Nutjob

Hi everyone,

Aah, another Attenborough moment, as we hear the melodic sounds of the spotted tracksuit-wearer, marking his territory by energetically spitting in the street, whilst simultaneously swearing at his pack of tethered dogs....all of which is taking place while smoking a Superking and drinking a can of beer so strong it could strip paint off a warship.

Yes folks, in the spirit of our chaotic lives I am writing to you from Tooting in London.

In the last post I wrote we were thanking all of our mates and family for raising funds to help us stay in Southern Africa and the first thing we do is buy air tickets to rush back to the UK!

The reason for all of this is that I discovered a lump in my groin and after a scan in Pietermaritzburg it was decided it was necessary to remove the offending nut and biopsy it as it could be more cancer. Just my luck...

I keep on being told that it is easily treatable if it is a form of cancer, but that is scant consolation to me as I would rather not lose more parts of my body. Maybe I can sell it on E-Bay or E-Ball - insert your favourite ball related pun or joke here....

The actual operation is apparently straightforward but with my immobility and skin problems, I might need a longer stay than the average Joe. I should go in to St. Georges either Monday or Tuesday for the operation.

The urologist in Pietermaritzburg said that the operation would need to be done as soon as possible so within a week and after a mad panic packing up we drove up to Johannesburg from Mooi River, said cheers to family and friends and before we knew it we were back just in time for the Olympics. 

It has been a case of packing our lives up again, evicting our house guest Ryan in London and coming back to our place. To be fair, the Olympics were amazing and Jay managed to go and watch the open water swimming as well as the road race which was a few miles away from where we live so it has been pretty cool to be in London while it is all going on.

It is great to see my mates and we have found that London seems small compared to the distances we were travelling in South Africa. Going to see my GP takes 10 minutes as opposed to an hour or so. The other benefit of being back in the UK is that I am seeing a range of skin specialists for my collection of pressure sores, which seem to growing every day.

I am also seeing my oncologist at the Royal Marsden soon so hopefully this will mean being scanned and re-tested. According to the prediction made by my oncologist last year I should be dead by now. It is has been almost a year now and I am not going to sit around waiting for something to happen. I have reduced my steroids and haven't felt too much of a positive difference yet. I am taking a lot less than I used to but the side effects seem to be here to stay and are causing me the most discomfort.

Someone helpfully pointed out that I now look like evil Cartman from South Park. You decide.

 

           The similarities are scary...         

We had been enjoying staying in Mooi River even though say what you like about the weather in the United Kingdom the houses are built for the cold, whereas Mooi is seriously cold in winter and I really felt it. My hands and feet never seemed to warm up.

As soon as we left it started snowing so we dodged a bullet again with the weather as I think I would have frozen to death. It is still beautiful in winter as you can see. Yes those are miniature horses running through the snow in the garden. They belong to my aunt and apparently had to live in the kitchen during the cold snap.

 

In the weeks before we left our mates Dave and Natalie came to keep us company at various times which was great and Jay and my aunt Leigh kept us seriously well fed to combat the winter hunger.

So once we knew we had such a short amount of time in Natal we tried to do everything at once and visited Durban, found Nemo at the Aquarium, visited relatives and we were even visited by interesting people from a Spiritualist church who wanted to shout the cancer out of me which is an experience I won't forget in a hurry.

I also found another sign to amuse us that seems to indicate some kind rubber fetish among the bird life in Mooi River. I always knew crows were dirty but wow...

So here we are back in the UK in our little flat. It isn't all bad to be honest as I am glad to be in our space in some ways. Leaving suddenly for a year you forget that you actually had a home. Well I did anyway. We still have unopened wedding gifts, birthday presents and loads of possessions.  

Jay is keeping well and gives me so much of her time and attention so I am really happy she is getting to see her mom who is here working at the moment, and her dad and sister who we have all missed, as well as all of our friends. It is the first time in years we have managed to celebrate our birthdays without spending the day in a hospital waiting room.

