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 years. 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.

Blue Badge!

Another thing that came out of yesterday’s hospital visit is that I am eligible for a Blue Badge, which means no more car park charges and less hassle finding a parking space.

After my session with the doctor I saw one of the lung cancer nurses. She was great; friendly, competent and very helpful. She explained about what would happen in my appointment in Oncology and then said she would arrange for a Blue Badge and sort out any benefits I may be eligible for. Finally she gave me two books, one about the financial help available and one specifically about lung cancer.

The Diagnosis

Thanks for all the Messages of Support

It was quite touching to read all the positive messages in response to my previous post, both on my blog and on Facebook. They made me feel warmly cared for. I’m writing this here as I don’t think I would have the energy to reply individually to everyone. Thank you to everyone.

What I hadn’t realised, until today, was that there isn’t a definitive diagnosis of cancer until a biopsy has been done.

The Camera

A week ago today was my appointment to have a camera passed down my windpipe into my lung to get a closeup of the tumour; at the same time a swab would be taken to enable the biopsy.

I was taken into a room in Endoscopy where there were, as far as I could tell, two consultants and several nurses, plus a few thousand pounds worth of sophisticated electronic equipment. A nurse carefully explained what was going to happen then one of the consultants inserted a needle into the back of my hand, taped it in place, and injected me with a sedative. I didn’t feel any drowsiness or loss of consciousness but, looking back, after having some sort of anaesthetic sprayed into the back of my throat and a sort of gag fastened in my mouth, all I can remember about the following hour (I think they said that’s how long it took), is every so often feeling I was choking and a nurse using a suction device in my mouth to get rid of whatever was there. I don’t remember the camera being inserted or anything anyone said.

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A room something like the one I was in

Afterwards I was wheeled into another room and left to recover for about an hour and a half before being offered a drink and something to eat.

The staff were great; in fact the staff at the RLI have been fantastic right through, clearly describing what was going to happen and making me feel as though they were there to help me as much as possible.

Then Ric came to drive me home.

The Follow Up

Today was the follow up meeting to get the results of the biopsy and to find out what would happen next. I had arranged for Matthew to take me and he took some time off work to do so.

The doctor I saw was one of those who had been there the week before, in fact the one who had given me the sedative. He started by saying that the news was not that good; in fact what he meant was that the biopsy had confirmed it was cancer, something I thought had already been confirmed. It was then that he explained that a final diagnosis couldn’t be made until an actual biopsy had been performed. He told me that the type of cancer I had was ‘non-small cell lung cancer’ (NSCLC) which is by far the most common type of lung cancer and is slower spreading than small cell lung cancer, and that the treatment which would be offered would be chemotherapy (surgery was out because of the secondary cancer in my liver). I am not unhappy about this as surgery is something that scares me. He had made an appointment for me to see a doctor in oncology who would explain what chemotherapy entailed and offer it to me. I will, of course, accept.

Matthew was great, calm and supportive and helping me feel I wasn’t on my own. Thanks Matthew.

Will write more tomorrow.

A New Reality

I found out, a week or so ago, that I have lung cancer, and also some problem with my liver.

This all started a few weeks ago when I was feeling unwell and made an appointment to see the doctor. I was a bit nervous about this as I have a tendency to try to ignore problems in the hope that they will go away. For example I have very shaky hands, something that has got worse over the last few years, and I worried about what the cause could be.

Anyway, I went to the appointment and the doctor reassured me that the shakiness was not due to Parkinson’s but was more connected with my ageing  body, a ‘normal’ part of growing older. I left the surgery feeling somewhat more optimistic about my health.

A day or so later I had a phone call from my GP asking me to go in and see  him. This I did and he carried out a number of tests – checking my weight, listening to my lungs, feeling around my abdomen for anything unusual. He then made an appointment at the RLI (Royal Lancaster Infirmary)  for me to have a chest x-ray. I also had blood taken.

So I had blood taken (definitely  less than an armful) and went off to the RLI for my chest x-ray. It turned out that I was anaemic, had some sort of inflammation in my abdomen and there was a suspicious patch on my upper right lung. The doctor explained that, as the x-ray was all in one plane, he wasn’t able to see if there other things going on in the lung and that he was going to arrange for a CT scan which would show up the different layers. He also prescribed antibiotics to get rid of any infection in the lung.

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A few days later I had the scan, I had to lie on the table which then slid in and out of the ring, the machine telling me when to breathe in, when to hold my breath, and when to breath out. The whole thing took about 10 minutes.

This showed that there was definitely some cancerous cells in my lung as well as in my liver.

