Friday 20th May 2016

A pattern may be developing. After my first chemo session I felt okay for a couple of days and then it was on the Friday that it hit me. I started getting all sorts of aches and pains and I struggled to finish my shift at work. To be honest if sick pay conditions were better I wouldn’t have been there but unless I take my chemo days as holidays I wouldn’t get paid for the first three and I really can’t afford to lose at least three days’ wages every month.

In the build up to my second round of chemo I had been preparing myself for it to be worse this time as I had heard that there can be a cumulative effect with the first round being not too bad but with subsequent ones getting progressively worse.

Having had my second round on Tuesday this week I was pleased to wake up feeling okay next day. By  Thursday I felt a little rough but not too bad. On Friday I woke up feeling hung over but I was sure I could manage work so I went in at 6am as normal and found that, very quickly, I was running behind on the task I had to do that day. My job that morning was to markdown the prices for foods on their sell by date that day. It has to be done by 10am and by 7am I knew that I just wasn’t going to make that deadline.

I was prepared for that possibility and was ready to explain that I was just tired because of chemo if anyone challenged me. However it didn’t work that way. As the day wore on I became more and more tired, but also more and more irrational. Instead of just speaking to a team leader to say that I was really, really struggling I decided to push myself on as I hate saying that I can’t do something. There’s a part of me that wants to be the guy who laughs at chemo, who makes it look like it is nothing, but that wasn’t happening.

Instead I became bad tempered and cantankerous, snapping at everyone around me. Luckily my team leaders and section leaders are a great bunch and I was given permission to leave work early. As soon as I received it I got out fast because I knew that if I didn’t I’d embarrass myself and create an ugly scene.

Because of this I’ve decided that I am likely to just take the days off for next chemo even if it means losing three days’ wages. However, hopefully I could be claiming Personal Independence Payments by that time so I may not have to worry.

Tuesday 17th May 2016

If you are facing chemotherapy, one of the things you may need to be aware of is the emotional impact. Every time you go for treatment there are a load of things that can be playing on your mind. Simply attending a hospital for treatment can be a stressful thing for many people. Hospitals can just be a place of doom and fear for many people whether they’re being treated for cancer or a cold.

There’s also the dread of getting updates on your condition. There’s always a fear of what you might get told, and whether or not there is any kind of news, you are about to be pumped full of chemicals with some potentially nasty, longer term side effects.

Today was my second round of chemo and was an abject lesson in getting on top of my emotions and taking control of my appointment days. My first lesson is that when you have enough people wanting to help you have to be the one that coordinates them. There was some confusion over who was driving me to and from my appointment but I quickly just made a decision and asked my dad to do it.

The other thing I learned is not to be a ‘rabbit caught in headlights’ when I go for my chemo. I have to be honest and say that I am in a state of dread when I turn up at the Beatson. I’m always waiting for worse news, such as hearing that my PSA has rocketed or that I am already showing resistance to the ADT drugs. As well as being on edge I am trying to take in everything that has been said to me and absorb it fully so if things aren’t spelled out I get a little…confused.

Problems started when my doctor spotted that my chemo appeared to be scheduled for next day, rather than that same day as was expected. In order to find out what was going on she tried to call the Macmillan Day Care Unit, where I was to receive my chemo but there was no reply. After a couple of attempts I decided to take the pressure off of her and told her that I had another appointment about 11am and that I’d just come back and check at reception whether my chemo was today or not.

She gave me a slip to arrange my next appointment with her and told me that I’d need to get my usual batch of medication so I asked her if it was just the same as last time – just a case of heading down to the pharmacy and picking these up. She nodded and I then went on my way.

This is where it becomes too confusing and embarrassing to go into. All I will say is that it is a good idea to have the procedure for your day written down and 100% crystal clear.

I’ve learned that my procedure is this:

  • Visit my doctor in the morning. Don’t rush myself and take time to ask whatever questions I may have and to ensure that I have understood them rather than feeling that I am taking up too much of the doctor’s time.
  • When she is finished she will give me a slip to take to reception to make another appointment prior to my next round of chemo. When I’ve done this then wait to attend my current chemo appointment.
  • Go for chemo and if nurse asks if I have all appointments say yes, and if they ask if I have my next batch of medication say no.

As you will gather it didn’t go that way and the day was a bit of a comedy of errors.

The confusion developed when I returned from an appointment with Macmillan Cancer Care Benefits Team to find out if my chemo appointment was indeed for that day and I was disappointed to find out that it had been scheduled for 10am the following day.

Not having had chemo I opted to make my own way home by public transport rather than disturb anyone else to come and pick me up. It took me about 90 minutes to get home and I was barely in my front door when the phone rang. It was a call from a nurse at the chemo ward saying that my docataxel, etc. was ready and they were waiting for me. Exasperated, I explained what had happened and asked if it would be okay if I was back there in the next hour and she said that would be no problem.

I immediately called my dad who came down to pick me up and got me back there within 40 minutes. When they took me into the chemo ward there was one other person there. I chatted with him as they set me up and I even discussed my ‘research’ with the nurse who was attending to me and found that he was quite open to much of what I was saying.

I think my brain was spinning a bit from it all and when the nurse asked me if I had my appointments and drugs I suffered a sudden burst of short term amnesia and caused further confusion. I have to admit that my brain was totally fried. Alison had given me grief over the confusion about the appointments. As well as that I wasn’t fully used to a routine with this and on top of it all my state of mind was affecting my ability to think clearly.

The day was rounded off with an almighty argument between me and Alison over something so stupid I can’t even remember what it was now. When I told her to leave me alone as I had a rough day she challenged that assertion and I finished the argument with the words “You go for fucking chemo then!” before storming off to go and sleep on the couch.

 

Monday 16th May 2016

It’s the day before my second round of chemo. I’m due to go and see a nurse at my local GP’s office to get my second dose of Prostap – the androgen deprivation drug that is controlling testosterone levels in my body.

The past week or two has been largely uneventful in terms of my condition. I’ve handled my first chemo session well and there have only been a few symptoms – an ache in my leg a few  days afterwards that caused me to limp a little, pains in the nails on my fingers and a lot of redness and itching on the backs of my hands, particularly the hand that the chemo drugs were fed into. There was also a little ‘wound’ where the needle went in. It was some kind of delayed reaction as it had taken about a week or two to appear but it healed over the past couple of days

Additionally I’ve had horrible taste in my mouth come and go, affecting the flavours in my food. However it didn’t happen often and in no way affected my appetite or made me nauseous. In fact the anti-nausea drugs I was given to take home with me, after last chemo session, haven’t been touched.

