29th July - Clinic and raised Tumour Markers. Another Chemo cycle needed

I woke up feeling much better and ready to head into hospital for the last of my Bleomycin top-ups which would conclude my first cycle of my treatment.

We arrived at the hospital early in time to have the dressing changed on my PICC line and my bloods taken before my 9.30am appointment.  This time I'd asked to see Professor Joffe who had returned from holiday and I'd heard good reports about him.

We headed in for the appointment and Danny (the nurse I'd dealt with in the past) also sat in.  I was asked how I'd been getting on before, unfortunately, I was informed that one of the tumour markers (a protein indicator) from last week's blood sample had spiked significantly.  Typically the reading should be 5-6, the chemo could have led to an increase to around 8-9, but mine had spiked to 15!  This is a firm indicator of a likelihood that some cancerous cells are still present and as a result, I was informed that I'd now need to receive three cycles of chemo rather than the two I was currently in the middle of receiving.

Obviously this was not good news and took me completely by surprise.  By this point I was in the mindset that I was all but through my first cycle of chemo and only had three more weeks to go.  Now, I was being told that I was, in effect, back at square one again and would need to face up to another six weeks of treatment.  Looking at the bigger picture, however, I was told that these increased markers were not uncommon and that the third cycle was needed as a belt and braces approach to ensure that any cancerous cells were hit hard now, rather than the risk of recurrence later.  In summary, my long term prognosis would not be affected by the change in my situation.  In addition, having all but finished one cycle of chemo it was somewhat easier to digest the news that I'd need a further cycle knowing that I now only needed to face two rather than three had I have received the news before my treatment started.

Having finished my appointment with Prof Joffe, who was very helpful and informative, we waited for my drugs to be prepared (which can only be done once I've been given the green light at the clinic) and I then received a half hour Bleomycin infusion.  I said my farewells to Will who was receiving his last Chemo treatment today and we'd spoken a lot of the past couple of weeks.  We left the hospital around 1.30pm and I was felling fine. 

25th-28th July - Rest Days

Having felt quite good for a couple of days, unfortunately on the Monday I started to suffer some pretty bad flu like symptoms.  I likely picked this up from either Jacki or Lyla who had also been under the weather for a couple of days.  

It's a tough situation knowing people around you aren't 100% well and that your immune system is low, but unless you completely isolate yourself there's only so much you can realistically do to protect yourself.  Whilst we've been extremely careful in cleaning surfaces and washing hands many many times there's little that could have been done to protect against picking something up through airborne particles.  Besides, given the choice of either being isolated from Lyla or accepting the risk of infection whilst being able to have close contact and cuddles with her, it's not even a decision to think about.

Thankfully by the Tuesday I was feeling a lot better and was ready for my latest Bleomycin top up on the Wednesday. 

24th July - Hair today, gone tomorrow

One of the all but certain side effects I know I'll have to encounter is a complete loss of the hair on my head.  I've read a lot around this and found that it's likely to happen around two to three weeks after I started treatment, so I've probably got around two weeks (best case) before it starts falling out.

To help try and make losing my hair slightly more bearable, I've decided to shave my head first so I feel like I'm in control of what's going on.  Whilst my hair will still fall out, at least I won't need to worry about big clumps disappearing and I'll already be used to seeing the shape of my head so it won't come as such a big surprise.

So here's my new look.....

I must say I was quite impressed with the results!  I think part of me had always wanted to know what I'd look like with a buzz cut (yes, that's what it's called!) but I'd never had the bottle to follow through with it.  At least I know that when my hair slowly starts to grow back (hopefully 6 or so weeks after I finish chemo), that I'll be happy to keep it very short if it does start to grow back in a weird way - which often happens apparently.

Some people's hair grows back thicker or thinner, a different colour, or even curly when they've previously had straight hair.  It sounds like it could be a bit of a lottery.

22nd July – Cycle 1, first Bleomycin top up

For some reason I awoke feeling really tired and nauseous – definitely the worst I’d felt since the weekend and the anti-nausea tablets and paracetamol didn’t seem to help at all.  However, there was no time for moping around as we had to be at the hospital for 9am.  I first went to have the dressing changed on my PICC line by a nurse before having my bloods taken.  At this point I was feeling really unwell and had to stop the nurse a few times as I felt feint whilst I was sat in the chair.  Thankfully I got through this and proceeded to wait for my appointment with the consultant Oncologist.

