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.

9 August 2011

As you all know I have been undergoing treatment for a Glioblastoma tumour in my spine which involved radiotherapy and chemotherapy. The prognosis was never good as the disease is both incurable and aggressive, but the purpose of the treatment was to attempt to slow down the tumour progression.

Over the last few weeks I have been in a huge amount of pain, first in the tumour area and then more recently in my neck and shoulder area. I couldn’t sleep for a couple of weeks and tried painkillers, acupuncture and physiotherapy, all without much success.  I also noticed that there are areas of my body where I can no longer feel anything and that my chest area was numb and my arms and hands were starting to tingle. So after seeing the doctors a few times I had another MRI scan to see what was going on as the pain was obviously symptomatic of something more serious.

Unfortunately the scans have shown an increase in abnormality, i.e. swelling, that has now spread up to my neck region and that is what has been causing all the pain. So what I am basically saying is the progression of the tumour and related loss of function has been a lot quicker than myself and Jay  expected it to be and we are now pretty much at the end of line in terms of available treatment.

The chemotherapy I was on has now been stopped as it has produced no benefits and just made me sick. I will start a new type of intravenous chemo called PCV which is second line treatment. This means it isn’t likely to be effective either, but it is worth a shot.

Our last hope was to have surgery to remove the infected spinal cord and just cut everything out. The doctors and surgeons discussed this last week and told us on Monday that this isn’t an option because the spinal cord is pretty much diseased from top to bottom. They cannot remove spinal cord in my neck for obvious reasons so the surgery option is now out of the window for good.

So that leaves me with the second line chemo option which I start on Thursday for 10 days. If I am well enough next week I will try and bugger off to South Africa to see my family and friends as I am running out of time to see them. I want to spend time with them before coming back to the UK to hopefully continue treatment and see what happens. The problem is that I don’t know how I will react to this treatment and the doctors aren’t keen for me to leave the country in the middle of treatment but some things are more important than what doctors think.

Thankfully I am no longer in loads of pain as I am taking steroids and morphine so at least I can move around a bit easier and get some sleep. We are both trying to be as practical as possible about all of this but it really is a matter of trying to take each day as it comes as there are no guarantees for the future. I will keep all of you informed if something new crops up, which undoubtedly it will.

Bad News

I have been sending emails and posting blogs containing pretty bad news for the last couple of years, but I never thought I’d have to send one this extreme. Some of you know all of this already, so I apologise for the repetition. On Wednesday we went to see my Neurologist for a tumour grading and were informed that I have a Glioblastoma Multiforme (GBM) in my spine. A quick Google check will show you that it is the worst and most aggressive type of tumour. There is no cure for it but I will undergo radiotherapy and chemotherapy next week for six weeks and take it from there. The average life expectancy is around 12 months. GBM’s are primarily brain tumours but I am one of a handful of people who have it in my spine which makes it harder to treat as they can’t excise something that is so big in the spinal cord. Given that I have lived with this tumour for so long it is assumed that it was a lower grade tumour that has since upgraded itself recently.  It is the first upgrade I have ever got but not one I really want. I will be treated at the Royal Marsden Hospital in Sutton. We were really impressed with them and I had brought a lot of information with me about new treatments and my consultant was aware of all of them and talked me through the best course of action. There is alternative immunotherapy treatment available in Belgium that I am looking into and my family found out about a Swiss doctor, Stupp, who has dealt with thousands of glioblastomas. My consultant says that the Stupp treatment has improved life expectancy and the Stupp Protocol is what I will be following where Radio and Chemo drugs are administered at the same time. So the next six weeks will determine how this pans out. I have a huge amount of testing and MRI and CT scans to undergo before I start the treatment on the 25th so that is keeping me busy. Some of you have been sending me information about weird and wonderful treatments as well as a bit of snake oil salesman information, but hey I have nothing to lose. So I will try the magical Ecuadorian crystals, salamander sweat rub and deranged Sangomas in due course. I will see how the treatment goes and if it doesn’t affect me too much I will try and go back to work to get my mind off things but at the moment I am recovering from the surgery. Removing the stitches was fun, took over an hour and the nurse looked like she needed a holiday afterwards. Otherwise we are keeping positive and trying to get our heads around this. Jay is really helping hugely and we are both pretty resilient people and will give it a good fight,

The human zip lock bag

This is the human version of a back pack. Once this has healed up a bit then I can crack on with therapy.