I’ve also been a bit lax with my corticosteroids. I’ve missed doses several times and when I went away for a few days to Edinburgh I forgot to take them with me. While I was there I found that my beard was moulting quite a bit; there were hairs all down my chest and whenever I touched my beard I’d find my hands covered in lots of little hairs. Finally I ended up trimming it for the first time in weeks it started to look a bit thin.

The only real comments I can make about the past week or so is in relation to food. Over a week ago I decided to go online to see if I could find any books to support my research. I did find a hefty and expensive volume on Nutritional Oncology. However the cost for the most up to date version started at £152 for the Kindle Edition while I could get an earlier edition (from 1998) for £14.95.

I was debating with myself whether to buy one of these when I saw a couple of other books listed in the search results for ‘nutritional oncology’. They were written by a Professor Jane Plant – a scientist who treated her own advanced breast cancer with nutrition much to the surprise of herself and her doctors.

Because many of the factors that affect breast cancer also affect prostate cancer she had written about both types. I purchased her books Prostate Cancer: Understand, Prevent and Overcome Prostate Cancer and The Plant Programme: Recipes for Fighting Breast and Prostate Cancer.

As I write I’ve started reading Prostate Cancer: Understand, Prevent and Overcome Prostate Cancer. So far it has given me a sense of hope, especially due to her assertion, on page 11, that “even advanced cancer can be overcome”. The insight it has given me into the weaknesses and uncertainties of conventional prostate cancer care make me feel that there is more to the story than our doctors are letting on.

When it came to reading The Plant Programme I really wasn’t sure. I leafed through it and found some recipes that include eggs, chicken and squid. Some of my earlier reading pointed to a eggs being implicated in driving the development of prostate cancer to aggressive and advanced stages. However I am reserving judgement until I’ve read Prostate Cancer: Understand, Prevent and Overcome Prostate Cancer where she may explain her rationale for this.

Eating out over the past week has been a mixed experience. I went out with Alison and my parents to a local restaurant and the vegan choice was dismal. Alison is determined that I will eat oily fish to get my Omega 3 and Omega 6 fatty acids so when she saw that one of the specials on the menu was mackerel with a beetroot and orange salad she ordered it for me. To keep her happy I didn’t argue and I really regretted that. When the food came it was sparse and bare on my plate. The beetroot and orange salad consisted of a few very thin slices of cucumber and beetroot and there was no sign of any orange. It turned out that she had ordered a starter when I was expecting a main course. I love my food and I felt like crying looking at this pathetic plateful. The waitress must have seen the look on my face and asked me if I wanted another fillet. I said yes and she appeared with another mackerel fillet on an otherwise empty plate. My vegan resolve collapsed completely and I ended up having the leftovers from everyone else’s plates and then having a pint of ale and a slice of cheesecake as I was so irritated with my ‘meal’.

In stark contrast was my visit to the The 78 Cafe Bar where the food was 100% vegan and totally delicious with generous, satisfying portions.

Beetroot and hummus were two things I had never considered as a suitable combination until visiting The 78. For a starter I had Hummus, Beetroot Hummus & House Marinated Olives with Salad and Toasted Pitta Bread. Extremely tasty and could have been a main course in itself.

If you are looking to go vegan as part of your cancer fighting regime and looking for places where you can eat out, or even just looking to find out how tasty vegan food can be or to get inspiration for what you can prepare yourself then you need to give this place a visit.

I was there with Alison along with my sister and my brother in law who had just gone to get checked out for prostate cancer in response to what was happening to me and also the fact that his dad already had the condition. Thankfully he had gotten the all clear.

As mentioned, I had gone away to Edinburgh for a couple of days and during that time I had managed to eat very healthily. In the past when Alison and myself had done trips to Edinburgh there tended to be lots of alcohol and lots of sugary, processed snacks. This time the alcohol was vastly reduced, restricted to a few glasses of red wine for me. Our packed lunches consisted of a lot of fruit, such as cherries, grapes, pears and apples while the odd wholefood pot was purchased from Marks & Spencer.

When I came back home I resolved to start cooking properly. Meals were starting to become a bit of a struggle. I was starting to become tired of microwavable grains and rice mixed with canned, mixed beans alternating with stir fry. So, over the weekend I tried a couple of recipes.

The first was Jamie Oliver’s Vegetable Chilli. It was actually pretty good and Alison loved it.

The second was Lemon Avocado Chickpea Mash which should have been easy to make but I was surprised at how difficult it is to mash chickpeas without the correct equipment. I tried sticking them in a blender but centrifugal force just threw them against the sides of the blender container leaving the blades spinning ineffectually. After some perseverance I got them reasonably well mashed. Next challenge was to find out how to use avocados. Did I need to peel them? I had no idea as I’d never eaten one before.

I was getting so exasperated preparing this that I forgot to add the spring onions and although I enjoyed it Alison felt there was something missing. I didn’t want to tell her it was the spring onions that were a part of the recipe that I had missed.

Anyway, that’s the past week or so. I sign off for the day having just had my second Prostap injection with the next one scheduled for 8th August. My next post will be about my trip to Beatson for chemo tomorrow.

 

Monday 9th May 2016

Over the past week I’ve felt reasonably well except for the usual back pains at work which I was now putting down to muscle weakness due to reduced testosterone. However, I have had some stuff going on with my hands. It started last Sunday (1st May).

After a morning of putting them in and out of cold, refrigerated food displays I came home from work and gave them a wash. As I held them under the tap I could see the back of my left hand (the one that I received chemo into) was all red. It looked sunburned.

I’d had something like this before, just after my first Prostap injection. It hadn’t lasted long before vanishing, but now it was back. Over the next few days the back of my left hand became dry, red and itchy. An angry looking spot of irritated skin appeared over the vein where the chemo needle had been inserted and I got some dry, irritated patches on the right hand too but not to the same extent.

Additionally I found that my fingernails were sore. If I tried to scratch myself anywhere it would hurt my fingertips. Or if I had to open a package by digging my fingernails in to tear it then that would hurt a little too.

I considered contacting one of the telephone numbers I was given in the event of any unusual symptoms but instead opted to keep an eye on it and if it became particularly worrisome then I’d do something.

