#4 The Long Wait - Two weeks in a Love Island Timezone

Following the diagnosis we went and picked up our lovely dog Bella, went to a dog friendly pub in Yateley for lunch and a quick pint then walked Bella round one of our favourite local beauty spots Horseshoe lake.  I remember us both trying to be positive and take the positives from what the doctor had told us.  Afterwards we went our separate ways to do the school runs then later I took Poppy to Gymnastics.  I hadn't wanted to tell my Dad or brothers during work hours so I called them during Poppy's Gymnastics class - calling to tell my Dad was one of the hardest calls I've ever had to make.  I could only imagine the pain he would go through - I could think of nothing worse than one of our children developing something like this - and this would undoubtedly open old and deep scars he'd since put to bed from supporting Mum for all that time.  He knows what Cancer is about in all its evil forms and what I am so naively facing into without a clue. 

Despite this there is no one I’d rather have by my side in a crisis than my Dad - from the time I broke my brothers collar bone to an elderly neighbour calling us in the middle of the night thinking she had a burglar downstairs - he is as cool, calm and collected as they come in a crisis with an enviable ability to strip emotion out drilled into him through his profession.  As I choked back the tears I recall him telling me to calm down, he said listen all you know is that you have a growth - it might be benign it might be malignant.  If its malignant it might not have spread and if you need chemo then there aren't many people with more experience of supporting it than me.  He calmly spoke about how I should try to take it one step at a time and deal with the facts - and to try and build a mental brick wall around it.  He also said that cancer doctors often err on the side of caution so given my doctor had said it looks treatable that he wouldn't say that lightly.  I came off the call feeling loads better and mentally stronger as if usually the case with a Dad 'pep talk'.

My brothers called back and again they were both tough calls - telling them was heart-breaking.  I told them that hearing that they would have to have a camera up their bums too was the only thing had made me laugh all day - clearly I hope and am sure that they will come back clear - but it made me laugh at the time having been through the experience.     

The following morning I walked Freya to school, and having told our neighbour on the way to school cried the entire way home on her shoulder.  What set me off was as I kissed Freya goodbye, hugged her and told her I love her - then I recall standing in the playground looking round and wondering if I'd be here in a year, or even Christmas to do this for our amazing kids whom we love beyond words.  

Once I got home I called my boss who was exceptionally supportive as expected, I couldn't even contemplate thinking about work.  In terms of my head I just wanted to spend time with my family.  I also recall thinking about the practical things such as

1. Finances - how would Julie be financially if I died, I ran through everything to satisy myself she would be
2. Our house.  We had recently finished a major extension however there was painting to be finished and spotlights hanging down - I remember thinking I can't leave our house in this state lol
3. Passwords lol If anything would happen I needed to ensure that Julie could access everything she needed to electronically including all our photos

Now to the bystander this sounds over-dramatic and dark - and I tend to agree - but the 'C' word has that effect! 

That Friday we were going on the annual kids football club camping trip with 12 families, Julie asked if I still wanted to go and I said of course the kids love it I wouldn't miss it for anything.  We went and it was the best decision - we all had a great time and it allowed me to forget my diagnosis at times.  Just as we arrived my doctors PA called to book my CT and MRI in for the following Wednesday.  I told a few friends - all of whom were incredible positive and supportive - but we just enjoyed the weekend away.  One friend mentioned that they were planning on booking the trip for the following year - ironically on 4th July (the anniversary of my colonoscopy) and I joked if I'm still here I’d love to come - if not I'd be there in spirit ha ha     

The two weeks following diagnosis were without doubt two of the worst weeks of my life outside losing Mum and our miscarriage.  I lost 3Kg's in the first ten days post diagnosis (this wasn't the C, my weight was stable before and it has stabilised since) presumably from the stress.  My head just felt like a bowl of spaghetti - I was literally all over the place.  The diagnosis spectrum (in my mind) was somewhere between the growth being benign and me being riddled with cancer - the latter unlikely based on the doctors prognosis but until the tests still a possibility.  You dissect every word - "it LOOKS treatable".  That doesn’t mean it is, that’s just his best guess on what he had seen.  I felt on the world's biggest rollercoaster and would swing from periods of feeling strong and positive to thinking the worst at the drop of a hat.   

Things that helped over these two weeks were:

1. Julie - my wife who was an absolute rock.  When I felt low she picked me up - was she feeling as positive as she portrayed, probably not.  But she did an amazing job supporting me and picking me up.  I made sure that she in turn was speaking to people.
2. Friends - ironically (given my Mum hiding her diagnosis) our parents brought us up with the view that a problem shared is a problem halved and I've always been a talker, in fact I probably wear my heart on my sleeve too much at times.  Therefore we told friends fairly early on, I always highlighted that this was in no way for sympathy but I need people around me and wanted to build a support network for Julie as much as me
3. Bella our Cockapoo - most days I'd walk Freya to school, then take Bella into the woods for a good hours walk to clear my head.  She was amazing and when I felt low often picked up on this and came for cuddle
4. Positive stories of Cancer - I spoke with some really great friends who had been through this journey (you know who you are!!!) and you literally hang on to every word they say.  You feel a bond with them of shared hardship
5. Random strangers - I met a lovely lady on a dog walk who we got chatting but when we started talking about my children I started to cry.  I explained why and she told me a story of a friend of hers who had bowel C, had an op 11 years ago and was fine since.  Her Mum has also had C for 31 years and is battling on - she said her positive attitude made all the difference.  After meeting her for a second time we exchanged numbers and she's messaged me a few times since to check on me.

