Colonel Bogey

Day 213: 3 Month Checkup

2006-05-24T22:23:00.000+01:00

Wow – doesn’t time fly – it must be 3 months since I last wrote anything!

It’s a good sign I guess. It means that I am either not thinking about the whole cancer/ hospital episode, or I’m just too busy to write about it. Either way, it shows that I have moved on. I really have moved on. The whole episode it so far behind me, so far in the dim and distant past that it rarely enters my mind any more.

So what prompted me to write now? It was my recent quarterly checkup at the hospital. The checkups themselves are fine – this time a quick grope, an x-ray, and blood taken – but the days prior to the checkup were very tense.

I struggled to understand why I was having such a stressful and anxious few days, but then it dawned on me. The further into the past the cancer drifts and the more I have got on with my life, the more distressing it is thinking that I might still have the disease. (Yuck, ‘disease’, I think that’s the first time I’ve used that word!)

It’s summer, I have big plans, the kids are growing up. I want to see how my newly planted trees look in years from now. I want to see the kids grow up and get married. I want to save up for a swimming pool. I want to pay the mortgage off earty. Future future future. I love planning, future gazing, and what now makes me feel uncomfortable – very uncomfortable – is the thought that I might have no future.

It’s ridiculous, I know. I am almost certainly cured of cancer now, but there still is a chance (4% I think) that I could still be ‘contaminated’. (First time I’ve used that word too!) and it’s these quarterly checkups that remind me of this – of my mortality.

This anxiety only lasted a couple of days prior to, and after the checkup, and now I feel on top form and in good spirits again.

Some weeks ago I spoke to James Whale on the James Whale Radio Show. (I can’t remember now if I blogged this event). James has had cancer and has to go for regular checkups, and as we chatted live on air he told me that for several days before his hospital visits, he too feels ‘off’ and friends know to avoid him.

Just before I sign off, a quick thought for Karl. Karl is someone I know who has just had his testicular cancer results and sadly he has the stronger of the two varieties, including cancer cells found in his lungs. The cure rate of this type of cancer is equally high at over 90%, but the journey to success may be a longer and tougher journey that I had to cope with. Our thoughts and prayers are with him and his family.

TIM
XXX

Day 124: Post Radiotherapy Checkup

2006-02-24T22:30:00.000Z

Yesterday I had my post radiotherapy checkup.
I was a little apprehensive as I travelled in for my consultation - I just had no idea what to expect. Good news, bad news, any news at all?

The checkup was brief:
“Drop your trousers Mr Walton and jump up onto the bed” followed by a couple of minutes of gentle ‘investigation’. I’m quite used to this now. In fact I’m almost tempted to shuffle into the next consultation with my lower garments dropped to my ankles!

The news was brief:
“4 out of every 100 people will have a recurrence of the cancer. You will be checked at intervals for the next few years to see if this includes you. Here is a plan”

And so to the plan. I didn’t get to keep a copy of the plan, so this is from memory. For the first year I get checked every 3 months. This will be a combination of chest x-ray, blood test and CT scan. The second year is more of the same but only 6 monthly. In years 3 and 4 the tests are annual. Should anything crop up during the tests, it is not the end, it is just the start of another dose of treatment. Chemotherapy I guess.

After my consultation I had to give blood. I sat comfortably in the BUPA ‘blood-giving-chair’ with lovely shaped, padded arms in a private room. Now bearing in mind that I am 6ft tall, 15 ½ stone, recently experienced with surgical procedures and radiotherapy, yet the nurse still found the need to ask if I would prefer to lie down while I gave blood. “Lie down?” I quizzed, “how many pints do you need?”. I guess that’s BUPA for you!

TIMXXX

Day 119: Distant Memory

2006-02-19T21:13:00.000Z

I’ve now been back at work full time for over a week, and the memory of surgery and radiotherapy is now fading into the dim past.

The human memory is a peculiar thing. I can remember unwrapping presents on my 10th birthday with an uncanny clarity, yet the events of recent months now seem like a dream, like something that I’ve been told about but that didn’t really happen. I you were to ask me now to describe the feelings, emotions and physical effects of radiotherapy I would say that things were a bit uncomfortable but no big deal. Reading the blog back to myself though tells a different story!

So am I now cured of cancer?

I can’t answer that yet. I think I must be - but I’ve yet to have my post-treatment scans. In fact I’ve got an appointment this week with the consultant who will inform me of the next steps in the procedure. I’ll let you know what he says.

Is life really 100% back to normal?

Yes, 119 days in, and all is well. I mean really well.

TIM

Day 95: One week on…

2006-01-26T23:07:00.000Z

It’s been over a week now since my radiotherapy treatment ended, and on the whole it’s been a good week.

I stopped taking the anti-sickness tablets pretty quickly as I found they were making me really drowsy. Tiredness I can cope with, but feeling drowsy is like having your head permanently in a fog. So I opted for a clear head, even though I have to contend with almost constant queasiness.

The week has seen good days, and not so good days. The constant queasy feeling is reasonably annoying, and the tiredness comes on very quickly. But to be honest I don’t feel like an ill person, I feel like an uncomfortable person.

A strange thing… More than one person had reported that radiotherapy had make them, or someone they knew cross and aggressive. I thought this was a strange thing to happen and gave the idea no further thought - until this week. I have been finding that I am very short with people (sorry guys!) and my patience is at an all time low. I wouldn’t call it aggressive in anyway, just tired and, as they say around these parts, “a bit waspy”. I guess it’s nothing to do with the radiotherapy, and everything to do with being tired and out of routine.

The patience of those around me is not going unnoticed! Thank you.

TIM
XXX

Day 87: Pleasant Relief!

2006-01-18T13:34:00.000Z

I had a lie in today, and didn’t get up until 8:50am.

The sickness is still there, but it’s a different sickness. Something has changed. I feel kind of unwell but excited at the same time, it’s not easy to explain.

I guess it’s the joy of not having to go to hospital again - that, and the feeling of having successfully stuck it out to the end. A great weight has been lifted!

