Thursday, October 26, 2006

Day 56: More logistics, but the pressure is off

Today has been an interesting reversal.

I called the sperm bank, and late afternoon a nurse called me back. She explained what would happen, how long it would take, what the next steps were, and actually volunteered her name without being asked (The first time so far in my experience of treatment that I havent had to go fishing for a contact name)

I have to go at Monday 2pm. So I rearrange my work schedule (I had a final meeting to sign off some important negotiations with the hospital for my old job - which I finish on Tuesday) I move the work meeting to Monday AM so I can travel cross country and allow for a parking nightmare without missing my slot.

About 15 minutes later I get a call from the Chemotherapy nurse. She tells me I am going for a liver test on Monday AM. I ask whether the treatment will interfere with the sperm banking. She tells me I will be told when my sperm banking appointment is, so I explain that I've already sorted it out direct with them & it is the same day. She thinks it might interfere, so is going to go and talk to them.

I explain that I'd really prefer it to be rearranged anyway for a few days later if that is possible, and that I am totally flexible other than Thursday AM (My first day in the new job). So she is going to make some calls and get back to me.

Here's the thing though. For the first 54 days of this saga, it felt like I was the one waiting anxiously and concerned about the delay and the likely effect it could have on the spread of cancer and prognosis. But now I'm confirmed to be stage 1 and my markers are normal, I know that many people undergo surveillance, and that it is a 1-2 monthly affair, so for me the time pressure has eased off.

Dont get me wrong, I dont want to wait months, but another few days doesnt seem to me to be so material. The staff involved at the Cancer centre however, now seem very concerned to avoid delay.

How's that for irony.

Day 55: Decision made - a trip to the bank

So. I thought, and talked and prayed and mused some more. But eventually, I decided to go for the single shot of chemo. Which means that the clinical events to co-ordinate now continues.

I spoke to the nice clinic co-ordinator, who was a little relieved as she hadnt heard from me. (I know how it feels - it is usually me as a patient who feels that) and she was going to "book me in" for a trip to the sperm bank. She was v amenable when I said that as I had my diary it would be better if I could book in an appointment directly. She said she would tell the clinic to fit me in ASAP and gave me their number.

The rest of the day I was at work with "phone sperm bank" on my to-do list. But working and sorting out your health is tricky multi-tasking, and my long since learned behaviour is to focus 100% on the work stuff when I am there. So before I knew it, it was after 5pm and I hadn't rung.

Decided to work from home the next day so I could sort it out without the office based distractions.

Tuesday, October 24, 2006

Day 54: Good news, and a decision

So. The day arrives when I will finally get to see the consultant. We get to the clinic about 20 minutes early (the traffic and parking anxiety has got us well trained by now).

I get my cup of hot chocolate and we sit by the usual table. The clinic receptionist is not in yet - but when she arrives she comes over to our table and takes my details.

Its a very small thing - but makes a big difference to how I feel - that she didnt call me over to the desk.

We were called in 10 minutes early, and the Consultant began the discussion by telling me it was good news.

The raised tumour marker had gone back to normal levels, the CT scan was clear, and the supplemental pathology report showed no non-seminoma elements, so they had graded it as a STAGE ONE.

This is great news. It is better than the best I hoped for, and everything that I and many others had been praying for.

It is also - paradoxically - enough to put me off my stride. To continue yesterday's exam analogy, last time I came I felt like the boy who went to his mock exam having revised statistics, to find the question was about calculus. And this time I felt like the same boy who had switched after the mocks to study calculus in great detail, then pitched up to find an exam paper on statistics!

The consultant took me straight into the treatment he was reccomending, which is a single dose of one chemotherapy drug (complete with sperm banking!).

Rusty as I was, I remember from my earlier research that it had seemed that the survival rates for cancer at stage 1 were the same whether surveillance, radiotherapy, or chemotherapy were used - so I asked about that.

He clearly felt surveillance was an inferior option, and used my results to infer that given my medical history and the pathology I had some risk factors that would put him off surveillance.

He also seemed to be not very pro surveillance in general. He said it required very frequenjt monitoring, and even this loads you up with measurable doses of radiation from all the CT scans. Which is interesting. In all my research, it seems that in the US the clinicians seem very keen on radiotherapy at this stage, but the patient groups on-line have a preference for surveillance.

I had previously decided that if I was being offered surveillance, radiotherapy or chemo for stage 1, I'd have to be persuaded not to go for surveillance. Both the alternatives have some long term health damage as a bi-product (heart disease and other cancers in later life), and in 75 to 80% of people, no further treatment is necessary.

But the consultant's reccomendation changes the equation, since the single dose of the single drug is a relatively new phenomenon - thought (although no research to prove) not to have the same long term effects - and also not as bad short term effects (little or no hair loss, fatigue, immune system weakening etc)

We ask lots of questions, and in the end he is looking for a decision. I am quiet for a while (ruing my lack of revision on the right question!) and he says I dont have to decide there and then. He will book me in to see a nurse in clinic in a week.

But now, the professional side of me kicks in. I dont want to take up extra appointments - each time I do, it spends our local health funding, so I feel that each time I go in, it should be for some real treatment. I make the point that if I'm going to take half a day out it would be to persue some treatment, so I'd rather phone his office to let them know my decision, rather than put another extra step in my treatment.

We agree on this, and I get up to leave. He smiles and tells me there has been a memo round about my taking up the new role. "So," I say, "we will be seeing a lot more of each other".

We are back in clinic and everyone is, again, being super helpful. The clinic co-ordinator gives me her number as well as the consultant secretary's number. I get the feeling that everybody this time knew who I was - better to be a mystery shopper I feel.

But none of this should detract from the fact that I have 2 options I thought I'd never have.

On the way home I realise that despite all my research, and knowledge, I didnt ask a key question, which is "how would the follow up after the 1 shot chemo differ from the follow up if I choose surveillance".

No matter how au fait you are, there will always be something you have forgotten. I really wanted to drop him a quick email to ask the question. It's a simple 2 minute question - but I know I would struggle to get him by phone, and to waste a clinic appointment on that is a crime.

So I find myself making the decision without some of the information I want

I realise email can be open to abuse, but in this day and age it would make SUCH a difference.

The decision.....

Having done my research, the 1 shot chemo seems to reduce the relapse rate in the same way as radiotherapy. It also seems to reduce the risk of cancer in the other ball. So it seems pretty good. In summary then..... I can either:

Have no poison now - but have lots of tests for the next few years, and run a 20-25% of needing some fairly hefty poison later.
Have a (probably) milder poison now - and still have quite a lot of tests for the next few years, but run a <5% chance of some hefty poison later.

Having unearthed all the research I can, I'm going to reflect, pray, and sleep on it (in that order)

I'll sleep easier - feeling very thankful and very blessed.

Day 53: Like the day before an exam

Remember school. The feeling I have on the monday night is just like I used to have the day before the exam at school. A feeling that there is no more you can do and the anticipation of "the big day" that will alter the course of the future.

But eventually I drifted off to sleep, and before I knew it, it was the big day.

Monday, October 16, 2006

Day 43: More than I bargained for

So. I have had the CT scan. Went along to the hospital building. The Cancer bit has its own CT scanner which is located with the radiotherapy stations.

We arrived, and went through. Was a little sobering to now be mixing with people who have lost their hair (quite a few hats around).

We moved from the first to the second waiting area (!) which was 4 chairs facing 4 other chairs in a dog leg part of the corridor. There was a person there drinking what can only be described as copydex glue (the white gloopey stuff - v thick).... and sure enough, after the nurse came out, I was handed a one litre (ONE LITRE!) flask full of the same stuff, with a little styrofoam cup. To line the stomach apparently. It took 45 minutes to get it down (it isnt a consistency you can drink easily).

Handy tip: Thinking of starting your own cafe? Dont put this on the menu.

I was hurried to finish then went into the (very cold) room with a big CT scanner. Think large polo mint with human sized central hole and squared off bits at the top, around 1 metre deep, with a clever motorised table you lie on which moves in and out. (Come to think of it, as I'm writing, it reminds me a little of the magician trick where the girl is levitating and they pass the ring over her body - but it didnt strike me at the time, I was too busy being cold and intimidated by all the kit)

You lie down. Then they tell you they are going to put a line in, and inject "contrast" into you. This goes in via a spiral wire connected to a large container (circa 1-1.5 cans of coke worth). But it is hot. They heat it. And it feels mighty hot all over your body when they inject it into you for about 20 seconds.

