Cancer – Prognosis and Treatment Plan

Sorry for the delay in posting but on some days I don’t feel I have the energy to do that much. Anyway, I’ll try to bring it all more up-to-date.

Last Wednesday I had my appointment with the Oncology doctor. Matthew came with me, it definitely helps not being on your own. It was strange going into Oncology as it’s the part of the hospital where I worked when I was casualty porter. It looks the same from the outside but inside is all new and shiny (anyway a lot shinier than when I worked there).

In the room with the doctor was one of the lung cancer nurses and a nurse who is carrying out an evaluation of a new cancer drug.

The doctor took me through the in and outs of chemotherapy, that I would start off by having two drugs injected and eight days later I would have one of them again. After that there would be a period of thirteen days to recuperate before going through the cycle again. I think the course is three times through this cycle. Then everything  would be evaluated (as it would be throughout the treatment).

I had a few questions:

  1. How effective is chemotherapy? I didn’t really end up with a clear answer to this. I can see why – cancer comes in different types and attacks different organs and chemotherapy doesn’t work with everyone.
  2. What’s the prognosis for what I have? Without chemo I would probably not last longer than a number of months and possibly a year or so. With chemo (if it works) I could get another four or five months. That was a bit of a surprise but not totally unexpected.
  3. What are the negatives around chemo? It doesn’t work on everybody. People react differently, some have no problem with it while others get very sick. Also as it is attacking the cancer cells it also attacks the good cells, resulting in a lowering of resistance to any illnesses which are around.

At  the time I sort of thought, “What choice do I have”, so I said I would go ahead with it. A date was set, which is tomorrow, 24th August. After a few more tests – blood, height weight etc. Matthew ran me home. Royal_Lancaster_InfirmaryI wasn’t keen on telling the family but, when I told Denise, she wasn’t very surprised. Matthew seemed to take it well but Anna was upset at the news.

Later in the day Denise spoke to one of the lung cancer nurses. My breathing wasn’t so hot at the time (it comes and goes) and I was also coughing quite a bit. So Denise asked her if there was anything that might help. She said that, for the cough, it would just be cough medicine as there wasn’t anything in particular that they would be able to give me. But, for the breathlessness a medicine called Oramorph could help.

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Denise rang the GP surgery (see how I’m getting out of doing things), and later in the day Sam went and picked up the prescription from the pharmacy. Looking at the bottle when he came home I realised that what I had been prescribed was Morphine.

It’s quite difficult in my position as I am a recovering alcoholic and addict though I’ve never tried heroin or morphine (basically the same drug except that heroin is more potent weight for weight). But I know I’m going to need some kind of pain relief as things move on so, all-in-all, I’ll do what they tell me and take what they give me to take. I know this will be frowned upon by some twelve steppers but I don’t intend to be a martyr for anyone.

But, overall, I am feeling positive about things; not that I’m likely to buck the system but rather that we will deal with what comes along as it comes along and try to make the most of whatever time we have.

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Sam, Me, Denise with Rosie and Anna plus Poppy

Until my next post, which I will try to get out a bit more speedily than this one, thanks for reading this.

Harm Reduction – A Seatbelt for a Reckless Soul?

Okay, the heading doesn’t make much sense. I was looking for something catchy and this was the best I could come up with. Don’t be too hard on me, I’m an old man.

What is Harm Reduction?

When I was sixteen I had a moped, which was a bit like a motorised bicycle with a top speed of about 30 miles an hour (with the wind behind you). Anyway, I was working at a local co-op, either Strawberry Gardens or Fairfield Road, and I was using the moped to go backwards and forwards to work. One day when I was riding home a dog ran out in front of me near the bottom of Smithy Lane in Heysham (I was told this afterwards as the incident is a total blank). I came to in the Queen Victoria Hospital in Morecambe and was allowed back home after, I think, a couple of days, with no after effects as far as I can tell. Had I been wearing a crash helmet, which was voluntary in those days, perhaps I would have escaped without injury. I’ve mentioned this incident because it seems to me to be a good example of where harm reduction (the wearing of a crash helmet), would have made a difference.