After a thankfully short wait (by this time I was becoming accustomed to waiting times in terms of hours rather than minutes) I went in to see Dr Stark who asked how I was getting on.  I said I’d struggled over the weekend and basically like I’d had the hangover from hell.  Obviously he was used to this kind of update and said that unfortunately it’s just part of the side effects.

He asked if I’d had any other notable side effects, particularly bleedings or fevers and thankfully I’d had neither of these.  He then examined my chest using a stethoscope to make sure my lungs were fit and ready for my first Bleomycin top up.  Whilst Bleomycin is one of the key parts of my chemo regime, it does come with some pretty significant risks regarding short and long-term effects on my lungs, but these are all relative compared to the reasons why I’m having this treatment in the first place.

I then headed to the ambulatory care unit ready for my top-up.  Unfortunately I had to wait an hour and a half until a place become available.  I can accept this type of delay as the nurses have to do an amazing juggling act dealing with all the patients who are dropping in and out during the day to receive different treatments with no definite way of knowing when they’ll turn up (as there’s a lag after patient’s clinical appointments).  What does frustrate me though is having to wait for appointments with the doctor, particularly when my 9.30am appointment (the first of the day) was already late by over half an hour, which of course then has a knock-on impact on all the other patient’s subsequent appointment times.  I don’t mean to come across as whining in my complaining, but surely the department could come up with a more efficient way of managing appointment times?

Once a seat became available I was hooked up to flush my PICC line before having the Bleomycin.  Thankfully this was only a 30 minute top up so we didn't have long to wait.  The waiting also gave me the opportunity to speak to the chap next to me who was receiving chemo for non-Hodgkin's Lymphoma.  I really felt for this guy, he'd been in remission for a couple of years, but had unfortunately relapsed.  He was in the process of starting a much longer course of chemo than I'm having, and if that weren't bad enough, after that he needs to go through some pretty brutal stem cell surgery and a long period in hospital.  

Listening to his story and how matter of fact and up-beat he was really made me stop and think.  If ever I needed a reality check and a reminder of just how lucky I am, this was definitely it.  For all the positive energy and upbeat thinking I've been trying to apply to treating my condition there have been many times when I've also drifted to thoughts of "why me?  What have I done to deserve this?"  However, having listened to this guy's story I made a vow to myself to never think like that again and to appreciate how lucky I am to have a positive prognosis and to have so much love and support from family and friends.  

18th-21st July - Rest Days

The Friday and Saturday (the two days immediately after my treatment) were tough.  I felt ill, didn’t want to eat, didn’t want to speak to anyone, in fact I had no energy to do anything really – not even enough to focus on resting the iPad in bed in order to watch some TV!  Still, I was expecting this but I think it was more the way it crept up on me that caught me out.  I thought it would be a big bang type hit, whereas this blighter had snuck up on me and caught me unawares just as I thought I was doing ok.

Bizarrely, on the Sunday evening I felt an ever so slight upturn in energy and managed to eat a plain jacket potato with some grated cheese.  Whilst it felt like I was trying to battle through the equivalent of eating ten potatoes, it did feel good to get some food down which in turn helped with my energy levels.

By this time I’d also really started to notice that my usual tastes and smells were all out of sync.  Certain smells which used to be quite appealing suddenly really seemed to make me feel sick – mint or citrus type smells were an example of this and I found that it wasn’t nice trying to brush my teeth with mint toothpaste.  Similarly, certain foods which I’d been loving only two days before all of a sudden even the thought of them made me feel nauseous.  Ready made microwave pasta dishes (and nice ones at that) were now consigned to the rubbish.  Instead I found myself craving only a few very limited food types, specifically bread, cheese and hard boiled eggs.  I’m sure there’s some logical biological explanation for these cravings (probably that my body was simply craving carbs, fat and protein) but I’ll just keep it simple by saying that I decided that whilst I felt ill, I was going to eat whatever I wanted to, regardless of how unhealthy it may otherwise be considered.

By the end of the Tuesday I was feeling quite a lot better, still weak and lethargic, but by comparison a lot better than I’d been a couple of days before.

16th-17th July - Cycle One, Treatment Days 2 & 3

I was surprised how easily the first few days went.  Aside from a bit of tiredness on the third morning I couldn’t really tell that I was being pumped full of toxic chemicals and felt pretty normal.  Everything was great at the hospital.  I’d settled in to becoming one of the regulars and it was good chatting to other people on the ward, many of whom were having tougher battles than I was.