So they did all this, then the machine tells you to hold still, and precisely when to breathe and when to hold your breath while the table moves you in and out of the polo mint.

Felt to me like I was in there half an hour, but my wife said around 15 minutes. No results there and then, but at least another stage has been done.

I realised when they were about to inject me with the contrast that I was shaking - not sure whether the cold, or the unexpectedly invasive nature of messing about with my body, or what - but what I did find is that I came out worn out and slept for 15 hours afterwards.

We often talk about GPs sending people directly for CT scans, and are getting new services from the private sector in mobile units that can visit local communities, so we've talked about CTs extensively. However, having had it, I'll never say the words "CT scan" lightly again.

So, now starts a week and a bit where nothing happens.

At least I hope nothing happens. In the sense of cancer spreading that is. But we havent talked about the effect of waiting on the progression of the cancer - its a question I'm almost too scared to ask, given that it will not result in any faster treatment. But the not knowing means it will be a long week.

However, monday's MDT meeting (which will take place without me) may well have some CT information to talk about if they get to discuss me, which might make the chance of a treatment plan emerging from next Tuesday that bit higher.

Back to waiting.

Friday, October 13, 2006

Dat 42: Devious but successful!

Hurrah! A successful day. I implemented (evil laugh) the plot hatched yesterday. Kate told me that all roads lead to the consultant's secretary, so I gave her a ring.

The object of the excercise was to establish
1) When the multi-disciplinary team meeting was going to be, where my case would be discussed.
2) By when I would need to have had a CT scan to allow them to discuss the results as part of discussing my case
3) Who is now in charge of ensuring that the scan happens in time for an informed MDT discussion, in time for my appointment with the consultant
4) Get the ball rolling on sperm banking. (Now there's a thing I didnt expect to see on my 'to do' list!!!)

Trying to be at my most charming, I ended up on first name terms with the lady, and as part of the process found out that the consultant returns from holiday on monday, the MDT meeting is also this coming monday - and then not for another month! - and that the radiology booking people handle the CT scan dates. I put the phone down and got out the directory for the main hospital number, and finally was navigated to the right person in the radiology booking department.

By a stroke of providence the lady had my details in front of her at the precise time I rang, and she was just about to send me the letter confirming an appointment on Friday 20th - with my consultation on the Tuesday, the chances of having the full CT scan report would be slim - ergo, once again the consultation would not have all the required information!

However, my strategy paid off. I politely explained about the MDT meeting on monday, and it would be so good if they had some results to talk about. The lady said she was sorry but the only thing available was a slot TOMORROW at the end of the day (3.40!) - but this would mean they could have the images themselves even if not the final report for the monday meeting.

So, I am elated. I now have a real person with a name (Mary) who I can co-ordinate with, the ball is rolling for a referral to the sperm bank, and my scan has been brought forward by a week so there is a fighting chance the clinicians will be able to have a reasonably informed discussion and my next consultation wont be the same waste of time the last one was.

This feature, though, of defaulting to no individual with responsibility, just a department, and of nobody thinking through the critical path for delay free useful treatment steps, is going to HAVE to be changed. 9 out of 10 patients would not have been able to do what I did. Nor should they have to.

But, wider considerations aside, I am making the most of the small victories along the way. Was able to give this news to my mum too, which was a lift for her as she was taking the previous lack of certainty and delay very hard indeed, as you would expect.

Best get to sleep now, ready for another day at the hospital tomorrow!


Wednesday, October 11, 2006

Day 41: Reflecting, then hatching a plot

Last night I was very down. The marker I Had had tested seems to be raised more than a bit, having found some sites to check that. Your mind begins to wander, to the extent that the odds of survival are worsening with each new bit of information. I began to think about survival stats from the later stages, which are good, but lower. They are not, however, the near 100% for stage 1 cancers.

I still hope in God, and believe in eternity, which takes the edge of the prospect of premature death. But not as much as all that. It still makes you think about whether, if there are only 2-5 years to go, you will spend them doing the right things. So much of life is inconsequential. I began to think that my biggest obstacle would be the preoccupation with inconsequential things, and wonder if I would be radical enough to get rid of them, if it came to it.

The night before yesterday's hospital appointment when I was up til 2am, I still didnt go straight to sleep. I read Luke's gospel. All the narrative about John the Baptist and Jesus' birth. Three Angel visits, but one pattern. The people are in a situation. The Angel shows up. He tells them not to be afraid. Then he explains what God is going to do. Addressing the fear part seems to be the first priority. THEN there is a plan.

Today I feel more up for it. OK. I am not taking this lying down. I have done my research. It seems that:

1. I'm likely to be in the "good" prognosis group as far as the US cancer institute is seen, provided the CT scan doesnt show other organs affected, irrespective of my raised marker.

If I am at stage 2, the normal treatment is radiotherapy (pretty toxic) although it is possible to get chemotherapy (also pretty toxic, but it depends on the dose) and the cure rate is high.

There are long term risks, nausea, and the additional issue of 2-6 months of being knackered - not great when I'm starting the new job - but I will just have to deal with it.

However, the likelihood of being sterile after either of these is pretty high, so I have decided to use the delay to see if I can get some sperm banked. I dont plan on having other children as my son is 9 and my wife doesnt want any more, but I have never wanted to go for vasectomy anyway, since you never know what tragedy life brings around the corner, and I wanted always to have the option. So now it will be trickier to do that.

It also gives me a reason to call Kate without risking becoming a nagging patient. I can use the call to see if I can get some information about my CT scan, and flush out who, if anybody, is actually in charge of making it all happen at the right time.



Day 40: The Oncologist Appointment

Falsie in place now for a week. Still pinching a bit and not altogether comfortable. Had had a relatively quiet week. A friend came down to stay last friday through til sunday. It was good to see him, although I laughed a lot and it put a lot of strain on my stomach!

Another good discovery in these days was an online community of people (hosted in the USA of course) who have also had surgery for testicular cancer.

But tuesday approached, and I was looking forward to making some real progress, to know where things are at and consider a treatment plan. I knew I was going to see the main specialist for the county for testicular cancer, who seemed very highly regarded by Kate, my liaison nurse.

I was really psyched up for it, although a 9.30 appointment meant leaving the house at 7.30 as it was at "the hospital with no parking at all."

I had a last minute panic and went over all my research until 2am. Probably not the best thing for tiredness really, so I wasnt too alert on the day. But I had that feeling you get just before an exam, and I felt rusty about all the reading.

We arrived at the cancer building at the hospital. Its more modern and quite nice compared to the rest of it. I noticed that the testicular cancer specialist guy is also the clinical director for cancer services as a whole at this centre - which seemed to add to the reputation that was being built of him. I felt great as his picture was up in the lobby so I knew who I would be seeing (amazing how little things like that help.)

We sat at a table, with our reading books brought from home (we're finally getting our act together with the waiting around like idiots thing). A free hot drinks machine was a nice touch, and we waited our shout.

The appointment started only 20 minutes after our time. However, that's pretty much when the good things came to an end. The specialist, it turned out was on holiday, so an academic registrar was holding the clinic. She seemed pleasant enough, flanked by 2 impossibly young girl students, and a nurse. So, together with my wife I'm in a room with 5 women to talk about my balls!

She went through many of the same questions about medical history and demographic details I had given to the urologist, and to the pre-op people at surgery, so I ran through it AGAIN.

It then became apparent that the histology results weren't back, and as there was no specialist, other than having a feel around at my false and my other testicle, and a chance to take more blood nothing was going to happen.

She explained that she would now fill in a form to order me a CT scan. I checked with her, as to whether all patients post testicle removal would have a CT scan, and she confirmed that they would. Why, then, I asked, didnt we just order the CT scan when I was having surgery the week before? No good reason, it seems, other than it's not the way things are done.

She mistook my sullen face for anxiety, but it was solely frustration. Frustration as a patient that the day I had hoped for some clarity and progress, was going to achieve nothing. And frustriation at a professional level, knowing that each visit spends valuable resources which had gone entirely to waste.

What she did tell me though, which was a surprise, was that of my 3 tumour marker blood tests, 2 were normal (I knew from the day of my op from the surgical registrar that all 3 were normal) but she told me that LDH was raised, at 1106, which she said was raised but not unusually so. My wife asked what the normal range was and was told 200 or 300 or something like that.

I asked about when PET might be used rather than CT, given that CT scans have circa 25% false negatives. This was news to the registrar who was surprised it was that high - I pointed out this had come from the national cancer institute as well as NICE, both top authorities on the subject.

