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’.