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.

It'll be fine

This is my first post on this blog created to keep people up to date on my treatment and thoughts.  If you know me then you'll know that at times it will be very direct and blunt but at other times it will be light and rather random.

If you don't know me, or we haven't been in touch recently, here's a summary:

I'm a 34 year old living in London with a great life, family and job.  Not everything's perfect but where would be the fun in that?

In April 2012 I was diagnosed with testicular cancer and I had immediate surgery.  Unfortunately the little bugger had spread little so i've just started my first of three rounds of chemotherapy.  It's going to mean a few months off work so plenty of time for introspection and updates.

If you do know me though, you know "it'll be fine".

This St Christopher was given to me by my godfather at my christening and i'll be wearing it throughout my treatment.