It Started When ?

They won’t tell you when it started or what caused it so I can only speculate as to when my cancer started. In May 2005 I went to my GP complaining of a cough and chest infection. They listened to my chest and declared my lungs clear and diagnosed bronchitis for which I was prescribed antibiotics. My chest appeared to get better and we went on what should have been an excellent three generation family holiday to Lanzarote in June.

The bronchoscopy took place on the following Monday. I was shown to my own trolly/bed and a doctor came to see me. He had my scan and whilst he is explaining about the fluid around the lung, I managed to get a good look and I could see a lump about the size of my fist just inside my right lung. The doctor explains the procedure to me and I wait.

A Bronchoscopy is an unpleasant procedure when a TV camera is passed down your tubes, or at least that’s what it feels like. It’s actually a small tube which goes up the nose and down the back of the throat and then into the bronchia and lung. They give you one of those injections where you remain conscious throughout the procedure but you don’t give a ****. Not only can they see the offending tumour but they can also take a sample. Whilst I was ‘under’ they drained the fluid from around the lung and I felt much better very quickly. I was left to come round from the drugs for a little while and then given some of the best tea and toast I’ve ever had, before being sent home.

More Diagnosis.

Some days later we are back at the hospital to see the doctor and get the definitive diagnosis. I have come to accept that in such consultations there is always a nurse or assistant present. I guess this is in case we, (the patients), completely loose it and start attacking the doctor. We are told that I have ‘Small Cell Lung Cancer’, (Like this should mean something to me), and that this variety is known to respond to chemotherapy. ‘So that is good news isn’t it?’. Well not judging by the expressions on the faces of the doctor and the nurse.

Perhaps they didn’t understand that, in my mind, my best case was a massive operation to remove a lung, or worst case was dying horribly and soon. So ‘It is known to respond to chemotherapy’ is almost as good as ‘Sorry there’s been a mistake, you don’t have cancer at all’.

So far all the diagnostic work had been carried out a Kettering General. They do not have an Oncology Department so I am referred to Northampton General which is the nearest centre of excellence. In many ways this is the worst part of the whole sequence of events as it takes a little while to get into the program. Knowing your situation, and that there is treatment available but not being able to start the treatment while that little bastard inside you is growing is frustrating and scary.

In retrospect it was only around four weeks between going to see my GP and receiving my first chemo and that’s not bad at all, but cancer changes your perspective on everything including the passage of time and I reckon that was the longest month of my life.

Helping Hand.

Somewhere along the line a visit from a Macmillan Nurse was arranged to our home. I don’t know what I expected from Macmillan, perhaps something a little clinical to go along with the title. What she did do was to advise us of what we could and could not claim and filled in all the forms so I could get my blue badge, and claim incapacity benefit. We were also given contact numbers and the cancer BACUP website address. (www.cancerbacup.org.uk)

Pre-Treatment.

Now you may not think having cancer is terribly healthy but you do have to be in reasonable health to undergo the treatment, (apart from the horrible little alien growing inside you). There are certain tests they carry out prior to treatment such as blood tests, full blood count, coagulants, etc. but my special favourite is the 24 hour urine sample collection. Have you any idea how much urine you produce in 24 hours? In my case just under 5 litres. Considering that they gave me a 5 litre container I must have done really well. You have to carry this damned container everywhere you go, (Or are likely to want to go), for 24 hours!

OK so with my container discreetly stowed in a see thru carrier bag I make my way through the gathered throng of the Oncology Department and hand it to the nurse who looks as impressed as I would be if someone had just given me a gallon of wee. They draw yet more blood and I am told to return on Friday for my first treatment.

Chemotherapy

My chemo is to be Carboplatin and Etoposide intravenously on the Friday, and then Etoposide in capsual form on the Saturday and Sunday then, three weeks later do it all again. Chemotherapy drugs are pretty nasty things and because of this you are also given a number of other drugs to help control the side effects of the treatment; Anti Nausea tabs, steroids, etc.