Like most people I find it isn't much fun being unemployed, feeling weak and in pain, but you make the most of what you have and I am blessed with amazing family and friends and this is exemplified by my mother, who we shall re-name Lancina Armstrong, who rode 135 kilometres last weekend to raise funds in the blistering heat of Queensland.

For us, it is important to be positive about the situation, make the most of it and then make a decision about our future plans. Next week will be a bit stressful with the operation, but hopefully things will work out and I will be back in action.

Lots of love to everyone and I should be a bit more communicative now I have more regular access to the internet.  

Cue picture of me riding into the sunset......................sorry I couldn’t find one

Just a quick one...

I realize a lot of you want to help us by fundraising etc. The truth is I feel a bit guilty about that because we chose to come out here and kind of see what happens. My mother is raising money by doing a sponsored bike ride soon so I'll send out the details. So basically we are doing fine but of course I realize people are just trying to help but please just let me know your ideas and we'll chat about it before you go and do anything too crazy....

I know I shouldn't smoke but some dude came up to me outside the shopping mall and gave me an earful about smoking and some other nonsense about along the lines of "and you are in a wheelchair."

I know it is a stupid habit but I was in a particularly bad mood so for once I finally lost it. Life is frustrating enough without getting lectures from some random guy. Anyway I have been saving up a big shout and scream for a couple of months now so this poor guy got an earful.

Anyway I found these beauties to really ram in the non-PC way I am feeling at the moment.... Take care and remember do not expect a response anytime soon.

We are going to find out what country we'll be in this week so  wish us luck...

Blog update

Hi everyone - things have been hectic. We are in South Africa at the today but have to go back to Botswana at some stage this week or next month or who knows....

Ss here is my news our news..

As many of you will know my grandmother died on Saturday the 14^th April after suffering a pretty major stroke on the 11^th April.

Ironically we both got sick at around the same time in 2008 when she was diagnosed with cancer. She showed a huge amount of determination and strength throughout her illness, given that she wasn’t ever expected to have survived for so long. If I possess even half of what she had in terms of fight then I will have a better chance than most people do. She still managed to burn around Southern Africa and even managed to squeeze in a trip to the UK in 2009. She was loved by everyone who met her but I am sure the pedestrians of Howick can sleep a bit better as she wasn’t meant to be driving around and one stage admitted that she couldn’t feel her right leg after the cancer spread to her shin. 

We planned to make it back for a family gathering in Mooi River but unfortunately I was pretty ill in Zimbabwe so left a day later than planned and we didn’t get to see her before she died. We had a wake in her memory on Saturday the 21^st for family and friends and the amount of people who attended and volume of messages sent from around the world really brought it home to me how many people she had influenced over her 77 years. She started studying Arabic in her sixties, refused to be called Granny and told inappropriate jokes. What more do you need?

Thanks for the message for those who sent them through.

So where do you start? First of all things the more things change the more they stay the same. I stupidly envisaged coming out to Southern Africa, parking off in the glorious sunshine under an Acacia tree and writing some kind of memoir, seeing visitors and drinking tea and generally trying to fight off this disease or the side effects of the drugs in some kind of genteel way. Of course I was wrong.

Instead it has been constant traveling, dealing with the world of Immigration in various countries and their formalities and or in our case let’s call them deformities. In Botswana the more formal and bureaucratic approach is favoured and but in Zimbabwe it is more chaotic and frustrating.

 So because our initial visa application Botswana was rejected we have moved down to Mooi River in South Africa to stay with my Uncle and Aunt and family while our application is being processed.

In the space of about 2 months Jay has driven well over 6000kms back and forth from Botswana, South Africa and Zimbabwe. My Botswana uncle and aunt’s RAV has been driven to edge of destruction.  We managed to borrow my South African uncle and aunt’s Volvo to drive to Zimbabwe once we realized that we had no Police clearance for the RAV. My wife somehow managed to fit in both my wheelchair and shower chair in the back seat after everyone else either laughed at the idea or just tried to ram everything in. I love the sign at Volvo.

