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 I sat hunched in a Royal Free Hospital wheelchair cradling over a paper sick tray into which I was throwing up the final remains of my first meal of the day as searing pain ran up and down my right leg.
It was Wednesday, and just an hour of so after having radiotherapy. Sue and I had made our way to the discharge lounge to pick up the hospital transport home when I started to throw up. I had felt bad most of the day but the pain in my leg had increased in intensity at a rapid rate. It is unusual for me to be sick. The last time I had vomited must have been well over a decade or more ago. I am known as having a cast iron constitution when it comes to my stomach.
Someone at the lounge suggested that we go to the A&E department and a wheel chair was found. I promptly threw up when talking to the first doctor before finding myself waiting to be let into the A&E department proper. I was writhing in pain and as the nurses and doctors attended to me I became cold and shivery as my blood pressure yo-yoed up and down. A cannula line was put in and an anti-nausea drug injected (which worked) and then morphine (which didn’t do much). I was sent to MRI for a scan and tried my best to stop shaking as the machine whirred around me.
My brother-in-law Rich turned up like some guardian angle and with the attentions of the doctors and the nurses the pain became a bit more bearable. I wondered how people in the past coped in such conditions. I suppose if you lived in the middle ages then you just had to put up with it. The pain felt like my muscles were on fire and it’s easy to see how the medieval mind could conceive a vision of hell as burning alive for eternity. Certainly if you thought you might have to put up with that kind of pain after death it would focus your mind.
I was told that the MRI scan had shown the historic damage done to my back over 30 years of suffering from chronic back pain. Actually I was quite pleased in a strange sort of way. It’s the first time I’ve had real hard evidence to support the pain that I’ve had to endure on and off for so long. It must have seemed to those around me at the hospital that the cancer had suddenly gone mad and was rapidly attacking my body but I think it was just my normal chronic back pain placed through some kind of cancer induced pain amplifier. I recognised the pain as pain I’d had before, but of an intensity that was mind boggling and totally agonising. What had made the difference? The radiotherapy? Highly unlikely. The tumours in my spine? Possible. The new cancer drug? Most likely. I suspect that we will never know.
I was told that I was to be admitted and was trolleyed up into a very comfortable single room which overlooked the road leading up to Hampstead Heath from the hospital. In the evening the lights came on in the houses at the top and it was really quite magical!
I had been pumped full of morphine, anti-sickness drugs and a massive doses of steroids. At about 7:30pm Sue left to go home and then at about 8:30 the pain suddenly wore off. It was like being reborn. I turned over and fell into a deep sleep. The night slipped into a pattern of bouts of deep sleep punctuated by the kind and caring attention of doctors and nurses; measuring blood pressure, injected morphine and goodness knows what other drugs and taking blood samples.
The night passed well and in the morning I was even able to have some Corn Flakes for breakfast and kept it down. I found the staff delightful and very professional. I had been through a terrifying experience but had felt safe and well cared for. How lucky to live in a country where there is such good medical care free at point of delivery. How can people cope in a country where they would have to worry about paying for such attention?
Later in the morning the registrar who I had seen at the last oncology meeting visited me. For what it was worth I gave him my medical opinion that it was the steroids that had made the difference. They had stopped the inflammation, which caused the pain to subside. He didn’t disagree but said that I couldn’t be on such strong steroids for any significant periods. He reaffirmed that the MRI scan had shown that the slipped spinal discs where protruding outwards not inwards onto the spinal column (thank goodness).
With a new stupefying drug regime he was happy to discharge me. It took what seemed like ages for the pharmacy to come up with the drugs and for transport to be arranged but by late afternoon I was back home able to stand up and walk rather than hobble about like an octogenarian.
Now I have to get used to my new medications which include a psychotropic ‘blue’ pill which is meant to be good for back pain called Amitriptilline. My daily selection of drugs now includes:
Abiratone
Tamsololin
Paracetamol
Lansaprazole
MST (Morphine Sulphate)
Amitriptilline
Metochlopromide
Dexamethasone
Oramorph
Docusate
At the moment these drugs are making me incredibly sleepy. I seem to be able to sleep deeply for hours at a time, several times a day. It is a price however worth paying however to keep well away from the gates of hell.
