Septic Boy

Hi there,

I hope this finds you all well. By now some of you would have found out about my last six weeks or so from Jay sending out information.

Six weeks ago we decided that I would go to Trinity Hospice for some respite care so I could have some medical advice and Jay could have some rest from having me at home for twenty-four hours a day. I have been bedridden due to the pressure sore since August the 4th and that is quite trying for both of us, especially with my ongoing psoriasis issues.

So I arrived at the Hospice at lunchtime on Monday 23rd September.  I had a general check up by the doctor on duty and all was fine.  By later that evening I started to get a bit of a temperature.  By midnight I had developed a severe fever and uncontrollable shakes, and was sent straight to St.Georges Hospital, Accident and Emergency. By this stage I had gone into septic shock which meant that the infection had started to interfere with my organ function.  My blood pressure dropped to such a low level it was preventing my organs from receiving enough oxygenated blood and my heart rate was through the roof.  They worked on me in A&E until the early hours of the morning when I was then transferred to ICU.  By this stage my kidneys and stomach were shutting down but they continued to dose me up with huge amounts of IV antibiotics and a variety of other drugs.  Eventually by late lunchtime on Tuesday I was beginning to respond to the drugs.  

We then had a few more stressful days where I was pumped full of more antibiotics and had loads of medication to lower my heart rate, raise my blood pressure and oxygenate my blood. Essentially it was touch and go whether I would make it, and thankfully I did with the help of a load of ICU doctors and nurses who do an amazing job.

I spent a week in the Intensive Care Unit going slightly crazy and had a touch of paranoia, delusions and confusion which didn't help things. Apparently ICU delirium or psychosis is not that unusual, but I didn't realise that as I was hallucinating and thought that everyone was out to swiss-cheese me. I was so determined to get out of there so I was happy when I got discharged back to the hospice the following Wednesday.  Unfortunately, I got a fever again and landed up back in hospital the next day for another week.

After that I went back to the hospice where I was put onto another dose of IV antibiotics for seven days as I was still showing signs of infection.  I spent a few weeks there and I am now back at home after five long weeks of hospital and hospice stays. Thankfully everything has stabilised for me and whatever caused the sepsis has gone. They never figured out whether the pressure sore caused it or whether it was an infection from somewhere else, but it was pretty scary nonetheless.

So now I am back to square one after setting another interesting challenge to the medical community to keep me alive. My pressure sore is looking less horrific and hopefully it will improve so I can be up before Xmas as I am going a bit nuts being in bed all the time. I don't know what's next but I would like a bit of a break.

Hope you are all well and keep in touch.

Under Pressure.....

Hi everyone,

Thanks for the birthday messages for myself and Jay,

The day before my birthday I ended up sitting in my shower chair for 12 hours and my body gave me a non-refundable gift - a Grade 4 pressure sore on the back of my leg. I have a 14cm gash that has to be dressed every day by either Jay or the nurses and I have to lie in a way that takes pressure off the area.

The really scary part is that I can't feel a thing, but there have been a few audible gasps from the nurses when they first saw the wound, which is never a good thing.

It is really disheartening as we had worked so hard to get rid of the wounds on my legs. However, I am completely bedridden and will be until these things start healing. So far it has been over 300 hours lying in bed on an air mattress that seems to be built for discomfort.

I can't believe my bad luck sometimes as things seemed to be looking up but then this happens. Once the flesh has softened they may use maggot dressing therapy to get rid of the dead flesh or a vacuum pump. Some childish part of me thinks maggot therapy sounds cool.....

So after all of our ordeals, being able to sit in  my wheelchair to get to Tim Chamber's wedding is the height of my aspirations at the moment.

Being stuck in bed is very frustrating and I stopped answering my phone most of the time as I have done nothing and been nowhere, so I have very little going on of any interest to talk about.

Maybe this will force me to update my Blog more often. Take care and hope you are all keeping well.

The Clot Thickens

Hello All,

As always I hope this finds you well wherever you are.