We are staying at my Uncle Kevin’s and Aunt Leigh’s farm in the Natal Midlands. It is absolutely stunning but couldn’t be more different than Botswana in terms of climate – it green and mountainous and is near the Drakensburg Mountain Range. It is a bit of a change from the heat and bush of Gaborone but we are spoilt as we are in a stunning farm house that has been kitted out for wheelchair use so again it easy for us. Here is the view from the front verandah. Don't be fooled though, it was 1C this morning so is getting cold.

In the Natal area there are a lot more medical facilities down compared to Botswana so I have managed to get my pressure sore looked at and get my teeth sorted out. 32 years of no dental work or fillings came to an abrupt end when the lovely dentist was drilling away, only to stop, remove his mask and tell me what lovely teeth I have and that it must be the chemo that is causing the problems. Thanks for that buddy.

The pressure sore on my ankle is still a pretty major issue but we are on top of it but how the medical companies justify charging the equivalent of £200 for a month’s supply of fancy dressings is beyond me! Before you all email me miracle cures for pressure sores, please don’t. 

We have found something that works for us so whilst pouring warm honey covered in seaweed that has been gathered by a three-legged transsexual badger on the wound may be the way to go for some people, we seem to be winning slowly but surely.

The pressure sore is a bit of a beast to be honest and needs to dressed, cleaned and waterproofed. Between that and raising my legs for the edema,  Jay spends at least an hour a day dealing with nursing me!  As well as managing to burn my leg in the shower, burn my foot after getting about 10 minutes of direct sunlight in the car and getting some kind of stomach bug in Zimbabwe I am keeping my poor wife busy. I am starting to get sores pretty much whenever I knock my feet or scrape my skin so I need to be a bit more careful. An abscess was discovered above the sore so there is more drama. This is what a pressure sore looks like! That monstrosity is my ankle.

So since we came down to Mooi River at the beginning of March we have popped up to Zimbabwe to see Jay’s parents and our friends in Bulawayo and then up to Harare for Kate and Mark’s wedding.

It is fair to say that in Zimbabwe things are slightly different but all things considered the people here are still pretty much friendly and retain their sense of humour. Just don’t drive at night or on a public holiday. And remember your reflective yellow jacket, red triangle and fire extinguisher otherwise you will incur the wrath of the local police in no time at all.

Oh yes and remember your USD$1 to pay for the toll roads that are like concrete bubble wrap and seem to a playground for a variety of goats, donkeys and cows that want to smell your bumper at night. But the roads and animals aren’t as bad as the drivers.

Even my Zen-calm-like wife felt the frustrations of Zimbabwe’s roads as we spent ages stuck in jam on our way back from the wedding in Harare after a head on collision caused a massive delay. Some people were trying to cut into the queue to get across the bridge and both of us decided that keeping calm and carrying on was the way forward. We decided that raising our stress levels was pointless. Predictably, queue jumping and pushing in didn’t work as we seemed to be only people not moving.

I lasted about 30 minutes before I adopted the verbal abuse approach towards drivers trying to barge us out the way.

Even Jay screamed at a taxi driver whose approach to his vehicle was to treat his paintjob as some kind of silver from a scratch card and scrape most of it onto other objects. Jay’s stern words obviously had some effect as we then witnessed the same taxi driver crash into the back of someone and few miles up the road. Does that count as instant Karma? Some people are just oxygen thieves.

Zimbabwe has improved a lot over the last 4 years or so but still suffers from constant power cuts and general disrepair after years of economic neglect. But now some (lucky) people can buy food, petrol and even a few luxuries so  it seems to be heading in the right direction. Apparently Harare is now rivaling Tirana in Albania as the resting place for second-hand Mercedes’ from Europe. Is that a good or bad sign? I can’t tell really.