It is a lot bigger than the biopsy before in 2008.

You'd think they'd be able to identify a tumour if it takes up half of my back but anyway.

Is it a plane? Is it superman? No it's a tumour...Do'h

Hi everyone,   If you have already received all of this sorry. I can't keep up with the amount of texts and facebook messages I have been sending out and receiving.   Anyway I have been having some medical issues that culuminated in me having surgery on the 28/02/2011 to biopsy whatever is growing in my spine. I was then told on 5/03/2011 that I have a spinal tumour that needs some kind of radiotherapy treatment.   They don't know what grade of tumour I have. They are graded from 1 through to 4. Because mine is growing it is more than a 1 and because I am still breathing probably not a 4 but that is as much as I know. So at least they have made a diagnosis, which is more than was achieved over the last 2 and a half years.   I left hospital last night to come home - I am ok apart from the wound on my back that looks like something from a horror movie. I am pretty exhausted but am a lot more comfortable at home.   Once the wound has healed a bit, the stitches have come out and I am feeling a bit better then I will start undergoing radiotherapy for six weeks. This is to try and reduce the size of the tumour and stop it from causing further damage or growing. The treatment will be 5 times a week and I haven't met with the oncologists yet so I don't the exact details of where and when this will take place.   So basically we are still not completely sure of the situation until the radiotherapy treatment has started. Hopefully it will zap the little bugger and that will be the end of it. Now if that doesn't work then they may have to excise the whole thing which would be risky given the size of it. So basically the next couple of months will define how this all ends up for us.   Thanks again for all of your support and messages as always. You are always know who your mates are when things are tough. I think I am going to have a 24 hour nap now...

Yebo

Hi there,

I hope this finds you all well.

First of all sorry for the lack of communication over the last few weeks as we only had the internet installed fairly recently.

For those of you who have been trying to contact me over the phone I am in the process of getting a new mobile as mine is stuffed and only works intermittently so don't be surprised if it rings off.

I have been out of hospital for a month now and I am enjoying a bit of peace and quiet to be honest. It's weird actually getting uninterrupted sleep and not waiting to use the bathroom. That being said, being at home is also a lot more sedate and I am trying to resurrect my post-graduate degree and finish it off once and for all before I go completely insane. However, there is test cricket on so I am enjoying chilling out and relaxing.

I have to be a bit more careful at home as I decided to wash up the other night and filled the sink up with hot water and managed to burn the hell out of my leg. I only noticed I had burnt my leg when it started spasming like crazy. Anyway at least I can't feel the pain but it has left a nasty wound on my leg.

I am still being treated for the embolisms and should be clear after six months treatment. The doctors wanted me to go for regular blood testing but I told them I would just inject myself with fragmin daily rather than spend hours at the hospital waiting for blood tests etc.

We have bought a Ford Focus Estate and it should be delivered in the next month or so. I am in the process of getting driving lessons organized so I can learn how to use hand controls and get out a bit more. I am not particularly confident going out at the moment but I am sure that will change over the next few months.

Jay is well and gone back to school to teach London's future criminals. She took the last few weeks off to help me out and so we could spend some time together. A couple of my mates came round to watch the rugby recently and it was great to just spend a normal day with my friends.

The flat was looking good until the neighbour's boiler broke and wrecked our ceiling. The council want to refurbish the flat and totally redesign our bathroom and bedroom to give me a little more space, which would be great as I scrape my knuckles on the door frames at least once a day and can't turn my wheelchair in the bedroom and bathroom. My neighbours must think I am a total nutter as I scream profanities whenever I get stuck or hit my hands.

So all is going well and I am happy and relieved to be out of hospital and will keep you posted,

Bruce

Leg Operation

Here is a pic of my leg one week after the operation.

I will hopefully be discharged when the leg has healed a bit

Flat

Here are a couple of pictures of the flat,

- I am bored uploading this but I am sure someone will find it interesting

Six months of fun and games

Happy New Year to all of you and I wish you all the best for the new year.