Earlier in the week I’d bought some hemp oil from Amazon. Me and Alison had been investigating cannabis oil after seeing Dennis Hill’s story of curing his metastatic prostate cancer. We bought four bottles and gave one to my brother in law who has Multiple Sclerosis. One was given to my mum, who has trouble with arthritis. Alison took one for the eczema on her hands and I kept one.

It had been a quick decision to buy it – based on the first review we read on Amazon. A woman who suffered from carcinomas on her face had treated them, much to her doctors surprise, using this brand of hemp oil. That was good enough for us. It was the fastest buying decision I’d ever seen Alison make. “Just get it,” she ordered after I read that review out to her.

On receiving it I mentioned it to a work colleague who knows a bit about these things. He reckoned that it would have to be 10% cannabinoid to be to any good. I went home and looked to see if I could get any more information and found that what I had bought was only 3-4%. Additionally it transpired that cannabis oil and hemp oil appeared to be two different things. This was starting to look like a bit of a dead end.

Alison and myself both decided to give a try though. We both put it on our hands with limited results. Although, as I write, there is some hope that combining it with Diprosone may be helpful to Alison. We also both tried taking it internally but I’m not so sure that I will buy it again. I can’t waste time on things that don’t work.

As we accepted that this was probably going to lead nowhere I read a story on the internet about a medicinal cannabis advice centre in Dundee. I am due to take some holiday leave from work between 8th May and the 19th and I consider taking a trip across to Dundee for a day to pay this place a visit. Me and Alison will be going on day trips while I am off work so that looks like a perfect way to kill two birds with one stone.

Something else that was going on was my mood. I had a vile temper for several days over the past week. I found that many of the minor annoyances in life that I usually ignored were really getting to me – things like work colleagues edging in front of me, not having a locker for my belongings in my workplace and equipment failing to perform properly. I kept it to myself but felt like I was in a barely suppressed rage all the time.

I kept trying to rationalise myself out of this mood but it finally came back to me that I had read a warning of psychological side effects related to the corticosteroids – things like feeling depressed, feeling alone, having strange and frightening thoughts. I looked again over the little leaflet that came with the pills and I considered that I could be getting some kind of low level symptom. Or perhaps it was a moment of reality hitting because I’d lapsed a little in my reading and research on holistic approaches to prostate cancer, which usually kept me upbeat and held my sense of mortality at bay.

On the other hand, perhaps it was frustration at my diet becoming a little boring. Certainly I was getting a better variety of foods these days considering the amount of fruit I was consuming. However meal times were starting to become irritating. I was sick of stir fry or grains mixed with beetroot. I’ve resolved, while on holiday, to try out some recipes so that I can make meal times a bit more fun and interesting again.

Speaking of meal times I got talking to a man with esophageal cancer on Friday. He is a maintenance guy who comes into the shop where I work on a regular basis. Someone mentioned that he is going through chemo so when I see him standing working alone I took the opportunity to approach him and to ask about it. It turned out that he has just finished chemo and he largely had no problems with it until he came off it.

Nervously I asked him if he drank a lot of milk, or ate a lot of eggs and cheese. I was nervous because I am putting so much faith in my dietary changes that if someone tells me that they have been vegan for years yet still have cancer it would shake my belief in what I am doing. I therefore feel some relief when he says that he drinks a lot of milk. With my confirmation bias corroborated I then suggested that milk could be the problem before recommending that he reads The China Study. I then suggested that I could friend him on Facebook and send him some links. He seemed agreeable to that and we took a note of each others names. However, when I tried to find him using a Facebook search there were dozens of guys with the same name. I wasn’t sure that he’d even look the same in his photo as he might have a pre-chemo photo in which he had hair, whereas he was actually bald with very faint eyebrows which were no doubt just growing back in.

Sunday 1st May

After the terrible day I had at work on Friday, feeling ill, sore and tired, I theorise that the corticosteroids I have been prescribed are perhaps a problem.

I try waiting till I come home from work to take my pill and I find that my shift is much easier to handle. Perhaps it’s just coincidence.

Saturday 30th April

Yesterday was very tiring. When I got home and tried to relax I get twitchy legs – something I always get when I am tired. Alison rubbed my legs for me and I started to dose off and I ended up in bed about 8.30pm as I always do these days.

This worries Alison. To her, my inability to stay awake past 8-8.30pm is a sign of me growing weaker. However I see it as my body conserving energy to fight the cancer.

During the night I was up 4 times to piss (as usual) but I struggled to settle each time I went back to bed. My legs and feet were sore and I’ve been getting pains all around my body. I assume it’s the chemo that has done this to me and it’s not the cancer I am feeling.

As I walk Alison round the road to get her lift to work she notices that I am limping slightly and I have to reassure her that it’s just a sign of the chemo. She had read that combined chemo and hormone therapy made many men better but somehow hadn’t realised that this was probably after the chemo had finished. I remind her that classically chemo is a bit rough on the body and that many of those men who it helped had to get worse before they got better.

I have a few errands to do but I resolve to find some time in Costa with my laptop researching some of the information I had previously found but in more detail. I’ve been curious about polyamines and their role in cancer treatment. As always, the science gets me buzzed up and I feel excited – almost too excited – about how useful this information is. I go home and put a chart highlighting which foods to eat and restrict for reduced polyamine intake. Cross-referring it with a chart on apigenins I see that apples, grapes and celery are show up as cancer fighting stars, being both high in apigenins but low in polyamines.

First Chemo – Tuesday 26th April

It’s back to the Beatson for my third appointment there. I’ve now had my biopsy and CT scan so should now have all the information my oncologist needs.

It’s my original oncologist I see this time. She was off on holiday last time I was here and I’m hoping that the appointment is less emotionally fraught than when I last saw her.

My dad comes in with me and the doctor recognises him as he was a regular there for radiotherapy with his own prostate cancer. She explains that, as hoped, my cancer is a fairly ‘standard’ cancer and confirms that we can proceed using docataxel as my chemo drug.

She gets me to sign a waiver saying that I understand all risks and give my permission to proceed. We discuss the risks and I highlight my concerns about nerve damage but also about blood clots.