I asked about whether, when treatment planning is done, the size of a tumour is measured as a diameter or as a cubic volume. (e.g. some guides distinguish between sub 4 / 6 cm tumours, but as the ultrasound had 3.1cm x 3.1cm 2.6 cm, this seems to be either 3.1cm or 25cm3 depending. Again no joy.

As we asked a few other questions, it seemed like the registrar didnt know much more than I did, so I lost the confidence to ask anything else.

Just as we were about to leave, however, she got the attending nurse to check the desk again and a print out from the pathology lab reults were now on the system. I remained dismayed that a consultation would be arranged when there was no guarantee of either a consultant to see or test results to view, but it seemed we had had some luck.

She read the results, and then so did we. This told me that the lump was a semolina rather than a tarantula (see my previous post). Which I thought was good news. It went on with lots of technical medical terms. Having said it was a seminoma, it went on to mention 2 of the other type of tumour and said they "have noted on routinely stained sections" which made me think that it was likely I had a mixture of semolina and tarrantula. Mixtures are not good. You treat them the same as a tarrantula.

It also said "Lymphovascular invasion is seen" and concluded it was pT2 - which means stage 2 cancer. It had got into my lymph system (whatever that is).

I had researched so much about the stage 1 options, having previously been told I had a clear X ray and clear blood markers. I wasnt really prepared for it to be more advanced than that.

In the end, the registrar did not really discuss any implications of this, other than that I would see the consultant in 2 weeks time, and they would book a CT scan and take blood.

Before I knew it, we were out. No CT scan appointment (computer was down) but we had a date for 2 weeks time to see the consultant.

I was feeling quite down. Dreading having to tell my mum as I knew she would be upset. And as we went off to a local music shop I realised that the lack of discussion about the implications would mean I would not be able to answer my mum's questions.

Next, I realised I'd lost my mobile phone. A great day.

When I got home, before I called my mum, I called Kate, the liaison nurse. I had had the presence of mind to get the print out of the pathology report to take away. As I went through it with Kate I noticed something fairly FUNDAMENTAL!

The print out had gote some characters missing from the right hand side of the page. The phrase "elements or carcinoma have.... noted on routinely stained sections" had got that gap in it. And furthermore it was followed by the phrase "However" and then said a supplementary report would be done to exlude non semolina differentiation. So I deduced - sherlock holmes like - that if the phrase however was used, it was more likely to be there if the missing words from the print out were that these other tumour types were NOT noted. That is, the result was saying it was a semolina, they hadnt seen the other types, but were going to do further tests to confirm that.

Astonishingly bad patient communication.

I felt much better after speaking to Kate, but it becaome clear to me that although she was a liaison nurse, she was not close to the workings of the cancer centre at the other hospital building.

I realised, on reflection that I had made the classic mistake that NHS patients always make. I had allowed myself to complete a step in the process and leave the building without any confirmation of a named individual to liaise with about my treatment, or who would co-ordinate the steps to ensure that everything was ready in time for the subsequent meeting with the consultant. WHY I ask myself, should it be up to the patient to remember to push for this.

It is a stressful time. Knowing that some spread has begun, I realise I had not asked the $64 million question - what is the effect on my prognosis of another 2 weeks delay in starting treatment. I still have not asked that question.

As I wrote in my first posts, the "short" wait time for cancer is a major improvement from previous arrangements. But I am still looking at 54 days from my GP visit to know how bad this thing is, and get a plan to deal with it. In the most celebrated case of testicular cancer, albeit more advanced, Lance Armstrong has surgery within 24 hours of visiting his physician, and starts chemo within a week. It puts our waiting time standards into perspective.

So despite all my education, training, and knowledge of the system, I feel pretty disempowered - to wait for it all to "happen" to me. And from experience to date, I'm not confident that they will schedule the CT scan in time for the results to go to the team meeting to discuss my case before seeing me the next tuesday. If the CT results are not through, we will waste yet more time.



Thursday, October 05, 2006

Day 32/33: Surgery and aftermath

We awoke early, and after calling the hospital to ensure there was a bed. (There was - banishing the anxiety the guy phoning the preivous day had sought to create)

The journey in was quiet. It made me think of when we go on holiday. I had taken my wife away twice earlier in the year, just the two of us. We often travel early to get morning flights.

The roads were clear, and we got there and took our stuff into the admissions area. We were greeted by a nice nurse who went through more paperwork, and put a tag on my wrist. We discovered I was second on the list, but the man in 1st had not arrived yet. His was a bigger operation, so it would be late morning if I was second.

The other man arrived, and the registrar saw him. The pre-op area is in fact a converted bay of the ward, which previously had 4 beds in it. Now one of the bed areas has an examination couch, and is sectioned off by a curtain. The registrar had a booming voice.

My wife and I laughed at the fact that in the NHS I would have to put my privacy and dignity to one side, as your most intimate details are discussed in earshot of total strangers and members of the public. There was an expectation that putting a curtain accross would make it private, but the sound carried just as well as keeping the curtain open, so everybody would hear what was discussed.

The other chap was having a kidney removed - probably by keyhole surgery, although they would open him up if it didnt work as keyhole. My wife and I debated the pros and cons. Would I prefer to be first (and hope they had not had a rough weekend and were alert) or second (and hope that the complex first op had not taken too much out of them!)

It was then my turn behind the curtain. The registrar ran through things, and I was marked on the groin and on the hand to show which side would be operated on. (I later texted my friend that I was reassured to see the mark on my groin on the correct side, but a little worried they might chop my hand off whilst I was under anaesthetic)

The anaesthetist came to see me, and I told him my history. "You seem to know a lot about this, and be using medical terms" he said, and asked if I was anything to do with healthcare. I told him I worked in the NHS. I wanted to leave it at that, as I wanted professional anonymity. However he probed to find out exactly what I did. I explained I worked for a Primary care trust. "Ah the dark side. I suppose you work in commissioning!". I confirmed his worst fears, that I did indeed work in commissioning and was soon to be director for commissioning with responsibility for the hospital we were in.

An interesting bi-product of my pre-op was that the registrar showed my wife the results of the blood tests (The nurse had said they werent back yet). All normal apparently. "Below 2" it looked like. Which, I reflected, a couple of days later, was a really good sign.

Once shown to my bed - a 6 bed bay at the end, I sent my wife away to the gym for her personal training session, and continued to wait. It was freezing in the ward. By lunchtime my legs were numb despite being fully clothed. Another chap called cliff was in the bed in the opposite end to me. A very jovial chap who had been in for weeks with dialysis, diabetes and goodness knows how many other complications. The cameraderie was good though. I sat and waited, reading my lance armstrong biography and listening to my walkman.

A nurse came and asked me to get into the surgical gown. I did so but put on dressing gown to keep some dignity. (The surgical gowns have a gap up the back to display your backside for the world to see). I realised that I would be unlikely to go home that day, as it was already the afternoon list. Finally a bloke with a trolley came. It was time.

We got to the small room in which they put you out which is next to the theatre. The anaesthetists teased me again. Cant get anything out of these PCTs he said as he tapped my hand to get a vein. "Just slap them around a bit", I said, "and you get something evenutally"

I met my surgeon. He seemed to be less than pleased I was having a falsie. He explained there are problems with them banging the other ball, but when I seemed resolute, simply told me I could have it removed if it didnt work out. The oxygen mask went on, and out I went.

I came to, at 5.30 with my wife in the chair next to the bed. I dont remember much about the rest of the day, although I do remember at 7.20 spotting that she was pretty bored (I was hardly good conversation) so I sent her home. I did a bit of reading and listening to music in the evening, and also had the all important use of the bottle to wee. (I had been told that some people cant wee afterwards)

I was surprised in a good way at how I felt. The falsie and everything down below felt perfectly normal, and although the top of my groin was a little tender and all covered in a dressing, I was really pleased.

In the next bay was a rather confused man who kept shouting for help every 5 minutes. I later found out he needed to be in supported accomodation. His alsheimers meant he was panicked at where he was. As was the bloke opposite me. Cliff and I tried to keep the bloke from getting up and pulling his catheter out, during the night. Sadly there was only 1 nurse on, and she took over 10 minutes to respond to the call button. I tried to explain that we would not use the button frivolously but were concerned for the guy's safety if he tried to do that again and she took another 10 minutes.

I thought that a long night awaited, with 5 minutely cries for help interrupting any hope of sleep. In the end, I put my mp3 player on, and went to sleep to music which was ok. We talked in the ward "restaurant" the next day, and the consensus of the patients was that something had to be done to preserve rest for everyone else.

