Botswana

As you all know I am pretty much at the end of the line as far as my illness is concerned. Once the scans showed such aggressive progression, my oncologist suggested we go and see my family immediately. So in the middle of my PCV Chemotherapy treatment we jumped on a plane and here we are in Botswana.

When we spent 5 days in Johannesburg at a hotel we were seeing loads of people every day, sitting around in restaurants and to be honest it was pretty surreal.  We were like minor celebrities entertaining visitors at the Mugg & Bean for 10 hours a day.

It was like being on a bloody Ungrateful Dead farewell tour. It is really hard to explain. I was still on chemo at the time and felt terrible but loved seeing everyone. Between Jay, myself and Den, my father-in-law, we should have got some kind of loyalty card from Mugg & Bean just for sheer staying power.

My teeth started crumbling and one even fell out. Jay blamed it on me talking too much. So much for me bragging about my filling-free teeth for 32 years as one dose of PCV chemo and the perfect dental record is kaput.  As you all know I hate people pushing me in my wheelchair but I couldn’t even push myself up a small ramp. Once we had got our act together we waited for my grandmother to come up from Mooi River and then drove out to Botswana. She is also sick with Cancer and undergoing chemo but she was determined to come. My mother is out from Australia and various uncles and aunts are around.

So we came up to Gaborone and we are staying at my Aunt and Uncle, Grant and Siobhan’s place. It is a lovely big house on top of a hill. It is supposedly spring here and the locals are moaning about 30C weather during the day and cool evenings. I’ll take that kind of bitching about the weather any time. They have a disabled bathroom the size of my lounge. They also have made everything wheelchair accessible so I am comfortable here and for those of you who know them and their kids there are no better or more welcoming people. There is a game reserve and lovely restaurant serving £10 steaks five minutes away. So we aren’t exactly slumming it and are have fun burning around the game park down the road.

We spoke to the local Cancer Association lady about palliative care etc and she discussed options with us. It was then that I decided that the best thing for me would be for me stay here and die here. I have bought oxygen tanks, regulators and have nurses on standby when I need them so we are trying to get everything in place for when I become incapable of looking after myself. Obviously this was not an easy decision to make on any level and not one we made lightly. It was also a decision that affects Jaynean hugely and we have discussed it to pieces. However we think and we hope it is the right decision to make.

Firstly, we know there is the possibility I might never see any of you again. That’s hard to take on any level. We all know the writing has been on the wall for some time but that is no substitute for saying goodbye properly if there is such a thing. My uncle said to me that most of you have been saying goodbye to me over the last few months in your own way and I hope he is right. A few friends from the UK have got hold of me and I know it seems harsh not to come back but I never intended it work out this way.

The problem with my situation is that there is no way of saying goodbye properly anyway, as it is not as if I have a specific departure date. Metaphorically speaking, being a Zimbabwean I hope my departure date will be delayed because Mugabe will borrow my plane for a shopping trip and not bring it back for a while.

The good news is that I don’t feel too bad. I am back in action as my chemo has finished and I am determined to get myself moving around. Over the last month or so I lost a lot of muscle in my arms, shoulder and chest. My once-tight watch strap became loose and my wedding ring was falling off. I don’t  know if that was inactivity from weeks of morphine, tumour progression or just chemotherapy. The main thing is I determined to get stronger so I have been forcing myself to get in and out of the car, do transfers, wheel around the shops and do circuits of the house.  Some days I am really weak and some days I am full of energy so who knows.

I definitely know something is wrong in terms of tingling in my arms and fingers. My head and neck sometimes feels a bit weird.  I sometimes wake up with Jay poking my chest to see where I can still feel. The paralysis is definitely going north as I have no feeling below my nipples now. Taking huge amounts of steroids is also messing me up. I have always had a big head but now it is turning into a beach ball – I am really getting the whole Easter Island Statue look. Oh well.

So having made the decision to stay we are trying to sort things out from here. It has taken quite a while for me to get organized to get treatment. I tried several avenues and finally found an oncologist here in Gaborone who is going to source my PCV treatment for me. He is well known to my Oncologist in the UK and as well the Oncologist I was referred to in Johannesburg and is a Zimbabwean guy who seems to have the right attitude as far as the illness is concerned so I am happy with him.

I should hopefully get an answer today and find out whether it is an option or not in terms of availability and cost etc. I don’t even know if I want to go through more chemotherapy. I am taking a lot of alternative cancer fighting treatments as well as my GP here in Gabs is very pro-active with natural therapies so hopefully that will help.

