killer chemicals to kill the little bastard in me.

Because I had testicular cancer to start with, the new cancer is also testicular and is 95% treatable through chemo so the odds are more than with me.  Anyone who's ever been to the races with me will know that i'm good with the odds.

The other side effect of testicular cancer and one of the tumour markers they look for is gonadatropin.  This is the pregnancy hormone.  Well mine is off the chart and here's the proof.  No need for me to wait two minutes, this was immediate.  I've always liked Barnaby as a name.