Probably the most disconcerting aspect of Zimabwe is driving around Harare during the night during a power cut and not being able to find the Monomotapa Hotel which is a 20-storey hotel in the Central Business District due to non-existent street lighting.

Jay and I spent most of our time with my wife’s parents Den and Pegs, who have adapted their house in Bulawayo so I can use it without any hassle. It was great for Jay to spend some time at home after dealing with my manic family. My family take the noisy approach to most things and we all mostly talk at once the whole time so to go to the Parks’ was sedate and relaxing even though we limited time in Bulawayo, 1000km to Harare and back and then 4 days travelling if you add up the SA to Zim journey. 

So that is how 2 weeks holiday actually becomes significantly shorter!

I reckon I need a 3 days of rest for each 500kms travelled so I am doomed for the couple of weeks. You know what, we chose to come out to Africa so seeing Kate and Mark get married, seeing my mates Sam, Matt and Bridge, Shelley and Enzo and many others is worth it as I might never see them again. I know I will regret naming people because I will forgotten loads of people.

Lets wrap it up as they say. Guys there is no internet here on the farm whatsoever so please realize I am now unlikely to respond to emails. We have about a 100km round trip down to Howick to my aunt Claire’s olive shop to use her computer in the middle of her office so it isn’t easy to keep in comms anymore. Speaking of olives (or just blatantly pluggint them) if you ever drive past Howick or find yourself in various shopping malls please try Romesco Olives.

So I repeat there is no email.

Yebo everyone and I hope you are keeping well.

We had a great Christmas and New Year in between power cuts and the heat. Jay’s parents were down from Zimbabwe to join us for Christmas and we discovered the beauty and majesty of 30 Seconds, a board game that is more than guaranteed to either start a debate, argument, hysterical laughter or in my father-in-laws’ case, total speech paralysis. We also were playing pretty much in the dark using head torches which didn’t add to the cutting edge aspect of the game.

My sister-in-law Gaylynn also visited which was great and returned to the UK looking brown as a berry as it had been ridiculously sunny. She also managed to be in Botswana just in time for Maya the puppy to get stung in the face by some creature or eat some noxious mushroom so we had major drama with a hyperventilating dog that looked like Mike Tyson had given her a few right handers. Some antihistamine and lots of water sorted it out eventually but it was pretty stressful.

Otherwise I have been doing the usual stuff - trying to organise chemotherapy and get it shipped over to Bots or brought by someone, which can be interesting. Thankfully I found a use for Facebook and the bush telegraph works pretty well. Because the NHS no longer has any “Duty of Care” in my case I now have to source my own drugs. This means hitting the internet and buying drugs from websites that are registered in weird and wonderful places like Fiji....

I managed to get the first part of the Chemotherapy (PCV) administered here in Gaborone. We all sit in a room as the solitary oncologist does his thing, administering Chemotherapy to about 6 people. It all works fine, except the anti-nausea drip is usually given to me and then I wait for 2 or 3 hours before I am given the Vincristine drip. So it makes the anti-nausea drug a little pointless, especially when the woman next to you is eating a pizza....ah well thankfully I am not someone who throws up easily. And to add insult to insult to injury you get charged the equivalent of £6 for a bloody cotton swab so the whole process costs a fortune.

The other two drugs I sort out myself. Anyway because I am a cheapskate I decided to save £200 and buy the 10mg version of Lomustine, so instead of the 40mg version which means taking 5 capsules, I ended up taking 20 capsules one after the other. These bad boys make you feel nice and sick so I sat at my computer and read about the diamond mining industry Zimbabwe on the Internet as I reckoned I might as well give myself a good reason to feel nauseous. I felt like a cowboy downing shots of whisky, except it wasn’t nearly as fun.