Feeling ill and knowing there’s more treatment to come really tests your mental attitude. Feeling ill but knowing that things will get better very rapidly is much easier in comparison.

In a very peculiar way I’m going to miss the daily hospital visits. It sounds a demented thing to say, but in 2 weeks I have built up quite a rapport with the hospital staff, the doctors and nurses, the receptionists, other patients too. I actually took a thank you card and some gifts for the nurses. They really have been wonderful. In the card I thanked them for making me feel so ill, in such a pleasant manner. I wonder if my feelings towards the nurses demonstrates “Stockholm Syndrome” that hostages often experience. It’s where for some reason you feel indebted to, and can even fall in love with the very person who has removed your freedom and liberty, and who is causing you pain and distress. The nurses were in no doubt causing me pain and distress, yet I had warm feelings towards them, and thanked them almost every day for looking after me so well!

Here’s an interesting quote about Stockholm Syndrome…

“According to the psychoanalytic view of the syndrome, the tendency might well be the result of employing the strategy demonstrated by newborn babies to form an emotional attachment to the nearest powerful adult in order to maximize the probability that this adult will enable - at the very least - the survival of the child, if not also prove to be a good parental figure.”

Stockholm Syndrome has never been applied to the doctor/patient relationship – a fact of which I’m very glad because, I’m not sure what this would say about me and my mental state! Maybe I’ll stick with the theory that the nurses were just very attractive and they all had warm hands. It’s easier on my brain.

Sometimes I wonder if I’m giving away just a little bit too much in this blog!

:-)

TIM
XXX

Day 85: “Sick of the Palsy”

2006-01-16T17:03:00.000Z

It’s an old joke I know, but I feel like the man who was sick of the palsy, and his companion turned to him and said “I’d be pretty sick of the palsy too, if I had to lie in bed all day”. I too am sick of being sick. If this treatment was a competition to see who could last the longest I would back out now. I feel defeated. What has happened to my endurance, my stamina? Two weeks of illness and I go to pieces!

Yes, today has turned out to be a day in bed. I feel sick, tired and restless. My usual strong, amiable and chirpy nature has been zapped. You would think there should be some solace in the fact that tomorrow is my last hospital session. I would have thought so too, but it’s not the case. Imagine having to eat 10 hardboiled eggs. Having eaten 9 doesn’t make eating the 10th any easier. The 10th is in fact the worst.

The tiredness is a strange tiredness. However much I sleep, the tiredness refuses to ease.

I’m beginning to see why they have encouraged me to have 2 weeks rest and recuperation after the treatment. I think I might actually need it!

On a more positive note, writing this blog really helps. It’s kind of therapeutic, it gets things off my chest, it helps me understand my feelings by having to write them down. I actually feel much better now than I did when I started writing 20 minutes ago.

Wish me luck with my 10th hardboiled egg tomorrow!

:-)

TIMXXX

Day 84: yyyaaaaawwwwwwwnnnnnn.

2006-01-15T13:29:00.000Z

Very, very tired.

Very, very frustrated.

When I rest on the sofa, I get bored and restless.

When I go out, I get tired and long for a sit down on the sofa!

I feel in pretty good spirits, I just need to get on top of this frustration a bit.

Some kind friend has sent me a page of puzzles to help pass the time. I’m a big fan of puzzles and might well spend an hour or two this afternoon performing mental gymnastics.

Another way I plan to pass the time is to research into exactly what is happening to my innards. I mean, what exactly is the radiotherapy doing to me? Why does it make me feel sick? Why does it make me feel tired? Why does it make me infertile? There are a lot of unanswered questions that hopefully an hour searching on the internet might resolve. If I find anything of note I’ll be sure to record it here.

BFN
TIM
XXX

Day 81: Very tired, but nearly there.

2006-01-12T20:50:00.000Z

It’s Friday tomorrow, and then I have the weekend free for rest and recuperation. Boy am I looking forward to that!

The week has gone well. Very little nausea. Happy, even busy mornings followed by tired afternoons and drowsy evenings.

In a peculiar way, eating cures my nausea. Even though I have no appetite at all, and the sight and smell of food has lost its allure, I find I can still push food down my neck and the result is decreased nausea, decreased tiredness and an overall improvement in wellbeing.

Another wonderful stomach settler has been ginger beer. Oh, and cake.

Foods I can’t stomach in any way are tea or any milky drink, and cheese. It’s not just a dairy issue though because yoghurts are fine.

I have actually eaten so much during my radiotherapy that I have gained weight! I can only guess that this is not typical.

That’ll do for tonight. Lots more I could report on, but I’m going to get back to my resting.

TIM
XXX

Day 79: Feeling great. Time for reflection.

2006-01-10T22:22:00.000Z

I like numbers. I like statistics. Here are a few numbers and statistics that make the current course look like a walk in the park…

I have now had 5 out of my 10 prescribed radiotherapy sessions.

I’m half way already!

I have now completed 2 of the current 5 consecutive daily sessions. Today being less than half way through (40%) makes the rest of the week loom ahead. Tomorrow, however, will be past the half way stage (60%) making the rest of the week retire to a simple ‘finishing off’ exercise. There really is some truth in the old adage “What a difference a day makes”.

I took the trouble last night to read through my blog from start to finish. It was a very rewarding experience. It is amazing that in just a few short weeks the memory can begin to play tricks on you. As I read all the entries in succession though, something did cause me to sit and ponder.

As I read the earlier posts I could recall writing some of them, sat with a blanket on my knee and a computer on an ‘invalid’ wheeled table. Oddly, I could recall other thoughts I had at the time but had decided not to record in the blog. I am often (but not always) aware of other people’s feelings and censoring my comments seemed like a reasonable thing to do at the time, for fear of offending.

The most recent blog entries on the other hand record my internal wrangling of censorship and honesty, the result of which was to endeavour to be brutally honest and uncensored as I record the trials and tribulations of dealing with cancer. And so I just want to cover at least one important item that should have been included almost from day one. It is in no way meant to offend, quite the opposite. The reason I have decided to backtrack and fill in this particular gap is because I think we can learn an important lesson from the episode.