There was a ward round at 8.30 and my surgeon didnt come, but his juniors did. One of them gave my scar a bit of a feel and a prodd and said it had all gone well, but that my surgeon would be likely to come down later and see me himself.

In the morning I got up and got my jeans on (not fastened - I couldnt handle any pressure near the wound) and had a wash and shave. I managed to nearly miss breakfast. The bloke next to me and I were told, after the event, that only the bed bound got breakfast brought to them. Everyone else had to go to the ward restaurant and help themselves. Only nobody had thought to tell us that! We still seemed to be in trouble for not having realised. We scrambled a bowl of cereal each whilst they packed up round us.

Eddie, the guy next to me, had come in during the night with an infection following previous surgery. He had a catheter in (which brought tears to my eyes) - but was suitably gobsmacked when he asked what I was in for and I told him. Nice guy though.

I felt so good this morning, and my groin area is still numb from the local anaesthetic they put in for me at the end of the op. So I decide to forgo the pain killers, to see how I'm actually doing.

I then began the wait for the surgeon to come. He had not said a time, and I had only his team's word that he would be coming - apparently he likes to do that. All in all he is a good surgeon I am told. But I wait and wait. I ask various people, and nobody can tell me when he will come. Possibly lunchtime, possibly after 5pm. It seems silly to be unable to go home solely because of this.

His team had said I needed Kate (the cancer nurse) to refer me to the cancer specialist. I decide I've had enough of waiting about, and to make use of the time I'll find Kate's office (I had seen it when I came in) and see if I can get to see her to talk about what happens next. I am in luck. When I tap on the door of the 4 person office, Kate answers it, and is able to come to see me at my bed.

She reviews my notes, and sees that they are planning to contact her in any case, so says she will fax off my details to the specialist immediately, and that I'm likely to be seen next tuesday.

A little later the nurse comes. They need my bed so I am to be moved to the discharge lounge(which is in fact the admissions area). It needs to happen right away (but I am trying to ensure I dont miss my slot for lunch, given the breakfast performance). Eddie offers for me to leave my stuff with him which I am happy to do, but the nurse needs to hand me over to the nurse in the discharge area, so it all has to take place.

I go have some lunch with Eddie and a couple of the women from the other ward. My middle now feels ok but I cant bend it much. So getting into the seat is a bit iffy. We have lunch. The food looks a bit tired and school dinner ish, but tastes ok. The veg looks so soggy I decide not to bother. We get to talking, and I explain that I've done hospital food tasting in my line of work and that at the rehab hospital I tasted, it was really good. The consensus from our little group is that it tastes ok, but looks iffy, and everyone doubts it has much in the way of goodness left in, after the cook-chill-cook process.

I then go to the discharge area. I realise I had not asked questions about what I am to do after I get home, as I was expecting to see my surgeon later. A junior doctor (house officer) is sent to see me and give me the spiel about taking things easy. When I ask what exactly I can and can't do, and can I get the wound wet etc etc she is out of her depth and goes to fetch a colleague (a senior house officer). I wait for some time. Getting very hacked off with all this now. I am uncomfortable, and in an area where I cant lie down, but am not comfortable to sit in their chairs. After 10 mins I go and find her. She is with the colleague. In the end he tells me to shower not bath, and that when the dressing comes off that should be it. (Previously I had been told my GP practice nurse would need to change the dressing). He also says no lifting / strenuous excercise for 6 weeks. There is lots more I should have asked him, but my wife is not here to prompt me, and by now, my patience is gone. I'm not concentrating very well, and I just want to be somewhere else.

2.10pm and my wife arrives to pick me up. We make our way out to the car, and - having got into it like a pregnant woman - and having put the seat to recline - we go home. I feel every bump in the road, but soon we are there.

I now have a little text community so I send off various messages. Within an hour, my pastor is round to see me. He's a really nice guy - really encouraging, and someone you can be yourself with - so it is no problem for him to come so soon.

So now recovery begins. I have the stack of DVDs lined up (Have decided to watch the west wing series again, which should keep me occupied). And I get to sleep and have a good night's rest.

Day 31: (Sunday) The big day approaches

Saturday was a great day. Went up to see my mum with my son - she lives in the town we go to watch football at, so we combine the visits with trips to see her. Was nice to see her, and with my son being there it meant things were not too heavy.

Footy was great. Our team was losing 1-0 at half time, but turned it around and won 3-1. A fitting last match, I thought.

Sunday AM was church. My wife decided not to go, so I took my son. It was a dedication. (like a christening, done in churches where people get baptised when older) A happy affair, with lots of relatives around the place. Stuart, my good friend, was speaking, and was on fine form. Very funny, but also anchoring me with some timeless truth.

We went home. I wanted to see some of our friends who know about what is going on in the afternoon. We ended up having a normal afternoon, with our leader and his wife visiting us.

I took a phone call in the early afternoon. My son picked it up. "Dad - it's ward 29" he said. A man's voice told me there had been a cancellation, and asked if I could go in straight away "as they now had a bed for me". I was totally wrong footed. I had been gearing up to the morning, and now it was perhaps going to happen right now. Also, working in the trade, I know that staffing ratios are very low on Sundays, so I wasnt keen to have an op on a Sunday. As I hesitated, the voice on the phone tried to tell me that there might not be a bed on the monday, as emergencies come in, so I might be cancelled. I REALLY resented the pressure, and the attempt to manipulate me into doing what he wanted. "Well, given that its cancer, I'm sure you will fit me in somehow" I said. He ignored my comment and went on saying how there were no guarantees of a bed and how lucky I'd be to get one on the monday and might have to be cancelled and wait more. A part of me was furious. There is enough anxiety about waiting for treatment with a potentially spreading cancer, without trying to play on that to get decisions from patients. If I had been more together I would have taken more charge of the conversation to challenge the manipulation I was hearing. But I was feeling too vulnerable for a confrontation, so I told him to try the next person on the list.

I found the attitude shocking. But once I was off the phone I went back to my friends and my final day before surgery. We went over for tea at my pastor's place, and our other friends came over for a takeaway. I fancied an indian, and my views prevailed (Condemned man's last request, and all that!)

Phone call aside, it was a nice way to spend the last day before the op. Feeling sad and scared inside though. But my pastor's daughter who has some physical and learning disabilities, was very perceptive. She was affectionate and cuddly which really lifted me.

Finally came back home at 10pm and realised I needed to pack a bag for the morning. Scrambled things together, then went to bed for the final time. I was a bit annoyed with myself for not getting an early night, as I didnt want to have the op when tired, and I had a smalle but growing sense of foreboding.

I was supposed to be nil by mouth from 12am, but as I hadnt finished getting ready by then, I thought "sod it" and had a final cup of tea at 12.30. I lay in bed closing my eyes thinking "When you open them again, there will be no more waiting"

Day 29 (Friday): Pre-Op

"I am going for preoperative assessment" I tell my friends, which is usually followed by a pause and a "WHAT?"

Pre-op is a funny thing. It varies depending on what you are going to have done. I am naturally suspicious to ensure that it doesnt just involve repeating things already done, and doing things that could have been done by a phone call.

We get up and go along to the hospital. My wife is not in a great mood at this. 3 times in 3 days to hospital is far too much in her book. She has a natural aversion to the places.

We are supposed to be there at 10.30 and scramble ourselves in at just after 10.35. The usual parking debacle has ensued, and before that the usual not getting ready in time debacle.

Yesterday I finished off at work. I have told them I wont be there for at least a couple of weeks. Technically I could go back in this afternoon, but I figure I need some space and time before the op. The op being on monday.

We have lots of nice things planned for the day, to follow on from the preop. A visit to a new gym near where I will be working in my new job. (Did I tell you I got the job. The lack of speedy surgery had the silver lining of allowing me to do my interview. I thought I did a crap interview - my head was elsewhere - but I got the job anyway, partly as my assessment centre results put me in the top 8% of applicants)

I also planned to take my wife shopping for some nice clothes and have lunch together.

Pre-op however, is not like that. We sit and wait in the waiting area. It is full of the kind of chairs you find in day centres for old people. A few old magazines (I never learn - I never come with any reading)

So we sit, and wait. And wait. After about 40 minutes a nurse calls me to take my blood. Fortunately she is good at it, so it does not hurt like the previous day. Funny though, that I've now had blood taken 3 times in 2 weeks. I think to myself that they could have used some of the stuff I gave yesterday - but of course the GUM people dont share anything with anyone else. Not that I would mind, of course.