When I was 12 I hurt my leg in a tree climbing accident. This caused minor damage to a vein in my lower right leg which became progressively worse until the veins looked like a brain or a cauliflower on the side of my calf. I got surgery to remove most of it in 2000 but over the years it has started to get worse again and now looks pretty unsightly but nowhere near as bad as it used to be.

The doctor explains that she’ll have to see it so that she can compare it later for signs of blood clots, if required. I suggest that I just maintain good circulation with lots of activity and she confirms that this is correct and advises me how to spot signs of any problems.

I also mentioned that when working I get pains across my mid-back area which I don’t get when I’m relaxing and naturally I keep wondering if that’s the cancer I am feeling. She explains that because my drugs are suppressing the hormone (testosterone) which gives men their relative strength my muscles may be feeling weaker, making manual labour a little more tiring.

So it’s now just a matter of waiting a couple of hours for my chemo. She asks me if I have any questions. I have several.

First question: Is this definitely stage 4 cancer? The answer is yes.

Second question: Is there a particular name for what I have? She replies that no, it’s just called stage 4 prostate cancer.

Third question: What is my Gleason Score? I gulp a little as she tells me that it is 9. This means that (on a scale of 1 to 10) it’s pretty aggressive.

Fourth question: Is the cancer doing anything in my body right now? Like spreading, or damaging bones? She tells me that it’s on hold due to the drugs I am taking (Prostap).

Fifth question: At my last appointment I was merely told that the CT scan shows swelling in my lymph nodes. I assumed that this meant cancer but in retrospect that wasn’t necessarily a definite assumption to make. I ask for clarification and she explains that although it could be other things the safe assumption is that it is cancer in my lymph nodes. The only way to be certain would be to cut me open.

Sixth question: At my last appointment I think that something was mentioned about my liver and I ask for clarification. She looks at my notes and it seems I was mistaken. I mildly chastise myself for hearing things that were never mentioned and then promptly forgive myself as I was clearly just stressed and not taking everything in.

Seventh question: I am due my next Prostap injection on the 16th May and my next chemo is on 17th May? Should they be so close together? The doctor asks me if it’s okay with me and I say that I’m okay with that if she is.

I also mention the research I’d read about regarding cholestrol reducing drugs which can extend the life of hormone therapy. She explains that there are always clinical trials going on as regards extending life of the hormone therapy. Using combined chemo and hormone is for that purpose and to extend my life expectancy. The mere mention of this sends a little cold shiver through my blood. I always feel uncomfortable when the doctor mentions anything about my life expectancy. I like to assume that it’s not an issue when she doesn’t but mentioning it reminds me that it is.

It’s then off for chemo. I’ve taken the drugs they asked me to take the night before – 4 pills all at the same time, and also 4 of the same pills next morning.

Me and my Dad go to the Gartnavel Hospital Cafe where there is nothing remotely vegan. I decide I’d rather opt for a couple of rolls on sausage than anything with milk or eggs; it’s the lesser of several evils, healthwise.

We then head up to the Day Case clinic where I am to receive my chemo. We wait for somwhere between 1.5 and 2 hours. When I’m called in my Dad goes back to sit in the reception at the hospital’s Tom Wheland building.

I am led into a ward where 5 women are already receiving treatment. A lovely young nurse leads me in and puts me in a comfy, padded chair and starts explaining the process. I was too nervous to remember everything she said but there were a couple of medications administered before the actual chemo ( I will give details in the post about my second chemo).

At one point I phased out as she started discussing hygiene and other aspects of post-chemo daily living. If chemo starts messing about with my duties I’m worried about my hours getting changed. As it is, the ins and outs of sick pay are getting me stressed and I don’t want to have to think about this. I am feeling so agitated and uncomfortable that I wonder if it is a reaction to the drugs but I don’t want to say anything in case it is psychological and it causes them to mess about with or delay my treatment.

I get a hold of myself just in time to hear her advise not taking probiotics. At that point, perhaps sensing something is not right with me, she asks if I am okay. I apologise that I ‘lost her’ for a few seconds and she asks me if this has ever happened before. I tell her that I just think it’s nerves and apologise for being a wuss.

The rest of the chemo is largely me sitting with a tube inserted in the back of my hand as I browse Facebook on Alison’s Kindle, which I have borrowed. As I leave I am given more meds – anti nausea drugs, corticosteroids and the drugs to take the evening and morning before my next chemo. I’m also given paperwork to hand to the nurse when I get my Prostap injection, prior to next chemo, so that I can get an updated PSA.

I feel fine all the rest of the day and into next day although I didn’t sleep well that night leaving me a little tired. Because of this I stay off work and get some sleep during the day.

It was Thursday before I returned to work and everyone is pleased to see me. I had been posting about my chemo on Facebook, as it happened, and many of my workmates had seen the posts. It creates a lot of conversation and I prematurely tell everyone that it was easier than I thought.

By next day I felt a bit rough – not too bad, more like a bad hangover and everything is an effort. I can’t manage a basic conversation and another colleague looks a little perplexed and irritated as they watch me struggle to open a simple little cardboard box. When things go wrong I start to feel like an angry Stan Laurel and there’s a disturbing slapstick comedy about the way I struggle to do simple things. I am in a freezer in the warehouse of the shop I work in and a load of stuff slides off a shelf. As it is all icy it slides back off and falls to the floor every time I try to re-stack it. It kind of reminds me of the kidnapping scene from Woody Allen’s movie ‘Bananas’.

 

This can’t be happening!!!

In November 2015 I got what I thought was a mild flu or a bad cold and like most men I ignored it. Over the next few months it just got worse and worse in between short periods of feeling better.

In January 2016 I finally decided to go to the doctor. The first appointment ended with the doctor saying the ominous words “This could just be a bug or the beginning of a journey.” Unfortunately it was the latter. Right now I’m at the beginning of that journey but it’s a journey in which I plan to fight all the way.

At the time of this first post a lot has happened so I will recap. It’s important for men who are being first diagnosed or who suspect that prostate cancer diagnosis is imminent to know what to expect and what to ask their doctor. At this point I’ve not asked these questions but having just been advised that I am at an advanced stage less than a week ago (on Tuesday 15th March) I am now just getting my head around it all enough to have done some research and, from that, formulated the right questions.