When I was first diagnosed as having cancer, word soon spread around friends, family, school parents and work acquaintances. We were all frightened as the impact at that stage was a big unknown. Sympathy cards started arriving and the operation was booked and duly performed.

It was my first venture out when I began to notice other people’s strange behaviour. I thought it was my imagination at first, that people who would normally speak to me in the street would avoid eye contact and pretend they hadn’t seen me. I would see people looking at me out of the corner of their eye, and when I turned to them they would quickly look the other way. You read in works of fiction about friends crossing the road to avoid talking to you and I couldn’t believe it was really happening, but as sure as I’m sat here typing now, it is true. It really did happen. I wasn’t Tim any more. I was Tim With Cancer.

At first I wasn’t overly concerned. I mean, how do you approach somebody and say “I’m sorry to hear that you have a potentially terminal illness, and that you have had parts of your genitals surgically removed”. What if I burst in to tears? What if I replied that I only had 2 weeks left to live? I can honestly understand the difficulty of the situation. But inside something did upset me - not the way this was happening to me, but because I could see clearly how I have done this to my own friends. I have avoided making contact with ill or suffering people and at least one friend was terminally ill and died – and what did I do? I looked the other way.

As I considered this unexpected but quite understandable reaction of others, something else dawned on me. The first, the sincerest, the most dedicated callers, letter writers, well wisher and helpers had been those people I know who are currently suffering, or who have at sometime suffered from notably ill health or other distressing situations. They have no embarrassment talking about testicles, intimate hospital tests, cancer and mortality. They don’t turn away - because they have been there and understand.

I feel I have learned a great lesson. I wont dwell on the guilt of how I have turned away from others in the past, but I will take this lesson with me in the future, hopefully making me a better and more caring person. Jesus confounded his contemporaries by not turning his back on sinners, prostitutes and lepers, and now I begin to understand more clearly his compassion.

Back to my own ‘head turners’ - as soon as I made the effort to speak to them, or as soon as word spread that I was actually fine and in good spirits, or as soon as eye contact was forced, things went back to normal instantly. For them, as it was for me, it was the fear of the unknown.

Please understand that I didn’t recount this story to point a finger at anybody or to nurture guilt feelings. It was done for me, so that when I read back my blog from time to time I will be reminded to exercise my newly found compassion.

My theory that sufferers are more compassionate than most has been proved beyond doubt this last week. If you sit in a doctors waiting room with people suffering from coughs and colds, it is like a morgue. Nobody speaks, nobody sits near you. Yet sit in a waiting room in an Oncology wing where everybody has cancer of varying degrees, and there are smiles, good humour, happy chit-chat and banter. People talk openly about their operations and treatment, and ask with genuine interest how you are getting on.

God bless cancer sufferers. They are an inspiration to each other.

It’s late, I’m off to bed.
I’m on the machine at 8:50 tomorrow.

Tim
XXX

Day 77: Renewed Confidence

2006-01-08T21:38:00.000Z

I want to begin be stating the main reasons for keeping this blog.

The first reason is that as the days, weeks and months pass, it is easy for your memory to play tricks on you. We are all very aware that we remember things incorrectly. We go on holiday with people we have vowed never to holiday with again - we recommend films to our friends and grimace with embarrassment as what is seen is far poorer than we remembered – we picture our school days as sunny and fun, where we know full well that they were rainy and awful.  And so goal one of this blog is for me to be able to look back at some future point and recall exactly what I was feeling and going through at any particular time without the additional tint of rose spectacles. The blog in this way works much the same as a regular ‘common or garden’ diary I guess.
The second reason I keep this blog is for the perhaps self-important and pretentious reason that somebody somewhere, either now or in the future, might find it useful. Thinking particularly of people going through the same experience as myself.

So if the record of my experiences, joys and tribulations is potentially for the benefit of others, it could go one of two ways. The way I write could be an accurate record of events and feelings, however harsh, or alternatively it could be written to offer strength, comfort and support to any reader who may find themselves treading a similar path.

Up until Friday I had not really made any conscious effort to write in one style or another, I just record what’s in my head. On Friday though all this changed. Reading the blog back to myself today I realize that I have taken option one - that is to write accurately about my feelings giving no consideration to the support and comfort I could be giving others. I could have written that things weren’t too bad, that radiotherapy is uncomfortable but not intolerable, but rather than that I wrote down that it was almost the end of the world and I was close to backing out of the whole procedure!

This worried me at first, that I might unnecessarily worry others by my no-nonsense description of the effects of radiotherapy.

I’m not going to backtrack and change previous posts. What is written is written (unless there are any glaring spelling mistakes – I might correct them!) and I have now made a conscious decision to continue in this truthful and accurate way.  Not that anything previously written has been inaccurate in any way.

So if you are a fellow sufferer reading this blog, and you are looking for words of comfort and support, then I apologize to you. On the other hand if you are a fellow sufferer and you want to know the truth about what to expect on your journey to recovery, then read on - secure in the knowledge that what you read here is truthful, accurate and is given neat, not diluted and with no added sugar.

Now that we’ve cleared that up, I can begin to tell you how things went after Friday…

Well on Friday (as you know) I was ready to pack it all in. I was really very poorly.

But since then (it is now Sunday evening) things have improved tremendously. I have not been sick again, and even the tiredness has decreased. I still feel as though I have been punched hard in the stomach, and food still tastes strange and makes stomach churn, but hour by hour I feel better and better. In fact the prospect of 5 consecutive days of treatment doesn’t fill me with fear any more as I have a RENEWED CONFIDENCE! Bring it on! If I can recover this much in just 2 days then things really can’t be so bad.

I like to try hard to help myself. I don’t sit around feeling sorry for myself, I like to get on and do things.  I’ll jot down a few actions to help myself feel on top of things…

Getting up, getting washed and shaved and putting on some nice clothes. When you look in the mirror and see a scruffy rundown person, you feel rundown. When you look in the mirror and see a bright face, you feel much brighter.