I go back to my seat. We sit and wait. Then we wait some more. 11.30 passes. 12.00 passes and 12.30 approaches. Finally, I wait until there is someone at the desk and ask how much longer we are likely to be. I then see that there is a whiteboard on the wall with people's names on it and a little numbe in a circle. They are seeing 10 people at today's clinic, and I am number 10. They have still to see patients 7, 8, and 9. But nobody thought to tell us. I ascertain that it will be at least 30 minutes. At least we can go find a drinks machine.

My wife and I wander through the ward area to the lift. As we go, we see a young asian bloke - about 25 - "walking" down the ward. Actually what he is doing is standing with his legs as far apart as they go, holding his balls, and swinging his hips so a foot goes forward. His face, full of that concentration that comes with impending agony. We get through the ward and out of the door to the lift area and we both laugh hysterically. It looked so comical. I really feel for the guy actually - but it was the LAST thing I needed to see 3 days before the op!

We get back to the waiting area - I go ahead of my wife - and find a nurse is calling me. I get weighed, then she takes me into a small room. There is nowhere for my wife to sit, and she is not back yet anyway. I explain we have been waiting almost 3 hours, to which the nurse apologises. She tells me they only have 1 doctor and 1 nurse on today. We sit, and largely go through more paperwork, just as we did before. Many of the same questions. She tells me that the operation will require me to stay in overnight. I tell her that the urologist had previously told me if I am operated on in the morning (and I am supposed to be there at 7.30am) I am likely to go home same day. She asks if I have any further questions, but by this stage she has not inspired confidence in me that I will be able to rely on the answers. I ask about whether to shave my groin area, and what part. She says I can shave it or they will shave it - but does not really answer my question about which bit. I point out that the op needs to say that I will be having a falsie put in as well.

The room I am in is a small office. There are patients notes on the floor next to me and on the table. I notice the names and addresses of 2 patients on their files. Not exactly patient confidentiality - but it is obvious they are having a bad day.

I then go in to see a doctor, and at this stage he does a fairly thorough physical examination. He checks everything, and tells me it is all good. He runs through things and I point out that his paperwork does not say I am having a falsie as well. He adds it on, but says the main paperwork to ensure it is put on is the consent form which I will see on monday. I tell him I want to make absolutely sure they dont remove the wrong one, and he tells me that I need to ensure they mark up the right one on the day.

It is about 1.40 and we're finished. I've had about 15 minutes of contact with clinical staff, but it has taken over 3 hours to do, and the plans for the rest of the day are scuppered, as my son is back home in 2 hours. We do manage a trip around the gym though. It is nice to be in an environment that is all about healthy things. Hospitals are by nature illness centres.

We head into the weekend.

Sunday, October 01, 2006

Day 28 (Thursday): Another joyful chapter (Part 2)

We get up early and head off for the city's hospital clinc again. Fortunately at 8 AM there are one or two spaces, so at least we can get into the public car park near the hospital.

GUM clinics are funny places. It is not apparently clear where to go or how the system will work. I was intending to go in with my wife and have a chat, and see whether anything would need to be done about the rash I'd found and whether it would impact on being able to have the surgery.

However, when I got there, it was all about "the system". The system is that even if coming together, males and females see the clinical staff alone. It is understandable I suppose if people are coming about Sexually Transmitted Diseases and one partner cant face telling the other than they dont want to be seen together, but are in fact concealing things from the other half. But it is a jolt to the sytem to me. My wife was there to be supportive, and with everything going on I really wanted a second person with me to help me remember what they said.

But she takes her numbered ticket from the womens section, I take my numbered ticket from the men's section, and we then wait in the small mixed waiting room. We wait for about an hour.

My wife is gone first, and a bit later they call my number - and then call my name too! I had found the "you are a number" bit rather depersonalising, but it was for confidentiality reasons I thought.

I go through with a cold but efficient lady through the waiting room to an "interview room". She tells me that she needs to take details to create a record for me. A record with a number I will have to quote whenever I go back in.

I am sitting on the opposite side of a white desk in a cramped room with an open door to a staff area. The desk has graffitti cut into the varnish on the table - much like being at school. But it seems a hostile environment. I want to shout "Have a heart - I'm having a hard time here" but the atmosphere seems geared to a segment of society that is in the waiting room, or is expected.

The lady thrusts a form at me and brusquely tells me to fill it in. (I wonder how I would have felt if I was dislexic, but fortunately I'm not.) It is a bit frustrating to have to give the same details my GP has, and the hospital took the previous week - but GU specialties dont transfer information from other specialties - all in the name of confidentiality. Since when did confidentiality require a lack of co-ordination.

Having filled in the form she asks me some questions, and then gives me another number and I go back through the mens waiting area to take a seat back in the mixed waiting area.

I noted that my wife had been called by a warm and friendly sounding bloke for her first bit.

I wait some more. And I wait. And wait. Eventually a bloke comes in and calls my number again, and I'm taken to a clinic room. We go through the 20 questions routine, a fair bit of which is repeating demographic information I've already told the other woman - and the nurses the previous week. But we do then get onto the examination.

He examines me, then tells me he is a trainee doing GUM 1 day per week, and asks if I mind him getting the consultant for a second opinion. It turns out to be nothing to worry about - likely to be a mild allergy reaction, so I'm OK. But the trainee does a good job of telling me I should really have lots of tests for STIs whilst I'm there. The prospect of a gonnhorrea test involving an internal swab in my urethra has not sold me on the idea - and there will be plenty of invasive stuff to come by early next week, so I decline.

They do take a blood sample though. (I am thinking to myself that they could have just used the one I gave the previous week)

When I return, my wife is in the waiting area and we leave - It is 10.45. Two and a half hours of waiting around, for a 10 minute consultation, but at least I can get into work for my last half a day.

It would be so easy to make it a less humiliating experience in going to GUM. An open reception desk instead of a hatch (we're not dangerous people) A poster at the door (even if no person)explaining the sytem and what will happen. A chance to fill in all the paperwork on-line before you go instead of a wasteful and costly first interview. Regularly cleaning off graffitti. A little less deluge of 70s style public health posters about diseases "in your face".

All entirely possible and not expensive to implement.

But I'm back to the last bits of normality before my pre-operative assessment tomorrow.

Day 26: Another joyful chapter (part 1)

Was having a rough day. Had taken the morning off work, and then decided to have a bath to relax. Whereupon I noticed a kind of rash. I went straight off to the doctors thinking "Not ANOTHER thing to deal with". I was fearing either that it was related, or that it would interfere with my treatment.

Because of where it was, I had the joy of attending the local GU clinic. I get in the car with my wife, and we look at the timings. The clinic is open for drop in 2 til 3.30. We get to the hospital in the centre of the city where it is based. There is NOWHERE to park. Mostly when people say that, they mean the car parks are full, or that it took 10 minutes to wait for a space. No. I mean NOWHERE. Having driven round for 30 minutes, including the nearby public car park (also full) and side streets in the one way system (also full) we evenutally in desperation park in an NCP car park half a mile away. I cant imagine being ill and having to do this.

This idea that we encourage people to take public transport by making inadequate provision for parking is indeed an evil creation in the minds of the politically correct but out of touch with reality brigade. Life is difficult enough as it is, especially if going to hospital. (The main cancer centre for the region is based at the parking starved site). It has been like it for years, and everyone directly involved has come to terms with it. But as we go in I am angry that it should become normal. Tesco would not accept that its customers complain and have to spend up to an hour to get into the shop and walk with heavy bags - yet in the public sector we wring our hands at such problems for the vulnerable and sick.

We get into the clinic. There is a "men" bit, a "women" bit, and it is in the "women" bit that there is a mixed waiting room. So I feel a bit like a trespasser to go into the women's bit, but given that my wife is with me, we need to be in the mixed waiting room. We go to the hole in the wall that is where the receptionists are holed up, but only to be told that the information my GP gave me is 18 months out of date, and there is no walk in clinic in the afternoon. We ask about an appointment "You cant be seen for a week" says the not unpleasant but thoroughly assertive receptionist. I want to say "Yes but it could wreck my cancer treatment" but for some reason - why? - I feel the same sense of disempowerment that most people feel dealing with NHS authority figures, and I say nothing. We are told there is a drop in in the mornings, and to get there early at 8.30 to be seen.