I’m a bit tired now but I’ll write a bit next about the emotional effects of this news on my family and how we are dealing with it. Actually, apart from having very little energy and spending most of my time in bed, I feel fairly positive and intend to deal with things as they come along, rather  that spending my time worrying about what might happen.

But it is definitely a new reality.

What I’m Reading This Week (5/11/16)

Another week of flitting between books trying to find something to hold me.

coverI finished reading The Ginger Man and I’m not sure how I feel about it. Oh it’s very well written and gives an evocative sense of Dublin at the time (the late 1940s), but I had a real problem with the hero, Sebastian Dangerfield. Although he is an American he comes across as very Irish. I had to keep reminding myself of his nationality. Then there is his behaviour and attitudes. I know he’s a fictional character and that even unpleasant characters can be likeable. But, in the end, I just found him to be someone I didn’t want to spend any more time with. I finished the book, but I had to push myself to do so.

So then I was looking for something else to read. I was browsing one or two blogs when I came across a review of Something Wicked This Way Comes by Ray Bradbury, which you can read here. coverThis was another book I had read many years before and had thought about starting again. So after reading the review I started reading it. I had forgotten what a great stylist Bradbury was. Like The Ginger Man it’s very evocative of time and place, this time (I think) 1950s small town America. Anyway, I’ve read about a quarter of the book, am enjoying it and will be reading the rest over the next few days.

I started several other books this week (as usual) but haven’t stuck with any of them except the one I’ve just almost finished, Late Call by Angus Wilson. coverThis is set in an English new town in the early 1960s and is the story of a retired hotel manager, Sylvia Calvert who, with her husband, goes to live with their son, a headmaster, in Carshall New Town. What’s interesting, apart from Sylvia’s internal life, are the undercurrents and tensions running between all the main characters – Sylvia and her husband and son, her husband and various people, her son and his children – and the various problems and challenges of living in a new town. I have thoroughly enjoyed it and will definitely be reading more of Wilson’s books.

 

 

After I’ve finished Late Call, and have read the rest of the Bradbury, I’m tempted to reread another book I haven’t read for many years, Dune by Frank Herbert. I’ll let you know how that goes next week, same time, same station.cover

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.

 

What I’m Reading This Week (29/10/16)

Another week, another batch of books (although most have only been part read).

Last week I wrote a bit about Flann O’Brien; I had started rereading The Hard Life and was reminiscing about a long-ago holiday in Ireland. Well, I finished the book, enjoyed it and, as is my wont, immediately looked for something else to read. I did what I generally tend to do when looking for something to read – scroll through the books on my Kobo to see what strikes my fancy.

I started several books but, at first, couldn’t find anything that I wanted to spend a day or two reading; My Booky Wook by  Russell Brand (might be fun but not what I was looking for), Wounds to Bind by Jerry Burgan (about the birth of folk-rock in the US, focusing on the group that Burgan was in, We Five, who I’ve never heard of. Interesting but, again, not quite what was needed), The Shape of Water by Andrea Camilleri (the first novel about Inspector Montalbano. My wife and I enjoyed watching these on TV and the novel seems promising but, again, not just now).

Then I came across a book that seemed as though it would satisfy my needs, Selling the Sixties: the pirates and pop music radio by Robert Chapman. 

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I remember the pirates. When I was at school, Morecambe Grammar in the early to mid-sixties, I used to listen to Radio Caroline on a transistor radio while on my way to school on the bus. There was little else to listen to, the BBC was rubbish if you wanted to hear pop music, and Radio Luxembourg was better but the reception was lousy. So Radio Caroline was the answer to a prayer. It started broadcasting from Ramsey Bay in the Isle of Man on 6th July 1964, a year before I finished school.

I can remember some of the music that was played; Tobacco Road by The Nashville Teens was definitely one, and a song I still think is fantastic, The Days of Pearly Spencer by David McWilliams, an Irish singer-songwriter who, I believe, should have been better known.

All in all an fascinating book, but probably only to those who have an interest in the pirates. Continue reading

Books! Books! So Many Books! (even more)

Continuing the list of books which have made an impression over the last ten years(ish).

Until I Find You by John Irving

coverI’m not sure if this was the first book by Irving I had read and I’m not sure if it’s my very favourite as I have read all of them over the last few years and enjoyed them all. I suppose it was a toss-up between this, The Cider House Rules and The World According to Garp.

Until I Find You is a book about memory, the memories of the adult Jack of his childhood. The novel follows Jack from childhood, as the son of a tattoo-artist mother in Toronto, through to adulthood, taking in themes of abandonment by his father, abuse and the search for a family. Geographically it moves from Canada through parts of Europe to the United States. I found it rich and evocative with memorable characters and an engaging storyline.