Eating and drinking. I have totally lost my appetite, and food tastes strange, but I have forced myself to eat good healthy meals. I picture all the vitamins doing their bit towards winning the battle.

Ginger and lemon tea is nectar! I can’t drink tea at the moment. I don’t know why but it’s one of the things that really turns my stomach over. But ginger and lemon tea soothes and tastes wonderful.

Getting fresh air. I walked along by the river today. The fresh air, the scenery, the exercise, it works better then any drug.

Doing something to feel normal. We held a birthday party for my middle daughter on Saturday even though there was no way I was in the mood for it. As it happens it went well, and continuing with regular events rather than putting them off helps with feeling normal.

Oh, a quick note just before I go…
If you see me and I look rough, just lie. Tell me I look great, or better than you expected. Telling me I look ‘green’, or ‘terrible’ only has the effect of making me feel worse! You know who your are :-)
That’s all I’ve got to write tonight.
I’m off to hospital first thing tomorrow. Wish me luck and, don’t worry, I genuinely have renewed confidence today!

TIM
XXX

Day 75: Zapped Confidence

2006-01-06T19:27:00.000Z

I’ve now had 3 days of radiotherapy. They went something like this.

Day 1: A breeze.  A walk in the park.  Almost ‘fun’?!

Day 2:  Nearly as easy as day one, but just beginning to feel a bit strange.

Day 3:  Ouch, yuck and bleeuugghhh.  Can’t keep food down. Can’t keep liquids down. Really, really tired. I have never been so sick in all my life! I was convinced I was going to bring up my lungs and other vital organs as well as the contents of my stomach. (Apologies for the bluntness).

On the plus side, I have changed my anti-sickness medication which may work more successfully, and I now have the weekend ahead of me with no hospital visits at all. I am hoping and praying that I will recover enough before Monday to prevent the 5 day onslaught of treatment next week from nearly killing me.

The operation of administering radiotherapy is very quick and painless. I simply take my shirt off and lie on the bed of the machine. My alignment tattoos are inked over with a marker-pen and I am shunted and shifted (by two nurses) to align the marks with the laser lines coming from the walls and from the machine.
The nurses leave the room, the room goes dark and the machine zaps me from the front for about 10 seconds, and then rotates underneath me and zaps me from the back for another 10 seconds.  The lights come on, I put on my shirt and I’m off.

I am beginning to feel the sunburn effects on my skin, and a constant feeling that I have been punched in the stomach, and to be very honest, I am now very nervous of 5 consecutive days of treatment next week.  In fact, to be even more honest, part of me says “just don’t go”. It’s a very strange thing to purposefully put yourself through such things, especially as these things are essentially a preventative measure.

But it’s not all doom and gloom. There are many things that are keeping me positive…

Friends and family are being very helpful, giving lifts and helping around the house.

It’s not chemotherapy!

I have the weekend to recover before treatment recommences.

The new anti-sickness medication should work well.

The kids are wonderful and keep me busy.

2 weeks is a very short time. Many people have 6 weeks treatment.

The success rate of this treatment is around 98%.

My oldest daughter who is 8 years old wrote me the following poem. This will make you smile I guarantee it.

Get well soon.
Get well soon I really hope you do, but
If you don’t I will look after you.

I will give you all my wishes and love,
But most of all,
Get well soon.

I’ll end today’s blog on that note.

Oh, finally, I don’t feel as though I can pray for my own help through trials, so if any of you want to say a prayer for me and my family, it would be greatly appreciated.

God bless and good night,

TIM
XXX

Day 72: The last day of normality for a while!

2006-01-03T23:41:00.000Z

I didn’t have any compelling reason to sit and write a blog entry tonight, just the fact that tomorrow I start my radiotherapy I thought I should jot down my current feelings and state of mind.  So here goes…

The past few weeks have been eventful in a normal way. Christmas, work, building projects, the usual in just about every way.

My illness has been mentioned by just about no one, giving me an excellent opportunity to forget about it almost completely.  It is only in the last day or so that the impact of what is about to happen has sunk in.  I call it ‘impact’, but this is part of the puzzle, I don’t know what the impact of radiotherapy will be.  Imagine someone told you that tomorrow you were going to be in a car accident.  Would you worry frantically that it was going to be serious? Or would you picture in your mind a small prang at walking speed.  Well that’s just how I feel. Not sure how to feel.

Some people tell me that radiotherapy will be a walk in the park compared to chemotherapy.  Others tell me that radiotherapy will really knock me for six and I’ll spend a month in bed.

This might sound odd, but picture in your mind a big swingometer, a sort of big pointer that can swing from left to right and back again. Around the path that the end of the pointer will take are the numbers from 1 to 10, and above the swingometer is the word “Confidence”.

When I picture myself leaving hospital tomorrow I see a lively, confident fellow (yes, me) walking out with a beaming smile, laughing with the nurses, I guess just being me.

Swing CLUNK
The pointer is pointing at 10. Maximum confidence.

A few minutes later I can see myself lying in bed for a month, being sick, irritable and hugely depressed.

Swing CLUNK
The pointer has swung back to 1. Minimum confidence.

This feeling is soon displaced by thoughts of being at home everyday when the children come home from school, and having lunch everyday with my wife, and walking around the garden in the winter sunshine.

Swing CLUNK
The pointer is back at 10 again. Excellent.

Fortunately my swingometer spends 99% of it’s time pointing to 10, rarely at 1, and oddly never anywhere in between.

Oh, before I forget…
In my last post I said I would tell you about taste buds. Sorry for the delay. Here goes…

Since my operation my tastes have changed very slightly. I used to love Indian food, olives and icecream cones (not together). But recently none of these foods have excited me. In fact the smell of icecream cones makes me wretch, Indian food seems bland and textureless, and olives have definitely lost their appeal.

What has happened?