Needless to say I have now found a website that sells the drugs in the right quantities, but I am still waiting for them to be shipped to the UK so I have missed my six-week Chemotherapy appointment already. To be honest, I hate taking Chemotherapy so I am not getting too stressed out about it. I have now embraced the Alternative medicine route and have been getting 50,000mg Intravenous Vitamin C drips, eating apricot kernels and have been sent some Cordyceps and Reishi Mushroom spores from my cousin Katie in the UK. Below is my daily diet.

I figure that I might as well try whatever is out there and everyone seems to be full of ideas, so if you have any suggestions of alternative medicines or therapies etc, keep ‘em coming. As long as this doesn’t include paying a Tele-evangelist who promises to cure me by accepting payment via Visa, then I am receptive to most ideas.

My body is still falling apart and I have wounds that just will not heal at all, which is frustrating and my darling wife spends an hour each day dressing wounds on my feet. She has become a wound specialist by default, and slowly but surely we are getting on top of the situation. We have been lucky in that Bex, my Occupational Therapist from Stanmore in the UK has been incredible and sent out everything we need in terms of dressings. My hair is also starting to fall out so hopefully a few industrial size doses of vitamin C will get if growing again.

Talking of hair removal I read that some members of the Amish community in Pennsylvania have victims of attacks in involving cutting off hair that have been perpetrated by, wait for it, The Mullet Brothers. I nearly fell off my chair laughing at that one.

Several weeks after reading that little nugget I did fall out of my chair. We drove 10 hours from Gaborone to Mooi River where my aunt, Leigh and uncle, Kevin have a lovely farm. I also have an aunt, Claire who lives in the area as well as my grandmother who lives in Howick. My sister Kim was over from Australia so it was great to see her too. Anyway I managed to fall backwards, crack my head on the floor and adopt the Lotus Position. My uncle and I thought it was pretty funny, but Jay and everyone else nearly had a heart attack. As you can see I maintain a sense of dignity throughout what I have optimistically labelled my “stunt”. Others have simply have questioned my wheelchair technique or just called me a tool. You decide.

Jay is keeping well and has started swimming regularly to get fit. One of Grant and Siobhan’s friends has a 19m pool at his house which is great for training and means you can actually swim up and down and complete laps. Otherwise Jay is keeping well and we are both trying to make impossible decisions every day in terms of our future. Jay does worry me a bit with her continual (losing) battle against the wilder elements of Botswana. I am not talking about the snakes and scorpions, which thankfully we haven’t encountered, but the various moths, horse flies, mosquitoes and bugs that seem to have agreed at some point that it would be fun to fly at her. The battle continues.

Health wise, I haven’t had an MRI scan since August but then you have to ask yourself what the point of having one is. Firstly they are hugely expensive when you are paying for it yourself. Secondly, do you want to know the bad news? Apart from a massive hole in my foot I feel surprisingly okay given the prognosis in August.

Thank goodness I have such an amazing wife and family, who provide me with unequivocal support. Apart from a few weeks in total in South Africa, we have been at the Buckmaster’s since August which is pretty much six months of me in your house which must become difficult let’s face it. Luckily for them we have to leave Botswana for a little while and are heading down to Mooi River while we wait for our immigration status to get sorted out so they can get their house back for a while at least! 

I want to thank all of you who have helped us over the last six months, whether it is has been bringing out stuff from the UK, posting us supplies, providing us with accommodation for friends and relatives, baking us cakes, making me trousers, refusing payment for medical care....well the list continues. We both appreciate everything as it isn’t easy to be honest, but the last six months has restored my faith in humanity to some degree as some of the people who have helped us don’t know Jay or myself from a bar of soap.

Whilst ending on such a philosophical note I might as well utilise the feel good factor. Is there anyone travelling to Johannesburg in the next few weeks from London who is willing to bring over some supplies for us? Just thought I’d get that in there quickly.

If so please get hold of me on bruceallardyce@talk21.com or on Facebook. Take care.

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

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...