In my last blog I had been moaning about trying to motivate myself to break through the misery caused by steady steroid reduction and the subsequent side effects.

Things got worse, reaching a stage where my face swelled up, my eyes were almost swollen shut and I was shedding skin on a daily basis to add to the itching. It was torture to be honest, with the constant itching being the worst thing as it is unrelenting. My wife won't let me put any pictures of myself on the blog out of the sense of preserving some kind of decency. I admit it wasn't pretty. I even scratched most of my eyebrows and some of my hair off. Basically I looked like a mangy cat that had gone 12 rounds and lost. Badly. Now it seems to come in stages.

Jay, practical as always, bought a hand held vacuum and I suffer the ignominy of being regularly hoovered to get rid of skin. The fun was exacerbated when I noticed my left thigh had swollen up, was really hot and felt hard. All the symptoms of Deep Vein Thrombosis. So off to Accident & Emergency for my regular visit, except this time they took blood and confirmed I had a blood clot and made me stay in the ward for the night, despite my most determined attempts to let me go home.

Oh well, the next day I had a scan that located a clot in my groin. Jay told me it looked like a little man crouching (not medically important according to the doctors) when the image came up on the screen during the Ultrasound. I now have to inject myself once a day with blood thinners for the next six months, and then take some kind of blood thinner for the rest of my life.

Thankfully I have had a blood clot before so we knew what to look out for as they can be fatal. And in the meantime the dermatologists finally agreed that I have some form of psoriasis which would account for the skin problems and what they think is psoriatic arthritis. I was given Chemotherapy tabs to take for the psoriasis but that was stopped after my blood results showed up some problems with my liver function that would only get worse if I took the chemo. So I am back to trying out new creams etc.

Otherwise my mother and sister are over from Australia so it has been great seeing them and catching up. We have had a few entertaining evenings and it is nice for Jay and myself to take our minds off everything once in a while. Because I am struggling a bit at the moment I haven't been out to do anything fun for quite a while but we are looking to get a Wheelchair Accessible car I can wheel into rather than have to transfer into, and hopefully we should have our little noddy car sooner rather later.

I have just come back from Stanmore and the results from the MRI I had last Thursday show no change in my tumour growth so that is good news.

Lots of love to all and keep well and hopefully the clot shall thicken no more...

Hibernation is over - time for ime to defrost

Yebo Everyone,

I hope this finds you well and if you live in the Northern Hemisphere, I hope this finds you a bit warmer than you have been for the last couple of months. It seemed like the cold weather would never end.

For myself and Jay it has, without doubt, been the most challenging and stressful time over the last couple of years in terms of my physical health and our collective mental health! But as seems to be the case in life in general, as long as there is some good to counteract the bad then you have to just get on with it.

Two weeks ago I found myself in the Accident and Emergency ward at my local hospital, St. Georges, getting my left hand and wrist x-rayed. I had woken up earlier that week with stiffness in my hands and my left hand got progressively more painful to the point where one morning I couldn't physically transfer into my shower chair and was stuck in bed. Obviously, if only 25% of your body works, then your hands, arms and shoulders become important tools.

Being unable to wheel yourself around is not the only issue, there are also practical issues such as being unable to even go to the loo or make a drink, so it wasn't fun and pretty distressing as you start imagining that it must be tumour growth.

And to compound issues, because I had pain in my hands and felt weak, I sheared a lot of skin off the back of my legs by transferring badly from chair to bed earlier in the week. This was to add to the pressure sore that developed on my sacrum. So the combination of having sores in the worst place and being completely immobile meant that we were not happy campers. Thankfully there is no fracture in the wrist they can identify, even though they want to see me again as there is some damage there.

I was given a wrist brace and that seems to have helped. I can move around and the pain isn't too bad at the moment. My skin is healing very slowly but hopefully if we are careful then it will eventually all heal up.

So that seemed to be the lowest point.