Is it just me getting older, or has losing a testicle, having anesthetic and being pumped with heavy doses of morphine slightly tipped my body’s balance?

Another clue…
I sometimes get migraines. My vision goes very distorted with flashing lights, and then it’s like having an axe plunged into the top of my head. The aftermath of a migraine is having a day in bed followed by a day where I can get around, but feel as though I’ve been hit be a bus.
But… since my operation I’ve had  a migraine without the pain!  A strange notion I know, but I had the distorted vision, the day of feeling like an RTA (Road Traffic Accident) victim, but with no head pain what-so-ever.

Do I still have morphine or anesthetic in my system? Has the operation moved by body’s delicate balance slightly? Are migraines and taste sensation related to testosterone and I now have less? Are migraines and taste sensation related to testosterone and I now have more due to over compensation?

I guess I’ll never know.

Hey it’s 11:30 and I’ve got an early start tomorrow. I’m off to bed.

I’ll let you know how my first session goes tomorrow.

The swingometer is registering a definite 10 tonight. It must be the therapy of writing things down!

Good night

TIM
XXX

Day 49: Tattoos and taste buds.

2005-12-11T22:30:00.000Z

It’s 24 days since I last wrote anything!
Although in fairness, it was supposed to be longer than that. But as I’ve had a recent hospital visit, I thought I would keep blogging as and when things happen.

It was during the week I went for my “planning meeting”. I had in mind that I would spend an hour or so with a very caring radiologist, discussing the proposed treatment, possible side-effects, the possibility of working during the treatment, driving, expectations and fears. But instead the conversation went something like this:

“Hi Mr Walton, has anyone told you what you are doing here today?”

“Some kind of planning I guess?”

“Today we are going to put small marks on your stomach to aide the radiotherapist. Here are your dates for radiotherapy. Any questions?”

“Um, no not really... Will I be sick?”

“Here is a leaflet of side effects. Any other questions?”

(Really thinking hard of a pertinent question now) “Can I get a carpark pass?”

“Yes. Go and see asdask fhdskjfs safdlkhh.” (You know what it’s like, you ask a question and then forget to listen for the answer)

“OK” I said, having no idea what she had just said.

I then had to strip to the waist and lie on a table that was too narrow to rest my arms on, while a huge machine-head moved and whirred and clicked, and I could see out of the corner of my eye green laser lines across my abdomen.

The room was dark. I was on my own. The green laser light was eerie, and I convinced myself that I was in an episode of a Marvel comic, being given super powers. (Childish I know, but it helped pass the time).

Sadly the only thing I was given was an interesting display of permanent marker pen, followed by around 6 or 8 small tattooed dots which will be with me for life.

I left the hospital clutching my sheet of dates for radiotherapy (which incidentally start from 4th January and last for 2 weeks), a leaflet of possible side-effects (which include Leukemia!) and a carpark pass (the nurse kindly repeated her instructions of how to get one of these most sought after tickets.)

At the risk of both making a fool of myself, and upsetting my wife, I am going to make note (again) that the nurse who attended me during this planning meeting was nothing short of gorgeous. Is it the uniform? Is it the nurse’s bedside manner? Is it the fact that I feel vulnerable in a hospital situation? Is it the power of life over death that nurses hold? Or rather more cynically is it simply the BUPA employment policy. Or rather more worryingly, am I turning into a lecherous old man! :-) What ever it is, God bless nurses. They do a great job looking after people like me!

So what about taste buds (reference the title of today’s blog). I’m going to write down something that might be wrong, or just plain stupid, but here goes anyway…

Actually it’s late. I’m off to bed. I’ll continue this perhaps tomorrow.

Good night.

Tim

Day 25: Not what I was expecting!

2005-11-17T22:14:00.000Z

Well, today I have been to see the next doctor in my chain of doctors/surgeons/specialists. For the purpose of this blog I will call him “Dr Owen” (seeing as that was his name).

I learned a few things today that I wasn’t quite expecting.

The first thing I learned was that of all the people who have a testicle removed, as many as 1 in 4 of them (us?) still have some kind of cancerous growth or cancerous cells in their (our?) lymph glands. 25%! I thought that was quite high.

Anyway, with Seminoma, the radiotherapy has a 98% success rate of curing these extra cancerous cells. I asked (of course) “what happens to the unlucky 2%, do they drop down dead?” to which Dr Owen replied that “no, they don’t drop down dead, but continue treatment with chemotherapy.”

I asked Dr Owen a further question…

Q: “When can I say that I am clear of this cancer?”
To which he replied…
A: “We will test you frequently over the next few years to see if anything develops. (CT scans, bloods test and the like). If after 2 years the cancer has remained away, then we will say that you are 95% clear. And after 3 incident free years, 98% clear.”

Q: “When will I be 100% clear?”
A: “After around 5 years.”

Back to the present time. I have to be tattooed! Four small permanent marks on my stomach. These are so the doctors/nurses who use the radiotherapy machine can align it accurately for each dose of radiation. Apparently the tattooed marks are very small and not really anything to show off to friends.

I was taken by surprise a further time when Dr Owen said that the radiotherapy only lasts for 2 weeks, not the 6 weeks that the surgeon had estimated. I politely said that I must have misheard the surgeon. But I hadn’t. And this therapy has a waiting list of around 6 weeks. (that rings a bell, maybe I had misheard after all!) so nothing now until first thing in the new year.

In some ways it would have been nice to get things sorted out straight away. In other ways it will be great to put off the treatment until after Christmas.

So for the next few weeks, it’s back to work, back to normality.

(Dr Owen checked my scar while I was with him. He said I have had a reaction to the stitches material, which is why the wound is taking so long to heal.)
I’m not sure when I will update the blog next. It may not be until after Christmas. So perhaps I can take this opportunity to sign off for a while, and thank everyone for their kind comments, visits, gifts, cards and prayers. And most importantly I would of course like to thank God for looking after me and my wonderful family. God bless Bonnie for putting up with me, she’s a real star!