The Chemotherapy Suite in Northampton’s Oncology Department is not much like a hospital ward. It is more like a large lounge. The staff are caring, efficient and friendly and the atmosphere is more like a rather restrained cocktail party, where the cocktails are made from some of the most noxious substances known to pharmacy. There are a couple of beds for the more severe cases but the majority of us just sit in comfortable armchairs and watch the TV or listen to the radio or read whilst taking on board our ‘drug soup’. The Ashes Series was on during my initial treatment so I wasn’t short of something to occupy my mind.

I didn’t know before commencing this treatment just how many, and various, were chemotherapy treatments, (I suppose almost as many as there are types of cancer). Some patients would be in and out in 15 minutes or so, just having a single injection, whereas others, myself included, would be there for up to four hours, taking on board what appeared to be gallons of fluid. This raised two issues, firstly taking on this much fluid, plus cups of tea, water, orange, etc. is going to place a load on your bladder. I seemed to spend most of my time pushing my drip stand round the corridor to the loo. The second issue was having had a lifelong fear of needles the prospect of spending four hours with one stuck in my arm did not hold much appeal. Thanks to the kindness and understanding not to mention skill of the nursing staff, this is a fear I have overcome, (I still can’t watch a needle going in, but at least I don’t have nightmares before having a blood test anymore).

We are warned about side effects of chemo and also told that not everybody will experience them all and that everyone is different. My brother had been treated for lymphoma and had warned me that I could expect to loose weight at the beginning of a cycle but should regain it at the end of the cycle, thus maintaining body weight. Therefore I started a regime of eating what I fancied, when I fancied it, and lots of it, expecting that the nausea caused by the chemo would balance out any over indulgence. In the event nausea wasn’t an issue for me, (I know it was for others as there were often those little cardboard bowls being discretely moved around the suite). The net result of this was over the next three months I actually put on a stone and a half. A fact everyone took to be a positive indicator.

I found that within a typical cycle the first three days would be fine, as most side effects are handled by other drugs, then my energy levels would steadily decline till the following Friday or Saturday, (7 or 8 days), when I would be at my lowest but then steadily recover over the next 10 – 14 days. A blood test would then be taken at the end of each cycle to ensure that your blood cells had recovered sufficiently to sustain another chemical barrage.

The thing with energy loss is not that you feel your energy levels are reduced, rather you don’t feel that bad, but once you start doing something you can run out of energy PDQ. I found that if I listened, my body would tell me what I could and could not do. In fact I rebuilt and redecorated our utility room whilst on chemo but some days I only worked fifteen minutes and others six or more hours.

Self Help

Having spent sometime as a sports coach I know that a major factor in facing a seemingly overwhelming opponent is to demystify the strength of that opponent in your own mind. We have all come across this technique where you may be told to imagine the members of your interview panel on the toilet or something similar. Your cancer is no different; formidable, maybe, scary, certainly, all powerful, no!

Here are my rules.

Hats and Hair.

Just before embarking on chemo, in anticipation that I may suffer some hair loss, I had my hair cut very short indeed. A severe crew cut you might have called it. Some time during the second cycle I noticed that patches of hair were preferring to rest on my pillow rather than my head. My response was to shave all of it off. This was for two reasons, firstly to make it my decision rather than something my cancer had done to me, and secondly a bald pate is definitely more stylish than a patchy one.

Incidentally it wasn’t just the hair on my head that fell out. No body warned me about this. There are some places where bald is better, but, without going into too much detail, it can chafe a bit when it grows back!

As an aside to that I now posses a variety of hats, not just baseball caps. And I can change my look from a Biker, (Bandana), to a Thespian, (Felt Trilby), with a change of headgear, it’s fantastic and even when my hair comes back I intend to keep wearing the hats.

Guys, hats and hair! Bald is cool at the moment, a bit cold some times, but infinitely preferable to a ‘syrup’ that looks like it was hand knitted by an arthritic granny. They make some nice one’s for the ladies but guys it should look like hair, not a brillo pad!

Review

Because of the position of my tumour at the very entrance to my right lung, the passage was effectively blocked and I was moving no air in or out of the lung. As a result even a modest reduction in the size of the tumour resulted in a vast improvement of my condition. So it was that I was fairly confident the therapy was working prior to my next scan at the end of the second cycle of chemo.