All the while I have been treated once or twice a week for the pressure sores on my leg. The hard work Jay and the nurses have been doing with my leg seems to be paying off as I have gone from having three sores to one sore and that seems to be healing. I had a vacuum machine attached to the wound on my ankle for six weeks and now it seems to be a month or two away from healing.

Because I have reduced my steroids so much, the only drugs I pump into my body are painkillers and sedatives so that is not a great cocktail combined with pain and mobility issues. Steroids, for all their negatives, did give me energy. The less you move around, the more non-compliant your body becomes and the more pain you find yourself in. One afternoon Jay went to work and came back to find me sat in the same spot, half asleep like a bear with a sore head.

So all of these factors added up to life grinding to a halt and being mostly about keeping going and making it through the week rather than  doing anything interesting. At least I was managing to sleep properly a couple of nights sleep a week, and realised debilitating constant pain and discomfort can be. Not being able to get myself into the car and go out was really frustrating.

For the good news, I had my 3 month MRI scan last Tuesday and to be honest I feared the worst as I was feeling so rough, but at the follow up on Monday the consultant was happy with the images as he says there is no new tumour growth in my spine. I was dreading having to get onto the table for a scan with my dodgy wrist but thankfully I have embraced the power of painkillers so they could have set fire to me and I wouldn't have noticed.

To be fair, because my veins have mostly thinned from all the steroids I have been on and the sheer amount of blood tests I have had (14 blood tests in one week at Stanmore was a record for me) it really difficult to draw blood or stick needles into me. So needless to say, after a nurse blew a vein on my baby finger on her fourth attempt to insert a Cannula I was pretty happy to have dosed up on painkillers.

I go back in 3 months for a follow up scan and take it from there. In fact the consultant said that there are signs of cancer cell necrosis, which to you and me means that some cells are actually dying. However, the fact of the matter is that the tumour isn't going anywhere but somehow it isn't growing so I am exceeding expectations as far as that is concerned.

I even let a well meaning volunteer at the Royal Marsden rabbit on about taking the fight to cancer without flying me into an indignant rage about how being sick is nothing like a fight. The late Christopher Hitchens put it succinctly when he said, 'I am not fighting or battling cancer - it is fighting me.'

We have seen a few groups of friends over from Zimbabwe which was great - It really is a parallel universe in the homeland where things can change in a heartbeat whereas in the UK the opposite is true, so at the moment I am glad to be somewhere stable where I can get whatever I need without too much difficulty. Everything except decent fishpaste that is. Those of you who are aficionados of the culinary masterpiece that is Peck's Achovette on toast will know what I am talking about. People always ask me what I would like from back home when they come over and instead of the predictable childhood treats and delicacies like Biltong, my standard request is ground up anchovies.

Jay is well and back at work after the Easter break and has been working hard to educate and entertain her students during their afternoon extra lessons. Having taught one on one lessons when I was working at a language school many moons ago, I know it can be like pulling teeth especially when the pupils sometimes aren't keen to be there so I feel for her, but she does a great job.

So we are slowly trying to get back into some kind of routine and raise my energy levels as the last few months have really taken a lot out of me, but I am positive that I will be back in the swing of things soon enough and be in a position to get out and about a bit more. Some of my mates have even given me writing projects to do.

Thanks for the messages of support we continually receive from so many of you. Right, I am off to brave the streets of Tooting to get a haircut from a guy called Tony. No matter what I suggest I always trundle out of there looking like a  paraplegic Polish bouncer, but I am too cheap and lazy to find an alternative.

Lots of love to you all,

Bruce and Jay

Bruce Unchained

Yebo everyone and compliments of the season.

I thought the impending Mayan apocalypse predictions for late December would mean I got to save money on buying Christmas presents, but alas the only apocalyptic thing that happened where I live was Waitrose running out of Turkeys.

After all of the years of me sending out this blog, I have received some heartfelt responses covering a huge range of emotions; support, shock, anger, sympathy, you name it. But the sheer number of responses from you guys to my last blog made me realize one thing: Cologne adverts really, really bug the hell out of you.