If people are going to use drugs (and it seems that, whatever laws we have in place and whatever drugs education we provide), they are, then making that drug use as safe for them and for the wider society seems to me to be eminently sensible.

I know the arguments against harm reduction – “It just encourages them to take drugs”, “drugs are dangerous, why are we helping them to take them?” etc. Well, riding a moped is dangerous so should we just ban the riding of them? Or provide harm reduction in the form of crash helmets, road signs etc.? As far as drugs are concerned it seems that people are going to use them whatever we do. Our laws on drug use are pretty tough but more people are using more drugs and the legality or otherwise of those drugs doesn’t, for most drug users, seem to make much difference. And if we’re going to ban drugs because they’re harmful then alcohol and tobacco are long overdue for being made illegal. On nearly any measure you choose to look at alcohol is the most harmful drug in our society.

I got sober in AA, which is very much focused on abstinence, and I have to say that, for me, abstinence is the only way. For a number of years I thought that abstinence was the only way for anybody who has a problem with alcohol or other drugs. But over time, and especially when I started working as a trainer/educator around drugs and alcohol for the NHS, I started to see that there were other ways of dealing with drug problems. Firstly, not everyone who has a problem with drugs is an addict. Some people seem to just use too much too often and it ends up causing difficulties – for them (health, money, crime) and for the people around them. Or they turn to drugs as a way of dealing with some particular difficulty and, when the difficulty is dealt with, the drug problem goes away. Secondly, addiction isn’t just one thing, it’s a continuum and individuals need different things in order to recover (whatever we mean by ‘recover’; I’ve already written about this here).

This became clearest to me in the last few years of my working life, up until I retired two-and-a-half years ago. In that period I worked as part of a drug training team at a place called The Jarman Centre in Blackburn

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The Jarman Centre. That’s the door I used to walk through each day

Our team – John, Hasan, Claire and me – were in the room above the window on the right. Downstairs to the left of the door was the needle exchange with the training room on the right. Behind our room was the sexual health team and, on the second floor was the sex education team, our manager Angela, Tony, the manager of the harm reduction service and, at the back, our library.

This was, without doubt, the happiest place I have worked. We all worked as a team, supporting each other and sharing knowledge, skills and experience, and there was a wealth of all those things to share. The Needle Exchange was a classic example of harm reduction in action. It was anonymous, friendly and people could come in and get what they needed without any hassle. There was also the opportunity to chat with a nurse or volunteer (these were often people who were in recovery), and get help around blood borne viruses or other health problems. As a training team we delivered training about all aspects of drug and alcohol use – the new drugs, working with drug users, recovery, alcohol use, harm reduction, young people’s drug use, blood borne viruses and so on. At the heart of all the training we did was harm reduction.

Sadly the Jarman Centre is no more, a victim of the obsession with recommissioning services every few years. This seems to be a way, not to get better services, but to save money while at the same time keeping staff and the people who use the services in a constant state of uncertainty.

I think I retired at the right time. There was already a move towards what is called ‘The Recovery Agenda’ while I was still working and, as far as I can see, it goes on. This seems to be a move away from harm reduction and towards abstinence as the only goal of drug treatment.

I’m sure I’ve more to say on this subject but I think that’s enough for now. I’m sure there will be some disagreement with what I have written but all I can say is that these views are based on my knowledge and experience.

Take care.

 

The Start of NA in Lancaster

Until 1986 there were very few Narcotics Anonymous meetings in the North West. I was a member of Alcoholics Anonymous at this time but I was having some problems with individuals in the meetings who objected to my mentioning drugs in my shares (there were also objections to any mention of sex). I didn’t see, and still don’t, how I could share my experience, strength and hope without talking about the other drugs I had also had serious problems with. In this I was not alone and a group of us (seven if I remember correctly) decided to look into starting an NA group.