But first here’s the timeline:

November 2015 – January 2016

I get what I think is a bad cold or a mild flu. There are short periods where I feel better making me think I’m on the mend so I delay going to see the doctor. Throughout December I am getting a gnawing pain in my lower back that I just put down to bad posture or similar. By late December I feel really susceptible to cold. I’m coughing a lot and I feel exhausted. I can make myself feel a bit better if I wrap myself up in a quilt and get so warm I start to sweat. I feel thirsty a lot and need to drink constantly. I’ve also started peeing several times through the night and my back pains get worst through the night, keeping me awake.

In early January I go to the doctor’s and get blood tests which show nothing other than the fact that some inflammation is going on somewhere in my body. It’s only because the doctor asked if I was peeing okay that I think to mention that I am up several times each night to go to the loo. He immediately gives me a digital rectal exam (really not as bad as you’d imagine it to be). He sends me off to give more blood samples.

Monday February 1st 2016

I come back in to get the results of the blood tests and I am told that I have prostate cancer. I am stunned but I take the news reasonably well as my dad had prostate cancer and he recovered well. I think I will be the same.

The doctor is surprised as he doesn’t normally see prostate cancer in someone my age (at the time of the appointment I am 49). He asks me if I have any questions. I am too stunned and shaken to think what to say. He arranges an appointment for me on Wednesday 3rd February so that I can go away, gather my thoughts and come back to him to ask questions. I give another blood sample.

He also arranges an appointment for me at the Urology Dept. of Royal Alexandria Hospital in Paisley, Scotland on Friday 5th February.

I go home to tell my partner and she is in bits.

Tuesday 2nd February 2016

Me and my partner do some research on the internet. This is terrifying. I read that pains in the lower back through the night can mean that the cancer is already in the bones and that this is untreatable.

Wednesday 3rd February 2016

I wake up ill. I am throwing up constantly. I can’t understand why. I’ve been ill for over three months. Why would I deteriorate so suddenly now? I wonder if it is because I’ve stopped popping pills to get me through the day. Maybe this is me coming off of them.

I go back to see my doctor to ask questions, none of which he can answer. He actually seems irritated by my questions and I realise that there is nothing really that he can tell me. A pointless exercise.

The only thing I learned is that my PSA is 500. I am shocked at this as my dad had a PSA of 50 when he was first diagnosed and my family were led to believe that this was a very high figure. The doctor sees my surprise at this figure but explains that there is nothing that can be deducted from that; I can’t compare myself with my dad as he was in his mid to late seventies when he got prostate cancer so there’s about 25 years difference there.

Over the next day or two I keep waking up feeling ill – vomiting heavily.

Friday 5th February 2016

I attend my appointment at the Royal Alexandria Hospital (RAH) and I am asked if I have any pains at all. I tell him about the back pains that kept me awake. He looks a little concerned and explains that these pains combined with raised calcium levels in the blood suggest that the cancer may have traveled to my bones. I feel a chill when I hear this but I remain hopeful.

He performs another digital rectal exam and advises that I will be sent for a Nuclear Medicine Test to find out if there is any cancer in my bones. He also gives me instructions for my GP regarding my treatment so that I can begin medication.

I am terrified of what is going on in my body and what will happen if there is any delay so I head straight back to my GP’s office and hand in the written instructions I was given to pass on to them and I ask if I can pick up my prescription that day.

I am issued with a a drug called Bicalutamide and a drug for injection called Prostap. I have to take the Bicalutamide once a day at the same time every day for two weeks at which point I need to go to see a nurse at my GP’s office so that she can administer the Prostap. After that I continue with the Bicalutamide for another two weeks.

During this time a friend tells me about a man who had prostate cancer and that he went vegan after reading a book called The China Study. I don’t pay too much attention to this as I think I will be just like my dad – a few drugs, a few injections and some radiotherapy and I will be back to normal.

Monday 15th February 2016

I go for my Nuclear Medicine Test at the new Queen Elizabeth University Hospital in Glasgow. It’s an impressive place. I get injected with radioactive material at just after 11am and then me and partner, Alison, go to Braehead Shopping Centre to kill time while we wait for it to spread around my body.

In Braehead Alison sees a pair of walking boots she wants to buy me. Normally I’d have said yes but I wonder if I will be here to wear them. As much as I believe everything will be okay there’s always that niggling doubt.

We go back to the Hospital just after 2pm and I get the scans. I’m told that it will probably be a week before there is a written report. They weigh me and I find that my weight is 93 kilos. I will be contacted with results of my test.

Thursday 18th February 2016

I was notified that I needed to attend the RAH for an MRI scan. I wasn’t told about this by my doctor at my last appointment on 5th Feb, but a letter came in to advise me.

I’ve heard that these things can be claustrophobic but I have no problem with it other than trying to stay awake through it all.

They specifically scan my lower abdomen / pelvic area.

Monday 22nd February 2016

I go to my GP’s office to get my first injection of Prostap. I’ve had the drug in my possession since receiving my first prescription on 5th Feb. I bring it with me and a nurse quickly administers it with an injection into the skin of my abdomen and then I am quickly on my way. She tells me to arrange a new prescription of Prostap in early May and come to have it injected on 16th May.

Monday 29th February 2016

I’ve been waiting for almost two weeks for results and it’s playing on my mind. I loop constantly through optimism and pessimism and back. I call the hospital and I am advised that the results of my scans were reviewed late the previous week and I am being referred to an oncologist at the Beatson in Glasgow.

They advise me that I can make an appointment to speak to a doctor at the RAH if I’d like to or I can wait to see my oncologist. I decide that as long as it is all in hand I will just wait.

For the next week or two I hear nothing.

Thursday 10th March 2016

I am at my local GP’s getting a prescription for Alison and I decide to ask whether they have any news on my appointment at the Beatson. On their computers they can see some kind of communication between the RAH and the Beatson about me getting a CT scan – something that I am unaware of.

They can’t shed any light on it so they give me the telephone number for the Urology department at the RAH. The RAH advises me that an appointment has been arranged for Tuesday 15th March at the Beatson. I’m a wee bit annoyed as this isn’t giving me a lot of time to arrange time off work but I say nothing; I’m sure a letter will arrive in the post next day.

But it doesn’t arrive until Monday 14th March – the day before my appointment. I call the Beatson to make sure they weren’t waiting for me to confirm.

Monday 14th March 2016

This is likely to be  the last day I ever consume alcohol. Me and Alison go to the Lord Of The Isles pub in Renfrew. It’s a beautiful, warm day and although I’ve decided to cut down on alcohol I allow myself a wee drop now and then.