Over the past week or so I have had a number of new experiences:
- Using a bedpan to have a piss in hospital
- Being taken to the hospital in an ambulance
- Being trolleyed around the hospital in a bed
- Learning how to use crutches and/or a walking stick
- Having my doctor visit me at home (unheard of)
- Meeting a pain management nurse and my main contact in a palliative team
- Learning how to use a class A drug (morphine) to try to manage my pain.
On Sunday night I was in so much pain that I hardly slept at all, so Monday morning I found myself in an ambulance taken to A&E at the local hospital while Sue rushed around trying to divine the labyrinthine processes of the NHS in order to give me access to palliative care. She was persistent (probably far more persistent than I would have been) and now a whole set of support mechanisms are in place. Soon I expect to be the proud owner of a blue disabled parking badge!
 It turns out that I had been taking too small a dose of Morphine. Somehow, given it’s class A status, I was initially inclined to be cautious – now I just swig it down every couple of hours.
On Monday morning all I wanted the doctors to do was to shoot me and put me out of my misery. My biggest fear is that I will have to live out the remainder of my life in permanent pain. It’s not a life worth living. However by the middle of the afternoon on Monday the pain finally started to come under control. The trouble is that as well as softening the pain the morphine also puts me to sleep!
Tomorrow I’m off to the Royal Free for Radiotherapy on my back. Hopefully it will help ease the pain and I may be able to wean myself off the morphine although by that point I may be truly addicted!’
 Back at Radiotherapy today for my set-up session – feel like I’ve got a season ticket!
This time it was much quicker setting me up on the ‘slab’. They didn’t even need to make some more tattoo markers – the ones from my radiotherapy sessions in October would do.
The most alarming thing was when the nurse reminded me that the pain will get worse initially before it gets better. To be honest I find it difficult to imagine the pain being worse. Even the morphine merely dulls the pains as opposed to eradicating it completely.
My radiotherapy session itself is booked for Wednesday. I expect I will be knocking back the morphine like water on Thursday.
After I got back I had an appointment at the local toe clinic to look at my extracted right big toe nail – it felt like going from the sublime to the ridiculous. The podiatrist looked at my toe like it was some kind of weird medical experiment gone wrong but declared that it is “healing well.” Even so I have been booked in for yet another follow-up appointment next week.
It sometimes feels like an enormous amount of fuss over my toe when I have ‘bigger fish to fry’ as it were. But at the same time I know that the last thing I could do with is an infected toe!
It’s strange but when you’ve got cancer it’s often the small things that get you down. You struggle through chemo or radiotherapy, you take the pills that turn you into a eunuch but when you spill your cup of tea it feels like the end of the world. You just want all the awkwardness of life to go away so that you can concentrate on keeping yourself together. But life goes on, and that includes the good and the bad, and the downright annoying.
 It’s always difficult to hear bad news and today’s clinical meeting provided plenty to worry about.
For a start my PSA has now risen to 63.2. In fact we didn’t have the latest PSA score as they hadn’t got the results from the blood test I took in the morning by the time we met the doctor. He said that he would phone me the results later. I fully expect that they will be even higher. All I can hope is that it is taking a while for the Zytiga(aberatone) to have an effect on the PSA.
More worrying was my back. On Good Friday I woke up in my parents-in-laws house having driven up (well Sue did a lot of the driving) from Enfield To Anglesey to find that my back had seized up and that I could barely walk. I spent the whole day in bed flat on my back and only managed to walk a short distance the following day. Now I have suffered from back ain throughout my adult life but the level of pain was shocking and alarming. I’m not talking about pain but PAIN!!!
I was already dosed up with a cocktail of paracetamol, Ibruphen and codeine but it had no effect on the pain whatsoever.
At the clinical meeting the doctor was emphatically of the opinion that the back pain was caused by the secondary tumours in my spine. The solution? More radiotherapy. I’m back at the Royal Free on Friday for my set up session. Oh yes, and I’ve now been prescribed morphine for the pain!
I think the biggest shock of the meeting was looking for the first time at my last bone scan. I had been told that I had secondary tumours in my arm and spine but on the computer screen my skeleton looked like it was it up like a Christmas tree! It was not easy viewing.