By the way, I’m not going to mention any names as, although I am not concerned about my own anonymity (obviously as I am writing this), other people’s anonymity is their responsibility.

Anyway, we looked at what meetings there were. As far as I remember there was a meeting in Manchester, some 60 miles away, and one in Blackpool which was much nearer. We decided to visit the Blackpool meeting to try to get a better idea of how NA meetings were run. It was an eye-opener. It was a small meeting made up, if I remember correctly, of mainly middle-aged women, and the person doing the main share (this was just after Christmas), talked about having a glass of wine with her Christmas dinner, “not that I would advise you to do that”, she made a point of saying.

So we came away with a good idea of how not to do it. Continue reading

Addiction – It’s not about the drugs

When I first went to Alcoholics Anonymous, which you can read about here, I thought that everyone was there because they had a problem with alcohol and that, having stopped drinking, they were now okay. I knew my problems were deeper than that so I soon dropped out.

Eventually the penny dropped, they weren’t there because they had a problem with alcohol, but because their lives were unbearable with or without alcohol. The same for Narcotics Anonymous and drugs (I went to lots of NA meetings as well).

What I realised over time was that alcohol and other drugs (and by the way I don’t think of alcohol separately from other drugs but, if I just write ‘drugs’, some people will think I’m not also writing about alcohol; they’re all ‘drugs’), anyway, what I realised that alcohol and drugs were what I used to try and fix what was wrong with me and, being the person I am (see herehere and here), they eventually became problems in themselves. So, in order to do anything about the underlying fears and phobias and insecurities, I needed to stop drinking and using. Continue reading

Why am I in Recovery While Others Didn’t Make It? (part 2)

I started writing about this in my previous post which you can read here.

So I ended up sitting on Sandylands Promenade, between Heysham and Morecambe, on the morning of April 22nd 1984 (I always thought it was the 21st until I checked on Google Calendar).

 

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Called Sunshine Slopes on the photo but known to me as Sunny Slopes

Anyway, there I was, no money, nothing to drink, not sure if I had any baccy or papers but I certainly felt as though I was at the end of something.

And it was then that things changed. Continue reading

Why Am I in Recovery While Others Didn’t Make It? (part 1)

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Why me?

I thought I would cover this in one post but I realise that I’ve quite a bit to say about ‘Why Me’. So I’ll be writing more over the next few days.

I sometimes think about the question “Why me?” Why did I recover from my addictions and others didn’t? I’ve seen enough people die along the way, people who seemed to struggle with addiction as much as I had, and had gone through worse experiences than me; who had gone to 12 step meetings, dropped out, come back, gone into treatment (something I never did), taken overdoses, walked into Morecambe Bay and drowned, or were just found dead in bed.

So what was it about me? What did I do that made me different? The answer? I don’t really know. Honestly. That’s not some sort of false modesty or attempt to be enigmatic. I genuinely don’t know.

I can look at how it happened and make a stab to some answers, at what I believe led to my recovery. Continue reading

Why I don’t just write about addiction and recovery

One thing I remember from my time in AA is the phrase “A bridge to normal living”. As to how far my life is ‘normal’ is not for me to judge. I certainly do lots of normal things like washing up, cooking, cleaning, shopping and providing a taxi service for my 16-year-old daughter (she’ll be 17 on Monday and at the moment has some school friends round for pizzas and drinks and Denise’s brother sent a bottle of champagne for them to drink to their successes at GCSE and the start of sixth form – for me it will be coke).

For pleasure I read (voraciously), play my guitar (not as much as I should), write this blog and spend time with my family.

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That’s me with the bald head. We were at Superspirit Camp which I’ll write about at some point

Addiction doesn’t take up a huge amount of my time today, except when I’m thinking and writing about it for this blog.

So these other things are, in a sense, my recovery. I didn’t recover to spend my time thinking about alcohol and other drugs; I spent enough time doing that when I was using.

No, today I’m on that ‘bridge to normal living’, not that I believe I’ll ever get to the other side. But I’ll tell you something, the view from here is pretty good.