This is Colonel Bogey signing off.
Until the new year.
God Bless
XXX
Tim

Day 22: Grumbles…

2005-11-14T14:56:00.000Z

Today, for the first time I’m going to have a little grumble…

My scar is playing me up a bit and keeps opening in different places.

I must be a bit run down, as I have an eye infection and a cold.

The prosthetic feels, erm, kind of strange. Almost in the wrong position.

That’s it. That’s all the grumbles I have. Not bad really.

Oh, and I’ve got a date for my next consultation which is this Thursday. It is this consultation that will determine my exact dose of radiation, the times and the venue.

I really want to get started on this radiotherapy. I want to get it started so I can get it finished and get back to normality sooner rather than later.

That’s all for today. A little grumble, and a minor update.

TIM
XXX

Day 18: Surgeon checkup and results

2005-11-10T22:12:00.000Z

Today was the big day! I met with my surgeon for ten minutes or so this afternoon. After the usual drop of the pants and physical checkup (which I now do without thinking and certainly without blushing any more!) we moved on to discussing the serious issue of my cancer treatment, where we are up to, and what happens next.

GOOD NEWS!
The type of cancer that was found was Seminoma, the weakest of the 2 common types of testicular cancer.

GOOD NEWS!
Seminoma doesn’t require chemotherapy, only radiotherapy (apparently the nicer of the 2 to cope with).

GOOD NEWS!
The cancer hasn’t spread anywhere else, it has been totally removed with the orchidectomy. (there’s a word for you to look up!)

So what happens next?

There is a slight chance that cancerous cells are still around, so they need to be ‘nuked’. This will be done by way of a 6 week course of radiotherapy. This needs to be confirmed by a consultant, but a 6 week course of daily visits to hospital is apparently par for the course now (according to the very knowledgeable surgeon).

Every weekday for 6 weeks! Wow, I wasn’t expecting that! I thought that perhaps a couple of visits would sort it. Oh, and I also get a CT scan every 6 months or so for the next 5 years.

The radiotherapy is cumulative. That is, it gets worse as the treatment progresses. Should be wiped out just in time for Christmas! Nice.

Goals

My only goal now is to get back to normality as fast as I can. I’ll try to fit work in around my hospital visits (I’ve still got bills to pay!), take the kids out, socialize, etc etc.

And not to be a burden (more than I already am!) that’s a goal too.

I don’t know when my treatment will start, but I’ll keep you posted.
BFN
TIM
XXX

Day 15: CT Scan – Possible good news!

2005-11-07T21:05:00.000Z

Today was the day of the CT scan. I’m still not sure what the C and T stand for, but I think it’s Computer something or other.

The scan reminded me of (or emphasized) some strange part of my nature. Up until now I have been incredibly confident, brave, even macho. Having part of my body tugged out through a hole in my stomach?… no bother. Having injections?.., a walk in the park. Giving blood?… bring it on.

But today I buckled. Today they beat me, and for a brief moment I felt vulnerable.

Today they used the phrase “you will feel a bit strange”.  You wouldn’t believe how stomach churning I find those words!

Pain – no worries.

Feeling strange – I really can’t abide it.

The strange feeling was going to be brought about by having a dye injected into my bloodstream, including some kind of chemical to make my blood vessels expand. This reaction in my body was going to make me feel strange, tingly and hot, starting from my head. Perhaps this was the problem, the fact that it was my head that would feel funny. Panic attacks, flu-like symptoms and migraines came to mind, but were soon dismissed. I’ve been there before!

The scan was over in no time, and I was greatly relieved to use the toilet after being full of 1 litre of some strange milky liquid that I had to imbibe 1 hour prior to the scan. Imagine milk-of-magnesia. Yes, a whole litre of it!

And now for the good news…

A large, hairy but comforting looking doctor came to see me and said, that at first glance the scans showed a clean bill of health. (This was followed by the usual disclaimer that the pictures must be checked in more detail, but that confidence was indeed high.) In the words of Ren and Stimpy, “happy, happy, joy, joy!”. This is the closest I have ever been to kissing another man on the cheek, beard or no beard!

And now for something complete different…

BUPA is a funny thing. My scan today was taking place in an NHS hospital, with NHS doctors and nurses, yet BUPA were paying for the treatment that could have equally been achieved for free.

So what difference did paying for treatment actually make?

The difference was simple, yet stark…

I was ushered away from the “standard” waiting room that resembled a bomb site, with bodies on beds, and squashed together on chairs, to a serene waiting room just down the corridor with very comfortable seats, pictures on the wall, a private toilet, and magazines like “House in the Country” and “Horse and Hound”.

That’s it. Today at least, that was the only difference. I could wait in comfort, leaving the poor people to fight over the only grubby copy of “Take a Break”. To be honest I hate it. I hate being treated as privileged because of financial status (and not even mine, it’s BUPA’s money!)  I hate being treated differently for any reason.

My reading of the bible encourages me to lead a humble life, always putting others first. I guess at the moment though my self-preservation instinct allows me to clamber over everyone to make sure I get fixed first.

In my defense, it’s work that pays for my BUPA cover. I guess they want me back and earning money ASAP!

Next stop, a consultation with the surgeon on Thursday.
Will keep you posted.
Over and out,
TIM
XXX

Day 13: Kaleidoscope

2005-11-05T10:07:00.000Z

The human mind is a tricky thing to understand at the best of times, and emotion is equally complex, particularly during one of life’s challenges.

I find myself feeling well and ‘normal’ for around 90% of the time. The other 10% is split roughly as follows:

5% worrying about the illness…

5% in a strange, heightened state of happiness…

(A pie chart would be nice at this point, but you’ll have to imagine your own. Perhaps the 90% slice of normality would be white, the 5% slice of worry would be blue, and the remaining 5% slice of joy would be yellow.)

Worry
These are some of the things that cause me to worry. Please remember that this is for only a very small percentage of my day, so don’t imagine I’m turning into a manic-depressive just yet!