I was really happy when I was able to leave hospital at lunchtime on the Friday as my first round of treatment was done!  However, this relief was soon short lived.  Jacki and I stopped at McDonald's on the way home for a well deserved full fat treat and it was around then that the effects started hitting me.  I just couldn’t stomach my food and started to feel really wishy-washy.  We got home and I spent the rest of the day on the sofa feeling sorry for myself before going to bed very early.

As well as an immense feeling of tiredness and being extremely lethargic, I also developed a really annoying case of hiccups.  I just couldn't seem to get rid of them for a period of around twelve hours, although thankfully (at the nurse's suggestion) a couple of Biscopan IBS tables seemed to help a little.

Thankfully I was no longer attached to my back-pack of fluids so I had a little more freedom in being able to move around, not that I felt like doing much moving.  Looking back it was such a strange way in which the effects started hitting me, it was like something creeping up on you from behind and then all of a sudden, bang!  I also kept waking up through the night feeling uncomfortable and feeling nauseous, although thankfully once I took the anti-nausea tablets they helped to calm things down.

From the Friday afternoon into Saturday I must have slept for around 17 hours which shows just how much my body was craving some rest.

15th July - Cycle 1, Day 1 Chemo

And so it begins!

I arrived with Jacki in the ambulatory care day ward just before 9am with one elderly chap already hooked-up on his treatment. I only had to wait for a few minutes before I was connected to flush the PICC line before being connected to other pre-chemo drugs such as an anti-nausea infusion. 

After a little over two hours I was connected to my first bag of chemo drugs (Etoposide, the 'E' part of BEP).  This was very uneventful, I'm not sure what I was expecting, but whatever it may have been it didn't happen.  It was nice being able to sit in a comfortable reclining chair as I was going to be spending many hours in these chairs over the next few weeks.

Wired up to a bag of chemo.......

I also had a quick chat with a couple of other guys who had arrived in the ward who were also having the same BEP treatment. Will was starting his third and final cycle and seemed to have coped pretty well through the previous two. The other chap, Jonathan, was on for his first cycle one bleomycin top-up so was literally one week ahead of me in terms of treatment. He'd already said that he'd gone off coffee and was struggling with fatigue, but other than that he seemed to be doing pretty well. The main noticeable difference between the two was that Jonathan still had a full head of hair whereas Will's was all gone. It will be interesting to see if I bump into Jonathan next week to see how his hair's going as it'll be day 15 for him and I've read that day 16 is d-day with regards to hair loss.

The first infusion of Etoposide was fine. I didn't feel any adverse effects and I ate my lunch with no problem at all (a nice healthy super salad Jacki kindly got me from the on site M&S). 

A bag of chemo drugs covered in a brown bag (due to sensitivity to light)......

I then had further infusions in the afternoon and again didn't feel any particular side effects, other than needing to visit the loo to pass a lot of fluid as I was constantly being dripped with solution to protect my kidneys from the adverse effects of chemo.  It's also important to pass the toxins from the drugs quickly as possible to prevent any damage to kidneys.

I was also connected up to the saline solution in the afternoon so was actually infusing two types of fluids as I was also connected to the Cisplatin chemo (the 'P' in BEP). The saline is already packed in my back-pack complete with the pump ready to take home tonight.  Will already gave me a heads-up that this pack may drive me mad during the night as it beeps to inform of any kinks in the tubing which causing a blockage in the flow of the solution. Without the beeping the noise it makes whilst dispersing the fluid reminds me of the noise the motor makes on a car's windscreen wipers so hopefully this won't be too distracting during the night.

Thankfully time didn't pass as slowly as I though it would and it certainly helped chatting with the other patients on the ward. Well, I say a ward but it's more of a clinical lounge. I even helped with manning the phones whilst the two nurses went on their lunch (well I did tell them that I'd hold the fort so what was I supposed to do!?).  This seemed to provide a bit of light hearted entertainment to people as I walked over to answer the phone whilst transporting my mobile pump stand and drip.  I'd even politely requested whether I could watch The Open golf on the TV tomorrow so it looks like this could be a goer! I would have happily watched it online through my iPad but unfortunately this ward isn't wifi enabled, and even if it was I doubt it would be fast enough to support live streaming.