Take care

12 Step Fellowships – How attitudes have changed

Disclaimer

I need to make clear at the start that I am not a member of any 12 step fellowship. I did get my recovery through AA and NA and went to meetings, on and off for about 5 years before I got into recovery, and then two or three times a week after that. I haven’t been to a meeting for, it must be, 15 years, so that will be around the time this story starts.

I wanted to clear that up because I don’t want anyone to think I am breaking my anonymity (a very important 12 step principle).

So, on with the story.

My job as a drug and alcohol trainer

In the late 90s I started work as a drug and alcohol trainer with a local NHS Trust. One of the reasons I got the job was because of my experience of addiction and recovery. On my first day I met with my manager. She said that, as this was a new post, I needed to visit local drug and alcohol agencies to get some idea of what training was needed and how I could be of use.

So I did, and it was an interesting experience!

I’ve always been pretty open about my addiction and recovery so I had no hesitation about telling various drug and alcohol workers and managers that my recovery was due to 12 step fellowships.

The response was striking. As soon as I mentioned 12 step I could almost see them looking around in panic for cloves of garlic and wooden stakes! Here was this brainwashed religious fanatic coming in to poison their minds, and those of their clients. Continue reading

Addiction and Greed

Since writing my previous posts about how I believe my addictions are linked to my personal traits and foibles (great word foibles, worthy of Miranda Hart), I’ve been thinking more about how I am and how I was and how this influenced my drinking and drug use.

The character trait I’ve been thinking about most is greed, what Merriam-Webster defines as ‘a selfish desire to have more of something (especially money)’. Money was never a big one with me, except in so far as I needed money to get what I wanted (needed?) But I was always greedy, at least from as far back as I can remember – greedy for toys, for sweets, for anything that gave me pleasure. And I’m still that way. I have an e-reader and I’m forever looking for new books to read, even though I’ve got more than I can read in a lifetime. The same with music, or podcasts. What I want is all of it, all the music, the books, the podcasts the ……. Well, you get the drift.

So I was thinking about how greed and my addictions fitted together and I see that, in my addictions, I was always greedy. I can remember spending evenings at a friend’s house where we would sit around sharing a joint. Where other people would be satisfied with a few smokes I wanted more. The same with alcohol; I was a greedy drinker, trying to suck as much Carlsberg Special or vodka or whatever I could get hold of down my throat, at least until the shakes and the terrors eased off. But I suspect that addicts generally are greedy, although I can only speak for myself.

It was as though I could never get enough, even though I would usually fall into a drunken stupor. Then when I came round I’d be off again, looking for more, more, more. Continue reading

Addiction – What it means to me (part 3)

You can see from my two previous posts on addiction that I wasn’t exactly the most confident, relaxed and honest person around when I was younger, even before I got into active addiction.

My extreme self-consciousness and shyness meant that the best thing to do would be to have kept a low profile, not drawing attention to myself in any way. So what did I do? I grew my hair long (that is long for the mid-sixties, which was anything below collar length) and, by the time I was 18, I was going around in purple or orange satin shirts, red trousers, and a woman’s fur coat, all of this topped off with a flat cap, just the outfit to make you feel invisible! I wish I had a photo of me in this getup, perhaps Steve has one in his vast collection.

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Me and Steve on Sandylands Promenade, 1967, with satin shirt and red trousers (honest) but without fur coat and flat cap. I think that’s my Hagstrom 12 string next to me

It’s as though I wanted to be invisible but at the same time I craved attention. Just one of the contradictions which go into making a personality; and I believe I’m not alone in this, I think we all have all sorts of contradictions working away beneath the surface affecting our attitudes, beliefs and the way we interact with the rest of the world.

So what has this got to do with addiction? I’m not sure but I do know that, although I was very shy in interpersonal relations, I loved performing and alcohol in particular helped me to release that side of my personality. It also helped me to be less shy and more relaxed around other people, especially girls, who at the same time attracted me and also scared me to death. Continue reading