I still have no results from the tests on the removed tumor. Surely such a delay can only indicate bad news! This is a ridiculous and unfounded worry, as the delay might equally mean good news as the more serious cases are being treated first! Ridiculous and unfounded it may be, but my mind still worries about this occasionally.

“95% of all cases of testicular cancer are fully cured!” Why does this statement make me worry, surely it should fill me with confidence? It should. But my mind reminds me that 5 out of every 100 cases end in… well they just end. What compounds this problem is the number of people who tell me about a friend or relative who has survived the illness. In a bid to raise my spirits, they are simply increasing my odds of being in the unfortunate 5%! Writing this worry down makes it sound ridiculous. In fact I’m almost embarrassed. The whole point of the blog though is to record feelings, emotions and activities as they happen embarrassing or otherwise.

Being told I have a limited time left is perhaps my biggest worry. I close my eyes and imagine myself at my consultation next week, and the doctor is telling me that things are terrible and I only have x number of years left. What would I do? How would I take it? What would I do for those remaining years?Now I’ve written that down I really do feel embarrassed! But it does cross my mind sometimes, so here it is recorded.

Joy
A very strange thing has happened. As if to counteract the occasional worries, I appear to have periods of great joy. It makes me feel at ease with everything, very excited, bursting with energy and raring to go.

Why does this happen? Where do these feelings come from?

Is it an equal and opposite reaction to the worries?

Is it due to having time off work and spending time with the family?

Could it be the pleasure of hearing from so many friends and family?

Perhaps it’s the happiness a newborn baby brings to a family!

It could be all of the above. It could be some kind of divine intervention (I can’t believe how many people have said they are praying for me!) Maybe, and slightly more disturbingly, it could be because I am in some way the centre of attention at the moment. Whatever the cause, the effect is marvelous and very welcome.

I’m now worried that I’ve exaggerated the 10% of my time. Please remember that 90% of my time is regular, mundane, run of the mill. Washing up, doing homework with the kids, eating, working and playing on the computer! For 90% of my day, it’s as if nothing has happened.

Normality is a great thing. Don’t knock it!

TIM
XXX

Day 11: No news yet.

2005-11-03T10:13:00.000Z

I have an appointment for a full body CT scan on Monday though, so wheels are still in motion.

Perhaps during this lull in activity I can take the opportunity to thank all the people who have written, sent cards, presents, emails, text messages, offers of help and encouragement.

I’ve had cards from new friends, old friends, people who I haven’t seen for many years, and people who I have never met! I have had communication from abroad, from the church I attend, from “up north” and from work colleagues. People have visited and telephoned, looked after the children and cooked us meals.

I’m not sure what our postman thinks. We’re still receiving new baby cards, birthday cards, and now “get well soon” cards and some have sent all three! Of course, every single one is appreciated.

I would like to thank you all individually.
But I’m a man.
So I probably wont.
But if I don’t thank you personally, it doesn’t mean you’re not appreciated!

If you want to phone or visit that really is fine. I know that getting in touch with someone who is ill is awkward. Are they in bed? Are they fed up of answering the phone every 2 minutes? Would they prefer to be resting? What should I say? What if it’s too emotional?

Well to put your mind at rest, if you do phone or visit you will see that nothing has changed.

You will ask if I am OK…
I will say “yes, fine thank you.”

You will ask if there is anything you can do…
I will say “thank you, but we’re fine at the moment.”

Pleasantries over, we will then talk about work, women, gossip, computers, other people’s children, the latest TV sensation and the weather. You will feel great because it wasn’t as bad as you were expecting, and I will feel great because you’ve managed to take my mind off things.

Can’t believe it, I’ve waffled again. Sorry about that.

Tim
XXX

Day 9 – God, suffering and coincidences…

2005-11-01T10:20:00.000Z

Having some spare time on my hands at the moment I’ve time to reflect on some quite deep issues, as indicated by the title of this post.

Suffering (I use the word kind of out of context here, as to be honest, I have no suffering what-so-ever at the moment. I’m actually feeling mighty fine!) can cause religious people to lose their faith, and conversely non-believers can feel great comfort by nurturing a faith in God and an after-life.

What about me? Well I have always believed in God, in an all-powerful creator. I just need to look at nature around me, at the birth of my children. It’s a no brainer, of course there is a God.

Q: So if there is a God, why does he allow suffering, especially (some might say) of those good, God fearing people?

A: Time and chance, and illness and cancer, and bereavement and hardship happen almost randomly to all people. These things do not discriminate. Now imagine that God protected his believers and saved them from all suffering. Surely all people would then become believers overnight, and our goodness will have been judged and rewarded in this life. “Believe in me and you wont get cancer” is a ridiculous notion.

Q: So why do religious people pray when they are in difficulties, if God can’t/wont help them out?

A: I pray. Not a lot but I do pray. Not that I never get ill, but that if I do get ill that I (and my family) might be given the strength to cope with whatever life throws our way.

Q: Does it work, do I actually get the extra strength I ask for?

A: Yes, undoubtedly. During this illness so far I have had an unprecedented calmness. Even on the trolley going into surgery I didn’t even have butterflies, and this from a typically very squeamish and “sick at the sight of blood” kind of person.

Q: Yes, but could this be a placebo kind of effect, where believing in anything would have the same effect?

A: Yes I would agree with this statement. A strong belief in something, even if it didn’t exist could have the same effect on the mind. But the ability to cope and the calmness I achieve from my belief in God is only part of it. I also find my life full of strange coincidences. Coincidences? Possibly. Guidance and help? Almost certainly.

Let me give you some examples:

Coincidence 1:

I am a very squeamish person and can’t bear to watch hospital dramas, operations or anything of that nature. Yet for several weeks before I found out about my illness I forced myself to watch the “Trauma” series on the TV. When asked why I was watching this I replied that I had a need to acclimatize myself with such things. I needed to be able to be strong if ever a serious medical issue arose. I couldn’t quite believe it myself but I had an overwhelming compulsion to do this.

And it worked. Each week the “Trauma” program was easier to watch. I was beginning to feel more at ease with operations and the like. I was feeling prepared for something big to happen.