By around 4pm I did start to feel a little nauseous and by the time I got home at 6pm I was starting to feel really tired. I did manage to eat my dinner without any problems, my appetite certainly wasn't affected. I hit the hay at 9 o'clock and woke up a couple of times during the night needing the loo. I need to measure all my fluid outputs to make sure my kidneys are working properly to flush out the toxic chemo drugs.

14th July - PICC Fitting

Today I was fitted with my PICC (peripherely inserted central catheter) line which will act as the tap for administering all the chemo and for taking blood samples over the next six weeks. This little tap (well, there are two taps actually) will poke out of the bicep on my right arm like little bag pipes for the next six weeks and whilst this will be a slight burden with regard to practicality (showering etc) it will be a huge benefit over the course of treatment as it will mean I won't need to be constantly attacked by needles in order to insert the drugs or to take blood samples which I'll need to have done many times.  

An infusion tube connected to my PICC line.....

The procedure was fairly straight forward in that I laid down whilst being given a local anaesthetic in my right arm before having the line inserted half way up my bicep where they could find a good vein. From the insertion point the tube is fed further up my arm and round a bend to point it down towards the heart.  Having the tube inserted felt slightly odd as I could feel the sensation of having a foreign body being pushed up my arm which was a bit disconcerting. I was also told at one point that I had to turn my head to the right and rest my head on my chest which would enable the nurse to route the PICC line down the correct vein at a junction rather than it taking a wrong route and going up my neck. 

After the PICC was fitted I went for a chest X-ray to make sure the line was correctly aligned in the correct position. I've no idea what happened at this point, but I came pretty close to fainting and had to be wheeled back in a wheelchair after the X-ray. I don't think this was in any way due to the PICC being fitted, I think I must have just suffered a bit of a turn. 

The X-ray confirmed that the PICC line was correctly fitted in the correct vein so the output tap was bandaged up ready to go for the following day. I rewarded myself for being a brave boy by having a MacDonald's on the way home.

10th & 13th July - Sperm Banking

Well, without getting into too much graphic detail the two visits I made to the sperm bank were pretty non eventful. There was a lot of paperwork to go through on my first visit to ensure I was giving my consent to all the storage questions and potential what ifs for different scenarios. 

I was then ushered into a private room in order to do the do where I had access to a cupboard labeled 'Men's Literature', and no, this didn't contain football or rugby magazines. Fortunately the procedure went pretty smoothly. Whilst I was in unfamiliar surroundings, I was at least able to call on years of experience in order to overcome any potential stage fright, although the destination target area (i.e. the cup) was pretty small.

All being well all this hassle will be a wasted exercise as my swimmers should return to normal a few months after my treatment's finished, but it's better to be prepared.

I had to make two visits to the hospital in order to make two deposits, one on the Friday and one on the following Monday. I was informed this resulted in ten different virals of my swimmers being stored in case they were ever needed. The storage will be funded by the NHS for at least five years, and should I wish to keep my Chateau Burrow vintage in storage for up to a further 55 years, it would cost me a little over £250 per year. At this point I had only consented for my sperm to be stored and not what it could be used for. Jacki and I will need to go through further consultations in order to confirm these decisions.  Yet more hospital appointments!

8th July - Final Diagnosis

So today’s the day I find out the full diagnosis and and what the next steps are regarding treatment.  After a very long wait (approaching two hours after my appointment time) in the waiting room where I was getting more and more anxious, I thankfully received the news that the CT Scan showed the cancer had not progressed beyond stage 1.  This was the first slight piece of good news I'd received since my journey had started.  I can't tell you how relieved I was!!

However, as I already knew the variant of cancer (EC) coupled with the signs of ‘vascular invasion’, this means that whilst the cancer may now be entirely gone, my chances of it not returning with the next two to five years are only 50/50.  Therefore, the strongly suggested treatment is for adjuvant (upfront preventative) chemotherapy. 

At this point this was good news for me in that I will only need two cycles – best case scenario I had prepared myself for given my pathological report that I’d received.  On top of this, I’ll be able to start in only a week’s time so I don’t have to wait even longer with any worrying drawn out.  Sure, it would have felt amazing to walk out of the hospital that day knowing that I was choosing not to have chemo, but to then have a constant 50/50 cloud hanging over me for many years to come would have been mental torture.  In that sense it's much better to suck it up now and have the chemo with a view to reducing future risks of recurrence down towards the low single digits.