I had a review meeting with the consultant at the end of the second cycle. I was examined and told that I was doing well. I remained unconvinced, however, for two reasons, first the scan had not arrived from Kettering to Northampton and second my blood count was not high enough to start the next cycle of chemo. For some reason I was really ‘gutted’ by the blood count thing. I would have to wait a whole week before another cycle could start and it felt like a major set back. Later that day the doctor phoned me at home to tell me that they had tracked down the scan and it was a ‘fantastic result’. We know that oncology specialists are not known for over optimism so no matter how un-quantifiable ‘fantastic result’ may be I took that to be a positive indicator. I also thought it was a nice touch that the doctor thought to phone me with the news rather than waiting for my next appointment.

Side Effects.

Some of the side effects from chemo are quite bizarre. If you read all the bumf there is just about everything that can occur is in there. Naturally after reading the first few depressing lines you give up and trust that the benefits, (Not Dying), outweigh the risks, (Dying). One effect which I found extremely irritating was a temporary change in my vision as if I was looking at a computer monitor where each alternate pixel was bright yellow. My eyes became very light sensitive and I ended up wearing sunglasses to watch television. As I say it was only temporary and thankfully quite brief.

A second unexpected side effect I can only describe as temporary nerve disruption. I found this quite amusing as I would be sitting watching TV and my arm would go numb and start floating off toward the ceiling, or I would be standing and away would go a wayward limb. All very temporary but most bizarre. The incident that stands out in my mind was when I was walking round B&Q in search of kitchen work top when an arm and a leg decided to take some time off and left me dragging them round the aisles like quasimodo. I managed to prop myself nonchalantly against a display of cupboards for a few minutes while my errant limbs came back under control.

End of Chemo.

With some very careful planning into my cycle, and accompanying, blood tests I managed to get scheduled in for Flu and Pneumonia immunisations. Timing is absolutely critical or otherwise my count won’t be high enough to produce antibodies or the chemo could kill them off indiscriminately, either way getting Flu or Pneumonia at this stage in the treatment could be critical, so my practise nurse pops some medication in the fridge for me and at the appropriate hour, I’m whipped in a side door, stabbed in both arms, and whipped out again before anyone in the doctors surgery can infect me with anything. What an operation!

Two more cycles of chemo distinguished only by the fact that each cycle brings you slightly lower that the previous and by the fourth I was ‘Knackered’. Again they had been delayed by the need to have blood in my veins but after the fourth I had another scan. I had expected to have six full cycles of chemo but the result of the scan caused a variation to the plan. The consultant informed me that the tumour had been reduced by 80% and that there would be no more chemo, instead I would receive radiotherapy to finish the little bugger off, (My words not his).

Planning

The application of radiotherapy is a very precise business. Whilst certain groups of cells are persona non grata so to speak others are really quite important in day to day living. There is a whole procedure to go through to ensure that every time the patient lays on the machine he/she is in the same position so that only the bad guys get zapped. They have a whole planning suite where you can be laid out and x rayed and drawn on until they are sure they’ve got it right, and then you get tattooed. In my case this is three dots, one under each arm and another in the middle of my chest, which mark my centre line. Apart from the fact that my arms are above my head for quite a long time and this becomes uncomfortable, there is nothing much to this procedure. Until…………….

‘OK that’s done, now we’d like to measure your head’,
‘EXCUSE ME!’

I hastily call a ‘time out’ and ask to see the consultant. I query why they want to be frying my brain when I have lung cancer. He explains that there is a 30% chance of my developing a secondary tumour in my brain, and a low dose fry up at this stage is found to reduce that risk significantly. (Some days just get better and better). OK so I let them tape my head to the table and x ray my brain.

The next stage is more planning. I now have to go through another CT scanner but this time in the precise treatment position as determined by my tattoos. This is quite complicated as my arms have to be above my head but the dye won’t flow down my veins whilst in this position. I will have to have the injection in my hand, (Arrrggggghhhh), and quickly get in position for the scan. The scanner jerks and clanks asthmatically through its task and once again I’m dismissed.