I had the operation on my leg yesterday and the surgeons are confident that they removed the whole lesion or growth. I was under GA and was out for a couple of hours whilst they did their thing to me. Oddly enough I can feel a strange buzzing in my right leg which is unusual considering that I could feel nothing previously.

Now the plan is to start taking Warfarin again to get rid of the blood clots and then I should be able to leave this place. I am really bored of sitting around in hospital doing nothing. Because of the surgery I cannot do any physio and was told to stay in bed but told them to get lost.

So I am up and want to get out of here asap as I honestly feel that I am taking up space for other people who need the care more than me. Every week there are one or two new admissions of people who have generally had accidents or have diseases. It gets a little depressing watching distraught relatives and people who have had their lives shattered.

The nature of spinal cord injuries is that no-one really knows what will happen in the future. One of the patients was unable to move her hands and legs but within one month is walking without the hint of a limp and no damage whatsover once the bruising in her back had gone down. She feel out of a 3 storey window and landed on her back.

This is compared to a man who twisted his neck when he heard his doorbell ring. He is now a complete tetraplegic who needs 24 hour care. He somehow aggravated the veterbrae in his neck and irreversibly damaged his spinal cord.

So that doesn't help put things in perspective when I am sitting here undiagnosed. The main thing is that I haven't got any worse considering the doctors don't know what is wrong. I am still supposedly 'sick' but I could go to a coagulation clinic closer to home to get my blood monitored rather than sit around waiting for blood tests - that is why I am anxious to get out of here asap.

I am meeting with my bosses tomorrow for my six month review - at least I have a valid reason for not being at work. Some people take stress leave for six months if their cat dies!

Yep as of yesterday it has been 6 months since I stumbled into St.George's thinking I'd be out in a day or so. I had tickets to go to watch the England v, SA test match and was really concerned about missing that more than anything else.

So I celebrated my stay with an operation and some general anesthetic.

I really appreciate to offer of £ to help with wheelchair and adaptation costs and I am in the process of setting up an account so I will be in touch with all of you who have offered financial assistance.

So hopefully I am finally reaching the end of my stay in the NHS world and will celebrate with a couple of beers (and accompanying catheters) in my flat with Jay.

The end is near

Finally after 5 months in hospital I might just be going home.

Obviously I am disappointed that the doctors have never been able to figure out the cause of my paralysis, but I was told from day one that the inflammation in my spinal cord was so pronounced that any damage would be permanent.

But aside from the medical angle, it will be great to be out of a hospital environment and into the real world.

Jay and I now have a one bedroom flat with an adapted bathroom. It is really tiny but the good thing is that the kitchen has been lowered so I can do the cooking and there is a decent ramp leading up to the front door. The flipside is that it is filthy, has no flooring and the kitchen has nothing in it so there is a load of work to be done before we can move in. Jay's folks have volunteered to help us get set up and hopefully can take some of the pressure off Jay as she is working up until xmas.

My wheelchair is in the process of being delivered and my GP is writing up my prescriptions for the 15 odd drugs I take daily and for all of my catheters and that kind of stuff. It is going to cost a fortune but I have already started harassing the people here to get me a prescription exemption.

The only real problem I have at the moment (ha ha - apart from being paralysed) is that I suffer from really bad spasms and in the mornings I simply cannot move and have to be strectched into shape before I can get up. Hopefully an increase in drugs will make my legs get 'floppy' and mean that I can get in and out of bed and the car without fighting my spasms so much.

So hopefully we will be in situ at our new spot before xmas and I will have to get used to being in a wheelchair in the real world. London is pretty crap to wheel around in as the pavements are all at an angle and only the Jubilee line is wheelchair accesible so I need to get a vehicle organised pretty quickly. The chair my local wheelchair service is giving me is basic and pretty heavy so I need to but my own chair pretty soon. Would you believe a basic lightweight chair costs £2500? You can buy a decent car for that price.