The consultant also reassured me that provided I’m up to it, I can have the chemo administered as an outpatient with hopefully no need to stay in overnight – which I was very happy about.  He also made it critically clear how important it is to flag any changes in temperature, fevers or even minor bleeding as what would usually be classed as minor ailments can become life threatening due to my immune system being shot.  I was however more positive in that he said I could interact with Lyla and didn’t have to be so worried about coughs and sneezes, rather it is more viral problems I need to be aware of.

The CT scan also happened to show that I have an issue with my thyroid which is something I’ll need to get checked out once this whole cancer episode (finger crossed) is behind me.  Almost like a 'buy one, get one free' diagnosis - what is going on with my body!?

I had a follow up with a really nice nurse called Danny who I got on with far better than the nurse the previous week.  Danny talked me through the next steps and what was going to happen over the next week before my treatment started.  He confirmed I was booked in to start chemo on 15^th July (a week from today) and beforehand I need to pay two visits to the sperm bank as the chemo in a small number of cases can mean that my swimmers wouldn’t be able to reach the intended base on a long-term basis. 

I was also booked in for the Tuesday morning (day before treatment starts) to have my PICC line fitted.  This is a tube like device which will be inserted in my arm which I’ll explain later.

All in all I was relieved with the news I received today and it came as a relief to my parents too when I told them later as I'd prepared them that it could be a long treatment road ahead.

1st July-8th July - Understanding Chemotherapy & Chemo worries

I’d already done some reading about the chemotherapy typically involved in treating testicular cancer.  Before I started this reading I’ll admit I was very naive in my understanding of what chemotherapy was.  This was likely a result of me being very lucky in that I’ve never known someone close who’s needed to go through chemo.  However, even if I had previously come across someone who'd been through chemo, I wouldn't have appreciated just how many different types of treatment there are and how different they can be in terms of their administration and side effects.  Consequently, whilst I knew chemo wasn’t a pleasant experience by any means, I probably didn’t appreciate how severe - particularly the type used for testicular cancer – the treatment can be.

The chemo typically used to treat testicular cancer is a combination of three potent chemicals whose names are abbreviated to BEP (Bleomycin, Etoposide and cisplatin [platinum]).  Whilst the treatment is extremely effective in tackling testicular cancer, it can be a brutal beast.  I found this link provided a really useful explanation to how the individual drugs work; http://www.lisamckaywriting.com/chemotherapy-for-dummies-what-does-bep-do/

A single cycle of BEP chemo is given over 21 days with various combinations of the drugs being administered separately on different days with rest days scheduled in between.  Some days you can be wired up to the intravenous drugs on and off for up to 8 hours (yes, 8 hours) as the toxic chemicals flush their way through your body in order to target the cancerous cells.  

I don’t mean that last sentence to sound flippant, but that is basically what chemotherapy is.  It’s toxic drugs designed to kill cancerous cells.  Unfortunately, however, the drugs can't differentiate between the 'good' and 'bad' cells its targeting, and hence the negative side effects where the drugs impact rapidly producing 'good' cells in the body (white blood cells/immune system, hair cells etc).

Typical side effects can include nausea and sickness, extreme lethargy, weight loss, very limited immune system, hair loss, loss of appetite, a metallic taste in the mouth.  Basically it can be like having ongoing flu (proper flu that is, not just man flu!) coupled with the ongoing challenge of needing to continually visit hospital on and off.  I’d read a number of blogs from patients who’d been through BEP chemo and based on some of their first hand experiences I already started to feel queasy at the prospect of some of the things they’d been through.

Based on the diagnosis information I had to date I began preparing myself for a best case scenario of 2 cycles of chemo (over 42 days!) provided it was contained as Stage 1.  I was really keeping everything crossed that it had not spread further as this would likely lead to 3 or 4 cycles or chemo – potentially up to a time frame of 84 days of treatment and side effects.  I just did not want to contemplate this scenario at this stage, but I needed to be aware of it.

During this period I began to make enquiries about whether I could receive chemo privately (I was lucky to have private health cover).  Lots of private hospitals advertised the option of having chemo administered privately, or even from your own how.  “Fantastic” I thought, that would really put my mind at rest to know I was in comfortable surroundings or at home (note: I don’t mean to sound like a spoilt brat at this point, but I thought if ever there was a time to make use of my private health cover, than this was it). 