I get a call saying the doctor is not happy with my treatment and would I come in to oncology. The voice couldn’t discuss what was ‘Wrong’ with me but and appointment was made. In the event he/they wanted to add a little more ‘lead to the field’ to protect body parts that did not requiring cooking. I would like to suggest that perhaps better words could have been chosen when asking me to come in, you are still very worried at this stage and things like this can be interpreted badly.

Radiotherapy.

There are some very poor jokes about radiotherapy such as ‘How is listening to Terry Wogan going to Help?’. I didn’t realise just what a poor joke this was. The radiotherapy suite has radio 2 piped in all day long, so if your appointments are early morning you could well find yourself listening to that gerbil like bonhomie for hours on end. A horrible prospect you will agree, and we’d all started along the road to recovery……..

When I finally turn up for my first treatment I am greeted by a very full waiting room and a sign saying that they were running approximately 1 hour behind. (I came here every week day for five weeks and that sign never changed). I reported to the staff and was asked to take a seat. Shortly after, I was called through to a small office where I was interviewed by a nurse who is absolutely beautiful and much younger than my own children. (In fact when she pulled on a navy blue cardigan I thought it was part of her school uniform). Anyway the radiotherapy procedure was explained and my informed consent form checked, and adjusted. (I hadn’t signed to have my brain done, I know, that’s because they kind of snuck that in there hoping I wouldn’t notice).

I eventually make it into the treatment room and laid out like a slab of meat, but first they have to take one more X-ray to check the position of the lead and the tumour and my insides. Once this is done I can finally get zapped. After all the fuss it’s over in minutes. About 20 seconds from the front another 20 seconds from the back and then, for the first five treatments only, 15 seconds a side to the brain.

There is no sensation whatsoever with the chest treatment, but with the brain I could detect a peculiar smell during treatment, I am told it is ozone, and not uncommon. It disappeared as soon as the treatment stopped. Once or twice I also experienced some flashing in my eyes, (I guess this was something to do with the optic nerve as there was some kind of shield near my eyes.

The appointment system is somewhat fluid. Of course everyone wants either end of the day, avoiding rush hour, so that spouses can still do a days work whilst accompanying patients for treatment. Patients are always joining the clinic and others are leaving. Add to this to the fact that the installation is aging, (I didn’t think it was that dilapidated, but the staff tell me it treats up to fifty patients a day and has been open for more than twelve years, That’s about 200,000 treatments), and is prone to break down, Causing huge delays. Sometimes we can be treated on one of the other linear accelerators, other times we must just wait. So it is that one day’s appointment can be 16:20 hours, you’ll arrive and be treated straight away, and the next your 9:00 appointment can be delayed for an hour and a half.

The waiting room is stoic, in the whole 5 week treatment period I only ever heard two people complain, and neither of them was a patient.

New Regime.

After the first week my regime is changed, no more zapping of the bonce, but more, bigger, better, stronger, more focused, Irradiation of my chest. I now get two zaps from on top and two zaps from the back. Again there are no perceptible sensations at the time of treatment. But as time progresses some changes begin to occur. Occasionally I will move in a particular way and feel a sensation as if part of my chest had been burned, which of course is just what has happened. Don’t be alarmed this is not what I would call pain, (and I’m a wimp), but an odd sensation which occurs rarely.

I’m rather disappointed that my hair, which had begun to grow back, and look quite distinguished, once again fell out. To me the recovery of my hair was symbolic of my triumph over cancer, so I was understandably disappointed by its’ disappearance again. (As I write this in early January 2006, there is evidence that my hair is returning, but darker than before. We must wait and see).

There is an atmosphere of camaraderie in the waiting room, we are all engaged in a battle for our lives, we are all probably apprehensive and still scared of cancer returning but nearly everyone you meet has a smile, a pleasant word or a joke or anecdote for you. I cannot praise the staff highly enough either. They are always helpful, sympathetic, efficient and quick with a joke even though they are under a never ending pressure to treat more and more patients, whilst the machinery doesn’t always co-operate, (Bravo).