But it is all looking pretty good to be fair and I can't wait to get out of hospital and away from some of the moaning patients I share a bay with. There is nothing as galling as hearing a fellow 'inmate' complaining all day about how hard the physios are pushing him when he can walk, albeit with a slight limp when some of us will can't even use our stomachs to sit up straight.

I volunteered to give him a head injury to even things up and he has started to keep quiet recently.

My mate Stuart, who cannot use his arms and legs and is on a ventilator for life as a result of a rugby injury, hit the nail on the head when he said that is always the people with the comparitively more minor injuries and disabilities who complain the most.

So whilst my stay at Stanmore has been beneficial and the staff have been excellent my fellow patients have begun to piss me off big time, which is a sign that I have been here for too long.

I will let you all know what is happening when I leave.

Thanks for all of the messages and support as usual.

Bruce

Nobody knows

Sorry for the silence for the last three or four weeks but the old ways of the NHS are hard to figure out sometimes.

I was told sometime in October that I would be going to the National Hospital for Neurology and Neurosurgery in Central London for investigations 'in a couple of days'. That weekend myself and Jay were going to spend the weekend at the Graham Hill unit, which is a purpose built flat for wheelchair users. We were the both excited as it would be the first time we could spent time together in 110 days.

You know what happens next.

I was told I had 1 hour to pack and was transferred to the other hospital on a Thursday and over the next 4 days had one blood test and met with my consultant once, so there was hardly a rush to get me there.

I was also told the only reason I was there was for a 'couple of tests'. 3 and a half weeks later I returned to Stanmore.

The doctors at the hospital itself were extemely switched on. My consultant Dr. Manji was excellent and referred me to several specialists in various areas.

Obviously the first issue was the ascertain the growth of the lesion and when the operation was to take place. I went for a PET scan which is the latest, greatest scanning method and involves radioactive isotopes being injected into the body to highlight areas of inflammation. It showed that I have inflammation of the spinal cord, which we all knew months ago. Bit of a waste of a £1000 scan but at least there is no inflammation of the brain.

So the registrar, consultant and the surgeon, Mr. Casey http://www.uclh.nhs.uk/GPs+healthcare+professionals/Consultants/Mr+Adrian+Casey.htmall met and decided that surgery is not the answer.

They said that there was no clear evidence that the lesion had grown to such an extent that surgery was necessary and unavoidable and that I should be scanned in a few months to see what has happened in terms of growth. The surgeon said the risks of further spinal surgery were so great that surgery should be a last resort.

So as it stands they are not convinced the lesion has grown and don't want to operate. I will have an MRI in a few months to see if there has been any change.

The other issue was whether the inflammation was caused by an infection.

I met with Prof. Chiodini http://www.uclh.nhs.uk/GPs+healthcare+professionals/Clinical+services/Pathology/Professor+Peter+Chiodini.htm
who is a parasitologist and we went through the bilharzia angle. I finished taking all of the bilharzia drugs and they didnt seem to make any difference. He thought the dose I took was way too high but said that if any parasites were in my body they were definately dead now. I had loads of blood tests to look at other infectious causes. I also had a lumbar puncture which didnt come up with anything revelatory.

So most infectious diseases have been ruled out, but as there are thousands out there I will continue to be tested.

I also met with D. Scott http://www.uclh.nhs.uk/GPs+healthcare+professionals/Clinical+services/Infectious+diseases+(Hospital+for+Tropical+Diseases)/Infectious+Diseases/Dr+Geoff+Scott.htm
who specialises in TB and it was decided that I continue with the TB treatment until it is finished in January.

On a brighter note, they seem to have ruled out cancer and they are convinced that it cannot be MS.

After being the subject of loads of tests and investigations, the doctors at Queens Square decided they don't have a clue what is wrong and optimistically told me to wait and see what happens in terms of my body.

I haven't made any improvement whatsoever and the doctors have done as much as they can so it looks like it is the end of the road in terms of diagnosis so I need to focus on my rehabalitation.

Otherwise I am happy to be back at Stanmore and the next step is to organise a place to live.

The Wandsworth Occupational Therapist went to the house at Lucien Road and decided I can live in the front room until a suitable property is found which is not ideal as I will have to eat, sleep and s**t in one room for god knows how long. So that is next big hurdle for me to overcome.