However, following many phone calls to make enquiries, to cut a long story short I was repetidly told that the BEP chemo is so potent and intensive in the way its administered and with its risk of adverse side effects it could only be given by specialist NHS units.  In that sense, I can count myself extremely lucky to live within half an hour’s drive of a world renowned Testicular Cancer centre at St James’s.  I’d read some chemo blogs where patients have had logistical problems just getting to the hospital in order to receive treatment.  Fortunately that’s one less thing I need to worry about.

1st July - CT Scan and follow-up appointment

I headed with Jacki to St James’s for my CT scan.  The results of this will determine what stage the cancer is at.  Stage 1 would mean it was contained to the testicle, anything else would mean it had spread to some varying degree, e.g. Stage 2 would mean it had spread to my abdomen and so on.

I followed the CT scan and subsequent blood tests with my initial meeting with the St James’s specialist nurse and junior Oncology consultant.  I explained everything I knew regarding my diagnosis to date and become increasingly frustrated by the nurse’s reluctance to discuss any potential next steps.  To be honest, I simply did not like the manner in which she addressed me and Jacki, nor the junior doctor either who she frequently spoke over.  He was much softer spoken and I could tell he was trying to be more open and honest with me, but the nurse kept interrupting him.  Highly unprofessional I thought. 

Her attitude to me felt very patronising and didn’t display much of a caring manner at all.  For example, when I mentioned that I knew I had 95% Embryonal Carcinoma she blunty said “you don’t need to worry about that, you just need to know it’s a non-Seminoma type”.  Of course I need to worry that it’s 95% EC!  I had done enough reading to understand there are various types of non-Seminoma type diagnosis, it’s not simply a broad brush ‘one size fits all’ approach to the treatment.  I knew it was aggressive and spread quickly, so I wanted to understand the potential consequences better, including the likelihood of chemotherapy, even though I was reassured that EC is very receptive to chemo – which is obviously a good thing!

On top of this I was given a further breakdown of the pathology report which showed there were signs of ‘vascular invasion’, which in simple terms means the cancer had started to try and escape from the testicle – another key sign I knew from my research which pointed more to the likelihood of needing upfront chemo.

I left St James’s feeling angry and frustrated that I had not been able to engage in a more constructive conversation to understand the likely next steps, even if the full picture wasn’t known at this stage due to waiting on the CT scan results.  It was only when Jacki and I pushed to say that we needed to consider future plans; how soon would chemo likely start?  How many cycles may be needed?  Mentioning that we’d need to ensure childcare for Lyla was in place, I needed to give work a more informative update – logistical issues like this that the nurse didn’t seem to appreciate until we explicitly outlined them.

I did leave hospital that day with an appointment for a further follow-up the next Wednesday by which time I knew the various consultants would have reviewed my case in order to determine the suggested treatment.  I was already preparing myself mentally for chemo, I just hoped the number of cycles would be limited (more about that in a bit).

So, another week will go by without knowing what the full diagnosis is, although I understood I was edging ever more towards needing chemo.

24th June - Initial Pathology Report

I knew my case and any further follow-ups would now be based at St James’s hospital in Leeds where the specialist cancer centre is based.  Having received an expected follow-up letter to attend a CT scan on 1^st July (nearly two weeks post-op), I rang one of the Macmillon nurses at Harrogate to check why I had not received an appointment letter with the consultant at Leeds (it turned out the letter for this appointment arrived the next day).

During this conversation I explained that I was doing as much research as I could online into the potential next steps as this is the way I chose to deal with things.  As a result of this the nurse said that they had the preliminary pathology results back from my ‘sample’ and did I want to know them.  Well, of course I couldn’t really say no at this point, even if I had really wanted to wait to hear any news.

The nurse proceeded to tell me that the tumour was indeed cancerous and it was of a non-Seminoma type comprised of 95% Embryonal Carcinoma (I’ll refer to it as EC from now).  Ok, so what on earth does that mean!?