There are any number of bad jokes about radiotherapy. Most have to do with cooking analogies, such as ‘What gas mark am I on?’, ‘I’m I medium rare yet?’, ‘Anyone got some onions to go with this bar-b-que?’ then there are the nuclear one’s such as ‘I Think I’ve started to glow in the dark’. My favourite, (Because it was mine), ‘Last night I sneezed and changed channel on the TV’.

Side Effects.

At the start of my fourth week the side effects began to kick in. Because of the position of my tumour, just about in the centre of my chest, other organs were being affected. Not as severely as the main site but, the heart, oesophagus, and stomach are all around that area. Having complained of not feeling well I am seen almost immediately buy a doctor from the oncology ward, and given an ECG to check the function of the heart. I am diagnosed with Pericarditis, (Inflammation of the Pericardium, The membrane which surrounds the heart), and prescribed enough anti inflammatory, stomach protecting, painkilling drugs to last beyond the end of my treatment. The treatment calms down my symptoms and we start to look forward to Christmas.

My wife, bless her, has taken as much time off work as she can to be with me, so now I must go for the last week or so of treatment on my own. Because my treatment started on a Tuesday I will end up one treatment short on the Friday before Christmas. On my next visit I am given the news that on the Tuesday of that week I will get a double whammy. Two treatments, one at 08:10 in the morning and then again at 16:00 in the afternoon.

End of Treatment.

I have to admit that by this time I am an emotional wreck. Triumphing over cancer should be a joyous occasion, but my energy levels are so low I’m finding it hard to cheerful let alone joyful, and I reckon the double whammy will just about finish me off. So I take a leaf out of my wife’s book and try some retail therapy. On the Monday I withdrew an undisclosed some of money and went round the shops of Wellingborough buying presents for all and sundry until it was all gone. And yes it did make me feel better. (It was good to think about someone else for a little while, rather than how good or bad I was today, which of course is what everyone you know asks you).

In the end the last week was rather an anticlimax, I did my best not to burst into floods of girly tears as I said my thank you’s to the radiographers, students and nurses. There was a little bit of air punching as I left the waiting room for the last time and wished everybody good luck and a happy Christmas. One last appointment with the consultant who examined me and pronounced me clear of cancer. I think he was slightly disappointed that I didn’t turn cartwheels of joy, but I’m an old cynic. I will believe the scan results when I see them in three months time. Then I’m going to party like you won’t believe.

I know everyone is different but for me the side effects of the radiotherapy were much worse than the chemotherapy. Perhaps that is because the ongoing treatment is continually attacking the good guys as well as that nasty little alien, and you gradually get lower and lower. So if you are going to ask was it worth it?, would I do it again? Yes, in a heartbeat.

Hankies out, (Ignore this bit if you are butch).

Based on what we know about my condition, published statistics and case histories, we estimate that, left untreated, I should have died in September. Since then I have spent time with all of my family, and many good friends and made some new ones. I’ve Been to the pantomime with my four year old granddaughter and taken her to her first circus. The expression on her face was worth everything. And to see her on Christmas day when she realised Santa had been…………….

What's Next?

So from here on in I should get better and better. I feel like I should now do something worthwhile and monumental. Well let’s start with this site and work up from there. I hope this commentary helps someone through the deeply traumatic experience of being diagnosed with cancer. I am also looking to organise a charity event or events in the spring to try to put a little back into the Centre of Excellence which is Northampton General Hospital’s Oncology Department. If you wish to support such an event, make a guest appearance, (Kylie), or purchase tickets please click here for more information.

My Thanks.

I would like to offer my sincere gratitude not only to all the staff of the Oncology Department, but also all the primary care staff, Radiographers, Scanners, Haematologists, Vampires, Pharmacists, GPs, Macmillan Nurses and WRVS. The list cannot end there because some of the most important people have been my wife, son, daughter, daughter-in-law, granddaughter, my brother, himself a survivor, sister and special friends without whom I could easily have crumbled and given up. Thank you all for saving my life.

Mick Tilbury, A.K.A. Johnny The Razor.

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