If you like a good story well written I would recommend any of Irving’s novels.

We Have Always Lived in the Castle by Shirley Jackson

wehavealwayslivedinthecastleThis is the story of the Blackwood sisters, Mary Katherine (‘Merricat’) and Constance, who live with their uncle, Julian, in a rambling house with extensive grounds near a village. The rest of the family died six years earlier, poisoned at dinner and, since then, Constance has not left the house. Constance was charged with the murder as she was the only one at the meal who wasn’t poisoned (the poison was in the sugar and she didn’t have sugar on her blackberries), but was acquitted at trial. Uncle Julian was poisoned though he survived, although his wife was one of the victims. Merricat wasn’t at the dinner as she had been sent to bed as a punishment.

Bit by bit the story comes out, partly through the notes uncle Julian is constantly making for his proposed autobiography. A cousin, Charles, arrives and begins to get close to Constance, although Merricat is suspicious of him. I won’t say any more about the plot as I don’t want to spoil it. It’s a strongly atmospheric story giving a strong and sinister sense of the house, the grounds and the two sisters. Jackson is a terrific writer and deserves to be much better known. She was an influence on, among others, Stephen King and Neil Gaiman.

I would also recommend her novel The Haunting of Hill House and short story The Lottery. Continue reading

Books! Books! So Many Books! (continued)

Following on from my last post (which you can read here), in which I started listing the books that had made the most impression on me over about the last 10 years, here are a few more.

The Winshaw Legacy: Or, What a Carve Up! by Jonathan Coe (1994)

coverThis novel is the story of the Winshaws, a nasty, disfunctional, aristocratic family, and takes place in the 1980s. It’s a book about Thatcherism and the greed that went along with it. And it’s very funny.

It’s a bit like a cross between Dickens and Wodehouse and centres on a writer, Michael Owen, who is hired to write the history of the Winshaws. In undertaking this he uncovers lots of skeletons in lots of cupboards.

Coe is a terrific writer and I’ve also read some of his other books which I can also recommend: The House of Sleep and The Terrible Privacy of Maxwell Sim.

Absolute Beginners by Colin MacInnes (1959)

coverThe book is set near the end of the 1950s (as I’ve said before, a decade I love reading about), and is about the birth of teen culture as a distinct thing. It’s set in London and is about a group of teenagers as they discover sex, drugs and music. There’s a sort of innocence about it, probably caused by knowing what came after. But it’s very evocative of the time and place, a few years before youth culture really took off.

It’s the second book in The London Trilogy and follows on from City of Spades, about the emergent black culture in London. It is followed by Mr. Love and Justice, which focuses on prostitution and was published the year after Absolute Beginners.
I haven’t read either of these but intend to eventually. Continue reading

Books! Books! So Many Books!

I was trawling through my Calibre book catalogue earlier today (and if you have an ebook reader then you really should check out Calibre – it’s free, it’s fabulous and it’s fun, and that’s enough fs for now), looking through the books read column. This started me thinking about which books, out of the who-knows-how-many-thousand I’ve read, had either given me the most pleasure and/or had made the biggest impression.

That’s a difficult one; there’s something about books you read when you are young, the vividness, the intensity, that no book read today can match (at least that’s how it is for me, but perhaps that’s just because I am a stilted, diminished old man). So, to remove that problem, and to make the list more contemporary, I’ll keep it to books and authors I have encountered in, say, the last ten years. Of course, being the untogether, disorganised person I am, that ten years is a fairly flexible period. Much as I try to keep lists of books I have read, together with the dates I finished them, plus a short review, I never manage to keep it up. I did buy a reading journal a couple of years ago, wrote lots in it for a couple of weeks, and now can’t even find it. Recently I decided to have another go, so looked on Amazon and saw that they were selling an A4 Moleskine© A-Z book for £6 (reduced from £24.38, and who can resist a bargain!) The book came and it’s now sitting on top of a cupboard, unused.

Anyway, here goes. I don’t know how many there are, but if there are too many for one post I’ll do more.

Non-Stop by Brian Aldiss  (1958)

coverI think this was published in the U.S. as Starship, which is a bit of a cheat as it gives away an important element of the book.

It’s Science Fiction, which is probably the genre I’ve read most in. It’s also a book I had read before, more than once. But it’s a great story, atmospheric, claustrophobic and, ultimately, a book about the indomitable nature of the human spirit. And Aldiss is a terrific writer.

I read it again, a couple of years ago, to see if it was as good as I had thought it was in my late teens. It was; I loved it.

At some point I will reread other books by him that I really enjoyed all those years ago; Hothouse, Greybeard, The Saliva Tree. Continue reading