I quickly started Googling ‘Embryonal Carcinoma’ and it didn’t take long to learn from medical research papers (I was careful to only read quality information) that this was not the variant of cancer you would wish to pick if you were playing a perverse game of lucky dip.  I started reading terms like ‘aggressive’ and ‘likely to spread before lump is even noticeable’.  Oh no, this does not sound good.  I was further confused by reading that this variant may not register on blood tumour markers.  Until this point I’d been reassured from my blood tests that the tumour markers (measures in the blood that can show signs of the stage of the cancer) were all in the ‘normal’ range.  But does that count for nothing now given the variant I’d been diagnosed with?

I did more and more online research around the variant, I just couldn’t help myself, it’s the way I’m programmed.  I tried to be as objective as I could in the information I was reading and I certainly wasn’t looking at any diagnoseyourself.com type websites which could give false information.  I was reading technical medical research papers and first hand blog experiences by people who had been diagnosed with the same variant.  I felt this was the only way I could help to reconcile things in my own mind, even if a lot of the information didn’t fill me with positive thoughts on what my happen next in terms of treatment, i.e. chemotherapy.

I realised from all the reading I’d done that an ongoing surveillance programme (without treatment) was likely becoming less of an option.  Due to the aggressive nature of the variant, even if the consultants believe the cancer has been contained at stage 1, there’s a much higher chance of it returning.  Consequently I’d read that the likely advisable course of action would be some chemotherapy, regardless of what stage the cancer was at.

20th-23rd June - The high after the operation

The recovery continued to go well.  I was soon able to stop taking the ultra-strong co-codamol tablets I’d been described, but I did need to keep topped up on paracetamol and ibuprofen to suppress the pain.  It’s only when I inadvertently used the damaged muscle group through sneezing, coughing or making a misjudged turn did I really experience real pain.

Over the next few days I was on a bit of a mental high.  I’d had the procedure to limit any further damage or chance of spreading.  There was a chance that I still didn’t have cancer, and even if the pathology reports showed that the tissue was cancerous, there was a good chance that having the procedure may have been the only action that was required.  Unfortunately though, this high didn’t last for long.

19th June - The Orchidectomy operation

The Friday came round quickly and I checked-in at 7.30 am at the hospital and thankfully I was first-up on the day’s schedule for the surgeon.  After a relatively short wait – by which point I was in my sexy hospital gown - and some further checks and tests I was literally drawn up in marker pen with a big arrow on my upper left leg to ensure the surgeon removed the villain from the correct side.  I was then walked through to the surgery prep area and laid down on a bed.  Within 5 minutes I’d been wired up and was out for the count under general anaesthetic.

I awoke in the recovery area feeling pretty sore so I was prepped up with some morphine before being wheeled into the ward to get over the anaesthetic and have something to eat.  After a few hours I was ready to go home.  I was able to walk gingerly, but as the procedure was carried out from my lower abdomen downwards I was left with a 4 inch wound which had been stitched up.  This would take a number of weeks to heal and I wouldn't be able to do any lifting whilst the muscles and tissue recovered.

16th June - Sharing the diagnosis

Following all the checks and tests I drove home on my own feeling numb.  In the space of a few hours I’d gone from being informed that my condition was probably nothing to worry about to being told that in all likelihood I had cancer.  How is someone supposed to make sense of that?

Driving home I started to realise that I’d need to tell some people, particularly my family and work.  Obviously I was in no state to return to work that day.

By the time I got home I thought I’d accepted the news and was dealing with it.  How wrong I was.  I rang work to speak to my colleague to inform him I wouldn’t be returning.  Whilst trying to explain what had gone on in the morning I broke down into tears, I just couldn’t hold it together.

On top of this I knew I had to inform my parents which I was dreading.  Jacki rang them to make sure they'd be in before we drove around and sat them down.  Thankfully Jacki was very collected and explained the situation in the best way possible given the circumstances.  I was surprised how well they seemed to take the news.  They were obviously upset and worried, but I suspect my mum in particular only thought there was a ‘chance’ I may have cancer, whereas Jacki and I realised there was in fact a high-probability.

I spent the rest of Tuesday and the next two days trying to come to terms with what was going on and to prepare myself for the procedure.  Whilst in the grand scheme of things the procedure was only a relatively small operation, I still found it hard to come to terms with the fact that a small part of my body was going to be removed.  But by the same token I knew I had an 'enemy' in my body and I wanted that thing out as quickly as possible before it could do any further damage.

16th June - The Hospital and initial diagnosis

I was very impressed with the short time-scale for the referral which meant I was able to go to the hospital less than a week after visiting the doctor.