So we walk the half mile back to the car (to add to the joy of the day, we have forgotten our wallet/purse, but fortunately the nice man at the end of the intercom at the car park lets us out anyway).

I am really frustrated now. It has taken all afternoon with no result, & now will also take some of the following morning too. I only have 2 days to finish up all my work related things before I'm in for surgery, so I really didnt need this amount of time gone as well. And I continue to wonder whether there is going to be a problem with having my surgery, and if there is a delay whether it will make a difference in the long run.

Tuesday, September 26, 2006

Day 25: A great weekend, then struggling

Had a fantastic weekend at a cottage on the edge of the cotswolds, arranged spontaneously on Thursday. My son stayed with his friend (our church leader's son). My wife really made an effort to ensure we had a special time. Lots of time to ourselves. Luxury double jacuzzi. Positively honeymoonesque. Felt on top of the world. Keep getting worried texts from my mum and my sister - reassuring them.

Then, out of the blue at work today, one of the board directors who I am very fond of came to see me, and gave me a hug, clearly moved by the fact that I'm "battling" cancer. (Funny how we begin to think in cliches and stereotypes when the C word is mentioned. I dont feel like I'm battling - more like walking the slow calm walk of the prisoner who goes to a fate he doesnt want but cant control.)

Margaret's warmth, as a "normal" reaction to something of a great magnitude, broke through my coping barriers, helped me see that this really is a big deal, and moved me to a couple of tears. And by the evening, I was beginning to feel some fear, and then a deep sadness at what is up ahead. After my wife went to bed I stayed up and balled my eyes out for about 20 minutes. I wanted to phone my mum or my sister - but what's the use of a phone if you're too upset to speak!

So I am doing less well today. It is now less than a week until I have the operation. As we make the arrangements (for lifts and pick ups on the day) I am thinking ahead to waking up after the surgery and in my imagination I feel utterly desolate.

A part of me feels bad and self indulgent for being upset, given that so many other people are desolate at the thoughts of weeks to live. But it is what it is to me, and it has to be ok to feel what I feel.

I remind myself that the wisest chap in the world once said "each day has enough trouble of its own. Do not worry about tomorrow...." Fortunately in the context of a father in heaven who loves you - even when things are looking bleak.

I think I might ring the nurse for a chat tomorrow or wednesday. Can't underestimate the importance of having the option to do that, even if you dont use it.

Time for bed. At least I'm sleeping well still. This stuff is hard enough without feeling knackered as well.

Wednesday, September 20, 2006

Day 20: Semolina and Tarantulas

Am arming myself with some background before I go and see my mum to reassure her. Some useful stuff that it would have been really good to have been told by the hospital, mainly from the Cancer Research UK site and the US National cancer institute. (I know from the day job that you have to be careful with internet sources about health) Here's some stuff worth knowing:
  • By 2000 the 1 year survival rate in England and Wales was 99%. Pretty good as lots of improvements made since then, and it has been rising every year.
  • 5 and 10 year survival rate 98%.
  • Best survival rate among people of my age group (15-39)
  • Only 3 in a million people in the general population will die from Testicular cancer.
  • Only between a 3 and 5% chance, if it is cancer, of it coming back in the other ball.
It is interesting to me that the consultant didnt have these facts and figures. I wonder if it goes back to the fact that culturally the fact that someone is a consultant used to mean people would take whatever they said as true (He did tell me it was treatable with the best survival rates of any cancer). However, like lots of people nowadays, we're that bit less trusting and want to know for ourselves - so published statistics actually help us more than, possibly, the clinicians realise. (Although I accept I'm not your typical patient, so maybe its me. Given the internet traffic I suspect not).

The consultant also talked about 2 main types of testicular cancer: Seminoma and Teratoma. The first type being less aggressive, the second being more common in people in their twenties.

So - to help you remember. You may not like semolina, but lets face it a tarantula down your trousers is far more likely to be spoiling for a fight, and mobile.

Right. Off to do more telling.

Tuesday, September 19, 2006

Day 19 again: Telling People

This evening has been all about telling people. Most of the big events in our lives involve telling lots of people the same thing over and over again. "I'm getting married"... "Its a boy".... "He passed away"..... It is one of the duties of rites of passage.

But telling people about this is different. I had told the 4 guys on the leadership team of my local church -and the main leaders wife, and another guy I meet regularly to talk and pray with. My wife told one other person. And I had told one guy in the church who came over to pray with me.

Work was tricky, but OK. I told my boss I was on the 2 week cancer pathway - that is all she really needs to know - it gets me the flexibility I need with regard to leave and consideration. And that was enough.

However, one of the things about being a christian in a community church is that we really are like family to each other, so we're usually very open about the struggles and challenges in our lives. So it has jarred and been really difficult to have a major issue to face, and then keeping a list of who does and doesnt know. Life is very complicated when you do that. I could never lead a double life - far too draining.

And yet, I really dont like the idea of lots of people pitying me - or to be frank lots of them looking at me with curiosity wondering what life is like without one ball, or which side it is, or whether it makes a difference to my sex life etc etc. They probably wouldnt but I'd think that they would. So I am continuing to have an "inner circle" of people who know.

I have told my son I've had some tests and need an operation, which is I think (hope) enough for now. I think that if I tell him the detail, he's likely to tell friends at school, and friends can be fickle and use information you tell them against you to tease you.

I've called or seen most of the people who know. Now I have to extend that to tell my mum and sister, both of whom are going through really difficult times with other issues. I've taken tomorrow off, and will drive up to my home town to see my mum and tell her face to face.

One of the things about telling people is that you go through a narrative, and it becomes more real to you - you have to own it, to participate in the story and acknowledge that you are the person you are talking about. This is really hard at first. But it also helps to start to adjust to things.

Now its late in the evening, I'm feeling fairly philosophical. On the spectrum of "Its nothing / Take one ball / take both / take balls and lose hair / inoperative so die prematurely / take balls lose hair but die prematurely anyway" I'm only one down from my best case scenario at this stage.

I'll keep you posted.

Day 19: D-Day

Today was the day of the hospital visit. I went to the gym first thing. Was hard when I got back as my wife was nowhere near ready so we entered our usual cycle of me stressing that we're going to be late, and her continuing to get ready - sadly she only has one speed, and doesnt usually cut things out of her routine. So we left late, and raced against the clock to not miss the first appointment (an ultrasound), with me sullen and angry as I drove in silence. That's the thing with all this stuff. Part of you wants there to be special rules, special consideration of how you are feeling, and special effort to make sure things arent more difficult than they need to be. But at the end of the day people are people, and even a heavy duty situation like this is not always enough to motivate or cause change. We're habitually late for everything (although to my intense annoyance, my wife manages to get to her own appointments on time)

So, hardly the best start. Then came the "nowhere to park" saga followed by a wander around the hospital looking for an entrance. (Embarrassing as I used to work there - but given the obscure place we finally found some grass to park on (all spaces full) we were approaching from a totally different side - where nobody had thought to put up signs)

We finally made it - not 15 mins early for our slot as requested, but at least on time. Having waited a little while we were called through to a second waiting area, where we waited some more.

After being there a further half an hour, we had seen 2 patients get scanned in the 4 scanning suites, but lots of people walking in and out of the rooms - comedy like. I realise I'm sad, but I sat there thinking about the fact that ultrasound scans cost around £30, so the entire suite of rooms and all the staff were doing about £60 worth of work per hour - not nearly enough to cover the costs of all their salaries plus the high tech kit.

Finally, a jovial chap with a northern irish accent came to the waiting area and called out someone elses first name but my surname (!) We cleared it up and in I went. I am to drop my things and hop on the couch, and am not to mind the young woman med student who would be observing. I notice I've gone into "being done to" mode so am not really bothered about all my wedding tackle being on display to this woman - but fortunately to aid the process the lights are dimmed.

I'm squirted with what feels like 2 tubes worth of KY jelly, and he gets to work, rolling what looks like a phillishave (but thankfully isnt) over each ball, while he enthuses to the woman about the screen and the way one of the buttons makes focussing so easy. He also tells her that testicles are a doddle as things show up in one of 2 places.

I'm asked to clean up with a big paper towel and get dressed. THe lights are about to go on so I'm a bit hurried with the cleaning up - and I cant see - so before you know it I'm dressed, although my stretch boxers have now got about half a tubes worth of KY still in them and now feeling wet and gooey! (Quick trip to the loo sorts that out) but am asked to wait for my results - which I am given in a sealed envelope to give the consutlant in the afternoon.