Tuesday 15th March 2016

This is the day when everything changes. I attend my appointment at the Beatson and although the hormone therapy I’ve been on is working well and I feel absolutely okay there is some trepidation.

At the start of the appointment the doctor asks me what I know of my condition. I explain that I understand that I have prostate cancer and as a routine check it was investigated whether the cancer has spread to my bones and liver. I explain that there was some concern that some kind of metastasis into my bones was already occurring but my liver appeared to be clear.

The doctor pauses a little and then advises me that cancer has spread to ‘many’ of my bones. Alison asks if it is terminal and the doctor explains that the word terminal is only used when all treatment options have been exhausted and there is nothing else that can be done. She then advises me that it is incurable. I am speechless and for a moment I lose it. I bury my face in my hands and cry uncontrollably. Later on I will look back at this moment and realise that my primary emotion is guilt; I am thinking “What have I done to myself? How could I let this happen?”

Alison asks if this is Stage 4 and the doctor solemnly nods before elaborating that, although incurable, my condition is treatable. I’m really not sure what that means. Previously that word would have meant that I can be fixed but that’s contradictory to what I’ve just been told.

At this point details are a little hazy. I was in shock. I thought I’d just get a few injections, a few drugs, maybe some radiotherapy and recover well, like my dad did, but this news has me reeling. I came away with a strong sense that I should have been coming here with the full knowledge of my condition. I also get the sense that I should have had a biopsy and a CT scan – the results of which my doctor could use to formulate my treatment plan. I get the strong feeling that I’ve just been offloaded by the RAH (a hospital where I’ve had some ‘iffy’ experiences before) and they just wanted me off of their workload.

I am told that recent developments have shown that combining chemo with hormone therapy can be beneficial. It may not normally be offered but in my case I should be strong enough to be able to handle both of these. I had been aware of this option as me and Alison had been doing a lot of research on the web and read about this. It had been referred to as a ‘stampede trial’.

I go home and phone my three sisters to let them know the news. My dad was with me at the Beatson and he got the full brunt of my upset as me and Alison came out of the appointment.

Wednesday 16th March

I call in sick to work next day. My duties that day will be to go round the chilled and fresh department in the shop where I work and look for things that are on their sell by date and reduce them in price. It takes concentration, pace and speed as there is a deadline on it. I know I won’t give a damn about it and that if any customers or colleagues give me any grief I am liable to lose it in some way.

When I call in sick, I get my section leader and he can tell how bad it is by my tone; I can barely speak. He tells me that our team leader will call later on. She does but I have gone out for some fresh air and to think.

I call back and get the shop manager. She knows that I have had some very bad news. So she tells me just to take some holidays that I am due along with a week long holiday that was already scheduled to start on Friday 18th. I can’t fault my bosses. They have been really supportive.

Thursday 17th March

I wake up tired of being this upset. I shake myself off and I sit down at my computer to put a post on Facebook to let everyone know about my diagnosis. Some of my friends offline already knew I had prostate cancer but the hope and uncertainty was that it was localised.

I am overwhelmed by the response to my post. Previously I would have thought there was nothing anyone could say to make me feel better but the messages I got back really lifted my spirits. Amongst the messages was a lot of practical advice: “Go Alkaline”;”Try Cannabis Oil”; etc. Throughout the day messages and into next day the uplifting messages keep coming and meanwhile I review my situation.

During the period when I hoped my cancer was localised I was being fed lots of leads. My dad gave me an article from The Daily Mail (a ‘newspaper’ I loathe) which was actually full of good advice. It made me go vegetarian.

Also a couple of friends suggested a book called “The China Study” to me. One of them knew a guy who got diagnosed with prostate cancer and then went vegan because of this book. Apparently he now looks better than he did before he was diagnosed. The other friend says he met a woman who says she cured her own breast cancer, chemo free, also because of this book.

I speak to my friends and ask about these people. It turns out I can get to speak to the guy who had prostate cancer although I am concerned that his was just localised and therefore far easier to treat but t appears that he was at an advanced stage with prostate cancer in his bones and his lymph nodes.

My friend calls him and lets me talk to him. I arrange to go and see him on Friday morning at his business address. I tell him I will just turn up and wait, reading The China Study, until he has time to see me.

Friday 18th March.

On the way to meet him on the Friday I got a text asking me to call to discuss my availability for a CT scan. I called my immediately and said I was available at any time.

When I get to my destination I am greeted by a pleasant man who, although in his seventies, looks sprightly and well. He explains to me that three and a half years ago he was diagnosed with stage 4 prostate cancer. It had metastasised into his lymph nodes and his bones. He was abruptly told that there was nothing that could be done for him. The doctor showed him a diagram of where the cancer was and pointed to it on his body. It was then explained that he would be passed on to another doctor for treatment options. He was then given the option of chemotherapy or a clinical drug trial and was given a weekend to decide after having given a blood sample to check his PSA levels.

Over the weekend, to try to cope with his shock and fear he binge drank heavily. When he went back to the see the doctor shortly after he found that his PSA had risen from 40 to 100 – a huge jump. He asked the doctor if this could be explained by heavy consumption of alcohol. His doctor said that it probably couldn’t.

Shortly after that his daughter gave him a copy of T. Colin Campbell’s book, The China Study. After reading this he went totally vegan.

Three and half years later he is doing well. He is running a business whereas many people he knew who were diagnosed at the same time had died within months while many others had died over the past few years.

I asked him if he thought that perhaps some men just left their healing to the doctors and just continued with bad lifestyle habits. He felt that this was quite likely as he saw some men turn to drink and become despondent on hearing of their cancer diagnosis.

Even those who perhaps tried to make positive change may have inadvertently been consuming too much meat, milk and eggs (if what The China Study said was to be believed) in the belief that these were essential for a healthy diet, thus offsetting any good their treatment offered and speeding their demise?

I went home with a lot to think about. Over the next few weeks I spend a lot of time researching diet and lifestyle.

Friday 25th March

Still nothing back about a CT scan. When I went to see my oncologist at the Beatson she gave me a card with contact details for one of the nurses there. I call her to see if there is any word on my CT scan. I explain that I’ve had problems with receiving postal notification of appointments in the past. She says that there is nothing arranged yet so I ask her about a biopsy, explaining that there was some mention of a biopsy being done. She sounds uncertain and I get the impression that there is nothing happening in regard to that but she explains that a biopsy should be getting arranged. She confirms a couple of technical questions for me – that the cancer in my bones is actually little fragments of prostate cancer and not actual bone cancer. She also confirms that the CT scan will be for the purpose of checking whether it is in my lymph nodes.