The consultant checked me out (which felt like repeatedly getting a football landed in your nether regions) and said it looked like there was nothing to worry about and was likely just a swelling from one of the ‘pipes’ down there.  To be sure though, he sent me off for an Ultrasound with a view to closing the file on the same day and avoid the need for me to return (that’s what he told me anyway!). 

The ultrasound was pretty uneventful, although I was ever so slightly concerned by the way in which the scanner (I can’t remember the correct medical term) seemed to take quite a long time and the way in which he said to await the results once he'd discussed the scan with the radiologist.

Following the ultrasound I headed back to see the specialist so he could confirm the good news and tell me that the swelling would subside or whatever the happy outcome was going to be.  I was called in by his assistant to wait in the side room that adjoins the consultant’s office as he was just getting the results through from the scan. 

So, picture the scene.  I’m sat in a small examination room with the door closed to what I assume is a bigger back office.  After a minute or so I realise that I can hear the consultant next door talking on the phone which is intermingled with other nurses who are also back there having a chat, joking and asking who wants a cuppa.  At first I didn’t pay much attention other than to think “jeez, you can hear everything that’s going on back there!”  However, my ears soon started picking up as I began to hear the consultant mentioning certain words, one of which was tumour.  All of a sudden my calm manner vanished and my worry levels rocketed.  “Oh my god, he’s talking about me!”

After a further few minutes of waiting (which seemed like an eternity) by which point I’m really starting to feel worried, the consultant opens the door from the back office and the first thing to come out of his mouth is “is there anyone here with you”?  I literally felt like I’d been hit by a bus.

Obviously at this point I realise it’s not the all clear I was expecting and it clearly was my results he was discussing after all.  I instinctively informed the consultant that whilst I’m here on my own and whilst I realise it’s not good news, can he not just tell me there and then?  However, he strongly advised that it would be better if someone was with me.  

Everything was becoming a blur at this point, but I do vaguely recall asking him why on earth he would give me the impression that everything seemed to be ok before I went for the scan.  He responded by saying he did have some concerns, which further angered me.  Surely it’s better to inform the patient by saying “hmm, this could be something – it’s probably not – but I’d best send you for a scan.”  I also mentioned to him that I’d been able to hear most of his phone conversation through the door.  Not a good experience. 

  

Anyway, in a blur I headed outside the hospital to ring my wife Jacki which was awful.  “Hi, it’s not good news, but I don’t know what it is so can you come to the hospital.” Needless to say my head’s in bits at this point as I end up sitting in my car waiting for Jacki to turn up.

Jacki arrived and we walk back in to wait and this time the consultant appeared with two nurses, both of whom are wearing bright yellow Macmillon Cancer Carer badges.  Again, what a fantastic way of subtly sharing the impending news!

I was told that I do indeed have a tumour on my left testicle which is ‘highly suggestive’ of it being cancerous.  This was followed-up by informing me that I had already been booked in that Friday (three days time) for an Orchidectomy (the medical term for removing a testicle). 

Thankfully though, through my research I’d learned that this procedure isn’t as bad as it may initially sound.  I realised I wouldn’t become infertile and that everything would continue to function as it should down there.  I even knew I could have a prosthetic fitted from an aesthetic perspective.  On top of this I was told it was a day patient procedure so I wouldn’t have to stay in hospital overnight.  So all things considered that’s not too bad.  However, in the space of only a couple of hours I had gone from a state of mind believing everything was ok, to being told I probably had cancer. 

I had some further chats with the Macmillion nurses who were so kind and supportive in providing information and answering my questions.  Following this I was off to have various x-rays, blood tests and general medical checks to record my current state and ensure I was ready for surgery in three days time.

5th-10th June - Discovering a Lump

It was 5^th June when I somewhat accidentally discovered a slight lump on my left testicle and thought it best to get checked out at the Doctors. 

I wasn’t particularly concerned as I did some research on the Internet and was reassured that the vast majority of lumps were nothing to worry about.  In addition to this, I was also reassured that only 2.5k cases of Testicular Cancer are diagnosed in the UK each year.  In terms of percentages of the adult male population, that’s a figure that would hardly register!

I then arranged for an appointment with my GP on 10^th June.  Following a brief examination I was referred for a follow-up at Harrogate hospital – which didn’t come as any surprise and didn’t worry me in the slightest.  After all, it’s best to get these things checked out properly.