Getting things done here is frustratingly slow but they have everything I need. The difference is that you pay through the nose for things. Blood tests cost £60 and a few days supplies of catheters cost £50 but at least you can get everything here.

One of the things I know for certain is that when the time comes I don’t want to die in a hospice in Clapham Junction which was the plan before we left. In some respects the UK is home but I am an African at heart and didn’t want the last thing I saw to be the Number 44 bus cruising past my window or a couple of youngsters looting the local foot locker.

Leaving the serious stuff aside for a while, Jay and myself have been the recipients of some amazing generosity. Reeve, a friend of my aunt Siobhan has shares in a game reserve and suggested we go out out there so we spent 2 nights in a five star game reserve in South Africa. It is run by some of his mates who kindly refused payment of any kind apart from tipping the staff. This is in a place that costs thousands of pounds per night and is visited by Hollywood celebrities.  

My version of being in the bush is sleeping rough and sadza. But the place we stayed at was ridiculously luxurious. So in the midst of all of this upheaval we finally had a honeymoon. We didn’t get one after the wedding as it was chemo the next day. Check out the link http://www.jamalamadikwe.co.za/ . 

We had a great time and I even managed to get into a game viewing vehicle after getting carried around by the staff. The lodge we stayed in was amazing and the owners, Shaun and Rodney, have made it completely wheelchair accessible in every way which must make it a one of the only private game lodges on earth I can use easily. As you will see from some of the pictures we were spoiled to say the least – I could have stayed there for weeks and not left our lodge let alone go to the restaurant. We had animals outside our window pretty much 24/7 and were the only guests in the whole lodge so we were treated like royalty. A big thank you to Shaun, Rodney and Reeve for giving us a well needed break in the lap of luxury.

I have had a steady stream of people of visiting which has been great. Matt Accorsi, Bridge and her dad came down for a few days and stayed with Nick Beale. Bruno also came through for a few days last week and we spent hours chatting on the porch, plotting world domination. Obviously my family from South Africa has been popping up whenever they can so we have been seriously busy with visitors. So that brings me to the next point. I know it is impractical and impossible for most of you, but the offer is always there if any of you find yourself in Botswana then we can always make a plan.

Otherwise I have been trying to get my life sorted out. It isn’t easy sorting out work, wills, cancelling accounts as well as trying to sort out all of my childhood possessions. I am leaving some of my stuff to some of you and will be in touch over the next few weeks.

The best I can do in this situation is to keep all of you posted about what is going on. Bear in mind Jay and myself are in a complete state of confusion, guilt, denial, depression and any other emotion you choose at any given time because of the uncertainty involved in all of this. This is generally counteracted by the support we are getting and by our decision to be as positive as possible the whole time. Whether we are achieving being positive is open to debate. But as I have always said – you cannot polish a turd so we are making the most of it.

I watched a movie a while ago called The Way Back about a bunch of malnourished prisoners in Russia who escape a gulag in frozen Northern Siberia and walk to India. Through frozen Siberia with no food, through the Gobi Desert with no water and over the Himalayas and eventually make it to freedom sans a few escapees. The odds on surviving that journey are appalling. They beat the odds because they had a fighting chance and that is all you can ask for really. Ironically enough the dude who wrote the book has been exposed for making it all up. In reality the cheeky bugger strolled from Russia to Poland which is no great shakes really.

Apologies for ruining the film if you haven’t watched it, but my point is that I have always had less chance suriving this Glioblastoma then I would have trying the re-enact The Way Back in a wheelchair.  There was never any chance of long term survival or recovery. And I don’t believe in miracles. My faith, if you can call it that, is in my wife, family, you guys and people generally.

My final point is that this is not about me in some respects. My wife is the one gets the short straw in all of this. So does my family. And so do all of you. No-one wanted or asked for any of this. And none can really do anything about it now. So I understand how helpless you feel most of the time. But all of you have provided us with a level of support and friendship most people can only wish for. Some of you have even been smuggling me medication and medical supplies through airports so mates network is working pretty well.

I am not going to get too saccharine about all of this. I am not saying goodbye just yet. I am not going to tell you all how much you mean to me because you know that already. What I am going to say is that wish us luck, pray to your god or just have a drink on our behalf.

So let’s agree I will keep you posted as often as I can and that this is not goodbye.