Saturday 26th March

I have arranged to meet with some friends to go and see another friend who has been diagnosed with cancer and has had some surgery but who is struggling a little, emotionally, because she is living alone and doesn’t have much company to support her through her convalescence while she awaits the results of other tests.

One of my friends tells me about her sister who was misdiagnosed with sciatica for months but who turned out to have cancer. She had it in her lymph nodes and died 6 weeks after she was finally diagnosed correctly. There is some discussion on lymph nodes and where they are and this leaves me feeling very unnerved for the next few weeks.

Sunday 27th March

On my return to work I find that I am getting pains in my back and I start to worry that it is the cancer giving me pain. Perhaps the hormone therapy drugs are starting to fail already.

Monday 28th March

My family has decided to get together for Easter Monday and I think that some of them are afraid I will turn up looking emaciated and ill but like just about everyone I meet they are surprised at how well I look. I have been clearly losing weight and yet again I assure everyone that it’s not all down to illness as I have seriously improved my diet – no alcohol; no refined sugar; no cakes, biscuits, desserts and sweets. And I am now completely vegan.

Getting a vegan meal is difficult. I have to opt for a vegetable stir fry. It was actually quite tasty so I don’t mind.

Monday 4th April

I’ve now received details of all my upcoming appointments. I have a CT scan on Thursday 7th April. I have my biopsy on Monday 18th April but an additional letter comes in telling me to go to Ward 28th at the RAH on Wednesday 13th April. I have no idea what that is for.

Additionally, I am already scheduled to go in and see my oncologist on Tuesday 12th April. She needs my CT and biopsy results to confirm the course of treatment to follow, specifically what kind of chemo to offer.

I call my doctor’s secretary and ask her if it is worth me coming in for my appointment on the 12th if I’ve not had my biopsy. She advises me that she will discuss this with my doctor and will call me if anything changes but otherwise to come in as scheduled. I ask her what the appointment on the 13th is for. She doesn’t know, and suggests I call the RAH.

Wednesday 6th April

I get home from work to find my partner, Alison, looking a little upset. It turns out that she got talking to a girl in her work who explains that her dad had a terrible time with NHS treatment of his cancer. Apparently appointments kept getting screwed up and things weren’t getting dealt with. He had to constantly chase things up and he was at one point told his condition was treatable but then subsequently told there was nothing that could be done. He eventually died of his cancer.

This sounds a bit like my situation. I feel that the RAH just offloaded me but the Beatson felt like I should have turned up knowing the full extent of my condition along with the results of a biopsy and a CT scan, ready for me to begin treatment.

The similarity between many of her work colleague’s experiences and mine are unnerving. She has planted the idea in Alison’s head that I my prognosis will be downgraded to terminal in my upcoming appointment.

To add to this she goes on about how it does get better – clearly referring to my imminent death and then to make matters worse another colleague who lost her partner to skin cancer 10 years ago explains that it is something you never get over and that she still cries for him every day. Misery clearly loves company.

Thursday 7th April.

It’s the day of my CT scan. I’m going on my own and I head out slightly later than I should have and I get there just by the skin of my teeth. I am reading a book on alkaline detox in the common belief that balancing pH helps to fight cancer.

When I go for my scan I thankfully don’t have to strip. I just need to remove my upper clothing and put on a robe and just pull my trousers down around my thighs. The machine is a big doughnut / polo mint shaped machine and I am injected with some kind of dye. As warned by one the technicians I feel like I am peeing myself.

It’s a mixed day. I have a few hours to kill after my appointment and I head over to Braehead shopping centre where I have a soya latte, wander aimlessly, thinking and pondering. The sun is out, the sky is blue and I am in a reasonably relaxed and contemplative mood. I have an early lunch in the cafe at M&S and I have one of the tastiest vegan meals I’ve ever had accompanied by a wee tub of pineapple cubes.

I’m pondering this issue of pH and cancer and on my phone I look this up on the internet. It looks like there is some truth in it but the reality is far more complex. Some people suggest that it’s all bullshit as even the smallest variance from optimal pH (7.35) will put someone in hospital. I feel the benefits of the aimless wander but also the element of doubt I feel in something that I hoped was a strong weapon in my fight against cancer.

Friday 8th April

I wake up feeling fairly okay but as the morning continues on I started to feel really exhausted. By the time the end of my shift I feel ready to drop and I find myself wondering if I will be able to manage the 10 minute walk home. It crosses my mind that the CT scan and/or the dye they injected me with have had an adverse effect.

I do manage to make it home and I have another go at calling the RAH. I get through to the relevant person at the RAH to explain what my appointment on the 13th is. It is explained to me that it is a preparatory appointment to explain what will happen at my biopsy. It’s called a pre-TRUS. TRUS stands for Transrectal Ultrasound.

Alison is still a bit down because of the stupidity and insensitivity of her work colleagues and I don’t know how to bring her back up again. I have to go out and I know that if I leave her alone she’ll sink further and further. I can only think to do what I do for myself to bring myself out of a slump of negativity and doubt. I reach for the science. I tell her a few things I read in The China Study and she perks up considerably. I breathe a sigh of relief.

Saturday 9th April

I wake up feeling okay. If it was the CT scan and the dye that made me feel ill it looks like I’ve got over it.

Me and Alison go to Kilmarnock and as is our habit I go for a Costa coffee (soya of course) while Alison visits the local pound shops. While I have my coffee I am reading The China Study it strikes me to look up prostate in it and I have no idea why I never thought of that before. What I read leaves me wondering why over four appointments with three doctors not one of them asked me if I drink a lot of milk or advise me to stop drinking it. I feel excited by the fact that there are more facts and options regarding this than what the doctors know about or understand.

Alison has been coming out of her slump a little but the anxiety is still there. We go to the First Edition pub (soft drinks for me of course) and while Alison is at the loo I read some more. It is exciting stuff. When it is my turn to go to the loo I give her the book and open it at the page on prostate cancer. To give her a bit of time to read I sit out in the beer garden and wait.