We had a quiet Christmas day. My mother-in-law, Peggy, joined us for the day and we had a nice relaxed time, opened a million presents and chilled out. New Year’s was the same really, just had a friend round and relaxed.

My days of being a party animal seem to be over. One year a large group of us spent New Year’s Eve on a boat going up and down the Thames, complete with loud music and a very ill-conceived all inclusive bar.

By 11 o’clock, after much searching and arguing with the staff about my rights to any form of alcohol found on the boat, we had located the Sambuca and other shooters. I think the cruise organisers were making a mental note to make sure they implemented a no-Zimbabwean policy in future.

This year it was vegetarian canapés and some fruity cider for the girls. Things have definitely calmed down these days, it happens to all of us I suppose. For me it is not through choice, the Hell Raiser is still there, but has been restricted by me ‘elf issues as they would say in these parts.

Speaking of which, my leg is still subject to a vast amount of nursing attention. The district nurses now come twice a week for at least two hours to talk about the pressure sores, clean out the wounds and change the dressings. They are now using compression to stimulate tissue growth and healing by wrapping both legs up in numerous bandages. Sometimes we have a team of two, sometimes up to four people. So I have my wife, community nurses, and tissue viability nurses and now a plastics nurse all having a look while I lie there.

The long and the short of it is that the major pressure sore is just not healing up. This is because the wound is on my ankle and kind of movement of my foot whether in my chair, getting in and out of the car, or even just moving it off a footplate is stopping the flesh from growing. So now when I sleep I have to do so with my moonboots on to keep my ankle straight and at least give it a bit of time in a good position.

To add to all the fun, because I am continuously bandaged, I also have to cover my legs with black bags in the morning when I shower to keep the bandaging dry. The next step is to put a suction machine on the wound that is meant to suck out all the bad stuff and promote tissue growth.This all adds to the time consuming routine I find myself trapped in which adds to my general sense of frustration. If I manage to get these pressure sores sorted life will improve greatly so I am ploughing on.  Cruising around a snow covered London in sandals probably doesn’t help either but I still can’t wear shoes due to the size of my feet.

Speaking of which, it has been snowing heavily here for quite a while, and although it initially looks pretty I am not made for snowy conditions and have a few hairy moments on the ice in my chair.

I have been given a more comfortable chair by local wheelchair service. It is a real cheapo, but is reclined and a lot more comfortable as the back is very high and provides me with real support, and has me stretched out properly. Of course there is a pretty substantial downside. It is so big and long that I cannot really move around the flat. It is too high for me to get under the sink to get water, too long for me to brush my teeth, too big to get outside into my back yard to have a smoke without completing a a twenty-five point turn and too cumbersome to wheel around in outside as the wheels are behind my shoulders.

It is basically a static wheelchair if there can be such a thing. The other day I dared to take the Behemoth into the kitchen in an attempt to make some coffee. I managed to reverse to get next to the counter to make the coffee, nearly knocked over all the plates, so I turned around, knocked everything out of the veggie rack with my feet, then got frustrated, knocking the dustbin, fridge and tray over just trying to turn around.

Like all reasonable people I did the natural thing and assaulted the dustbin and used some choice language. There were some guys having a row outside as I went into the kitchen but after my little thrombosis there was deathly silence outside. Some might say it is a little big for our little flat....

Otherwise all is well. Jay is back at school tutoring in the afternoons. We are both doing the usual New Year, New Me resolutions and are trying to keep healthy.

I went to see a dietician who went through an eating plan with me and then told me I had put on so much weight in one year because I was taking loads of steroids, can’t move most of my body and have a drug regime that makes me weak and lethargic. After so much blinding insight, the other dietician sitting in the corner cut in and said that we should probably not waste time stating the obvious.  As much as I love the NHS, sometimes they do treat you like an idiot.  

Otherwise not much has been happening apart from Lance Armstrong giving the one-nutted amongst us a bad name....

Take care everyone