It is a strange feeling. Knowing that something with monumental life changing consequences is in this envelope - which I have to carry, but I, unlike the sonographer, do not know. He knows when he looks at me, but he's a good poker face.

My wife and I go for lunch nearby, then back at ten past two to see the consultant. I am told the ultrasound suggests its iffy. They dont know for sure, but in these circumstances the only way they can know is to remove the testicle. He immediately reassures me that I can function perfectly well with one, which will compensate for its friend not being there (my words not his, obviously!), and although there is a risk that it will turn out not to be cancer, the risk is worth taking as where it IS cancer, removal is needed to stop things spreading. He tells me it will make no functional difference to me and therefore is not a big thing to lose one. "Easy for him to say" I think. "Easy for you to say" I say out loud.

We talk for a bit longer - the surgery is done as a day case but needs 2 weeks off work. I ask about having a false one. He puts me off with stories of falsies "moving" and being uncomfortable, getting infected and having to be removed. How often I say? 30% of the time he tells me.

He explains that they will remove it then it goes to the lab for histology (which I know from the day job means they cut slices and study it). He says the histology takes a couple of weeks for the results to come back, then the following thursday the cancer specialist meets with the urologist and they review that week's cases and decide what to do together.

He says he hopes they can give me a firm date for surgery today, and that they can operate in the next few days.

This is faster than I had thought. Very little time to adjust (the little fellas have been together 37 years so some time to say goodbye is in order!) The other thing I cant help thinking about is that I've got a job interview on friday (In the health service when they reorganise, your right to hold your job goes, and you have to apply again)

I am apparently to go and get blood samples taken and a chest X ray done whilst I am there. I'm quite impressed with all of this - that they have enough slack in the system to allow for me to take up a couple of extra slots. (Although I still find it strange that hospitals group everything together and do it in sections. One big area where all ultrasounds happen - then one big area for outpatients - then one big area for all blood samples to be taken - then one big area for X rays) The irony is that the nurses in the clinic could have taken my blood without a need for another "department" or queue. We do lots of queueing. Although I think about how it could be improved by streamlining it, I'm basically happy that its being done on the day.

The consultant doesnt rush me, but I run out of questions. I am to get to meet Kate who is a nurse specialist and will give me a contact number so I can call her anytime with further questions.

I'm letting it sink in, and we're being sent off to bloods and Xray, when the Nurse calls us back. Kate has apparently arrived so they want us to see her now rather than when we come back. Bit of a shame as there hasnt been enough time to digest and process things to come back and formulate questions. She is a young bright professional looking woman, and she asks if I want her to go over anything again. I ask again about the prosthesis and complication rates of both that and of surgery. She tells me the problems with the prosthesis are relatively rare - only 5% of cases, and extremely rare that they have to be removed. I feel better - although it is a bit disturbing to hear two contradictory bits of medical evidence within 5 minutes of each other, and makes me wonder - and hope - that there are not similar discrepancies about the other things I asked about, such as treatment options. I'm comforted more by the fact that the consutlants comments seemed to line up with the internet check I had done.

I tell Kate that I'd rather surgery early next week than later this week, for practical reasons. I instantly know that this will not be a consideration. She tells me politely that I will have to go in whenever there is space on a theatre list. Which I understand - but its hard to adjust to everything else in life taking a back seat to this new reality that wasnt even on the radar until a couple of weeks back. I had hoped that if it didnt make a clinical difference, I might be able to plan things and get a bit of flexibility. But it reinforces the fact that I have entered a different world. A dimension where I'm not a bloke with a life and a family and commitments. I'm a patient and my first priority is now to be wherever I'm required to be, and fit everything else around that.

After a circuitous tour with various waits along the way, we take the chest X ray back to the clinic, and the nurse comes and tells me that it's clear. Good news, as I understand fromt the cancer sites on the internet, since if the chest X ray shows cancer spread to the lungs things get a whole lot more serious.

We are told they cant fix a date for surgery until the other surgeons are next in, the next day, so Kate will know tomorrow. I decide to call her tomorrow afternoon.

And so, five hours after it began. The hospital visit is at an end and I must face going back and marshalling the rest of my life.

Day 17: Humour

I have decided to watch out for the best humour throughout my experience. So far, the prize is for one comment, head and shoulders above all the rest. My friend Pete from my church came over to pray with me the other day. On hearing that I fear I might lose one / both balls he paused and said "You'll just have to get a bigger car".

Sunday, September 17, 2006

Day 16: The wait continues

A week has past. I havent added any entries as I've been trying not to think about things really. The good news was that the day after the letter I got another letter with a clinic name for later in the day on the day I go for the ultrasound. Then another letter reminding me about the second letter.

So I have lots of letters - but at least a reassurance that I know at least the surname of the consultant I will be seeing.

There was a drama on TV this week called "losing it" with Martin Clunes, about testicular cancer. How about that eh? Rather like the effect when you're expecting a child, hitherto unseen baby shops seem to sprout from nowhere and you wonder how you managed not to notice them before.

I taped it but havent been able to bring myself to watch it.

I was able to speak to a GP that I work with, who gave me some of the alternative things it might be if it wasnt cancer, but beyond that there seems nothing else to do - so I've been just getting on with my life as if everything's normal.

A few of the guys in my church know and have been praying for me. One of them offered to come with me on Tuesday - but my wife has said she'll come.

So what of the future? I'm trying not to speculate, but at the same time, thinking I need to make the most of what could be my last few days with a full set of equipment! But that's hardly the most romantic motive is it!!!! So life continues as "normal" for now.

More news in a couple of days, on the fateful day.

Saturday, September 09, 2006

Day 7: Friday - The Letter

Had a great day today. Involved in an advisory group helping with long term strategy, which meant a trip by train up to London. London in the sunshine is a vibrant place full of energy and inspiring of hope and optimism, I thought to myself as I walked back to the station. "I feel like the luckiest guy alive" I thought, satisfied with a days work I enjoyed, a wife and son that I adore, then I chuckled to myself "but for the small blemish on the otherwise great landscape, that I might have a life threatening disease that may well lead to losing parts of me that I'm rather attached to". Emotions are funny things. But at a deeper level, I do retain a way of living life fuelled by gratitude, and a firm belief that even the most dire experience I've had can be recycled into something redemptive.

I was beginning to think I'd need to send out a search party for any contact with the NHS about my situation, but my wife texted to say that "the letter" had come. Which was a relief. I was not "lost". Although when I got home to read the letter all was not as I would have expected.

The letter tells me an appointment has been made for me for "US TESTES" at the Radiology department on Tues 19th Sept (which is Day 14 in NHS terms, although Day 19 for me). Things I hadnt expected:

The letter is signed "Yours sincerely, Radiology department" - So far no named individual is taking any responsibility for me (that I can see). A long way from "an NHS that is fair to all of us personal to each of us"

There is a standard " coming for an ultrasound" leaflet, but I am surprised there has been no explanation about what is going to happen and where "having a scan" fits into the next steps following referral. Fortunately I have checked out the cancer websites so I know that US testes is not the name of a new US navy vessel, but Ultrasound and CT scans can be used to assess whether a lump is potentially cancerous.

I fully expected I'd be seeing a consultant, and ideally having any necessary scan as well, but the letter implies I turn up, get my scan, and go away without any results at the time. It does seem rather like the hospital have squeezed in a contact, on day 14.

The standard is supposed to be a maximum of 14 days from referral to first outpatient appointment - not simply a scan. While they have obviously squeezed something in just inside the maximum waiting time, unless it turns out they have plans for me to see somebody whilst I'm there for an outpatient appointment, it doesnt look like they will meet the standard

The letter ironically also points out that if you were to miss your appointment without giving notice, you cant have another appointment - fair enough for most medical conditions, but brutal in the case of a potentially spreading cancer.

So tonight I've decided 2 things:

Firstly, I'm going to phone my GP friend who offered to give me some advice. (I'm fortunate in that respect)

Secondly, on monday I'm going to make however many phone calls it takes to find out the name of an individual who is taking responsibility for my treatment, and also to find out what is going to happen and when I'm going to be able to meet that person to get a clear idea of the way ahead.

If and when I get through this, perhaps we can change things so hospitals provide a human, personal link, rather than an automated anonymous letter that tells you that "the machine is processing you"

So. Ten more days of waiting begins tomorrow.

Friday, September 08, 2006

Day 6: Thursday

The rest of Wednesday was about telling, and waiting. The telling part is funny. I wanted our church leader to know, and his wife. A good friend of my wife also would be told as she is good at praying for people in tough situations. I decided not to tell our wider family, including my mum, given that everyone was dealing with the family situation from the previous few days.