Coincidence 2:

Apart from the fear of blood and all things medical, my other related fear was that of anesthetic. I (and many others) have a fear that during an operation the anesthetic will not work properly and we will feel all the pain, but be paralyzed and not be able to let the surgeon know. The other fear is that we die during the operation and never wake up again. In fact I have always pictured myself being dragged into theatre kicking and screaming in a shear state of panic!

Yet just one week before I found out anything about my illness, I found a program on Radio 4 that I was again compelled to listen to from start to finish (a rare thing with any Radio 4 program)! And this program was totally about anesthetic, anesthetists and operations. The program went into quite some detail explaining the procedures, the gases/drugs used and patient’s common fears.

By the end of the program I was totally at ease with all aspects of anesthetics and the procedures of an operation.

So was it just coincidence that I was compelled to watch and listen to these programs? It was so incredibly out of character. Was it just coincidence that this happed literally days before I found I had a serious illness? And was it just coincidence that the things I had learned, and the way I had acclimatized myself brought on a warm, comfortable relaxed state in hospital?

Those of you who share my belief in God will perhaps smile and agree that yes, praying for something to be taken away or prevented may never happen, but praying for strength can really help. You may have experienced similar things in your own lives.

Those of you reading this who don’t share my belief in God will say perhaps that what has happened over the last few weeks would have happened anyway. I am very happy for you to believe this and of course you may well be right! But this is not an isolated case. There are many other incidents in my life where I feel that guidance and help has been given. Maybe one day I’ll write about them too!

Sorry for writing so much, I hope it didn’t bore you!

Results expected today, I’ll keep you posted.

BFN

TIM
XXX

morphine - a medical opinion

2005-10-30T09:39:00.000Z

As you may have read in a previous post, I had a bad time with morphine. I told this story (complete with the embelishments that we all add to stories when we re-tell them) to a nurse friend. Her response helped me understand what happened to me...

Apparently too much morphine surpresses your lungs automatic and natural desire to breath. We all breath without thinking about it, and it's this automation that morphine can stop working.

This explains the panic and weird drowning feeling I had, and the feeling that the innards of my chest were about to implode.

It also explains why the oxygen mask soon helped me recover, as oxygen has the opposite effect and actually encourages the automatic breathing reflex.

So there you are, straight from the nurses mouth. Don't OD on morphine if you can at all avoid it!

This page http://www.drugs.com/morphine.html seems to confirm this conclusion. The bit about small pupils indicating an overdose is interesting, because even 12 hours later the surgeon commented on my small pupils with a typical doctor's concerned frown!

Day 7 - mixed feelings

2005-10-30T09:24:00.000Z

I thought I would number the entries as days since diagnosis, making today day 7.

I actually feel great. Most of the time.
The surgery is healing up nicely.
The prosthetic is settling down OK.

The are 2 things that stop me feeling really great...

1.Boredom.
We all dream of having a week or 2 to do absolutely nothing, but when it happens it's not that fantastic. Day-time TV makes me feel peculiar and I just can't watch it. Puzzle books are losing their usual charm, and the joy of computer games is also wearing thin!

2.That sinking feeling.
I feel so fine most of the time, that when it suddenly comes to mind that I haven't had the biopsy results yet and that chemo/radio therapy is just around the corner, that the sinking feeling in my stomach comes as a real shock.
I feel the colour drain from my face and a sick feeling in my stomach as these thoughts set in. Fortunately they only last for a short time and are soon out-weighed by positive thoughts

3.(I know, there were only supposed to be 2, but I've just been reminded of a third).
Sneezing and coughing.
Sounds very minor, but it's the only thing that still hurts a lot!

Approx 2 days now to results! I'll keep you posted...

TIM
XXX

the day after

2005-10-27T22:04:00.000+01:00

I'm at home now after one night in hospital, minus my left testicle.
Well to be fair I still have a left testicle, it's just that it's now made of silicon and appears to be considerably smaller that the one I went in with!!!

Some things I've learned so far...

1. I am a very calm person. I had no fear or trembling when going into surgery, in fact I quite enjoyed this new experience.

2. I am allergic/sensitive to morphine which made me think I was about to die after being injected with 2 syringes full of the stuff.

3. BUPA nurses are all very beautiful.

4. Surgery is easy. It's the recovery afterwards that's a bit tricky and for a few hours you tend to walk like a new born deer on ice.

I feel a bit like an old man today. I have to sit down very slowly, I can't bend down, and I have a blanket on my knees.

I thought I would feel great now the cancerous growth has been taken away, but I'm actually feeling more nervous about the impending biopsy and chemo/radio therapy, in fact the fear of cancer is now greater since the operation than before. Maybe it's the drugs. Maybe it's because the all-telling biopsy and scan are now so much closer.

I did a crossword last night while OD'd on morphine. The answers are all correct but the writing looks like the pictures of spiders webs when they inflict spiders with caffeine and acid. I might keep it, or scan it in for the blog.

That'll do for now...

TIM
XXX

the night before

2005-10-25T23:00:00.000+01:00

Not sure how to put this. I'll just be blunt. I've got cancer.

Tomorrow afternoon I'm having my left testicle removed. I'm reasonably calm about this, in fact what is playing on my mind the most is whether or not to have a prosthetic replacement?

I spoke to Mike today. He had a similar operation a couple of years ago. He kind of worried me in a way, he said that the op is really easy, but the radiotherapy is a bit grim.

Radiotherapy???? What???? Nobody has mentioned that one yet. I thought a half hour operation and all would be well. I don't know the difference between radiotherapy and chemotherapy. I've no idea how long I'll have off work. I know very little at the moment.

I'ts my first operation.

I think perhaps I'm about to start on a bit of a journey. I'll keep you posted as I progress on this new and peculiar path. Follow me if you like. I'll try to be witty and as honest as I can be, (bearing in mind that friends and family might be reading this!)

Good night
TIM
XXX

PS There's a prize if you can guess where the name of the blog comes from!