However it’s not all bad news. The blood results seemed to show that my liver function was OK and the problem I’ve been having with bruising and bleeding following my toe operation is most likely caused by the steroids thinning my skin rather than any issue with the blood itself.
Oh well! It feels like one step forward, two steps back. I think the next clinical meeting in a month’s time will be critical. If the PSA scores are not showing signs of falling then the conclusion might be that I’m one of the 20% of men for whom Zytiga doesn’t work. Just my luck!
Early in the New Year I had the in-growing toenail on my right big toe removed. At the time the podiatrist suggested that I come back and have the big toenail on my left foot (which has had a fungal infection for decades) removed. So after checking with my oncologist I went ahead and on 14th March underwent surgery to remove the said offending toenail.
I had the operation first thing in the morning and soon after getting home the toe began to bleed uncontrollably. A few days later I went back with a blood soaked bandage to the podiatrist who changed the bandage and expressed surprise that the toe was bleeding so profusely. Although following the check up the toe didn’t bleed quite so freely I still had to change the bandage daily as blood was coming through.
Last Tuesday I went back for another follow up visit to the toe clinic. The podiatrist poked around with my toe and re-bandaged it and then sent me home whereupon it starting haemorrhaging uncontrollably again. By 7:30 in the evening I was at the local A&E with blood soaking through my shoes leaving bloody footprints everywhere.
In the end the doctor at the A&E cauterized the toe with silver nitrate and I was sent home again. I got back at about 11pm and as soon as entered the house it started bleeding again! So at 6:30 the following morning I found myself back again at A&E. This time the triage nurse gave me some crutches and told me to keep all pressure off the foot. So I hobbled about on the crutches (I never realised that using crutches was such hard work) and spend the next two days on the sofa with my leg up.
So far it seems to have stopped bleeding and I’ve stopped leaving pools of DNA evidence everywhere I go.
Now I mention this turn of events not to elicit sympathy but rather for a philosophical point. You see, the truth is that my big toe, bleeding or not, is small fry. In the big scheme of things it’s not really very important.
But my cancer is.
The thing is we can always be over-concerned and absorbed with things that appear urgent rather than important. There is an immediacy to life that makes it difficult for us to maintain a balanced perspective. That’s why we forget to say to our loved ones that we love them. We always imagine that there will be time for that when we’ve finished all this immediate stuff. The trouble there always appears to be ‘stuff’ for us to deal with.
One the best management tools I remember using in my professional life was the urgent versus important matrix. It’s very old hat nowadays but that’s because it still holds true:
Each quadrant shows a different aspect of the ‘stuff’ that we have to deal with. The bottom right quadrant is for ‘stuff’ that is important but not that urgent. My cancer fits into the bottom right – not-urgent (well most of the time) but important (very important!).
The bottom left hand quadrant is for ‘stuff’ that is not important and also not urgent – stop doing it whatever it is!
The top left quadrant is for ‘stuff’ that appears urgent but is actually not important at all. This stuff is the all the time wasters tat litter our lives.
The top right hand quadrant is for ‘stuff’ that is urgent and important, like a sudden medical emergency. This ‘stuff’ is usually obvious.
We should all be spending our time in the two right hand quadrants dealing with ‘stuff’ that is actually important to us. Yet sadly we can often find we spend inordinate amounts of time stuck in the left-hand quadrants. It’s always worthwhile pausing during all our hectic rushing about to make time to ask ourselves, “Am I spending my time doing something important to me?” The answer is often very illuminating.
 I was at the Royal Free Hospital yesterday – blood test in the morning and my radiotherapy session in the afternoon. The radiologists greeted me as an old friend from my four week sessions back in October – “no need to take you through the spiel,” they said.
It took ages to position me on the slab, far longer than I remember when they radiated my prostate. One of the radiologists said that positioning the arms is more difficult than anything else. I could well believe it.
The three radiologists were lovely young girls and for my treatment I had to remove my shirt and vest. To their credit none of them sniggered or giggled at my hormone induced burgeoning breasts. I do find it embarrassing removing my top these days and avoid it all costs.
When I went for my blood test I noticed that the hospital has build a WH Smith near the main entrance. The sight reminded me of a radio programme I had heard recently where a young business management type was discussing locating shops in railway station to provide a retail ‘experience’. Apparently this was necessary in order to improve the ‘journey experience’.