When I return she is still reading the book and she is shaking her head. I feel nervous. She is speaking quietly as she shakes her head and I think she is saying “Dire. Dire.” and I wonder if there is something in there that is really negative that I should have spotted.

As I sit down she clarifies: “Diet. Diet.” is what she is saying, “It’s all diet.”

My ploy works. She looks like a weight has been lifted off her shoulders and for the rest of the day she is upbeat and very, very positive and hopeful. I love that book.

Tuesday 12th April

After my traumatic previous visit to the Beatson I’m finally back for an update and to find out what’s happening with my treatment plan. So far I’ve had a CT scan but no biopsy so I’m not sure if they can proceed.

My dad takes me in and when I arrive and hand over the paperwork the nurse asks him if he has been having chemo. She looks surprised when I say that it’s not him and that it’s me.

She takes me away and weighs me. My weight is down from the 93kg when I had my nuclear medicine test to 86kg. That’s about 13 stone, 8 lbs. I explain to the nurse that I’ve dropped 7kg in the past couple of months but that’s because I’ve cut out junk food, sugar, alcohol, etc.

It’s a different doctor this time as the doctor who will be treating me is on holiday. I’ve seen her a few times on Facebook out canvassing for the Scottish Green Party. As a long time member of the Scottish Greens I really like that my doctor appears to have the same green values that I have.

However for this visit my doctor explains to me that my CT scan showed swelling in lymph nodes in my abdomen and around my mid-riff. There is also some swelling in one kidney. However my kidney function seems to be okay.

Something was spotted around my lower right lung that they weren’t sure about but I explain that I had a lung lobectomy due to a large pulmonary cyst 16 years previously. The doctor seems satisfied that this explains it.

Now that we have more information I ask the obligatory question about life expectancy. As was the case with my last visit to the Beatson the doctor looks a little perplexed by the question. I get that impression that there is very little data for people in my specific situation – at an advanced stage at such a relatively young age (49). Most data on the subject will be in regard to men in their sixties and over, who have other serious and/or chronic conditions. All he can say is that it will shorten my life expectancy. By how much he cannot tell.

Finally there’s just one more thing I want to know. Where is the cancer in my bones? The doctor calls up an email and I am horrified to find that it is in my skull, one place I really didn’t want it to be. But it’s also in my neck, spine, scapula, ribs, pelvis, femur and arm. Basically it would be easier to show where it’s not than where it is.

The doctor then tells me what comes next. He gives me a prescription to take  to the Beatson’s own pharmacy. He gives me paperwork for the phlebotomist so that I can give blood. I drop off my prescription at the pharmacy, go to give a blood sample, and then go back for my drugs.

Wednesday 13th April

It’s my pre-TRUS at the Royal Alexandria Hospital today. This is just a quick, preparatory explanation of what’s involved in my prostate biopsy. Nothing much to it. I turn up at Ward 28 and wait outside for a bit until a nurse appears and takes me into an office and explains the procedure. She gives me a bunch of paperwork including some notes to hand in at my GP’s office for them to put in my medical notes. I’m also given some antibiotics, one of which I have to take the night before and on the morning of the TRUS, continuing with them twice daily for 2 or three days.

Monday 18th April

It’s the day of my biopsy. Based on what I’ve read on the internet I’m expecting a needle or two up my arse but I’m choosing not to think about it too much.

I turn up at the Day Surgery unit at the RAH in Paisley and a nurse tells me to remove my trousers and underwear and to put on a robe. She asks a few questions to confirm my details and to confirm that I understand what procedure I am in for.

“I understand there’s a wee bit of swelling on your prostate that we have to investigate,” she tells me. I reply that I definitely have prostate cancer which has spread to my bones. She looks surprised and tells me that I appear to be very young for that. Once I am prepared, ready and waiting to go in I can hear a man behind a pulled curtain being asked the same questions that I was. He is in for a prostate biopsy too. However he sounds older than me and as they go through his medical history it sounds like he has more medical problems than me.

I get talking to him but before the conversation can get too far I am whisked off to get prodded and poked. I am pleased to see that the consultant performing the procedure is one I have had experience of from a small kidney stone I had a year and a half previously. He’s a very pleasant guy and doesn’t talk down to me (although so far none of them have despite my expectations). It’s just that this guy has a particularly pleasant manner.

He asks me if I have any questions and I joke that I have 10 million questions but the main one is that I want to know if anyone can give me a reasonable idea of life expectancy. He explains that he has patients who have been on nothing but hormone therapy for 10 years and have been doing well.

I ask him about diet and, as expected, he is cynical about any claims regarding diet. He says exercise is better and I ask if cycling is okay even though it’s reputed to raise PSA and cyclists are statistically high in prostate cancer diagnoses. He explains that the exercise benefits outweigh the risks.

I then go in for my biopsy. There are three nurses already in there in operating theatre scrubs. I expected this to be a bit less public but when the consultant asks me to lie on my left side with my knees raised to my chest he then puts a blanket over me. I can’t really tell but I suspect that my modesty has been protected.

A very cynical, jaded looking nurse sits in front of me and as the consultant asks me to relax everything (and from this I suspect he means my anus) this nurse starts making conversation. I grimace as I feel a finger going up my arse and I try to return the conversation. It’s not easy.

Then the doctor explains that he is going to insert the ultrasound device which will administer a small local anaesthetic. He explains that I will hear a click as it takes each biopsy sample. At least that’s vaguely how I remember what he was saying. The feeling of things going in and out of my arse were slightly distracting. It’s over quite quickly and is relatively painless. He takes four samples and I don’t feel the first two but the last two I can feel a slight nipping in my penis. Nothing major.

I feel slightly uncomfortable as the doctor applies some kind of lotion or substance to my arse crack and anus with his finger. All the time the nurse maintains that jaded, cynical look as though having no pity for anyone who gets upset over this, not having gone through childbirth perhaps?

I’m then taken back to the ward where I get dressed, have a cup of coffee and have a chat with the nurse who greeted me. Then I’m off home. As the anaesthetic wears off I can feel a minor sensitivity up my back passage but there’s no real discomfort.

Tuesday 19th April

I get home from work to find a letter from the hospital confirming my next appointment at the Beatson. I have barely read the letter and I get a phone call from the oncologist I saw on the 12th. He confirms that the biopsy showed a fairly ‘standard’ type of cancer and, perhaps remembering how happy I looked when he told me my PSA figure last time, he lets me know that my PSA is now down to 15.