We have just got back from 3 days in Johannesburg going to a wedding and seeing friends and I have finally got around to sending this blog post out now we have a bit of time.

You have to read the next bit in your best David Attenborough voice “If you listen carefully and keep very still you can hear the squeak of the wheels as the disabled man nervously edges towards the road. Paraplegics are nocturnal animals who pose great danger at night to drivers, but thankfully a simple sign has reduced their fatalities considerably. Unlike the lemming, most Paraplegics can read signs so this kind of brief migratory behaviour is not fraught with the same danger.”

First of all you have to see this to believe it. This is on the side of the road in middle of nowhere outside Lobatse.

Anyway that aside, one of the most common things people ask me is how I am feeling emotionally and physically dealing with my situation. It is a natural thing to ask someone who is sick, especially someone who is suffering from something that is a bit weird and wonderful.

The problem I have I cannot answer them properly. I really cannot explain how I am feeling because my brain is moving at a million miles an hour.  At 7 in the morning, I take 14 tablets with my breakfast to start off my day with a pharmaceutical bang. By the time I go to bed I have had around 40 pills, which now include loads of vitamin supplements and various other things to boost my immune system.

5 of these pills I take are steroids. These are to stop the swelling that the cancer is causing and therefore reduce any more pressure on my spinal cord.

I first starting taking a large dose in August, which was the first type of chemo failed and I was told that I had weeks or months to live. Remember they always say that to people. I think is like a disclaimer just in case a patient taps them on the shoulder years later in the local bar. Anyway we obviously were shocked and I started a high dose of these pills.   

A hospice worker from Trinity Hospice in Clapham called Brendan came to see us in London to discuss our situation with us and talk me through what they did and basically offer me a room when end finally comes, which in itself is something we hadn’t really thought about.

From what I had heard from friends and family, hospices and hospice workers are one of last vestiges of what is good about humanity in terms of what they do and the people that work there.  Brendan made sure we sat down, had a cup of tea and he talked us through what was going to happen when I could no longer be at home with some kind of nursing care.

For those of who know Jay and myself well you’ll realise that we posses what is known as a “unique” sense of humour.

We didn’t get married for a long time for practical reasons but we always knew we were committed to each other. So when someone asked Jay why we weren’t married yet she would put on her performance. Jay would look dolefully at them and say, “Well he hasn’t asked me yet.” Cue embarrassment. And the same thing with me when asked; “I always said I’d marry a blonde. Have you ever seen Jay?”

So when poor Brendan asked me how much Dexamethasone I was taking I told him 10mg a day. A safe dose is about 1,5- 2mg per day because of the long term damage to your kidneys, and of course the long list of side effects.

So he looked with some sympathy at Jay and said; “My goodness that’s a lot, have they prescribed any anti-psychotics yet?”

Stupidly my humour filter failed me. Most people have the humour filter, which is essentially the inbuilt device that stops you from saying inappropriate things at inappropriate times. Must be the drugs, surely? I cannot even blame them as my filter has never worked.

I said “I don’t need anti-psychotics. Don’t worry, I only hit Jay in the stomach so no-one can see the 

bruises.”

Granted that’s bad enough, but clever clogs here didn’t throw in ‘the I’m joking laugh’ or look at his wife and both smile in a perfectly choreographed way that would indicate we performed this kind of tomfoolery often . 

So Jay did what anyone would in that situation and said, “No, no he’s joking.”

Of course the old denial makes it look worse. Cue a brief tumbleweed moment where the tea cups were clinking. Anyway once we convinced the poor guy Jay wasn’t abused and I wasn’t a total nut job it made me realise I was taking some pretty powerful stuff!  I fear he still may think I am a bit nuts, but by the time he left we were all laughing which is usually a good sign.

I’m beginning to think I’d rather take a course of starved leeches or an African crushed mopane worm and battery acid combo because the drug I take, Dexamethasone or Decadron is causing me some serious issues.

And by steroids I mean an anti-inflammatory rather the anabolic body-building stuff which is probably a bit too late for me to try considering I have 20% of my body left that actually works now.

Here is a list of the side effects I have:

•The old swollen head thing. Shaving is becoming expensive with such a wide expanse of a face. I look like one of those Easter Island statues.
•Increased appetite leading to significant weight gain.
•Immunosuppressant action which is why I keep on getting sick.
•Psychiatric disturbances, including personality changes, irritability, euphoria, mania – these are quite hectic as you cannot control your emotions sometimes. Luckily, I am always irritable so most of the no-one notices.
•Edema which means my skin is turning into putty due to extreme fluid retention, and my legs have swollen big time. So if you press it hard it makes an indentation as you can see from the picture. I have a few mosquito bites that literally leak water out – I could hang my leg over the herb garden and use it as an irrigation device.

•   
• Increased intraocular pressure, certain types of glaucoma, (serious clouding of eye lenses) – Sometimes I can’t actually read because my eyes cloud up and shimmer. This is probably the worst for me as I have intense pressure in my head sometimes which is probably the cancer and drugs tag-teaming.
• Dry scaly skin, Acne, impaired wound-healing, increased sweating, thin fragile skin, thinning scalp hair.      Yep all of these. My blue-steel pout for the camera is being challenged.

There are loads of forums on the internet of people who are taking dexamethasone. Here are some are their comments to give you some idea:

“I feel out of control, face/lips numb, shakes, uncontrollable crying, nerves shot, feel jittery”

“Hallucinations, insomnia, increased appetite, fear, heart palpitations, losing control, anxiety, sweating, rash, vision problems”

“Racing thoughts, my type A personality got uncontrollable, demanding 10 things at once, major anxiety attacks mostly in the morning when the drug was wearing off and I couldn’t function well, face and neck swelling, gained 25lbs first month."

So it is pretty powerful stuff. Anyway apart from trying to shock really nice people from Hospices, I am still on the Dex and can’t really see a way out. We will try and reduce the dose so there is a happy medium between the steroids and the cancer symptoms and take it from there really.

So how am I feeling physically and emotionally?  Honestly, your guess is as good as mine. Unfortunately the only drugs that seem to work are the ones that cause the most problems. The good thing is I am back in one place for quite a while and will start reducing my dose and see what happens. 

As they say below.

Have a great Festive season everyone and we will try and be more communicative next year. And please look out for wheelchair users when driving at night.