I decided I would tell her once I'd had my initial consultation if it looked likely to be going any further. I hope I dont regret that.

Its funny really. I didnt want too many people to know. Somehow embarrassed about it. Especially given the potential for surgery, I wasnt sure how many people I'd want to be speculating "has he still got them both or not". I'm sure others are perfectly open about such things but for me some things are not meant to be public knowledge.

The waiting set by mid afternoon. In amongst all the negativity about the current government, one of the truly great things they have done is bring in maximum waiting times for people with suspected cancer. First consultation within 14 days of referral, diagnosis within 31 days and treatment start within 62 days. I know all this because my team at work are responsible for making sure it is happening.

But that is a different world. In my work world, the cancer waits are amongst the shortest - and they truly seem very short. We've been working so hard to get non cancer care down - this year we'll have an 11 week maximum wait for a first outpatient consultation and a 5 month max wait for surgery. Most of the time Cancer is therefore seen as an area that has already acheived short waits.

But now I'm not an NHS leader, I'm me. And I'm on the other end. Now all of a sudden, 14 days seems like an age. and 31 days to know whether its cancer and how bad it is. That seems like an eternity. I'm only 4 hours in and I'm powerless. Waiting. Being the "patient" - in the literal sense of the word.

There is no knowing at this point whether the waits involved will make a difference to things. But that's not a great place to speculate from. I am wondering even now whether we might later find a surgeon saying "if only we'd seen him a week sooner we might have saved his testicle / his other testicle / him from needing chemotherapy" etc etc. - because the one thing my doctor could not know was how fast things internally would be progressing during this period.

It's now 1.45AM on Friday morning. And I still have not heard from the hospital. As someone who has worked in industry most of my career its hard to defend a system that leaves people dangling. What I needed above all was certainty. "I'm going to fax this letter off. They will call you between 3.30 and 4.30 this afternoon to agree an appointment with you for some time next week. If you havent heard by 4.30 then ring up Angela directly on this number and mention my name and she will sort it for you" That's what I needed.

The other thing I've done whilst I waited is looked on the internet. I stuck to the more reputable sites that I had heard of (theres a lot of dodgy advice on the less mainstream health sites). What I saw was not all that comforting to me. It seemed there is one standard response to suspected testicular cancer - removal. I was hoping (and still hope) that there might be a "remove the cancerous part" option, if it comes to that.

They also do a scan (Ultrasound or CT) and then maybe a biopsy. Which sounds not too bad. The thought of the process I've embarked upon continuing for at least the next month is a tough one though, simply because the rest of life doesnt go on hold. I still have to apply for my job, and start a new job, manage a newly merged organisation, make staff redundant, take difficult decisions to address a mounting financial problem in the new organisation I'm likely to get a job in. Like lots of men, I'm not great at running multiple agendas. I can do complicated at work, or complicated at home, but both at the same time is a different matter.

Anyway, I think I'm now up to date. More news once I have it.

Thanks for reading.

Day 5: Wednesday AM - Finding out

On Monday I was due to go to London, and on Tuesday I was focussed on helping my wife with the family situation, as more sad details emerged, so by Wednesday morning I had done nothing.

I had no meetings first thing, so I hot footed it along to the local surgery. The mornings do not operate an appointment system, just first-come-first-served on the day.

Like, I'm sure many people, I often put off going to the doc's. Largely thats because I work about 30 miles away, and surgeries operate only slightly extended office hours. What I need is a surgery which works like a retail park, with late night opening.

Anyway, I put my name down to see the main Doctor. I know and like my doctor. In fact his wife is a very good friend of my wife and we've been out together socially. It feels just a little bit funny to see him again in a work context, but he's such a nice guy I get over it. And the alternative is seeing his woman colleague. Which, for my allergies I have no problem with - but not for this.

I'm in to see him, and waiting for my "perfectly normal" speech. But it doesnt happen. He says he doesnt like the look of it. He then checks my "lymph glands" (apparently) and says "well that's good". The realisation that he is checking for a potential spreading of cancer casually strolls into my head, nonchallantly. Doc is good at nonchallant. But, without any sense of doom he is immediately telling me he will be referring me to the hospital, advising me that treatment for testicular cancer can be fairly straight forward, and that people do go on to have kids even on one ball.

He doesnt rush me, and tells me to take someone with me when I go, as there will be a lot of information to take in. I chat that I remember the hospital's service won an award for giving their patients cassette tapes of the consultation so they could go back over things afterwards.

He tells me he will fax off the referral and the next step will be that the hospital will contact me.

I get back in the car to go back home and tell my wife. So likely was it that it would be "nothing" that I hadnt told her about my shower discovery. So I go back. I dont even park the car in the drive as I'm thinking I will drop in, let her know, and then get on my way to work.

But then when I do tell her it begins to sink in. I'm being referred for a suspected Cancer. The Doc's words come back to me that the chances are about 50:50.

I get that sinking feeling inside. I' ve had it since Saturday anyway due to the family situation, and this just seems like another trial to add to an already difficult week.

None of the other circumstances of life give any kind of elbow room to this rather monumental event. You do feel they should. Some kind of respect "not now - he's got a major blow coming his way" - but not even a dignified pause. I'm part way through reapplying for my own job due to NHS restructuring (an occupational hazzard) and I'm grateful I had completed the assessment centre the previous week, or that too would have pressed in on my time.

I make a call to Stu, my friend from church. He always watches out for me. Its one of the good things about my church - we ensure everyone has someone who is particularly watching out for them and praying for them. Stu has already been out with me for beers on monday night to talk through the family news we'd had, but he doesnt mind me calling again. As I talk to him, and each time I verbalise it, the reality of the situation hits home - Im pacing around the garden, on the phone, tears falling.

My boss is the next call. She is good - she tells me to take as much time as I need to get my head around things. I just about keep my voice, but her kindness seems to emphasise what I instinctively realise - this could be a rocky road ahead.

Day 1: 2nd September - A thought in the shower

Day one was Saturday (or was it friday?). Fairly inconsequential really. In the shower, I thought "hmm - that seems a bit bigger than the other one - might be worth poping to see the Doc" One of those idle thoughts.

It's always hard to know, as a bloke, whether it is your own ignorance about your own body. We just dont tend to feel around down there with any regularity. Yes, we're told to, but I struggle to maintain routine in lots of areas - going to the gym, creating quiet time to pray and read, making regular time to take my wife out, eating 5 portions of fruit and veg, and on the list of "must get round to" regularly feeling my nuts in the shower would never make the top ten.

I cant help being envious of women in that respect. Making a routine may be as much of a problem, but at least boobs are right there in front of you - and they arent, well, delicate (apart from certain times of the month). Whereas balls - as every schoolboy knows, too much pressure (such as the bully who "knees" you, or the unfortunate flight of your mate's football) and you feel decidedly queasy with an ache that you do not want to happen again. So any exploration that any of us guys remember to do will always be done gingerly, rather than thoroughly - even though we know that makes us substandard in the "checking yourself" department as we do not know the terrain like we should.

But for what it was worth I thought I might nip and see him, despite expecting an embarrassing "no that's perfectly normal - didnt you know men are that shape" comment.

The rest of the day unfolded as normal. Took my son to the footy (our team are hopeful of promotion this season and won comfortably)

By the evening I had found out some really bad news about a wider family member, and the rest of the weekend was taken up dealing with that situation, and the sadness about it.


Thanks for visiting the blog, by the way. Is it worth reading on? Well it depends what you're looking for. Let me tell you what this blog is about.

Last friday, I was in the shower when I noticed something. One of my balls was a bit bigger and firmer than the other. I went to my GP yesterday to get it checked out and have been referred to exclude, or treat, testicular cancer.

I decided I'd keep a blog of my experience as an (up to now) normal bloke going through this situation. I'm a 37 year old father of one nine year old son, married for 14 years; been a christian for 20 years and actively involved in a small friendly church in the sleepy small town where we now live.

There is a twist though. I work in a senior job in the NHS in England. In fact there's a good chance in a months time I will hold some responsibility for the long term development of Cancer services in this part of the world. So my first encounter is as a potential customer - rather like being a mystery shopper.

However, first and foremost I'm a person, facing a situation I had no idea would be upon me. So this is about a journey I find myself beginning, with no idea where it will end.

I'll try to post something most days.

Thanks for reading