‘Experience’ must now be one of the most mis-used words in the English language. I happen to think that the English language is a national treasure that should be lovingly cared for rather than bludgeoned beyond recognition.
Everything nowadays is described as an ‘experience’. Museums are no longer museums but ‘historical interaction experiences’. Holidays are ‘vacation experiences’. Everything it seem is an experience. Of course that’s the point. Everything that happens is an experience. So we can have the ‘poke-myself-in-the-eye experience’ and the ‘snub-my-toe experience’. The only exception would be the tautological ‘death experience’ (although it is still possible to have a near-death experience).
The point is that adding the word experience does not provide clarity but merely serves to provide a kind of linguistic froth that seems to me to sum up the worst of our superficial and shallow modern culture.
I wonder then whether the management at the Royal Free Hospital placed the WH Smith outlet at the entrance in order to enhance the ‘hospital experience’. Perhaps the magazines in the radiotherapy reception were there to enhance the ‘radiotherapy experience’. Unfortunately referring to either as an ‘experience’ does not change the reality – visiting the hospital is nothing other than stressful and depressing.
 Be more positive,
Then you’ll be saved,
Smile and grin,
To avoid the grave.
Pray some more,
And beat your chest,
Shout to the Lord,
Then you’ll be blessed.
Be more pious,
Bend your knees,
More god and grace,
That’s what you need.
Don’t mope and groan,
About your lot,
Just think about,
All you’ve got.
Don’t let that cancer,
Beat you down,
Just keep your feet
Firm on the ground.
But what if you,
Just can’t pretend,
To be happy and jolly,
What then, what then?
When the doctor at the homeopathic hospital was filling in a form I couldn’t help notice that under diagnosis he wrote; metastatic prostate cancer (stage 4).
So there you are I thought to myself. I’ve arrived! I’m a fully-fledged chemo veteran and stage 4 cancer patient. They should give out certificates or awards, like swimming medals. At least then I would feel that I’ve achieved something – just surviving for three years!
 My dreams lie shattered,
Like shards of broken glass,
Littered across a desolate landscape,
Where once mighty citadels,
Of shining crystal,
Stood proud against a youthful sky,
As testament to my ambitions.
I remember the rooms of hot desire,
And the high vaulted halls of hope,
That filled those soaring tenements,
And looked over a landscape,
That seemed to stretch forever.
I would often walk through those corridors,
As I planned a grand future for myself,
With the sure and certain knowledge,
Of endless time before me.
But now I trudge through mud,
And stagger over the rubble of my life,
Feeling how foolish I have been,
To let time slip through my grasp.
The sky is grey and overcast,
The world a cage that has crushed my dreams,
And left me naked and destitute.
 It took them nearly an hour to set me up on the radiotherapy simulation machine at the Royal Free Hospital yesterday. At the end of it my chest and upper arm looked like a youth with an ASBO had scrawled graffiti all over them and then tried to rub it out. The nurses put two permanent tattoos on my chest and arm – just small dots so that they could position me for the radiotherapy session. Of course I wanted them to tattoo, “FUCK OFF CANCER” all over my chest but I had to make do with the dots and smudges of wiped-off felt tip pen ink.
The radiotherapy session itself is planned for next Monday in the afternoon. This time I’m having one really big blast of zapping rays rather than the twenty sessions I had back in October. I suppose as it’s my arm there are no sensitive organs that could be damaged so they might as well give it all in one go. The radiotherapy nurse rather ominously informed me that the pain would almost certainly get a lot worse following the treatment before it gets better. Great!
In the afternoon I was back at the Homeopathic hospital to see what they could do to help. The doctor listened and prescribed me some homeopathic remedies to help the pain – small sugar pills. To be honest I don’t believe in homeopathy but if someone told me that sticking my head in a deep fat fryer might help cure my cancer I’d probably do it. And anyway I haven’t got the heart to tell the doctor that I think it’s all nonsense.
I also got the doctor to refer me to the acupuncturist although I was told that she had a long waiting list. Shame. I’ve never had acupuncture before but it seems like it might be a very useful tool in pain management.
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