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.

Where do we start? It has been a long time since I communicated with a blog or email to everyone.

A lot has happened in the meantime, and I have seen so many people in the last three months that it sometimes feels surreal. The road to the airport has been so well travelled that we should get some kind of priority parking and plate of canapés every time we rock up. When I say we, I actually mean my lovely wife, Mrs. A, who does the 7.00 am flights. I may love my friends but getting up at 4 in the morning to be ready is a bit of strain. But we have said hello and goodbye to so many people over the last few months that we had to sit down and work out some kind of rogue’s gallery.

We have a load of pictures of Family and Friends that appear on the right, and some wedding pictures in a slideshow a bit further down.

Talking of taking a bit of strain, there is obviously ‘the elephant in the room’ so to speak. Unfortunately that’s me. I am not feeling a hell of a lot worse (I think) since I left the UK but in 3 months since I left the amount of steroids I have been taking has really stuffed me up and my body is definitely degenerating.

I take something called Dexamethasone which is a strong steroid and immunosuppressant. It is not like an anabolic steroid that pumped up budgie-smuggling bodybuilders take, but something to stop the swelling in my spinal cord and prevent the cancer from spreading. So it is basically an anti-inflammatory and is 30 times stronger than cortisone.

The problem is that even someone recovering from major surgery from let’s say a brain tumour would only take 4mg or so for a few days.

I have been taking 10mg a day since the 5^th of August so I am some kind of medical guinea pig. The side effects of taking steroids have become worse than whatever the cancer is doing to me (which is still a mystery). It has made my head swell up like a balloon, so the Easter Island head thing is getting ridiculous. I have pretty much every side effect known to man. I will finish a blog entry about Dexamethasone if you are interested that I will put up at some stage.

So we have been dealing with that. I am waiting to see what the doctors say about reducing the dose of roids. You can’t get actually get the drug here which doesn’t help but I will get some sorted.

Speaking of not getting drugs we have had a major struggle getting the chemo treatment as well. I was meant to start my PCV chemotherapy back in September and was told that the three drugs I needed were readily available. Then I was told one of the drugs was unavailable here but the other two could be sourced.

After speaking to endless people who said they could get them here we gave up. “Yes” actually means “I don’t know” with some people. We ended convincing The Royal Marsden in the UK to prescribe what I needed and half of them were couriered by DHL to Botswana.

So we waited and waited and then after screaming at various people in Botswana we finally found out that the package had stopped in Amsterdam and has never been seen since. I suppose drugs going missing in Amsterdam isn’t something that should surprise you, but I hope whoever decided to help themselves to my drugs will be projectile vomiting and generally falling apart because PCV certainly isn’t what you’d call recreational.

So we tried again and poor Caroline Gower had to go back to the hospital again and get some more and after an epic journey thanks to a visiting Saskatchewan Zimbabwean, Gus Chambers, my drugs arrived and I finished doing my chemo last week. We have done everything African style. We found the only oncologist in Botswana to administer the drip and did the rest of the treatment ourselves. Between my wife, aunt and myself and various other people we have treated infections, pressures sores, foot infections and pretty much everything else that crops up. The point is that unless you take charge of your own situation, relying on outside medical help is pointless. So the chemo is finished and I managed to survive it.

This seems to require queuing in lines in a brand new building that is manned by about three people. Sometimes the longest queue is the one where you stand in a line to get a ticket in order to find out which other queue you should join. Once in the right queue it can mean 5 hours of waiting. So it would be fair to say you need a degree of patience to get things done.

Don’t bother phoning any of the numbers they give you. It took one person 7 minutes to get my phone number right in order to call me back which never happened. I ended up phoning some random Immigration guy and asking him if would like to spend all day at the shops without access to a toilet. Yes I finally played the “I’m in a wheelchair” card and he relented and he checked the system and said our visas were approved but had one final check to be made which turned out to be to be a  broken printer.

So even when the visa was approved Jay still had to take a ticket and wait 5 hours. So there has been a lot of blood, sweat and tears for what turns out to be a little sticker but we are just happy we are legal visitors and to be fair at least it is all legitimate unlike some African countries.

Jay has adapted to Botswana driving really easily and has even identified various types of drivers to watch out for, the prime example being those who have one arm continuously out of the window. The typical arm hanger usually drives an early 2000’s Japanese sedan and of course hangs his right arm out of the window.

Be warned: This is not a distress signal or some kind of indication to pass, but a warning sign that said driver might as well be using the other arm to eat KFC, whilst weaving across the road and having a chat with his mate. Thankfully Jay’s feline like reactions behind the wheel have kept us alive so far.

So in between trying to keep the wheels rolling with chemo and steroids, I have finally relented and take loads of natural supplements and I am starting to a course of Glyconutrients that my local GP swears by and will try intravenous Vitamin C drips and various other alternative treatments I swore I would never take.

Being a man of science (that means I have read a few books and can use the internet) who is sceptical about even taking Multivitamins, I have now decided that I have nothing to lose and might as well give the world of alternative medicine a shot. The problem is that along with the drugs I take just for the paralysis issues I now take the grand total of 37 individual pills per day which isn’t easy.

In our situation you have to wipe the slate clean every day. I have good day and bad days, but between Jay, my family and myself we try and deal with everything in a practical way. Some mornings I rocket down the wheel-chair ramp like a locomotive and out of the house and people keep away from me for a few minutes/hours.  

This could be because I have been unable to sleep because of the drugs, pain or spasms. Or it could be that it has taken me four hours to get up and ready. The point is you have to try and ignore the bad stuff and just get on with it after a cup of coffee and smoke.

We have also managed to use the bush telegraph to get pretty much everything I need in terms of daily medication and paraplegic products from the UK that usually end up in someone’s suitcase. My mate Tim had a suitcase full of catheters that travelled with him from London to Ethiopia for a week, then down to Johannesburg and then up to Gaborone. We have also had catheters travelling from London to Livingstone, via Bulawayo then down to Gaborone. Basically we have awesome friends and friends who have helped us out without batting an eyelid.

Grant, Siobhan, Calum and Jack haven’t evicted us from their lovely home and we try and feed them a good meal once in a while to keep them from showing us the ramp. We are on a bit of a stand-up comedy vibe at the moment and have joined the shrine of Bill Bailey and Ricky Gervais.

They also have a great group of friends who we see often and who have helped out a lot so we are in good hands. So we not only have other family members pretty much ever-present, but also friends visiting from all around the planet. This is the best part of my situation in some ways. We are constantly busy.

I am not well and that is a fact but shouldn’t stop any of us from having a great time when we are together. I have been lucky enough to see some of my best friends and most of my family over the last three months and that is better for your mind and motivation than anything I can think of.

So that is the state of play really. We are legally here for a while longer; I have finished chemo, attempted to communicate with the outside world, my wife hasn’t found a wheelchair accessible cliff to push me off and my family haven’t evicted me. So all in all, things are looking relatively peachy.

We plan to take a trip to a wedding in Magaliesburg, South Africa in December and then take it from there. We might even squeeze in a trip to Johannesburg next week if we can get our act together. Again I hope you are all well and we do and try and communicate with everyone as best we can.

Have a great festive season and I have no idea when the next mass email will be.

Love,

Bruce and Jay