To Chemo Or Not To Chemo? That Is The Question

Subsequent to my last post where I had agreed to chemotherapy, I later discussed this with Denise and looked at the pros and cons. I decided in the end that the potential downsides of chemo seemed to outweigh the possible good.

One important thing going for me at the moment is my positive attitude towards dealing with the cancer. The thought of the possible side-effects of the treatment – feeling very unwell and compromising my immune system – in relation to the possible gains – a few months at most added to my life expectancy ( the likely prognosis) – didn’t make chemo seem the right thing for me. I felt strongly that my positivity would be compromised. These were all important factors in my decision not to go ahead with the treatment.

We phoned the hospital and their response was immediate. We had several strongly supportive phone calls with the receptionist, chemo staff nurse and one of the lung cancer nurses. The receptionist made an immediate call to the staff nurse and all of the actions we needed were arranged very quickly. Both nurses gave me a lot more information so I could make a more informed decision. They suggested and then set in place a set of practical and reassuring steps. The chemo start date was put back a week to give me longer to consider and an appointment was arranged with the oncology doctor within the next week so I could have an in depth discussion.

At the meeting with the doctor the feeling was that everyone would support me in whatever I decided. The doctor said that as long as I was well enough I could begin the chemo programme at a later date if I changed my mind ( I do understand that sooner is better for this). She stressed that I would be offered the same additional palliative care whether or not I went through the chemo.

Our good friend, Kay, took me to the appointment and sat with me through it, helping me to feel more steady.

I strongly feel, that if this is the way the NHS functions then we need to fight to save it because, in my experience so far, I have been informed for making decisions and supported in finding what I wanted and treated as an individual and not a disease.

When I got back home Denise said my mood was much lighter and more buoyant. Like the hospital, my family, Denise, Matthew, Sam and Anna have all been clear about supporting whatever I decided.

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.


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.


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.


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.


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.