Things that didn't help:

-People saying "Be positive" - whoever you told said the same thing.  To be fair if I was them I would have said the same, but whilst I was in the limbo of not knowing what it was or how extensive it was it was hard to be positive.  I tried, believe me, but everyone fears the unknown!

-Google - I just couldn’t help myself! I'd sit down with a coffee and start googling….BIG MISTAKE!!!  This often knocked me for six and I found stuff I really wished I could unsee!

On the following Wednesday I went for my CT scan and MRI at Clare Park again.  The worst part was the canula (needles!!!!) - which didn’t entirely go to plan as it started leaking.  The poor nurse was calling her colleague to help in an 'urgent, don't panic' tone which didn’t help me to relax!  In terms of the MRI it was fine, I asked for an eye mask which they provided and also I got some headphones to listen to some music.  I plumped for some Classic FM which I often listen to to work or relax, although when they turned it on the first voice was Bill Turnbull introducing himself.  I recalled an interview I had seen Bill give in which he spoke about when he was diagnosed with incurable prostate cancer and finding out during a colonoscopy rather than with a doctor in a consulting room as you might imagine - I smiled at my unfortunate choice of audio.  The MRI took about 35-40 minutes - the female nurse kept speaking into my headphones to tell me exactly what was happening with the most relaxing, comforting voice imaginable. 

Following that I went to the waiting room with Julie ahead of the CT scan and I had to drink a few cups of water.  The CT scan was in a mobile scanner in the carpark and soon I was called, they had left the canular in to save having to do it twice.  I walked up the steps of the scanner which looked like the ones that you see in supermarket car parks - it was fairly big.  The procedure here was for me to lie on the bed that then moved through a big doughnut shaped scanner twice, then they inject some dye into the canular via what looks like an old telephone cable and then they repeat the set of scans - my understanding of this is to show with contrast in your blood and without.  They warn that when the dye goes in you may get a sensation of wanting to go for a wee - however my experience was rather different in that a) I felt like I was going to be sick b) my nuts felt like someone had lit a match under them!!!    The overall scans only took about ten mins and then the canular was removed.  Afterwards we went for a lovely coffee and lunch at a nice coffee shop in Farnham.

During this period time just seemed to go out the window - each day seemed more like a month as they say it does in the Love Island Villa.  Two weeks felt like months!  Despite this I was sleeping very well (>7 hours a night, probably because of the stress was draining me during the day).  The worst part for me was waking up - I'd wake up, remember the diagnosis and just want to go back to sleep and wake up with it having been a terrible nightmare. 

On the Friday of the second week we went to a pool party in Guildford Lido organised by Julies work and I just wanted time to stand still, the kids were so happy jumping in and out of the pool, shooting down the waterslides together and playing various games and activities set up by her company.  I just wanted to stop the clock in that moment and bottle it up - happy times and kids being kids with no stresses.

Originally I had been asked to have the MRI / CT scans on Weds and book in for the results on Friday, however in the meantime I had been asked to go for an Ultrasound on the following Tuesday.  Given we had Toby's / Freya's sports day on Friday which I really didn’t want to miss I didn’t chase an appointment especially given the Ultrasound would add detail to any prognosis.  I saw the fact that I hadn't been rushed in as a positive that it wasn't the worst kind of news.  However I got a voicemail at 4.30 from the new doctors PA (she had left it at 1pm but it hadn't come through), I called back but they had left for the weekend which unsettled me slightly.  Despite this we had a lovely sports day and weekend.

The following Tuesday I had my Ultrasound appointment in Frimley early on.  Again Julie came with me for this, the room was pretty much the same room used for baby scans.  I had to drop my trousers & underwear and again get onto a bed into the foetal position whilst Julie held my hand.  For this the operator pushed the ultrasound up my bum and pressed it onto the growth - he explained that this is one of the best bits of kit available in the UK and enabled them to see all of the layers to give a far more detailed image.  It was more uncomfortable than the colonoscopy, especially when he wiggled it around into different positions, but he said he got some really good images.  

I asked him not to share any results with us as we were seeing the doctor the following day and I wanted to get everything together.  Also I was conscious that Julie was heading straight off to work and I didn’t want her to have to miss the day.  I recall him smiling at me, shaking my hand and him saying 'All the best'.  Again you dissect everything - was that good? If I had Cancer might he have said 'Good luck' or something?  Funny how you over analyse everything lol

So that was it - all the required tests had been completed for my prognosis.  Funnily enough as the days had passed I had become more positive about my prognosis and was even nudging my mind towards it being benign.  At that stage I felt I would obviously have taken that or  maybe bowel cancer with a straightforward operation to remove and no chemo / radiotherapy as seemed to be what happened to the 6/6 bowel cancer patients I had heard from or about. 

13 days after my colonoscopy I was prepared for whatever the results were.  That changed on the morning of going to get the results as I was a mess - I can't recall what I did to take my mind off it but I think I walked Bella for a good 90 minutes in the woods and did some electrical work in the kitchen!  Finally it got to 1.20 and I set off for the hospital not knowing what the next hour would bring.  I met Julie in the carpark and we silently made our way up to the private outpatients suite not knowing if I would be given my 'Use By' date and it was frankly terrifying.